Sunday, September 27, 2009

Mr. Pre-Existing Condition

“Laws are like sausages. It is better not to see them being made.”

-- (routinely attributed to) Otto von Bismarck

This familiar formulation almost certainly did not really originate with the Iron Chancellor; which has no bearing on its acuity. It should come as no surprise that I have been closely following the ongoing health care reform-related action in Washington. I have probably spent more time watching Congressional committee hearings on C-SPAN (or reading about them later) in the past couple of months than in the entire preceding period of my life. It has not been a particularly uplifting experience, although likely somewhat less distasteful than watching the sausage-making process would have been.

For personal reasons (and indeed frankly selfish ones), the subject of “pre-existing conditions” has been of particular interest to me. In many respects I am now a poster child for the problem. For the foreseeable future, and possibly up to the moment of my demise, I will require quite a few expensive medical services. Even if my cancer can be chased into apparently complete remission, I will have to be constantly tested and retested for signs that it has become reactivated; and in the event that happens, I would have to begin the costly therapeutic dance once again. No private medical insurance concern will want to have anything to do with me, unless forced to do so.

And forcing them to do so seems to be a feature of every piece of legislation now under consideration, as near as I can make out. That’s good news for me; but perhaps less so for the rest of you. Assuming that pre-existing conditions would also not be permitted to affect an individual’s premiums (wouldn’t they?), then premiums in general would have to be higher than they otherwise would be, to cover the higher costs incurred. The chronically healthy would be obliged to subsidize the chronically ill. If that comports with your notions of social justice in the matter of who should pay for my insatiable consumption of health care services, then thank you very much.

But before taking up your pen to sign those checks, it would perhaps be wise to become better acquainted with the number of digits to the left of the decimal point.

From the very beginning of my illness up to now, almost everything that has been done to/for me has been covered by my insurance plan. That’s because the hospital, the labs, and all the doctors have been “in-network” with respect to that plan. So, aside from the co-pays and the few non-covered items that I have chosen to purchase, the insurance company has paid for everything related to my treatment. In an upcoming post, I will take a look at some of the numbers involved, so that it becomes clearer what that means, in a case such as mine.

Monday, September 21, 2009

Full Time Employment vs. Long-Term Disability

Currently I am on short-term disability, which runs out on September 23. When that happens, I must either go back to being a full-time JDA employee, or I must go to long-term disability. There are a lot of confusing consequences associated with both choices.

JDA defines a full-time employee as being someone who works a minimum of 30 hours per week. I ran an experiment last week to see if I can do this. I did hit the 30-hour mark for the week, but it wasn't exactly a breeze for me. It's not clear to me that I could do this consistently, going forward. And if I do choose this road, I would not be eligible for STD/LTD again until the end of June 2010. In the event that any medical issue forced me out of action again before then, I would be forced into leave without pay, once I exhausted any accumulated vacation and sick leave time. An important related fact is that, assuming that the current chemotherapy is prepping me for stem cell transplant, that would probably happen before the end of 2009, and would probably involve a certain amount of downtime, in the hospital and/or at home.

On the other hand, if I elect LTD at this point, and then at some point switch to full time, then I would again be eligible for STD/LTD for six months, starting from the date on which I switched to full time; and my window of leave-without-pay vulnerability would extend from the end of that six months until the end of June 2010.

In either case, at the end of June 2010 the STD/LTD eligibility clock will completely reset, and I will be back to where I was before my illness began, in that respect if in no other.

No, it doesn't make sense to me either, but I asked as many questions as I could think of to reveal the fatal flaw in my understanding, and this is apparently how the system actually works.

Anyway, this morning Huong faxed my LTD application paperwork to the insurance company. On LTD I lose my JDA benefits, including health insurance, which I will keep alive via COBRA. This will cost us about $650/month, for coverage for the two of us. This is for the "reimbursement for in-network providers only" flavor that we currently have; if I elected the "reimbursement for any and all providers" flavor, that would run $900+. If these numbers sound high, then hold that thought; in an upcoming post, I will review some of the claims that have been paid on my behalf up to now by the insurance company. Spoiler: I now qualify, for the first time in my life, as being "high-maintenance".

