Thursday, December 31, 2009

Bum's Rush

Now that I am so much improved, it seems as though the IPOP clinic team can scarcely contain its enthusiasm for getting me out of town. After seeing today's very good counts, I was presented with the following plan: I will be given tomorrow (Friday) "off", meaning no going in to have blood drawn for tests, and then no waiting around to see if any IVs are required based on the results. Saturday will be a more normal day, with the usual testing procedures; but Sunday I will be off again. On Monday, I will lose my catheter; after that, I will have nothing scheduled until the formal check-out training on Thursday, after which I will be free to go home. I will be expected to return for a follow-up visit in sixty days.

One question that may have occurred to the reader has also occurred to yours truly: After all this tormented maneuvering, is the cancer gone now? That was the point of it all, wasn't it? And If the cancer isn't gone gone, then how much is left, how dangerous is it, and what must be done now to further treat it? Surprisingly, no one at Hopkins is prepared to address any of these questions at this point at time; they are being hand-waved off to the sixty-day follow-up. It will be interesting to see how the Christiana oncologist responds to these queries.

Tuesday, December 29, 2009

Back To Out-Patient

This afternoon I was discharged from the cancer center's in-patient unit. After more than 72 hours, I am finally untethered from the IV pumps. The only remaining symptom that I continue to struggle with is the occasional episode of nausea.

My blood cell counts are all back in the normal ranges, in some cases even higher than that. Partly this is due to the injections of growth factor (Neupogen) that I have been getting for several days; these have now been stopped, so we can expect that the counts will dip (but not crash, as before) over the next couple of days. The stem cells are supposed to pick up the slack and finally return the counts to normal, once and for all. Assuming that happens, and that I don't get sick again in the interim, the stem cell transplant team will declare final victory, and discharge me to go home, probably in another week or so. I would formally return to the jurisdiction of the good old Christiana oncologist, whose responsibility I would once again become.

Sunday, December 27, 2009

A Difficult Few Days

I am writing this from my bed in Room 14 of the 5B module of the Weinberg Building. I have been here since I was admitted as an inpatient at 8 P.M. Christmas (Friday) night. It was decided to convert me to an inpatient for several reasons. First, I was running a fever of 101 F degrees. I was continuing to battle waves of nausea; acute mucositis that made swallowing anything, even liquids, very painful; and diarrhea that I could not control (I was involuntarily soiling my clothing and bed linens).

Since then, I have been continuously tethered to an IV poll with two Omni-Flow machines running concurrently, with up to eight bags being fed into my catheter at once. I have long since lost track of the array of medications that have been used to treat me. I have been getting fluids and glucose continuously, since I have been unable to keep myself fed and watered in the face of my symptoms.
I have also gotten a few bags of red blood and platelets, since those counts got very low.

In addition to the usual blood tests, I have had urine and stool cultures (all negative), a chest X-ray, and CT scans of my sinuses and lungs (nothing amiss).

At this point (Sunday night), I have no fever, and the nausea and mucositis are substantially diminished in their effects. Only the diarrhea remains problematic; I will learn more about the plan for addressing this in tomorrow morning's meeting with the physician team. The really good news is that my white blood cell counts are finally beginning to rise at a fairly rapid pace. This is a very good sign that the stem cell transplant actually worked, which of course was the point of this entire exercise in the first place.

Wednesday, December 23, 2009

A Long Day In IPOP

Today's 10 A.M. appointment at the IPOP clinic did not come to an end until after 5 P.M. I have been experiencing some shortness of breath on exertion the last couple of days; this was accounted for by steadily declining red blood cell counts. Today's count was sufficiently low to trigger a decision to give me a couple of units of blood. There is nothing unusual about this, but it is a first for me. I have been donating blood for 30 or more years, but I have never before been on the receiving end of the transaction, at least as far as I can recall.

It took some time to round up the units, and then each one took two hours to drip in; I was meanwhile closely watched for signs of an adverse reaction (typically a skin rash or hives, or a fever), which did not appear, and my vitals were checked half-hourly.

I noticed the enhancement to my energy level even on my walk back to the apartment. Of course the hope now is that the transplanted stem cells will soon begin to get to work manufacturing the red blood cells I require.

Tuesday, December 22, 2009

Struggling Forward

My blood cell counts are striking bottom pretty much on schedule. Over the next few days, they should begin to recover, aided in part by the daily injections of Neupogen that were commenced on Monday.

Meanwhile, some of the side effects have intensified. My original anti-nausea drug, prochlorparazine, was not doing much good, so now we are trying ondansetron again. Due to some mucositis in the throat and esophagus, plus diarrhea, I am having trouble keeping myself properly hydrated, so I have been getting IVs for this in the IPOP clinic each day. For all of the above reasons,
I'm also having trouble finding things I can eat and keep down, so I'm losing weight.

On the bright side, so far there has been no hint of fever, or anything else that would indicate that I have any kind of infection requiring that I be IVed with an antibiotic/antiviral/antifungal.

Friday, December 18, 2009

Struggling With The Side Effects

As predicted, I am coping with a collection of side effects of the transplant. The main symptom is fatigue; I don't seem to be able to sleep enough, and I have been sleeping quite a bit. I have to force myself to get up and walk around a bit, for exercise. Brief waves of nausea break over me at unpredictable moments. My appetite is poor, as many foods seem to have a vaguely metallic background taste that I find off-putting. That, plus some esophageal discomfort, causes me to prefer relatively weak liquids, or foods that are on the lighter side, such as soup or fruit.

Then there is the loss of hair. I am beginning to regret my decision to get just a buzz cut, instead of having my head shaved. Even with short hair, there is a lot of it, filling my bed and clothing and towels and clogging the shower drain. I am reminded of the character in the "Peanuts" comic strip -- named "Pig-Pen", I believe -- who moved through the world in a cloud of dust and grime and clutter. I am moving through the world in a cloud of falling hair.

Based on the daily blood tests, so far I have not had to have anything special done to me in the IPOP clinic. We are watching the blood cell counts continue to drop; they still have further to go before they begin to bounce back.

Meanwhile, of course, Huong is watching over me like a mother hawk over her chicks, so never fear. Her main adversary would seem to be boredom; perhaps the big snowstorm that is approaching will provide a bit of a diversion. It's supposed to give us 18-24 inches of snow by early Sunday, here in the city.

Wednesday, December 16, 2009

Stem Cells Transplanted

After battling against insomnia again last night, I had to fight off a couple of brief waves of nausea this morning. I was previously armed with the anti-nausea drug prochlorperazine to use if needed, so I have resorted to that.

When we arrived at the IPOP clinic for my 10 A.M. appointment, we were informed that the transplant would not begin until noon; so after having blood drawn as usual, we went home.

At noon I was
first set up with IVs of Zofran (for nausea) and Benadryl (to defend against a possible reaction against the preservative used for the stem cells). The latter made me extremely foggy. The frozen stem cells were brought out and defrosted in a warm water bath. The two large bags I had seen taken away at the end of the apheresis procedure had been reduced to just two small bags of straw-colored liquid. It took only about twenty minutes for them to go in. I was topped off with the inevitable saline flush. I was kept for an additional two hours, as my "vitals" were taken each half hour, to watch for any bad reactions, which did not happen in my case. We returned home by around 4 P.M. I left the IPOP clinic with a taste in my mouth resembling that of garlic, which will continue for a couple of days.

Writing this post is taking somewhat more effort than usual, as I am experiencing a great deal of fatigue, and my stomach is a bit unsettled. I am just getting started coming to terms with all the new medications. I have a feeling that the next few days are going to be challenging.

Tuesday, December 15, 2009

Melphalan: Round Two

Today's IPOP clinic session was nearly identical to yesterday's: Zophran, dexamethasone, melphalan, saline. The only difference was that today the nurse cultured the catheter entrance wound in response to Huong's concerns about the color of the immediately surrounding skin. We'll find out the results tomorrow.

