Thursday, December 13, 2012
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.
Saturday, September 29, 2012
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
Tuesday, April 17, 2012
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
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
Wednesday, January 11, 2012
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
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
Saturday, December 10, 2011
Happy December
Hi Everyone!
The holiday season is upon us and I find that as much as I loved Christmas when the kids were little, I love it even more with them as young adults. They have a different appreciation for what the season means and their expectations are more in line with reality. We can still have magic without the mystery of Santa and their fantasies are more directed at time with family and friends than with what special gift is waiting under the tree. And they sleep later which is a real bonus!!
The cold weather is here, the wood burning stove is keeping us warm and I am busy knitting and sewing, two occupations that make me very happy. After the news of lung mets, we struggled through November. We were lucky enough to have had Mom, Mary and Kaki visiting in late October to get us past the first hump of depression. And then two of my dearest, oldest friends came to visit in November. Terry and Dede are two people that have always been in my life. I don't have any memories of life with out one or both of them in it! Our time together was more than wonderful and they both gave me far more than they realized with their visits and all the giggling and laughter that occurred while they were here. We ended the month with a visit to St Louis for a Murphy Thanksgiving. It’s our favorite holiday with the Murphys and never fails to lift my spirits.
M and C are busy finishing up the semester, final exams and projects coming due these next two weeks. Richie is hoping to take some time off of work during the Christmas break and I am working my way through the second round of topotecan and avastin.
So far, so good on the cancer front. My CA125 dropped last visit and that is a good indication that something is working in my favor. At this point, I feel so jaded that I am not too excited, don’t want to get too hopeful because I don’t want to be disappointed anymore. The side effects are relatively easy to handle. I have 24-36 hours of nausea after each topotecan infusion and as it affects my bone marrow, I feel the familiar exhaustion that comes with chemo. I have few responsibilities outside of the house so this is very manageable. I take my first treatment at the cancer club at KUMed and then days 8 and 15 are here in Lawrence. We have an incredible regional oncology center at the hospital here in Lawrence. My doctor is just amazing, a real fighter and a fantastic patient advocate. I love each member of the nursing and office staff. They are so sweet to me and are quickly becoming like a second family. If I have to do this, I am so glad to be there.
M is busy applying to college. She has applied to about 15 different schools, and received good news from all of them. Now we enter the financial aid phase and hope for the best. She has been awarded some scholarships so far, but will have more information after the financial aid paperwork is submitted. Charlie will be participating in the Kansas Cyclocross (bicycling) Championship this weekend and has been working hard training for these kinds of races. It’s awfully satisfying watching these two as they become passionate about their interests.
Madeline and I are working on starting a support group for teens who have a family member with cancer. We have great ideas and I hope we can find some other kids that will be willing to join the group. Madeline tells me that we just need to offer snacks and teenagers will show up. They are always hungry! My hope is to give my own children a safe place to share those fragile emotions. While I know they both have great and supportive friends, there is something about having a shared experience that makes these kinds of support groups so very important.
One final bit of news, I received the best Christmas present EVER yesterday! For those of you who know Mary and Kaki, you know they are the BEST Cardinal baseball fans and go to spring training every year. And this year, I am going also!! I have wanted to go and be with them for years now, but it has always been out of reach. This year, Richie and I decided that I just had to go and of course, Mary and Kaki and Mom were supportive of that. So my apologies to real baseball fans who think they should be going in my place, but I will cheer hard and have a great time with my sisters (except for my sister Chris - sob!) and mommy!!
There isn’t much more news to share. Thank God. No major sickness or setbacks. Richie and the kids are healthy and everyone seems to be managing the stress of cancer, and of life in general, pretty well. I sure do like these kind of updates!! I hope that the holiday season brings joy and love to all of you. Thank you again for helping us to get through another year. Next July, I will have made it through five years of cancer and I am so very thankful to have had all of you by my side during this adventure. Lots of hugs, love and kisses!!!!!
