Relapse

Diagnosis and Prep - 5/15/03

Hello again, gentle reader.  I am back to tell more of my story, although it gives me no pleasure to do so.  The past few months have seen some interesting developments, and I felt that it was time to bring you all up to speed.  I'll start chronologically for now...

Around the beginning of April, I began to have some mild chest pains.  Nothing to slow me down or cause great concern, I had just developed something of a dull ache in my chest that was fairly persistent.  I worried about it for several days, then called Nancy Sorenson (Dr.  Pendergrass' nurse) and asked if we might move up my quarterly checkup a few weeks in order to give me peace of mind.  She agreed, and I went in on 3/13 for some blood work and a chest X-Ray.

I had spent the weekend before refinishing a wood floor using a drum sander, and the R.N.  Nancy Washburn (whom I saw on 3/18 to get the results) concluded that the chest pain I felt was likely costochronditis, an inflammation of the cartilage where the ribs attach to the breastbone (sternum).  I had my doubts about her diagnosis, and she agreed that it would be prudent to do a chest CT in order to be sure.  In a dizzying display of speed and efficiency, the test was set up for the very next day.  I went up the street to the Overland Park Diagnostic Imaging Center the following afternoon, got shot up with optiray-320, and fed into the scanner.  A relatively quick and painless procedure, and I returned to work to begin waiting for the results.  

Nancy Washburn called the next day to read me the report.  One of the things I find interesting about these specialized tests (CT Scans, PET scans, etc.) is that the physician does little more than read a summary of the results.  Some other physician or technician actually reviews the films or scan and draws conclusions, then writes up a one-page report and faxes it over to your doctor.  I assume there is some value in having a professional interpretation of the results, but it is slightly annoying to have to go through a third party to simply have the report read to you.  I digress...

So she says "The report reads 'there is mediastinal adenopathy measuring 4 x 7.5 cm that is nonspecific but consistent with the history of Hodgkin's.'" That essentially meant there was a sizable mass in my chest, but that no conclusions could be drawn from it.  I felt as though my stomach climbed up into my throat, and struggled to maintain my composure.  She said that it may have been just scar tissue, but that we needed to do a PET scan just in case.  I was scheduled to go to Honduras for a week of scuba diving a few days later, and she assured me that I should go ahead and go, and that it would likely take that long to get it set up.

Jill and I went away and had a great time, but the whole week I had a dark cloud over my head, wondering what was going to happen.  I was never bothered too much until I tried to sleep, and then my mind would go into overdrive processing scenarios and possibilities.

The following week (on April Fool's Day!) I went in and had the now-familiar PET scan.  I knew it was a bad sign when the technician recognized me from my last scan.  I tried to play it cool, and told him I was just in for a routine checkup, I didn't see much advantage in spilling the beans to a stranger.  The call from Dr.  Pendergrass was possibly the most interesting and controversial part of the story, and I wish I had a better recollection of what exactly he said.  I have a fairly clear memory of him saying "the PET scan doesn't show the tissue in your chest lighting up, but we'd like to do an abdominal CT scan just in case, since you're having symptoms." The symptom was the chest pain, and I remember thinking the logic didn't make much sense, if we are concerned about my chest, why are we looking in my abdomen.  I know that he didn't mention anything else specifically, which in retrospect is causing me the most difficulty.  

So I felt somewhat better, if confused, and resigned myself to yet another scan the following week.  The abdominal scan requires you to drink two large cups full of barium - served in the waiting room of the facility - before the test starts.  I chugged it down (starving by that point, as I couldn't have anything to eat or drink before the test) and napped (it is quite comfortable inside the warm, humming machine) while waiting for the test to complete.

I went to Dr.  Pendergrass' office on 4/18 to get the results of the test, and was quite shocked when he said "the CT scan confirms the activity we saw on the PET scan in your spleen." I hadn't heard my spleen mentioned since Dr.  Massey decided that we did not need to irradiate that area as part of my radiation therapy.  I figured it was not in my best interest to have a confrontation, so I decided to bite my tongue and see where he went with it.  He explained that they still couldn't be sure it was Hodgkin's without more conclusive evidence, so the options were to wait and continue to do tests periodically, or to have the tissue biopsied with a needle to see what exactly we were dealing with.

It didn't take me long to realize that I would prefer to be skewered than spend the next three months staying up nights wondering what was going to happen.  He said it was a relatively common procedure and that it would tell them with some degree of certainty how we needed to proceed - treat with chemo, treat as an infection, etc.  