Tuesday, September 15, 2009

Average Life (Read: Death) Expectancy

Yesterday I began the third chemotherapy cycle. I took the Revlimid capsule and the 10 dexamethasone 4 mg tablets. Due to the big steroid hit, I had the usual trouble getting to sleep last night.

Ah, see what I mean about having trouble finding things of interest to blog about? I seem to have settled into a routine that somehow seems almost normal. I do have to make an important strategic decision about whether to return to work full-time now, or to go on long term disability for a time before going back to work, but I'm not yet quite ready to talk about that. So instead of the hard, crispy technical details of most of the previous posts, I guess I'll have to go all foggy and philosophical on all yall for now.

Now that Huong's nursing burden is gradually diminishing, as I do more and more things for myself that she would have had to do for me not so long ago, she has had more time to read up on multiple myeloma. And so recently she asked about this factoid:

Average life expectancy for multiple myeloma patients, from initial diagnosis: 3 -5 years.

Her question: Do I think about dying?

My answer: No I do not. Well, hardly ever. Since I do not currently have a will or a living will or an advance directive, all of which I probably should have, I do feel more urgency than previously about creating them in the relatively short term. But I don't spend much time terrorizing myself with visions of the Grim Reaper suddenly appearing to collect me. Doing that would not advance the primary mission here, which is to get better, to get back to being as normal as possible as quickly as possible. Dwelling on fantasies of the circumstances of my death, what people would say about me at my funeral, and the final disposition of my body, would be a misallocation of psychic energy, a commodity that I must husband and expend as carefully as possible. So I try to avoid indulging in them.

Besides, that 3-5 years figure is a gross arithmetic mean that obscures some important facts about the underlying data.

A large majority of newly-diagnosed multiple myeloma patients are over-65 seniors. It's largely an old folks' disease, and the older the patient, the more challenging is the battle for survival, and the more likely that the battle won't last very long. There are plenty of patients that survive a decade or longer, meaning that there are also plenty that succumb within the first year, in order to arrive at that relatively low average. And the younger the patient, the more likely that patient is to push out to the higher end of the curve. Not that I'm a spring chicken myself, but the chances are good that a patient my age will beat the average, possibly by a substantial margin.

Multiple myeloma is difficult to detect, even if you are testing for it; and of course, since it is a rare form of cancer relative to the much more popular forms, such as lung or breast cancer, no one is routinely tested for it. So it is usually discovered, as in my case, when it has presented itself by causing some sort of obvious damage, usually to the skeleton. At that point, the chances of survival are substantialy dependent on how far it has spread. In many cases, because the cancerous blood plasma cells can pretty much travel anywhere the circulatory and lymphatic systems can take them, the cancer will have spread widely, making it all the more difficult to stop and roll back. In my case, it was apparently caught at a fairly early stage, and does not appear to have spread much beyond the spine and skull. So again this fact increases my chances of beating the average.

So, on the whole, at this point I like my chances of being here five years from now, and maybe a long time after that. I do not yet feel death's cold breath on the back of my neck.

Friday, September 11, 2009

Rounding Second, Heading For Third

Never have I seen the oncologist -- ordinarily a somewhat dour character -- so cheerful and animated; his exclamations upon how good I look, compared with the last time he saw me, he repeated several times in the course of our brief interview this morning. Since the results of the second chemotherapy cycle, as revealed by the battery of blood tests performed on Wednesday, appear to comport with his expectations, he authorized the beginning of the third cycle next Monday.

Once again he brushed aside an attempt to engage him on the subject of stem cell transplant; he simply doesn't think we should be focusing on that at this stage.

He responded to questions about flu vaccines by recommending that I get the seasonal vaccine now, and the H1N1 vaccine once it becomes available. Because of my compromised immune system, I am in one of the priority groups that is supposed to be at the head of the line for this.