All of the really nasty stuff is now in. Tomorrow, the recovery begins, as I get my stem cells back, and we all hold our breath waiting for them to wander back to the bone marrow and begin manufacturing blood cells again.

I did have one side effect as a result of yesterday's chemo: insomnia. I had trouble getting to sleep last night, in spite of the day's vigorous exercise; and woke up several times, having more trouble returning to sleep each time. I'm hoping against a repeat performance tonight.

Speaking of vigorous exercise, we once again set out on a long afternoon walk, this time to the Inner Harbor, about 1-1/4 miles each way. This time, though, I became very tired on the return leg, and we wound up taking a cab home. Once again our route took us past a self-styled patisserie, but this one turned out not to produce baguettes at all. Sob.

I have been given a battery of new drugs that I am to begin taking tomorrow: Avelox (an antibiotic), Fluconazole (an antifungal), and Valacyclovir (an antiviral). This last one is especially important, because many stem cell transplant patients come down with bad cases of shingles or oral cold sores or both. Meanwhile, I am supposed to stop taking the allopurinol, since we will not be killing any more cancer cells.

Monday, December 14, 2009

Melphalan: Round One

After all the fuss I made over it, today's chemotherapy session is going to sound anti-climactic. We arrived at 10 A.M., and after getting blood drawn for the inevitable battery of tests, I was connected to the IV machine, and dosed with (you guessed it) dexamethasone and Zofran (ondansetron). Once these had gone in, the nurse once again donned the protective clothing and gloves, in order to handle the bag of melphalan. This took a mere twenty minutes to go in. Finally I was topped off with a bit of saline flush, and then turned loose. We returned home by about 12:30 P.M.

I think I forgot to mention that, for the IVs, the IPOP clinic uses the Hospira Omni-Flow 4000 Plus. This machine can multiplex up to four inputs (bags or syringes) onto a single output tube going to one of my catheter lumens. Each input can be independently controlled in terms of flow rate, the conditions on which it alarms, etc.

So far (knock wood) I don't seem to be feeling any negative effects; of course I expect this to change sooner or later. But this afternoon, the weather was so fine, and I felt so strong, that we undertook a major walking expedition. We walked about a mile south to the Fells Point neighborhood, in search of French bread. The walk was challenging for me, requiring navigation along broken concrete or cobblestone sidewalks, and to negotiate busy intersections. In addition, in one direction the route is fairly steep downhill, so of course the return is uphill. Our plan was that I would walk as far as I could, and then if I ran out of steam, we would resort to a cab. That didn't turn out to be necessary, though; I was able to make the entire journey on foot.

We have been conducting Internet-based research on such topics as the locations of Baltimore-area grocery stores (Asian markets in particular), and bakeries purporting to produce baguettes (the bread type, not the diamond type). Huong has pretty exacting standards for baguettes; common failures are crusts that are insufficiently crispy, or hearts that are too doughy. Chances are good that the "artisanal" baguettes found in the bakery section of your local upscale supermarket are failures on one or both counts. Today we were targeting an ersatz
patisserie in Fells Point said to have baguettes; it did, but the crusts were not quite crispy enough. We bought one anyway. We also took a break over coffees and croissants; I was thus sufficiently fortified for the return walk.

Sunday, December 13, 2009

Crossing the Rubicon

Tomorrow I will descend into a tunnel of unknown length and darkness. I can turn aside from my present course at any time up until 10 A.M. Monday; I can finally reject the oncologists' advice, go home, and consume only green tea, fish oil, and flax seed, or whatever is the favored alternative cancer cure of the moment. But once the poison begins to drip into my catheter, there is truly no turning back; my immune system will begin to die, and then only the stem cells extracted last week can save me.

There is no way to predict exactly what is going to happen next. It is possible that at some point I will become incapable of updating this blog; in that case, I may ask Huong to take over temporarily.

No matter how well or badly things go, what is certain is that I must be kept substantially in isolation from the outside world for some time. Since Huong will be responsible for monitoring my state 24/7, she will share this isolation to a large degree. Her home caregiver role, once virtually ignored by the medical establishment, has gained increasing attention in recent years, especially as increasing proportions of the bone marrow and stem cell transplant procedures have been shifted from inpatient to outpatient, thereby making the outcomes increasingly dependent on the performance of the patients' caregivers. And what has become apparent is that, in many ways, the caregiver's role is more difficult than that even of the patient. In addition to dealing with a person who is in pain and to some degree incapable, the caregiver must continue to carry out all the standard functions required to keep a household running. Many caregivers are overwhelmed by this combination of burdens; many turn out to require treatment for depression at some point.

One thing that seems to help is reassurance that the caregiver has not been forgotten by the members of her support group. Although physical contact may be problematic, contact by phone or e-mail can go a long way towards helping a caregiver to maintain the necessary level of psychic energy; e-mail might be more convenient, since it can be processed at the caregiver's convenience, but the sound of a human voice has its own particular palliative effects. If you consider yourself a member of Huong's network, I would ask you to remember her in the coming weeks. I understand that this will be more difficult than it ordinarily would be, coming as it does during the busy holiday period, which is why I am broadcasting this annoying reminder here and now.

Thursday, December 10, 2009

A Lull In The Action

Now that my stem cells have been harvested there is no longer any need to get to the IPOP clinic for tests so early in the morning. Today's appointment was for 11:30 A.M., so we were able to sleep in for a change. The tests showed nothing amiss, so we were dismissed around 2 P.M. Our next appointment at the IPOP clinic isn't until 10 A.M. Monday, so we have returned to Avondale for a couple of days; there are always things that need to be done there.

There is also no need, for now, for either Neupogen or Cipro, so these have been dropped from my roster of medications. I know that Neupogen at least will make another appearance after the stem cell re-infusion; I'm not sure about Cipro.

On Monday, the two-day assault with melphalan begins, followed by the re-infusion on Wednesday; it's likely to be a pretty tough week.

Wednesday, December 9, 2009

Stem Cells Harvested

This past Sunday and Monday my white blood cell counts were bouncing along the bottom, so I was dismissed from IPOP pretty early both days. But by Tuesday they had recovered substantially, so even though I was still not ready and was again sent home early, I received a phone call from one of the IPOP nurses early in the afternoon warning me that there was a significant possibility that the harvest could take place Wednesday, if the trend continued. I was instructed to prepare myself for a longer day.

Sure enough, by 9 A.M. Wednesday morning I was hitched to the apheresis machine. Both lumens of my catheter were fully engaged, and I was getting a very strong saline solution added to the return leg -- strong enough to cause an unpleasant metallic taste in my mouth. Obviously a machine like this does many things automatically, but the nurse running the show still had a great deal to do for the three-and-a-half hours the procedure lasted. For starters, shortly after getting the machine started, she announced that she was unhappy with the outbound flow rate; this was remedied by pausing the machine and switching all the tubing between the two lumens. As the machine did its work, she made adjustments to certain of its parameters. Every thirty minutes, she took blood from a branch on the outbound leg and sent it off for analysis, to make sure the cell counts and certain other numbers continued to be satisfactory. She measured and recorded my "vitals" (body temperature, blood pressure, heart rate, and dissolved oxygen) nearly as frequently. When I began to feel cold, as often happens in the course of this procedure, she covered me up. When I began to feel some tingling in the ends of my fingers, she backed off the outbound flow rate a couple of percent. She kept me supplied with drinks and cookies. And when the saline solution and drinks eventually filled my bladder, which happened a couple of times, she took care of that as well (and that's all I'm going to say about that).

Eventually time passed and the procedure completed; the "product" was declared to be of top quality. This consisted of a bag of straw-colored plasma, and another bag of blood colored a dull dark red. This second bag consisted mostly of stem cells, but also some red blood cells and platelets that had escaped the machine's filtration mechanism. Before being frozen, the contents of this bag would have to undergo a second round of filtration, which I did not observe.

