I’m about to be recuperated from the Houston trip this past week! Travelled Tuesday, hospital all day Wednesday, and travelled home on Thursday. My appointment went well with Dr. Hosing and my PA, Erin. My weight loss problem is due to Graft vs Host Disease (rejection). My donor just isn’t comfortable yet with me and wants to reject me, but they assure me that as time passes he will gradually settle in and decide he is where he is supposed to be and everything will be wonderful! That’s when I will get to get off the immuno suppressant drugs and live a more normal life! Meanwhile I am on higher dose of steroids to treat the GVHD, and have quit losing weight. I’m just not gaining yet….hanging in there at 88 lbs. Those magical steroids have raised my energy level somewhat which has helped. I will go back in a month for my regular checkup. Dr. Hosing cleared me to begin my third round of chemo so beginning tomorrow, I will make daily trips this week to Amarillo to get the Vidaza shots. Two shots in the belly a day for 5 days. I don’t know what to expect this time because the first round was brutal, the second round was not bad at all, just tiredness and fatigue.
Before I was supposed to be discharged the first time (before the BK virus hit me) I was assigned a survivorship nurse and had a lengthy appointment with her concerning what I can and can’t do once I get home. It is part of the Stem Cell Transplant Survivorship Program designed to insure safer living after transplant. Here are a few of the things I can and can not do:
I have to wear a medic alert bracelet for the rest of my life.
Children under 12 must wash hands and change clothes before coming by my house after school or daycare. Lots of germs in these places!
Anyone coming into our house must wash their hands.
I can’t be around children who have had recent vaccinations with live viruses like the nasally inhaled flu vaccine.
Lots of rules concerning pets.
Can not do yard work, dig in the dirt, or pot plants. (OH darn!)
Avoid church service during cold and flu season (Oct-April)
I no longer have any of my childhood vaccination immunity. They were all wiped out by the chemo that killed my immune system before the transplant. I will gradually start getting re-vaccinated. Crazy, huh?!
Everyone in the family that I will be around this winter has to have a flu shot.
Still can not eat fresh fruits and vegetables, unless they can be first washed with soap and then peeled.
The survivorship nurse schedules secondary appointments when I have my regular checkups with Dr. Hosing at MDA. All of the supportive stuff like follow up pulmonary function test, bone density tests, immunizations, endocrine testing, etc. Chemo can affect your whole body and they really do stay on top of it.
And of course, there is a big Survivorship Day every year to get together and celebrate. I’ll be there for that!!!
I have a couple of pics to post. My son-in-law Richie whom I dearly love and adore, showing off our bald heads! Richie, I am so thankful you are part of our family!
Here is a pic of my friend Monica. We were put together by my Doctor in Lubbock early this past Spring just after she had been diagnosed with myelofibrosis. We on the same journey, our paths are a little different, and I am somewhat ahead of her. But it is an awesome friendship and support system for us both. Thank you Dr. Owen for getting us together! It has been a blessing, and I know we will be life long friends!