Epilogue

Back to...normal? 3/9/2004

It has been a while since I last wrote.   Seems this is good for me, and bad for you - you're forced to read all the gory details when I'm being ravaged by bizarre treatments and tests, but when I finally get a break, I don't say much.   So it goes...

Since my last post, I've had my six-month PET scan and blood workup from the kids at the BMT - and nothing but good news.   I've also gone on a leave of absence from my job for a year.   It seems that I'm feeling much too good to be asked to sit in a cubicle for 8+ hours a day.   I'm definitely enjoying my time off.

Jill and I are in the midst of wedding planning right now, and have apparently decided to spend as much time swimming in the ocean as possible in the near future.  She just won a trip to the Bahamas for a week from her job, we're off in a few weeks for a little R&R.

For the most part, my health concerns are buried in the back of my mind, and I am feeling stronger all the time.   Around the time of a checkup or scan, I definitely get very anxious however, and sleep becomes a scarce commodity.   Such is the life of a cancer survivor, the good news is that it seems to be getting better as time goes by.  

Published! - 5/18/2004

I'm not sure it is 100% official yet, but I was looking around at the website for Cure Magazine (where I submitted that essay many months ago) and came across the website for their soon to be published sister magazine, Heal.

It appears they're going to give me some column inches on the website, you can check it out here.

In other news, Jill and I are off on Friday for the big event, we'll be in Tobago for just over a week before the ceremony, and then sailing around St.  Vincent for almost a week after.   For pictures and stories about the trip, check out my sister website, Married in Tobago.

Hope everyone is doing well!  

Happy re-birthday to me - 6/18/2004

My one year anniversary of the stem-cell transplant is coming up, the 25th of June.   I can't believe that it has been an entire year since that happened, it hardly seems real to me anymore.

I'm feeling great and stronger all the time, and didn't even pick up any nasty bugs on the trip for my wedding and honeymoon down on those tropical islands.   If you're jonesing for a little more of my rambling, you can read my journal on the wedding website.

The only other news to report is that I got a call from JP at Dr.  Pendergrass' office a few days ago.

"You know that appointment you have tomorrow" she asked?

"Ummm...no," I replied, completely oblivious.

"Well, Dr.  P is not going to be able to make it."

Since I have not yet had an appointment on the originally scheduled day, I was absolutely not surprised.  "Oooh, well, ok then."

Pile on - 6/27/2004

I met with Pendergrass last week, and the visit was gloriously uneventful.   I had to update my patient records (it seems that I've done that an incredible number of times) again, it had been a year since I'd last done so.

The nurse who drew my blood was one of the former chemo nurses, she said she was just helping out as one of the 'regular' nurses had recently quit.   Having her stick me brought back some disquieting memories, but it was over very quickly.

Dr.  P saw me for just a minute, saying that my blood counts looked good, and mentioning that I would need to have my 1-year PET scan soon.   I didn't have the heart to tell him that the BMT clinic had already called to schedule it.   If the circumstances were not so serious, I would find their incredible lack of communication hilarious.

I have my next PET scan on Tuesday of next week, I'm thinking I had better call Guiness, as I'm fairly certain I'm approaching record-holder status for quantity of injected radioactive glucose.

I'm sure there will be some lost sleep waiting for the results of the PET next week, but there is not much that can be done about that one.

More later...  

Update - 4/28/2005

I am recently back from my early retirement - I can't say enough good things about it.   However boredom and the lack of steady income has prompted me to return to the working world.

On the health front, I have had a few periodic checkups since the last post, and they have all gone exceptionally well.   I continue to feel better all the time, and if it weren't for this damn "aging" process I would be feeling just like my spry old self.  

The only lingering effect seems to be a propensity to get sick whenever I'm around kids or anyone sick (read: kids).   Nothing serious, just a little more frequent onset of colds.

I hope all of you are doing well.   To anyone who has been recently diagnosed, is undergoing treatment, or has cancer in their past I wish you all the best.

Feel free to contact me or leave me a comment (click the link below).  

