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 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,

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.