It Is What It Is....

2012 and Beyond?

2012-01-11T09:55:00.000-06:00

Happy New Year!

I have been particularly pensive these past two weeks. I want 2012 to be different for us. I want remission, or better yet, I want to be cured. I also want M to go to the university of her dreams or travel the world searching for adventures. I want C to be section leader for bass drum in the marching band and someday win the Tour de France. I want Richie to smile and be happy. I want my mom to live forever and I want world peace.

Not too much to ask for.....but I do have this ‘feeling’ that we will see change this year. I don’t know if it will be the cancer, something with the kids or Richie’s career, but I feel like we have been living on the edge of a great big yawning black hole for the past five years and this year, I feel like we have taken a step back from the edge.

We are having unseasonably warm weather here in eastern Kansas. A year ago, I was bundled up under hats, jackets and blankets trying to keep warm. And feeling like I couldn’t go on much longer. I had had about nine carbo/taxol treatments since summer of 2010 and was very tired and feeling defeated. I felt like I was waiting for something.

Thankfully, 2010 brought changes. After the biomolecular assay was done in early February , I found out some very specific things about my cancer. And this gave us hope and the names of some drugs that might help. I said no to more carbo/taxol treatments (for now) and started back on doxil at the end of winter. My hair grew back, a welcome relief.

We also had some wonderful adventures, making memories (as Dr. C says) which included a trip East to look at colleges, a stop in NYC to see a friend and race to the top of the Empire State Building. It was cold up there, but the day was sunny and bright and we were happy. We sent C to Europe and M had her first year of working at our local farmer’s market. M and I took a college trip with dear Stacey and had a blast cruising the upper mid-west dreaming of things to come. At the end of the summer, I received word that I could join the River Discovery trip and I took off with a week’s notice.

I think that is when the real change happened for me this year. Since cancer became a part of our lives my biggest concern has been how it affects Richie, M and C. As parents, we first focused on our children. We have offered whatever we could and as much as we can to help them through this awful reality. Always there to remind them that there is still good in the world and that this is life. It’s our life and we’ll make the best of it that we can. We’ve all had professional help from many different providers and we have had the best help from the community of family and friends that have surrounded us with help and love. I often envision you all standing in a circle, holding hands while the four of us float and move inside that circle. We know we are loved and safe.

I have had the luxury of focusing on myself and being able to take the time to educate myself about this cancer and what my options are in regards to my physical health. That I have had this opportunity speaks largely to the generosity of my immediate family and the support of every one of my family and friends. Rides, meals, smiles, hugs.....they all go a long, long way.

But the trip to Idaho was a real turning point for me. There, away from the structure and support of my everyday life, I learned a little bit more about myself. I learned that I am stronger than I thought. I learned that the river will never stop flowing, the sun will never stop rising. My heart will never stop hurting - it’s just that kind of heart. I feel these feelings because that is who I am. And I love myself. I love the person that I am. I love the wife I have become, the mother I always was and the friend that I am and can be. I love that I dreamt of being a mother when I was a girl and now I am. I love that I am alive, even with ovarian cancer.

And the river trip brought me to today. I can sit and think of all the ups and downs of the past five years, but I don’t feel sorry for myself or wish things were any different (other than the remission and/or cure thing) because then I might not have had or taken the opportunity to reflect on my life and the blessings it holds.

So I welcome 2012 and the changes it will bring and I hope for the best, prepare for the worst and be glad I am here to be doing that.

Maggie

Happy December

2011-12-10T10:38:00.000-06:00

Hi Everyone!

The holiday season is upon us and I find that as much as I loved Christmas when the kids were little, I love it even more with them as young adults. They have a different appreciation for what the season means and their expectations are more in line with reality. We can still have magic without the mystery of Santa and their fantasies are more directed at time with family and friends than with what special gift is waiting under the tree. And they sleep later which is a real bonus!!

The cold weather is here, the wood burning stove is keeping us warm and I am busy knitting and sewing, two occupations that make me very happy. After the news of lung mets, we struggled through November. We were lucky enough to have had Mom, Mary and Kaki visiting in late October to get us past the first hump of depression. And then two of my dearest, oldest friends came to visit in November. Terry and Dede are two people that have always been in my life. I don't have any memories of life with out one or both of them in it! Our time together was more than wonderful and they both gave me far more than they realized with their visits and all the giggling and laughter that occurred while they were here. We ended the month with a visit to St Louis for a Murphy Thanksgiving. It’s our favorite holiday with the Murphys and never fails to lift my spirits.

M and C are busy finishing up the semester, final exams and projects coming due these next two weeks. Richie is hoping to take some time off of work during the Christmas break and I am working my way through the second round of topotecan and avastin.

So far, so good on the cancer front. My CA125 dropped last visit and that is a good indication that something is working in my favor. At this point, I feel so jaded that I am not too excited, don’t want to get too hopeful because I don’t want to be disappointed anymore. The side effects are relatively easy to handle. I have 24-36 hours of nausea after each topotecan infusion and as it affects my bone marrow, I feel the familiar exhaustion that comes with chemo. I have few responsibilities outside of the house so this is very manageable. I take my first treatment at the cancer club at KUMed and then days 8 and 15 are here in Lawrence. We have an incredible regional oncology center at the hospital here in Lawrence. My doctor is just amazing, a real fighter and a fantastic patient advocate. I love each member of the nursing and office staff. They are so sweet to me and are quickly becoming like a second family. If I have to do this, I am so glad to be there.

M is busy applying to college. She has applied to about 15 different schools, and received good news from all of them. Now we enter the financial aid phase and hope for the best. She has been awarded some scholarships so far, but will have more information after the financial aid paperwork is submitted. Charlie will be participating in the Kansas Cyclocross (bicycling) Championship this weekend and has been working hard training for these kinds of races. It’s awfully satisfying watching these two as they become passionate about their interests.

Madeline and I are working on starting a support group for teens who have a family member with cancer. We have great ideas and I hope we can find some other kids that will be willing to join the group. Madeline tells me that we just need to offer snacks and teenagers will show up. They are always hungry! My hope is to give my own children a safe place to share those fragile emotions. While I know they both have great and supportive friends, there is something about having a shared experience that makes these kinds of support groups so very important.

One final bit of news, I received the best Christmas present EVER yesterday! For those of you who know Mary and Kaki, you know they are the BEST Cardinal baseball fans and go to spring training every year. And this year, I am going also!! I have wanted to go and be with them for years now, but it has always been out of reach. This year, Richie and I decided that I just had to go and of course, Mary and Kaki and Mom were supportive of that. So my apologies to real baseball fans who think they should be going in my place, but I will cheer hard and have a great time with my sisters (except for my sister Chris - sob!) and mommy!!

There isn’t much more news to share. Thank God. No major sickness or setbacks. Richie and the kids are healthy and everyone seems to be managing the stress of cancer, and of life in general, pretty well. I sure do like these kind of updates!! I hope that the holiday season brings joy and love to all of you. Thank you again for helping us to get through another year. Next July, I will have made it through five years of cancer and I am so very thankful to have had all of you by my side during this adventure. Lots of hugs, love and kisses!!!!!

Maggie

Autumn

2011-10-27T14:57:00.000-05:00

This morning Richie and I came into Kansas City for another visit to KUMed Cancer Center. The colors of the trees was just incredible. I love this time of year. I Iove the weather, the changing of the colors. I like the idea that Mother Nature is putting everything to sleep for the long winter season. Each season has it’s merits, but for me autumn is always best.

I am sitting in the cancer club as I write this email to you all. It is Wednesday, October 26, 2011. Today is the first day of my new chemo regimen.

Almost two weeks ago, I had another ctscan and the results brought some rather bad news. I have new growth in my pelvic region. There is another spot on my bladder and another lymph node is showing signs of the cancer. Worse yet, there are now two spots on my lungs. There is no better way to share that news, so there it is.

Of course, our initial response was indescribable. I knew that something was up because I have been experiencing some additional pain. It’s always been in my lymph system and so to hear that it was in additional lymph nodes was not surprising, but the metastases to the lungs - that was devastating.

It’s a whole new ballgame - apropos for this time of year - and it’s a game that has left me rather down. It took Richie, Madeline, Charlie and me a few days to get over the shock. I had a good talk with Dr. Chapman at the office and she followed up later in the day to answer additional questions that I had about moving forward. I still feel like she is working well with me and will do whatever she can to get me to good health if that is to be my fate.

To be perfectly honest, I have options, one of them being the topotecan/avastin protocol I am on now. I could have chosen gemzar. This is a chemo that I have already been on and didn’t have much success with. It worked for for about seven months. This is about the same amount of time I get to see on most of the drugs I have been on. I could also choose to have surgery. There are more risks in that then in taking the chemo. I prefer to be in life rather than watching from the sidelines. Finally, my other choice is to do nothing. Palliative care would be called in and I would live out my days hoping to manage the cancer and it’s side effects until I can’t go on any longer.

But I am not ready for that. So I am going with the chemo.

The chemo will be administered on day one, eight and fifteen. I will be able to do day 8 and 15 at our local cancer center. This makes me happy to be so close to home.

I am terribly scared and hoping for success, but I am at peace with the decision because I feel like I am making the best choice for me and my family. Topotecan was one of the drugs that was suggested as therapy for me from the Caris biomolecular profile. So that is comforting and encouraging. I have avoided avastin because of the problems it causes, one of which is fistulas. A fistula is a term used to refer to an opening in your colon. I am trying it with the topo on the doc’s recommendation, but I also think that it’s time for the Hail Mary pass. (Sorry for all the sports analogies!!)

Surgery will always be an option, but I am not comfortable with going down that road right now and so that’s that. I have discussed all this with not only Richie and my darlings, but with some cancery friends and done my research. TJ said that really the only good thing about my cancer is that is slow growing. And that I am here today because of all the right decisions I made in the past. This made me feel wonderful. Not only is my brother proud of me, but I am alive here today to talk about it.

Everyone said just the right things, asked just the right questions and left me feeling all warm and protected, just the way your family and friends are supposed to make you feel. So, I don’t have much more to share right now but know that I can feel all your prayers and good intentions helping me. How else would I have made it this far? Please don’t stop because I am not ‘cured’ yet, but I am as always hoping for the best.

Love,
Maggie

River Discovery, Part II

2011-09-27T11:39:00.000-05:00

The days are getting shorter. Richie and I celebrated our 21st wedding anniversary Thursday. In the craziness of the last two weeks, we both forgot about it. I am glad we could both be okay about that because even though it is an important anniversary in our story with each other, it is just a day. What is important is what has happened in the meantime. And what is happening right now.

I left off my recounting of the River Discovery trip after day two. I am glad for the diary I kept because I quickly lost track of days and dates. Time was easy to estimate with the sun’s position, but keeping track of the days didn’t seem terribly important. So if anything seems out of place and time - it’s only in the recounting, not in what was actually happening.

Sun Sept 4

By Sunday morning, I had easily lost track of the day and the date. And what a feeling, the world had really fallen away. I had the best night's sleep and was ready for the day. This morning I started the day with Amy as a guide. She, her family and friends are the reason that River Discovery exists because of their own intimate story with cancer. Their lifelong love of the river and knowledge of the wilderness is what helped to carry me through this adventure. When you have confidence in those around you, you can’t help but be confident in yourself. (This is exactly how I feel about the doctors and nurses that have helped me in the cancer club!) The guides’ knowledge of the river, the local geography, geology and history of the Salmon River Valley was not only part of the program, but a special treat. Hearing someone’s love of their environment and place resonates with me. This helped to increase my sense of safety and my trust that on this trip down the river I was going to be okay. They hadn’t steered me poorly yet and by today I realized that was unlikely to happen. Being able to trust so openly and honestly in others is so freeing, such a gift to receive. I will be forever thankful.

We stopped early for an hour's hike up a small tributary. This was a beautiful walk and the prize was a small pool at the end of the trail. This was physically challenging for me as I have been so inactive in recent months. I had to work hard to complete the hike, but I was pulled by the beauty of the area and a feeling that I had to see it to the end. The trail started by a beautiful bridge which stirred my memories and gave me a sense of peace, as if I had been there before. I felt like I had seen this bridge, I had a connection.
I hiked with the others to the end of the trail and rested at the pool. I felt such a feeling of peace and completeness in that moment in time.

We stopped and made an early camp that day at a sandbar that had a rather high cliff we would be using to rappel from. I was clearly exhausted from the hike and Ellen got me tucked into a restful spot in the shade for a short nap. I felt like a little kid again in a way because I was just too excited to sleep. But I rested and relaxed while others sat in the water, played games and enjoyed a peaceful afternoon. It was nice to have a day to slow down.

At camp, Amy got busy rigging her ropes for the rappelling. We climbed to the top of the 60 foot cliff and after very thorough instructions we took turns rappelling down the wall.
I volunteered to go first. I knew that if I didn't jump right in, I would change my mind. As I stepped off the edge and followed Amy's instructions to go straight down (yes, straight down!!) the side I was just overwhelmed with a feeling of freedom. Even cancer couldn't touch me there. In that moment in time, I wasn’t a cancer patient or an out of shape 47 year old woman or a mother or two teenagers - I was just Maggie!! It was incredible, I was on cloud nine!! It was easily one of the most exciting things I have ever done. I was crying and laughing at the same time. Such joy!!

Ellen had rigged up a solar shower for us and it was such a reward to pour some warm water over my head and ‘bathe’ at the end of the afternoon! In the evening we gathered for dinner at the campfire, recounting our highs and lows for the day. I really enjoyed this ritual. As much time as we all spent together during the day, it was always interesting to hear others interpretations of the day, their lows and their triumphs. Sunday was easily the highlight of the trip for me. And I knew all my angels were near, the human ones and the spiritual ones!

I thought a lot that night, watching the stars, and thinking about growing up. I was always in a such a hurry to get through childhood. I wanted to do it all by myself. I wanted to do what I wanted, no one telling me yes or no, right or wrong. I wanted to play all day, my games, my way. In my rush to grow up, in the reality of life as it is now, I had shuffled those childhood dreams and wants to another place. And although, I haven’t let cancer take my optimism or sense of humor, I have let it take away my sense of FUN! The reality Richie, Madeline, Charlie and I face is not so innocent these days, but there’s still time for play. We need more lightness in our lives and to encourage each other to live in the moment. I found new strength and purpose in these moments, in these times. The excitement of the rapid followed by the peace of the eddies, a hike, a prayer at the river pool and the thrill of rappelling, each moment gave me comfort and confidence in life again. And in my ability to LIVE it!

Mon Sept 5
On Monday, we awoke, ate breakfast and struck camp. The morning reading gave me thoughts to chew on for the day. Another short day on the river, with a stop at hot springs along the way. Sometime in the 70s some people had brought in concrete and created a makeshift pool at the source. Everyone in the group trekked to the ‘hot tub’ and was able to jump in and feel the warmth for a bit. There were smiles all around especially from those of us who were missing the conveniences of the modern world. It was so comforting to feel that warm water after days of sand, dirt and cold water. A nice reminder that civilization was not so really far away.
We made camp early again this night at a beautiful sandbar on a bend in the river. There was more time for a warm wash and quiet before the evening began. We had plans for a combination luau and fiesta!! A celebration for the many miles we’d covered so far and our triumphs along the way. We had guacamole, chips and margaritas! I admit I overindulged but it was such fun, there was much laughter and a feeling of happiness in our little community. One of the participants had some experience with hula dancing and so our cross cultural evening on the Salmon was interesting to say the least. Imagine 15 women singing, dancing and laughing on a sandbar on a river in wilderness. The gods MUST be laughing. We had a lovely dinner, fish tacos, and ended the evening with another gathering to share our highs and lows. Really by this time, I couldn't come up with any lows. Nothing but good was happening for me. I was amazed at how each day I felt a deeper sense of compassion and love for all the members of this group.

My hopes for myself on this trip were that I would be able to break out of the comfort zone that I have created for myself these last four years. I like to think of it in terms of peace. I have been looking for the peace that has eluded me for these years. Mostly, I am trying to find peace with my disease, peace with what it is today. I still believe that I can find remission and a return to good health, but if that is not my path, then I have to find peace with the cancer as a chronic disease and to come to terms with this as a part of my death. In recognizing I have no control and that that is okay, I can see the peace. One gift the river was beginning to share was that living in the here and now was the most important thing I could give myself. This doesn't mean I can't prepare for a future, but I need to find the joy and love and gift of every day and revel in that. There will be moments of change and chaos (the rapids, the chemo treatments) and then the times of relative calm (the slipstream, holding Richie’s hand, taking a walk.) And I am okay with that.

Tues Sept 6

Striking the camp in the morning was an important ritual for me. Starting fresh every day. The habits established in these few short days showed me what strength I still had. Not just the physical, which was wonderful and felt so good, but in the emotional and intellectual strengths I had to offer. It felt so good to rely on myself again. The support I have received from all my family and friends notwithstanding, I have not had to do much for myself. Not to belittle the physical demand that cancer makes on my body (it’s a bit like getting beat up every month, as Richie puts it) but I don’t do much in the yard or around the house. Emotionally, I have taken a break too. I am not always able to give the hug or kiss the booboos. Not like I used to do. And so to keep up as I did was one of the many rewards of this trip. I felt strong for myself and others and it was such a wonderful strength to hold on to!

This day we stopped at an old homestead that seemed to me to be a garden of eden in the wilderness. The original owner was a real mountain man, a loner, who loved women and adventure and seemed only a little odd - all things considered. He built his fortress and lived his life in a remote wilderness. Relying on himself to manage through the days in that canyon. Sure, he may have been a bit kooky, but I was a little jealous of the surroundings and the peace that came with that isolation.

But I am a social creature and would have found that life lonely. The people that occupy the bar now are making their own way and it appeared to be pretty darn peaceful. And they sold Haagen Daas ice cream bars - what a treat on a hot summer day!!

After we left the fortress we had only a short float to camp. The day was very warm and the sun was high in the sky as we prepared to pull in to camp. In the last half mile or so, I jumped in the river following Amy and Sandy. In the first seconds in the water, I was so shocked by the cold, I imagined I could jump right back into the raft just from sheer shock!! I could not believe how cold the water was, but I settled in for the float and actually became used to temperature for that short period of time. The strength of the current made slowing down difficult, but the shallow depth kept me from floating too far away. I made a safe landing at the beach.

We unloaded the boats, set up camp, relaxed in the shade of an enormous ponderosa pine and prepared for our final night on the river. I certainly could feel a sense of melancholy settling in for me. In all these days and nights on the river I had experienced a full range of emotions. I hadn’t thought beyond my immediate circumstances or surroundings in days. Knowing that it was coming to an end was both relief and a disappointment. Always a city girl, I was looking forward to a long shower and washing my hair. I started to think about Richie, his smile. About Madeline and Charlie. I did miss them.

Wed Sept 7

Bittersweet day, the trip is ending. Our group got packed up early as we had to meet a plane. This last day we would only spend a short time on the river, but we had a couple of good rapids to meet and I could feel the electricity in the air. I traveled the last day with Larry. And I jumped in the back of the raft. It hadn’t taken me too long to figure out that the back of the boat was the spot for me. I didn’t get nearly as wet there as I had while riding on the front and I could stand up and hoot and holler, which I am rather good at!

I felt the river was a little sad that day. I was a little sad. I had experienced such a variety of emotions and physical challenges in the previous five days (and the past four years) and I had survived and thrived. I had met the challenges and felt stronger than I had in many, many months. I feel like I am prepared for the future, whatever that may be. And lucky me, I am moving forward with 23 new friends. Although lonely some days, I have never been alone. That’s a lesson, isn’t it? I have so much, I’ve recognized that these last few years, felt it - now I know it, with such certainty and trust.

Fast forward.....
Tues Sept 27

I have survived another round of doxil and finished two weeks of double antibiotics. I am still standing. I feel remarkably good given the chaos of the last two weeks. I feel a shift has happened in my life and while I believe I have been on the path towards this shift for a long time, the trip to Salmon and the adventure down the river has solidified that shift in me. It wasn’t just the experiences I had or the laughter I shared that moved me. It wasn’t just the rapids nor was it the slipstream we floated through. I have been searching for a way to accept the cancer into my life (which means accepting it as a part of my death) and to find my peace with it since the diagnosis four years ago. Every stage of this story, from the first emergency surgery, to recurrence, to constant chemo and related health issues has challenged me in every physical, emotional and intellectual way. And still I am here.

On the first day on the side of the river, after the paddle boat and crew dumped, we stopped to see if we could help the others. I was shivering cold, teeth chattering, and Kyle told me, ‘get off the wet clothes, into your dry things right now’ and I did. Right there on the side of the river I stripped out of the wet and in to the dry. It wasn’t until after that I thought about my naked body out there, my white fanny flashing in the air. I realized that I’d already given over my trust to this entire group. We were there to support one another, to carry each other to the end. As the river had provided many metaphors along the way, I decided that this was an important one for me. I shed the cancer story when I took off the cold, wet clothes. I pulled on my dry, lovely fleece, like a new skin, a new perspective. I allowed myself to feel scared, joyous, cold, warm, silly and brave. I took care of myself. I reawakened that little girl who so loved to do it herself and now has the maturity and wisdom to trust that in the end, it will all be okay. No matter what.

