Moving right along

I belong to an online support group of other ovarian cancer patients and survivors. In the last two weeks, we have lost three more women to this awful, awful disease. Please do me a favor and take a moment to think about those who are suffering. And I don't just mean suffering from cancer. Life is hard. But being alive and living can be so wonderful and rewarding. We are all lucky to be here and we are all going to die someday, but for those who leave before they have finished their business, it is a tough road to take. Just send out your good thoughts and prayers for those suffering in this world. It works, prayers and positive energy work!

In my life......I sent out this update to my family and some friends. Please feel free to share this. If I can help just one person avoid the devastation of cancer (and I think I have!) then I have accomplished a wonderful thing in my life!

I have had two rounds of cisplatin and gemzar at this point and I am responding well to the treatment. My cancer markers are coming down, and we are very happy with that. If only if wasn’t so nauseating and exhausting. It is the same old routine with me spending most of my time recovering from a treatment and then just when I start to feel better, it is time for the next round. It is so hard to choose to continue chemotherapy and yet so hard to stop knowing that I might just find remission or another few months to watch my guys explore the world. 

My new chemo cycle leaves me no days of ease. I have a 21 day cycle and am vulnerable to all kinds of nastiness for days 7-21. During days 1-7, I am nauseated most of the time. My weight is dropping a bit, nothing too alarming, but I hit 130 this week and have to get more calories. Ice cream is good!

Round two has left me with a UTI that really kicked my rear. After all these years, those infections can still sneak up on me. I spent this last Friday at the oncology clinic getting fluids. Good Dr. Stein didn’t even try to put me in the hospital. He knows how much I hate it, I do so much better at home, and he helped me get home by the end of the day Friday. Today, I am feeling better. Sore from the retching and trying to eat easily digestible foods so I can regain my strength. He will not have me start my third round tomorrow, smart enough to know I need a break.

We had a good Christmas, the four of us. There were lots of ‘goings on’ with nieces and nephews that came to town for the holiday. I was physically and emotionally under the weather though. I chose not to participate in many of the activities. There is no cure for this part of the disease. I am finally reaching my days of anger and despair. Why me? Why not me? It was good medicine having the three most important people in my world with me for days on end. They make me laugh and cry and they bring me such joy. I cannot fathom giving up just yet. Oh, how I love to be with those two! Richie even took a few well deserved days off and we spent a good amount of time just being with each other. They spoiled me rotten on Christmas Day. I have a hard time with all those gifts, it seems a waste to shower me with things that I may or may not have the energy or strength to use. I must view them as incentives and find the time and energy to do just that.

Madeline and I drove to St Louis for the first full weekend of the new year. Those nine hours in the car were some of the best of her visit. Unfortunately, a big winter storm was headed our way and we had to cut short the weekend, but not before we spent a great evening with the Murphys.

There is always so much to talk about and share. I feel like I am bursting with things that must be said, stories I must share and she has so much to tell me right now. She is blossoming. There is so much going on concerning school, internships, her future, to what she does and doesn’t want to do. She has so many opportunities and decisions to make and it is wonderful watching her make her stand and become more independent. It even felt good when she told me it was time for me to back off. She will ask for advice when she needs it, but otherwise she would like to make her own way. I admire her. I was not so independent at her age. We are so blessed to have her in our lives. 

Charlie has applied to a few different universities, two of which are in Philadelphia. He applied to both Drexel and Temple University. He also has mentioned some interest in continuing to pursue woodworking. He has been taking wood shop classes at LHS for the past year and a half. He is quite talented, in my humble opinion. He recently made the most beautiful bowl. He and Richie harvested an Osage Orange stump and then Charlie machined the stump down to a bowl. The wood grain and color are just incredible. We are so damn proud of him. Like his dad, he seems to be able to do many different things, and do them well. 

I have also encouraged him to take some time off and just sit out the first year of college. I wish I had done the same. (But am glad I didn’t for then I wouldn’t have been on the path that led me here to Lawrence and Richie!) I hope I am helping my babies the right way, but nothing would make me happier than to see them living in the same town, just miles from each other. I think they would both benefit from the support they could offer to one another. Maybe I have encouraged too much dependence, but I cannot think of a better place for them to be than with each other in these next few years. Whether I live or die during that time, they will need each other very much. 

