Breathing Room

Update: Medical News, Pictures, Next Steps

Sorry for taking so long to post another update. As my energy level has been declining, I have undertaken a bunch of new tasks and found new diversions, including a playstation and a trip to California. Simultaneously, I have been assigned to a series of new projects at work, so if I have neglected my correspondence with any of you, I plead distraction and weakness.

First, the medical news. I had my twelfth dose of chemotherapy during the last week in May (first week of June). That makes six months of systematic medical poisoning, and I’ve had about enough of that. Towards the end of the treatment, my body was getting very weak and my mental strength was flagging. I mentioned in previous posts my anticipatory nausea, and analogized it to having to avoid thinking about your toe, knowing that the pain will increase if you think about it, after it has been smashed with a baseball bat.

What I meant is that the chemotherapy makes the patient sick to his/her stomach - usually it gets bad starting about 24 hours after the injections. Nausea is a neurochemical reaction to stimuli in the digestive tract. Anti-nausea medications are actually anti-seizure medications that work on the brain, not the digestive system. In other words, your brain is what allows you/forces you to vomit. Your mind alone can make you sick, if it is confronted with the right stimuli - think of someone getting sick at a crime scene or battlefield. As the patient is getting injected (it takes about 6 hours in my case), if he/she thinks about how they are feeling sick, or about how they will eventually feel sick, they spontaneously get sick. So imagine sitting in a room full of people getting injected, all of them being sickened, getting injected with toxic chemicals that burn your veins - and imagine sitting through it without thinking about getting sick, knowing that if you do, you’ll have to come back again (and again) and the sickness will only get worse. The problem is that if your mind is making you sick and you actually throw up, every time you feel sick after that, the memory of having given in and thrown up will come back, and, in fact, make you feel sicker subsequently. For this reason, I avoided vomiting entirely for the last six months.

I consider myself a pretty disciplined thinker, and pretty experienced with the urge to vomit (thank you, underage drinking), but after ten or so treatments, the nausea just about outstripped my self-control. Every time, I had  pre-vomiting spasms that I was just barely able to control. Each time, the spasms were precipitated by visual stimulus - the nurse placing the drugs on the table next to me, the sight of a syringe of “the red devil,” etc. My doctors gave me steroids again, and a bunch of pretty strong anti-nausea medications - nothing worked. Eventually the only solution was for me to take such strong anti-anxiety medications that I fell asleep and snored/drooled through the injections.

The last treatment was the most difficult, both because of the progressively worsening nausea issue and because I was scared. Everyone kept telling me, “it’s almost over, this is your last one, you can hang on that long” and other “victory is just around the corner” propaganda. Nice thoughts, and I don’t fault any of you for having said this, or for having otherwise put your feet in your mouths - I’m too verbally clumsy to hold grudges about that sort of stuff. Anyway, I heard “it’s almost over,” and thought “yeah, it’s almost over… for everyone else.” If it was “almost over,” then I could just throw up all over the nurse and be done with it, but it’s not. If I did that, and the cancer comes back - or fails to go away - I will face more chemo, having given in and thrown up, making it that much worse. Just thinking about chemotherapy makes me feel sick, and even in the best case, I will get scans every three months for the next five years, and annual scans every year after that. In other words, I’ll have to live at least a few days of every year looking over my shoulder for the Cancer Reaper. Other people might worry about me, they might even hold my hand while I get treated, but I have to face those moments alone (as does everyone else), and being reassured that “it’s almost over” makes me cranky and resentful.

Besides, it wasn’t the last treatment that was scaring me exactly, it was the fact that I look inside myself and can’t find a reserve of strength left over to face another dozen chemo treatments, if it comes to that.

Speaking of “best case,” after the final chemo dose, I got my last PET/CT scan. It was good - even better than the “best case” I was told about when I was first diagnosed. When my oncologist first described my situation, he told me that the large tumor was large enough that it would probably never completely go away. Even if they killed it, it would probably just shrink and turn into a big lump of scar tissue. You might recall that my first set of scans showed the tumor was still visible but that it was metabolically “dead.” This was a good prognostic sign, bolstered by the latest results. They showed that the tumor had “melted” - the lymph nodes in the area are still abnormal - there is scar tissue and some “thickening.” The PET scan also shows no abnormal cell metabolism. If my treatment concludes, and the final scan is identical to this one, my disease will be in “complete remission.”

This raises the question: what happens next?

I hesitated to post anything because the bottom line is, we don’t know. More chemotherapy seems off the table (for now). The question is whether or not to do radiation treatments. The upside of doing radiation is that it cuts the risk of a recurrence from about 15-25% to single digits. On the other hand, it increases the risk of serious side-effects, most notably coronary artery disease and “solid tumors,” including lung and breast cancer. The solid tumors in question are very, very deadly. Lung cancer, is basically a death sentence and studies show that Hodgkin’ patients who smoke are more likely to get lung cancer after radiation. I don’t smoke now, but I did in college, so it’s not clear how much that matters. These risks are not negligible, and increase over time, so that the younger you are when you are treated for Hodgkin’s, the greater the risk that you will develop a secondary malignancy (because you will probably live long enough to do so). The risks are minimized by taking precautions, like carefully targeting the radiation and reducing the dose. There is no such thing as risk-free irradiation of the chest. One school of thought argues that since Hodgkin’s Disease is among the most treatable of cancers, and the solid tumors caused by radiation are almost universally fatal, “first, do no harm” means using the minimum necessary dose of chemo and radiation to obtain a remission of the initial disease. On the other hand, since a recurrence of Hodgkin’s can be very dangerous, oncologists who prioritize aggressive treatment of the initial diagnosis argue for using both radiation and chemotherapy. Doctors are reviewing my results and records now, and I’ll let you all know what I decide to do.