Maggie
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
Thursday, October 27, 2011
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
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
Tuesday, September 27, 2011
River Discovery, Part II
The days are getting shorter. Richie and I celebrated our 21st wedding anniversary Thursday. In the craziness of the last two weeks, we both forgot about it. I am glad we could both be okay about that because even though it is an important anniversary in our story with each other, it is just a day. What is important is what has happened in the meantime. And what is happening right now.
I left off my recounting of the River Discovery trip after day two. I am glad for the diary I kept because I quickly lost track of days and dates. Time was easy to estimate with the sun’s position, but keeping track of the days didn’t seem terribly important. So if anything seems out of place and time - it’s only in the recounting, not in what was actually happening.
Sun Sept 4
By Sunday morning, I had easily lost track of the day and the date. And what a feeling, the world had really fallen away. I had the best night's sleep and was ready for the day. This morning I started the day with Amy as a guide. She, her family and friends are the reason that River Discovery exists because of their own intimate story with cancer. Their lifelong love of the river and knowledge of the wilderness is what helped to carry me through this adventure. When you have confidence in those around you, you can’t help but be confident in yourself. (This is exactly how I feel about the doctors and nurses that have helped me in the cancer club!) The guides’ knowledge of the river, the local geography, geology and history of the Salmon River Valley was not only part of the program, but a special treat. Hearing someone’s love of their environment and place resonates with me. This helped to increase my sense of safety and my trust that on this trip down the river I was going to be okay. They hadn’t steered me poorly yet and by today I realized that was unlikely to happen. Being able to trust so openly and honestly in others is so freeing, such a gift to receive. I will be forever thankful.
We stopped early for an hour's hike up a small tributary. This was a beautiful walk and the prize was a small pool at the end of the trail. This was physically challenging for me as I have been so inactive in recent months. I had to work hard to complete the hike, but I was pulled by the beauty of the area and a feeling that I had to see it to the end. The trail started by a beautiful bridge which stirred my memories and gave me a sense of peace, as if I had been there before. I felt like I had seen this bridge, I had a connection.
I hiked with the others to the end of the trail and rested at the pool. I felt such a feeling of peace and completeness in that moment in time.
We stopped and made an early camp that day at a sandbar that had a rather high cliff we would be using to rappel from. I was clearly exhausted from the hike and Ellen got me tucked into a restful spot in the shade for a short nap. I felt like a little kid again in a way because I was just too excited to sleep. But I rested and relaxed while others sat in the water, played games and enjoyed a peaceful afternoon. It was nice to have a day to slow down.
At camp, Amy got busy rigging her ropes for the rappelling. We climbed to the top of the 60 foot cliff and after very thorough instructions we took turns rappelling down the wall.
I volunteered to go first. I knew that if I didn't jump right in, I would change my mind. As I stepped off the edge and followed Amy's instructions to go straight down (yes, straight down!!) the side I was just overwhelmed with a feeling of freedom. Even cancer couldn't touch me there. In that moment in time, I wasn’t a cancer patient or an out of shape 47 year old woman or a mother or two teenagers - I was just Maggie!! It was incredible, I was on cloud nine!! It was easily one of the most exciting things I have ever done. I was crying and laughing at the same time. Such joy!!
Ellen had rigged up a solar shower for us and it was such a reward to pour some warm water over my head and ‘bathe’ at the end of the afternoon! In the evening we gathered for dinner at the campfire, recounting our highs and lows for the day. I really enjoyed this ritual. As much time as we all spent together during the day, it was always interesting to hear others interpretations of the day, their lows and their triumphs. Sunday was easily the highlight of the trip for me. And I knew all my angels were near, the human ones and the spiritual ones!
