latest update on Madubois63 for those that are worried - thanks

[madubois63]

Hi all - It's time for an update. We took some big hits this past year, but think it it time to celebrate life and get together and EAT and laugh until our sides hurt. Some of us have had set backs and some of us are doing great. Time to stare...And I really miss Stephanie more that anyone can know!!!

Update on me: Last June/July my liver rejected my bone marrow transplant and I turned green with glowing yellow eyes. I had to have a horse serum treatment over two weeks in the hospital. And fortunately it worked (really my only option). My son graduated high school. I checked out of the hospital (all green), went to the graduation then checked right back in. No one was stopping me and they knew it!!! Things got better and I had a great some doing things I haven't done before. I walks in a field of sunflowers and walked across one of the Hudson Bridge with Steph. Went to Montauk and Eastern villages I haven't visited in ages with Liz and Carole. Come Fall, Theo (my BC onc) finds 2 new malignant lesions on my lung again. My lung is also filled up with fluid again, so the thoracic surgeon goes in drains over 4 liters of fluid (2 more weeks in the hospital), seals me up again with talc and sends me home. That was early December. I got a great surprise, The Her2support.org site that I have been pretty active with invited me to go to San Diego, CA (Never went to Cali) on an all expense paid trip for the Scientific Cancer Research Conference. I Planned my trip for 10 days and had 2 days before and two days afterward of just me time. The conference was amazing!! I got to meet people from on line that I've been in contact with for years. I also got to meet Joe and Christine. They helped my Maryann when her tumor spread to the brain. I hooked them up to talk and I know it helped. During the HUGE conference I got to me the doctors that found/isolated the HER2 gene and the Doc that invented Herceptin! It was a huge moment for me and not only did I cry, but the doc did too - he kissed us and thanked us.They are making a Hollywood moving about the making of Herceptin. I'll keep you informed when I hear more..Anyway the last day of the trip, I realized my eyes were yellow again. I called my leukemia on and they said come straight home and go to emergency. It was a weekend and I refused. I knew if I went back in the hospital I would get sicker. I had an appointment with my bc onc that Monday so they looked at me and ordered tests, Then I went to the other onc and got more tests (liver biopsies). I had too much iron in my liver from having over 70 blood transfusions for the bone marrow transplant. So now instead of getting blood, I have to give several units (less than a pint) a week and get a shot in order to circulate the blood and help stimulate my own cells to do the right thing. So far everything is working very well. I have to take VERY high amounts of steroids. I look like a chipmunk, but I am always burning calories so I lost about 12 pounds. I eat a lot, but have to watch everything with iron in it an also all carbs. The steroids have made me temporarily diabetic again. My numbers are huge and I probably should have had to gone to the hospital but I've been able to control it somewhat. These are minor things, because the steroids also give me huge amounts of energy (and a small beard). We replaced the carpets in my, my daughter's room and the hallway. We painted Shann's room, my room and the bathroom. I am so happy and the results. I also scrubbed the living room and am now making my way to the kitchen. They are weaning me off the steroids slowly. I hope I get everything done before I feel like my lazy old self again. Oh, and the pool is clean!!!! It hasn't been opened in 3 years because of me being sick....I am going swimming................................Oh, one other thing, the steroids have completely atrophied my muscles. I have take several fall and am using a brace and a cane. I had x-rays of the knee taken the other day - no break, but a bad twist. Liz and I started phsyical therapy and I have to get ready now. Love to you all. Have annivaersay, Happy birthday, and my deapest wished to everyone going through so much life...I love you all




Love and kisses - Maryann