Update - 8/22

Johnny Paycheck provided great inspiration for me recently, as cancer proved to have a lingering effect on my mental health.   I had been back at work for a few months, and it just wasn't cutting it for me.   Spending way too many nights away from home in hotels, getting stuck at the Dulles airport countless times, and being locked in a conference room all day with less than genuine individuals really took its toll on me.   After a particularly disenchanting week, I called my 'boss' (the partner that I was working for) and told him that I wouldn't be joining them that particular week, or any week following for that matter.

I think I've mentioned this particular movie before, but the moment that I decided to leave reminded me very much of a scene in Wes Anderson's Bottle Rocket.   Dignan and Anthony are sitting outside Future Man's house entertaining a young co-ed, and Anthony is recounting how he 'just went nuts.' It goes a little something like this...

Okay, one morning over at Elizabeth's beach house, she asked me if I'd rather go water-skiing or lay-out.   And I realized that not only did I not want to answer that question, but I never wanted to answer another water sports question or see any of these people again for the rest of my life.   Three days later I was on my way out to the desert.   And that was that.

Show your support

I have been going back through some of the comments I've gotten for the past several months, and along with several spammy advertisements to buy things like tulip bulbs and levitra, there were a number of questions.   I thought it was time to answer a few of the reader submitted questions.

• First, there were a number of you asking my thoughts on what caused HD in the first place.   I have a lot of speculation about exposure to chemicals, diet, use of antibacterial soaps, etc., but at the end of the day I decided that it is probably not worth the mental energy for me.   I could lose a lot of sleep wondering 'what if I would have taken this vitamin' or 'did I wash my hands too much' but I don't think there is a lot ov value in it.   I know it happened, and I made it through, and there isn't anything I can do to change it now.   All I can do is hope for more answers from researchers studying HD and other types of cancer, and someday for a cure or cancer vaccine of some type.
• Another common question is 'have you changed your philosophy or outlook on life?' In short, not materially.   I try to work less and have less stress in my life, but people are wired in certain ways and I find myself falling back into old routines (working too much, etc).   I do tend to take things less seriously than I used to, there is nothing like your life taking a 180 to prove to you that your life can take a 180, and that the things that you take for granted can change in a heartbeat.
• Finally, I am feeling great!   I still have annual PET scans and blood work done every six months.   I have a lot of energy, and my immune system seems to be returning to normal - at least I haven't been getting as many colds as I had been after being around my nephews and other kids.   My wife and I changed our diet about a year ago too, we are eating a lot less meat and a lot less dairy as well.   I read a book called 'The China Study' and while it didn't have rock-solid linkages between animal proteins and cancer it was enough to make me think twice.   Since all the evidence seems to support eating more whole foods and less processed food and less meat I figure it can't hurt.

Chromosomal Translocation

A few months back during my regularly scheduled CBC with Dr.  Pendergrass, my platelets were a shade low - in the 120's with the normal being in the 140s.   This isn't enough by itself to cause a lot of concern, but he asked that I get tested again in a few months just to monitor.

I had another CBC (well, two to be exact) done in Springfield and the results were about the same, actually a few points lower.   Red cells, white cells, and all else was normal, just low platelets.

Dr.  P got the results and requested a CT scan, but Jill also contacted Dr.  Abhyankar at the BMT where I had my transplant 5+ years ago.   She calls on him through her job, and has stayed in touch with him after my treatment.   He requested that I have a bone marrow biopsy just to rule out MDS, which is a common post-transplant side effect.

We talked with Dr.  A a week after the biopsy, and he said that the initial results were all clear, but that they would have to wait a few more days to get the results of a different test that looked at the underlying chromosomes.

We headed to Tahoe for a break and to celebrate Jill's birthday, and last Friday when we were on the way home I got a call from him - one week after we met to discuss the results of the biopsy.   I had a feeling the news wasn't good, as he initially said he would just email the results of the chromosomal test.