He tentatively agrees with the neurosurgeon's analysis of the recent thoracic bone scan -- that my rib pain can be ascribed to the activity of the cancer -- but he wants to take another look at the situation once the third chemotherapy cycle has been completed.

Monday, September 7, 2009

On The Road Again

Today I drove a motor vehicle for the first time in more than three months. Huong drove me to a nearby elementary school parking lot, got out, and made her way to a place of safety. But actually I had no trouble at all, aside from a slight loss of fine pedal control at the beginning. That problem seemed to be resolving itself with practice, and eventually she decided that she was reasonably safe as my passenger, and assumed the shotgun position that I have been stuck in for all these months. I drove her to a grocery store in a nearby strip shopping center, and then home. Not very far, to be sure; but it appears to me that my major problem as a driver is likely to be back and leg discomfort on longer journeys, rather than anything to do with actually controlling the vehicle.

Saturday, September 5, 2009

Miscellaneous Stuff

As pleased as I am to be seeming to reach some sort of plateau of stability, it doesn't make the job of dreaming up topics for this blog any easier. There is nothing particularly compelling about the story of a guy who mostly spends his days swallowing pills, doing exercises, and tapping away on his computers. Sure, there is still the occasional trip to visit a doctor's office or lab; but they are becoming more rare. Let's see, I could tie up a couple of loose ends...

Did I mention that I have been off the supplemental oxygen for almost two weeks now? Yesterday the physical therapist measured my blood oxygen both before and after walking exercise, and got readings of 98% both times. So that's pretty much the end of that story.

And alert readers may wonder how the story of the rash turned out. I believe that the
hypothesis blaming Levaquin (pneumonia antibiotic) for this was proved correct, since that is the only medication that was stopped at the time that was not later resumed, and the rash has never reappeared since.

The second chemotherapy cycle ends next week. I take the last of the Revlimid on Sunday, and the final dose of dexamethasone on Monday. Wednesday I go for some tests to measure the effects, which will be discussed with the oncologist on Friday. Unless something has changed since the end of the first cycle, I am assuming that he will order me to go ahead and start the third cycle. Yawn...

Tuesday, September 1, 2009

The (Brief) Return of the Neurosurgeon

The neurosurgeon points at the part of the bone scan image showing the ribs. It shows bright spots in exactly the areas that are giving me problems, strongly contrasting with the very much duller appearance of the bones and connective tissues elsewhere. This is what "increased uptake" of the radioactive tracer looks like, and it indicates that there is something other than just bone there. The neurosurgeon announces that he believes that this is the cancer itself at work.

This is the first time (aside from the cardiologist's failed hypothesis of effects on the heart) I have heard it suggested that the cancer is active anywhere other than the spine. If true, it also lets the neurosurgeon off the hook, because it means that,
in the longer term, the problem is being solved by the chemotherapy, which attacks the cancer whereever it exists.

In the shorter term, the neurosurgeon offers a boost in the strength of the Oxycontin prescription (but I already know that the oncologist does not want to do this); switching from Oxycontin to Lyrica (which the oncologist has already also offered, but I have so far resisted doing this, because Lyrica is notoriously difficult to get used to); or a back brace. I will take the back brace under advisement.

The neurosurgeon will forward all the images, along with his commentary, to the oncologist. It will be interesting to see whether the oncologist concurs with the neurosurgeon's interpretation, or generates one of his own. I have an appointment with the oncologist at the end of next week, to discuss the results of the second chemotherapy cycle.

As an aside, while discussing the appearance of the T8 vertebra in the X-rays, the neurosurgeon corrected a misunderstanding on my part concerning the results of the balloon kyphoplasty procedure he performed on T8. This procedure did not fully restore T8 to its original dimensions, as I thought; in fact it got T8 perhaps 20-30% of the way there, at most. The purpose of the procedure was not restoration, but stabilization. The images show that it succeeded in achieving that goal, at least.