What to expect when you’re expecting…

September 2016, and I have (some) hair.

… to get better, but haven’t. Yet. 

It’s been four months since I had the Hematopoietic stem cell transplantation (HSCT) at Northwestern in Chicago, IL, under the care of Dr. Richard Burt. Although I had every intention of blogging about the experience, it just didn’t happen. For most of the over 2 weeks I was in-patient at the hospital, I was horrendously sick. The Cytoxan used to kill my old immune system left me so weak and nauseous, I was reduced to using a bedside commode. For days I had no appetite and sipped nutritional shakes for hydration and vitamins. At my worst, that was too much and I sipped iced water or ginger ale. I lost 15 pounds.

May 18th, 2016, my second “birthday”, the day my harvested stem cells were infused back into my system.

Perhaps worse than all of that nausea and puking was the C.diff infection I caught, which caused my stomach to bloat like a beach ball, gave me some of the worse sharp pains of my life and diarrhea. Lots and lots and lots of diarrhea. I wound up on the antibiotic Vancomycin for an entire month after I was discharged.

Even though I have a PowerPort, I had to get a PICC placed, too. At one point, I actually had 3 lines in, including in my jugular.

Along with the Vanco, I had to take at least 3 more drugs to prevent me from getting pnuemonia, UTIs, or fungal infections and alpha lipoic acid to help with nerve regeneration. There would be weekly blood draws every week for four weeks, then every other week for two months, and then once a week for the next three. 

There was a laundry list of things I couldn’t/shouldn’t do. Don’t be around people with colds or the flu, or babies and kids who had been recently immunized. No swimming in public pools, eating at buffets or adopting a new pet like a cat or dog. Thanks to the Cytoxan, my skin was extremely sensitive to the sun, so prolonged sun exposure was to be avoided.

Shortly after returning home, late May 2016.

Within a couple of weeks of returning home, my skin broke out with so many pimples, my face looked like the worse of 1998 Li- redux. I was perpetually hot, which meant running the AC all day (you don’t want to see our electric bills for this summer). My eyelashes fell out and my eyebrows were patchy thin. Combined with the bald head and there was no hair to catch the copious amount of sweat and oil that I grossly produce. I found myself washing my face and head 2-5x a day.

The weeks passed, and then months. I walked the halls of my apartment building using my rollator for support, eventually doing over a mile each time. Zoe rode her bike. My stamina slowly returned. I begun doing yoga and pilates which helped my increasingly sore back. 

But… there was no change in my balance. I had periods of “hypersensitivity”, with my fingers and toes feeling distractingly tingly and numb. I even startled easy- a horn blowing would cause me to jump. Worryingly, I kept feeling anxious. I might be excited or happy, but it registered as anxiety, with my palms sweating, head pounding and chest-tightening. I found myself praying and breathing deeply in attempts to calm my weirdly wired sensory nerves.

I checked with the team at Northwestern and was told that the odd sensations may be nerves regenerating. The “may” triggered a wave of fear. It “may” be regeneration, or it “may” very well be further degeneration. 

Zoe and I, August 2016.

In July, little blond sprouts of hair began to populate my scalp, and by August, enough dark brown strands had grown in that my hair was looking like less a victim of five rounds of chemo and more like … a hair style. It unfortunately was the hair style my brother Joe wore through most of the 1980’s. Still, it was nice to have some hair. My skin calmed down a whole lot, too.

Still, there was no real change in my mobility. In fact, I’m still weaker-without question- than I was before the transplant. I’m clumsier, too, and more dependent on the rollator.

On the real, I expected to be doing better than this. But I’m not. Brandon Sanderson writes in The Way of Kings:

“Expectations were like fine pottery. The harder you held them, the more likely they were to crack.”

Four months in and I’m throwing my cracked expectations at a wall and letting them shatter. I held them so tight the cracks were cutting me, wounding my drive to push forward. 

What to expect when you’re expecting to get better but haven’t? Expect the unexpected. 

And maybe that you kind of like having very short hair. 😉