For future reference, it is also a bad sign when a Dr.  asks you if you are sitting down at the beginning of the call.   I was, in fact, sitting down, and went on to explain that they had identified a chromosomal translocation involving the 8th and 13th chromosomes.   What this means in a nutshell is that information supposed to be on the 8th chromosome shows up on the 13th and vice versa.  

Dr.  A didn't provide a great deal of detail as it was a short conversation, but mentioned that we would need to monitor my blood counts more closely, and that I should start talking to my 'brothers and sisters' to start looking for a match that could support an allogeneic transplant.   That means the cells would come from someone else, rather than getting my own cells back as I did with my last transplant.

We agreed to meet in a week to discuss the results in more detail and to map out a plan for how to move forward - that meeting will be tomorrow 24 April.

I've been trying to learn as much as I can about this specific translocation in the past week, and haven't come up with a lot (Google "t(8;13)" for some of the medical literature).   What I do know, is that despite giving me super powers such as the ability to depants someone from across the room (see also:depantser general) this isn't great news.   It is not uncommon among those that have had radiation and high dose chemotherapy, and will generally progress into some type of more serious blood disorder, in most cases some type of leukemia.

So now, we wait.

Jill rallied some troops this week, as coincidentally there was a free drive to get people registered in the national bone marrow registry in Kansas City.   They perform a swab of your cheek, which is used to match your HLA type and determine if you will be a good donor for anyone on the transplant list.  

Here is a shot of some gambling degenerates who went yesterday.   Considering the amount of money I have donated to these guys at a poker table over the past few years, it is definitely in their best interests for me to survive over the long haul.

BMT Meeting - 4/24/09

To quote Teddy KGB, I feel so unsatisfied.

We met with Dr.  Aljitawi yesterday after a long week of waiting.   They started off with a CBC, Lactic, and Chem 7 as usual, and we waited another hour and a half in the exam room for the results to come back from the lab.   When the Dr.  did arrive, he said little more than Dr.  Abhyankar did on the phone a week ago.   He repeated the results of the chromosomal test on the bone marrow biopsy, and said that it was not known to be associated with any specific disorders.   The two things that he said it most closely suggested were non-Hodgkin's Lymphoma (NHL) (I was previously treated for Hodgkin's) or an unspecified myeloproliferative disorder.   I haven't confirmed this with any independent research, but apparently NHL following Hodgkin's would be very unusual.   We asked about time frames for things to progress and again he had no useful information - "It could be months, it could be years."

He suggested that since my platelets were not dangerously low (currently ~120) the best thing to do was to re-draw blood once a month and repeat the bone marrow biopsy when the platelet count reached a magic number of 100 in hopes that the chromosomal markers had reached a state that would more clearly indicate a specific disease type.   For some perspective, the platelet count was normal in the summer of '08, first appeared low in December of '08 (~130) and has now drifted down to around 120.   I got a clear sense that they expect something to go awry, the tests just haven't provided enough clarity yet to let them say with confidence what the specific malfunction will be, or when it will occur.   He additionally confirmed what Dr.  Abhyankar indicated, that when things start to get worse, a stem cell transplant will be the suggested course of action.   My sister would be the ideal candidate provided she is a good match, and after that they would go to the Bone Marrow Registry to try and find a donor.

So again, we wait.

I guess the news is not terribly different than I was expecting to hear, but I was at least hoping for some more detail.   The hardest part for me is knowing what to do now.   Being told that in the months / years to come another transplant will be required but to just hang tight until then makes the 'until then' a bit of a challenge.   However, as I've said, you can get used to just about anything with enough practice.

For all you gear heads out there, here are the results of the chromosomal test, which I had not seen previously.

46,XY,t(8;13)(p21;q14)[2]/46,XY,+mar[2]/46,xy[16]
Sixteen metaphases were normal and four had structural abnormalities.   Two of the abnormal metapahses [sic] had a translocation between 8p and 13q and two had a marker (unidentifiable) chromosome.   A similar t(8;13) has been identified in myeloproliferative disorders and non-Hodgkin's lymphoma.   These findings are consistent with a clonal neoplastic disorder, but do not include classic chromosome abnormalities that can aid in diagnosis subclassification of the neoplastic disorder.