I thought a lot that night, watching the stars, and thinking about growing up. I was always in a such a hurry to get through childhood. I wanted to do it all by myself. I wanted to do what I wanted, no one telling me yes or no, right or wrong. I wanted to play all day, my games, my way. In my rush to grow up, in the reality of life as it is now, I had shuffled those childhood dreams and wants to another place. And although, I haven’t let cancer take my optimism or sense of humor, I have let it take away my sense of FUN! The reality Richie, Madeline, Charlie and I face is not so innocent these days, but there’s still time for play. We need more lightness in our lives and to encourage each other to live in the moment. I found new strength and purpose in these moments, in these times. The excitement of the rapid followed by the peace of the eddies, a hike, a prayer at the river pool and the thrill of rappelling, each moment gave me comfort and confidence in life again. And in my ability to LIVE it!
Mon Sept 5
On Monday, we awoke, ate breakfast and struck camp. The morning reading gave me thoughts to chew on for the day. Another short day on the river, with a stop at hot springs along the way. Sometime in the 70s some people had brought in concrete and created a makeshift pool at the source. Everyone in the group trekked to the ‘hot tub’ and was able to jump in and feel the warmth for a bit. There were smiles all around especially from those of us who were missing the conveniences of the modern world. It was so comforting to feel that warm water after days of sand, dirt and cold water. A nice reminder that civilization was not so really far away.
We made camp early again this night at a beautiful sandbar on a bend in the river. There was more time for a warm wash and quiet before the evening began. We had plans for a combination luau and fiesta!! A celebration for the many miles we’d covered so far and our triumphs along the way. We had guacamole, chips and margaritas! I admit I overindulged but it was such fun, there was much laughter and a feeling of happiness in our little community. One of the participants had some experience with hula dancing and so our cross cultural evening on the Salmon was interesting to say the least. Imagine 15 women singing, dancing and laughing on a sandbar on a river in wilderness. The gods MUST be laughing. We had a lovely dinner, fish tacos, and ended the evening with another gathering to share our highs and lows. Really by this time, I couldn't come up with any lows. Nothing but good was happening for me. I was amazed at how each day I felt a deeper sense of compassion and love for all the members of this group.
My hopes for myself on this trip were that I would be able to break out of the comfort zone that I have created for myself these last four years. I like to think of it in terms of peace. I have been looking for the peace that has eluded me for these years. Mostly, I am trying to find peace with my disease, peace with what it is today. I still believe that I can find remission and a return to good health, but if that is not my path, then I have to find peace with the cancer as a chronic disease and to come to terms with this as a part of my death. In recognizing I have no control and that that is okay, I can see the peace. One gift the river was beginning to share was that living in the here and now was the most important thing I could give myself. This doesn't mean I can't prepare for a future, but I need to find the joy and love and gift of every day and revel in that. There will be moments of change and chaos (the rapids, the chemo treatments) and then the times of relative calm (the slipstream, holding Richie’s hand, taking a walk.) And I am okay with that.
Tues Sept 6
Striking the camp in the morning was an important ritual for me. Starting fresh every day. The habits established in these few short days showed me what strength I still had. Not just the physical, which was wonderful and felt so good, but in the emotional and intellectual strengths I had to offer. It felt so good to rely on myself again. The support I have received from all my family and friends notwithstanding, I have not had to do much for myself. Not to belittle the physical demand that cancer makes on my body (it’s a bit like getting beat up every month, as Richie puts it) but I don’t do much in the yard or around the house. Emotionally, I have taken a break too. I am not always able to give the hug or kiss the booboos. Not like I used to do. And so to keep up as I did was one of the many rewards of this trip. I felt strong for myself and others and it was such a wonderful strength to hold on to!
This day we stopped at an old homestead that seemed to me to be a garden of eden in the wilderness. The original owner was a real mountain man, a loner, who loved women and adventure and seemed only a little odd - all things considered. He built his fortress and lived his life in a remote wilderness. Relying on himself to manage through the days in that canyon. Sure, he may have been a bit kooky, but I was a little jealous of the surroundings and the peace that came with that isolation.