Recently, my wonderful niece Sara, made a beautiful teal colored flag for me to hang on the front porch. We are using it as a sign to help everyone know when is a good time to just ‘drop by.’ If you can’t call ahead and find your self in the neighborhood AND the flag is hanging on the porch, we are up for visitors and hope to see you. But if the flag is not out, please reconsider. My alarm dogs make plenty of noise even if no one knocks at the door so I am trying to maintain some semblance of peace when I can. 

I hope all of you wonderful souls out there in our world know how much we love you and are thankful for your presence in our life. And to all of you special ones who have made dinner, helped Madeline recently and continue to pray for us everyday - thank you. I love you all - to the moon and back again, a hundred, million times. 

Back to that stupid cancer thing....

It's been so very long, months now since I update the blog, but I have been living. Enjoying life, dealing with cancer and generally not feeling like this story needed much more telling. I wanted to just be the old Maggie that I have been for some time with out feeling responsible to myself or others about keeping anything up to date. 

Summer was wonderful in the sense that Madeline was home and we all had an easy time of living together again. She was back for that first summer after being away at school. It seemed easier that the summer before when we were all so anxious about her leaving. This summer we set out our objectives and hopes for each other and that made our time together even that much better. 

The other part of the summer that wasn't quite so easy was dealing with the cancer. The study at the NIH ended for me in May. I didn't pass the first round of tests that determined whether or not the drug was working for me. As is always the case, when I have not been taking active chemo treatments, the cancer grows on and on. And while I had been busy visting the NIH, the cancer had grown around my anus and was causing me severe pain. 

Dr. Chapman at KUMed and I decided that I would best be served by not coming back to KUMed and to seek treatment with Dr. Stein in Lawrence. The next step was radiation. We have held off on the radiation for a long time. In the US, it is medical protocol to use chemotherapy first and then radiation as a last resort. Once an area has been irradiated it is dead and cannot then pass chemotherapy to new diseased tissue.  So I took some time during the summer to get the pain under control. After a family reunion in upstate New York and then a wedding in Colorado, we returned to Lawrence and I had 20 rounds of radiation. In my opinion, chemotherapy is ten times harder than radiation, but radiation also presents it's own horrible and miserable side effects. I was lucky to only suffer from some extreme exhaustion for a time. 

I then enjoyed my break from radiation. I went to South Carolina with my sisters and brother in law. I went to Philadelphia with Richie to visit Miss Madeline and I have been spending good times with Richie and Charlie while at home. And as always on this journey, it is time to return to the serious business of cancer.

My goal when I was first diagnosed was to make it to Madeline's high school graduation. That happened, it was wonderful and now here we are almost two years later and my new goal is to make it to Charlie's graduation. I want to watch my baby boyo walk up and receive his diploma and then watch what comes after. For Madeline, we had a big, old bash and while Charlie is not likely to ask for the same, we will still celebrate his accomplishments in whatever fashion he chooses! 

Back to the stupid cancer thing, I had radiation to control the pain the cancer was causing in my lower pelvis. That was very successful, and provided me with the break I spoke of. But the cancer was also growing on my liver at the same time and now, 2 months later, it is causing concern from Dr. Stein. In August, the ctscan showed an approximately .9mm sized growth, now I have three separate growths!! I have two choices, to return to chemo treatment or to do nothing. 

I choose to have another series of chemo treatments in an attempt to get to May 2014. Richie, Charlie and I will meet with Dr. Stein on Monday afternoon.  He is likely to encourage two different kinds of chemo and I will likely do whatever he suggests. If I can get another six months along, it's worth all the fatigue, nausea and aches that the chemo will bring. 

So, hang on to your hats, you might see me moving around with that sour face again. And that would be good, I hope to be walking around for a bit longer. 

Thanks again for the love, the hugs, the food. We're headed to St Louis for our Murphy Thanksgiving celebration. There's not much that makes me happier than to hang out with my mom and my brothers and sisters for a few days. And don't worry, I still have some living to do and we all know that there's great mystery in living, there's no telling what will happen!!

A Bit of a Pickle

We are slowly clawing our way into spring. Today is very windy, but supposed to reach the mid 70s! Today, Charlie is racing in Bizarre, KS (love the name of that town), Richie is working away on his Mercedes transmission and I am resting in bed. 

Last week, Mom was visiting and on Monday we recieved news of the death of a friend. Bo was diagnosed with cancer of unknown origin about a year ago. He was a great guy, and lived a really full and happy life. This last year, he lived even bigger and better while fighting for his life. The news was devastating. It hits so close to home for me and mine. I feel so, so sad and quite terrified, to tell the truth. 