His office proceeded to set up the biopsy at St.  Joseph's (Dr.  Pendergrass works at Research) because my insurance would fully cover it there.  St.  Joseph's called me a few days before I was scheduled to go in, and let me know that I'd have to have a consultation prior to the actual outpatient procedure.  I questioned what they needed to consult me about, but ultimately again resigned to it.  On April 23rd, the nurse called to confirm the consultation, and I asked if I would need to bring anything (films, test results, etc.) and she assured me that I would just need to bring myself.  When I arrived for the consultation, I was taken in fairly quickly to see the nurse, who assured me that we could not proceed without my films.  I left, got in my car, drove to Olathe (about a 30 minute trip one way), picked up my films from the barium-serving receptionist, and drove back down to St.  Joseph's The same nurse took my films and shopped them around to several physicians, all of whom said the procedure was too risky, and that they would not perform it.  The spot is on the interior of the spleen, meaning that a needle would have to pass through the spleen, which is a highly vascular organ prone to bleeding, and possibly through my left lung.

I left quite impressed with the communication between the healthcare providers, and headed back to work to finish out the day.  The next day Dr.  Pendergrass called and hinted that there had been some miscommunication, and assured me that St.  Luke's had physicians who could perform the procedure.  I began to question why the consultation was accepted in the first place, and became a little nervous that we were now in search of 'cowboy doctors' wielding needles and devil-may-care attitudes.  I was sort of low on options at that point, so I accepted another consultation appointment on April 30th.

Dr.  Yetter is an 'interventive radiologist,' her job is to stick people with needles using radiology as a guide.  My girlfriend Jill and I went to talk to her, and she explained the whole procedure and seemed more amenable to performing it.  She mentioned some possible risks were the afore mentioned bleeding, and the possibility of a pneumothorax, meaning my lung might collapse if it was punctured by the needle.  I was not terribly concerned with the risks, it had been nearly two months since the whole ordeal began, and I was ready to find some things out.  She said she would consult with Dr.  Pendergrass, and they would decide if the benefits of moving forward outweighed the risks associated with the biopsy.

I spent the next five or six days waiting for Dr.  Yetter or Dr.  Pendergrass' office to return my phone calls seeking information of if and when and where the procedure would take place.  I finally got word from Dr.  Pendergrass' scheduler, J.C., that the procedure would be sometime on the ninth of May.  The total lack of respect I got in terms of providing me with information was less than shocking to me by that point.  The morning of the 9th we all (Jill, my Mom, and my Dad) loaded up and headed to St.  Luke's to get underway.  They drew my blood, I changed back into the familiar hospital gown and had a nurse start an IV and waited in the holding pen area.  

I had been waiting prone for about 20 minutes when Dr.  Yetter came in to review everything with me again, and see if I had any questions.  They wheeled me into the room where the procedure would take place and began to get everything ready (opening the needles, preparing the sterile drapes, etc.) I was rolled onto my right side with a long pillow underneath my back and one of the nurses (there were two in the room plus Dr.  Yetter) lathered me up with the ultrasound gel and began to move the transducer over the area where my ribs ended on the left side, seeking that small Judas of an organ.  While Dr.  Yetter left to talk to the pathologist who would be examining the tissue sample, one of the nurses tried to wheel the machine around so that I could see the screen while they were performing the biopsy.  The cord got tangled up and unplugged from the wall, instantly killing the readout on the machine.  I just hoped that they would be more careful during the procedure to maintain a steady supply of power.  We all chatted (a very natural conversation setting, I assure you) while we waited the 10 or so minutes for the ultrasound to boot back up.

Finally the machine was back online, and they confirmed the location of the spleen and the legion on it (again, the ultrasound is a very cool technology - I'm beginning to be able to make out the blurs and know what was going on) as well as the nearby large blood vessels that were at risk.  They then used a magic marker to pinpoint the spot just above my bottom rib where they would insert the needle (seems like a decidedly low-tech device, but very popular in surgical procedures) and we were on our way.

My left arm was up over my head to allow easy access, and I was told not to drop my arm into the field, because the drapes they were laying across me were 'pretty sterile.' "Would it be OK if we used really sterile ones instead?"

There were a few pricks in my side when Dr.  Yetter deadened the skin with lidocaine, and then I felt her begin to push in the needle.  Unfortunately, because of the position I was in I couldn't get a good look to appreciate the size.  Almost immediately I began to feel very warm, as if someone had cranked up the heat in the room to 90°.  Within minutes I was drenched in sweat, it was dripping off of my face onto the sheet I was laying on.  The nurses got me a wet cloth for my forehead, and explained that what I was experiencing was a vasovagal response, apparently common in young men being impaled with needles.