Houston Bound

We got everything set up for a 2nd opionion at MD Anderson, and are flying out tonight.   The process is much more exhaustive than I thought, I will undergo testing for three full days Tuesday - Thursday.   Part of the reason for the long time span is so they can order additional tests on day two if needed based on the initial results.

I'm under the impression that on Thursday we will have some kind of a consult where they aggregate all the results and give us their suggestion on how to move forward.

Not looking forward to being a human pin cushion for three days (especially the bone marrow biopsy redux) but it will be good to have it over with.

More to come later in the week...  

MD Anderson Day 1 - 5/19/09

Just finished day one at MD Anderson.   The complex spans multiple high-rise buildings of steel and glass, and takes up probably half of a zip code.   Great to know that we are throwing a lot of resources at cancer, but they are obviously not expecting demand to fall off anytime soon.

It seems that every other person you see in the hallway, on the elevator, or on the street is a patient or a caregiver for a patient.   Some of them look relatively fit and healthy, and are walking around of their own accord.   A disturbing number are not nearly as well off, and gaze off in the distance as they wait for their next treatment, looking a bit like rotted fruit underneath their surgical masks.   All in all a somewhat depressing way to spend an afternoon.

We were efficiently processed from one stop to the next, each piece of the cog doing a specific task very well.   The only frustrating part was that we didn't get a good sense of the overall approach, but will hopefully get that tomorrow morning when we meet with Dr.  Kadia.

After getting checked in and filling out myriad forms, we met with a nurse who read the forms and proceeded to ask me all the questions again.   Now that I know this, if I have to do it again I'll make sure to give different answers verbally than I write down and see if I can get some 'special' treatment.

Next, to the lab where they drew 15 (yes, 15) vials of blood.   We grabbed a quick bite in the cafeteria before moving onto the bone marrow biopsy.

The two women in the room (one tech and one pathologist) said that this was all they did all day, every day.   I was somewhat comforted by this, and they did as good of a job as possible.   This was my fourth or fifth procedure, and the first time I had actually seen all the material they harvested.   They showed me the raw material, the slides that they make it into, and the bone sample.   Nothing too remarkable, just a lot of red goo and a spongy little sprig of bone.

The final test was a chest x-ray, which took all of five minutes.   I don't know why they wanted that since I don't have any 'real' symptoms other than my whacked-out chromosomes, but I guess you don't wind up with facilities like this if you don't know what you're doing.

That is it for today, we are on at 11am with the Dr.  tomorrow morning, and currently have no idea if that is the last step of if there will be more testing to follow.

More later...  

MD Anderson Day 2 - 5/20/09

Well, the list of my oncologists grows a little longer and more distinguished.   We just met with Dr.  Kadir.   Our appointment was at 11am and we sat down with him at a little after 2pm.   I'm getting good at waiting, and at least they told us about the delay so we went to the cafeteria and ate in the meantime.

He was probably my favorite of all the doctors we have met with so far, he spent over half an hour with us reviewing my history, taking us through a basic review of the blood components and how things could go wrong, and why, in my case, they had.   Dr.  Kadir's specialty is leukemia, into which MDS falls since it is a precursor for AML.   He walked us through pretty much the same information as we discussed at KU a few weeks ago, but in a much more eloquent and personable manner.

They won't get the full details until the chromosomal analysis is returned (in about 10 days) but in summary, he said that the specific disorder they are seeing in my blood makes MDS the most likely culprit.  In my case, it would be classified as secondary MDS, meaning it was secondary to the treatment of another type of cancer.  This type has a worse prognosis than 'naturally' occurring MDS, which doesn't usually occur until 65 or 70 years of age.  

Dr.  Kadir concurred that the best course of action was to wait and see if my platelets (currently 117) continue to fall to a dangerously low level (somewhere below 100).  