Often apheresis costs the patient enough platelets that it is necessary to wind up with a blood transfusion to replace them, so I had to hang around and wait for the results of the last set of tests to determine whether this should be done in my case. Fortunately my only problem turned out to be a potassium deficiency; I was given a few pills to take and was sent home. So, unless I have some sort of delayed bad reaction
overnight to something or other, I would have to say that the stem cell harvest went about as well as could be hoped.

Saturday, December 5, 2009

First Week of Mobilization

This past week has consisted mainly of watching the fatigue and (thankfully mild) nausea caused by the big hit of Cytoxan recede, and watching the anticipated side effects of the daily shots of Neupogen not take their place. These were headlined by bone pain; supposedly, in some patients this can be bad enough to require the administration of substantial quantities of pain relievers. I experienced some fleeting pangs in some of the joints of my fingers and in my knees, but otherwise nothing that I would have noticed were it not for the fact that I was consciously watching for it. So once again I can count myself fortunate in the area of side effects. Huong has been doing a fabulous job of flushing my catheter, changing the dressings left by the operation, and shooting me up with Neupogen.

On Thursday I began taking Cipro, a "broad spectrum" antibiotic, to defend against the danger of neutropenia. For the same reason, I am supposed to undertake a variety of additional precautions. In public places, I must wear an N95 respirator mask, which is substantially more effective than ordinary disposable surgical masks. I must temporarily cease flossing my teeth, to avoid allowing infections to enter via bleeding gums. And I have to wash my hands every time I turn around.

On Friday we returned to Baltimore and took up residence in an apartment in the cancer center's temporary housing facility. The advantages of this option versus the Tremont Hotel consist in its proximity to the cancer center (right across the street), and the fact that it has complete in-room kitchen and laundry facilities.

Today we began what will probably be the routine for at least the next several days. We appeared in the IPOP clinic at 7:30 A.M., where I had blood drawn; then we hung around for a couple of hours while a couple of dozen tests were run. Mainly, the team is looking at my blood cell counts daily, until they indicate that there are enough stem cells in my bloodstream to begin harvesting them. Unless they do, or unless there is some deficiency that must be remediated by hooking me up to an IV, I am then dismissed for the rest of the day.

There now, I'm finally caught up to the present.

Thursday, December 3, 2009

After-Action Report: 11/26 - 11/29

Still trying to catch up to the present, before I begin to forget things.

Thursday 11/26: We were at home for Thanksgiving Day, and of course nothing happened, medically speaking. I enjoyed a relaxing evening with a small company of family and friends, and I was able to forget my troubles for a few hours. I drank a bit of wine, since I will soon be chafing under a six-month alcohol ban. After dinner a birthday cake appeared, and I was serenaded by the assemblage in the traditional fashion. I was also given the gift of an Amazon Kindle, which should cut down on the clutter of reading material I would otherwise have to drag along with me, to make the long sessions in the Hopkins IPOP clinic bearable. Thanks to all who contributed to the cost of the purchase.

Because of the next day's procedure at Hopkins,
I was subject to a midnight cutoff of any consumption of food or drink. Also, for the same reason, I had been given a set of large antibiotic wipes, which I was expected to use to clean myself from the neck down, both before going to bed, and then again upon rising.

Friday 11/27: We drove back to Baltimore in the morning for the only significant activity of the day, which was to have my catheter installed. Once again I was required to sign a small pile of consents, after which I was conducted into a small operating room. I was given what I believe is called conscious sedation, or twilight anesthesia, meaning that I was not completely unconscious, but experienced no pain. I could hear and comprehend the surgeon's warnings: "...a little stick here... some pressure now... more pressure...". Eventually I found myself in a recovery room with tubes sticking out from under a dressing on my upper right breast, but not much the worse for wear. By early evening we were back in the Tremont Hotel, in exactly the same room as before. The only lingering effect was fatigue, which along with the next day's early IPOP clinic appointment, sent me to bed early.

Saturday 11/28: On my official stem cell transplant calendar, this was Day 0 of my treatment. By 7:45 A.M. I was in a "private" IPOP cubical, measuring perhaps seven feet square, with a curtain providing the "privacy"; and I was attached to an IV machine that was pumping a saline solution into me. The key stem cell mobilization drug, Cytoxan, is in fact a powerful and dangerous chemotherapeutic agent in its own right -- so dangerous, in fact, that the nurse handling it had to wear special protective clothing and gloves, and I had to be given a collection of protective substances both before and after receiving it. I was given the saline solution for a couple of hours before the two-hour Cytoxan IV was itself begun, and for several more hours after it completed. Meanwhile, I was also given mesna, to protect the inner lining of my bladder from being irritated by the Cytoxan once it had been processed by the kidneys; ondansetron, to combat nausea; and, lo and behold, my old friend dexamethasone, for reasons that remain mysterious. At some point some blood tests were run, and I was found to be low on potassium, and sure enough a bag of some potassium compound in solution was added to the array being dripped into me. By the time the entire process was completed, it was well past 6 P.M., and I was quite bloated around the mid-section; I was told to take an extra dose of furosemide for this before bedtime, so as to lose more of the fluid overnight. Back at the Tremont, I began to feel the nausea coming on, and very nearly lost it after taking my evening medications, but managed to keep everything down in the end.

Sunday 11/29: We checked out of the Tremont before noon, and made our 12:30 P.M. IPOP appointment. Blood tests indicated no need for me to be hooked up to any more IVs, so after getting my first subcutaneous shots of Neupogen, we left Baltimore once again. We were given enough Neupogen to last until we return at the end of the week; I must get shots of it daily while at home.
It is meant to stimulate the production of white blood cells, and their movement out of the bone marrow. I was still feeling mildly nauseated by the Cytoxan, so I was also given several doses of ondansetron to tide me over for the next couple of days, until it could be completely processed out. Other than that, my only continuing problem was fatigue, for which the only remedy was rest.

Tuesday, December 1, 2009

After-Action Report: 11/23 - 11/25

My apologies for not keeping up with the blog. I have been prevented from updating it recently for a variety of reasons; I won't go into these in any detail, preferring instead to devote what little energy I have right now to providing an abbreviated play-by-play of the past week or so, in several installments. So, without further ado:

Monday 11/23: I spent much of the morning on the phone with someone who is going to handle my application for
Social Security Administration disability benefits. I am required to do this by the LTD insurance company currently covering me; but this company has in turn hired another company that specializes in navigating the shoals and bayous of the SSA's application process, which can evidently take five or six months. The first half of the afternoon was taken up by a pretty good physical therapy session.

Tuesday 11/24: Another physical therapy session in late morning to early afternoon. As soon as I returned home, I received a call from the Hopkins transplant coordinator, saying that the oncologist was troubled by some irregularity in my EKG. She wanted me to see a cardiologist down there about this on Wednesday, instead of following the established schedule. Doing this would be mildly catastrophic, since it would alter the entire schedule, pushing everything back; this would of course involve a lot of work. I proposed that she instead fax the troublesome EKG to my local cardiologist, and I would make an attempt (admittedly very unlikely to meet with success) to see him that same afternoon. By some miracle, a cancellation had opened up a 3:00 P.M. appointment. When I arrived, the cardiologist was ready for me; he hand-waved the Hopkins EKG, saying that it was identical to the one he had taken in August. In any case, he saw nothing about it that would justify delaying the transplant. He faxed a note to this effect to Hopkins before COB, thus rescuing the transplant schedule. A major bullet dodged.

Wednesday 11/25: Arriving at Hopkins at 1:30 P.M., we received training around my catheter: how to flush the lumens with Heparin, how to replace the caps; and how to change the dressing around the surgical wound. We also practiced the sub-cutaneous growth factor injections I will be giving myself at home. Finally, we met with the "attending oncologist" -- the oncologist who will actually run the show -- to sign the consents. This again reminded me of a real estate closing, in terms of the number of forms to be signed. This oncologist felt obliged to inform me of Hopkins' 95% survival rate for stem cell transplants. The remaining 5% of course makes more precise the chief oncologist's description of the chances of a fatality as being "not zero". For the return home, we joined the Thanksgiving Holiday Weekend parade on I-95, which turned out to be not nearly the nightmare we were fearing.

