My Turn II


John Wright

Well, here I am, less than two days until my first event of chemotherapy. I am both anxious to get it started and in great fear that it will not stop the lymphoma. I've been almost fatalistic about the unpardonable delays between my initial symptoms in May of this year and, finally, an action step to stop the lymphoma, chemotherapy, in NOVEMBER! I've been told that if I have to have a cancer, this is the one to have, because it can be cured. Okay ... So who gets cured? Is it the early 20's person or some old fart like me at the age of 73? The stats don't look quite so good for people of my age.

I think the overall lack of faith I have in our medical system or state of evolution of that system is due, to put it simply, that none of the people I've known that I cared about ... some 15 of them ... with various types of cancers ... across 30 years ... became a "survivor." Hmm ... in my book that is not a good sign. Understatement!

So it is that I'm spending more time contemplating my demise rather than planning a nice future. Now, come on ... can you blame me? I hope not ... but it really doesn't matter, does it? Oh, yes, I am talking (or typing) about both your opinion and the more important reality (sorry there, buster) that all of us perish ... and I've lived far longer than the 15 folks I referenced above.

Death sucks! The worst part, to my knowledge, or lack thereof, is that I will not be aware of a damn thing or in any way a conscious participant in the future of our universe. Yes, damn it, that sucks! For now, I am that I am (oh, don't get all pissy on me, religious ones). I exist ... and to quote another long dead old timer ... "I think, therefore I am (exist)." Okay ... and when I cease to think, what am I? And now I think you get it. Nothing is a poor place to be, which in itself makes no sense, as being nothing requires no space at all, does it?

Perhaps now more than ever before you can appreciate my angst with humans being so childish as to focus continuously on anything BUT immortality, and later being ready to let the chips fall where they may, once the big issue is successfully addressed! Talk about messed up priorities ... Oh, yes, let's screw around for another millenium or so before getting our act together! Above all, if you die, if you become nothing, all the opportunity you and your progeny might have is utterly wasted for literally no good reason.

Methinks I got somewhat off the track in this article. Not that I have stated anything wrong, but I indicated in the first My Turn article that I would address the weaknesses and failures of our medical systems in place at this time in the USA ... and pretty much also in the rest of the world. I know of no enlightened countries. I'm almost bored by the prospect of berating our idiots, because pointing out the now obvious, to me, is a waste of time. Though, as you will see, given the reality I have experienced you also have to fear for your life and feel more than a little bit misled.

Cancers, whose origins are only sometimes known, quietly invade our bodies from within by cell mutations. We have no awareness of the presence of a cancer until we either become symptomatic or have some sign of the cancer appear in some physical test intended for another purpose. The idea is that often, by the time we and our doctors become aware of our cancer problem, it has advanced to the point of becoming incurable. But sometimes we get lucky in the timing of a diagnosis, and sometimes the type of cancer can be treated successfully. It is a combination of genetics, exposures and the luck of the draw ... not to mention the state of technical progress in being able to treat, successfully, a given cancer.

Overall we have a horrible problem in that the incidences of cancer keep increasing, along with mutations of existing types of cancers. My own lymphoma might or may be merely one of sixty different variants of lymphoma, each of which carries with it a specific chance, or lack of chance, for successful treatment. My belief is that we are being lied to about heart disease remaining the number one cause of death in the USA. No, folks, it is cancers, and the lies are obviously designed to keep us from freaking out about environmental issues and questionable products that can lead to us getting cancers, not to mention the idiotic misguided policies of allowing high risk individuals to reproduce. Still, apart from the deceptions, the reality of the cancers exists ... and our best interests if we happen to get a cancer are met if we have something treatable, found while it still is treatable with some reasonable chance of success.

In my case I question the reasonableness of the amount of time between me becoming symptomatic and the actual discovery of the cancer, and beyond that the delays in initiating treatment. To point, I was told I have an aggressive form of cancer, which would lead me to think time is of the essence in treatment. But no ... It is already two months from the time of the first biopsy, which, due to the type of biopsy performed, provided no useful information whatever, so I lost a month there until a proper biopsy was done. Then, even with a diagnosis in place via the pathologist I still had to stand in line for over two weeks to even see an oncologist to get started with treatment. And now, here I am, some two weeks after that, finally about to receive chemotherapy.

