Saturday, December 10, 2011

Happy December

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!!!!!


Thursday, October 27, 2011


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.


Tuesday, September 27, 2011

River Discovery, Part II

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

Wednesday, September 21, 2011

River Discovery, Part I

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.


Monday, August 29, 2011


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.

Monday, July 4, 2011

Just a Tweek!!

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!

Wednesday, May 4, 2011

The Rhythm of Life

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.

Saturday, April 23, 2011

Quality or Quantity?

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 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.

Wednesday, March 16, 2011


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.

Wednesday, February 16, 2011

More Tests, More Chemo, Feeling Better

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.


Friday, January 21, 2011

Sunny Side of the Street...

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.

Friday, January 14, 2011

New Year Greetings

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,