Sunday, November 22, 2009

The Johns Hopkins IPOP Clinic

Some of the e-mails we have received from people expressing a desire to visit me while I am being treated at Johns Hopkins have made me realize that I haven't adequately explained the fact that I will not actually be admitted to the hospital until after the transplant has taken place, and then only if I get into serious trouble involving some sort of infection. The entire process leading up to, and including, the high-dose chemotherapy and the re-infusion of my stem cells, will be done on an outpatient basis. This method of doing an autologous stem cell transplant is relatively new; until less than a year ago, I would have been admitted to the hospital for at least part of the process. Hopkins has yet to update its patient training materials to reflect the new facts. Similarly, the description on the Hopkins web site of the IPOP clinic where the treatment takes place continues to make it sound as though I will definitely be in the hospital for part of the process, but this is no longer true.

Because the IPOP clinic is visited
daily by patients with badly impaired or nonexistent immune systems, there are rules forbidding anyone but patients and their caregivers from being admitted to it. It even has its own HVAC system fitted with special HEPA filtering designed to reduce particulates in the air to a minimum; you can think of it as being a kind of medical "clean room". Obviously, allowing the general public to wander into and out of this environment is out of the question.

Depending on where I am in the process, I may be in IPOP for as many as twelve hours at a stretch. In any case, if I have any visitors, they won't be coming to the hospital, but rather to the Tremont Hotel, or wherever it is I will be staying at night; and most likely in the evenings, since the schedule for my daytime IPOP sessions will be difficult to predict.

Thursday, November 19, 2009

Stem Cell Transplant Evaluation

On Monday afternoon, Huong and I drove to downtown Baltimore and checked into the Tremont Plaza Hotel for a two-night stay. People travel to Baltimore from all over the world to be treated at Johns Hopkins, and the Tremont has a long history of catering to Hopkins patients, offering them special room rates, and such services as a shuttle bus that will take them to and from anywhere on the Hopkins campus, which is a couple of miles distant. Arrangements can also be made to use the shuttle to reach the shopping, dining, and entertainment opportunities offered by the Inner Harbor area, which is actually close enough for the healthy to reach on foot, but possibly not for someone who is struggling. The upper floors have suites with separate bedrooms that can be closed off from the rest of the suite, which can come in handy in a chemotherapy situation, and presumably in others as well.

Tuesday was a long day, with the first appointment beginning at 7:00 A.M. and the last one ending around 5:30 P.M., and the appointments spread amongst three different buildings. We did a lot of running to and fro, but none of it out of doors, as all of our destinations were either in the main hospital, or in buildings connected to it by an underground concourse, or by an above-ground bridge.

First came the heart tests: a MUGA scan and a plain old EKG. The MUGA scan was a new one for me; it involves extracting a small amount of the patient's blood, adding to it a radioactive tracing substance, injecting it back into the patient, and then putting the patient under the scanning device, which produces a "film" of the heart's beating action.

Following this came a urine test and a spectacular number of blood tests; I became a little concerned when I saw the forest of tubes I was expected to fill. Then I was interviewed by the oncologist's assisting CRNP, who also gave me a very light physical examination. Next came a bone marrow aspirate: bone marrow was extracted from my locally anesthetized hip for biopsy.

The last appointment of the day was for a transplant education class, which both of us attended. We were joined by two other patient-caregiver pairs. As an aside, I have never had much of a problem fighting off temptations to indulge in self-pity, because wherever I go, I am constantly presented with examples of people in worse trouble than myself. Although I was by far the oldest of the three patients in the room, I otherwise had nothing to envy in my two patient classmates. One had endured a much longer and more grueling induction therapy than mine; she had already said farewell to her hair. The other was looking forward to an allogeneic transplant, using stem cells donated by her brother; allogeneic transplants are much more complicated and dangerous than the autologous transplant that I will undergo. One thing I learned in this class is that the catheter I will get is not a Hickman line after all, but a pheresis catheter (also called an apheresis catheter). Another is that one of the mobilization drugs I will get -- Cytoxan -- also has anti-cancer properties, and is used to treat various disorders, both cancers and non-cancers.

I felt barely human when I finally returned to the Tremont on Tuesday evening; I wasn't sure I would be able to remain standing long enough to prepare myself for bed. Wednesday's schedule was substantially more relaxed, beginning at 9:00 A.M. and ending before 3:00 P.M. First came a set of pulmonary function tests, measuring my lung capacity and my ability to efficiently utilize the oxygen drawn in by my breathing apparatus. Following this were, incredibly, more blood tests; had they not actually taken place, I'm not sure I would have believed that there were any remaining to be done. Possibly, they were designed to throw more light on issues hinted at by the results of Tuesday's tests. The day wound up with CT scans of chest and sinuses, and a bunch of X-rays.

Some of the tests were turned around before we left Baltimore; apparently the results of all these were in the expected ranges. We'll have to wait for the remaining results; in particular, for the bone marrow biopsy.

Sunday, November 15, 2009

Outpatient Physical Therapy

I believe that I previously mentioned the fact that the home physical therapist discharged me towards the end of September, declaring that any further progress on my problems with balance and proprioception required the use of equipment that she could not bring with her on her visits to my home. But I was prevented from switching to outpatient physical therapy for most of October, due to the COBRA war. In the interim, I continued to perform the exercises that had been bequeathed to me by the home physical therapist, increasing the number of repetitions or the size of any hand or ankle weights involved, when doing so seemed appropriate.

Since health insurance has been fully restored, I have been to several outpatient physical therapy sessions. The pair of young men who have ganged up on me typically work me for an hour and 15 minutes or so. The cardio and strength training involves equipment that any fitness club would have; with respect to these aspects of the therapy, the therapist is more or less merely playing the role of a glorified personal trainer. The major difference lies in the balance and proprioception remediation. For this, some of the drills involve the use of a teeter-totter-like board on which one attempts to remain standing; depending on the orientation of the board, the teetering is either side-to-side or front-to-back. I find this quite challenging; I'm not sure I would have done all that well at this even before I went to the hospital.

Another game involves standing on a block of soft foam with eyes closed, attempting to remain balanced while the therapist pushes or pulls at different places and at different angles, on the shoulders, arms, legs, or back. The therapists' justification for this exercise is that, since I am not getting the same information from the feet, ankles and legs that I used to get, I am relying more on visual cues; but that is not going to help me in darkness (and in fact at this point I am afraid to attempt to navigate in a completely dark space).

Then there is a set of exercises that involve stepping over a series of low barriers of different heights. The possible variations are practically endless: the takeoff can be mixed up between the right or left foot; the orientation of the body can be straight ahead or side-to-side; the movement can involve touching the top of the barrier with the leading and/or trailing foot before continuing over, or not; the distances between the barriers can be varied; and so on.

On the whole I'm enthusiastic about all this; unfortunately, as I get deeper into the stem cell transplant process, I will have to curtail these sessions, and then eventually suspend them altogether, until some time after I have returned home from Baltimore. I keep forgetting to ask if my transplant team will include a physical therapist; I hope it does.

Wednesday, November 11, 2009

The Stem Cell Transplant Schedule

Yesterday my case manager at Johns Hopkins sent me the schedule for the entire stem cell transplant procedure. This is still missing some of the times, but at least we know what is going to happen on what dates. Here is the run-down:

11/17/09 - 11/18/09
This is the evaluation phase. I will be poked and prodded and pushed around for two days, so that the team can decide whether or not my body will take the punishment, and to get "normal" baseline data for later comparisons.