At such point that that happens, or in the event of some other disorder presenting itself through continued monitoring of my labs, they would suggest a two-pronged approach.   The first would be starting one of two hypomethylating agents, Vidaza or Dacogen, which are both lower impact chemotherapy agents specifically designed to control the symptoms of MDS.   This would be to keep things in line until such time that a donor could be matched and a transplant started - my sister would be the most likely candidate, after which my parents would be checked, followed by a search through the national registry to find a good match.   At this point there is no other 'cure' for MDS other than an allogeneic (donor) transplant.

Another interesting discussion we had was regarding the scoring for MDS - known as IPSS - to indicate chances of success in treatment and overall survival rates.   The first factor is the % of blasts in your blood - blasts are the immature cells created by the bone marrow that evolve into white blood cells, red blood cells, or platelets.   My current blasts are only 3%, which is basically a non-factor.   If they saw 20% blasts, it would mean that there were too many juvenille cells that weren't 'growing up' and would be a sign of bigger problems.   So he said that would add zero points to the overall IPSS.

The second factor is the cytology.   Since my blood counts overall look good with the exception of lower than normal platelets, which also adds zero points.

Finally, the cytogenetic component looks at any chromosomal abnormalities - in my case the genetic material from the 8th and 13th chromosome being jumbled up.   That would add somewhere between .5 to 1 point to the overall score.   That, along with my overall good health would mean I fall into the 'intermediate' risk category, and the disease would likely respond well to treatment.

So where does that leave me?   Well, even though I feel great right now, something nasty is brewing in my bones.   Barring some type of miracle, I expect that the chemo / transplant approach will come into play, it is just a question of how much time until that happens, and unfortunately nobody has a good answer for that just yet.   We will know slightly more in 10 days when the full results are returned, but it won't materially change the course or the end state.  The primary question is if and when we determine that a transplant is the best option, where should it be?   Houston is a long way from home, but they do more transplants here than anywhere else.

I'm not sure how I feel about all of this yet, but I guess the positive spin is that I have the luxury of at least some time to decide how to feel and how to proceed.   Now we just have to figure out how to live as normally as possible in the meantime with the knowledge that the rug will be yanked out from under us at some point in the coming months.

We have been set free from MD Anderson and so are working on finding a way home sooner than our planned flight tomorrow afternoon, but chances of going home today look very slim.  We even kicked around the idea of renting a car, but the prospect of an 11 hour drive across Texas in the middle of the night isn't doing anything for me.

Cheers...  

MD Anderson, 2nd visit - 6/03/09

We are down in Houston now, and just finished our meeting with Dr.  Kadia.   After our last visit they set up a follow-up appointment to review the cytogenetics, which normally takes about 10 days of lab time to complete.   This is the test that would show what was happening at the chromosomal level, and is a repeat of the one performed in Kansas City that initially identified the 8;13 translocation.

We came in last night and were met by Jill's co-worker Dave, who calls on MD Anderson for Enzon.   He took us out for a great dinner, and after a short walk Jill and I turned in early for the big day.  

I headed over to have my blood drawn at 8am, so that the results would be back in time for my meeting with the Dr.  scheduled for 10:20 am.   I had a bad feeling early on when I heard the patients with the 8am appointments complaining at about 9:30.   No big surprise, we just went to the cafeteria to hang out.   Just before we did, I went to have my vitals (weight, blood pressure, temperature) taken.   The way the clinic is set up, you have to be called to have labs drawn or to see a doctor or nurse, but the room where they take vitals is an open door.   You are just expected to go in and have them taken on the day of your appointment.  As we stood in line I heard a few muffled crashing sounds, and cries of "Help!  Nurse!"

When we looked in we saw a patient whom I would have to guess was in his mid to late twenties.   He was emaciated and pale, wearing a surgical mask and thick glasses.   His eyes were rolling up to the ceiling, and he was being held just off the floor by his father and the nurse who had been recording his weight while he stood on the scale.   He had been too weak to stand on his own and collapsed, luckily with someone there to catch him.   Shortly he was laid back on a pillow on the floor and a gurney was brought around, presumably to take him off where he could be more closely monitored.   Encounters such as these never cease to disturb me and to serve as a harsh reminder of the brutality of the disease and especially the treatment.