I have a favorite poem by e.e. cummings called ‘let it go.’ Brenda shared it with me in early days and I read it regularly to remind myself that in ‘letting go’ all that is left is love. And that, I have in abundance.

Love, love, love
Maggie

River Discovery, Part I

2011-09-21T08:05:00.001-05:00

This is going to be a long one, and I am having trouble getting my thoughts down so I am going to send this out in installments.

I left Lawrence on August 31st on a 6:15 flight to Boise. It was a long day, and the start to a great adventure.

Wed Aug 31

Had to get up at 3:30 am to make it to airport for an early flight. My wonderful cousin Greg gave me a round trip ticket on Delta to Boise and from there I was picked up by Mary B. Mary is a board member of River Discovery. We had a wonderful time visiting. She was my kind of gal and conversation was easy and pleasant as we drove from Boise through the mountains to Salmon, ID.

Her car was filled with fresh peaches -what a fragrant trip! We also stopped at a fruit stand and grabbed some fresh fruit and veggies and stopped in Stanley for a picturesque lunch. These are beautiful mountains and the scenery was incredible. Mary and I talked about love, marriage, knitting, children, life, cancer and of course, River Discovery. We arrived in Salmon around 5pm and I was wiped out, I ate a snack and then slept for about 12 hours.

Thurs Sept 1

Woke up Thursday with good energy and had a relaxing morning, enjoying ‘modern’ amenities like hot water and flush toilets for the ‘last’ time for a week! I had a room at a hotel right along the Salmon River in Salmon and I do admit to watching the water flow at a rather speedy current and thinking, “Oh, my goodness, what have I gotten myself into?”

I was picked up by Mary W., the exec director of River Discovery. She already had three passengers in the car and they had just flown in from Boise and were participants in the river trip. We drove out to Morgan Bar (every campground, ranch, historic settlement, etc. along the river is called a bar because most are sandbars!) This was a lovely spot with an area for eating and camping. We ate a nice lunch and then had lessons on putting up our tents. More participants arrived throughout the day and by the end of the afternoon a small, cozy crowd of campers, guides, board members and friends had gathered for a send off dinner.

It was clear to me that our group of survivors was meshing well. This was an amazing group of women. We had 15 members ranging in age from 21 to 69. We had some women who had been cancer free for years and others who were still in treatment. Most had breast cancer and a few of us were battling other cancers. Most importantly, you could hear laughter coming from various areas and see friendships forming as the afternoon passed into the evening. I had a great feeling about the trip that night and the arrival of Cousin Ellen really made me heave that great sigh of relief that comes when you feel good things falling into place.

After dinner, our lead guide, Amy, gathered everyone around to give us a bit of information regarding what the schedule was for the next day. It all sounded so wonderful, and scary, but I was ready. Wonderful Ellen had brought her tent and offered it to me and needing the privacy, I gladly accepted it. I shared a tent for the first two nights with lovely Rachel. She celebrated her 21st birthday that day. After that, I took Ellen up on the tent offer and it was nice to have a place of my own, a place for a nap and some quiet time.

We were given a diary for the trip and ended the night with a bit of conversation around the campfire.

Fri Sept 2

The next morning dawned bright and clear, but very cool. It was our first full day on the river. We had breakfast, struck camp and loaded up on the bus for about an hour's drive to the load in area. That first day on the river was a little cool. We started out with sun, but the wind was blowing through the canyon and it quickly got chilly when we got wet. We had one boat that overturned in a rapid and had some shocked campers at that point. I was exhausted, cold and tired and let myself kind of fall apart that early evening. I thought for sure that this had been a mistake for me and I was not going to be able to continue at the same pace. Then I realized that I needed to pick myself up and keep moving. After a quick rest, I joined the group. I wasn't going anywhere but down the river.

We arrived at our evening stop called Lance Bar. As a team we unloaded the boats, put up camp, changed into dry clothes and gathered for our first night on the river. Once I had had a chance to rest and cry a bit, get over the stress, I settled in for a good evening. We had a delicious dinner of salmon and spinach salad.

We closed the evening by telling a bit about ourselves and what we hoped our experience would bring to us. It was wonderful to hear other's comments and a great way to get to know people. I went to sleep with a bit of apprehension for the next day. We wouldn't be leaving any rapids or the cold water behind and I quickly needed to get used that idea!

Sat Sept 3

Today dawned beautifully. We had a delicious breakfast of pancakes, I tried to go the GF way with yogurt and fruit. Everything tastes different in the wilderness. I finished every morsel I put on my plate at every meal. I quickly threw out the gluten free strategy after that because I decided that to limit myself in this environment was a little looney. I was going to need all the food I could eat.

We spent the morning taking a short hike up the the Lance homestead. Amy was full of wonderful information about Mr. Lance who had settled the land. In those early days, he had to walk out 75 miles to get to the nearest town. He made quite a home for himself though and the valley was incredible. He had his own orchards, a fresh water source and the means to support himself and stay occupied. I have always romanticized this life, but it was so isolated. It would have been hard being so far away from others, yet that was part of the beauty of the land. It was overwhelming and awe inspiring and really inspired self reflection from me. I knew I was in a special place and was reminded by Ellen's urging that the river was a really healing place. A place of now, where you must be connected with your immediate surroundings. Only 24 hours in and I really started to enjoy the rhythm and peace of the day.

While on this trip we had to pack out everything we brought in except our urine which was released into the river. I had to deal with my colostomy on this trip and I was (very) concerned about how I would manage and am happy to report that I managed just fine. But how lovely to come back to flush toilets!! The first night or two was daunting, but eventually I fell into that rhythm I wrote about and it didn't take long for my body to follow .I was moving into this quiet and comtemplative place and could feel myself enjoying it. We did have lots of fun and made lots of noise, and drank some wine. So the next morning, like all following mornings, we struck camp and loaded the boats and left the previous day's camp. It was utterly simplistic and quietly serene.

I spent this second day with the same women and same guide. We were headed into an exciting day - depending on how you look at these things! Kyle (said guide) had told us much about the river. We learned out to listen (sometimes hard with all the talking), and how to look at the river’s horizon line to determine the change in the river. But we were also approaching a rapid that had changed over the course of the year. He had not gone through it yet and so the plan was to stop and scout the rapid before we went down the river. I agreed this was an excellent idea, further reinforcing my faith in the guides and their rational thinking!! This caused much anxiety on my part and others, but I believed it was inevitable, right? We had to go downriver, always forward, just like pushing through the cancer, we can't go back. It took until we were actually cruising through the rapid that I actually realized I was okay and I was always going to be okay. That in all these years the basic truth is still the same. I am okay and will always be okay. I followed total strangers (the nurses, the doctors) in to the cancer club and I was doing okay. They’d given me good advice and I have followed it and I am still alive. And I had followed these strangers, these guides into the wilderness and they had steered me clear and safely, always forward, never back.

The river really is a healing place.

It was another long day on the river, but because of the rapids we went through that day we covered more mileage and the weather was slowly getting warmer - a sign of the change in the elevation good fortune in weather!

That night's camp was established quickly. We were losing light and wanted to eat and then end the day as quickly as possible. I used pain killers as needed, mostly for my back and that really helped with the bouncing and constant movement. I was exhausted again, but feeling like I was keeping up with the group. I slept better that night, probably better than all the other nights. I wasn’t feeling an ache for home or for anything really. I was really in that time and place.

Tuesday, September 20

It has taken me over a week to pull myself together since the end of this trip. I came home on Thursday, September 9. Richie and Charlie met me at the airport and it was so, so good to see their faces. And then to walk in the door of our home and hug Madeline. I was complete. We had a lovely dinner on Thursday.

Friday morning we discovered I had a bacterial infection. It was likely my port that was the point of entry for the infection and so since Friday, September 10 I have had my port removed, a picc line inserted into my left arm, twelve IV infusions of vancomycin, and one infusion of doxil. So, forgive my tardiness, I have been re-entering the world.

I believe I was on my way to the wilderness before I actually got there. I realized that I have been on this healing journey since the day I was diagnosed. I have had to be on this road because there is no other. I was so lucky to have those moments and times with each woman and man that went into the river with me. But each one of you was represented in one of them. You have all been with me, always, all along the way.
Thank you.

I hope to have some more posted next week. I find that taking some time to digest has been a good thing. No reason to rush, the memories will be here next week and so will I.

Maggie

Idaho!!!!!

2011-08-29T13:07:00.000-05:00

It has been a hard couple of weeks in the cancery world. A couple of my girls are really suffering right now, fighting for their lives and holding to their families. I need the friendship of these ladies. I need their humor and their wisdom. I need their honesty and their help. I find that I do better with a 'virtual' group and these ladies have been an important lifeline for me this last year.

And what a year it has been. After the ctscan craziness of June 2010, I was faced with a return to the carbo/taxol routine. At this time last year, I was wallowing in self pity and bald again. I had sent Richie and C alone to Camp for vacation and the only good thing that seemed to be happening in our lives was that M had made it home safe and sound! But oh, what a difference a year can make.

Wednesday morning, Aug 31, I leave for a six day trip on the Salmon River in Idaho. I am going as a part of the River Discovery organization for cancer survivors. I will be with 14 other women and the staff and crew running this excellent organization. I am still reeling from the unexpected invitation and the speed with which this trip is happening.

I had applied for the program back in February, but was slow in getting my paperwork returned and was put on the waiting list. I felt comfortable that if I was meant to go, it would somehow work itself out and it sure worked itself out! I got a phone call last week from my cousin Ellen. Ellen is a member of the River Discovery organization and she was calling to tell me that a space had opened up for me. Sadly, another woman was not able to go and had to drop out, but that meant I had an opportunity and I grabbed it.

Ellen also helped in making arrangements for me to fly from KC to Boise. My cousin Greg was so generous as to donate some frequent flyer miles and voila! I had transportation.

I am scared, excited, anxious and stressed, but all in a good way. I am mostly worried about being able to keep up with the group. Will we have nap time? (haha) and how will that colostomy care be out in the wild? Ellen says not to worry that she's got a plan and of course, I trust her. So now it's just a matter of going and being, of seeing and enjoying. There is not of lot to enjoy about cancer, but I will enjoy this trip. I will post some photos and tell you all about the trip when I get home.

Just a Tweek!!

2011-07-04T18:00:00.003-05:00

Since July 4, 2007 and the start of our lives with cancer, I have always been a little underwhelmed by the holiday and usually just hang at home. Easy. No energy output.

Recent weeks have brought the hot, humid air of a Midwest summer and we’ve succumbed to using the AC. Lovely air conditioning, so that we can all grab a good night’s sleep in order to face the next day.

It’s really been a lovely spring and summer around here so far. We have had lots of rain which saves having to water the plants in the garden and helps the days to cool down.

We’ve finished another school year, this one without any cancer craziness. The kids have both enjoyed a very typical summer. They sleep late, do their jobs, go to the lake with friends and stay up late. Typical, good, reassuring!

This has been a hard holiday for all of us since 2007. We chose the path of least resistance again this year, no plans to celebrate, we’ve enjoyed being home and not putting too many demands on ourselves. But then Sunday morning dawned and we woke up to realize we’d been robbed in the night. A very uncomfortable feeling of having someone violate our security here at home. Without going into detail, we are all okay, only a few things are missing and we’re working on getting things secure again. And everything will be okay really. Mostly it’s just a hassle. There’s the funny things like the dogs made NOT A SOUND, or we were sleeping very deeply. And the yucky things, like, eewww, someone opened a window to our kitchen and came into our house. And back to funny again, like the dogs did NOT MAKE A SOUND!!!!!! We learned a new word. The police called the intruder a ‘tweeker’ - someone who does a lot of meth - gggrreeeaaaattttt.

And then the real gift. Always one to find the bright spot in as much as I can, I did feel thankful that this lovely ‘tweeker’ gave us our first July 4th holiday since 2007 that we didn’t focus on the cancer. So I will get my fill of using ‘tweeker’ and then I will go back to the old definition - someone who adjusts something just so and changes it just a bit. We tweaked our cancer story this time around and it came out a little differently. A welcome change.

Happy 4th of July!
love,
Maggie

The Rhythm of Life

2011-05-04T08:54:00.000-05:00

Yesterday, another ovarian cancer friend passed away from this horrible disease. Her name is Sarah and here's a link to her blog. She has a mom, a husband, two children. She had all the same vague symptoms that many of us do and she shrugged them off, attributing them to something else, to the normal stress and pressures of being a woman in the world today. She faced her challenge with grace, determination and a wonderful sense of humor and her blog has been an important part of my own path as I learn to deal with this disease.

Ten days ago, another friend, Patty, left us also. Here was another warrior woman, determined to fight to the very end and do so with humor and grace. In late March, it was Jayne. Too many deaths, too many good women who are dying from this nasty, nasty disease.

The reason I am sharing this is because I would like to ask you to take some time visit their blogs and get to know them through their writings. That is how I got to know them and although we shared the cancer as a common thread, in the end, we are all still just simple women who are faced with an overwhelming challenge brought on by this disease. There are others out there, surviving and thriving and from them I take great hope and strength from. But what I want more than anything is to keep you aware of ovarian cancer and it's symptoms. I cannot stand the idea that another friend will be touched by cancer. So take the time, get in touch with your body and it's rhythms and if you suspect that something is wrong - it is the doctor's responsibility to prove to YOU that you are okay. It is NOT your responsibility to prove it to the doctor!

Here are the common warning signs of ovarian cancer:
- bloating
- pelvic or abdominal pain
- trouble eating or feeling full quickly
- urinary frequency or urgency

Additional warning signs include:
- upset stomach
- back pain
- pain during sex
- constipation
- menstrual changes
- unexplained changes in bowel habits
- unexplained weight gain or weight loss
- ongoing unsusal fatigue

When I look back, I had all or some of the symptoms for about 6-9 months before I was diagnosed. My primary care physician was sure I was dealing with IBS and I wanted it to be that, but I think I knew it was more serious. In the end, I am still alive because I have had excellent medical care and I have educated myself about ovarian cancer and the treatments available to me. And I have had the love and caring of literally hundreds of family members and friends that have carried me so lovingly in their arms. But I don't want any of you to have to reach this point. Let's all slow down and notice the little things and small moments of the day before life gets away from us.

Here's to Aunt Cathy, Sarah, Patty and Jayne and all the other lovely women out there who have had to make the decision to stop treatment in order to live out the last days of their lives in peace and dignity. Godspeed, my friends.

Quality or Quantity?

2011-04-23T12:12:00.000-05:00

A quiet Saturday morning around here. R is out working in the yard, M is off on one of her tutoring jobs, C is at a friends house. I am taking a vitC treatment and just soaking up the peace and enjoying some fuzzy new hair on my head.

It’s been three weeks since my last chemo treatment. I can feel myself slowly gaining some energy and feeling a bit more upbeat than in recent months. The doxil will probably not show any positive results for two or three treatments and only then will we know if it’s going to help. I plan on using this time to get more focused on future alternatives, getting as many different opinions as I can. I must be able to make informed decisions as I continue down this path.

Yesterday, I received news of yet another ovca pal, someone I only know virtually and through her blog The Carcinista http://carcinista.com/ that has decided to tuck it in. She’s been struggling mightily in recent months and refusing more treatment is the next step in this rather awful process we chronic cancer patients are faced with. I highly recommend her blog. She has a wicked sense of humor and a truly lovely take on the cancer business. Her decision? Quality or quantity?

Although I want desperately to live, I have to also be aware and cognizant of what my own limits are. Someday, I will have to say “Uncle!” and only I can determine when that will be. I have a constant ‘conversation’ running through my head on this subject and have since my diagnosis. I also have regular discussions with Richie about how and when and why. These are usually accompanied by major crying jags and always when I am feeling compromised physically.

There is no satisfaction in this line of thinking, but there is a level of comfort for me. While I want M and C to know I am fighting hard to stay with them, they are living the disease as much as I am. And the realities of the disease are not pretty. We’ve enjoyed many wonderful moments in our lives together, but we have also had some extremely difficult times and a good mama takes care of her babies (no matter how old they get) as long as she can. And if there is one thing I can lay claim to - it is my ‘good mama’ status. So, I always make decisions with them in mind. How much more can I take? And how much more can my gang weather? This is not an easy path.

When The Carcinista made her decision to improve the quality of her life and be the mama her boys needed, I had a good long cry. I know in the end, no matter what happens to me, my babies will be okay. They are loved and can love, smart and beautiful, kind and funny. What more could a mother ask for? Time would be nice, but none of us have any control over that issue.

So for today I am thankful for the time I have had and for the chance to have this life. And I will hope for an even better tomorrow, one full of family and laughter and love. And I will know that I do have a life of quality, right here and now.

Happy Easter, thanks for all the meals, and for the love and good wishes.
Maggie

Spring!!

2011-03-16T11:16:00.000-05:00

I am very thankful that Spring is almost here. Technically, we have another couple of days of winter, but today it is supposed to be in the 70s and I am going to just sit in the sun for a bit to soak up that vitamin D and revel in the warmth. The two most annoying side effects of the chemo right now are fatigue and the lack of hair on my body. The fatigue requires a lot of naps and sitting around, which is getting more and more boring as time goes by. The lack of hair means that I am cold all the time. Last night, Richie and I went to parent/teacher conferences for M at the high school. The building was freezing inside. And by the end of the evening I was shivering so badly I couldn't even walk to the car. Mr. Wonderful had to go get the car, turn on the heated seats and drive around to the doors to get me. Somewhere, somehow in this wonderful life, I did something right and was lucky enough to end up with a guy that I love and who is willing to do these kind of favors for me!!! How lucky I am!!!

We are getting ready to take a cancerless trip to the East Coast to visit colleges. Four years ago, when this crazy nightmare started, I wasn't sure I would make it to this place, but we ARE there and going to explore Bryn Mawr and Smith College with M. C is going with us, too. He's not too happy about it, but I think once we are on the road, he will change his tune and embrace the fun that is traveling with Richie. I am fun to travel with too, but a 14 year old boy is usually all about his dad and that's where C is right now. We hope to have time to spend a day in NYC and see an old friend, and then we'll drop south to the Tennessee Valley to take a southerly route home.

I decided to take a break from this round of chemo so that I would have more energy for this trek. And I do have more energy. It has led me to explore some new ideas regarding the future and my treatment options. I have been feeling lately that Dr. C doesn't have a plan for me. And I understand why. She says there is no literature or published studies that indicate how to move forward. I take a sweet delight in that. I have survived for almost four years with a stage three cancer that statistically sees most patients die during the 18-24 month period.

I have defied the odds!! Take that, you cancery bitch!!! (that's for you, Kak!)

But I also am not seeing an end to treatment. The chemo is holding me steady, but not causing the cancer to regress. And I am tired from the constant chemical attack on my body, mind and spirit.

So, after a long discussion with Richie, I have decided to do two things. First, I have made a call to the Mayo Clinic to initiate a review of my records with their staff. I should be hearing back sometime in the next week or two. I think it is time to have a new set of eyes and a new mind look at me, my treatment history and figure out if there is anything else that can be done to help me.

The second decision I have made is to talk with Dr. C about not only switching to another, less devastating chemo regimen, but to also look at mixing up the schedule. If I am to always be on some kind of chemotherapy, I want more control over how and when. I want to have regular breaks so that I can have some more quality time with Richie and with the kids. This short break has shown me that I need to have a chemo vacation every now and then if I am going to be able to deal with the effects on my body. The risks are great because the cancer could start growing or metastisize at any time. But I also feel like the chemo is slowly killing me. So, will the chemo or the cancer get me first? I know I have no control over that in the end, but I do have control over the now and today. And I going to take that control now.

I will never give up the hope that I can "beat this bitch" and have a life free of cancer. But I also want to live now. I want to have the energy for trips like this one we are going to take, to work in the garden, to take a long walk or bicycle ride. I want to have the energy to enjoy where I am right now! And that has become harder and harder to do. So, wish me luck, send those prayers, shoot me some positive energy if you will. I think it's going to be a wonderful spring and summer. And I hope to have some hair on my body by next fall and winter so that I don't have to spend every day hovering by the fire. But that hasn't been a bad place to be, either.

Thanks for all the help and love, we feel it.