It was a little surreal laying on my side, watching the whole thing unfold on the screen in front of me.  Dr.  Yetter had the transducer in one hand pressed into my rib, and a needle in the other, jockeying for position a few inches inside my rib cage.  I could see the needle gleaming on ultrasound, and a dark circle about the size of a quarter clinging to the bean that is my spleen.  Occasionally she would have me stop breathing for long periods of time to hold everything in there still, and unfortunately several times it was just as I had exhaled.  I was sweating, out of breath from the multiple breath holds, and my left shoulder was completely ablaze from holding it suspended in midair for so long, but the actual needle itself was not terribly painful.

The needle has a device on the end that acts as a tissue grabber, Dr.  Yetter could pull a trigger, and there would be a loud 'click' as the grabber snaked out of the end of the needle and pulled in some tissue.  By the time she pulled the trigger, she was in deep enough that it began to hurt more.  (I didn't have any anesthetic other than the topical to deaden the skin) She fired twice, and consulted with the pathologist and his assistant (who were both now in the room to confirm that the samples she was harvesting would be big enough to provide good results).  They seemed to think the samples were adequate, but that one more couldn't hurt.  

About 45 minutes of needle time had elapsed by this point, and I was ready to jump up off the table and run screaming down the hall in my gown.  Dr.  Yetter made the final pass and dug a little deeper, trying to get a good shot at the core of the tissue.  Whatever she hit was quite painful, and she soon decided that due to the firing of the grabber and the poking around with the needle, the image on the ultrasound was too unclear for her expedition to have any degree of accuracy.

The needle was withdrawn, and I was finally able to breathe normally.  They put a medium-sized Band-Aid over the hole (very anticlimactic, if you ask me) and wheeled me in to get a chest x-ray to make sure there was not a pneumothorax.  That turned out OK, and I was rolled up to the recovery room and rolled over on my left side to put pressure on the wound to keep it from bleeding.  There was a blood pressure cuff strapped to my right arm that blew up every 15 minutes and made sleep impossible, and a pulse-ox monitor clipped onto my finger.  

I laid in the observation room for four or five hours among a colorful cast of characters while they made sure I wasn't going to flatline or anything.  At 2:30 they came in and took another chest x-ray to make sure my lung was still OK, and shortly thereafter I was put in a wheelchair and wheeled out into the street.  One of my least favorite parts of being in the hospital is the rule that you cannot leave on your own two feet, no matter how capable of walking you are.

I was told that the results would be available by Monday, so I returned home and spent an anxious weekend waiting to hear the news.  Monday I called the nurse (my pal Nancy Sorensen) to light a fire under her, and she said they should be available by the end of the day.  I called again on Tuesday to be told that they would need to run some 'special stains' before they could release the results.  She didn't think they would be available until 'around the time of my appointment' on Wednesday.  I immediately smelled a rat, but asked her to call me anyway if she heard anything before then.

Wednesday afternoon (5/14, one year to the day from when I woke up in the ICU following my biopsy) I had lunch with my boss Max and then headed over to see Dr.  Pendergrass.  Very skillful at delivering bad news, he quickly confirmed what I had suspected all along.  He said that although the tissue samples the pathologist studied were too small to conclusively say it was Hodgkin's disease, the results that they did get coupled with my history left little doubt that it was back.  He explained that the treatment likely didn't completely kill the disease, but merely knocked it back to a point where it was under the radar of the PET scan and other tests.  He also felt that it was probably not confined to my spleen, but that there was a strong chance it was more systemic, and just hadn't represented anywhere else yet.

The options he presented were to wait and see, and continue to do tests until we could conclusively see that indeed it was Hodgkin's and that it was getting progressively worse.  The danger in that is that the more advanced the disease is, the more aggressive the treatment must be to combat it.  Another option was to remove the spleen entirely, hoping that the disease was isolated there, and then repeat option one.  Again, the risk is that the tissue in my chest is affected as well, and it would just be a matter of time before it advanced to the point it would be clearly visible.  The final option, and the one he recommended (*gulp*) was to proceed with treatment.

Just as with the initial bout with Hodgkin's, the treatment for relapse seems to be fairly standardized and well documented.  The procedure is known as a stem cell transplant, and it goes a little something like this.  Initially, you get a dose of chemotherapy (a different mix than the ABVD I had last time, this one with the clever acronym of BEAC) to knock back the disease a little bit and gauge your reaction to the drugs.  Then they harvest white blood cells (your own, ideally, assuming the bone marrow is not involved) and put them in cold storage, so that you can be your own stem cell donor.  If you cannot be a self donor, the procedure becomes more risky, both because the chemo treatment has to be much more aggressive, and because there is a possibility your own immune system will reject the donor cells, essentially waging war on itself.  Once they have the cells, they drop chemo bombs on you in the hope of eradicating the disease (and unfortunately lots of other things inside your body), then reload you with the white cells harvested earlier.  