Jill had gone to grand rounds that morning, in which the doctors discuss various cases to share ideas and insights, and to ask questions of their peers.   This meeting is open to the public at MD Anderson (and I suppose at most hospitals).   Although I have never been I imagine it would be fairly interesting.   She has a brief exchange with Dr.  Kadia in that session, and he indicated that the results of the tests suggested that we stay in 'wait and see' mode.

We finally saw the Dr.  at around twenty past two, and he expanded on what they had found.   My platelets, which I have been primarily concerened about, had risen from 117 to 126.   While this was initally somewhat encouraging, he said that a change of that size was well within the margin of error for the test.

The cytogenetics they performed didn't identify any abnormal cells in my bone marrow, which doesn't mean that they are not present, just that they are sufficiently rare that no 'mutant' cells showed up in the sample they obtained.   He assured us that the abnormal cells were still there, and said that we may have just been lucky to have identified it on the test performed in Kansas City.

Based on what they have seen so far, Dr.  Kadia felt confident in ruling out MDS (previously the leading culprit).   Apparently the specific condition I'm presenting right now is sufficiently uncommon as to not have a common name, but it would fall into a bucket known as myeloproliferative disorders.   In short, it means that the bone marrow is making cells in the wrong proportions.

That doesn't materially change what happens next, I will just need to continue to monitor my counts via monthly (at least) CBC's to see if there is any drift in the important blood markers.   At such point that a determination was made to proceed to treatment, they would give me an appropriate agent to knock back whatever kind of disease manifested itself, and proceed to a bone marrow transplant.

Right now we are planning to come back in about eight weeks for another visit with Dr.  Kadia, and at that time we'll also meet with one of the transplant doctors to start identifying options.

We asked about any predictions on timeframe, and he said there was no way to predict, but based on the low level of abnormalities in my blood right now (as evidenced by the mutant clones not showing up in the cytogenetics) he thought that whatever 'it' is will progress more slowly and it may be some time before any action needs to be taken.   I'm struggling to get used to the ambiguities - 'slowly' and 'some time' are fairly meaningless in this context as you might imagine.

One other interesting note is that there are a class of inhibitors that can, in some cases, slow the progression of the mutant cells at the root of things, but there isn't currently anything known to work in my specific case.   Dr.  Kadia mentioned another colleague, Dr.  Kim, who had studied one such inhibitor designed for melanoma, that he thought may be worth investigating.   He commited to following up with that Dr.  and to let us know the outcome.

So once again, the good news is that no immediate action need be taken, but at some point I'll have to get back in the ring.   It is hard to imagine myself once again in the shoes of the poor skinny young man too weak to stand, so for now I'll just have to do my best to focus what is within my control.

Thanks for reading, and feel free to email me with any questions.  

Quick Update - 6/5/09

Jill found an article that describes a case study that seems very similar to what we've discovered about my case thus far.   The 8p11 describes the specific part of the 8th chromosome that has gone awry.

Read more...

MD Anderson Transplant Consult - 6/29/09

So in addition to my original oncologist in Springfield, my oncologist in Kansas City, the two transplant specialists in KC and their lackeys, and my leukemia consultation Dr.  at MD Anderson, today I added one Fellow, one nurse, one Physician's Assistant, a transplant doctor, a transplant coordinator, and a financial counselor.   It does indeed take a village.

The primary reason for this visit was to have MD Anderson start the process to see if my sister would be a good match to provide the donor cells for me.   Additionally, it served as a checkpoint to get my labs refreshed to see if my counts had changed.

First things first, I had my labs done at 7am this morning at the 'fast track' lab.   It is actually quite expedient, I have never waited more than 10 minutes to get called for this one.   I then had a 9:20 appointment to review the lab results with Dr.  Kadia.   I returned at ten past nine, and was surprised to hear my name being called.   The previous record for getting called back was three hours late.