More Tests, More Chemo, Feeling Better

2011-02-16T12:29:00.000-06:00

Yesterday, I finished my twelfth round of carbo and taxol. I already feel better than I did three weeks ago. And that is good. I still have hard days ahead of me, but I think the routine I have established - reiki, acupuncture and cranio-sacral work, will help over the next few days. Feeling naseous and exhausted, but I don’t think this round will be as bad as the last. Good news is a slightly lowered CA125 and some info form Caris Target. It lets me know we are on the right path, added femara and the vitD has been a good thing to be on. Reminds me that I am on the right path and maybe all I need is a little more time and some patience.

It’s been a long four years and quite an incredible adventure. Recently, I asked Dr. C for some addtional testing, specifically to find out whether or not I was BRCA positive. This is testing for the breast cancer gene. The results came back negative. The really wonderful result of this news is that means that my babies most likely do not carry the breast cancer gene and are very unlikely to develop the disease. Breast and ovarian cancer can go hand in hand and this news alleviates a lot of worries, specifically for M, who has had a cloud of worry hanging over her head for the past couple of years.

Another test I requested was to have my most recent tumor tissue samples sent to Caris Life Sciences. Caris recently has started testing specifically for ovarian cancer patients. They take the tumor and do specific biomarker analysis and then compare that information available in published medical articles and treatments. The results showed that I have estrogen protein markers on the surface of my cancer cells. So now I am taking a drug called femara which has been shown to help prevent cancer recurrence in estrogen positive breast cancer patients. The Caris report also suggested that I would benefit from taking VitaminD3 with cal/mag. I have been taking vitd and cal/mag since Jan09 when I started with Dr. Drisko at KU Integrative Med! There has long been evidence that cancer patients are very deficient in vitD and after a simple blood test, she was able to determine that I needed to take this. It was a good feeling to know that I have been doing something to help myself, something so simple really. Dr. C said for all we know this has been something that has been helping me stay strong all along!!

Finally, the Caris report suggested chemotherapy drugs that would likely be beneficial to me, as well as a list of chemos that would likely not be helpful to me. The ‘good’ list included all the drugs that I have been taking. And one or two that I haven’t had yet, it gives me options! Both Dr. C, Richie and I left that meeting feeling a bit heady. It was nice to have new information to go on. Keep in mind, this information is based on a tumor that was two years old, but it is better than nothing. And a good way to look at it is that I haven’t had enough tumor growth activity to ‘harvest’ any more tumor. Things have been tough because I have had been on these constant rounds of chemo, but I also have had no disease progression, rather I have steady disease. It doesn’t make the day to day fight any easier, but it makes my overall prognosis seem much easier. As TJ said, possibly the one good thing about this cancer is that it is slow growing. And that slow growth has given me more time with Richie, M and C and with my incredible family and all my wonderful friends.

So, tonight is another choral concert, and my handsome C will be participating. I will take some anti-nausea meds (for the chemo, not the singing!!) and enjoy seeing my baby perform his music. He has been working so hard these past few weeks and I am so proud of him! M is doing well, working hard at school and trying to juggle all the exciting information in her college search. And she turned 17 last week! I am still reeling from that one, my baby, seventeen! Richie is doing well, too. We are all excited about some warmer temps around here this week. If we can just get a bit of sun that will be icing on the cake and I will sit on the porch and soak up some more vitamin D!!

Thanks again for all the love and support. I can’t imagine having made this journey alone, it’s been long and scary, but also full of love and support and I count myself as a lucky and blessed individual to have had all of you with me.

Maggie

Sunny Side of the Street...

2011-01-21T18:43:00.000-06:00

Hi Everyone -

I have been trying to stay in a sunny frame of mind, trying to evoke dreamy spring days. Things have been a little dark the last couple of weeks. I haven't shared much of this with anyone because the news came slowly, agonizingly slowly.

At the end of December, I was admitted to the hospital for chemo and my CA125 that day shot up to 508. The nurse was surprised and had it retested that night. It dropped to 480. I had had a UTI and that can affect it, but usually not such a big jump. It had been 188 in November. I was, as you can imagine, just devastated. Here we go again, I thought, the chemo stops working and we must prepare for another change. I spent the night in the hospital just tossing and turning, partly from the chemo and associated meds and partly from the horrible feeling that maybe I am losing the battle. Why can't one of these chemos work for me?

Generally, I have been feeling so good. I had had such a good holiday season, felt reasonably well and kept thinking that I was functioning pretty well. The increased CA125 was just depressing. That was a horrible night. M and C drove into KC to pick me up the next morning. I waited to tell them any news until we got home, no need to challenge my teenage driver with that kind of news while she is driving down a major highway. (I thought it was a pretty good decision as a mother!) I think some of the hardest times of this entire cancer journey have been the moments when I share cancer news with R and the kids. Seeing the look on their faces when I have bad news is just heart wrenching. But I still think we've done the right thing in sharing all the news - good or bad - with them. They deserve honesty no matter how hard it is for me.

Dr. C ordered a ctscan for January 12 and I had an appt on January 20, so I decided that rather than share information piecemeal I would just wait until after I had seen her. And I really didn't have much news to share, I wasn't sure what was going on. And that was the worst part. For that last two and a half weeks I have been just chewing over the what-ifs, the maybes, the possibilities. The good thing is that this mood spurred me to gather more information on new things going on in the cancer world. I have been looking at new drug studies and trials trying to figure out what might happen next. Wonderful TJ has been helping me, reading over the trials and associated literature to explain what the drug companies or trial researchers are looking for. He has been a great resource not just in explaining the scientific details of the studies, but helping me to determine what my role in each would be and whether or not they would be a good direction for me. (Thanks, T.) At the same time, I was sending the same information to Dr. C.

During all this, Mom arrived on January 1 for a visit. She was able to keep me pretty grounded, I don't know what I would do without her and lucky for me, I haven't had to find out. She helped me to see that things were not as bad as I was thinking and without any information from the doctor I needed to just take each day as it comes.

This last week has been a little crazy. Early in the week, I felt like I was either getting a UTI or had low hemoglobin. A visit in for blood work revealed that what was really happening was that my stents needed to be changed, my creatinine levels were a little high. So yesterday, I had my visit with Dr. C and then went on to KUMed to have my uretal stents replaced. It was a long, long day and everything went really well with that. We'd had 6 or 7 inches of snow Wednesday and had to be at the cancer factory by 7:30am. R borrowed a friend's 4wheel drive (thanks Matt!!) and delighted in being able to drive in to KC in wintry weather conditions. I was anxious about the doctor's visit, but not about getting there. I knew R would see it as a challenge and just find a way to enjoy it, he's such a great guy. So much to love about him!

We had a long visit with Dr. C. The ctscan showed little change in the tumor on my bladder, but it also showed a lymph node that has doubled in size. And interestingly my CA125 is back down to 230. We both agreed that we really just need to ignore the 480 from December. I can do that, I'm Irish, if I just ignore it, it will go away!!

But we do have to look at the 230 and the lymph node. Strictly speaking, this is considered disease progression and calls for a change in chemotherapy. But in the meantime, there is still the vaccine trial to consider. I will have another round of taxol and carbo next week. I can't change therapies now, if I want to look at this trial. And there are other things at work also. I am having some genetic profiling done. This will tell us a couple of things. I will be tested for the BRCA1/2 mutation, tested to see if I am HLA-A2 positive and my most recent slides (tumor tissue) are being submitted to a molecular profiling company. All of this information can be used to guide future treatment options.

The upside is that I feel okay about everything. I am still relatively healthy. The cancer has not metastasized beyond the pelvic area and that means a lot. That means I am doing pretty well. I feel pretty good. I could use more exercise, but I am maintaining a good weight and have a good appetite. Who wouldn't have a good appetite when we have meals delivered twice a week? I don't really have to do much but rest and take care of myself. I do a little housework, the laundry, make an occasional meal. I am glad we don't have a big house, there's less to take care of! I am still knitting and doing a little sewing and still love to read as much as I can. I can't help but remind myself that I've got a really good life. I have my good and bad days just like everyone else and there is something 'normal' and good about that.

So, I am glad to be updating you without having to stop and cry. It's not the news I know you want to hear, but it's the news I have. And I am glad you are all here to listen. Thanks for the lovingly prepared meals, the hugs and calls to check in on me.

Just need to make it through the next 3-4 weeks. Chemo next Tuesday and Wednesday. Three to four weeks for all the test results which will help in determining the next treatment I will take. She's leaning to the doxil again. That worked for about nine months for me last time and the side effects were very manageable. Not great, but livable. I will be sure to keep you updated when I know where we're headed. In the meantime, I will be staying warm by the stove.

Stay warm.

Love,

Maggie

New Year Greetings

2011-01-14T21:08:00.000-06:00

I have been reluctant to update you all because things seem to be in limbo right now. And because, as you can imagine, I tire of the cancer story. I fear my story has become so focused on cancer and yet, there is so much more going on and so that is what I will focus on for now.

Richie is very busy at work. That’s what happens when you work in publishing. There are constant deadlines and the need to always have something ‘in the can’ to go to when things blow up. He is still editing multiple titles, but his favorite and the one that takes most of his time is Motorcycle Classics. Some days I think he is still surprised that this ‘master’s thesis’ became a real magazine and he gets paid to write and research about his passion. The job comes with all the wonderful perks you might imagine....40+ hours a week, stress, managing employees, and meetings, meetings, meetings. But seriously, it really does have some great perks. And it’s a job, right? We are lucky he has one and we have health insurance.

Miss M is a fireball. She seems to be kicking and screaming her way to a future. She’s never stopped trying for something, anything, always searching and asking and doing and being. College is just around the corner. I know it will happen too quickly for all of us. I hope to get her there with little craziness from the cancer and lots of love and support. She’s got a whole family and community to help her, just like they’ve helped us up to now. We’ll go East this Spring to have a go at her college choices. I feel oddly proud that she is leaning towards all female colleges like Smith and Brown. I only hope that she looks as good on paper as she is in real life, that they see what an exceptional young lady she is and give her lots and lots of free money to attend their school.

My C. My baby. He has more faith than anyone that I will survive and thrive, I think. He, who believes he has little faith in the spiritual side of life, has more faith than all of us put together. He really has taken such leaps and bounds in the past two years in growing up. He’d done a lot of growing up before that, but it seems that recently things have jelled even more for him. I AM so proud of him. He has a few activities that he is becoming really passionate about. His heros are good people, men we know, that we’re proud and lucky to have him model. I do know he’s going to be alright. School is not necessarily his passion, but he’s smart and he’s learning. Biking is where he’s focused though. Tae Kwon Do is his exercise and drums definitely help with keeping him focused and creative. I do worry. Who wouldn’t worry about him wanting to be a cyclocross racer? I encourage him to follow his dream, because we did. Richie’s magazine was a dream. This family was my dream. Maddie dreams of a sophisticated and exciting education that will take her on worldly adventures. And C dreams of cyclocross. But I don’t want him to throw himself down mountains on a bicycle!!! It would be so unlike me to discourage him. I just want for my C to be happy.

I am so glad to still be alive, to still be with Richie and the kids. I must stay positive and find the strength to keep going for awhile. As C has said, I can’t give up yet. I have to keep trying.

Love and hugs,

Maggie

Merry Christmas!

2010-12-21T16:22:00.000-06:00

My best wishes to all for a very Merry Christmas. We will spend Christmas with Richie's family. The usual holiday preparations have been made and we are relaxing with cozy days in front of the wood stove and watching all different kinds of movies. Today's selection was The Quiet Man. Such a great movie!

I am quietly knitting the last of my gifts and enjoying the company of my darlings during the day. They disappear, as the evening approaches, to visit with their friends. Poor Richie sees little of them during the holidays. As is the rhythm of their lives right now, they sleep late and stay up late. But it is wonderful to see them doing normal things, having normal lives and pursuing normal activities. If they were staying home all the time, I would be a little worried. This behavior makes me feel good about how things have been going lately. Despite the cancer we seem to be managing well.

I am feeling good physically. These last six weeks with only one chemo (instead of two) have been a little easier on my body. Even though I had also caught a cold last round, I seemed to weather all the side effects (chemo and common cold) pretty well. And this extra week at Christmas is the best gift I could have been given. It feels quite nice and natural to have 'normal' days.

The latest cancer news is that there isn't much to report - much to my pleasure. I am holding steady. The cancer is not advancing, nor is it retreating. And I can live with that. I am very tired, but I have the energy for the little things. I can usually get a couple of small errands run, the grocery, the bank, and my favorite place - the library. If I rest for an hour or so during the afternoon, I am good for the evening. The evening is the best part of my day. I love when the kids and Richie are home. Yes, it's the best part of the day.

I had chemo right after Thanksgiving and will go back in again for a round on Dec. 29. As long as the tumor doesn't change much and my blood work stays the same, I will continue on the carbo and taxol. This next round will be my eighth of this series and I am weary of it, but if it is working for me I must continue it. The trade-off is that I feel good when I feel good. The days of nausea are no picnic, but they are worth going through to have the good days.

More good days mean more time with my gang. Each day with them helps me so much. They are my best medicine. My thanks to all of you for your continued prayers, the meals and for the loving. We recognize how blessed and lucky we are this holiday season, we recognize it every day. We wouldn't be in such a lovely spot if it hadn't been for the generosity of our family and friends. Pat yourself on the backs, my dears and I'll see you in the New Year!

Hugs,
Maggie

Weathering the Storm

2010-12-06T20:07:00.000-06:00

I've managed to weather another round. Much to my surprise. I went into this one thinking depressing thoughts. I mean, how much more of this can my body take? Well, I am gambling on more because my intention is to continue on the same path.

I think I finally have the hang of it after seven rounds. If I get a little something in my stomach just before they load me up with steroids and benadryl, I fidget for the following couple of hours and then exhaustion takes over. If I am coherent enough to ask for more benadryl during the evening I will sleep through the night.

The rub is I am never coherent enough to ask for the benadryl again and the night drags on. The constant assessments and readings and changes in drug delivery make for a long, long night. I always plan for it to be different, but need to be more explicit with my needs BEFORE I take even the first of the pre-meds.

Mostly I am just trying to document the process, but also I am trying to remind myself of what I need to do. I have it written down and I have it in my head but I often forget, hoping that each round will be better than the last.

On the other side of chemo I have the usual nausea, aches, pains and fatigue and this time I had the unfortunate luck to also get a good, old cold. C, M and I all suffered through the long weekend. I have to say that it was nice having their company for the weekend, but it is always hard watching your children suffer. I would gladly take on their woes, but I know I would not be doing them any favors. So, C stayed home from school on Friday, coughed and sneezed the day away - and away from me. I couldn't take the chance on getting more of his germs! Saturday was my day to just suffer alone. I played on-line mahjong and read the end of a good book. And I napped - often. Sunday was M's day to sit with me. She studied, we watched a good movie - The Painted Veil - and she napped.

So I have survived another round of carbo/taxol. I hope that I am close to the end of this stuff. I hate this cancer. I hate the chemotherapy, but I do love being alive. When the bad days end, I can be happy with what I have. And what I have is another day, another sunrise, another smile from my guys. I think I can weather that storm....

Focus on the positive, focus, focus on the good

2010-11-30T09:15:00.002-06:00

Tuesday morning, 8am. I am going back in to the factory this afternoon for another round of chemo. On the one hand, I feel amazingly relaxed about what I know is coming. I have made all my follow-up appointments: acupuncture, nuelasta, reiki, massage therapy. The pantry is filled with the foods I know will physically satisfy my hunger. Rides have been arranged and I have had my pre-chemo conversations with the nurse.

On the other hand, I am almost shaking with the anxiety that these ‘sessions’ bring. M, C and Rich have all jumped on the anxiety train and we all feel a sense of desperation that none of us will ever get comfortable with. There are always the niggling worries about how we will weather the chemo this time around. Will this be the time that my body has a major reaction? Will another physical side effect intensify? Will the chemo finally make me sicker than the cancer?

Rather than have a time and date when this will all be over, I’ve preferred to just know what will be happening the ‘next’ time. I don’t want to be disappointed if we have to go into extra innings with the treatment and so I don’t want to know if seven or eight or nine treatments will be the limit. And I realized last night that I don’t want to know because I don’t know what will happen next. I have already run through most of the drugs that are likely to have helped me - and they haven’t. So what next? Well, next might be a drug that could help me but that has some really nasty potential side effects. Those side effects make losing my hair seem like easy street. I cannot even list them for fear of making them real and I am not even on the drug yet!!!

But more importantly, I head into this next round with a storehouse of lovely holiday memories. We spent Thanksgiving in St. Louis with my family and it was a wonderful holiday. I really do think family and friends are the best medicine I have right now. We had a delicious dinner on Thursday at Mom’s house. The whole gang was there (minus my nephew and his girlfriend - you were missed!!) so it was a lively and loud full house. Friday started with brunch and then everyone went different directions. I found time for a much needed nap and that evening we had a great dinner at a local pizza place (a niece's current job.) Saturday, Rich and I took the kids around town to see some sights. I had a late lunch with some friends and they did some more exploring.

As always, the best part of the trip was the ride home, it’s always great to have the kids all to ourselves for those four hours and is my favorite part of the trip. So rather than focus on the bad, I will keep pulling on my memories of Thanksgiving 2010. Thanks to my family for all the laughs, the good food and wine, and the chance to all be together again, even if just for a few days.

Love, lots of love,

Maggie

Reiki and Peppermint Ice Cream

2010-10-19T18:51:00.000-05:00

My usual transition through chemo day one and beyond means I am feeling sick - nauseous, bone-achy, bone-tired, headachy, and not up for much but keeping to myself, in my bed. In ten (or so) days time I wake up again feeling like my old (and I do mean old) self. But this round has gone rather well for me and I feel like sharing it.

I did two things differently this time. I had a reiki treatment right after chemo. I don't know how it is supposed to work or why it works, but it does. I walked away feeling really good from the movement of energy. I had a nuelasta shot later that afternoon, followed by acupuncture and more energy work on Friday.

The other thing I did was to really give myself a wide berth in the food department. When I don't feel well, I will eat potatoes and corn and not beat myself up too much for going off the diet. This time, I told Richie that I just needed calories and what I really wanted was peppermint ice cream. And that's what I had on Friday night. It was devine. I love that stuff. Reminds me of Velvet Freeze and childhood and of true indulgence.

So, I am feeling good, slowly crawling my way out of this latest, longest depression I have been in. I feel strong enough to try for that walk tomorrow. I feel happy enough to join the living again. Thanks for the meals, the prayers and the good energy coming my way......
Maggie

I'll Keep My Dancing Shoes On!

2010-10-11T19:26:00.000-05:00

Had a great weekend away with Richie. I went with him to Birmingham, AL to the Barber Festival. It was wonderful to ride around with him on this little 160cc Honda. We both had such big smiles on our faces. I was able to meet so many people that have become important to him in the world of vintage motorcycles. And they all love him. Makes a gal proud, but not surprised. He is such a wonderful man. I am thankful for him, and all his family and friends. And for all they do for us...

The biggest surprise of the weekend was an unexpected visit from my brother and sister! They were only two hours away and made the trip down for a short period of time. But we had a great visit and took a quick trip out to the motorcycle fest. They got to give Richie a squeeze and take their own trip around the museum grounds on the honda. There were lots of smiles and hugs all the way around.

I had my usual amount of energy (low) and spent time reading in our room at the hotel when I wasn’t out at the track, but I loved being away from home with just Rich for the weekend. I love our house and the home we have made here, but I spend a lot of time just being inside these four walls. I am not complaining and I really don’t want it to be any other way right now, but the weekend was a great reminder that there is a world out there that I still want to rejoin and I need to keep my dancing shoes on - just in case.

I really missed the kiddos. I feel very selfish about my time with them. I am not being negative when I say this, but I have no idea what my future holds and I want as much time with them as their teen age lives will allow. But it was also very good for them to have me gone for the weekend. They need to stand on their own (even though their wonderful cousin was here with them) and they need a break from cancer every now and then. We all need the break and this past weekend was really just that!

Our entire weekend was uneventful, which is always welcome. I left town feeling a bit nervous - the ‘what ifs’ sounding loudly in my head. To have made the trip and not had problems gives me hope. Our homecoming was good - it’s always good when your children are happy to see you - and they were!!

Recovering from the weekend has been my primary goal today - and I was lucky enough to have lunch today with three of my wonderful girlfriends. We talked all about the things we needed to catch up on with each other and very little about the cancer. I like it when things work out that way. I am weary of the cancer story. I don’t mind answering direct questions, but certainly there are more interesting subjects than the %^&$#!! cancer.

I am scheduled for my next chemo tomorrow and that will be number five for this round. I don’t know how many more she will prescribe, but I feel like I can handle a few more. Richie and I will meet with her sometime in the next few weeks to determine how we will move forward. There is the question of the tumor on my bladder to consider and what sorts of therapies are available to me as we move forward. I know that there are still many in the arsenal, but not all are available to me, and I would like some information and time to prepare for any plans Dr. C thinks we need to make.

