Medical Marijuana and a new plan

 I was discharged from the hospital on New Year's Day 2026 as my fevering seemed to be under control and my blood tests showed some improvement on my kidney and liver enzymes. The main challenge for me now is the lack of appetite (and a seemingly smaller stomach), also my digestive system was not regular which also impacted appetite. I also have lost a lot of leg strength, probably due to spending two non-consecutive weeks in the hospital. I still feel cold (even when Yas feels warm or even hot), but I haven't had rigors (violent chills) and I've only had a few fevers (which Tylenol cures).

Last week (1/8) I went to bed early (9pm), but forgot to bring my phone with me. I sat up to use a urinal but my feet started slipping. The bed is about 3 feet above the floor and due to my weakness I wasn't able to stop this slow motion fall and ended up sitting on the floor with the bed a seemingly impossible distance away. For the next half hour I tried to get back up on the bed. I was able to get on my hands and knees and grab the railing with my right hand and lift my right knee so I could try to straighten that leg and get on the bed, but I didn't have the strength. After a while I pulled down a pillow and lay down comfortably on our carpeted floor, resting my legs. Now I really understand the phrase, "I've fallen and I can't get up". Yas came to bed and I explained what happened. She helped my up by grabbing my left hand and leaning back, while I grabbed to bed railing with my right hand, and I got to a stand so I could lie on the bed, Yas helped me get comfortable in the middle of the bed, and I used the urinals without having to sit up (I won't go into the technical details, but I can do it for one or two urinations and then need to use another urinal, and this happens every hour; I typically have 5 urinals on a rolling table that will last me 10 hours.

I also finally took my daughter Caitlin's suggestion and tried some medical marijuana (Camino) as a chewable designed to relieve nausea and increase appetite (the munchies...). It works very well and seems to enhance my mood a bit, but it also makes me sleepy. I still don't know the right dosage. It's effect seems to last about 3 hours, but then I might feel nauseous and need to take another one, but if I do this for every meal, I'm taking 6 edibles a day and sleeping most of the day.  So now I'm focusing on only taking it for lunch and maybe dinner. A bit of good news is that my digestive system is getting more regular. Twice a day I have a cup of hot laxative tea (one dose of Miralax, one dose of Benefiber), and two Senna on he side. This seems to be working well.

We talked to my oncologist, Dr. Caradonna, about the negative impact of Keytruda on my kidney and liver functions. He told us my kidney numbers are normal, but my liver enzymes are way too high and it looks like the Keytruda is stimulating my immune system to attack my liver.  I do have a lung  cancer met in my liver, but he didn't think that was cause of my liver numbers getting worse; so he put me on steroids (Prednisone, 80mg/day) for a few days. If my liver panel looks good by tomorrow then the plan will be to continue with a small dose of steroids and closely monitor my kidney/liver and other organs, as well as the sizes of the metastasized tumors.  If the tumors stop shrinking then I'll get another infusion, unless my liver numbers are not improving in which case we'll come up with another plan.

Being the only care-taker for a cancer patient (me) has been very challenging for my wife. She has been doing an amazing job, but it is a lot of work and emotionally challenging too. In many ways I think  cancer is harder on the care-taker then patient. She feels responsible for my nutrition, but there is nothing she can do about my loss of appetite or nausea except providing medication (including marijuana edibles), which may or may not work; and that is very frustrating (and scary) for her.

Over all I'm feeling better this week than last and I take my life one day at a time. I'm still hoping to beat this cancer, but it is not as easy as I thought it would be, even with all the tools of modern medicine at my disposal! As a learning experience though, it doesn't disappoint! Next Tuesday (1/20/26) I meet with my main Oncologist, Dr. Costa to talk about the new plan going forward. Two weeks after (2/9/26) I have a brain MRI and meet with my neuro-oncologists. I'm hoping the brain tumors are continuing to shrink or disappear. I'll write another blog post in a few weeks to provide updates!