So today I begin the process of discussing and preparing for the stem cell transplant.  I will talk to the specialist in charge later this afternoon, but as I understand the first step will be to undergo lots of tests to make sure I'm in OK shape to tolerate the next chemo blast, and don't have a lot of negative side effects from the first round.  That means heart function tests, lung function tests, kidney function tests, as well as the mother all procedures, the bone marrow biopsy.

Who needs a drink?  

Update - 5/16/03

Went to see Dr.  Joseph McGuirk yesterday at 2pm to get the low down on what will now be know as the ASCT (Autologous Stem Cell Transplant - try saying that three times fast).  Jill and I arrived in the waiting room, and when we signed in we had to indicate if we had a cough, sniffle, sneeze, or any other cold symptom before they would let us beyond the waiting room.  People coming in and out have nearly no immunity, so they have to be really careful about what gets into the 'clean' areas.

We waited for nearly an hour before being taken back to his office, and he unleashed a punishing flood of facts for about 20 minutes before gasping for breath and asking "Any Questions?"

The short version is it is pretty much as I expected after speaking to Dr.  Pendergrass.  I will have a series of tests soon, then have a port installed in my chest (the pop-top to my veins), and meet with a social worker and a psychologist - presumably to make sure I'm stable enough to undergo the treatment.  That is possibly what I'm most worried about at this point.

Once all the 'housekeeping' is out of the way, I'll get a one-day chemo blast.  For the next 7 to 10 days I'll get shots similar to the neulasta designed to stimulate my bone marrow and push the stem cells (the stem cells are the cells that generate all blood elements such as white blood cells, red blood cells, and platelets) into the blood stream so they can be more easily harvested.  When they feel I have stem cells sufficient in my bloodstream, I'll be hooked up to a big pump that pulls out the stem cells and returns the blood, they harvest them until they have enough to resupply me for the transplant.

The autologous part is in my favor, he said the procedure has a 50% success rate overall when there is a self-donor situation, if that won't work because there is disease in my bone marrow, I'll have to locate another potential donor, which increases the complexity and risk of the procedure significantly.

I'm then given a little time to recuperate (a week or so) before the BEAC chemo winter begins.  It happens over a five day period, and is 10-15 times more powerful than the doses I received previously.  They do this because there is a linear relationship between the strength of the doses and the number of cancer cells killed.  So the goal is to wipe out as much as possible (including all of your immune system) during that five day period.  Then after a two day break, they'll pump back my stem cells so I can begin regenerating white and red blood cells, platelets, etc.

I'll be able to do most of the treatment on an outpatient basis, with the exception of the five day stretch when I'll likely be hospitalized and hopped up on painkillers, antibiotics, etc.  Possibly the most troubling part of the whole thing is that my immune system will be completely leveled, and I'll have to relearn all of my immunity (get childhood vaccinations again, etc.) before I can lead a 'normal' life.  That means no pets, no plants, no fresh fruits and vegetables, no airplanes, no handshakes with strangers, etc., etc.

More to come regarding tests, the port, and the thrilling psychological exam.  

Update - 5/24/03

The first part of last week was truly the calm before the storm, reminiscent of the end of summer back when I was in school.  I suddenly realized that the quantity of 'free' time I had was shockingly finite, and that I would soon be living by an entirely set of rules.  New diet, (sort of) new appearance, a return of the nausea, a reintroduction of countless medications into my system and schedule -- all of this is coming crashing down on my in such a short period of time.  I spent the early part of the week trying to tie up loose ends and make arrangements, as well as trying to squeeze in many meals out, movies, etc.  as possible.

One of the primary things I've done is try to get my home-bunker ready, I recently bought a Play Station 2, ordered subscriptions to several magazines, bought several books, and signed up for DSL and set up a wireless network in the house.  There is a strong chance that I will never need to leave the house for any reason or speak to anyone outside of my immediate circle again...  I read in the onion that the majority of human interaction now occurs in online product reviews.

So on Wednesday of last week is when everything began, and I started the tests to make sure I would be up to snuff to handle the treatments.  Some of them were new and sort of interesting, others quite mundane by this point.  You know you're in trouble when a PET scan seems very routine, and you begin to make friends with the tech running the test.  Here is the lowdown (or is that downlow?) on the tests.