Bo was married to Carol, whom I had become close to this last year. We found common ground with each other, two moms trying to hold it together. She and her boys will be fine, I know, because we have this incredible community of friends here in Lawrence. We won’t let Carol and her boys down, and I know the same thing is happening for me and my family. 

I have been on the NIH protocol now for a month. Things seem to be going well. Generally, I am feeling good. I have had three treatments, then this past week I rested. I started showing signs of side effects with the third treatment and was able to manage those with no difficulties. After another three treatments, I will have additional tests done and then a week or so later, will have my reevaluation. If the cancer has grown more than 20% I will not be allowed to continue with the trial. 

This past Thursday, though, I found myself in a bit of a pickle. I had let myself get dehydrated, developed a bowel blockage and had to go to the hospital early Friday morning. I got relief and was released late Friday afternoon. I have been resting, drinking water and trying to eat a bit.  I made the decision this morning to cancel this weeks trip to the NIH. After speaking with the doctor on call, I decided that it just didn’t make any sense to push myself. I do not feel very well, my gut hurts quite a bit and I haven’t been able to eat much so I am weak. 

I will have more information about the study and how this afftects my participation when I talk with the nurse tomorrow. This is really the best choice for me, although I am still coming to terms with it. I am worried that it will cause me to be dropped from the study, but the doctor said they will work with me. It’s all very frustrating - trying to get well - and having a roadblock in the way. Sigh.

Otherwise, all else is well. Madeline is finishing up her first year away, she should be home sometime in early June. We are looking forward to having her around for the summer. Charlie will finish up his junior year in late May. I have hopes for a good and busy summer with my gang, but I also don’t usually plan that far ahead. I have today and am thankful for that. Tomorrow will bring whatever it brings.  

Thanks again for all the love, the prayers, the good energy and all the other little and big things you all have been doing for us. This summer, I will mark the sixth year of my diagnosis. I know that I am here still in large part because of the love and support from every single one of you. And I thank you again and again and again.

love,

Maggie

On to the Next Adventure - the NIH!

Hi Everybody, Whew!! What a long, long week. Richie and I went to the NIH on Sunday, February 24th. Today is Saturday, March 2 and I feel like a month has passed in the last week.

We arrived in DC and were picked up at the airport by the always fabulous Sue!! Sue and her husband Rich were our hosts for the overnight stay. Sue is my sister from another mother. She made us feel so at home, so loved in their home in Washington! We came back from the airport to a glass of wine, pork tenderloin and the Oscars!! We all had so much to share and talk about, but after dinner we all fell fast asleep.  It was a hard night, both Richie and I tossed and turned in anxiety and worry about the next day. 

We arrived at the NIH the next morning at about  8:15, an hour earlier than they recommended, but with the DC traffic we decided to leave with plenty of time necessary for any delays. Getting through security and admissions were taxing enough, the rest of the day played out much as expected. I had labs drawn, waited, met with the first doctor, waited, more labs, waited, and finally after a long time, met with two of the doctors from the research team. I was offered a spot in the trial!!!! I felt very triumphant, and then we waited a bit more. By the time we left, I was so exhausted and tired from the process that I was just relieved to leave the NIH campus. 

As TJ had warned me, the campus was HUGE! And I am not exaggerating. Honestly, the entire DC area is just jam packed with humanity. I was excited to see the Capitol and the Washington Monument when we arrived the night before as I have never been to the DC area, but the morning drive to the NIH was overwhelming (read: traffic).  I am a homebody and small town girl by this point in my life and as much as I am excited about taking some time to enjoy the DC area, I found every thing to be overwhelming. 

Mid day Monday, we received word that the second leg of our return flight (STL to KC) scheduled for Monday night was cancelled because of the weather EXPECTED to arrive late Monday night in Kansas!!! AAARRRRGGGGGHHHH! I still have not developed any patience for these kinds of delays. I know, I'm slow about some things! I relied on Richie to take care of everything. And he did, but he was very anxious. Work just piles up, doesn’t go way, right?!  And Monday was exhausting. I cannot remember a harder day, except maybe the day I woke up from the first surgery. That was a hard day.

