Sunday, May 29, 2016


When you talk to people online there is a lot they disagree on, but everyone agrees being in treatment and drinking any alcohol does not mix. This is really not hard either because the big drugs you get in treatment kill your taste buds, and you feel so bad for so much of it you really usually don't want to eat, much less drink.

What is ironic with moxetumomab though, is you wake up every morning feeling like you have a hangover. I am almost 2 weeks out from when I had the drug and I am still waking up every morning with a headache and feeling very dehydrated. Now I know the dehydration is a watch-out throughout the treatment period (hence the militant rule against sweating), but I had not connected it to how I'd feel each morning when I sleep through the night. I had thought since the drug was out of your system fairly quickly post treatment, and I would have thought my blood vessels would have fixed the holes before the next round.

So I have had no alcohol to drink in several weeks, but wake up every morning feeling like a have a hangover. Thanks to Tylenol and a tall glass of water each morning those systems quickly abate. Otherwise I am feeling really good and looking forward to a pretty normal week this week.

I started back to work Thursday. I came home mid-afternoon and crawled in bed and took a nap, but it was nice to feel better and do "normal" things.

My blood work last Wednesday was about what I am use to. It was a mixed bag. The bright spot was my platelets that had doubled since I left the hospital. They are still not quite normal, but the huge surge has greatly improved the appearance of my arms, post so many IVs, PICC and needle sticks. I no longer look like a battered woman!!

My hemoglobin was low, but about the same as when I was discharged, which was not a surprise given how tired I have been. Hemoglobin carries oxygen to your organs, etc. Low hemoglobin = feeling tired.

My ANC (Absolute Neutrophil Count) and White Blood Cells were lower than the levels when I was discharged. This means my immune system stinks. If you are sick please stay away!! Hopefully this improves before the flight back to Bethesda a week from Tuesday.

The girls finished school on Friday. Chad got back from Geneva last night. We have a low key weekend planned, and I am going to be savoring every day over the next 10 days. Then June 7 I head back for round 2 and I will begin the countdown until I can come home again!!!

I will likely focus on enjoying my time home, feeling good, and will probably not post again until round 2. Hope everyone's summer is off to a great start!

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