On Wednesday morning, I met with Linda Huber, whose job it was to conduct my psychological interview.  I had to go pick up my CT films before the meeting, and got there about a half hour early.  I checked in with the receptionist, and the fun began right away.  As far as I could tell, her role is to be something of a counselor for me, but I could tell by the questions she was asking that she was putting together some sort of a personality profile.  Initially she asked me to begin from the beginning and tell the story of how I came to be considering the stem cell transplant.  I told of Dr.  O'Connell, Dr.  Bentley, the ICU experience, etc., etc., pausing frequently to answer "and how did that make you feel?"

She asked about my family background, childhood, and so on, all the while scribbling copious notes on a legal pad.  

She handed me some 'guided imagery' tapes to listen to (haven't gotten to that one yet) and told me she could provide me with some 'cognitive restructuring' techniques in order to make the treatment seem less painful and difficult.  Don't get me wrong - I believe in a positive attitude and all, but my limited background in psychology (minor from MU) makes me think that rationally expecting pain and difficulty based on past experience is quite different from ungrounded and irrational fear.  I told her that the bone marrow biopsy was by far the most painful part of my diagnosis and treatment, and she tried to restructure my cognition as follows:

"Do you think it will be as difficult this time?"

"Well, yes, I imagine it will be just as painful as before."

"Oh no, we are professionals here - the doctors do this procedure all the time."

"Mm hm.  I understand your team spirit, but I imagine the last person who performed the procedure wasn't doing it for the first time.  It is just inherently a painful thing."

(In an almost-cocky tone)"We will just have to see after the procedure - but I think you'll find it to be a much better experience."

"Right, right."

For the final test, the a door swung shut so that I was sitting completely inside the chamber - it reminded me of one of those booths you see on a game show where the close someone inside a booth and money swirls around them and they frantically try to grab it.  Unfortunately, there was no money, I just had to pant into the tube to test my overall capacity.

Next step was the cardiac center, where they performed an EKG.  This was a shockingly simple test, I was taken into a room where I laid on a table and had seven electrodes attached to my chest and one to each ankle (reason unknown).  The tech clipped small jumper cables on each one, and took a readout for less than a minute.  She then handed me a printout showing my p, q, r, s, and t waves.  I was unable to decipher the results, but a physician scribbled some notes on it, and apparently I have bradycardia.  From what I can tell, this means I have a resting heartrate of 60 beats per minute or less.  It is not likely a problem, it just means that I am young and in fairly good shape.

I then headed back to radiology to have a panorex of the jaw - essentially an x-ray like you get at the dentist.  I'm not sure why they did this one, and the techs didn't seem to know either.  That will have to be a question for the docs next week.  I sat in a chair and bit down on a small plastic guard, and a device swung around from one side of my face to the other.

After the panorex, I had a two hour break, so I went out for lunch with Jill, and she accompanied me to the next (and most fun) round of tests.  We went back to the BMT (Blood and Marrow Transplant) clinic where I initially met with Dr.  McGuirk.  They drew eight 10cc vials of blood for various tests, took my vitals, and performed some other various tests.

All the while, a loud and piercing wail could be heard through a closed door.  A patient was screaming at the top of their lungs "NOOOOOO - OOOOOWWWWWWWW!!!  NOOOOOOOOO PLEASSSEEEEEEEEEEEEEE!!!" and variations thereof for about 15 minutes.  Candy, my less-than-polished nurse commented that the patient was having a bone marrow biopsy.  Very comforting.  

After a few minutes of waiting, I was taken back into a private room, where I laid face down with my pants pulled down slightly.  The third doc in the transplant program (whose name escapes me right now) came in to perform the bone marrow biopsy.  He cleaned the area around the small bony bump on the left side below the small of my back with betadine, then applied local anesthetic to the area.  There was a small sharp sting when that needle went in, and a little pressure as he deadened the skin.  

The next step was the bone marrow aspirate.  A needle is stabbed through the skin and bone, and liquid bone marrow is pumped out through the needle.  This part was quite painful, with very sharp pain as the marrow was pulled out.  I was gripping the sides of the table, and gritting my teeth until he pulled the needle out.  

Next was the actual bone biopsy, in which a different needle is inserted and ground back and forth until a sample of bone is captured.  This was an order of magnitude more painful than the aspirate, and Jill, who was standing next to me watching the whole thing, nearly fainted and had to sit down.  As he rocked the needle back and forth, I started shaking and every muscle in my body was as tense as it could be.  He worked on it for about 30-45 seconds (felt like 30 minutes) before pulling the needle out and consulting with the pathologist in the room.  He said something to the effect of 'we used the wrong needle, we'll have to try that one again.' Apparently he used a new kit and was unable to extract the bone sample from it.

