I’ve been back home at my parents house for 1 week. Ugh what a week. I had my counts checked on Tuesday and for the first time in months I am considered within a ‘normal’ range on everything! On the other hand, I wish that were true for the way I felt. Weak, fatigued, anxious, irritable, and plain old tired. Tired because of extreme withdrawal from IV narcotics that kept me awake each night. Love (the benadryl the most) and hate ’em and for future reference I will remember the hate part the most.
Kudos to my husband, parents and sisters for being there each day to hang with me. The days were filled with lots of porch sitting, short walks, and trashy reality tv watching. Kind of a dream for most, but this girl’s mind is aching for something a little more stimulating.
Happily I woke today at 4:21 am! This was huge because it was the first night I have slept more than 2 hours at a time. No hot showers, no rubbing my own feet and hands till I cramped, no hugging the toilet, no TMZ.com for hours, no repeat late night Law and Order, no re-living the past 8 weeks. Just hard sleep (with a little help from ativan: one of the best nausea meds). GLORIOUS! I shall never take sleep for granted again.
Is the it (BMT) working?
To my better knowledge IT BETTER BE! In all seriousness, I won’t know until I have my next PET Scan before radiation in September. I was recently commenting on the feelings, thoughts, and emotions that race while lying in a recliner for 55 min in the dark for the glucose to travel around the body, and then lying completely still 18 min for the scan. I think I would love for a ticker tape of the 18 min. It would make for a good book.
What was the worst part?
Well in the crucial bottom-out time, my entire mouth and GI track first filled with sores then shed like a snake sheds its skin. This makes eating VERY strenuous, and coupled with nausea forget it. Still dealing with aftermath of this and I suspect I will for a long time! Root beer floats in the hospital (calories and protein), and now some organic frosted shredded wheat are the staple of my diet.
Overall, the worst part was last week hands down, but it too passed and it was nice to be home going through it.
Do you have to get all of your vaccines again?
Yes, one year from now I will start them. Until then no cleaning bathrooms, no sick folks, no animal feces, no contact with live vaccines, on and on… blah.
Radiation mid-September. My BMT Doc assures me that it is not as intense as transplant. Amount and duration all depends on the PET Scan. Until then, dealing with the lingering chemo stuff. Staying mentally sharp. Be a newlywed. Enjoying the warmth and the end of summer. Seeing friends. Staying active and stretching.