A cancer blogger friend has decided to enter hospice. A sobering day. I am lucky to still be alive, I am determined to keep fighting. She has been an inspiration to me, strong, sassy and full of hope.

My latest mantra is 'I am holding my own.' I am not getting any worse and I feel pretty stable. The fatigue is pretty constant which makes the meals that much more wonderful. It’s so good to have a home cooked meal at the end of the day. Your generosity (you know who you are!) is soooooo appreciated. We feel your love and good energy every day. I know the prayers are working, keep ‘em up, please?!

Love and hugs,

Maggie

Another update

2010-09-29T17:18:00.000-05:00

Good news! I do love to share good news. After I started back on the nasty carbo/taxol chemo treatment in July, I had an immediate drop in my ca125. I think it went from 357 to 62. And then it started to creep back up. Two weeks ago, it had reached 109 and I was thinking that this was an indication that the therapy was not working for me. But today, I have positive results from yesterday's ctscan and bloodwork. My ca125 was at 111, really a negligible increase. The ctscan shows that I still have no metastices to my chest and abdomen and the tumor on my bladder measures slightly smaller than the last scan. How about that news? I have recently been telling people that I am holding my own and I REALLY am! Maybe this is an indication that the roller coaster is changing course yet again. I'll take that because I like the highs. This also means that I must continue on the course I've chosen, more chemo, more nausea, more fatigue. It took a long time for me to grow this cancer, it's going to take a long time to get well.

We are all doing pretty well. M and C continue to amaze me. I cannot imagine really, how difficult it must be to be going through the teen years WITH a mom who has cancer. Yet every day they get up, go to school and continue to live their lives. This is really sappy but it makes me think of the lyrics from the song 'Something Good' from The Sound of Music.

Nothing comes from nothing
Nothing ever could
So somewhere in my youth or childhood
I must have done something good

I really do think that if nothing else, if my life ends soon, if I die tomorrow, my beautiful children will live on and for that I am so very thankful.

Richie is doing well too. We both love Autumn and this time of year just makes me happy. I love the change in season and the cool quality of the days. I love jeans and sweaters and bundling up in a jacket. The only hard part of the weather now is my bald head. It's a little chilly with out any hair and my ears get so cold. A few weeks back a friend sent out a plea for headgear for me and I was the recipient of some rather beautiful scarves. I look rather elegant in them and I know that one day my hair will grow back. There is comfort in that.

We are planning more home improvement projects. We are always planning more home improvement projects. We'll probably never be done working on this house and that's okay because we are doing something we love. Or rather, Richie is doing the work and I am watching. I am going to go with Richie to Birmingham, AL for a business trip next weekend. It will be a bit of a anniversary trip - 20 years - this last September 22.

Retta has organized meals for us and we have a hot meal coming almost every other day. It is wonderful. On the days I feel good I can usually muster enough energy for a meal, but not always. These meals have been a godsend and a great chance to see people that I don't usually get to see and thank them in person for their generosity. We are very, very thankful.

My thanks to each and every one of you for your prayers and your good energy. It's working, it's really working!
Love and hugs,
Maggie

A Milestone

2010-09-23T10:55:00.000-05:00

Richie and I celebrated our 20th wedding anniversary yesterday. What a good feeling. I have now known him for almost half my life. Although the last few years with cancer have been devastating, I am still happy to be where I am, with the people I am with, living the life I am living.

Sure, I would get rid of the cancer, but the rest of it, it’s all been a wonderful ride.

On my way to making more memories....
Love,
Maggie

Four Weeks Later......

2010-08-21T15:34:00.000-05:00

So much can happen in four weeks time.

School has started in my neck of the woods. Both M and C are settling in nicely to their new routines. They both like school. M loves the learning and the challenge. She is social and has a good group of friends, but is really driven by the learning. She is a natural leader and likes to be in control so the rhythm of school and the setting provides her with a great routine every day. She has her bad moments, even days, just like every other teenager, but for the most part, she loves school and is really happy to be home.

C, on the other hand, is much more social and likes being at school mostly because of the social interactions. He is intelligent, but doesn’t want to work as hard. If he can just power through something, get it over with and get back to his friends, he is happy. He is not a morning person and half the battle is getting him out the door with something in his stomach to carry him to lunchtime! I think he will have a good year though. The teachers and staff are targeting him and kids like him as leaders and encouraging them to step up. He is responding in a positive way and it is a pleasure to see him respond. He is such a generous young man and honest to a fault, I know he will do well.

So, it is nice to have everyone back in a routine. Richie and C went to Camp from Aug 2-12. Mom came to stay with me so that I could get through the Aug 3 chemo. She was a wonderful nurse and there really is nothing better than having your mama take care of you when you are feeling down. I am so glad she was able to be here for me. We had a wonderful visit, some really good talks and a regular cry every morning. I am so thankful and lucky to have such a wonderful mom.

Richie and C came home the same day Mom left. It was a great homecoming. They were road weary, but had had such a great time on the road and at Camp. I think their time together was very special. They both remarked on how nice it was to spend time with each other. They had great talks, hiking, boating, swimming, played games and ended each evening with a sauna. It was a memorable vacation.

M returned home the following day, August 13. I cannot describe how wonderful it was to touch her again. She looked just the same as she did when she left, and yet she looked completely different. She is even more self assured and confident. I am so glad to have her back home. Her Russian adventure was well worth it, but I think next summer we’ll encourage her to stay home, stay close to us, find a job and hang out with her friends.

On the cancer front, I with be getting another round of carboplatin and taxol next week. This will be my third round of this combination since July 13. I had a CTscan the week of July 19 and the results were a bit alarming. I have a new growth on my bladder. Dr. C asked us to come in to the office to discuss how to move forward. After I was given the actual results of the scan to read, I noticed a discrepancy from the CTscan results given in April. The upshot is that the April CTscan did not accurately report the growth on my bladder. Both Dr. C and I made a decision for me to take a break from chemo during this time. Had we had the correct information regarding the growth on my bladder, she would not have allowed the break and I would not have sought a break from the chemo. This is, of course, quite devastating and I am very angry. I would never, never have taken a break from the chemo if I had known there was a new tumor on my bladder. The only thing I know to do at this point is to keep moving forward.

With this new knowledge, Dr. C advised me to not travel. She thought it would be best to stay on the chemo schedule - no breaks. Richie and I decided she was right. We certainly didn’t need of repeat of July 2007 - another emergency in upstate NY. And I cancelled my trip to Idaho for river rafting. I didn’t need to be in an even more remote wilderness with a medical emergency. My chemo schedule would have also interfered with that trip, bringing me to Idaho roughly one week out of my infusion. My counts would have been low and I was just too damn nervous to put myself in that situation. The good news is that my CA125 is going down. It was 357 before the July 13 infusion and was 62 this past Tuesday. I really hate that CA125, but it gives me information and good or bad, that's what I need.

So the end of our summer didn’t really pan out like we had imagined. I am satisfied we made the right choices and I am hopeful that I will be able to do more next summer. I feel remarkably good for being back on this carbo/taxol routine. The worst days are the days right after chemo - nausea, headaches and the blahs, but the good days are really, really good.

Today, I am sitting in our living room, with M and C, watching a movie. C just made eggs and sausage for their lunch. The dogs are hoping for a few dropped crumbs and Opel, the new kitty, is watching from her perch on the couch. It is hot, hot, hot outside. Richie is in Wisconsin this weekend. I have most of my gang right where I need them and there’s not much more a gal can ask for than that. And me? I am content.

Many, many thanks for keeping us in your prayers and sending all that positive energy this way. We are also very thankful for the great meals we’ve been gifted. Those meals help more than you can imagine. Even when I feel good, I am incredibly tired. It’s hard to muster the energy to make a meal at the end of the day and your meals are very concrete help for my family. We are blessed to have all of you in our lives.

Love from all four of us,
Maggie

Summer Update

2010-07-18T11:19:00.000-05:00

It's been a while since I have updated you all, I find it hard to do because I end up crying through most of it, but here goes....bear with me.

It is Sunday morning and quiet around our house. C and Richie are out riding the trails on their mountain bikes. The dogs and kitty are sleeping off their morning meal. M is still in Russia, she returns August 14. She has moved in with a new host family. She had been having some problems with the first family. This was their first hosting experience and I am afraid they were ill prepared for the experience. She is now living with a younger couple, their three year old son and their small dog (with three new puppies). She sounds much better and I believe this will be a much better experience for her.

I am slowly recovering from my chemo treatment that was given on July 13. I knew I would return to treatment when I decided to take a break in March. And oh, what a glorious break it was! Although I have had short breaks from chemo since my cancer was diagnosed in July 2007, most of those have been because of surgeries, or tests or procedures that needed to be done. In March, my CA125 was at 16 and as has been the routine with Dr. C, it was time to do a CTscan to determine what might be happening internally. Things looked good and there was no rush to the next treatment. My hope was for a permanent break, but that was not to be. After a few weeks, my CA125 started to climb again. When I saw Dr. C in May she was ready for me to start chemo treatment again. My CA125 had risen to about 140 and she wanted me back in treatment. I wanted more time. I wanted to get M off to Russia and enjoy some more time without the side effects that have become my constant companions.

So, on July 13 I was readmitted to KUMed for the beginning of yet another chemo cocktail. This time around I am getting carboplatin and taxol. These are the first line chemo drugs for ovarian cancer. I was not very happy about this combination. I don't want to lose my hair again and the carboplatin is nasty and makes me very sick. But Dr. C believes that I respond well to the carbo and with my most recent CA125 coming in at 357, I need the big guns again to blast those poor misguided cancer cells out of my system. It is terribly depressing. I keep hoping that I will beat this nasty disease only to have those cancer cells keep growing and beating me up. I am very tired, finding it very hard to pull myself up this time. I had a nuelasta shot (white blood cell booster) on July 15 and while I know I will be glad for it when my blood count drops, the side effects are almost worse than the chemo side effects. Achy bones, muscles, and a constant headache are exhausting.

Retta has organized meals for us and that is a great relief. Richie is very tired at the end of the day and I have very little energy. So it is nice to know that there is food for all of us and bright smiling faces delivering it. I have rides to and from Kansas City organized so that I do not have to drive home after my 24 hours of chemo and that gives me a chance to visit with family and friends.

C is a good nurse. I think he is doing well, he has more faith than any of us in my ability to beat this. I am a very lucky mama to have such a believer in my corner. He stayed by my side all day Friday. I couldn't ask for a better companion.

The bright side to all of this is that Dr. C continues to encourage me to build memories with my gang. And we'll work the chemo treatment around that. A little depressing, no? But she is right and I want Richie and the kids to remember the good times and not the nausea, the achy bones, the neulasta shots.

So, we are headed to Camp the first week of August. Richie, C and his friend D, and I will make the great trek East. We plan on staying at Camp until August 11th. School starts the 12th and the boys will start a day late, but Richie's work schedule was difficult to manipulate this year. M will return on August 14 and then my world will be whole again. I know she'll leave home someday to start her life, but she's only 16 and she belongs here with us!

In September I am going on a whitewater rafting trip in Idaho on the Salmon River. My cousin Ellen will be along on that trip and I am looking forward to seeing her and to be with a bunch of other cancer patients and survivors in the wilderness. I know that sounds a little crazy but I think I get to be a little crazy at this point in my life! I can let the world fall away and take in the beauty of the experience.

Richie and I will celebrate 20 years of married life this fall and are hoping to get away for a weekend in late September or October. This will depend on how I am doing, of course, so my plan is that I will be doing well.

Enough of the sad talk. It's a beautiful looking day outside. It IS Kansas in July, 95 degrees and 99.9% humidity (:)), clear blue skies. I might have cancer, but I am not stupid, I am sitting in the air conditioned house and plan on staying here the rest of the day.

I hope all of you are doing well, enjoying your summer, loving your families. Keep the good lovin' coming our way. We accept all prayers, good intentions and love. We always need your love.

Maggie

Really!

2010-06-05T19:27:00.000-05:00

I have been having a hard time lately. I really don’t want to go back on chemo. I really want to be healed. I really want to have a life again. A life that doesn’t include cancer.

I really would like to begin again.

But that is not my reality - yet. I might be one of those women that has chemo for four years, five years and then maybe remission. I might also be one of those women that never has remission. I might never. I faced that reality last fall. Last September I faced that. It was brutal, it was awful. I cried for days. Days. I hated those days. There were many long talks, phone calls. I needed to tell each and every one of the people in my life, that I love, love, I needed to tell them personally that it wasn’t going to be pretty, or a beautiful story. At least not yet, not at that time.

And I am still not there yet. I really thought that with four months of CA125 tests scoring below 35 that I was on the way to good health. What I am is a chronic ovarian cancer patient. I will have this for the rest of my life. I will be sick from the treatment for the rest of my life.

BUT

I will also have periods of relatively good health while I am in treatment. And that is what I am experiencing right now. I feel good, I have low energy, but I don’t feel sick. No nausea, no overwhelming fatigue, no devastating side effects. Today I feel good. And isn’t that all we really have? Isn’t today good? I think so.....

I am content.

And have overused the word really.

:) Maggie

Chemo Free Days

2010-05-19T10:13:00.000-05:00

Today I am at home having a vitC treatment. I love these days. It is so nice to be in my home and in my jammies.

I am not watching the calendar, nor am I counting the days, but it has been almost six weeks since my last chemo treatment. I don’t know if that was my last treatment or not, but I do know that I love, love, love being off chemo! It feels so good to FEEL GOOD.

Last night we went to C's last band concert of the school year. It was wonderful. His instructor is a fantastic teacher and the band is talented and fun to watch. They did an excellent job. I was reminded that last year at this time, I was fighting my way out of the hospital so that I could attend a ceremony for Madeline’s 9th grade recognition. I remember telling the doctor, who was reluctant to release me, that I didn’t know how much ‘time’ I had and that I wasn’t going to waste any of it laying in an uncomfortable hospital bed missing my child’s shining moment. I was full of piss and vinegar that day, but I was also scared to miss any chance to see my babies shine!

Fast forward one year – I am walking the dogs for an hour each morning (about 3 miles or so), taking a good bike ride during the day and taking a spin with Rich after he gets home from work. I visit the library, the post office and sometimes the bakery:) on my brand new blue bike! Everyone deserves a little treat now and then! I start a spin (bike) class the first week of June and plan to start yoga again about the same time. I feel like I can do anything right now and I haven’t had any steroids in about six weeks! I sent in my application for the rafting trip yesterday and mowed the back yard. Last year, I was on doxil and could not be in the sun. I spent a lot of time sitting on the porch. While that was peaceful and calming, it is far better to be on the mower and planting flowers.

School is almost over. M leaves for Russia in less than six weeks. I had a good cry today about that one. She reminded me that I would spend the first week missing her, the second week getting used to her being gone, and then she’d be home in less than five weeks! She seems to have adopted my tendency to rationalize anything. I am thankful for that.

Charlie is finishing eighth grade and will be in high school next year. Yikes! How did that happen? I am looking forward to being able to concentrate on just Charlie. He is an amazing person and is often overshadowed by Madeline. He will have some time to shine while she is gone.

I go in to the hospital tomorrow for a short procedure. I am having stents put in my ureters. This will give the urologist a chance to look at everything, make sure my urinary tract is healthy and see what might be causing the hydronephrosis. I should be home by the end of the day.

I am looking forward to some warmer days, we’ve had lots of rain and not enough sun for my liking, but really I am happy with anything. I am just happy, it’s as simple as that. Send your good energy, prayers and thoughts my way this next week. I have another oncology check-up on Friday, May 28. I hope to share good news, but I am prepared for whatever life throws at me! I am doing my best to enjoy every day, chemo free or not!

Hugs,
Maggie

Good Life News

2010-05-05T20:00:00.000-05:00

We are busy busy busy LIVING right now. It seems that there is something to do every day after school and every night another errand to run. I love and hate this time of year. Spring is wonderful and the weather has been fantastic, but it seems school is busy cramming everything into the last three weeks. Madeline is playing soccer, two games a week. Charlie just finished up track season and there are band and orchestra concerts to attend. What am I complaining about?!? At least I am alive to do these things! Silly me. I will stop with the complaining. LIFE IS WONDERFUL!!!

I have had a three week break from chemo and have enjoyed the time off immensely. After my last round of chemo, it was time to reevaluate my treatment. Dr. C ran the usual blood work and I had a CTscan. The CTscan was negative, showing no cancer. What a relief it is when those results are given. I feel good, I look good, but will the test reflect that? They sure did this time! My CA125 (which was taken this last Monday) was 40. That was disappointing – up from 16 and totally going in the wrong direction. I let myself feel down about it, but Richie reminded me about how good I feel, how good I am looking and how well things have been for me physically. So I let myself feel sad for awhile. I think I am over it now….

The CTscan also showed that I have something called “hydronephrosis of the kidneys.” This is a swelling in the ureters, something usually associated with kidney stones. Dr. Chapman thought I would need to have stents inserted in my ureters and her staff was working to find time for the urologist to do this and for Dr. Chapman to do an pelvic exam under anesthesia. This is mostly why I got a three week break from chemo, the scheduling was difficult, but Dr. Chapman didn’t seem to be worried about me not being on chemo for that period of time.

Long story made even longer – the urologist was sure I did not need stents. He feels that this will be a chronic problem, a result of the re-implantation of the ureters into the kidneys from the January 2009 surgery. I seem to have a ‘back flow’ problem. I have an appointment with him tomorrow morning to discuss the results of a recent renal lasik test. This was done last week and is a nuclear medicine exam to test the function of the urinary tract. I hope to have a clear answer tomorrow regarding the ureters and what I can expect in that regard for the future.

The most important news though I have saved for last. Today I had my exam with Dr. C and she DID NOT find any cancer!! She spoke with Richie after the exam and she said we are on the high side of the roller coaster. I prefer the peaks to the valleys. She is a wonderful doctor and a pragmatist. She won’t give us estimations and guesses. She gives us hope though to help us through the good and bad and I am glad to be in her care. And her approach works for me...it helps me to appreciate each day and live it to the fullest. I will always have the ovarian cancer to contend with. It will always be a part of my life. How I let the cancer define my life will be up to me.

The most important thing I take away from today is that the good physical health that I am feeling is reflected in my blood work, scans and physical exams. The better I feel, the more I can do and the stronger I feel. Naturopathic and homeopathic medicine stresses the importance of keeping oxygen levels high by exercising and eating well. I am doing all of those things and in celebration of that I bought a new bike today. It’s blue and I love it. I rode it home from the bike shop and then Richie and I went on a short bike ride. I have been walking every day, but I love bike riding and I haven’t been out on my own in two years. It felt so good and I had a big smile on my face!

I hope you are all doing well. Thanks for the prayers and good energy. I feel it, I am living it and I wish I could hug each and every one of you right now to show you just how well your prayers have been working.

Love,
Maggie

On a precipice...

2010-03-31T13:07:00.000-05:00

I feel as though I am standing on a precipice. It could be the steroids coursing through my body. It could be the chemo I received Monday and Tuesday. It could be the general anxiety I feel during week one of chemo. I had my ninth infusion of carboplatin and gemzar on Monday. It was a strange stay in the hospital. I was more anxious than usual going in, hadn’t slept well in the days before, and generally felt strange.

I have been thinking a lot about continuing the chemo. I wonder how much longer this one will work for me, how much longer can I go with it before it stops working or becomes too toxic for my body. And I have been thinking about how wonderful it will be to stop chemo. It would be wonderful, after almost three years of continuous chemotherapy, to just stop. And that’s when I get panicky. My experience has been that when I stop chemo (for a surgical procedure or something), the cancer returns with a vengeance.

And then those thoughts bring me full circle. What if the cancer is gone this time? What if I have managed to find remission? Wouldn’t that be wonderful? The truth is that I really feel quite peaceful in the midst of all the uncertainty. For the last sixth months I have been living in the present, more so that at any other time in my illness. Since Dr. C gave us the talk late last September, I have resigned myself to the idea that this is a chronic disease. I accept now that today is the best day. Today I am content.

We had a lovely holiday season, no worries or sickness hanging over our heads. We managed, along with every one else, to live through this long, long winter. Even on the cloudy days we found things to be happy about. We went to the mountains over Spring Break, giving ourselves that long dreamed of trip. That trip we kept putting off until later. It was incredible. We had five full days. We got to have M and C all to ourselves. They were such great company. I really enjoyed spending so much time with them and having an adventure that didn’t revolve around the cancer.

Now spring is here and we are finding our way outside. Richie and his brothers built a new workshop in the back shed over the winter. He has dedicated workspace for his motorcycles now and is very happy. The kids helped me rake up all the leaves we didn’t clean up last fall. They didn’t complain once! We really enjoyed ourselves.

And here I am on the precipice. Things have really been going our way and maybe I am on the cusp of something good. Thanks for all the good wishes, for the hugs and good cheer when we see all of you! I love the words of encouragement and really do take the words to my heart. I know I am looking stronger and when you all recognize it, it gives me strength. So thank you, thank you all for taking such good care of us these past few years. The prayers and positive energy have really been working, so please don’t stop!