This day is for training (e.g. we have to learn how to clean the catheter that I will get), and for the legal stuff (I will have to sign consent forms that hand over my life to Johns Hopkins).

The Hickman catheter will be installed. There is not much else scheduled, maybe because the procedure will be somewhat traumatic.

11/28/09 - 11/29/09
This is the beginning of the "mobilization" phase. I will get one of the drugs involved in chasing the stem cells out of the bone marrow and into the bloodstream. During the following week, which I will spend at home, I will be giving myself injections of another drug that is supposed to help this process.

This is where things begin to get tricky. I will be going to the cancer center each day, beginning today, to have my blood cell counts checked. When the team sees the right counts, they will connect me to an apheresis machine to collect the stem cells. In the event that not enough stem cells can be collected using this method, they will have to get more invasive, and get the stem cells directly from the bone marrow. I hope not.

12/14/09 - 12/15/09
Two days of high-dose chemotherapy. I will be getting melphalan dribbled in; when the process is complete, all of the cancer cells are supposed to be dead, and my bone marrow will be dead as well.

The stem cells extracted earlier wll be pumped back in.

And that's it. In the following weeks, I will be hanging around waiting for the stem cells to make their way back to the bone marrow and begin manufacturing blood cells again, meanwhile trying to dodge anything that would require the services of an immune system, which I won't have. I will be watched very carefully until my blood cell counts have returned to normal; meanwhile, if I do exhibit any symptoms of infection, I will be pumped up with whatever antibiotic or antiviral is deemed appropriate.

Friday, November 6, 2009

The End of Low-Dose Chemotherapy

This past Sunday, I took the last of the Revlimid for the fourth chemotherapy cycle; on Monday, I took the last big dose of dexamethasone for the cycle. On Tuesday, I had blood drawn for the usual battery of tests, the results of which we discussed today with the Christiana oncologist, who declared them to be "perfect". He has been in direct contact with the Hopkins oncologist, and they appear to be in agreement that I am an "attractive" candidate for stem cell transplant. He revisited the fact that my initial biopsy, run on a bone marrow sample taken from the hip, was "clean", which he takes to be an indication that the scope of the cancer is limited. I will not begin a fifth chemotherapy cycle, since the stem cell transplant process will begin in less than 28 days; it is not a good idea to interrupt a cycle in progress.

We asked the Christiana oncologist about the Hopkins oncologist's revelations regarding the evidence -- or lack thereof -- of the efficacy of stem cell transplant. He knew exactly what we were talking about: the fact that the studies justifying the procedure were done with chemotherapeutic agents no longer in use. "It's controversial", he admitted. But in the end, his position is the same as that of the Hopkins oncologist: we have to work with the tools available, which consist of stem cell transplant, and not much else. It's not unreasonable to assume that undergoing the procedure using the currently available drugs will improve my chances of survival over not doing so, since these drugs are thought to be superior to those used in the studies.

So the Christiana oncologist has turned my case over to the Hopkins oncologist for now. I do not have any more appointments scheduled with him. After the transplant, once
I have returned home, I am to call him, so that he can resume responsibility for my care from that point onward.

Tuesday, November 3, 2009

Hopkins Seems Efficient; Penn, Not So Much

Johns Hopkins is indeed a big bureaucracy, but seemingly a relatively well-organized, nimble one. We have been assigned a case manager, who already has the insurance approvals for the entire process lined up. The tentative schedule she laid out for us in a phone call today has the evaluation phase (the tests that will indicate whether or not I can take the punishment) beginning on November 16. The overall schedule pretty much swallows up the holiday season. We would have full days at the cancer center on both the day before and the day after Thanksgiving. I would get the big doses of chemotherapy drugs on December 14-15, with the infusion of stem cells collected earlier taking place on the 16th, which means that I would likely still be in the dangerous recovery phase on Christmas and New Year's Day.

Meanwhile, I was informed today that Penn has canceled the initial consultation that we had set for November 5, because the oncologist we were supposed to talk to will not be in the hospital that day, due to a change in his schedule. I am supposed to call back to reschedule, but at this point it seems likely that by the time we could get another appointment, we will already be too far down the road with Hopkins to make switching away from them feasible. So I think Penn has delayed itself out of the running.

Monday, November 2, 2009

A Puzzling Insurance Situation

JDA provided me with the typical group term life insurance, in the amount of twice my annual base salary. This was another benefit that I lost on September 30. A couple of weeks ago, I received a letter from the life insurance company, offering to convert to a very expensive individual whole life policy. By "expensive" I mean that I would have to pay in excess of $700 monthly for coverage in the same amount as before.

The letter referred to this as "an option", so I queried the JDA benefits admin on whether there was maybe another option, namely one that would somehow let me just continue the group term coverage, hopefully at substantially lower cost. It took her awhile to arrive at the answer, which I reproduce unedited here, since it seems to me to be immune to paraphrase:

"There is an option to port a policy but associates on leave aren't eligible to port, they can only convert to a whole life policy. Most policies are set up this way because the likelihood that someone on disability could pass increases and the rates on a portability policy wouldn't be sufficient to cover if a death claim were filed.

The other thing I wanted to add about converting is that there is a premium waiver built into the policy. The premium waiver is a waiver of premiums after you have paid 9 months of premiums. You will also get those 9 months of premiums back. In order to qualify for this though, you would have to convert the policy, be on disability 9 months and pay the premiums for 9 months."

To me, this seems inconvenient and arbitrary. In order to determine whether or not to convert, if I care about recovering the premiums, I would have to be able to predict whether or not I am likely to be disabled for 9 months. But also I am reluctant to head into a stem cell transplant sans any life insurance, since the probability that I won't survive the process is (to use the Hopkins oncologist's expression) "not zero"; if it's my time to go, I would like to go believing that I have left my wife in the best possible financial situation I was able to manage. So I have a major conundrum to crack here.

Wednesday, October 28, 2009

The Stem Cell Transplant Chemotherapy Drug

The drug that the Hopkins oncologist wants to give me for the high-dose chemotherapy is melphalan. If you follow the link and go down to where it talks about side effects, you will see a couple that are "common", which is defined as affecting 30% or more of patients. Low blood counts are of course no great surprise, since the stem cells that manufacture blood cells will be killed. I have been lucky to have escaped any nausea with Revlimid, but it looks like my luck might run out with melphalan.

The "less common" side effects, affecting fewer than 30% of patients, are both more numerous and scarier. And some of them come with the caveat that they really belong in the "common" category for high-dose patients, or are more severe for high-dose patients. So it's a pretty good bet that I won't be looking and feeling my best after getting this stuff.

One of the "less common" side effects that is "common" for high-dose patients is hair loss. The Revlimid is already causing a bit of top-side thinning, but I have to expect that I will lose it all to melphalan. I have pretty much decided that I will travel the shaved-head route, or at least the buzz-cut route, in advance. Incidentally, I have nothing against Patrick Swayze, but the media portrayals of his decision to shave his head prior to chemotherapy, as somehow betokening a special strength of character, were just silly. Patients headed for heavy-duty chemotherapy that is likely to cost them their hair do this routinely. There is nothing whatever rare or special about it.

Monday, October 26, 2009

Some Victories In The Insurance Wars

Late Friday I was informed by the JDA benefits administrator that my medical insurance coverage had been completely restored. Of course I was somewhat suspicious of this assertion, since it was the third time I had heard this recently, and the previous two times it had been proven to be mistaken. So I reserved judgement until I could verify this independently. Saturday afternoon I received some positive evidence when I tried, and succeeded, to invoke the medication coverage to refill a couple of my prescriptions. So far, so good.