We made the first leg and spent the night in STL at Kaki’s, always an oasis in a desert. We had a wonderful lunch with Mom the next day. Richie rebooked our flights two, maybe three times that day. We had dinner with all the Murphys in a five mile radius and then John took us to the airport at 8pm or so. We got to our house at about midnight Tuesday, twenty-four hours or so after our original schedule. Home to Charlie, whom I had missed terribly. How could he survive without me?

I felt that I needed some time to really think about what accepting a place in the trial means. It may seem straightforward to some who want me to jump at this chance, but for me, I needed a good rest and then a chance to have a good conversation with Madeline and Charlie about how this would play out.  

The most important thing to remember is this study is an experiment. I will be involved in an experiment. I believe that I am doing a good thing. Firstly, I am giving my blood, my cells, my experience to this experiment. Secondly, I am hoping that if this drug doesn’t give me respite from my cancer, that the information that the NIH team gathers from it will be useful and helpful to these and other scientists as they work to try and find a cure for cancer - all cancers. The best I can hope for is that my cancer responds to the new drug and stabilizes. The worst is that it doesn’t work for me, but I still have options.

AND I am hopeful still. How can I not be? I have everything to live for! I have Richie, Charlie and Maddie! I have Mom and the Good Guys, my Backus’ and all my friends.  I want to see all your faces again, and you know how stubborn I am?

I also found out I had a UTI once I arrived home. I am taking a lovely antibiotic right now and have been feeling better day by day. Richie is off for a cross country ski adventure with his brothers and a few good friends. Charlie raced today, had a good experience and seems happily exhausted, or exhausted but happy. I am not sure which one, but I love that he’s happy. 

Mads will be home in less that a week for Spring Break. And then Sunday, March 10 I will return to DC to start the study. I will spend two days in the hospital at the NIH. I will be home on Wednesday, March 13. I will go the NIH regularly, once a week for three weeks and the fourth week off. After two months, I will know if the study team thinks the trial drug is working for me. I can manage two months, easily. 

That’s my story and I am sticking to it! Aren’t I original? I have always said that it is so much easier having a plan. Often though, having a plan means that I am on chemo, but it is still much easier. I feel a great sense of relief knowing that I have a plan. 

So, thanks again, all you darlings!!! You cannot know how happy I am to have you in my corner. I think about all of you and pray for us all every day. As long as you, my caretakers are good, I am good.  Spring is coming and that will only make life more interesting.

Love you,
Maggie 

Hi Everyone, In just days, Madeline will be home from school for winter break, Charlie will have finished his first semester of junior year and Richie will take some time off. I am very excited. Christmas promises to be lovely again this year. I started back on chemo in early November. I was looking forward to starting the trial for a new drug, but didn’t pass all the tests required by the study. I have been having trouble with my kidneys for over three years now. I have a condition that is called hydronuephrosis. My ureters (which connect the kidneys and bladder) swell and restrict the flow of urine from kidneys to the bladder. For the past couple of years I have gotten by with uretal stents implanted to keep the ureters open, but this summer it became clear that chemo has done too much damage to my urinary system to continue without some outside help. On November 5, I had percutaneous nephrostomy tubes planted in my kidneys. I now have a line coming out of each kidney so that my bladder is bypassed. Now I truly am a bag lady - I have three of them! As I write this I have a colostomy, and two urine collection bags strapped to my waist. It is really not as bad as it sounds, from my point of view, because I am alive. It was becoming increasingly difficult to urinate in a normal manner. I had some really unfortunate problems with pain and cramping in my bladder and ureters which was getting worse on a daily basis. The tubes have dramatically changed this situation. I am still using pain medication but much less of it. I can tell you that I hate oxycodone and the haze it puts me into. It makes me stupid and restricts so much of what I can do on a daily basis. And I can tell you that without the oxycodone I would find it hard to function daily. So to be able to have less pain and think more clearly is a gift. I had thought I was prepared for the tubes. They had been a part of the medical discussion for over three years and I had time to think about them, but I was not prepared. The physical pain was difficult enough, but the emotional and intellectual adjustments have been overwhelming. A month or so later, I have a routine and know what kind of clothes I can wear comfortably. I am vain and don’t want to ‘share’ these bags visually, but I am thankful for what they are doing for me and for the reprieve from pain. The only down side so far has been that I am likely more vulnerable to urinary tract infections. The best I can do is to use good hygiene and stay as healthy as possible. Everyday I feel a little bit better and a little bit more thankful for still being alive. Sometimes I am just amazed when I realize that I have beaten the odds and I am still here. My next goal, baby steps, remember, is to watch Charlie graduate from high school and help him move on to his next place in life. I had a long day in KC last week. A morning appointment with the urologist to check my incision sites, tubes and bags and schedule upcoming ‘maintenance’ appointments. In the afternoon I went to see Dr. Chapman. She is pleased with how I am managing and we had a good visit. The best news was that my CA125 is now headed in the right direction. At the end of October it was 615 and last Thursday it was down to 520. I feel like the turtle in this cancer race, slow and steady. Over the weekend, a dear friend came to visit. She was so important to me in those early days with Charlie and Madeline. We helped each other with work and child care. There were three of us then, Carey and Laura and myself, and the friendship of our boys spilled over to us. We had such a wonderful visit and they both gave me such joy - in seeing them and sharing our memories. It was a wonderful gift to have time to share with them! I will close with this lovely poem by Raymond Carver. It speaks to me on such a basic level. I think every day of how lucky I am. I have lived a wonderful life to this day. I have lived my dreams and know how lovingly I am held by those I love and who love me. Is there anymore that any of us could ask for? Not to me. love to you all, Maggie Late Fragment And did you get what you wanted from this life, even so? I did. And what did you want? To call myself beloved, to feel myself beloved on the earth.