Love and hugs,

Maggie

Life News!

2010-03-02T13:32:00.000-06:00

My CA125 is down to 5!

This last year has really been a long, long journey for me. I am tired, but very happy. I am working hard at staying healthy, continuing my Vitamin C infusions, taking all my vitamins and supplements and watching my diet. I eat what I can when I am feeling nauseous and then eating the right things when I feel good. The coming of Spring has brought warmer days and I am getting out for a daily walk. This is helping me get physically stronger and then I can fight the cancer even better.

I go in to the hospital next Monday, March 8, for my eighth course of chemo. I don't know how many more I will have. The way I see it, I can continue like this for a while. I am sure I will have two more courses of chemo (Monday's and then my ninth) and beyond that I don't want to know. I need to live the life I have right now. If I live too far in the future, I might lose sight of what is right in front of me. I am not prepared to do that. So I am happy to keep going the way I am.

Richie, M and C are doing pretty well, too. Richie continues to be very, very busy with work. It seems they are just on the cusp of big things. This should be an exciting, but crazy year for him. M is leaving for her trip to Chicaco with her high school orchestra. They are performing and studying with the Northwestern Univ. Orchestra in early March. She is also a finalist for the NSLI-Y Study Abroad Program. We should know by the end of March if she was chosen to participate. If she gets her first choice program, she'll be in Russia for the summer. She'll have intensive language studies and live with a Russian family. I hope she gets her dream, but oh, I will miss her so! C is getting ready to start track. He's running distance and loves it. He's doing well in school and still loving his music. He started trumpet lessons this past fall. The trumpet added to drums and piano makes for a lively (and noisy) household. I keep telling myself that one day I will miss hearing all the noise. That makes it easy to listen to.

We're off to the mountains for Spring Break. Richie and the kids will get to go downhill skiing. I will get to visit yarn shops in the area. We finally decided to actually go on that spring break skiing trip we've been talking about. We'll be in Dillon, CO. This is a good, central area for some good, cheap skiing.

I hope you're all doing well. I hope Spring gets here soon. I think I will have the strength to get out in the yard more this year and that is a good feeling. Richie did some early Spring cleaning on the porch this past weekend and I can't wait to put all the cushions and pillows out there, plop my body down on the couch and enjoy the breezes. Thanks again to everyone for all your help and for the prayers and caring. I could not have made it this far without your help, I am positive of that, so keep all the good intentions coming my way for a while longer, if you could....I still need the help!

I can hear the geese heading north, time to get out for a walk!

Love and Hugs,

Maggie

Good News!

2010-02-04T14:09:00.002-06:00

I am at the VitC clinic for my second transfusion this week. This has been a busy week; I am working hard at my job fighting this cancer. This is week three of cycle six. A week off. Such a relief. I am very tired, the chemo is really adding up in my system. I had a rough go of it during course five. I was having lots of nausea and vomiting on day three. I haven’t had much in the way of vomiting since I started chemo two years ago. I know that is lucky, but this episode was scary and painful. When the time came for the sixth course, I was terribly anxious about a repeat. I did not have a similar bout of being physically ill and I am very thankful for that.

On Monday, I had a CTscan and then on Wednesday I had a physical exam. The results for both are very positive. The CTscan didn’t show any cancer and she wasn’t able to feel any nodules or growth on the physical exam. My CA125 was elevated a bit, from 11 to 17. My oncologist didn’t find that worrisome at all. So much good news to take in!

I will need to continue the chemotherapy regimen for the next three months. I would rather stop, but remission seems close, it feels close and I would so much like for it to happen. It seems I have come so far that to stop now would be idiocy. The flip side is that it might not help me at all, but I just have to take the chance that I might benefit from more chemotherapy.

I remember hearing a story about a cancer patient whose omentum (in the abdomen, it holds all your stuff together!) had cancer on it that looked like mold, like spores. If there is just one tiny cell, one single seed of that cancer still in me, it is worth it to try and zap it with the chemo. If it comes back, it won’t be pretty. I hate the chemo, but feel like it is what is keeping the cancer at bay. I won’t know when to stop, hope the doc will know and in the meantime will continue to do whatever I can to stay alive. It’s not only the cancer but also the treatment that keeps me in this viscous cycle.

I have not felt this optimistic in a long, long time, but I am tired. Very tired. We are all a bit tired at our house, a mixture of the cold we are all experiencing and dealing with the stress of this mess. But we are planning a trip to the mountains for skiing over Spring Break. I am looking forward to spending some time with just Rich, M and C. As they get older, they naturally are looking more to their peers and we see a little less of them. I try not to be too selfish about time with them, but I am selfish. I want to be with them as much as possible and it seems we have to take them away to get their full attention. I think a ski trip will be fun and no reason to keep putting it off till later, till someday. We are going to live the life we have in front of us right now.

I hope Spring hits us early here in the central states! I could use a little more sunshine. And hope for the same for you all.

Maggie

To Chemo or Not to Chemo

2010-01-19T10:52:00.000-06:00

I have made it through my fifth course of carboplatin/gemzar relatively unscathed this time. The side effects are getting worse and I had a very yucky 48 hour or so period in which I was miserable.

Today is chemo course six, day one. I was pretty anxious leading up to this course. Is this my last carbo/gemzar? I don't know. I saw Dr. Chapman this morning at about 8am. The plan for now is to have a CTscan and a physical under anesthesia and then we will meet to determine the nest course of action. I don’t know if this will all happen in the next week or next month, but for now I will just enjoy each day. I have Day 8 to climb over next Tuesday and until I hear from my chemo nurse, I don’t know what else or when.

I would like to believe it is the last and that I can go on to something less invasive, but what do I know (?), I am not the doc looking at study results, test results and the big cancer picture. But I am the patient and I do end up having the shitty side effects and living in pain and uncertainty. And that's not a whole lot of fun. But then the bad days pass and I feel good and I think, I could do this for a very long time. When the price becomes too steep, the side effects too persistent and if my quality of life becomes compromised, then I will look at these things in a different light.

We enjoyed a warm up in the weather and this has helped pick up my spirits. The holidays were wonderful and I try to remind myself daily about how far I have come since last year. Hell, I have come pretty far since July of 2007! I am doing the best I can at trying to live one day at a time. Time and hope really are good medicine.

One year ago, I was just out of the hospital and weak as a kitten. And the recovery process this last year has been long and sometimes very, very hard. But today I am good. I am stronger, healthier and happier.

There is a website/blog I have been visiting recently called Being Cancer. Here is the link. http://beingcancer.net/2010/01/14/ I really like it because it is written by a cancer patient for cancer patients and has links to lots of great information. The post for 1-14-2010 is a wonderful essay about being hopeful and learning from cancer. I urge you to read it! This site has also been linked to my blog, the administrator liked what I had to say, it was very flattering.

I send my good energy and hopes for you all to enjoy have a good winter. I am hoping for a little more snow, a couple of cold days which force me to stay inside, and then when the spring comes, I will jump into that season full of energy and both feet!

Hugs,

Maggie

Christmas Musings and Beyond

2009-12-29T09:15:00.000-06:00

We had a delightful Christmas. I was overly prepared and gave too many gifts to the kids and Richie. Every year I think I will tone it down and find alternatives to the gifts, to the wrapping paper. While I have been successful some years, this was not one of them. I did not have one medical issue the entire week and of course, that was absolutely wonderful. We even had snow falling on Christmas Eve. Pure bliss!

We had Richie’s side of the family over for soup and other fine foods on Christmas Eve. There were blizzard conditions all evening long, but we were all snug in our house, lovely music and conversation all evening. M and C disappeared with some of their cousins late in the evening for movies, everyone else was gone by 10 p.m. or so. I was so very excited to have my first Christmas in two years as a ‘healthy’ woman that I stayed up late to play Santa and didn’t get into bed until one a.m.

M and C were up at the crack of dawn (it seemed) and we sat and enjoyed coffee and gift giving for a good few hours. We ate way too much during the day; watched Richie and C run the snow blower, watched movies, read books. I was so delighted to give my family the gift of ‘not being in the hospital’ for Christmas this year.

Our celebrations ran all weekend long. We haven’t had snow, at least this much snow (6-10 inches and lots of higher drifts) in a long, long time. The kids went sledding on Saturday. It was a little bittersweet as they didn’t need us to go with them. M remarked that we’d just tell them not to do the things that teenagers naturally want to do so it would be better if we didn’t go with them. She was right, but it still made us a little sad. But then we realized we would have the house to ourselves. That’s good stuff, too!

Sunday brought us out to the country for cross-country skiing and sauna. I didn’t do either, but I had the company of lots of family and a few friends and it was a great way to end the holiday weekend.

Yesterday I was admitted to the hospital for my chemo. Course 5, Day 1. I had a reaction to the carboplatin during my last infusion and am now relegated to the hospital for any future carbo infusions. They will infuse my chemo drugs very, very slowly over a very long period. I should be home before the end of the day today.

I am starting to have some more serious side effects with the gemzar and if I continue to take the drug on Day 8, I will not have any ‘time off’ the chemo during my cycle. This just means that I will feel awful during each week and not really have a break or chance to feel good before the next cycle begins. UGH!

I saw my doc this morning. She was able to answer my questions regarding my gemzar side effects. I will continue with the protocol but learn how to work with the side effets in a different way. My CA125 was down to 10 when last tested. So, the chemo is working for me. The question is for how long and at what price.

All my love and thanks to everyone for helping us to get to the holiday without any problems. I cannot express in simple words the joy of being at home, with Richie and our children, for Christmas this year. It was for me the greatest gift to give and to receive.

Please send your good juju and prayers my way. I really need it during the next month or so.

Love and hugs!

Maggie

Happy Holidays!

2009-12-09T10:47:00.002-06:00

I have never been much for the holidays. I like holidays, I like that we have them, but it has never been important for me to get crazy about decorations, celebrations, setting the mood.

I am not exactly a Scrooge during the holidays, but long ago I decided that I did not like the commercialization of Christmas and wasn’t willing to participate at that level. We have always had fun with the kids, but we never let ourselves go overboard with presents and decorations. The past two Christmas holidays I have been incapacitated to some extent, either recovering from major surgery or preparing for it. This year, I am relatively healthy. This year, I am going to participate more fully in celebrating Christmas.

We have our Christmas lights up and glowing. Christmas decorations have been moved from the basement to the first floor, the boxes are ready to be unpacked. We are making plans to be with our family. I am almost finished shopping for gifts. I am planning our Christmas day menu. We are hoping for an uneventful, calm, happy day.

We are getting our Christmas tree next weekend and we’ll go together, the four of us, just like we always do. There will be nothing bittersweet or sad about this holiday. I will not get sick. I will not be admitted to the hospital. I will not allow it to happen.

I got myself out for a good walk yesterday. It was spitting a bit of icy rain, but the temperature was just right at 30 degrees. Twenty years ago when Richie and I first met, we spent all our free time exploring the winter wonderland we lived in. I pulled those memories out today and held on to them while I walked downtown. I am pleasantly tired from my exercise and reminded that I need to get out everyday for that fresh air.

I am in the city today for VitC and chemo. I anticipate increased fatigue from the gemzar, but hopefully not much more. I have two weeks off before the next chemo and hopes for an even lower CA125 next week.

Thanks to all for the good words, good cheer and help with all things related to our daily dealings with all things cancer. Happy holidays, good cheer! And love, lots and lots of love.

Maggie

Course 3, Day 1, Day 2, Day 3…….

2009-11-19T09:53:00.000-06:00

I completed course three, day one of my chemo schedule. I wish I could say, it was a breeze, but it wasn’t. It was a long day, lots of waiting. I waited for my appointment with Dr. C for two hours, which made me two hours late for chemo, which made the day two hours longer than I had hoped for. I am glad Dr. C takes her time with all her patients. She takes her time with me, I never feel rushed, and we had a good visit.

She used the term roller coaster today. My CA125 is down to 12 as of Friday, November 6. I have not been excited about sharing this because first of all, I am really fatigued. And second of all, the roller coaster ride is equally tiring. I am glad for it, really glad. It means I get more time. Time for living and time for being with all the people I love.

I will have a CTscan after my next chemo to see what those silly, misguided cells are doing. My physical exam today revealed that the one nodule she can feel is not so prominent any more. YIPPEE! That has all kinds of implications. The chemo I am on is shrinking the tumors, I will have less physical side effects from the tumors and it could bring some kind of remission. The less exciting news is that I have side effects from the chemo that are just as bad as side effects from the tumors. At some point, the tumors will become resistant to chemo and start growing again. Then I will start a new regime, if I feel I can handle it, and the ride will start all over again.

At this visit, I asked Dr. C for neupogen, to boost my white count to help ensure that I would not have to miss any chemos. Missing chemo treatments, while a break from the misery, always makes me anxious. Will I become resistant to the drugs if they aren’t delivered in the prescribed fashion? I think that ‘they’ don’t really know. It is such a grey area.

I had my first nupogen shot (day 1 of 4) on Friday afternoon. I didn’t feel too badly afterward, managed to keep busy and had a nice visit with Rich at the end of the day. After my shot on ‘day 2’, I quickly started to go downhill. First, we thought it was the effects of the shot, flu-like, achy muscle symptoms, and I spent most of the day in bed. Sunday morning it was determined I was dehydrated, but in my own stubborn way I refused to stay at the clinic and went home with the promise to drink, drink, drink.

By Sunday evening, I was at the emergency room, 103.5 temp and very shaky.

I was admitted to the hospital and after three days they sent me home. I had not had a fever in over 24 hours and although they cannot figure out exactly what was causing my fever, I am confident I will only get better at home. I will not take day 8 chemo (gemzar) because I am tired of feeling crappy and I so badly want to feel good next week.

We are headed to St. Louis for Thanksgiving with my family, it will be the first time we have all been together since my dad died and I am very excited to see all my siblings, nieces and nephews. And my mom, I love seeing my mom.

I want to do as much as I can while visiting. There’s the Cranberry Bowl and our annual trek to the movies (about the only day of the year I go to movies) and I get to spend five days with Richie and M and C. I would rather spend time with those three than anything in the entire world. The big plus is M will drive this year and what a great break that will be., M and C listen to good music and we start the trip listening to Alice’s Restaurant. We’ve been doing that for as long as I can remember.

So, things are looking brighter. Don’t they always after the dawn? I am in better shape this year than I was last year and I am alive, always something to be thankful for….

The Roller Coaster is Leaving the Station

2009-10-18T10:27:00.003-05:00

I visited the oncologist on Monday, September 28. I had a VitC treatment that morning and had had blood drawn, the usual routine. I knew before my visit that things were changing. I knew from the CA125 and I knew from my body. My CA125 jumped from 154 up to 1091 in just a few short weeks. I cannot put into words how devastating this was. I knew it would be elevated because of the surgery and irritation in my pelvic area, but a 600% increase was indicative of more than just irritation from surgery. I had a physical exam with the oncologist and this confirmed her suspicions that the tumor is growing again.

I started a new chemo regime on Tuesday, September 29. Two weeks on, one week off. My new drugs are carboplatin and gemzar. I had carbo during the fall of 2007. It is a first line drug for ovarian cancer and it makes me feel yucky. Nausea, flu like symptoms and fatigue are my new side effects. Week one I have both drugs and then week two I get just gemzar. Gemzar is another chemo used for ovarian cancer, and like any chemo it's nasty stuff.

For the first time since I have been seeing Dr. C she used words like 'aggressive' and 'quality of life.' Those words can just stand by themselves for a moment while I breathe.

Richie and I and M and C were just devastated by this news. Up until this point, I have believed I can reach remission. And I still believe that, but I will have to work harder to reach that and I am tired. I have been working hard for two years. I still have hope, but now I am faced with making decisions and having discussions with my family that I hoped to never have. As is my nature, I am working on finding the positive side of this, on finding the angle that will allow me the most peace. And here is it….

I never wanted anything more than to be a wife and mother. I had no grand dreams of a career outside the home. I knew that marriage and family were in my future. I was lucky enough to meet my soul mate, the love of my life and to have two beautiful children with him. I have lived a very happy and fulfilling life for the past twenty years. I have my dream, I am living my dream. How lucky am I? I think I am very lucky. I think I am very blessed. I have a very, very good life.

I am not giving up. I will continue to fight hard because I really want nothing more than to raise my children and grow old with Richie. But I would be a fool to not face the reality of the situation. It would be unfair of me to not prepare for my death – be it in two years or twenty. I owe it to Richie, M and C to leave nothing to question. How cruel would it be for them to ever wonder if they had done enough? I must help them find the peace to survive me. In order to do that, I have to find my own peace.

So now, while still fighting for my life, I must prepare for my death. I have a lot of decisions to make and questions to answer.

Nothing in life prepares you for death. Nothing. We live our lives being alive and thinking and doing, death is something that is always far off in the future. So I will live the life I have right in front of me. When I feel poorly, I will rest and relax and let the drugs do their job. When I am feeling well, I will run the errands, fix meals, do the laundry and be happy that I have the energy to do the things I can. I don’t want to miss the orchestra performances, the band concerts, ballet or Tae Kwon Do. This is a good life that I have and I am very thankful. I am thankful for my family and friends and for all you have done to help us through this very difficult time.

I have been feeling good this past week – it is my week off chemo. I have been busy doing things while I feel good. This past week we had parent/teacher conferences – C is doing well, a little bit of the class clown, but obviously intelligent and capable of good things - and college night at the high school. M is looking at a wide variety of schools and in her usual way is starting early, getting prepared and taking in information.

On Friday I had a VitC treatment. I had blood drawn that day, part of the monitoring that the oncologist’s office does, and we had such good news! My CA125, which was almost 1100 on September 28 has gone down to 78, after just one round of the new chemo! What a roller coaster! What a full life! And how lucky I am to be living it!

2009-09-22T17:10:00.001-05:00

Good things are happening in cancerville. I had surgery on September 2 to correct the problems I have had with my bladder since the January surgery. Recovery has been going well and, although I have been experiencing both the highs and lows that come with surgeries and physical setbacks, lately I have been feeling good.

Last Friday, I went to have a test called a cystogram. This test was to determine if my bladder had any holes in it. During the test I had a little leakage, but nothing compared to how bad it was with the bladder fistula. I saw the urologist in the afternoon and he removed the catheter. I was crying. The doc and his nurse were crying. He said I deserved some good news and I couldn’t agree more! It has been a long, long time since I have had control of my bladder. This catheter has only been in place for two weeks, but the removal of it ended nine months of problems I had been experiencing since my surgery in January.

This is such a huge relief and a lifting of the doom I had been feeling regarding my health and my ability to recover. I have had chemo in my system for well over a year and chemo makes me a slow healer. To me, the catheter was an outward sign of my cancer and I had been feeling a great weight with it’s presence. And now it is gone!!!!!

I believe the healing from the recent surgery also speaks highly of the overall condition of my immune system. I had been warned that I might have the catheter in place for three or four weeks. Healing in the two week time period gives me great hope that my immune system is doing it’s job and doing it well.

I see the oncologist on the 28^th of this month and at that time we will determine the next course of action. I will likely have a high CA125 because of the surgery and no chemo for the last eight weeks. I am hoping she will put me back on the doxil, I feel like I was responding well to that. She is also likely to put me on avastin. The doxil/avastin combination seems to be working well for other ovarian cancer patients and I sure would like to be in their club.

So I will enjoy my last seven chemo-free days and put my energy in to the garden. It is time to trim back the bushes, divide the bulbs and spread the mulch. Thanks to everyone for all your good wishes.

Love and lots of hugs,

Maggie

A Crazy Week

2009-08-09T17:00:00.003-05:00

This past week was one of those crazy weeks when life is busy and crazy and frantic. The kind of week that can't end soon enough.

Tuesday was a tremendously long day at the hospital. Wonderful Brenda picked me up at 5:30 a.m. for an early test, followed by another test, followed by waiting, followed by waiting, followed by another procedure. We arrived home at 6:30 in the evening. Exhausting!

Thursday morning, I was on the phone with my sister Kaki, on my way to KUMed. I was driving our 'new' car - '02 Passat wagon - and I decided to get off the phone as I was hitting the rush hour traffic and needed to pay attention. And good thing I did.

Right after I got off the phone with her, it felt like something hit the underside of the car and it started smoking. Luckily, there were very few cars around and I got off the highway and onto the shoulder immediately. I got out and looked underneath only to see oil pouring out of the engine and a big chunk of metal (a piece of the engine) sitting underneath the car. I looked back and you could see the path I took leaving the highway by the trail of oil I left.

We have only had this car for nine days and we haven't even registered it!!!! I called Richie immediately. Thankfully he had not made it all the way to Topeka yet and he reached me about 45 minutes later. He got me into KUMed and then turned around to meet the tow truck. Then he came back to pick me up.