But the real test could not be carried out until this morning, when the insurance company customer service reps (CSRs) returned from the weekend. The CSRs have been the major stumbling block all along; it took quite a few phone calls and e-mails to convince the benefits admin to investigate my suspicion -- which turned out to be correct -- that the database that the CSRs consult is different from the one that she was accessing, and that their database had not been updated. Every time I was assured that I was "in", I had merely to talk to a CSR, and be told once again that the last thing their system was showing was that my coverage had been terminated on September 30, and that I was not currently covered. But finally, this morning, I heard a CSR utter the words I was longing to hear: "You're covered". Say amen, somebody.

Also late Friday I received a call from my LTD insurance case manager, informing me that my application had been approved. Sometime this week they will cut a check for me for this month. Another big relief.

So the home team isn't doing too badly in the insurance theater
right now. But I don't want to say that too loudly, lest I thereby arouse the jealous wrath of whatever gods have been charged with running this show. Again.

Sunday, October 25, 2009

The Hopkins Oncologist

As mentioned earlier, on Thursday we traveled to the cancer center at Johns Hopkins in Baltimore. From Avondale, by the time you struggle your way into town and into a space in the cramped parking garage underneath the Weinberg Building, it’s a good hour and forty minutes. When we emerged onto the main floor of the center, at around 2:15 P.M., the place was a beehive of activity. It’s obvious that a lot of cancer is being treated here. I was told to arrive an hour before my 3:30 appointment, so that I would have plenty of time for the first-time registration process. That accomplished, we were directed to a reception area in which a large number of people were awaiting their appointments. I feared a long wait; we were early, and my experience has been that, for a 3:30 appointment with an oncologist, you never get called as early as 3:30.

Image my surprise, then, when I was called for at 3:10 P.M. We spent the next 90 minutes with the person that I will henceforth identify as “the Hopkins oncologist”, to distinguish him from “the Christiana oncologist” (or just “the oncologist”).

The first thing that became apparent was that there had been some miscommunication between the staffs of these two oncologists. Although I had been told earlier that the Hopkins oncologist had obtained from the Christiana oncologist everything necessary for an initial consultation on my case, that was in fact not quite true; some, but not all, of the necessary material had made the jump in time. It was therefore necessary for me to recite once again the short version of the story of my ordeal up until now. Then, after asking me a series of clarifying questions, the Hopkins oncologist launched into his pitch.

The Hopkins oncologist’s team does almost 300 stem cell transplants each year. It is just about as much a routine as such a complex process can be. But every case follows its own course, since every patient reacts uniquely to the chemotherapy drugs, encounters different difficulties in the recovery phase, and so on. But then he said something that I was really not expecting:

“We really don’t have good evidence that the high-dose chemotherapy provides any additional benefit”.


He explained himself by showing me graphical representations of the survival data collected as a part of the original long-range studies comparing high-dose with low-dose chemotherapy treatments for hematological cancers. These showed a clear advantage for high-dose chemotherapy. “But these studies were done in the early 1990’s, with the chemotherapy drugs in use twenty years ago. The drugs we use now are completely different – much better. There is no way to know if high-dose chemotherapy would still compare so favorably with the low-dose. No one is going to repeat these studies anytime soon. They are very expensive to do. But this is the only evidence we have, so we have no choice but to continue to recommend stem cell transplant for patients like you.”

And by extension, I have no choice but to undergo stem cell transplant, unless I am happy with the idea of being a one-man control group. So much for the facile assurances that we would save many billions of dollars, if only physicians could be prevailed upon to practice “evidence-based medicine”, thus eliminating “unnecessary” treatments.

If I decide to go ahead with stem cell transplant at Hopkins, I would be assigned a case coordinator, who would handle all of the logistics leading up to the beginning of treatment. It would take about a month to get everything lined up (getting insurance approvals, making short-term housing arrangements, scheduling lab and clinic times, etc.); meanwhile, I would continue the low-dose chemotherapy regimen. When asked whether I should go ahead with the outpatient physical therapy, which would of course have to be interrupted for the transplant, the Hopkins oncologist answered in the affirmative: “You want to be as strong as possible for this”. And as fat as possible; this is one of those rare cases in which fat people do better than thin people.

Friday, October 23, 2009

The Stem Cell Transplant Saga Begins

Yesterday Huong drove me to Charm City for my first stem cell transplant consultation. This took place at the Kimmel Cancer Center at Johns Hopkins. Before I get into what transpired there, though, I will first provide a brief rundown on what stem cell transplant involves. I will do that in this post, and then discuss the details of the consultation in a subsequent post; otherwise, this one will go on way too long.

I will not repeat here the description of how multiple myeloma works included in an earlier post; I encourage the reader to review that material first, before continuing with this post.

What I have been getting for the past four months is low-dose chemotherapy. This has been killing the cancer cells, meanwhile having fairly minimal impact on the systems that must be kept working. In my case there was some concern about cardiac effects, but they turned out to be non-life-threatening. There are some other symptoms (e.g. muscle cramps and spasms), but they are being managed as well.

Stem cell transplant is a strange combination of early 21st century biochemical magic with a nearly medieval brutality. In its simplest possible terms, it is just one-time, very-high-dose chemotherapy; all of the other maneuvers involved are designed either to prepare the patient for this chemotherapy, or to help the patient survive the effects.

Before anything else, the patient must be vetted for eligibility by means of a series of tests designed to gauge the patient's ability to survive the process. High-dose chemotherapy, although it has become much better targeted over time, is still a relatively blunt instrument; it puts tremendous stress on certain internal organs and systems, and although permanent damage is relatively rare, temporary damage is much more common. These organs and systems must be tested to ensure that they will be able to take the strain without completely failing, and eventually recover their normal ability to function. These tests also provide a baseline picture of the patient's status that can be compared with that provided by the same tests performed later in the process.

Some types of stem cell transplant involve third-party bone marrow donors, but in the type I will get -- called an autologous stem cell transplant -- only the patient's own bone marrow is used. The transplant begins by injecting the patient with a drug that will cause stem cells to migrate from their usual residence in the bone marrow into the bloodstream. Once this has happened, the patient is connected to an "apheresis" machine, which extracts blood, filters out and retains the stem cells, and returns the remaining blood to the patient. The stem cells are frozen and stored for future use.

Once enough stem cells have been harvested, the patient is given the high-dose chemotherapy treatment. The objective is to kill all the cancer cells remaining in the patient's body after the last cycle of low-dose chemotherapy. But the drugs also kill the patient's remaining stem cells, thereby destroying the ability to manufacture blood cells; so once the dust has cleared, the patient is reinjected with the stem cells harvested earlier. These will make their way back to the bone marrow, take up residence there, and begin generating blood cells again. Eventually the patient ends up having a restored immune system, minus the cancer cells.

Patients who fail to survive this process almost never succumb while it is in progress; rather, they fail to respond well to post-procedure complications. The patient is extremely vulnerable to infection in the interval between being given the chemotherapy and the full recovery of the immune system. Besides the dangers posed by external vectors of infection, the body itself is
normally host to colonies of various types of bacteria and fungi, which a healthy immune system will keep in check; but the crippled, post-chemotherapy immune system will not be able to perform this task for some time, during which these colonies can grow in an uncontrolled fashion, invading organs from which they are usually kept away. During this time, the patient must be constantly watched for the earliest signs of infection; when such appear, they must be accurately diagnosed (not always such an easy task) and treated, before they have a chance to get out of control. For this reason, the patient must live in close proximity to the cancer center for at least the first month from the beginning of treatment.

Nowadays the entire stem cell transplant procedure is done on an outpatient basis; the patient is never kept overnight, unless of course something goes badly wrong. Post-procedure, patients may have to be admitted to the hospital if they appear to be in danger due to infection, or to the side effects of the chemotherapy drugs.

Wednesday, October 21, 2009

A Little More About The Living Will

Some sections of the Five Wishes living will form contain sets of "standard" statements that are included by default, unless you cross them out. One of the statements that I am choosing to cross out says this:

"I want to die in my home, if that can be done".

