The surgeon’s nurse, Hansel, told me before the surgery that in 3, maybe 4 weeks, I would feel like a million bucks. Right now, I feel like only about 50 bucks. Enough to get by, but in no position to splurge on anything.
We survived tropical storm Ian blowing through, but we lost power at 9pm on Friday night and it came back on at 2pm Saturday. It was too bad we had to eat all the ice cream before it melted.
This morning my weight was 195.6, so I am down about 14 lbs since surgery day. It is a little hard to quickly gain back weight since without a gallbladder now, large doses of fatty food result in dramatic, liquidy output. I can’t eat very much since my stomach seems to hold only about a third of a meal at this point. I am trying to get down a Premier Protein shake with 30g of protein each day, but it tastes like coffee creamer and it’s hard to get down. And I can only get but so excited about astronaut food.
My pathology report came back on the 4cm x 3.3cm x 3.3 cm pie slice taken out of my liver. The tumor was about 20% killed by chemotherapy, which feels nice because I doubted sometimes that chemo was working at all. The report also mentioned the receipt of a perfect gallbladder with no gallstones. It’s nice to know that at least one of my organs is/was in good shape.
Yesterday I quit the tramadol painkillers cold turkey. I was taking 25mg every 6 hours, and feeling pretty fine until about 90 minutes before the next dose, when all my skin incisions buzzed with pain, and I had aches deep in the right side around my bottom rib. I had a weird feeling the painkillers were leaving me with more pain when they wore off, than really should be there. So I quit the tramadol and am just taking 325mg of Tylenol and benadryl.
The benadryl has helped with the itching from the surgical glue allergy. I first noticed this allergy when my port catheter was installed under the skin of my right chest. They used Durabond to seal it, and Durabond is really just a medical grade cyanoacrylate (super glue). That time, I ended up with a red, inflamed incision and tiny white blisters that took weeks to resolve. When I had my second abdominal surgery, I had 8 mostly small incisions and yet my belly was covered with Durabond like glaze on a donut. I broke out into huge areas of red, inflamed skin that blistered and oozed, and the surgery team promised to add Durabond to my chart as a definite allergy. I am pretty sure I have had more suffering from the allergy than from the incisions and their healing process.
I discovered after getting home from the hospital, that in areas where there were no incisions the Durabond was starting to peel and flake, and also realized that like superglue, Durabond also fluoresces under black light. So every day I chose a little area of bare skin and using ultraviolet light on a seek and destroy mission, I peeled off the surgical glue left there, being especially carefully not to go near any of the incisions. In a matter of a day or so, the redness and blistering of the nearby skin stopped and so did some of the suffering.
I have some pictures below as an example, if you’re weak at the knees or think this is NSFW, don’t expand the link below:
It’s been two days now with no tramadol, and I am getting more accustomed to living with a level 3 sort of pain at its peak, and able to move a little faster and suffer a bit less from it.
I’ve had a couple energy work sessions from our friend Scott, and I am very grateful for the calm, relaxing feeling they left me with, and each time I have found them hugely helpful with reducing background pain levels.
Also in the last two nights, I have gotten much better sleep as well, with solid 3- to 6-hour sleep sessions. When I returned from the hospital, I couldn’t sleep flat without stretching my incisions and making them hurt after about 2 hours of lying down. Jen bought a set of bolsters and wedges to support me in an inclined position, and I was able to sleep with those… but not well, it resulted in other parts of my back hurting which also woke me up. Some nights I was uncomfortable and sat awake for hours praying for sleep, which I would only get the next day in my recliner after hitting peak exhaustion.
Things are coming together now. Less discomfort, more sleep, higher energy level with more daily activity and three 200m walks per day. I have been listening to music, taking regular naps, and finally I’ve had some time to make progress on TV shows, which are sort of a low priority for me. Today I finished The Good Place after a year of working at it steadily. Yesterday I finished the first season of Picard. I’m a little hesitant to start anything new, since I still have to finish Obi-Wan and something else I’ve forgotten.
I’m trying to relax but I realize with a little bit of dread that now I only have tomorrow, Monday the 3rd of October, as my last unencumbered recovery day so I’d better enjoy it.
What comes next?
On Tuesday I am scheduled to be at the Cancer Center from 8:00am until about 7:00pm. I’m a little overwhelmed, sleeping is such a big part of my recovery days and I can’t imagine surviving 11 hours of walking around, waiting, and going through procedures all day. My fingers are crossed!
So at 8am I go to “IR Flouro Guided Needle Placement” where I expect my hepatic artery infusion pump will be accessed and assessed.
At 9am I have “nuclear medicine tumor localization SPECT (single-photon emission computerized tomography) with concurrent CT scan” which is like a PET scan where a radioactive tracer is injected and used to find tumor(s).
at 1030am I go to the lab and have my port accessed, and blood taken for lab testing.
At 2pm I visit my oncologist for a checkup and to determine if we will do some rounds of 5-Flouroracil (5FU).
At 3pm I visit my liver surgeon for surgery follow-up
at 5:30pm I go to the infusion clinic for a 5FU infuser that lasts 46 hours, and possibly for filling my HAI pump with liver chemo drugs.
All in all, a big day planned!
I’m not sure if I’m ready to go back into chemotherapy so soon. Since it always makes me heal wounds so slowly, I shudder to think about its effect on my recovery. Each day seems a bit better than the last, and I pray that continues.