It’s a beautiful Saturday, the sun is shining, 70 degrees, a light breeze. Richie is working in his shop, Charlie is out biking and I am taking IV vitamin C. It seems like ages since I have sent out an update. Madeline graduated from high school in May. We had a wonderful celebration, three graduates celebrating together with their friends and families. Our backyard was filled with music, laughter, a bouncy house and lots of food. Mom, Mary, Kaki and Chris came for the celebration and helped a bunch in getting the house cleaned and ready for all the party goers. Madeline came down with a cold that day and felt pretty lousy, but it was really a great celebration. Even though it was her day, I was secretly celebrating too because I made it to her graduation. Five years ago my goal was to get to this place. It has been an exhausting and long haul to make it this far, but I made it, and now my new goal is to see Charlie graduate and settled on his way to a happy future. I know I can make it. We had a great summer. We managed to get in some vacation time and went to Backus Camp in the Adirondacks. We drove up with Mads and Charlie leading the way. They were so excited to be back there. Richie and I were a little more nervous. I had not been back since the fateful summer of 2007. I was actually more scared than nervous. When we first walked into the woods at the top of the circle, I burst into happy tears, so delighted that I was there. Camp is very special to our family, it holds so many good memories for us and I wanted this visit to bring the same feelings. And it did. I wasn’t able to do as much physically as I wanted to and it took some planning to deal with my colostomy while there, but in the end I settled in nicely and we all enjoyed relaxing, swimming, sleeping and just "being" while at camp. On the way home, we took our time and visited Aunt Jean in Skaneatelas, NY. She took such good care of us five years ago and it was good to go back and see her without the haze of cancer surrounding us! We continued west to Chicago, visited the art museum and celebrated Charlie’s 16th birthday with deep dish pizza. When we arrived home, we hit the first day of the 100+ degree weather that stayed with us all summer. Summer was hard. The weather and the anticipation of Madeline leaving for college made for some stressful days. In early August, we got word that the chemo drugs I had been taking since September 2011 were not working any longer. The next week I needed a blood transfusion and after that, I decided to take a little time off the hamster wheel and let my body rest and recover. In late August, Madeline and I flew to Philadelphia and I helped her get settled in at school. I said good bye to her at 5:30pm on August 29th and haven’t seen her since. We did skype one day, but it’s just not the same. She is doing well. After a bout of homesickness, she was able to adjust her schedule, take some stress out of her days and she seems to be settling in rather nicely. She is very busy, but sounds very happy. We are hopeful. Charlie is blossoming without his sister. He is enjoying life as an only child. He is really working hard this semester. His grades are great, he is having fun in marching band, and he has his first job. He is working for good friends at their hardware store and I think he is having a good time learning new things. Even though I am enjoying this chemo break, I cannot stay off the stuff forever. I won’t spell out what would happen. We all know what it means. At my last visit, Dr. Chapman gave me a few options to choose from for the next step. One of the options would be to continue traditional chemo with avastin and cytoxan. I have been taking the avastin for about 11 months now and even though I was not excited about using it in the beginning, I have suffered none of the really horrible side effects. Cytoxan is an ‘old’ chemo drug, one of the first treatments given to ovarian cancer patients. My other option was to participate in a phase one clinical trial. I sent all the information regarding this to TJ and after discussing it with him, I have decided to try the trial. I don’t start that until Nov. 1, so I am still off the hamster wheel and feeling pretty good. I don’t have much anxiety about the trial or about being off chemo for right now. I have been ‘on’ chemo for so long, that this break is really delightful. I have a few screening tests for the trial that have to be done in the next month, but otherwise, I am working on things around the house. I have been sewing, painting, yoga, exercise, eating right and well and sleeping a lot! The fatigue from the chemo won’t be gone before I start the trial, but it’s not as all consuming when I am in active treatment. So, things are, in a sense, pretty wonderful. Things are as they should be. Cancer has taken so much, directed all of our decisions for the past five years, that in the absence of treatment, I was a little lost. But I am easily finding my footing and enjoying the beauty of each day. I am trying to get excited about knitting again - I can’t actually think about it - and I recently finished making a quilt for Madeline. Our life is good. I try to remember that we all have stress and burdens to carry, mine might be a little heavier than yours at the moment, but we are all doing our best to live in stressful times. Many thanks to everyone for your help. Dinners, prayers, good thoughts and energy - we feel them all. I know I would not be here today without all of you and what you have given to us these past five years. Thank you for holding me and mine in your hands and caring for us. I am so blessed to be here and to have all of you for my family and friends. Here’s to many more years and lots more laughs. Love, Maggie