He asked if I wanted more anesthetic, and I declined, just asking for him to get it over with.  The anesthetic really doesn't do much, because the real pain starts when the needle goes in the bone, and that can't be deadened.  He started over with a different kit, and took another sample.

I was quite drenched in sweat, but was finally finished and cleaned up and headed home.  Here are some pictures of the biopsy procedure, please remember that my ass is not nearly this fat.  Here are some other pictures of the needle, including a disturbing video of what happens.

The next day was the now-familiar PET scan (my fourth) at 9 in the morning.  I arrived and John, the friendly PET tech started an IV before informing the that the doses of radioactive glucose they inject had not arrived from St.  Louis yet.  I wondered about his timing, and sat in the small room, listening to his periodic calls to the truck driver carrying the payload.  "You're in the Grandview Triangle?" I closed my eyes and tried to sleep.

45 minutes later, the driver finally arrived, but delivered the samples to the wrong building across the street.  John and another tech had to go over and carry the 4 lead boxes over (weighing in at 70 lbs.  each) before he could shoot me up before the test.  His hands were shaking so badly from carrying the heavy boxes it is a wonder he didn't stab me, but the glucose went in without incident.

I then had to wait silently in the room with the lights off (even the movement of your eyes while reading is considered too much) before getting fed into the machine.  Once on the table, I fell quite asleep during the hour-long scan despite the discomfort from my bone marrow biopsy site.

Whew.  That's it for now.  Next week is the port placement and the mobilization (cytoxin) chemo.  Let me know if you have any questions about the tests, etc.  

Update - 5/28

Yesterday was my consent visit - in which I give the clinic full legal right to poison me within an inch of my life.  I arrived at the clinic before 2pm, and waited in the waiting room for about 15 minutes and for another hour once taken back into the infusion area.  Apparently there was another consent before mine, and they like to take their time with those.  I have become acutely aware of time spent waiting in doctor's offices and elsewhere, perhaps I should start to keep a log and submit a bill at the end of my treatment to offset some of the costs...

The doc I talked to was the same one who performed my bone marrow biopsy - his name is Dr.  Abbott - and it was much better to meet with him sitting upright, he with no sharp implements.  I have to say (my apologies if you're reading this, doc) that he looks about 22 years old.  I cannot resist the temptation to compare him to Doogie Howser (no doubt an original thought) and think of all the crazy antics he must go through to convince people that he is indeed capable of providing good medical care.  From what I can tell he is wicked smart, but as he is recently out of medical school, he could use a little work on his bedside manner.

The purpose of the visit was for him to explain the potential short and long term side effects that were a possibility, as well as review the results from my workup last week.  All the tests came back quite well - he went so far as to say I was the ideal candidate to get the transplant (hooray?).  Normal heart function, my lung capacity is in the 85th percentile, and perhaps the most important news is that my bone marrow came back negative, meaning that I will be able to serve as my own donor.

The rest of the discussion was fairly predictable, he just went into more detail than did Dr.  McGuirk on my initial office visit.  He walked through each of the drugs I will be receiving and their potential side effects, which are mostly similar to the ABVD regimen I had previously, with greater intensity.  The drugs (more detail on them later) essentially attack cell replication, killing anything that replicates or grows quickly.  He mentioned that I will be getting Neupogen after my mobilization chemo tomorrow to stimulate the production of stem cells and get them moving through my blood.  As you might recall, Neupogen is what I took previously during chemo (with some unpleasant side effects).  Unfortunately, during this phase my dose will be doubled.

Other potential side effects mentioned were cardiac arrest (rare, and more common among those with heart trouble), lung scarring and fibrosis (this was more likely with the Bleomycin I had previously), sterility (approximately 85% of transplant patients are sterile afterwards - more women than men), and an increased risk of Chronic Lymphocitic Leukemia (CLL).  He stated that 5-10% of patients develop CLL within 5-7 years after treatment due to the damage done to the stem cells during the apheresis, freezing, and reintroduction of the cells into the body.

He was understandably frank during the discussion, which I appreciated, in order to make sure I was aware of all the risks.  However, with no real alternatives, I will be staying the transplant course.

I'm NPO (what does that stand for?) which means I can't eat or drink anything in preparation for the installation of my port in a few hours.  Then tomorrow morning around this time (9am) I'll have the first chemo.

Keep writing, and let me know if you have any questions.  

