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