We called the guy we bought the car from (without a warranty) and asked if he would be willing to come to terms with us. Neither one of us expected that he would - we knew we were buying a used car with no real history - it's the risk you take. Richie knows his stuff and this seemed like a great car. Much to our surprise he called back and offered to buy it back for 75% of what we paid for it. We decided this was the best route to go. Life is stressful enough and we don't need things to be any more complicated than they already are!

On Thursday we had good news, too. The results of the PTscan from Tuesday were clear. No cancer, nothing lit up, nothing new! I had had a CT scan on the 20th of July that showed a spot in my pelvis on the right side and my oncologist wanted to know what it was. So the tests on Tuesday included a PTscan, another CTscan and a pelvic under anesthsia. The results from the CT and pelvic on Tuesday are not in yet. and I haven't spoken with the oncologist so I do not have other details or test results yet.

Needless to say, we are very excited about these results. I was sure the cancer was back, even though I feel good, I hesitate to get too excited because this cancer has been so aggressive. I met with the Vit C doc today and she seems to think I am doing really well - and I am. But I am fatigued from the chemo and having some increased side effects in the way of skin rashes, but nothing more than that.

I also met with the urologist today and we set up a date for him to fix the vaginal/bladder fistula. The surgery is set for Sept 2. My mom is going to come up and stay for a week or so, or for however long she wants to. I will have to stay in the hospital overnight barring any complications that is. The urologist is confident that I will make it through this without any trouble, but there are always risks.

Richie has a business trip set for that weekend and I really want for him to go. His business trips are sometimes like vacations and this one definitely qualifies. He will be in Utah at the Bonneville salt flats for motorcycle racing. He has been invited to stay at the track, camp out with all the racers and their teams. We have family and friends around to help, but mom and I will probably just sit on the porch all weekend.

So, forgive my rambling, but I have had quite a week. I am exhausted from all the ups and downs. But my spirits rise when I realize that six months ago, I was feeling poorly and not very positive about the future. I am so much stronger now, both physically and mentally.

M and C go back to school next week. M starts at the high school and C in 8th grade. Time has gone too fast, it seems like they just started grade school a few years ago. Such a bittersweet time for parents.

Love to all and many thanks for all the good wishes,

Maggie

Time for an Update

2009-07-29T11:50:00.004-05:00

Today I am in KC for Vitamin C and chemo. This morning, as I sit in the ‘lounge chair’ with my ‘good medicine’ dripping in, I am anxious about the ‘other medicine’ this afternoon. This will be my sixth doxil treatment.

We met with Dr. Chapman on Monday. My CA125 rose again from 110 to 134. This is a much smaller increase than the last time, but an increase nonetheless and this causes great anxiety for me. I also had a CTscan on Monday, July 20th that had mixed results. The scan showed my chest and abdomen are clear which is great because it shows the cancer has not metastasized but there is a small (2cm) spot in my pelvis. This could be new cancer growth, an inflamed lymph node or scar tissue from my surgeries. The plan is to continue with the doxil and monitor the spot in the pelvis. I will have a PT scan sometime in the next few weeks (I hope!), which should give us more information.

I have also been dealing with another fistula, this time involving my bladder. I am working now with the docs to schedule an outpatient procedure to have this repaired. It can’t happen soon enough for me!

Generally, I feel really good. I am in pretty good spirits and my physical strength and stamina get better every day. I was so busy yesterday – and it felt so good – that it reminded me of the ‘good old days’. Mornings are my best time. I wake up early with Rich and then get as much done as I can until my energy starts to dip.

The side effects of the chemo are getting a bit worse. Doxil likes warm and moist areas of the body in addition to causing problems with the hands and feet. I am having problems with my feet particularly when it is hot. I do feel like this mild summer has been a gift. If the weather was more normal this summer, I would likely be more miserable. Right now, when the temperature and humidity rises, I feel tingling and tightness in my legs and feet. The rash gets worse the hotter it is and I tend to have swelling in the lower legs and feet at the end of the day. The rash is not itchy, just persistent and takes days to resolve. I feel a little nauseous during the second week after chemo infusion. Not so bad, I guess. Things could always be worse.

We are having a good summer. We are renovating the bathroom on the main floor. This has been a good thing for me physically because I have use the basement bathroom and the stairs have helped me build up my muscles! This project should be done by the end of August and it will be exciting to have a new bathroom! I am not a good decorator but I know what I like. I like things to be simple and there is nothing simple about renovation.

M and C have had a busy summer. They are always off with friends and gone from the house. They went to the Adirondacks for a week in mid July and came home different people. They spent the week with a large group of cousins, swam, kayaked, hiked and generally relaxed, all without the parents. It was heavenly. Rich and I missed them terribly, but managed to survive!

I head to St. Louis for the weekend to spend some time with my family and see an old friend, someone who was very helpful to us in NY two years ago. Then we are off to the Twin Cities for a quick visit before school starts. For us, it is almost an end to the summer and I can’t believe it has gone so quickly. I can look back and see what incredible progress I have made in getting stronger since January. I still have a ways to go. I can’t wait to be cancer free, in remission and working on rebuilding my life. I want to get back to school and working again. I am a more patient person now than I was a year ago, but I still can’t wait for some ‘normalcy’ again.

My heartfelt thanks to everyone for the help we’ve received. We are so thankful for the good wishes, the help, the positive energy and the prayers. And as always we send ours to you.

Maggie

Two Years

2009-07-03T10:00:00.004-05:00

Tomorrow is the second anniversary of my diagnosis. Two Years!!! Sometimes I just cannot believe this is my life.

We had a pretty crazy June, but the weather has been very nice and I have been spending a lot of time sitting on the porch. I really like the porch. I have been working hard on trying to get the insurance company to support my Vitamin C therapy. Lots of paperwork, phone calls, negotiating, begging, crying - and the porch has become my office area. Depending on where I sit I can watch the neighborhood (true Alice Kravits style) or I can hide and avoid detection - just depends on my mood.

Two weeks ago I came down with another infection and after a visit with the doctor last Thursday to remove my stents, I have been feeling really, really good. The low grade infection that kept recurring was really dragging me down. And then this past Monday, I had a visit with the oncologist and then my fifth chemo treatment of doxil. My CA125 is up to 110, doubled since last month.

I hate the CA125. I hate the anticipation of the test, the anxiety, the fear, but it is the standard used by the oncologist to determine if there is possible cancer activity going on in my abdomen. BUT...the CA125 can also be influenced by irritation in the abdomen unrelated to the cancer, like infection. So, my hope is that the increased number is indicative of the urinary tract infection and not new cancer growth. It is either one or the other. So, in two weeks time, we will repeat the CA125 and then I will have a CTscan. The roller coaster is warming up and will be leaving the station soon.

So, the Fourth of July holiday is not a very exciting time for me. It certainly is a memorable time, but I think I will spend the day following my family's lead. The kids will surely want to set off something explosive and I know the dogs will be a little skittish and I feel a little Alice Kravits time coming on.....

Relay for Life and life.....

2009-06-19T13:48:00.008-05:00

The Relay for Life evening was absolutely wonderful. Our “Tutu Bad for Cancer” team drew lots of attention, we looked BAD!!! One member of the group talked his way into bringing his little ‘canned ham’ trailer on site for us to use on our campsite. As it was the only trailer on site, it was easy to spot our meeting place!

I had a wonderful time walking around the track with my friends. It was a beautiful evening. We had a large group, adults and children, walk for the team lap and I felt so happy, so blessed, so lucky to be a friend to these wonderful people.

Stacey stayed out all night long with Molly and Anna Grace, Madeline and Lily walked for four hours in the dark of the night and there were tutus on the track all evening and into the early morning hours.

Thanks again to all of you who participated by walking or by donating. It was a success by my standards and although it was exhausting (for me at least), it was one of the best evenings I have had in a long, long time.

Early Saturday morning, Richie and I arrived at about 5am to pick up Madeline and Lily. Stacey sipped her latte, Molly and Anna Grace were still smiling. We returned to the house and loaded up the car for our trip to St. Louis for the Collins family reunion. We met in the northern Ozarks at my uncle’s summer place. It was a beautiful day with my mom, brothers, sisters, uncles and cousins. We spent the night in St. Louis and I woke up feeling more rested than I have in a long, long time.

Tuesday evening we made it to the first volleyball night at Jane and Steve’s. More good friends and a chance to meet the two new members of the volleyball crew. Whew! I continued to feel good – until yesterday! I am back on antibiotics for another UTI. I had a pep talk this morning with Mom, where I cried, she comforted me, we both cried and then we both got off the phone before it got out of control. I do feel better today, but zapped. The combo of chemo fatigue and infection fatigue are holding me down. There’s always tomorrow, right?

This past weekend was a big step for me. I haven’t had the energy to be out much. I am glad my friends and family see that I am doing okay. Physically I am getting stronger and emotionally I am holding my own. I am a little too skinny, but working on gaining weight. But most importantly I feel stronger and I feel better. I am working on building my stamina. I just add a few more minutes of chores or movement everyday. This can only make me stronger and more confident in my ability to keep moving forward.

Thanks to everyone for Relay for Life, for support, for your energy, for being my friend. I am a lucky woman and things will only get better.

Love and hugs,
Maggie

Tutu Bad for Cancer

2009-05-29T12:46:00.002-05:00

My dear friends and family,

My apologies to anyone who has already received an email about this. I am sure I don't have the email addresses for everyone who checks in on this blog, so here goes.....

I am here again to ask for a hand up and a hand out. My wonderful friend, Stacy Louise has organized a Team Backus for the 2009 American Cancer Society’s Relay for Life. It will be held here in Lawrence on June 12 starting at 7pm and ending June 13 at 7am.

The teams are usually comprised of 20-24 people who agree to raise $100 each for the American Cancer Society’s research to cure cancer. And then they have to have a team member on the walking course (here in Lawrence at SWJHS’s track) for that twelve hour period of time.

I have always received great support financially and more importantly emotionally from so many people in my community here in Lawrence, in St. Louis and beyond. I hope you can find it in your hearts to help again by sending in a small donation. Imagine if only 20 of you sent $5.00 how easily $100 could add up.

Our team quickly morphed from Team Backus to ‘Tutu Bad for Cancer.’ Because we are a bunch of 'last minute lucys' we are still assembling our tutus and I can’t share a picture with you (until after the event) you will have to use your imagination to see the 20 odd grown men and women (and some teenagers!) who have agreed to wear a tutu while walking around a track for an hour because number one, they can and number two, I think they love me a lot! I love them a lot too and am still humbled by their love and steadfastness.

My story is as familiar as any other cancer patient and so I will only say that I know that one of the reasons I am still alive today is because of the brave women who came before me and tried one or another of the cancer drugs researchers found to fight ovarian cancer. Much of this research is done with the support of the American Cancer Society. Ovarian cancer has not yet the cache of breast cancer (or the great marketing and branding) and we patients rely on people like you to help in ways like this to find a cure.

Please send your checks, money orders, (made out to Relay for Life) anything you can to me, earmarked for the Relay for Life event and I will pass it all on to the American Cancer Society. (email me separately for address!) It’s a good thing to do, it’ll make you feel better, and it will put a smile on my face. Those smiles are medically proven to help me survive. (I don’t know if that is true, but it sounds good and I am going to make it work for me.)

Thanks for taking the time to read this, you might help save someone’s life or at least give them hope for one more day and in the end that’s all we really can count on, isn’t it?

By the way, I’m doing well, still recovering and getting stronger. I’ve had minor setbacks, but nothing to really hold me back. My current treatment plan is the best so far and I am responding well. I have great hope for our future.

Many hugs and much love,
Maggie

My positive mantra

2009-05-22T10:07:00.003-05:00

You cannot receive your chemo treatments if your ANC (Absolute Neutrofil Count) is below 1.5. Yesterday my count was 1.3. My white blood count is just a smidge too low. So no doxil this week, maybe next. I am feeling a little down about this but am trying to use the number 51 as my positive mantra.

It also helps to stay positive when good things happen for your children. Madeline was awarded the Mustang Female Citizenship Award last night at the 9th Grade Recognition Ceremony. She was recognized by her peers as someone who "respects the individuality of their fellow students, looks for the 'good' in people, strives to achieve in school and extracurricular activities, speaks positively of others and cooperates with peers and teachers." Can you tell how proud I am? It says a lot to me about her mental health. We have had a rough couple of years here and yet she has remained true to herself and is doing pretty damn well. I sure love her.

Happy Memorial Day weekend. May all your memories be good ones.....
Maggie

CA125 news

2009-05-20T09:10:00.002-05:00

I had my monthly CA125 test on Monday and the results are stunning - to me. My CA125 is down to 51. I can't remember when it was this low before. I am, of course, riding high. Who wouldn't be? But I am also feeling a bit cautious. I will probably always feel this way. But I really like the sound of fifty-one. And I am going to ride that wave for the next four weeks - until the next test.
Keep that positive energy and the prayers flowing my way. It's working....
Maggie

Back on the Wheel

2009-05-15T09:01:00.003-05:00

Last night after dinner, Richie and I jumped on the tandem, Charlie got on his bike and we rode downtown. Charlie and Madeline switched places, she finished with ballet, and he on to Tae Kwon Do. We wheeled over to the Percolater for a loose gathering of individuals playing on the working bike sculptures our friend Eric has created for the annual Art Tougeau parade. It was one of the first moments since January that I felt myself bursting with energy.

I am sure the Vitamin C from earlier in the day helped, but the energy and excitement in the air was palpable. It really is Spring and the days I looked forward to way back in January are finally here.

This weekend will be a busy one. Madeline is performing in the end of the year Gala for her dance program with performances tonight, and three times tomorrow. There is a 'paint your car' party complete with the William Tell Overture (performed with car horns) tonight on the roof of the parking garage. Tomorrow is the official parade and after party. Charlie is busy with plans with friends and Saturday night will find us either in bed early or at a friend's housewarming. Sunday is a birthday celebration. The fun never ends.

Life never ends. You can step off the wheel for a while. You can watch it from afar. I prefer to be right in the messy middle of it, my hands and eyes and feet busy participating, but I will listen to my body and stop when I need to, rest and then start again.

On the cancer front, I am feeling strong, addicted to the VitC. I see the oncologist on Monday, will have blood drawn to see if I am ready for chemo (and another CA125.) Then on Thursday I will have the actual chemo. Madeline will go with me on Thursday. This gives us a chance to spend some much need time together. She can get some road time in for her learners permit. She can also see the VitC and chemo infusions and see just how innocuous the procedure is.

A year ago I was 'in remission', waiting for my baby girl to come home from Poland and feeling hopeful. Well, I have active cancer again, my babies are home, but I am more hopeful than ever. Life is good.

Maggie

Happy Mothers Day

2009-05-10T13:52:00.002-05:00

Happy Mothers Day to all the moms I know. This includes those doggie mamas, too.

Thanks to my mom for teaching me how to be a mother. Thanks to my sisters and sisters-in-law and all the women in my life who have taught me about love, patience and forgiveness and important things like where to find the best shoes!

I am blessed to have two wonderful children. They wish they had more siblings which I take as a compliment. I have never wanted anything more in my life than to be a mother and if I were to die tomorrow, I would be satisfied I had experienced motherhood.

My wish for my children is for them to be happy in their lives. I don't care if they are rich or poor, tall or short, skinny or fat, as long as they feel happy when they wake up each day. My illness has taught me the importance of the the little things, of slowing down and appreciating individual moments of the day. In spite of the chaos of the past two years, I am happier now than I ever was before. And I credit Richie, Madeline and Charlie with that. They have taught me what is really important in life. I am loved and I am capable of love. Who could ask for more?

2009-05-06T12:52:00.003-05:00

You know that friend you see infrequently? The one that always repeats the same information, the one who always complains or won’t quite read the signal that you can’t listen anymore, you need to go? Guess what? IT’S ME!!! I have decided I have ‘run-on of the mouth.’

I am so sick of listening to my cancer story. I am tired of hearing my voice saying the same thing over and over. I am tired of repeating my story. Can you imagine? It only took me two years to get here. I am a slow learner, like a dog at a bone.

Here’s the latest? Have I told you this before? I’m sorry. I seem to have blinders on. In March my CA125 was at 611. Eight VitC treatments later, many donuts denied, many pills (prescribed, of course) later my CA125 dropped to 91. It was like winning the lottery. It was winning the lottery. Something, maybe everything is working. I feel wonderful, overjoyed, even slightly self righteous about what a ‘good’ life I am living.

But I am tired of feeling like I am not living. Isn’t that a funny thing to say?

I don’t feel engaged with life, with the world outside of my comfortable four walls. I want my world to become bigger. The truth is that healing is not just about visits to the doctor, pharmacist, psychiatrist and infusion center. Healing is also about engaging in everyday conversation. It’s about talking with friends and strangers. It is in waking up to face the day with the challenge of the working world. I am not lonely. I am not depressed or sad. But I am tired of my own company and my own voice. Recently I applied for a job with the local library. Unfortunately for me, the scheduled phone interview came on the day I found out I had a bladder infection and a 104 degree temp. I soldiered on with the interview, but I probably sounded like an individual with a 104 degree temp. I can’t really remember because I was a little out of my head that morning. I am even considering responding to an ad for a customer service phone rep with the (gulp!) local media conglomerate. The truth is I am really good at customer service. I know how to talk to people who are usually anxious about something or need something (who else calls those help lines, anyway?) And I am especially good over the phone. Those whom I have worked with in retail and food service will remember my very unremarkable skills in those industries.

So, get ready world. Here I come again! I am so thankful for all the help, the notes, the gifts, the meals. We really needed all of you these last two years and I feel blessed to have our family and friends take such good care of us. I am glad to be feeling this way. It feels right to want to reengage with the world again. I am ready to ‘be’ something again. I know I am good at fighting ovarian cancer, and this doesn’t mean that you can’t ask how we are doing or how I am feeling. But when I tell you something you already know, let me know and we’ll move on to more important things!

Happy Spring everyone. I believe it is finally here.
Much love,
Maggie

Holding Steady!?!

2009-04-08T20:00:00.000-05:00

I haven't had much to say lately, which, I realize, is very unusual, but not much has been happening. I have been taking my meds, my supplements, my vitamins and eating well. I have been receiving twice weekly vitamin C treatments and visiting the oncologist, the urologist and the lab. Life is moving along at it's usual pace and I almost feel normal.

But yesterday, I had good news, news that needs to be shared and so share I will. I had blood drawn on Monday for a CA125. My previous results came in at 611 which prompted the oncologist to insist that I start chemo again. Monday's number was 620! As I have said before I really don't put much weight on this number - unless it's a good one - because it hasn't been a great indicator for me and it is just one of the diagnostic tools the docs use to evaluate the cancer. But 620 is like 611 is like 600. The most important thing is that it hasn't changed much. This means the VitC, the doxil (chemo), the diet and the supplements and vitamins are doing what they are supposed to be doing. They are holding the cancer in check. That is a really good feeling.

The nice weather today helps improve my mood and I am hoping for a long spring, a slow introduction into summer. I am thinking about trying to find a part time job, something low stress. It's time to reengage in the world. This is such a hopeful time and I am feeling it.

Maggie

Back in the saddle again....

2009-03-13T16:47:00.004-05:00

At my vitamin C infusion yesterday I met an angel. Her name is Olive and she was exactly what I needed and what I asked for when I prayed for help. I was feeling very shaky.

I had a checkup with my urologist Friday and a checkup with my oncologist Monday. I am healing nicely. I am not fully recovered from the surgery just yet and will have the catheter for at least another three weeks. But the time has come to return to chemo. I knew this was the plan and was not likely to change, but it is still depressing. I don’t know anyone who looks forward to chemotherapy.

I will go back on doxil, which I started way back in December before my latest surgery. Doxil can be relatively benign in terms of side effects or it can be nasty. It’s a crapshoot and I won’t know until it starts how my system will handle the side effects. I will be having a vitamin C treatment before my chemo and from what I understand that can really help mitigate the side effects of chemo.

I had a CA125 blood test of 100 in February. This made me happy, but the CA125 has never been a good indicator for me and I tried not to get too excited. And for good reason because Monday's CA125 was at 600. I am trying to focus on how I am feeling, which is GOOD. I feel strong.

Olive told me her story. She has been receiving vitamin C infusions for almost five years. She was diagnosed with ovarian cancer, had carbo/taxol (just like me) and her cancer was resistant to the carbo (just like me.) She had two years of doxil infusions and has been cancer free for three years. She wrapped me in her arms when we said goodbye and I knew she had been sent to help me. Olive is a survivor (just like me.)

So I am climbing ‘back in the saddle’ again. Chemo starts Monday, March 23. I will have infusions once a month and continue with the twice weekly vitamin C.

