After Karen and I had our initial visit with my hematologist, and after we’d been to the clinic a few times, we began to understand the rhythm of the place. I’d check in; place one folder in the box outside the door for vitals; place another in the box outside the door for the lab work; sit; wait; get the vitals taken; get the lab work done; sit; wait for the room assignment for the visit with the doctor; sit; wait; have the visit with and exam by the doctor; review lab results; get an appointment for the next visit; before leaving, schedule the actual time and date. (After awhile we began to believe that we owned the parking lot because it seemed that within a comparatively short time we’d spent most of our life savings there.)

Soon, we adapted to the periodic visits to the UCSF hem/onc clinic. Slowly, we began to know the personnel, if not by name, at least by sight. The physical surroundings there, though somber and a wee bit on the dark side (don’t mean to conjure up Darth Vader), became familiar. In fairness, however, I should say that the view from the clinic is to die for. OK, I shouldn’t use that phrase. The view provides a sweeping panorama of a good chunk of San Francisco because the UCSF campus is on an elevated patch of ground, and the hem/onc clinic is on the 5^th floor. (The contrast between the clinic and the view is almost a metaphor for what was happening–the darkness of the physical environment surrounded by the beauty of life.) After a number of visits we reached a point at which we’d see newbies arrive who seemingly were unaware of the drill and I’d act as their guide: “No this one goes in this box and that one goes in that box, then take a seat and wait for your name to be called.”

Why, I was practically becoming the new sheriff in town, not that I have a take charge personality, of course.

Naturally each of us has a different journey with our MPNs, but I suspect that what all of us share is that we live in two different worlds at the same time: the medical one and the home one. No doubt we have different issues, approaches and responses to each of those worlds, but in one way or another we all have to find a way to adapt to and cope with, living in both.

How we deal and cope with the “medical one” depends, in part, on how proficient our doctor is in treating MPNs and how sick we are. If we’re coasting along, that’s one thing. If we’re obliged to undergo numerous tests, procedures, examinations, clinical trials, medications, bone marrow biopsies, surgeries, transfusions, injections, transplants, and more, we face more difficult challenges. The “home” world life depends on the extent to which our disease affects our quality of life and how we adapt to it and, if we are living with someone else, how ready, willing and able that person is to adapt to our changed circumstances.

Speaking for me, what’s happened in the “medical” world is that if my “numbers” maintain themselves at a relatively decent level for a reasonable period of time, I’d get complacent. After absorbing the initial shock of my prognosis of three to five years to live, (not that the impact of such advice ever completely dissipates even, as in my case, twelve years later), I’d get a tad cocky if I remained relatively stable and didn’t need any major medications or other aids, e.g., transfusions. (Though I had no transfusions until 2006, when I did need them, I did a bang up job of really needing them. But hold on—that’s for a later column.)

This casualness on my part in the wake of a series of “decent” visits to the clinic was similar to what I’d experienced some years earlier when I’d had three back surgeries—in 1988, 1990 and 1994—ending with a spinal fusion. In each instance the pain leading up to the surgeries was so intense that most of the time I couldn’t stand.  I spent a lot of time on the floor, either on all fours, or on my back with pillows under my legs. Often, in the middle of nights, the pain became so intense that I had to get up. After taking twenty minutes or so just to get out of bed, I’d walk in circles, crying, trying to “oil” myself.

Then, I’d have the surgery and after recovery and physical therapy, the pain would be gone—and though I’d be instructed to perform a series of specific exercises to ward off future problems, without the pain as a reminder, I’d drift away from doing the exercises. So, at least for me, when the pain would dissipate, so, too, did my impetus to maintain a regimen to avoid future problems (I know, I’m a dope.)

I think the reality is that for those of us lucky enough to be able to overcome pain, though intellectually we can remember having had it, we can’t physically experience it from memory, so some of us (count me in) stop doing what we should to prevent future episodes. Or, in the case of a series of “OK” visits for my MF, I’d get a tad cocky about my condition. This isn’t so bad. They make a big deal about it and overall I’m doing fairly well. They call it insidious, but I haven’t seen that. Well, in August 2002, that cockiness dissipated quickly—as you’ll find out in my next column.

Meanwhile, on the “home” front, at least for me, my life changed forever. I am blessed to be married to the love of my life and someone who was ready, willing and able to adapt her life to my changed circumstances. But inevitably there are times when the medical life intrudes on the home life and vice versa. For example, though I was feeling generally OK for the first few years post-diagnosis, I did have a relentless exhaustion that forced me to retire a good fifteen years before I’d intended to do so. That part of the “medical” world put a stress on my wife and me, forcing us into a 24/7 relationship far earlier than either of us had anticipated, and putting financial pressure on us which we’d never expected. On the flip side, e.g., when undergoing a bone marrow biopsy, my “home” life prevailed in that my wife always insisted on being in the room with me, daring the technician to force her to leave.

Her presence at those times helped me endure the procedure easier than otherwise would have been possible. So, there exists a dance between the medical and the home lives that we can’t avoid, a twisted pas de deux. In the end, for me, where the two intersected is that I had a home life I loved and was in no hurry to leave, so I was willing to fight harder in the medical world than otherwise would have been likely. Though I had relative calm with my disease in the first few years, allowing my wife and me a chance to adapt to our forever changed medical and home lives, my comparative lack of suffering significant medical complications was about to change—big time.