Still No Pump Chemo

I went to Sloan Kettering to see Dr. Kemeny on Wednesday. About halfway there we took and wrong turn and took a ride I don't regret along the Hudson River. It was beautiful.

My CT scan came back negative. That was great news. However my bloodwork again revealed the Alkaline Phosphotase enzyme was again too high - not as high as before but still to high - so I was not eligible for a liver pump chemo infusion. I asked Dr. Kemeny what could be done and she said she would be willing to add the steroid Decadron to the saline and Heparin that solution going into the pump in lieu of chemo. She said the steroid often reduces the enzyme counts and the only real side-effect to be concerned about is a lack of sleep. I told her that considering the liver pump is what's providing me the best odds of no recurrence, a little lack of sleep is hardly an issue. I'd tolerate far more than that in order to be eligible for the pump chemo. The pump chemo combined with the systemic chemo raises the odds of no recurrence from 60-70% to 80-90%. I'll do whatever it takes.

Dr. Kemeny also mentioned the CT scan revealed what appeared to be inflammation in my intestine and she asked if I was experiencing abdominal oain, swelling, diarrhea, etc. I told her I have experienced none of the issues she asked about and she said the appearance of inflammation could very well have been a result of the contrast I drank and also had injected intravenously for the CT. I hope so. Symptoms of Colitis was one of the concerns she had. And given the option, I'll pass on that.


Each time I have a trip to NY scheduled one of my regular passing thoughts is that I can go by myself. Then within a few minutes I start laughing at the absurdity of such a thought and I make a call or two to my friends who are already on board to join me for the trip when needed. I am currently way too fatigued from the chemo treatments to drive the four hours each way, should I do it in one day or two. And this leads into my overall need to care for myself. It's amazing how much resistance that occurs in my thinking. From an early age I was impacted by the culture of the USA - to be independent of the help of others. That may not be very apparent considering I've reached out for the support of my friends and community, but the reality is that it has taken me a great deal of personal growth to be able to ask so directly for support. I'd be willing to live in seriously undesirable circumstances, but I won't have it for my little boy. He will always have a good life as long as I'm around to have any say about it.

And amazingly, I was at the Tompkins County Department of Social Services a couple of weeks ago and I was told my disability income was too high to receive much in the way of anything from them. Perhaps I might receive a few dollars for food each month. To which I responded, "So is DSS support essentially for people who are so down and out that there going to be on the street if they don't get help?" The answer, "Essentially, yes." I guess it's good the poorest of the poor have an agency specifically aimed toward their specific needs.

So caring for myself has been very humbling. Asking for support for starters. And also just resting instead of keeping up on my to-do list or even being social. It's taken a lot of letting go of how I believe a man & father should live and instead do what I've got to do to be as healthy as possible. This whole process - surgery, recovery, chemotherapy - it's all feels very demasculinizing. I'm sure I touched on this the first time I was diagnosed. Yet the thought still shows up today. Granted the experience of demasculinization is a cultural creation. It's not real like gravity or mortality, but it can feel very real and had it gone undistinguished by me, it would have the controls regarding my daily decisions. But instead I keep an eye out for it, notice when it's invaded my thinking, and quickly presence myself to the reality that after caring for my boy, caring for myself emotionally and physically as I undergo chemotherapy is of the highest priority. And, succumbing to the desire to not feel emasculinized isn't always a bad thing. It's just not very useful in my case right now.

And gratitude is another powerful place to stand. My father-in-law sometimes reminds me of the huge privilege it is that we live in a country where the needed necessary medical treatments are available to us. It is indeed something to be grateful for.