Actually, I do want to die in my home, when the time comes. The advantages of dying at home rather than in a health care facility seem fairly obvious, so I won't belabor them. It's only after you're gone that the less desirable aspects of doing so present themselves, and they all fall into the laps of the survivors at once. There is a substantial amount of paperwork involved. Local police must be summoned and admitted to the death chamber, because they must produce a document asserting their inability to find any evidence of foul play. And the person who must cope with all this -- the deceased's principal caregiver -- is certain to be both physically and emotionally exhausted, and least capable of anything resembling clear, level-headed thinking,
at precisely the moment that it is required.

On the other hand, if death occurs in a hospice environment, all of these end-game matters are handled by staff trained for and experienced in doing exactly that. Getting all the loose ends
painlessly and unobtrusively tied up will be a matter of routine, more or less. Meanwhile, counseling is usually immediately available to the survivors on-site, should they express a desire for it.

So even though dying at home, in comfortingly familiar surroundings, sounds preferable to being transported to a hospice and dying amongst strangers in a strange place, I have nevertheless chosen the latter course for myself, for the reasons offered above.

Tuesday, October 20, 2009

Weeping At COBRA's Sheer Stupidity

JDA dropped my employer-provided health insurance on 09/30/09. The COBRA administration company processed my elections (to stick with what we had, retroactive to 10/01/09) and supposedly sent the health insurance company a notification to this effect on 10/05/09. Now here's where the stupidity index of this process suddenly zooms to stratospheric levels. The health insurance company can take up to 15 business days to process such a notification. Of course, it can't really take more than about 15 seconds to actually do this; since I am already in their system, all they have to do is change my status back to "covered".

But that's not the really bad part, which is that, until they have actually done this update to their system, they "can't" -- I'm thinking the correct word here is "won't" -- verify even that they have actually received the COBRA administrator's update notification. So, if one of the parties somehow dropped the ball on the communication of the update notification message, there is no way for me to determine that fact until at least 15 business days after it is supposed to have happened. And of course then a new 15-day cycle would begin, with the COBRA administration company probably just repeating exactly the same process that failed the first time. I told the COBRA adminstration company's CSR I spoke with that this sounds to me like a recipe for catastrophe, to which he responded, "Yes, it certainly does work out that way sometimes". How's that for "customer service"?
If someone was determined to find a way to maximize the frustration and powerlessness of the paying customers in this scheme, I doubt that they could significantly improve on how it works right now.

So, here it is 10/20/09, and the providers have no choice but to treat me as someone who has no health insurance coverage. They react to this is a number of different ways. The best response is "OK, we'll hold onto this until you tell us that it's safe to submit it". Slightly less convenient for me is "We'll bill you". Hopefully this is really code for "Call us back when it's safe to submit it." If I really have to pay out of pocket and then seek reimbursement myself, that could lead to a cash-flow problem, not to mention being a hassle. But the worst response is the one Johns Hopkins uses: "You have to pay at the time of service". The likely fee for this Thursday's initial stem cell transplant consultation at Hopkins: USD 545.00. That's going to be a painful line item on the next credit card statement.

Monday, October 19, 2009

Now I'm Mad At Blogger

When I was composing the previous post, the preview showed the entire table. But when actually published, Blogger simply chopped off the rightmost two columns that didn't fit into its procrustean bed. Maybe eventually I will figure out how to fix this (there's a new post editor that might help), but for now, here are the missing columns:

Category Paid by Plan Paid By Patient
Ambulance 713.50 -
Chemotherapy 692.32 -
Consultation 7,990.61 205.00
Diagnostics 7,347.77 -
Home Health Care 1,650.00 -
Hospital 58,519.66 500.00
Laboratory 4,404.07 -
Medical Supplies 697.90 -
Radiation Therapy 2,451.79 -
Surgery 2,343.14 -
Total 86,810.76 705.00

The Numbers So Far

I believe that I have repeatedly promised to deliver some cost data for this fiasco, without doing any actual work to make that happen. But recently I have made some progress in the right direction on this, maybe. The health insurance company's web site can deliver claim information in the form of comma-delimited report files that can be swallowed by Excel and then subjected to the usual analytical torments. The major impediment to this being truly useful is that these reports include no information that can be used to categorize the claims. But then, I don't care for the categories used in this database in the first place. For example, for my purposes, making a distinction between physician consultations that occurred in a hospital setting vs. those that occurred in an office setting is pointless. On the other hand, I think it is useful to distinguish between image-based diagnostics vs. blood tests. If you disagree, then... get your own blog. OK, so anyway, here are the numbers (all denominated in USD) for the period from June 4, 2009 -- the day the ambulance took me to the hospital -- through September 30, 2009. My apologies if the columns do not seem to quite line up; I am not an HTML god.

Category Billed Amount Network Discount Paid by Plan Paid By Patient
Ambulance 713.50 - 713.50 -
Chemotherapy 2,660.00 1,967.68 692.32 -
Consultation 10,619.00 2,423.39 7,990.61 205.00
Diagnostics 11,832.00 4,484.23 7,347.77 -
Home Health Care 5,610.00 3,960.00 1,650.00 -
Hospital 61,478.81 2,459.15 58,519.66 500.00
Laboratory 7,009.42 2,605.35 4,404.07 -
Medical Supplies 3,374.00 2,676.10 697.90 -
Radiation Therapy 4,514.00 2,062.21 2,451.79 -
Surgery 9,418.00 7,074.86 2,343.14 -
Total 117,228.73 29,712.97 86,810.76 705.00

The "Network Discount" numbers are the amounts by which claims were reduced in honor of the insurance plan's contracts with the providers. There is no way to know how much the providers get up front for being in the plan, or how those numbers could be pro-rated to show the "true" cost to the insurance company. The "Chemotherapy" category touches only the Aredia IVs I have been getting; I didn't know what else to do with these. None of the other medications are in here, which is too bad, but they are in a repository on the mail-in pharmacy's web site. In any case, the cost of medications is completely dominated by Revlimid, which costs the insurance company more than USD 7K per cycle -- close to USD 30K in total for the four cycles so far. And of course, the "Paid By Patient" category doesn't include anything that didn't involve the health insurance company, such as the expensive lift recliner.

I have been trying to get some readings on the cost of stem cell transplants; the numbers I am getting so far are in the USD 100K - 400K range, depending on the "complications" encountered in individual cases. There is no such thing as a "typical" stem cell transplant.

Wednesday, October 14, 2009

Living Will

Nowadays, anyone who finds himself being admitted to any hospital in these United States is going to be asked if he has a living will. If he has a living will, and if this living will is in a form legal in the state in which the hospital is located, it will be added to the patient's medical record, and will be consulted and acted upon, if and when the patient's condition warrants such action. That would be if the patient became incapable of making or communicating decisions regarding the types of life-support measures he would (not) like to be carried out on his behalf by hospital staff. Typically, the living will spells out what should (not) be done if, for example, the patient enters a coma from which he is not expected to awaken, or suffers severe brain damage from which he is not expected to recover. It also confers a durable power of attorney on a hierarchy of one or more individuals, with respect to such issues as being admitted to such health care facilities as hospices and nursing homes; the release of personal medical or financial records; the hiring and firing of health care workers; and the submission of applications for Medicare or other insurance benefits. Finally, it spells out what should be done with the patient's body after death: which body parts, if any, can be donated; whether the remains should be buried or cremated; and where the remains should end up.

I currently do not have a living will, which is a deficiency I am now taking steps to remedy. The regulation of living wills is carried out at the state level, so a living will that is in a form legal in a particular state may not also be legal in a neighboring state. Fortunately, though, there is a non-profit organization, Aging With Dignity, that has a form, called "Five Wishes", that is legal in 40 states, including Delaware as well as both Maryland and Pennsylvania (if I get stem cell transplant, it is likely to happen in one of the latter two). So I am working on completing a "Five Wishes" form in time for my next hospitalization (stem cell transplant may require a bit of hospital time).

