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.