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