Rona took us back and asked me all the usual questions.   Any pain?  Nausea?  Falls?  

No, No, No.

Fatigue, loss of appetite, vision problems?

No!  No!  No!

The uniqueness of the early call back quickly wore off when an hour passed before anyone else came to call.   This resulted in a call from the transplant team on my mobile phone, wondering where I was.  Then we heard Dr.  Kadia discussing my case in the hall right outside of our exam room, and I assumed he was conferring with a colleague to get any last minute advice or hoping for an AHA!  moment.

The computer in the exam room is unsecured (hello HIPPAA!) so I was able to peruse my lab results before I had them read to me.   My platelet count was relatively unchanged at 125k, and aside from my eosinophils being slightly higher than two months ago, everything else was holding very steady.

We soon figured out who he was conferring with when a female Fellow came in and introduced herself.   She had a few questions about my history, and repeated similar sentiments to what Dr.  Kadia stated on our last visit.   Namely, that there was no need to take any action at this point, given that all my blood counts were at very safe levels, and not seeming to trend downward fast enough to cause any concern.   A brief physical exam later, and she excused herself and said Dr.  Kadia would be with us in a few minutes.

When he did arrive, he didn't have much new to add, simply saying that my counts looked 'great' and that he didn't think I would need to return to MD Anderson for a follow up for six months.   As he did previously, he took a lot of time to ensure we didn't have any additional questions, and then we were off to the next step.

Nurse Annie came and got us after a very short wait in the Stem Cell Transplant area (right next door to Leukemia East where all the prior action had taken place).   She repeated all of Rona's questions (literally filling out the same form) and a few minutes later left us to wait for the Physician's Assistant.

Soonja was next in line, and we covered much of the same ground I had with Dr.  Kadia initially.   When was I diagnosed, what was my treatment regimen, when was my relapse, etc.  etc.

She discussed some of the specifics of the transplant, and how the matching process would work.   After testing immediate family - my sister (no mention of parental matching this time) - she said a search would be initiated in the national registry.   We did learn that the 'average' wait time was around three months, and that if they couldn't find a suitable, willing donor in that time they usually used cord blood.   This is more readily available, but the quantity from a given sample is not always sufficient.

She talked a bit more about the transplant timing (4 months in Houston, one month of which is inpatient), and said that due to 'space concerns' they didn't generally harvest cells in advance of the transplant.   We had originally thought that in the event my sister was a good match, we could harvest (sorry, Amy!) and store her cells cryogenically so they would be on standby if and when I needed them.  

One additional detail was that for a related donor, the harvest was done via apheresis - a growth factor shot (Neupogen) is given to the donor, and then the cells are harvested the same way mine were for my previous transplant.   If an unrelated donor is needed, the actual marrow is harvested (much more invasive to the donor).   We didn't get into the reasons why, I'll put that on my list of rainy day research projects.

Once we wrapped up with Soonja, another short wait followed before the transplant doctor, Kebriaei, came in.   She hit the highlights of our conversation with Soonja, and did a brief physical exam as well.   She mentioned that there were two risk curves for post-transplant related disorders, one at around two years, and a second at around five years post transplant.   I was previously under the impression that the risk started at five years and held steady, but her comments indicated that they were more discreet.

Based on that, she seemed to feel that it was more likely that I would continue to do fine, and barring any further changes may not need a transplant.   In that vein, she said that often times post-transplant counts never returned to fully normal, but would level out at some percentage above or below (depending on the marker) the standard range.  However, she agreed that it would be a good idea to take some of the precursor steps now, specifically matching my sister and doing a preliminary registry search in the event there wasn't a sibling match.

So if you're still awake at this point, you may notice that her comments were at odds with what I had been told by the KU Med transplant team and Dr.  Kadia.   Specifically, the initial consensus was that what was going on was most certainly some type of myleoproliferative disorder with a direct causal relationship to the transplant.   She (Dr.  Kebriaei) felt that my counts were perhaps just the 'new normal.'