I am most distraught with how early I presented myself to emergency rooms and urgent care centers with symptoms that should have rung alarm bells in the minds of the doctors. Instead, location policies decided that someone with my symptoms first needed to be seen by a primary care physician, who would be the one to decide what should be done with me. In short, going to an emergency room provided nothing useful because I wasn't dying then so they figured I had no reason to be there. Wrong! I couldn't walk due to extreme pain in one foot, and all the idiots did was an X-ray, finding nothing wrong, and then they stopped and sent me on my way with a walker and a prednisone prescription. So why didn't they do other imaging that could have shown lymph node irregularities? Similarly, when I presented at an urgent care center with leg edema I was sent away with nothing useful ... they did do an ultrasound of my upper leg to rule out a blood clot, but nothing else, so again I was told to go see a primary care physician (PCP). Hmm ... I didn't have one unless I drove 400 miles to my regular PCP, and I damned well was not going to pick one at random, or take the recommendation of the very people who were booting me out the door without proper diagnostics being done.

You might get the idea that I am unhappy with the present state of the practice of medicine. Right! Of course, many of the now stupid practices do not appear stupid from the perspective of the people running the hospitals, due to insurance considerations, especially where the federal government is involved, aka Medicare and Medicaid. The red tape is absurd, the laws are absurd, the non-medically productive costs of "health care management" and the results are pathetic in terms of timely, reasonably expensive and technically sensible patient care.

So, I am the unwitting fool who believed, based on past practices of my early years, that doctors would obviously do what the patient needs, not realizing what changed institution policies would dictate for my "care.". And no one really wants to come out and state to the public the reality of the changes that tie the hands of doctors who otherwise would (or at least could) call for timely and relevant diagnostic tests ... tests that just might save peoples lives. In short, the distortions based on fighting over financial considerations and the political red tape that provides nothing at all useful are disgusting. We wind up with the opposite of the original promoted ideas from programs like Medicare.

Thus, here I am, wondering if the delays will cost me my life? Maybe yes, maybe no, but why should my issues with the practice of medicine have become a problem at all? It is nonsensical. But the story does not end there, for I am my own advocate and I figure out how to beat the system if I can. Read on.

I need to share a few thoughts about the PCP issue. As a retiree I spend lots of time away from my domicile, the location of my PCP. Retirees, and for that matter anyone who travels a lot, need ready access to quality PCP's regardless of where they happen to be at any moment in time. This is, of course, the direct reason for my angst from receiving wholly unacceptable care at an emergency room and at an urgent care center. In short, the institutional policies that determine what these facilities will and will not entertain in diagnostic procedures works directly against the wellbeing of ill people who happen to be from "out of town."

Beyond that, I had in prior years visited available local physicians and to a person they were not worth the powder to blow them up. They were poor doctors. So, just how is a stranger in town supposed to identify the quality physicians? Oh, yes, they are the ones who are not accepting new patients due to already heavy patient load, which is yet another byproduct of institutional policies designed to maximize profit in a difficult insurance environment, both private and government. Thus, I received inferior care, which is what led me to using the emergency room and later the urgent care center when I noted that I had a significant medical issue. But they wouldn't listen and they would not do the necessary diagnostic work to determine the nature of my problem. This situation is unforgivable.

Early this year my PCP in my domicile decided to join a network of specialized physicians who would have limited numbers of patients, so as to provide quality time to each. The organization is MDVIP. The idea is the patient pays $1650 out of pocket per year for this highly personal concierge service, and the physician bills the insurance companies per usual. It is surely worth every penny to the patient for the vastly improved quality care. My PCP's start date was the first of September, at which time he could directly refer me to an MDVIP physician in virtually any city I happened to be in at the time I have a serious medical need. Under MDVIP I am guaranteed a same day or at the latest next day appointment. This is something I have needed for a long time and I signed on in the month of May. But, alas, my PCP's start date was the first of September, which meant any remote referral he would want to make should not start prior to September.

As it turned out, my PCP did get me in to see a local PCP at my location in the latter half of August. That was very good. The right stuff started to happen. But the timing could have been better, which in this case was no one's fault. I did get great medical attention from the referral doctor and also later from my regular PCP, but by this time the calendar was months beyond the onset of my symptoms. So here I am, kind of a victim of circumstance, but also a bell-weather to warn other people about the state of our healthcare environment.

Okay ... Now we'll see where we go from here. I surely will report my early and later experiences with chemotherapy in part III of these My Turn articles. I will also at the mid point and at the end of chemotherapy be able to report success or failure