Well, it’s been quite a while since I updated you all on what's been happening in our world. This is a very good sign, you know the saying, ‘no news is good news’ is really true. 

The last time I updated was early January. We were all ‘suffering’ a rather mild winter. I have to admit that I loved it, but I was also anxious most of winter waiting for that big storm to hit. It also, of course, made me think of all the global warming theories and to try to take a look at my own little corner of the world, checking in to see what I can do to make it better. And I did learn one really wonderful thing....it is a great distraction from the vagaries of our daily life with cancer. I didn’t spend much time this late winter nor have I spent much time this Spring thinking about cancer.  It’s been rather delightful!

Last Thanksgiving, I asked my lovely sisters if I could go on a vacation with them to Florida in the Spring. They have been going for 10 years now to spend a week lounging in the sun and going to the St. Louis Cardinal spring training games. For those of you who know Mary and Kaki, you understand how important this trip is for them. And now for me too! I have always wanted to go, just to spend some time with them, not so much for the baseball. But I am getting hooked. It’s only taken about 43 years! So this year I went to Jupiter, FL with my mom, Mary, Kaki and my cousin Peggy.  And I had a blast.  It was so much fun to see them in their natural habitat! Their knowledge of the game was wonderful and I learned a lot. I know how the game is played and most of the rules, but for the most part it was a much more intimate setting and I could really understand why they are drawn back year after year.

We spent equal amounts of time lounging in the sun, reading magazines, books and getting prettier and funnier as the days passed (thanks for that one, Peg)! I even came home with a bit of a tan, or my freckles just got more pronounced. I had such a wonderful time. Laughter and family are such great medicine. I have made that a priority in my treatment and I think it really pays off.  If I make the cut for next year, I may be able to go again. I am waiting for the customer service survey to fill out and will let you know if they have chosen for me to attend Spring Training 2013!

Right before I left for Florida, M received word that she had been admitted to Bryn Mawr College, and then received word the next day that Smith College wanted her to attend their school as well. Both schools offered her tremendous scholarships and we were all bouncing around in celebration.  Before I tell you more, let me explain about the interest in these schools. M took AP European history in her sophomore year.  She took the national exam at the end of the year and received a 5, which is the highest grade.  The testing organization then sells all the students names and grade reports and that’s how she got on Bryn Mawr and Smith’s lists.  So they started recruiting her about that time.  I really didn’t know anything about all this. (If I did, I had forgotten. It’s true what they say about chemo brain, menopause and just getting older in general!)  Madeline has always been quietly driven and I just assumed she had been pursuing this on her own all along. And she was, after they contacted her.  Last spring break (2011) we took a trip to the East coast so that we could visit both schools and basically we dropped her off and kept busy until we heard from her.  She loved both schools. She put her head down and started studying and has performed well in high school. She has a good GPA and class ranking and has been involved in many extracurriculars. I am really proud of her.