I am looking forward to the springtime and hoping for continued good health. As I write this, I see a female cardinal on a branch. This bird and her mate are here every spring. They nest in the grapevine on the north fence. I love to see the flash of color and know they have returned to our yard. It is a reassuring sign that in spite of cancer, life goes on.

Hello again!

2009-02-26T09:15:00.001-06:00

I realized it has been awhile since I posted. This is a good thing – no news is good news! I have been moving slowly through each day, trying to take things slowly and listen to my body. I am still healing and cannot begin a chemo treatment yet. I won’t complain about a break from the chemo, but as the days go by I feel anxious about not having the treatments. I worry about the tumor(s) growing again.

I continue to receive vitamin C treatments at KUMed twice a week. I am also taking vitamin and mineral supplements and am following a diet designed to stop feeding the ‘sugar hungry’ cancer. This approach (including chemo) is showing some positive results for some of the ovarian cancer patients in the study. I have great hope that I will be able to beat this cancer with this approach.

As I have gotten stronger physically, I have also regained my equilibrium and feel like I have crawled out of my depression. The first 2 -3 weeks out of the hospital were very hard. I was weak physically and mentally. As the weeks have passed, I have begun to believe I can make it again and that’s a great feeling.

This past week, I sent Richie to Bozeman, MT for a holiday. Our friends live there and they welcomed him with open arms. He had three days of skiing, four nights of good friends' company and came home relaxed and happy. Bozeman was good, good medicine. We are slowly, but surely coming back to our ‘normal’ lives. It feels good to be back among the living.

Madeline and Charlie are doing well – as well as anyone would be with a mom having cancer. I know they are sad and angry sometimes, who wouldn’t be? School and friends keep them busy and we try to help keep their lives as normal as possible. I love having them around. They are wonderful medicine.

I return to the doctor in about two weeks and hope to have more to share at that point. Thanks to all who have helped us to maintain in these past few months, this year. Times have been tough, but you have all made us feel wrapped in your arms. We feel very blessed.

Love,
Maggie

2009-02-06T18:45:00.003-06:00

I continue to get better every day. Yesterday I drove for the first time since December 17, 2008. It felt really wonderful and gave me a taste of the independence I crave and will have again soon. It was wonderful to pick up Madeline and Charlie and see their smiling faces. We went to the bakery for a loaf of bread and a treat to celebrate.

I am working hard to try and do something everyday, like make the bed, load some dishes in the dishwasher, feed myself. The good thing about the help we've been getting is that I didn't have to do much for myself. The bad thing is I could really get used to that - for a while anyway.

The last oncology visit was really uneventful. During surgery they found more tumor growth on my ureters. I had to have repairs done to the bladder and it has still not healed yet. I anticipate having to keep the catheter until the Spring. This is good and bad. I believe the tissue will heal so I am not afraid of any additional problems, but the catheter makes going out and about a bit of a chore. So, for now, I prefer to stay home, it's easier.

I struggle daily with the depression. Some days I feel very strong and know I am going to survive this cancer and other days, like today, I feel poorly and my mood reflects that. I either had a touch of food poisoning or a touch of the flu last night and didn't sleep at all. I had stomach cramps most of the night and day and stayed on the couch. This getting healthy thing is hard work.

Thanks for all the good wishes, meals, and help these last couple of weeks. We are so appreciative and know you are all out there pulling for us.

Maggie

Recovering...

2009-01-22T21:17:00.003-06:00

I have been home now for ten days and the difference between day one and day ten is just enormous. When I came home the first day I was still full of the drugs that I had been having for the previous three weeks. I had no stamina, no energy, no ability to do much for myself.

Today, I organized my clothes. Mom made me do it because she’s been doing our laundry and she couldn’t figure out where anything went in my closet. I took a good restful nap, walked to the mailbox and went to Charlie’s junior high band concert. He was fantastic! My goal since I came home was to be able to go to this concert and walk in on my own two legs. And I did. And I got to see my baby boy play his music. He was so nervous. He was also so proud of himself and of course, I cried.

Tomorrow I go back to the doc for surgical follow up and to establish a new plan. I am getting stronger every day and I am ready to fight again.

And now, what shall my next goal be? Kick cancer's butt, mmmm, I think so....

Returning to the Real World

2009-01-09T22:00:00.000-06:00

One week ago today, I had surgery to repair the various problems that have happened because of the tumors and various other things. I knew I would be having the fistula repairs and this was extremely important because they were causing incredible amounts of pain. What the docs didn't know until they got into the abdomen was the extent of more tumor growth around my bladder. So the surgery was longer and harder that we had imagined. The recovery has been no picnic either.

But today I really am feeling better. I have more color, more strength and a better smile on my face than I have had in a long, long time. I don't know when I will be released, mostly because my digestive tract is stubborn and until it decides to start pushing the old gas through, I wait. I sit, I read, I knit, I walk, I sleep, I sit, I wait, I walk. And none of this is a bad thing. I really need this quiet time for recovery. It has been extremely beneficial to have time to just 'be' and I think it really helps with the healing process. And the truth is that eventually, my digestive system will start working again, they will pull the NG tube, remove the staples in my stomach and off I will go.

Thanks to every one for all your prayers, good energy, kind words, and thoughts that have helped to carry us through these heavy days. When I look around at the patients beside me I realize how incredibly lucky I am. As hospital experiences go, this has been a good one, good nurses and good staff and a good quiet environment for me to recuperate in. Love and hugs and kisses to all,

Maggie

TGIF

2008-12-29T22:00:00.000-06:00

I never thought I would use the "TGIF phrase" except for celebrating the end of the work week and to show my excitement about the weekend. But I must use it here because, Friday, January 2, I will have my surgery. It has only been 12 days since the onc diagnosed my latest problem and said that surgery was the only fix, and it will only be 16 days since the diagnosis that I will be having the surgery. But these have been long, long days.

It was wonderful to have the break from the hospital and come home for Christmas and I am very thankful for that. That was my onc's first question today and I know she gave me a great gift. Now I will be readmitted tomorrow and will work on getting my whole body ready for this next surgery. Rich and the kids will be with me and I know many of you will be with me in spirit and prayer. I should be home from the hospital within 8-10 days from the surgery depending on how well I am recovering.

My best to all, thanks for everything, Maggie

A Very Fine Christmas

2008-12-26T22:00:00.000-06:00

We had a wonderful Christmas Day.

I think I was in my pjs and cuddling under a blanket by 3pm yesterday. That, to me, is the mark of a good day. We woke early for a family with two teens. They were so excited to rip into the gifts. The excitement surrounding the holiday was not as palpable for us this year. My recent setback and the resulting fatigue made it hard for me to get excited and I think it was hard for Richie and the kids to find their spirit in the face of hospitalization and surgery. But find our spirit we did. We were able to keep their gifts in the surprise category. They had asked for things, but we did say it would be a rather lean Christmas. And it was. We really didn't go too crazy, but Santa did.

So we opened gifts, then lounged, then ate, then slept, then ate, then lounged. Finally, we played Trivial Pursuit. That was the one thing I had really wanted to do this Christmas, and we did. As a matter of fact, we are still playing. I was good for about 5 rounds. We will pick it up tomorrow.

Right now, the surgery is set for Jan. 2. I think this is a tremendously long time from now and Richie was not happy to hear that date. We are hoping Dr. Chapman will be able to find time to put me in before that. We will keep everyone up to date to let you know as we find out more about these details.

Tonight the house is quiet. Charlie is on a sleepover, Madeline is working and Richie is putting a new window in Madeline's room. It is days like today that I feel the most content. I am in my favorite place in the world and all the troops are accounted for.

I'm Breaking Out!

2008-12-22T12:00:00.001-06:00

Well, not really. I am being discharged from the hospital today. Last Friday I had a test to determine where my intestines were actually compromised. It turns out it was my small bowel and as there is no immediate danger and my doc is going to be unavailable from Dec 23-27, I can wait just as well at home as I can in the hospital. This morning will be spent working with the social worker to set up home health aides to visit me daily, check my vitals and get my daily feedbag loaded up.

I will be on a liquid diet while at home. This will really help to keep pain at a minimum and keep me more comfortable. It will also make the transition back to the hospital pretty smooth, I won't need to 'clean out' again - I will already be prepared. My doc will be arranging her schedule so that we will have a surgery date set for sometime during the week after Christmas.

Thanks so much to everyone for your offers of help, we are lucky to have such generous friends! I know that Christmas dinner is spoken for and we had just finished Christmas shopping so we are sliding in just under the tag. My best wishes to all for a safe and healthy holiday season.
Love from a very happy gal, Maggie

A Merry Christmas

2008-12-18T18:00:00.001-06:00

This Christmas season is turning out to be a bit different than I had hoped for. I saw myself Christmas morning taking pictures of the kids as they opened gifts. I would induldge in a cup of coffee while listening to the fire crack and crinkle.

I think it is safe to say that I will probably be spending Christmas in the hospital. I was admitted on Wednesday. I have what is called a fistula or tear in my intestines. I will be having tests tomorrow to determine exactly where that tear is and then my doc will be able to formulate her game plan for fixing me up. I might even get my hernia repaired! I won't have any details until later tomorrow so I hope to put some information out there for everyone as soon as I can.

In the meantime, I am spending time reading, knitting and working on crossword puzzles. I have the computer to research more information as I get it and things are really not so bad.

Having had my first round of doxil and avastin, I should be experiencing the compromised immune system side effects over the next ten days or so, so it might be a good thing that I am being monitored so closely by the medical establishment. While I appreciate (and am flattered) that you might want to visit me, I think it would be best to keep our germs as separate as possible as this is not a time for me to pick up anything. I do not want them to postpone surgery for any reason!

My doc is encouraging the continuation of the Vit C infusions as they will help in recovery and healing. As soon as I can have food and drink again, I will be able to continue those treatments.

My gang is doing alright. This is no fun for them either but they are working hard to help out at home, get their own Christmas shopping done and have a good holiday. Please just put us in your prayers, send us your positive energy, chant for us, whatever your method is, include us in it. Things are not ideal, but we will be okay. We just keep putting one foot in front of the other and we will be okay.

A New Chemo, A New Routine

2008-12-16T17:00:00.002-06:00

Well, the new chemo combination is doing something.

I am not sure quite what yet. I was exhausted and cranky all day Saturday, moved to grumbly on Sunday, got my first Vitamin C therapy on Monday, and tired and uncomfortable all day today. The avastin and doxil should be making me a tired for 3-5 days after infusion and the Vit C should be giving me energy. The story of my life with cancer. "If it's not one thing it's another."

I am scheduled for another Vit C session tomorrow and a follow up visit with the nurse practitioner at the oncologist's office. Hopefully, they will tell me all the cramps and associated symptoms I am having would indicate the chemo is just doing it's job. That is what I think anyway and I am sticking to it.

Darling Richie found a wood stove for our main floor this past weekend and has installed it in the living room. The house is pretty toasty for the 18 degrees it is outside and I feel warm and comfy sitting here by the fire. I can't ask for more. Madeline and Charlie are home from school, the doggies are anxiously awaiting their dinner and we just need Richie to complete the picture.

Things are okay.

The One, Two Punch

2008-12-10T17:00:00.000-06:00

It’s official. I have not only one, but two new doctors and they are going to help me kick this cancer’s butt! (Sorry, Mom!) And here’s the really radical part of the equation, they work together! One supports the other. My head is still spinning.

Richie and I met last Wednesday with a naturopathic doctor who is working at the KU Integrative Medicine Clinic. I really liked her. I liked her manner, her directness, her depth of knowledge and her smile. I liked that she believes we can still kill the cancer! She is my kind of gal. We spoke for over an hour, she took a detailed history and ordered a huge amount of blood work done so that she can really look at my vitamin, mineral and nutritional level and devise not only a diet, but a supplement schedule that will support my immune system and help me survive not only the cancer but the chemo treatments, too!

I will also be getting IV Vitamin C therapy at this clinic – as soon as I have a couple of tests done that will tell them that not only can I take the therapy, but that it will work for me. The very basic idea behind this therapy – and this is not new stuff – is that after infusion to my blood system the Vit C or ascorbic acid will interact, twist and turn, drop a radical (or something like that) and meet my tumors with a load of oxygen that will cause the cancer cells to commit cell suicide. It makes me giddy just thinking about it!

On Thursday we met with the oncologist and I thought she was pretty tough, too. She was a nice blend of realistic and hopeful. I am a big fan of hope – it’s the best medicine, after laughter! – and she has surrounded herself with a great team. I felt a great sense of optimism after our visit. She has prescribed doxil with avastin and I begin this therapy on Friday morning. I am not exactly jumping for joy about this, but who would? I don’t want to take more chemo, but I know I must, so it’s time to put my head down and push forward. There are plenty of known side effects to both the doxil and avastin, but they are manageable. I just hope I am one of those people who doesn’t get very affected by the side effects.

So the next chapter begins and on we go.

Please know that we feel your presence in our lives. We feel your good intentions and your prayers sustain us. We really don’t need much – we have each other. This could have been a lonely, hard road. Instead it has been rough going with wonderful soft places to land when we stumble on the way. I know I have said it before, but I mean it, we are terribly lucky people in spite of the cancer.

Always hopeful,
Maggie

Thanksgiving

2008-11-26T12:00:00.000-06:00

“Your cancer has progressed.” What ugly, scary words.

My last trip to Dr. Mutch was exactly that – my last trip. A few weeks ago, we made the decision that when the trial drug patupilone stopped working for me, I would transition to KU Med. I have an appointment with Dr. Julia Chapman in early December. She comes highly recommended, not only from Dr. Mutch, but from many in the cancer community.

Let’s take a look at the positive, shall we? I get at least two weeks break from chemo!! While it is a little scary to not have the chemo coursing through my veins and to give the tumors a chance to grow, the patupilone was really dragging me down. The next chemo is likely to do the same, but I am hoping to work with the new oncologist and the doctors at the KU Integrative Medicine Center to help me build my strength back up.

The fatigue and lack of stamina has really been overwhelming. I have been unable to get regular exercise and that in combination with the chemo leaves me without much energy for anything. I may be calling in those offers of help and rides to KC in the future!

So with Thanksgiving a day away and the sun shining, I decided I needed to focus on the positive. What am I thankful for this year? I am thankful for Richie, Madeline and Charlie. I am thankful for my wonderful family – both sides, that continue to prop me up on the good days and make me laugh on the bad days. I am thankful for all my friends who have stood by my side and encouraged me to stay strong.

Chicken Soup

2008-11-17T12:00:00.000-06:00

I wish I knew if it was menopause, the chemo or just good deeds that make me so weepy lately.

We just received a gift of homemade chicken soup. When asked how I felt (strong until that point) I started getting teary eyed. What is it that makes this happen? Maybe it is the uncertainty of these days, the first holiday since my dad died is coming, the fact that I am only 44 years old and have cancer!

I head to St. Louis tomorrow. I have a CTscan scheduled for Tuesday and a visit with the oncologist and chemo on Wednesday. My onc wants to keep a close eye on those tumors because my numbers continue to rise, but the tumors seem to be staying the same. I don't know if I will be getting the study drug on Wednesday or something else. I have also been doing lots of research into integrative medicine. There is a belief by some in the medical community that good diet and exercise combined with supplemental support (alternative therapies) can help a cancer patient survive and lead a cancer free life. This makes sense to me and I am working on finding the right group to work with....

When the sun peeks out from behind the clouds, I feel hope return. I am really doing well considering the circumstances. And I want to thank everyone again for all you have done, have offered to do and will do when we ask in the future! Lots of love, Maggie

Election Day

2008-11-04T12:00:00.001-06:00

Every election day since Madeline and Charlie have been in our lives, we have taken them with us to vote. We did so again this morning and Madeline remarked that she will be voting the next time we go to a national election. WOW! How time flies...

Which makes me think, I have been a cancer survivor now since July 2007. I am not feeling too well today, but I am HERE and that is a big thing. We got to do our normal routine this morning and I feel so lucky to be able to do those things. So even though I don't feel my best today, I still have today and given the circumstances I think that is a pretty wonderful thing.

Love to all and thanks for all you do for us!
Maggie

Good News is the Best News

2008-10-21T00:00:00.000-05:00

My nurse from the oncologist's office called today with the CTscan results. There is no discernable change from the last scan. With my CA125 elevated to 1250 the last time, this is very good news. It is likely the CA125 was affected by the discomfort and irritation from the food posioning incident.

The CTscan results keep me on the patupilone course which is a good thing. Although the side effects are increasing and keeping me laying low, the patupilone keeps me from jumping back to the carboplatin/taxol regimen. Think February. If the patupilone continues to work for me, it gives me that much more time away from the nasty stuff and a better chance it will work for me next time.

We are all doing well. Madeline and Richie returned home last night from a motorcycle show in Alabama. Charlie won two trophies at a Tae Kwon Do tournament on Saturday. In spite of the cancer, we continue to live a normal life and it is important that we work toward that because this is our life.

2008-10-13T00:00:00.000-05:00

Well, didn't Roseanne Rosanandana used to say, "If it isn't one thing, it's another."

This morning dawned just beautifully. I think. I wasn't actually awake until 8am, but it was beautiful when I woke up. Madeline was sleeping, Charlie slowly waking up, Richie making plans for a bike ride and I was enjoying reading the paper.

I took Charlie to his religious ed class and ran to the grocery store for a few things. Charlie and I were home an hour later and Madeline met us at the door. Richie had a bike accident and was at the emergency room! Ugh! When will the madness end? The good news is he will be fine. He has a couple of stitches, a badly dislocated middle finger and some scrapes and bruises.

We are all tired and trying to destress, but alive and healthy (relatively speaking.) I hope for a better week this week.
Maggie

No news is good news

2008-10-09T19:00:00.000-05:00

I am home from St. Louis. The visit with the oncologist was a good one. No setback because of the food poisoning incident last week. There is no significant change - which is good - and although the CA125 results are not in yet, I feel good.

I have a sick child home today and she really wants her Mama to stay close and take good care of her and I am so happy to oblige.

Maggie

It's Always Something

2008-10-06T14:00:00.000-05:00

As is life isn't interesting enough, we had another adventure last week. On Tuesday, I began to feel sick about midday. By 3pm I was in the emergency room of our local hospital with severe pain in my lower back and abdomen. After a few doses of pain medication, the pain receded but what remained was a fever of about 1o2.

After consultation between the doctor and my oncologist, it was decided that I should stay overnight. That overnight stay was eventually extended and I wasn't released until Friday morning. It turns out that I had food poisoning. I hope to never experience that again. The pain was awful and it really set me back in terms of stamina and energy. Some good things came out of the visit. I now have the ear of two area doctors, an oncologist and an internist. I really liked both of them. I also had a PICC line inserted. This is a 'peripherally inserted central catheter.' I had really been hoping to avoid having this or a port inserted. It is hard to put into words, but I felt like putting something like this in would change the face of the cancer for me. In some ways it has and in other ways it is the best thing I could have done at this time. I can have blood drawn and medicine administered without having a new IV started for each incident. In short, it will give my veins a rest.

My mom and Kaki arrived for a weekend visit on Friday and we had a wonderful time. I have spent the weekend sitting and visiting and am all the better for it. Mom and I leave tomorrow after I have blood drawn, for St. Louis. I have another chemo treatment on Wednesday at 11am and should be home by the end of the day - keep your fingers crossed and send out a prayer. There is always the chance that the oncologist might decide I am not healthy enough for the chemo.

That would make me sad.

Love to all,
Maggie

2008-09-25T11:17:00.000-05:00

Things have been rather chaotic lately. My dad passed away almost two weeks ago, I had my fifth chemo treatment and have been to Houston for a second opinion.

My Dad died on September 12.

My fifth chemo treatment went as well as can be expected. My visit with Dr. Mutch revealed that my CA125 has dropped a bit from 942 to 837. He also feels the tumor has diminished in size. This is all very good. I am working continually to get better.

Richie and I went to MDAnderson in Houston for a second opinion appointment Tuesday. It was reassuring to hear from the doctor there that he would be following the same therapy prescription for me if I were his patient. I did not expect any different response from him and so it is good for me to know that I am at the right cancer center with the right doctor. I really like my doc, his staff and if I have to be away from my family in Lawrence, at least I am with my family in St. Louis.

So today I am feeling the beginnings of the chemo effects. I am a little tired from travel and chemo and life in general. I am not achy today (which I was last time) and I am looking forward to the weekend at home.

We are all doing well. The kids are busy with school, dance, Taw Kwon Do, drums, piano. Richie is busy at work and we have tons of projects around the house. So life is as normal as it can get with a twist or two. Thanks to everyone for the cards and good wishes.
Love,
Maggie

The dreaded chemo...

2008-09-03T00:00:00.000-05:00

I did not sleep well last night and I am feeling a little blue. The dreaded part of my chemo cycle has arrived.

