hello from madubois63 - update

[madubois63]

Hi everyone - I am sorry I haven't been in touch for a while. I did not send out Christmas cards for 2008. If you got one, it was truly a miracle - feel lucky, lol. If you saw/have seen me since then, wow! Life has been CRAZY to no end. Here is an update since I came back from my Texas trip last Christmas time.

On the last day of my amazing trip, I noticed my eyes were yellow. I called the cancer center and was told to go straight to the ER when I got back to NY. I went home, unpacked, then went to the hospital. I'm always trying to avoid the hospital but I went. I had severe graft vs host disease of my liver (a rejection of the transplant). I began treating it with phylabotamy (taking blood out weekly) and high dose sterroids. This started working but then a small amount of bc was found in the lung again. Started treating the bc with Herceptin and Fasalodex. This was also working but then my hips started to hurt and I scheduled hip replacement. Cancelled the early June scheduled surgery because I had pneumonia, and I also needed to be at my daughters graduation. I was sick but I made it to her prom and graduation - a huge milestone for both of us. Then I went back to Stony Brook and had my left lung drained. 2 weeks later, I was back in Stony Brook draining the lung again. Felt better and went on, but the hip really hurt and I tried acupuncture (friend from high school - offered her accupuncture/friendship services free). Things were good, then things were slowly getting worse. I used the cain and then started using the walker in the house. Then came the wheelchair in and out of the house. Walking became very dificult. My dad and son were taking me the bathroom and I fell out of the wheel chair. The next morning, Liz (best friend), my mom, kids and dad were all there to call the ambulance. My doctor was contacted and they brought me to Stony Brook kicking and screaming. I could not walk at all and the pain was agonizing. I had taken so much meds I didn't know which way was up. I was under a mix of morphine, dilautin and a few other pain medications. I do believe I was seeing things at one point. Now, in between all this, I had to get my kids ready to move out for school and get tuitions paid too. Shannon moved. Dan stepped up and was great. He drove his sister to the U of New Haven and got her settled in her dorm. During the week, Shannon stepped up and did shopping for both of them. She had a busy first few days with all the school programs and my sister filling in for the family luncheon. She had fun. I think everyone is supporting everyone else in a new way. We are growing up. Dan left the following week and my mom/yia yia helped him (he hates shopping) finish up. I was having anxiety attacks, but got over them real quick. Back to the hospital...They put me on antibiotics for a while and that helped clear some things up. I went home, and then I nearly killed myself again. Too much pain and too much pain medication...I went back to the hospital again for 79 days. During that time I got a morphine pain pump implanted in my tummy area, a new port, they worked on my lungs and nearly had me dead and they found a very small brain tumor from the breast cancer. They zapped the tumor that was found very early and was very small and it is gone. I am being monitored very carefully. I also have breast cancer that spread to the lungs (once again). I get Herceptin and fasalodex every three weeks for that. I also had:
MRI: (they knocked me out cause of the pain, then cut off my pink bracelet and used my left arm for blood pressure while I was a sleep. When I woke up I could see the indentation marks of the blood pressure cuff. I was mortified and angry to no end. I called the head docs and made then give me a test to rule out lymphadema and also to do something so that won't happen again. I now use a pen or marker and write on my arm not to use it under any circumstance.
CAT scan: for hips
dopler tests: to rule out clots/lymphadema in left arm
electrocardiogram: heart tests to make sure I was not going to have a heart attack
x-rays: to see fluid levels in lung
draining left lung: they took 1500 cc's - that's like a bottle and a half of pepsi at the pizzeria
physical therapy: to strengthen my legs and walk again (stood up and took 2 steps for 30 seconds each time)
blood work: to find source of infection
remove the port: that ended up being ridden with infection
bi-pap machine: to help my lungs get carbon monoxide out (they wanted to intubate me and asked for a dnr - they are such idiots. I refused!!! I'm fine. They scared my family for no reason.
respitory therapy: oxygen, massage and breathing exercise.
So now I am home and bed bound. My hip pain is under control, but I can't walk. I took very high does of steroids and that killed my hip bones. They are now pretty much gone. I am doing physical therapy to gain strength in my muscles and treating my lungs. Once the lungs are strong enough I will be able to get the double hip replacement. Sounds like fun? I now have wonderful, wonderful aides that take care of me during the day and night. My day aide works 12 hours and she is amazing. I wish I could clone her. So that is where I am at. If you get a Christmas card this year, It will be a surprise to me. I am inundated with paperwork for medical care and always calling someone about something.

I hope that all of you have had a better year than me. I know a few that haven't and I am praying for you. I love you all and wish I could be there for you and do more for you. Marry Christmas, Happy Hanukkah, Happy Kwanza and Happy New Year. My love and prayers go out to you all...Maryann