I am sitting low in a wheel chair parked in the hallway of imaging waiting for Kathleen.
Fifty feet at the other end, I can just make out the shitty little OR waiting room that Elaine and I sat in last April, when Kathleen was getting the tumor cut out of her. The OR waiting room is still temporary, and its design almost fosters a sense of anxiety. You are crammed in face to face with other family members closer than a packed Tokyo subway. It was night time then and the lights were dim in the hallway where I am now. It was the end of chapter one of this shitty bubble Kathleen and I got trapped in. As I sit comfortably and somewhat invisibly in Kath’s wheel chair, waiting for her ultrasound to complete, my mind wanders between eavesdropping on the hospital dynamics, and what I would tell myself at the end of the hallway last April knowing where things would go today. Would I do anything differently ?
I never imagined the almost daily imaging that has been happening– among other things. Multiple MRIs, full body CTs, xray after xray and now another ultrasound to make sure there is no blood clot in her legs. And the drugs… Lots and lots of drugs. Drugs to deal with the cancer. Drugs to deal with the cancer drugs. Drugs to deal with the side effects of the drugs of all the previous drugs. Here is just the evening assortment.
Her legs are swollen like elephant trunks right now with water. Its the body’s way of dealing with excess fluid (third spacing). We didnt understand at first why all the excess hydration. The Pain and Symptom nurse told us it was to try and bring the twitching under control, which was not a simple side effect of the hydromorphone, but a toxic reaction. Hence, the extra fluids to flush it out. They were confident the extreme water retention was not due to the cancer and organs shutting down as happens when one is near death, but just the drug side effects
Today we met with the main chemo doc. He still thinks its worthwhile to try at least 2 months of FOLFIRI. If he is keen, so is Kath, so am I. If by some crazy chance, it can freeze the cancer where it is, that would be great. We can make a go of it here. But the odds are not that good. Still, considering the hospital is paying for the drugs (about $40k), we take this as a good sign they have some hope it might work.
On the pain front, they are going to try another MRI tomorrow. They had to abort yesterday as the pain was too intense for Kathleen to hold still for 5min, let along 45 min. It was a bit better today on the pain front however. Perhaps discitis?
Last night I was talking to an old gal in the lounge of the cancer ward. She told me she had lost her husband of 45yrs to cancer. Took almost 3yrs. I told her where we were and asked if she had any advice for me. “Hang in there”. Not sure what the hell I expected. Magic words ? Secret ancient Mennonite advice? Hang in there.
In all this, Kathleen, Elaine, Jan and Lisa organized a birthday cake for me at the hospital from my favorite bakery, Nougat. ‘Hang in there’ ? There is no where else I would want to be.