Cancer Trek Continues

In my 20s I occasionally went on solo backpacking trips. My most enthusiastic trip was from Coos Bay, Oregon to Eureka, California. I walked and camped down the Oregon coast and discovered that if you walk south in bright sun the first part of each day you turn brown on one side only. I don’t recall any fear on that trip. But on other trips into the White Mountains of New Hampshire and the Cherokee National Forest area of North Carolina I put myself into places where an unlucky accident could have serious consequences. One effect of being aware of this was to be damn careful where I put my feet, most especially avoiding places where snakes tended to hang out, keeping good balance when one step off trail was straight down 100 feet, etc. Another effect was to be exquisitely careful with navigation, having good maps, decent compasses, maintaining safe margins of water and taking good care of my feet. Oddly enough, apart from arranging to be noisy as I walked I was mostly oblivious in those days to the possibility of meeting bears and I don’t recall stringing my food and other smellables up and away from the tent, etc. Luck was on my side for that hazard!

But now I find myself on another trek involving the chance of a solitary consequence. I just finished a course of radiation treatment on the heals of chemotherapy treatment number two (hormone/chemo #1 ongoing). Currently the only proxy for my prostate cancer activity is the measure of an antigen in the blood called PSA. But my stage four cancer was diagnosed with a PSA of only 7.6, drastically lower than the specialists expected, meaning that the majority of my cancer activity does not involve cells having PSA on their surface. This is very bad, as although my PSA is now so close to zero that I’m declared “in remission” and “cancer free”, the truth is that my loved ones and I can only hope that the therapies annihilated the undetectable cancer cells along with the detectable ones. In theory this did happen, as the docetaxal chemo is highly toxic to the cancer througout the body and the radiation was directed at the sites were the (PSMA diagnostic) “visible” cancer resided.

The implication is that it may be difficult to impossible to detect recurrence of my cancer (and I have been told quite clearly that it will come back because it had metastasized already before diagnosis). If I’m lucky the cells correlated with a return of higher PSA levels will come back in concert with the undetectable ones, they will be found in the same places, etc, giving me a decent chance of getting treatment early before tumors begin to have serious side effects. However I don’t know yet if the situation is as bad as this: I’m hoping my next oncologist appointment will reveal an alternative proxy. But it’s been 17 months and surely I’d have been told by now. Except I hadn’t been told the basic situation with respect to undetectable cells by an oncologist: I had to get enlightenment from the science literature. It turns out that only about 1% of prostate cancers involve this “sneaky factor” and because of that there has been very little research done on dealing with this type. It’s on me to stimulate my current oncologist to become proactive about this or else help me find one who is willing, as “waiting and watching PSA” seems to be asking for too much of lady luck.

And apart from finding an alternate proxy or means of early detection of my sneaky cancer I also need to find out all I can about strategies for discouraging new growth. Now that the radiation is finished I expect my heart to bounce back (fewer/shorter PVC runs) and that will enable me to resume aerobics, etc. This is all while I eagerly watch the human trials of AOH1996, a potential silver bullet that might come on line in time for me.

Algernon effect every three weeks for 18

I’m on a second, parallel chemo these days, getting it every three weeks for a total of 18 weeks. I got my third infusion a few days ago. But I have to take large doses of dexamethasone the day before, day of and day after the infusion. This strong steroid is a strong brain stimulant, for me at least. It lifted me out of the amazing cognitive funk I’d fallen into toward the end of the previous three week cycle. But it was more extreme than that. I realized it had brought back part of the mind I spent the last many decades with when I was chronically hypomanic. When doing math in my head took almost zero conscious thought or visualization of numbers. When I could get stuff very fast and carry on a multi-threaded conversation with a few different people simultaneously with a chat system. That part of my mind was handed over to a mood stabilizer that I take for the sake of my family and others who may be a bit tired of my frequent antics when I’m going very fast. But the dexamethasone gives me a few days of full mind power. If this effect continues in relation to the growing fatigue and cognitive fog that is also coming every three weeks the contrast is going to get pretty sharp. Overall it is a treasured 72-96 hours, as I really have gotten some stuff done.