Tuesday, October 13, 2009

Driver's Licence; Handicapped Parking Tag

Some of you may have wondering: Does he have a handicapped parking tag? Answer: Yep.

Not a permanent tag, though. The State of Delaware distinguishes between individuals who can operate a motor vehicle but who are considered permanently disabled, and who therefore merit the well-recognized person-in-the-wheelchair icon on their vehicle's metal tag; and those whose disability is considered to be temporary, and who are therefore given a laminated plastic person-in-the-wheelchair card that is hung from the rear-view mirror, and that has an expiration date. I fall into the latter category; my temporary tag expires in July 2012, which should be plenty of time (so I delude myself).

My driver's license was due to expire at the end of November of this year, so recently I overcame my fears and visited the DMV to get a replacement. My concerns centered around the fact that the Delaware DMV reserves the right to test a renewal applicant as circumstances seem to warrant, including a written test or even a road test. I wasn't so much concerned about a road test as a written test; these tend to focus on such forgettable trivia as how many feet from a stop sign or fire hydrant it is legal to park. I was going to show up there leaning on a cane, which could have provided an excuse for an entertainment-starved DMV employee to have a little fun at my expense. I shouldn't have worried. I drew a true silver-back, probably months away from retirement. When he asked about my hair color, I said "gray", which caused him to chuckle knowingly, as he typed in "brown". He did notice my cane, which caused him to ask whether my disability was expected to adversly affect my ability to drive in the longer term. I told him the (possibly spurious) truth, which is that everyone involved believes my disability to be temporary; this was good enough for him, and he waved me through. The guy responsible for producing the final license asked me whether or not I wanted an up-to-date photo, which again surprised me; I replied that if the old picture was good enough for him, then it was good enough for me. As a result, in 2014 -- if I last that long -- I will be walking around with a driver's license with an image of the old, undamaged me, vintage 2004. Schweet.

Monday, October 12, 2009

Stem Cell Transplant Gets A Little More Real

This past Friday, the oncologist announced that he is satisfied that I am responding positively to the chemotherapy. Among other things, comparison of a current skeletal survey with one conducted earlier showed that at least one lesion, on the skull, has vanished in the interim.

To my surprise, he then initiated a discussion about stem cell transplant, before I had chance to do so myself. In all of our previous conferences, he never uttered an unprompted word on the topic, always managing to deflect any suggestion that we should talk about it by dismissing any such discussion as premature. His stated belief now is that I will likely be considered a good candidate for the procedure, based both on how I have responded to the induction therapy, and on the fact that the original bone marrow biopsy failed to justify a positive diagnosis -- multiple myeloma was not confirmed until the T8 tumor was biopsied -- suggesting that the scope of the disease is limited. In any case, he fully approved our recent efforts to initiate consultations with the relevant specialists at both Penn and Johns Hopkins. But since there is no realistic chance that stem cell transplant could begin any time in the next 30 days, he directed me to go ahead with a fourth chemotherapy cycle. So this morning I swallowed the drugs for
Day One of yet another go-round.

As a warning to the reader, I am expecting the stem cell transplant topic to provide plenty of grist for my blogging mill. I would expect future posts to dissect it in more or less excruciating detail, assuming that I really am headed in that direction.

Monday, October 5, 2009

Chemotherapy; Interrogation By The LTD Gestapo

Yesterday I swallowed the last of the third chemotherapy cycle's Revlimid; today I took the last of the dexamethasone. Later this week I will undergo the usual bloodletting, so that the effects can be evaluated by the oncologist in time for our conference on the topic, which takes place on Friday. I could be mistaken, but I believe there are three possible outcomes:

1. I have responded well enough already to go straight from here to evaluation for stem cell transplant.
2. I have responded positively, but require another cycle before stem cell transplant could be considered.
3. I haven't responded well enough to this regimen, and need to switch to a different one.

I don't really think that Door #3 is in the hunt at this point, because the oncologist has been making none but positive noises about my response to the chemotherapy to date. Something would have to have gone very wrong this time around to cause such a dramatic change in direction. So the big decision point should be whether another cycle is needed.

Meanwhile, a representative of the long-term disability insurance company called today, and grilled me for some time about my "situation". There were trick questions along the lines of "Describe a typical day for you at this time." True answer: There is no such thing as a "typical" day, since so much depends on whether or not I have doctor/lab appointments, a physical therapist appointment, etc. I described my recent attempts to determine whether or not I am capable of working full time at this point, and tried to explain why I believe that I'm not capable of performing the role of a full-time JDA employee on a consistent basis for the time being. I was also forced to revisit the short version of the story of the damage the cancer has done so far, and the various therapies I have undergone to date, and am likely to undergo in the foreseeable future. It was clear that my interrogator knew very little about multiple myeloma, and the therapies used to combat it; finally she declared my disquisition on the topic to be "very interesting". She requested a list of the medications I am currently taking, and the names and contact information of all the physicians involved; why this information wasn't included in any of the numerous forms I have already had to submit to date remains mysterious, to me. She also suggested that I investigate the possibility of making a Social Security disability claim (probably because LTD insurance payments would be reduced by the amounts of any Social Security disability payments I received?). She ended by warning me that the evaluation of my claim would take her company 45 days (of which I assume 43.5 days will consist of my claim forms sitting in someone's inbox). Well, that beats the Social Security Administration's "four to five months" to process a disability claim. Perhaps the President could be persuaded to take on disability insurance reform next? Kidding.

Thursday, October 1, 2009

PT, Insurance, Stem Cell Transplant...

If this blog seems to have lost some momentum lately, there are some pretty good reasons for that. Not much of note has been happening, really. I continue to take all the usual pills, and (mostly) do the usual physical therapy exercises. I do a little work for my team at JDA, whenever they have something they think they can farm out to me without much risk of being blocked if I'm too slow. My transition from the walker to the cane is complete, and I even mostly walk completely unaided when at home.

I wouldn't dare try that trick in the outside world, though. My problems with
balance and proprioception are still too significant to allow me to do that with any safety. And the home physical therapist thinks she has done all she can do for me in these areas. So she has discharged me, so that I can continue my therapy as an outpatient at a facility that has the right kind of equipment to work them. Today I visited such a facility that is not too far away from home; so now I just have to get the prescription and the insurance authorizations rounded up, to get started there.

Speaking of insurance, today we also mailed off my completed COBRA election form, accompanied by the associated scary-looking check. We'll have to write similar checks every month, as long as I remain on long-term disability. Actually, I am technically not yet on LTD, since the insurance company has not yet received the oncologist's completed forms; so I have to call the oncologist's office to badger those responsible for doing this....gah.

Yet another insurance-related issue is the fact that I can't do anything related to stem cell transplant at Christiana Hospital, since that hospital is not in the insurance plan's provider network for this therapy. The closest in-network facilities for stem cell transplant are the cancer centers associated with the University of Pennsylvania in Philadelphia, and with Johns Hopkins University in Baltimore. Since I am now well into my third cycle of induction therapy, we decided that it was time to begin making some contacts at these centers, in case there is anything I should be doing now, in preparation for becoming their patient at some point. We got some names and phone numbers at both centers from the oncologist, and began making some tentative probes of their outer defenses today. Initial impressions: Penn seems substantially less bureaucratic than does Hopkins. With Penn, I got right through to the assistant of the director of the stem cell transplant program, who agreed to arrange the transfer of my records from Christiana and then call back to arrange an appointment. With Hopkins, on the other hand, I had to navigate an automated telephone menu tree, finally winding up with a person who offered to do nothing for me. I must round up my records myself, fax them to a number there, and then call again to find out what to do next. Well, it's not like they need my business, being the third-highest-rated cancer center in the country (according to US News and World Report); whereas Penn is ranked fourteenth. Hopkins is also more distant, thus less convenient. But this is just the beginning of this phase of the game; many things will bear on the final selection of a facility for stem cell transplant, when the time comes.

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".