Update - 5/29

Had the port installed today - pretty painless procedure overall, I remained awake through the whole thing.  They gave me some mild sedatives through an IV, but I was talking to the docs about the procedure the whole time.  My old friend Dr.  Yetter was the one installing the port, with help from another doctor, Dr.  Stiles.  It only took about 40 minutes after all the prep work, etc.  was completed.  They washed the area off with alcohol, covered it with betadine, and covered the area with sterile drapes.  I had to lean my head to the left side, and they numbed the skin with some lidocane.

They made a small puncture above my collarbone where the vein is actually accessed, then tunneled under the skin to an area near the middle of my chest where the tube comes out.  It actually has three access points, red white and blue themed, just in time for the fourth of July.

Update - 6/2

That took a little longer than I expected...

I spent the Friday through today in sort of a half-awake state, numbed by the Atavan and Benadryl, and plagued with fairly persistent nausea.  I turned the pump in Saturday morning, and felt decent on Saturday afternoon, but the queasiness never quite left me behind.  I started taking Atavan orally every four or five hours (ok, maybe every two hours) on Saturday, and that seemed to be doing the trick.  Starting Sunday morning I turned a corner, and began to feel quite sick.  I was supposed to be drinking 80oz of water a day in order to protect my bladder and kidneys from the harmful effects of the Cytoxan, but on Sunday for every 10 oz I would drink I would throw up 20 oz.

I went in this morning to have my first growth factor shot, and noticed during my daily vitals check that I lost 10 pounds over two days.  Write for details if you'd like to try this amazing diet!  

Shannon the nurse decided to intervene, and pumped in a liter of fluid (along with some more Benadryl) through my novastar over the course of a couple hours.  Feeling much better now, I've been able to hold down a little bit of food this morning.  They also gave me another nausea drug to try - Zofran - we'll see if it has more of an impact.  In addition to all of those, I've started a series of prophylactic antibiotics to keep me from coming down with any bizarre infections over the next few weeks - Avelox, Diflucan, and Acyclovir.  These haven't been too hard on my stomach yet, and I've been able to keep them down despite all the two-way traffic.

My white blood counts have dropped to about half their normal level, which is not quite as low as I thought they would have been.  According to the docs, they will continue to fall until nearly bottoming out, and at some point the neupogen shots I started today will begin to do their job and stimulate the production of stem cells, white and red cells, and platelets.  

I think I'll watch the great escape this afternoon, but will most likely just drift in and out of sleep.  I don't seem to have the energy or concentration to do much.

Another interesting point about today - I wore the mask when going into the clinic.  They gave me three of them on Saturday, and told me I'd need them when my white counts dropped.  If you want to see some bizarre reactions among Joe Public, just strap on a surgical mask and walk around.  

Update - 6/5

Feeling much better today, although I'm not sure why.  I had a CBC yesterday as part of my oh-so-frequent office visits, and my white blood counts were nearly normal.  I was under the expectation that they would be cratering by now from the chemo, and that I would need to be quite careful of infection, etc.  They dropped a little last week, but never as low as they had been previously with chemo, and now back to almost normal.  So either the neupogen shots I've been taking are working like gangbusters, or there is something else going on.

Something I never counted on was how scientific and de-humanizing the whole process would be.  Everything is metered and measured and dosed, and there is very little (well, relatively little) flexibility in the schedule.  Two or three times a week I go to the clinic to have my blood drawn and the dressing on my port changed, which takes at least two hours by the time they get the results, etc.  Every day at 10am I give myself two shots.  I'm on five different medications to fight infections and nausea, which are taken twice daily.  I have to have the port lines flushed with heparin daily.  The most difficult to adjust to, however, is the need to measure all of my fluid intake and output, and have this information reviewed by a nurse each time I get to the clinic.  If the quantity of output is too high in relation to the input, I get fluids via IV.  If it is out of balance too much the other way, I take a Lasix that kicks the kidneys into high gear.  I'm also supposed to take my temperature several times daily, but that one has slipped somewhat.

Another thing I've noticed is wide variations in my energy level.  I'll feel great one minute and think of a million things I want to do, but then will tire out quickly and need a nap before I can do much of anything.  This morning I got up before 6am completely wired, and walked two miles on the treadmill.  I had a big breakfast and made a list of everything I wanted to do today, and by 8am I was completely exhausted and had to sleep for two hours before I could do anything else.

I'll let you know about the harvest, I've got a call out to the nurse.  My counts are currently twice what they told me they would need to be in order to harvest the stem cells, hence my confusion.  More later...  

