Tuesday, April 17, 2018

Too good to be true?

My appointment at NIH last week went really well. The nurses and I were really excited about my labs. They were great. Some of my counts were better than they have been in years.

My doctor put a bit of a damper on our parade and reminded us I had been on steroids for so long that they were likely influencing my counts. I peaked at 18mg of dexamethasone and was at 16mg a day for awhile but am down to just 2mg a day now. I'll have been on steroids for about 3 months at my next appointment so I have won a round of testing of my adrenal gland to make sure that it is still working when we remove the synthetic drugs. Then at my June appointment I'll likely have another bone marrow biopsy to really see what is going on.

So far no big side effects have reoccurred. The last couple of days I have woken up looking like I have a sun burn, but if that is the only side effect I have I am a-okay to stick with this.

My girls are definitely much more aware of when I am feeling good, and when I am not. They are also old enough to understand that having cancer reoccur so much is not a great thing. Luckily most of the time the teen anxiety in our household revolves around learning to drive, tests, homework assignments and other very age appropriate topics! 

Last night at dinner I was drilled on my dating history starting with my first boyfriend and who dumped who and how Chad and I started dating (he is out of town this week). I love that the girls still like to sit at the dinner table and talk but at one point Margaret interceded on my behalf to tell Katt to give me a break I did not need to share everything :).

I don't go back to NIH until May 10th so hoping for a couple weeks of minimal side effects (and hopefully no more conversations on my dating history!!).

Monday, April 9, 2018

Family Immersion Therapy

This is the first year our girls have ever been in different schools but luckily they had the same Spring Break which was last week. Our family's vacation pace was perfect for me. We sleep in, have slow mornings, do an activity, have lunch, do something else early afternoon then come back and rest, or read, for awhile before dinner.

Since my family really forgets that I am sick it is also good to help me get moving and feel "normal". Plus we were with my parents whose pace is more in tune with my current pace. I feel like last week was family immersion therapy to jump start my body back to normalcy.

I am almost scared of jinxing myself by saying I have been feeling good, but I have. I am still working on stepping down the steroids but am down from a peak of 12 meds at 5 different times of day to just 5 medications at 3 different times of the day.

I head back to Bethesda tomorrow and my testing is Wednesday. I am curious to see what my labs say because I feel like my hemoglobin is up and the chemo drugs are doing their job and my body is starting to give in to them and has stopped fighting them.

I just wish the weather would realize it is April and Spring!! We got a few inches of snow overnight and it just feels way to late in the year for this. I'd love to be able to be outside walking more but hopefully we will hit that point soon.

Will let everyone know how my appointments this week go.