Mostly, though, I am awed.  My diagnosis was in July 2007. Madeline was 13 and Charlie had just turned 11. These have without any doubt been the hardest years of our lives.  Living with uncertainty and stress, chaos and depression are so very hard.  Although I am an optimist by nature, it takes strength every day just to drag myself out of bed and choose to meet the day. Imagine being a child in a home like that?! My mother instinct is strong though and I have worked every day to give my children a good example of how you persevere and choose to survive these kind of days.  I think Richie and I have done a really good job. And I think that M has done her work as well. She could have given up, as we have all wanted to at times, but she chose to reach for her dream and oh, how she did reach!!!

Last Thursday and Friday, M and I went to Philadelphia and visited Bryn Mawr.  It is a college founded under Quaker ideals and although it is no longer affiliated with them today, it still strives to hold to those ideals. I was very happy with all I learned regarding financial aid and student life. The campus is beautiful, founded in 1885 and was the first college for women to offer full graduate studies. The buildings are an eclectic mix of old and modern. It operates in a consortium with Haverford College, Swarthmore, and the University of Pennsylvania, all co-ed.  I was impressed and M is sold! She will accept their offer and we will help to make her dream come true. We are having happy days in the Backus house!

My wonderful little boy is doing well too. I think he is blossoming into such an interesting young man right now. I also am looking forward to seeing him grow out from under the shadow of his ‘big sis.’  He is still very interested in his bike riding. He was a bit side tracked this past month. He went to Disney World via Atlanta for a trip with his high school band. They took a class at Emory University and then performed at a Disney sponsored show and then had about two days at the park.  When he got home, Richie had finished restoring a 70s era Honda scooter. He uses it to get to school, band practice, fun with friends, that is to say, everywhere and all the time! He is working on his class schedule for next year and applied to be a class aide in the special education room. He found out this morning that he was accepted into the program and is very excited!!!!! He is also going to take some wood working and shop classes in addition to the regular requirements in the next two years. It’s his turn to figure out what excites and inspires him. I am so proud of him and he is happy.  What more can a mother ask for?

Richie and I? We are holding steady. Most days we fall into the reality with ease. This is our reality, no escaping it. Most days we use humor and strength to go with the flow, with whatever cancer presents to us. But other days are hard, tempers flare and our energies flag a bit. So basically, we are doing like everyone else. There is great comfort in this, as I never wanted the cancer to have such strength that it guided everything. And it doesn't. We are okay. 

So the next month will be busy indeed. We had to have a new roof installed and this project has morphed into having the house repainted. We are also going to have some of the more strenuous yard work hired out. Tony is managing the whole project for us and it is exciting and such a relief to have all this done. 

My plan is working! I made it five years to get M to high school graduation. Two more years and C will be graduating. This wonderful house we’ve made into our home needed a complete rehab when we moved in almost 13 years ago and we are down to the final projects. I don’t want to leave. period. But if I have to go someday, Richie won’t be left with the kids at home needing him desperately. They will be on their way to growing up and the house won’t be falling down around him.  So I will continue to set reasonable goals and strive to meet them.

We enjoyed a quiet winter and are looking forward to more of the same this summer. We hope to get to Camp, I haven’t been since 2007 and I miss it. I want to visit there in peace.  

And finally, I had an oncology appointment and chemo yesterday. I am on round seven of topetecan and avastin. While I feel quite good (on the good days), the hard days are still hard.  And my CA125 says what? Well, I have been hovering in the high 100s with my CA125 and my CTscans are showing the disease is stable.  The shadowy areas in my lungs were getting fainter on the last scan and my pelvic disease remains pretty much the same.  So, the topotecan and avastin seem to be holding me steady. My CA125 yesterday went up to 225, not a big jump but the wrong direction. I usually get about 7-8 months from chemo before we see any changes, so it may be that I am hitting the same cycle.  But let’s pray for it to last a bit longer. I am working with one of the integrative med docs to see if I can use iscador, made from the mistletoe plant, used in Europe for a long time now. It is showing promise with chronic ovarian patients like myself. TJ, I will be sending you info as I get it, so watch out!!

I won’t ever stop searching but I have to keep living, too. And I really love how and with whom I live. Thank you all for the repeated prayers, love, good energy and gestures. The food is wonderful, the favors are unforgettable, the hugs and the love sustain me.

Much love to you all,
Maggie

2012 and Beyond?

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

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

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

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

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!!!!!

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!!

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

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?

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!!

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

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