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.
Wednesday, October 28, 2009
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.
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”.
Huh?
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.
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”.
Huh?
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.
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.
"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.
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.
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.
| 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).
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.
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.
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.
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.
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.
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