Dear Friends and Family-
This is difficult for me to write, so bear with me. I had my 8-week follow-up visit with Dr. Leal yesterday. The news was not good. It appears that the cancer has started growing again. Yes, after all that treatment this spring. I have not been feeling my usual self this past two months, which I attributed to continued side-effects of the chemo. While some of that may have been true, ultimately the cancer is responsible for the majority of my symptoms and general sense of low-energy and less-than-well-being. The major tumor in my upper chest is again pressing on major veins and arteries, as well as whatever nerve is making me start to go hoarse again. One of the lobes of my right lung is now blocked off and the rest are partially occluded, explaining my shortness of breath.
Dr. Leal mentioned a third chemo drug that we could try, although it has a very low response rate but with all the usual side-effects. I am not too keen on going this route again anytime soon, given how I have been feeling this summer. My gut tells me that it would be trading any chance of feeling OK for the next few months and beyond, for a 10% chance that it would succeed and buy me a little more time. It would also incur a much greater likelihood of illness and hospitalization than before, because I am that much more worn down after all I’ve been through than I was even 6 months ago.
She said she would ask the Radiation people if they think I am eligible for any more of that treatment, although my sense is that the probability of their agreeing is low. There was another, very aggressive chemo drug combo, but I turned out not to be eligible for that, so it’s out.
That led her to mention the “other” option: hospice. This is essentially where I forego any further treatment designed to fight back the cancer, like chemo and radiation, and opt to pursue palliative care only. This is designed to keep me comfortable, treat my symptoms as they arise, and make sure that I stay as much in control of my remaining time as possible. When cancer patients get sick enough from chemo, they can suffer from all kinds of infections and illnesses, and very often end up in and out of the hospital a lot. This also does not appeal to me. Hospice is designed to keep the patient at home for as long as medically possible.
Unfortunately, part of me hears “hospice” and thinks “giving up”. I have a strong will to live, and I am still very much in the mindset of “what do we do next?” It’s the hardest thing to try to change that mode of thinking. I so very much want there to be more good options to try. I can be stoic and put up with chemo and its effects, as long as there’s a decent chance for real benefit from doing it. That’s what we guys do – soldier on through! That’s what I’ve been doing for the last year-and-a-half. I’ve gotten fairly good at it. However, it’s a huge change, going from “Forward, March!” to “This Far and No Further”. Deciding not to look over the next hill is rough.
Now I must shift my thinking to management. Time management. Symptom management. Expectation management. I respect the philosophy and goals of the hospice movement a great deal. I agree with all of it in an abstract, intellectual way. But now that it’s MY neck on the line, it’s quite hard to embrace it personally, for myself. To be honest, I have spent the last couple of months feeling pretty poopy, and knowing that yet another round of chemo anytime soon would be a genuine hardship as opposed to simply an annoyance. There have been times when I’ve contemplated stopping treatment in favor of attempting to feel better. Moreover, there have been times that I have contemplated pursuing yet more treatment, and upon reaping a near-certain harvest of horrible side-effects and illness, well imagining myself to be better off… well, you get the point.
I can’t really find a nice, neat bow to tie this post up, so I’ll just end it here. Because of my hoarseness, it’s difficult to talk for any length of time, so I’d prefer emails to phone calls if possible.