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.

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).

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.

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.

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.

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.