Light at the end of the tunnel

Yesterday I started the "last" two rounds of chemotherapy, which will last 5-weeks, after which I will have a hiatus from medicine and doctors appointments.  After that I'll be tested periodically for return of cancer activity. The nausea will go away and the hair will grow back but I'll remain skinny and bald... a bullet head if I want to continue shaving.  I'm told that although no cancer showed up as active on the PET scan, this is not necessarily considered remission.  Rather it is called a "complete response".  The scans can detect the liver tumor like a cottage in the woods.  The lights are all turned off so the cancer cells may be dead or sleeping.  But the cottage is still there.  The margins are more highly defined as a result of the chemo.  I'm told surgery and radiation are not options but I'm still not sure why.  I'd like to burn that cottage to the ground!

The Non-Hodgkins Lymphoma is still a mystery.  It has not presented itself again since that original infected lymph node that was removed.  The chemo appears to be working with that one as well.

I'm getting shots of Neulasta.  This stuff increases the white blood cell production in my bone marrow to help fight off infections that may come as a result of high chemo doses.  Blood numbers all look good and in the normal range.

My other issue of concern has been weight.  I started all this weighing in at 210 which I hovered around for about a decade.  I'm 6 feet tall and I was thinking I would really rather weigh about 190 all that time but between surgery and chemotherapy, my weight has dropped down to 170 (which looks good on me) and I'm thinking that is an excellent target weight for me.  My feet don't hurt nearly as much. But during the last round it dipped to 165 and Dr. Scott and my nutritionist, Amy, are on my case to get it back up to 170.  With the extra week of chemo vacation I added an extra can to the nightly pump feed and concentrated on my daytime regular food intake, hungry or not and managed to weigh in at 169.5 for the beginning of chemo.

Speaking of hunger, I've been managing my appetite by revisiting Marinol, which is THC synthesized from marijuana in pill form.  At first I thought it was only making me groggy but Amy encouraged me to stay on for 3 weeks before I would really feel the clinical benefits.  She was right.  During the "break" it was the only drug I was taking and I was hungry at all the right times and sleepy at bedtime.  I functioned fairly well despite the occasional "high" side effect.  It seemed when I needed to function I could. But if I stopped to stare at something I could lose my train of thought and go into a zone.  I'd also asked Dr. Scott to sign my Michigan Medical Marijuana card authorization but he refused.  He said there is too much capacity for using straight marijuana in an illegal way, buying for friends, etc. and besides, the smoking aspect adds carcinogens to the body that no one needs.  He's sold on the prescription Marinol.  Really, I was more interested in exploring the medical marijuana phenomena than smoking it.  I'm fascinated by the new culture and the very strange rules for obtaining it and understanding the challenges of the "caregivers" who grow and process it. I wanted to right an article about the subject.  It's not hard to find a physician to sign the form for you for a fee but I think I will comply with doctor's orders for the time being.  Marijuana is cheaper than Marinol but with insurance copay, the opposite is true.

More concerning to me is stomach capacity.  I can maintain a weight of 170 with the addition of 4 cans of "Pivot 1.5" pumped into me each night but what happens when they pull that feeding tube?  I suppose that when I am off chemo, my weight will be less important and I can drop down to the minimum recommended weight for a 6-foot tall person; something like 140.  My tiny, tube-shaped stomach does not afford me a satisfying meal; at least not now.

My excellent take-away lesson from my recent 3 weeks off chemotherapy is that the new normal does indeed change when you get off chemo.  It took to the end of the three weeks before I really started feeling good and "not sick" and interested in eating.  It was enough of a positive observation to get me through the next 5 weeks of ingesting chemicals designed to kill my cells.  After one day, I already feel myself descending into that grumpier, shakier, lazier, weaker, sicker self but I can put 5 weeks on a calendar and get through it.  I'll be getting disability payments by that time so maybe I can budget in a little travel.  I'll certainly be looking to volunteer and find new learning activities so I can continue to grow as an active person with value to society.  That is the light at the end of the tunnel.