I am home and getting stronger. Christmas was a little depressing because I couldn't snuggle my grandchildren- we took dinner and presents over on Christmas Eve to hand in the front door- and saw the kids through the window. My funny little 4 year old grandson yelled, "grandma. can I see your head?" So I peeled off my hat and scarf and showed him my bald head. My daughter asked him, "Do you think Grandma looks weird?" He said, "No, I think she looks nice - it looks smooth"
To finish my story - after I wrote the first entry, I got very sick - had to go to ICU for a while. They did a biopsy of my rash and found I had "host versus graft"! Very strange since it was my own stem cells. But one way or the other, they put me on oxygen and pumped me full of antibiotics and 15 pounds of fluid! I looked like the pilsbury dough boy! I know it was that much fluid, because they weigh you for Malphalan and they weighed me every day or so while in ICU. Luckily all that fluid and the DEX puffiness came off by the time I went home.
The greatest blessing of the entire 5 1/2 weeks in Denver was that, my husband spent the first 3 1/2 weeks with me down there, then he came home and my sister came out from DC for the last 2 weeks. That completely changed the experience, because it was so wonderful to have them there. My appreciation for my hubby of 33 years has taken a huge upturn - and it wasn't bad to begin with. He was there at the beginning to give me strength and encouragement when I was afraid. My sister was there when I looked the absolute worst- all that fluid and a horrible rash all over my face and body and no hair. I looked terrible. I usually get a couple of hours to visit with my sister when she comes to town- but she was there with me for 2 weeks, so I enjoyed that.
The first week after I came home, I was exhausted and depressed. I took a nap 1 or 2 times every day. Then I went down to just once a day for the next week - but a good hour long nap. Then this week - which will be 3 weeks since I got home on Saturday, I have just taken a few 30 min naps. My nurse practitioner told me that it takes 6-8 weeks after you get home to stabilize your bone marrow. So, I am working a couple of hours from home and only going out when I go to doctor or to get blood work, or for a drive with my husband.
Also, when I left Denver, my WBC were at 2.8 and they dropped to 1.8 in the first week I was home- so I had to have Neupogen shots for 3 days. I guess that is common and i might need Neupogen shots again if they drop below average again.
I will have my "Light Chains" checked on Jan 2 - which is 45 days after transplant - and will find out how all this did on the cancer. I got panic/ fearful that this didn't "work" - because you can't look at your bone marrow - it is not like you can look down and see a wound healing, but I am trying to just relax and this scripture helps me:.
"Be anxious for nothing, but by prayer and supplication with thanksgiving, let your requests me made known.
