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.