I'm still trying to process exactly what that means and how I feel about it, but the one conclusion that has been driven home is that despite the gallons of blood and pints of marrow I've handed over in the past six monts, everyone is just fucking guessing.   The end result is the same in that I just need to wait and see what develops, and I definitely don't think there is any malice or incompetence, it is just a very complicated situation, not like setting a broken nose.

cont...  

7/29 Continued

Our next appointment was with the coordinator, Angela, and by the time we finished with the transplant doc it was squarely lunchtime.  They told us to grab a bite to eat and return in an hour, and we were starving by that point so quick to comply.

Angela is what I would have called a PM (project manager) in my previous life, whose job it is to make sure that everyone else does their job.   As PM's do, she immediately whipped out a spriral bound presentation, walked us through a timeline, and introduced us to an org chart of the transplant team.  No revelations here, I think the intent was just to let us know that (in case we hadn't noticed) there were a whole bunch of people on the payroll.

She also is in charge of the HLA typing (used to determine my 'type' and to find out if my sister matches), so she set up my test (more blood draws) and took my sister's address so she could get a kit mailed out.

After we wrapped up with her it was time to meet with Alex, the financial counselor.  

On our first MD Anderson visit, we also met with a financial counselor (they work in something called the Business Center), who was helpful in orienting us to the process a little bit, walking us through the paperwork, and photocopying my insurance card.

Apparently they take off the kid gloves for transplant activities as there are a lot more zeros at the end of all the price tags.   After a few bad jokes diminutive Alex got to the point - showing me the expected cost of the transplant.  $260,000 for a related (sibling) donor, and $500,000 for an unrelated donor.  He also requested the insurance card, but seemed to really want to hit home the cost of the treatment, and have us sign a waiver that we had seen the figures (which were 'only an estimate, and will change with the cost of the treatments actually administered.').

My patience was thin by this point, and I was still holding out hope for making an earlier flight home, so I just thought to myself 'this is why we have insurance' and tried to hustle him through his officious little speech.  He then went on to describe the tests I would have to have in order for him to request authorization from the insurance company to cover the costs.   These included a pulmonary function test, a MUGA scan (heart function), EKG, and an additional array of blood tests to make sure I didn't have Hepatitis, HIV, or anything else.   Why I would need to do this given that I am the *recipient* of the donation is beyond me, but I've long since learned not to ask such stupid questions.   On a side note, I had all these tests before my last transplant, but forgot to have my hand stamped on the way out the door so they all need to be repeated.

After he walked through the list, I explained to him the conversations I just had with the docs, about how this was all preliminary and nobody was expecting me to have the transplant soon.   Given his admission that the shelf life of the test results (and the associated authorization) would be twelve months, it didn't seem like it would take a rocket surgeon to realize they probably were overkill.   He quickly jumped to 'well if you don't want to have the transplant, that is your call!'

I quietly restrained the urge to bludgeon him with a Swingline and took a deep breath, and started again - stating that all the conversations I had been involved in to that point centered on the HLA test, and that was all I needed authorization for.  

A few more times through this cycle and he finally decided to 'put my request on hold' and told me to 'call him if I decided I wanted to have the transplant.'

Great West had already pre-authorized us to come to MD Anderson, so when we realized that Alex was only making us dumber by having to listen to him, we got up and went downstairs to the lab and *gasp* had the HLA test done.   I can hardly wait to call him when I get the results.

That was our cue to leave, so here we sit waiting at the Houston airport.   So after some long travel days, we are left in exactly the same spot, only with a lot more M.D.'s to keep us company.   I'll keep having a CBC done every six weeks or so, and plan on coming back around the holidays to have another bone marrow biopsy and try not to hurt any financial counselors.

I've been thinking a lot about the proposed healthcare changes recently and will probably have more to add about my conversation with Alex soon.   It is very easy to imagine having that conversation if I was unfortunate enough to only have my insurance cover 80% (or less) of the cost, or worse yet, be close enough to the lifetime max to have to shoulder much of the burden.   It would literally be (and most certainly is for many every day) a choice between financial ruin for you and your family or a slow painful death.