We’re home!
But wow has this surgery (and its recovery) kicked my ass.
Nothing is easy.
I get winded walking to the bathroom. If I’m there to brush my teeth, I need to sit for a few minutes to generate enough energy to stand back up and begin.
When I shower, someone needs to be just outside the curtain holding my drains when I need both hands to, say, wash my hair.
The idea of drying my hair seems like a fantasy. As such, the combo of chemo curls that have started to make their way onto my scalp, mixed with the highly thinned hair that grew before it, has created a look the family affectionately calls “Einstein.”
The Vectibix is moving out of my system, but the last of its rash hangs on. Not so my Vectibix-fueled eyebrows and eyelashes which have “eye-loped” according to my sister.
Between my hairdo, eyebrows, drains, and post surgical weight loss, I definitely look like a cancer patient.
My appetite has regressed to age eight. I drink milk and eat cereal and Mac and cheese, maybe sometimes an apple. Also the Niemann’s chocolates we had every holiday growing up that I asked my dad to bring (dark chocolate, nuts and chewies only). Nuts are good protein. They all count for calories. Nobody else is allowed to eat them except Per, who has the hardest job in the house.
I lapse in and out of consciousness, managing about an hour of awake until I start to flag and want to put my head back down. Per makes me do laps of the house: one is plenty.
Today I had an appointment down at Northwestern to get my pump flushed and bring the team there up to speed on the surgery and mop up chemo, which will start in two weeks.
While I was in the waiting room, I felt a drop of liquid roll down my side. I unzipped my sweatshirt to find a t-shirt soaked by leaky drains. Besides being gross, we were freaked out, and it took several hours for MSK to get back to us to say it was normal, we should try to keep it dry, and change the dressings when we got home.
And THAT is how I ended up back in bed with a huge maxi-pad taped to my chest.
Later, Per carefully changed the dressings. It took him an hour, and he sweated the whole way through it. But he did a better job than yesterday’s home nurse, ensuring that he has one more task on his already lengthy caretaker list.
I feel guilty about all he has to do, and how little I can do to help. I’m mad at my body for failing me, for not bouncing back the way it had for the last two surgeries.
Per had asked the surgeon what to make of my wavering red blood cell count, moving up and then down, but never getting above low.
“This is her third major surgery; and she’s had a year of chemo. At some point, the body just doesn’t bounce back the way it used to. The bone marrow is tired and it doesn’t efficiently produce red blood cells any more.”
His answer was matter-of-fact, but it struck both me and Per—the first evidence that the whole “cumulative” thing people talk about is real, the first indication that we couldn’t count on my continued bouncing.
So we are trying to be patient. We are leaning on more people for more things. We are accepting this is going to go a little more slowly and making plans accordingly.
And I’m asking for more stars: for healing, for energy, for appetite and for patience. So much good has come of them so far—to the best of my knowledge, all my treatment worked, and there is no active cancer in my body. Now we just have to stay strong for the next few months of this journey.