Right Thoracotomy Epicardial Ablation

 

Epicardial ablation is the technical term for the surgical procedure I had done at UNC Medical Center on September 19th. (A thoracotomy is just “cutting into the pleural space of the chest”) This was done by Dr Andy Kiser, a professor of surgery at the University and a pioneer of this technique for treating atrial fibrillation. It’s going to take a good while to properly account for everything that happened to me in conjunction with this procedure, but three weeks on I’m in normal sinus rhythm 90% of the time and the trend is definitely in the direction of further improvement. (This sinus rhythm is at least partly due to the antiarrythmic drug Tikosyn currently) Contrasting this state with the “24/7” afib I dealt with before the procedure is difficult, but is best shared by saying I was flabbergasted to realize that the feelings of well being that flooded over me in the minutes after I went into normal rhythm are called “normal” in other people. I’d forgotten what normal felt like, but I like it, and I’m in still in a state of pure celebration of living. The doubts about the future that have dogged me since I approached the age at which my grandfather died of heart ailments (57) has vanished, hopefully for at least thirty years!

The paper linked to below has a detailed description of the procedure written by doctors Kiser and Mounsey  and an associate. This paper describes an initial approach to “convergent” treatment combining epicardial and endocardial ablation in a single session: a more recent refinement that applies to me involves a six to eight week gap between the epicardial and endocardial parts that enables the endocardial phase to be more effective. My endocardial procedure is scheduled for November 12th and there’s every reason to believe this will be a piece of cake compared to the surgical procedure. I confess to being very, VERY glad that I avoided reading these and other details before I had the surgery. Doctor Kiser’s 100+ epicardial procedure experience in combination with Doctor Mounsey’s 1300+ endocardial procedure experience allowed me to be confident and comfortable with going ahead with it, albeit mostly in an “ignorance is bliss” state in September. I think my subconscious was smart enough to know that foreknowledge of what was going to happen and what might happen would have only had a down side. Finally, “something” did happen to me such that, like the patient described in this paper, I required a dopamine infusion. I only jealized this was significant earlier today (i.e. I recall mention of dopamine being discontinued sometime after the surgery, but didn’t appreciate what use of that drug implied). I don’t know yet if I needed this for hypotension/bradycardia or for something else or as some kind of prophylactic.

If you’re considering having this procedure done my advice is to stop here, but otherwise, here are the details. WARNING: not for the squeamish.

http://www.eplabdigest.com/articles/Collaborative-Convergent-Epicardial-and-Endocardial-Atrial-Fibrillation-Ablation

OK, if you gotten this far you aren’t too squeamish, but here’s a bigger challenge.

SAMSUNG CAMERA PICTURES

This is a “central line”, the rightmost few inches of which sit inside the heart, allowing injection of drugs with fastest possible effect. This is the central line that was inside me for four days. By great good fortune, despite multiple nurses and doctors trying to explain the geometric reality of this gadget while I was in the hospital, I didn’t “get it” until a nurse pulled it out of me and I could see it as it is here. Pulling it out didn’t hurt. How on earth did they prevent internal bleeding with nothing more than the very firm pressure the nurse held on my chest for a few minutes? I don’t know, and I don’t want to know!

Five Days in Heaven

Sunday, September 29th, at 4:10am a drug called tikosyn converted my heart from atrial fibrillation to normal sinus rhythm after I was admitted to UNC Medical Center with low blood pressure and way too fast pulse rate. I’d had 24/7 afib for a long time, and a heavy afib “burden” (ratio of afib time/normal rhythm time) before that had kept me dragged down for years. So the switch back to normal rhythm was the very definition of pleasant surprise.

The five days in normal rhythm this week were blissful.  I’d forgotten how totally wonderful it feels to be in normal health. I walked, rode my bicycle, and did the other things allowed by the doctor as my wounds heal from a right thoracotomy epicardial ablation procedure my surgeon performed on September 19th.

But now I’m back in the “oh oh” state, and if I’m loaded with digoxin and more carvedilol I’ll be in the precurser state I was in almost exactly a week ago when I suddenly had to prop myself against a wall while I determined just how dizzy I was going to get. Ugh.

I have no choice but to “hang in there.” I’ll upload the detailed EKG data being captured by a Medtronic  “loop recorder” implanted near my left collar bone, send an email to one of the specialists, and be caller number 1 when the electrophysiologist’s office opens at 8:30. And this time, unlike last Friday morning, I won’t eat any breakfast. So if they want to do a cardioversion I won’t have to lay on a gurney for eight hours while my stomach empties.

But I’m almost entirely the same guy that went to bed with sinus rhythm, and my new found enthusiasm for life is still clear in my memory. Hopefully I’ll still be back to work on two embedded computer projects soon as I “stay stable” until I’m ready for the final step of my afib cure, an endocardial ablation procedure.