Tuesday, June 14, 2016

The Good with the Bad

I am an optimistic, and I generally think of myself as a positive person, so I am going to start with the good in this whole process.

The Good
- It continues to look like the treatment is working. My bone marrow was about 75% cancerous when I started treatment last month. It will be Oct/Nov before I have another bone marrow biopsy but based on my daily blood work the results are encouraging. My neutrophils are literally 4x what they were when I started treatment a month ago. I am not into normal territory but I am at levels I have rarely seen over the last 4 years (which means bring on the sushi!).

- I get to see my parents much more frequently than I would otherwise. I am in town for about 10 days every month for 6 months and then I will be back for follow-up every 6 months forever (which I will make sure and plan not to coincide with holidays when we'd plan to be back anyway) meaning more quality time with my parents than I would have otherwise.

- I have gotten to see good friends that live in the DC area that I don't get to see near enough. Thank you to those of you that have braved the NIH security process to bust me out for a little while, or bring me take out and hang with me here (more than once)!! Thanks too to those of you that have offered that I have had to take a rain check on because I was not feeling up to it.  I have four more rounds :)... so hopefully we will connect soon.

- If you have to be inpatient for awhile NIH is a good place to be. Don't get me wrong it is a hospital, and my room screams that. The small extras like the patient library, and a masseuse on staff (yes, I am treated to a 30 min massage each visit), and letting us wear our own clothes, and leave the hospital on pass some days make it easier....and I have to add my doctor. He just got back from vacation and came in (it is close to 5pm) post an international flight to check on his patients. He clearly cares intensely about both this trial and his patients on it.

The Bad
- I have to be gone from Chad and the girls for 10 days a month. It has felt very long to be both times so far and will be two months in total at of six.

- Taking any kind of toxic drug has side effects that you would rather be without and this one is no exception. I am thankful this time that so far my vision has not been affected despite the swelling around my eyes. The ortho-static blood pressure has put me on "high watch" here but hopefully will correct once I return home to normal fluid levels, sleeping patterns and activities.

- There are no guarantees that I will have a longer remission, and there are real risks that I have become increasingly aware of.

- I feel like I am going to float away drinking 9L of water a day. The line of water bottles early in the day is daunting.

- Last but not least having a roommate. Luckily I have not had a roommate for most of this cycle. I see why people I connected with online complained about them. Sometimes you want to feel miserable on your own, and if you are not drugged up staying asleep while your roommates nurse is in the room is not likely (and they have never been the same nurses on the same schedules).

Today, I am feeling much better than I did at this stage last cycle. I went out to lunch with my parents, and before that checked out the weekly NIH Farmer's Market. About this time Thursday I should be home so the countdown is on!

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