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It’s been a slow, sleepy summer…

I’m eight weeks out from round two and happy to report, I am doing well. I won’t lie and say that it’s been all wine and roses the last few weeks. (Mmmm, wine and roses…) I have been *so* tired. The hammer came down during week two and my exhaustion really peaked at week four. It finally started leveling out about week six. I am able to work and function for the most part. My house is a mess. My garden and lawn is unkept. But, for the most part, I am plodding through it. If you give me 30 minutes of sitting still though, I will fall asleep.

Craving watermelon like crazy
Craving watermelon like crazy

Round two was harder on me and I’m not entirely sure why, but, I am going with the cumulative effect. My bloodwork looks great, so good, by looking at it you would never know that I underwent radiation at all. My doctors here in Minnesota are very happy with the way everything looks. They do tell me radiation is notorious for making you feel tired. I’ve had a few patients suggest that maybe I wait on round three, but, I am hesitant to do that. The way my disease went haywire last summer, now is not the time to sit back and see how everything works out. If my tumor proliferation rate stayed somewhat stable, it would be one thing, but the way it jumped in the last year – no way. Cancer and I have been playing a chess game for nine years now. It made a big move last year and now I am trying to regain ground.

I received my records from Switzerland and everything looks good. Round one really helped push back at a number of tumors. Round two presumably has – that remains to be seen when they scan me during round three. I’m pretty confident that my exhaustion is my body’s way of telling me it’s working hard to heal.

Amidst all my exhaustion, I am trying to appeal to my insurance to help pay for portion of my treatment. This has resulted, so far, in two denials. I am now requesting an external review of the first round and submitting claims for round two. Fingers crossed that they will come through with *something* other than “not covered under your policy.” It’s interesting, because my policy cleary states they cover trials, which technically, this treatment is in trial in the U.S. So…the rub is because I am going to *experts* in another country, they are refusing to pay. Go figure.

Wondering when my super powers will kick in
Wondering when my super powers will kick in

Aside from the fatigue, I’ve had almost no side effects, except that I am craving watermelon like crazy. I think I have eaten seven whole (big) melons this summer by myself. When I first got very sick nine years ago before my diagnosis, I craved strawberries and pickles. At that time I was super anemic and I’m sure my body desperately wanted the electrolytes. Maybe now my body is craving moisture and some micro-nutrients available in watermelon.

Again, I chose to pay via Transferwise (see part 8 for more deets) and started my transaction last week. It should be safely in the University of Basel’s bank account by tomorrow. Naturally,  because of the exchange rate, I messed up the amounts and will still owe the hospital 25 CHF.

My summer was slow and sleepy, but, at the end of the day, I feel relatively good and lead a pretty normal existence. I can’t complain. I am almost nine years out from my diagnosis and hoping to get at least another nine more.

Round three, coming up!

>>> Part Ten

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Dawn Marie
Dawn Marie
Patient and advocate for better diagnosis, treatment and quality of life for people living with neuroendocrine cancers.