But I am a social creature and would have found that life lonely. The people that occupy the bar now are making their own way and it appeared to be pretty darn peaceful. And they sold Haagen Daas ice cream bars - what a treat on a hot summer day!!
After we left the fortress we had only a short float to camp. The day was very warm and the sun was high in the sky as we prepared to pull in to camp. In the last half mile or so, I jumped in the river following Amy and Sandy. In the first seconds in the water, I was so shocked by the cold, I imagined I could jump right back into the raft just from sheer shock!! I could not believe how cold the water was, but I settled in for the float and actually became used to temperature for that short period of time. The strength of the current made slowing down difficult, but the shallow depth kept me from floating too far away. I made a safe landing at the beach.
We unloaded the boats, set up camp, relaxed in the shade of an enormous ponderosa pine and prepared for our final night on the river. I certainly could feel a sense of melancholy settling in for me. In all these days and nights on the river I had experienced a full range of emotions. I hadn’t thought beyond my immediate circumstances or surroundings in days. Knowing that it was coming to an end was both relief and a disappointment. Always a city girl, I was looking forward to a long shower and washing my hair. I started to think about Richie, his smile. About Madeline and Charlie. I did miss them.
Wed Sept 7
Bittersweet day, the trip is ending. Our group got packed up early as we had to meet a plane. This last day we would only spend a short time on the river, but we had a couple of good rapids to meet and I could feel the electricity in the air. I traveled the last day with Larry. And I jumped in the back of the raft. It hadn’t taken me too long to figure out that the back of the boat was the spot for me. I didn’t get nearly as wet there as I had while riding on the front and I could stand up and hoot and holler, which I am rather good at!
I felt the river was a little sad that day. I was a little sad. I had experienced such a variety of emotions and physical challenges in the previous five days (and the past four years) and I had survived and thrived. I had met the challenges and felt stronger than I had in many, many months. I feel like I am prepared for the future, whatever that may be. And lucky me, I am moving forward with 23 new friends. Although lonely some days, I have never been alone. That’s a lesson, isn’t it? I have so much, I’ve recognized that these last few years, felt it - now I know it, with such certainty and trust.
Fast forward.....
Tues Sept 27
I have survived another round of doxil and finished two weeks of double antibiotics. I am still standing. I feel remarkably good given the chaos of the last two weeks. I feel a shift has happened in my life and while I believe I have been on the path towards this shift for a long time, the trip to Salmon and the adventure down the river has solidified that shift in me. It wasn’t just the experiences I had or the laughter I shared that moved me. It wasn’t just the rapids nor was it the slipstream we floated through. I have been searching for a way to accept the cancer into my life (which means accepting it as a part of my death) and to find my peace with it since the diagnosis four years ago. Every stage of this story, from the first emergency surgery, to recurrence, to constant chemo and related health issues has challenged me in every physical, emotional and intellectual way. And still I am here.
On the first day on the side of the river, after the paddle boat and crew dumped, we stopped to see if we could help the others. I was shivering cold, teeth chattering, and Kyle told me, ‘get off the wet clothes, into your dry things right now’ and I did. Right there on the side of the river I stripped out of the wet and in to the dry. It wasn’t until after that I thought about my naked body out there, my white fanny flashing in the air. I realized that I’d already given over my trust to this entire group. We were there to support one another, to carry each other to the end. As the river had provided many metaphors along the way, I decided that this was an important one for me. I shed the cancer story when I took off the cold, wet clothes. I pulled on my dry, lovely fleece, like a new skin, a new perspective. I allowed myself to feel scared, joyous, cold, warm, silly and brave. I took care of myself. I reawakened that little girl who so loved to do it herself and now has the maturity and wisdom to trust that in the end, it will all be okay. No matter what.
I have a favorite poem by e.e. cummings called ‘let it go.’ Brenda shared it with me in early days and I read it regularly to remind myself that in ‘letting go’ all that is left is love. And that, I have in abundance.
Love, love, love
Maggie
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
Subscribe to:
Posts (Atom)