It’s not what it seems

You might think that no posts means no news but actually it is a reflection of my exhaustion.

My brother completed his first round of chemo aimed at actually prolonging his life. When I spoke to the oncologist about two weeks ago she clarified that the first 6 weeks of radiation and chemo was just to shrink the massive tumor in his neck pressing on other vital structures such as his carotid artery.

“The plan” is to give him 6 cycles of chemo-each cycle is 3 medications over 3 weeks. It is expected to be pretty rough with a cumulative effect. It appears that chemo is a gauntlet where only the strongest (and luckiest) get to move on to the next round because there are lots of side effects and benchmarks that have to met.

My brother has basically failed after only one round. His second round has now been delayed two weeks in a row because his white cell count is low. White blood cells fight infection, the normal range is 4-10. That’s not a very wide range. Look around at all the humans in your vicinity-they all have WBC’s between 4-10. If you happen to have a family member with the flu their WBC’s might be elevated to 12? My brother’s WBC’s are 1.95. Technically that is neutropenia.

In the world of oncology that is not earth shattering, it is actually an expected side effect. The twist is that we-BF, Bro and I are planning to go to camping at the annual hippie fest in Vermont. Neutropenic patient with a trach, feeding tube, port catheter and pacemaker camping? What could possibly go wrong? Hmmmm…..cuts, bug bites, rashes, river water, generally questionable hygiene????

My brother is very opinionated and he didn’t hold back today when I questioned the test results that didn’t quite make sense to me. He kept saying his platelets (related to blood clotting) were low but saying it was his immune system…

Whatever it is that they measure before they give me chemo, there’s not enough of it for my immune system to function properly.  In fact, the nurse today said that if they went ahead with Day 1 today, the chemical they give me could reduce the effectiveness of my immune system to the point where I would have no immune system at all.

They decided that that is unsafe.

I reassured him that he doesn’t need to know everything about his treatment to which he shared this insight

An NP took about 15 minutes today and explained pacemaker values (the theory behind the numbers) to me and I was gobsmacked all to hell.  Usually I’m treated with all the consideration of a hog in a slaughterhouse by people who look at their workday and see only a long row of whiny meat puppets that seems to stretch on forever.  It’s not their fault, they just don’t have the time to get up close and personal.

From the mouths of patients to the ears of healthcare workers

 

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