This morning's forecast called for a warm day, but rain showers and cool weather this evening. I decided to open the windows. I would have been more comfortable with them closed. It was a long, hot day. I seem to be experiencing aching joints. I also am starting in on the diarrhea so I did not try to walk this morning. The combination of diarrhea and achy joints makes me feel a bit under the weather, a little fluish.

The lack of exercise makes me antsy. I just don't feel like I have done much of anything. And the reality is I did not really do anything today. I just have to remember that that is okay.

I saw the oncologist last week. My CA125 was back up to 942. The good news is that it hasn't gone over 1000 and that was the expectation in the beginning of this chemo regimen. I believe that the 642 from last time was probably a mistake. I was reminded that this is another reason that the CA125 test is not necessarily a good single marker for ovarian cancer. The best news from the visit was that my doc believes my tumors have diminished in size.

We discussed future treatment and it is clear that I will go back on the carbo/taxol regimen at some point in the future. He will probably add avastin or another drug to the mix (ugh!), but still believes I can beat this cancer. It feels good to have him in my corner.

So even though I don't feel good today, I hope to feel better in a few days and someday I will be cancer free again. And that makes me feel better.

The Power of Love

2008-08-18T07:00:00.000-05:00

Last night a group of family and friends got together to make some music, share some community and raise a little money for my medical expenses. It was a really incredible evening. I laughed and cried and cried some more, but they were all good tears. It was a really incredible experience, a testament to the power of community and the good people can do. I was so honored.

A few people asked that I put my speech up on this blog so that others who couldn't make it to the celebration would have a chance to know what I had to say. So here it is. My thanks again to all who came out for the evening, brought their hugs and good cheer and helped remind us of the power of love.

Good Evening everyone!

Thank you all very much for taking time from your lives, I’m sure your very busy lives, to spend the evening with my family and me. If love and good intentions could cure cancer, I would be the picture of good health.

My illness made itself known last year, and this spring we had a brief but beautiful remission. In June the doctor told us about the return of the cancer. Richie, Madeline, Charlie and I talked about our new reality. We choose to look at this as a chronic illness. I don’t like the word cancer – too many negative connotations, and I can live with an ‘illness.’ And I still feel lucky. My legs still work, my arms work and my head still works. And as Jane reminded me, my heart still works too! And tonight it is very evident my heart is working! It is about to burst.

I can’t talk without talking about ovarian cancer, which is called the silent killer. Because ovarian cancer presents few early warning signs, most patients are diagnosed when the cancer has reached an advanced stage. Some of the early symptoms of ovarian cancer are associated with less threatening ailments such as gastrointestinal or urinary tract disorders. Any of these symptoms that are manifested daily and remain for a few weeks should be a signal for a woman to see her gynecologist immediately.

Every year in the US over 25,000 women are diagnosed with ovarian cancer, and 14,000 women die from this deadly disease this year. In Kansas in 2004, approximately 360 women were diagnosed with ovarian cancer and about 300 women died. These are alarming numbers and unless all women are aware of ovarian cancer symptoms, the cancer will continue to burden women and their families for years to come.

I brought some information tonight (you can find it on the table near the entrance) and I encourage you to take a pamphlet or two, maybe a bookmark or bracelet. Read the symptoms of the disease and pay close attention to your health. There is no definitive test now for diagnosis, but by being aware of the symptoms and staying connected to your own health, maybe you can save yourself from this disease.

In regards to my own health, I am doing relatively well considering the circumstances. I am responding to the current chemotherapy, and my CA125 number, the marker for ovarian cancer activity, is going down! Generally, I feel pretty well for a gal with a chronic illness. I am tired from the chemotherapy, but I am always hopeful. I imagine I will have periods of active disease, which will mean chemotherapy, and then remission in my future.

And I have been unbelievably honored since the beginning of this journey to be witness as so many people have offered help, brought meals to our house, given extra hugs to Madeline and Charlie, mowed the lawn, donated money to help with the medical bills and smiled at me on the streets of Lawrence. It has been a humbling experience. I never knew how many friends we had. I know Richie and I are nice people, but never did I see us deserving this kind of response from people desiring to help our family.

Richie and I have said since July of last year, “It is what it is…” - we can’t change yesterday and we don’t know what tomorrow will bring, but we do have today. Today I would not want to be any place but here amongst my friends, and I feel unbelievably lucky to have all of you in my life. Thank you all from the whole of my heart.

Guarded Optimism

2008-08-09T01:59:00.000-05:00

Wednesday was a long day. I woke up at 4:30am to catch a 7am flight to St. Louis. My brother John picked me up and I had an 11am appointment at Barnes. Before I knew it, I was on my way back to Kansas City. After a long, long day it was wonderful to pull up to the house at 6:45pm and see Richie’s smiling face!

The chemo treatments are going well. I was told to expect my CA125 rise again before I would see any drop in the number. To my utter surprise, the number has dropped. I had a drop of almost 300 points, to 642. I keep trying to remember that this is just a diagnostic tool, I don’t want to put too much weight on it, but it does mean something. A drop means the chemo is working and my body is responding. RELIEF!!

I am feeling good, no nausea this time, and I am hoping this continues. I think the future looks bright again and I am excited to face the day.

I have today...

2008-07-31T22:00:00.000-05:00

I think about this cancer all the time. Sometimes I wish I had an answer as to why I got this cancer. I know I didn't cause the cancer. All the good psychotherapists tell you, "you didn't cause this to happen." Nobody is that good, they say. And yet, what could I have done differently? That is a really slippery slope. I won't go there.
I don't go there. Honestly, though, I go there. What should I have done? There's a lot riding on this. My husband, my daughter, my son....

I don't know if I would change the experiences of this last year. Certainly, I would change the cancer to something more exotic, more curable. But I have learned more about myself, more about my family and my friends, I have learned that I am surrounded by wonderful people, people that have helped me and my family and shown me true, true love. It has been a humbling and glorious experience. I am a blessed and lucky woman.

I choose to view this as a journey, as a chance to make changes in my life. I am so thankful. I almost died last year. Sometimes that reality comes into focus and I think, "I have today!" I am thankful for each day. I still get mad at my kids and impatient with the dogs. I forgot Tuesdays are trash and Wednesday recycling. Laundry piles up, bills need to be paid, errands to be run and the dishwasher emptied. But those are the days I get, days I might have missed. So the frustrations of my life before cancer are vague memories. The frustrations of life today are just that, frustrations that happen and are gone. I don't hold on to anything negative anymore. That is the optimist in me. I choose to hold on to the positive things that happen, and if they happen to be negative, I do my damndest to make them positive - and I am usually successful.

I feel an increasing sense of peace regarding my diagnosis and my future - mostly because I don't know what that future holds! We are born and we die, we don't get a choice in either. I feel prepared for whatever happens because I have had such a wonderful life until this day.

At our house we say, "It is what it is, we can't change yesterday, we don't know what tomorrow will bring, so we have today." I say that to myself every morning and every morning I choose to live.

I know is may seem simplistic or maybe too goody, goody, but I just don't want to live any other way.

I just don't want to waste any of my days being depressed or sad. I hope for many more years, but I will just take what I get, what each day brings me.

The reason for all these musings is that I woke up today, took the dogs for our walk, and saw the beauty of the day, felt the warmth of the sun and realized, "I am O.K., I am O.K." I am starting to let go, I can move forward. It is going to be alright.
Always hopeful....Maggie

Many, many thanks

2008-07-26T01:59:00.000-05:00

Here is some information I wanted to share with you. This wonderful group of friends has organized a gathering for my family and me. I can't thank them enough. What a great opportunity for us to get together, share some good cheer and positive energy with one another. Thank you, thank you.

Friends of the Maggie & Richie Backus Family are hosting a benefit concert and celebration to be held August 17, 6-9, at Liberty Hall, in downtown Lawrence. Local musicians will perform the songs of Neil Young and Lucinda Williams throughout the evening, with all proceeds going to the Maggie Backus cancer fund. All ages are welcome. A community of friends from near and far wish to help Maggie with her fight against cancer and to offer love and support to her and her family. In addition to a night filled with great live music Maggie will speak briefly on cancer awareness. Light fare will be provided as well as a variety of activities geared towards younger people with a silent auction of both real and imaginary items! Everyone is invited. Besides a grand celebration we also hope to raise enough money to help offset the costs of Maggie's treatment. A twenty dollar donation is suggested (kids at half price) but all are welcome regardless. Anyone wishing to participate or be more involved please contact us through BackusBenefit@yahoogroups.com .

Many people have been hoping to help us out with meals and we are very thankful for the offer of help. Right now, we are doing really well on the food front. My friend, Noelle, and her husband graciously organized a wonderful 'meal drive' for us. We have over twenty meals in the freezer ready for us to eat anytime. So, for now, we are full up with ready to heat meals and the good feelings that come with so many trying so hard to take good care of us. Thank you all again and again and again.

On the cancer front, I am feeling pretty good all things considered. I have managed to make it through the second round relatively unscathed. Fatigue is my constant companion, but I am managing pretty well - up early when my energy is good and down early when my body calls for it. I have had some bothersome trips to the bathroom and a little ache here or there, but it seems a small price to pay for being here and now, being alive and being able to touch Richie, Madeline and Charlie for one more day.

Richie and I aren't sure what we have done to deserve such wonderful friends, but we sure are glad you are all there. This would be a long and lonely road without you. Remember that we feel your help everyday and we are extremely thankful for it.

Here is a short note from Madeline:
maddie cut herself shaving, say your prayers.

Time Away

2008-07-21T01:59:00.000-05:00

Richie and I went to Ft. Scott Friday night for 24 hours of just us. Ft. Scott is about 90 miles south of here and we managed to make it down there in about two hours driving the secondary (and even smaller) highways. We drove about 150 miles on the way down there.

We used to do this kind of rambling all the time. Early in our courtship and marriage, with very little money to entertain ourselves, we would routinely buy a six pack of beer and head out of town to drive and look at the countryside. Sometimes we went with friends and made a true adventure out of it, but mostly we went alone. Those were really special days. Anyone who knows me and Richie knows how we both can talk - on and on. Imagine the two of us together, we never shut up and we always have something to talk about.

The joy of the kids and the craziness of life has made these rambling 'dates' come fewer and far between but we both still love driving aimlessly - as long as we are together.

We stayed at an old hotel in downtown Ft. Scott. It is a beautiful but sad looking downtown. There isn't much going on there. We had a lovely time, talking, catching up with each other and just being away from the chaos of our lives.

The trip home was an adventure as well. We broke down in Parker, Kansas. This place is so small I was surprised it was on the map. After about an hour, a few calls to Tony, and some patience - "it is what it is" - we were able to get the car going and made it home. The heat of the day and long car ride left me feeling a bit nauseous, a feeling I am getting used to now.

It was a delightful departure from our everyday life and another reminder of how wonderful our life really is. Coming home to the sink full of dirty dishes didn't even faze me - until I realized that was the one job I had asked the kids to do. And then the phone started ringing. The dogs needed food and attention. And then I reminded myself, I have this. I have a wonderful life full of people and animals and things that need doing. I have a life.

Two Down and I wish I knew how many more to go.....

2008-07-18T01:59:00.000-05:00

I had my second visit to the doctor and second round of chemo this week. At this stage and with the recurrent cancer involved, we did not expect to hear really great news. Typically what happens is the CA125 numbers continue to rise until you get more of the drug accumulated in your system.

So, a few weeks ago my CA125 was about 550 and this week's visit puts me at 950. It might go up another 200 or more points before it starts to drop. I continue to believe that this can be viewed as a chronic illness, but I sure wish that the numbers had dropped and this was going to be my magic medicine. I suppose it still can be. Patience, patience Maggie.

Today I feel a bit nauseous, just not interested in food. I also have some fatigue. It could be that it is late in the day and I am just tired. I am listening to my body and taking it easy, but also trying to at least do something each day. I have to keep moving forward and doing things just like I would in a 'normal' life. This is my normal life now. So today's project was framing the pictures we had taken of Mads and Char last year. That was a good project, they always bring a smile to my face.

Happy Birthday to Me!

2008-07-11T18:20:00.000-05:00

Today is my 44th birthday. I find it hard to believe. I still feel like a kid sometimes. I am going to hold on to that for a long time to come.

2008-07-11T01:59:00.000-05:00

Whew! Today I feel like I have finished the first round of the new chemo. I woke up feeling excited about the day, ready to do something, anything.

Generally, even in the midst of feeling bad, I still feel remarkably good. I may feel a little fatigue, a little nausea, a little stomach pain but I can still take a good long walk everyday, run errands, laugh with my family. I still feel incredibly lucky.

The joy of all this is that I can visualize myself surviving with this ‘condition.’ I have some issues I still need to work through, but who doesn’t? I can’t say it enough, I am a lucky person, I am alive.

This weekend we head to St. Louis for a big birthday bash. We are celebrating the June, July, August and September birthdays in my family. There are over 35 birthdays between my parents, siblings, aunts, uncles and cousins. It should be a great gathering of my family, something I always look forward to. There is always much laughter, many hugs and kisses and a great deal of love that goes around.

And my birthday is tomorrow, July 11. I will be 44 years old. I can’t believe it. I am sure it will be a good day. I can feel it in my bones.

One Year Later

2008-07-06T01:59:00.000-05:00

July 4 marked the year anniversary of my diagnosis. One year ago we were taking up temporary residence at the Faxon St. Luke's Hospital in Utica. It seems like a lifetime away.

It seems like that life and time belonged to another person. She and I had much in common, but I am the survivor. I am the one that lives. I have help from the established medical community and am working with others to determine which alternative therapies will help me to live more fully. I am the one who is alive.

I have managed to make it through the first round of patupilone with minimal side effects. I had some nausea and diarrhea (can you believe I am writing about that?!?)
We marked the day just like any other celebration: good friends, BBQ and fireworks.

Rich took some time off work and we have had a relaxing time enjoying the pleasant weather. As always, I am thankful for being alive and having the chance to celebrate anything these days. Life is good.

Day Five

2008-07-01T01:59:00.000-05:00

We survived the big birthday bash weekend. Charlie’s twelfth birthday was yesterday. This is a big birthday. Next year he’ll be a teenager and he is struggling with the transition to junior high. Given the chaos of this last year, we wanted to make this birthday a biggie. Madeline got Poland for her big day this year. Charlie got some great gifts, like the road bike he wanted, and a sleepover with three good buddies. They stayed up until 5am on Sunday morning. My apologies to the parents, but as Richie said, “This is what they are supposed to be doing!” We ended the weekend with a visit to his favorite restaurant with Tony, Alex and Simon – a boy couldn’t ask for a better time!

On the cancer front, the new drug I am taking is called patupilone. I don’t know why it is not capitalized like other cancer drugs, maybe because it isn’t a registered trademark name yet. I find this aspect of the whole drug industry rather interesting – must be some big money (and maybe egos) wrapped up in this. It makes sense. This is big stuff, hopefully life altering stuff involved.

So this patupilone is an epithilone. And this kind of antitumor medication is supposed to bind to the intracellular microtubules, which are essential to cell growth, and inhibit that growth. Right now, our hope is to stop the growth of the cancer.

It is day five since the infusion of the new drug. I was told to expect a reaction anywhere from 24 hours, but more likely 7-9 days, after the infusion. Over the weekend, I felt slightly nauseous, really just ambivalent about food. I am eating because I know my body needs it, but not because I feel particularly hungry. I could also experience diarrhea, abdominal cramps, fatigue and neuropathy. I am hoping for the best, preparing for the worst and really just living day to day. This is not a bad thing.

Today, I feel good. I have errands to run, children to rear and a rug or two to vacuum. Life is good.

Another try....

2008-06-28T01:59:00.000-05:00

Where to begin?

I began my second round of chemo treatments yesterday. I am participating in a research study for a new drug called patupilone. I had a 50/50 chance of receiving the new drug or another one called Doxil. The study is in phase III and is to determine the benefits/drawbacks of side effects for both drugs.

I was excited to learn Wednesday that I would be receiving the patupilone. Doxil has the typical chemo side effects, including nausea, vomiting, neuropathy and reddening of hands and feet. The patupilone's main side effect is diarrhea. Typically, I should begin to feel the effects within 24 hours, but more likely it will take 7-9 days after the initial infusion.

I will be traveling to St. Louis every three weeks for the infusion, and will be able travel there and back in the same day! This will do wonders for us. We are determined to keep our home life as normal as possible and this will really help.

It is important to remember that I may never be 'cured' of this cancer, but rather, it can be managed and I can have a very happy and fulfilling life in spite of it. And that is important. I am alive now and continue to thrive.

Stop and Smell the River?

2008-06-22T01:59:00.000-05:00

Stop and smell the roses. Such a trite line, but one that came to mind today. Richie and I rode our bike to the Farmers Market, a lovely habit we have formed over the last few years. Saturday mornings take on this lazy, happy quality that ease us out of the work week and into the weekend.

On our way home, we saw a blue heron on the dam. It was standing still, so quiet. We decided to stop. As we watched the bird, we noticed first one, then two fish fighting their way up the dam. Then we spied a turtle slowly plodding against a strong current.

I rarely take the time to notice these happenings. There is life all around me. There is good all around me. Stop and smell the roses, or the Kaw river water. Either way it was a beautiful moment in time.

Cancer Rears its Ugly Head...

2008-06-20T01:59:00.000-05:00

I am headed to chemotherapy next week. The cancer has returned. I am hopeful this next phase of my treatment will contain the growth and possibly even get rid of all the cancer.

We found on yesterday, June 18. It was not a good day. Lots of tears, a few laughs, a couple of glasses of wine and we have arrived at day one. I know I can survive this, it is a big bump in the road, but I am strong and determined.

I will be participating in a research study and will have more information regarding that next week. Keep me in your thoughts and prayers, I will do the same for you. And give my babies and Richie some extra special care when you see them...they really need it.

Moving Forward

2008-06-13T02:00:00.000-05:00

Good news! I am going to St. Louis next week for another CA125 and CTscan. I asked the doc this morning if any of my symptoms indicated a return of the cancer. Not necessarily, he said. I don't care either way. Just for today, I get to thing about this just as a hernia problem and not as a cancer problem. I like that. I am going to hold on to it all day long as I sit on my couch, knit and watch bad television.

Hernia, schmernia...

2008-06-12T19:00:00.000-05:00

When I had the 'second half of my hysterectomy' surgery in December, I had a few complications. I had a not so nice nurse, reactions to medication and multiple infections in my wound. I was sent home with a machine called a 'wound-vac' which was supposed to cut my healing time down tremendously. It did cut the healing time down, but it was a painful and laborious process to change the dressings. This had to be done every other day and was not something I looked forward to. And I later found out that using the wound vac increased my chances of having hernias.

I told my husband that if anyone ever suggested abdominal surgery again, I was not going to do it. Fast forward a few months, I found out I had surgical hernias, two of them. I was not happy with this bit of news, although it was better than cancer. So, the repair of the hernias is imminent, it should be done sometime this summer and I am hoping for a better outcome in terms of complications.

So far I have not had any symptoms from the hernias - other than looking a few months pregnant - until last night. I am pretty sure the back and abdominal pain, nausea and slight constipation I starting experencing are not a good sign. Let's hope we don't have another emergency surgery situation. Those are no fun....

And let's hope the surgeon can get me in sooner rather than later...

She's Coming Home!

2008-06-02T19:00:00.000-05:00

My husband's family has a tradition/history of private study abroad with a family in Poland. Our 14 year old daughter left on March 3 to spend some time there, learn the language, have an experience, etc. Tonight at 6:30pm she will return. I couldn't sleep last night I was so excited.

I have missed her terribly, it felt like a physical part of me was missing. She is a delight and any of you who know me, her or any one in my family know that she is a true treasure. I cannot wait to hold her in my arms again and touch her beautiful face! Sheer joy.

Take a deep breath...

2008-05-29T01:59:00.000-05:00

Since my cancer diagnosis in July 2007, my mantra has been, "It is what it is." I hope my meaning is clear, but for anyone who doesn't understand...this cancer is what it is. I cannot do much to change it. I can adopt a healthier lifestyle, make better choices in what I put in and on my body, but I cannot change the diagnosis. I must accept the fact that I have cancer.

In order to continue to live my life, I need to be positive. The slippery slope of depression is very attractive in some respects. I can easily see myself languishing in self pity, but I am choosing not to live that way. I have always been a 'glass half full' kind of person and I will continue to be that way.

This said, my latest visit to the oncologist causes me to pause and take a deep breath. My CA125 is back up again. The July 2007 levels were at about 800 and after eight (yep, count 'em, EIGHT!) I was down to 15. Those were good days, days of celebration. This time, though, I am back up to 150. What the hell is going on?

It could be the two hernias that now grace my abdomen or it could be....CANCER. A return of the dreaded cancer. Patience is required and this is something I have very little of, although I do believe I am getting better at taking that deep breath. What else am I going to do?