Update - 6/8

Turns out my elevated white count was just a temporary thing.  I went from having a count of 4.0 (normal is 4-8) on Wednesday to having a count of .2 by Friday morning.  That means that I had almost no defense against infection, so I had to be very careful all weekend about eating, drinking, contact with other humans, etc.  I didn't really feel much different, just a little anxious to learn that any slip-ups would likely land me in the ER again to get some heavy duty antibiotics.

I spent most of the day on Saturday playing the Matrix on PS2, that has turned out to be a great way to pass the time.  I doesn't require as much concentration or energy as reading or writing or playing guitar, and it is distracting enough to keep my mind off the bone pain.  Starting on Thursday, I started to get a pretty significant amount of pain in my lower back from the Neupogen shots I've been taking every day.  Unfortunately it has continued to get worse the more I take, and I've still got a few more days worth of shots before the harvest.

I've got some pain medication but I'm a little reluctant to take it, as I had a lot of side effects from taking it last time.  Once you start piling on with the pills, it gets really difficult to keep everything in balance and the side effects in check.  

I went in to the hospital today for my routine CBC, and my white counts had risen back up to 1.6.  Anything below 1 is considered neutropenic, when you are at the greatest risk.  Unfortunately my platelets were nearly completely wiped out, meaning that a bump into the coffee table could have disastrous side effects since my blood could not clot.  I got a transfusion of platelets to try to boost them back up.  I got to the hospital at 8am in hopes I could get done early, but it was 11:30 by the time the platelets arrived, so I had a nice relaxing 4-hour wait in the infusion room.  At least they had a little TV, I watched the men's final for the French Open on NBC.  I find it hilarious that NBC made such a huge investment in airing the tournament, and failed to spring for an interpreter so the viewers would know what the winners said.  Each winner and the runner-up gave a short speech in a few different languages (polite enough to speak French to the crowd even if it was not their native tongue) and the announcers would sit silent for 60 seconds then say something inane like 'He's talking about his mother.' Then to make it that much worse, Bud Collins comes along and says 'Champion' in Spanish before asking several questions in English that clearly confused them.

Anyway, no real side effects from the transfusion, I just came home afterward and relaxed.  

Back in at 8am tomorrow to check counts again and get my Neupogen shots.  More later...  

Update - 6/10

I'm writing this from a bed in 5 East at St.  Lukes.  Much to my surprise, the apheresis began today.

I went in yesterday morning to have counts checked, etc., and my white cell count had shot up like Livin' Da Vida Loca to 10.9.  Not wanting to waste any time, they went ahead and scheduled the harvest.  

I arrived at 6:30 this morning, and had another CBC and a CD-34 to check the count of stem cells.  They then hooked me up to a big machine that looks like the WOPR from War Games, complete with bleep-blop dials and flashing lights.  One tube goes into the red port on my novastar port, and the other one into the blue.  The blood gets sucked out and fed into the machine, where it goes into a big centrifuge and gets separated into the different elements.  The stem cells get drawn into a little bag, tinged a little red as some red blood cells sneak in there too.  The goal is to get 5 million of them by the time we're through, and they expected that I'll be done by 11:30 or so.

My CD-34 count was 100 this morning, they said they would perform the harvest anywhere above 10.  Apparently that translates into producing roughly 10 million cells over the course of 4 hours, or double the number they stated they would need.  The lab guy said that anything above what I actually needed was 'gravy' and would help me recover more quickly after the transfusion.

When they take the stem cells out they spin them down to remove the excess fluid, so they have a tightly packed ball of cells.  These cells are stored in bags at -284°F until they need to thaw them out to give them back.

There are not really any side effects yet, they warned that I might get a little dizzy or get a funny taste in my mouth from the anticoagulant.  Right now I'm just a little tired from getting up so early this morning.  

After they finish on the machine they said I'll likely need another round of platelets, as the processing of the blood through the machine tends to make them drop.

---

I waited around until 3:30 but finally got the results of the CD-34.  They said they collected betweeen 11 and 13 million stem cells - more than twice what they needed.  Not sure I'll get them all back, but we shall see.  I'm going in tomorrow morning to talk to the regular nurses, I'll find out more about my schedule for the next week then.  

Update - 6/11

Quick visit to the office this morning, where they told me the nurse that asked me to come in had taken the day off.  We were getting ready to leave when another nurse said that Dr.  McGuirk wanted to speak with me.  He said they wanted to remain on the initial schedule and start my high-dose chemo on the 18th.  He also said that he had discussed my case with the other doctors (the three doctors apparently have conferences twice per week to review each patient's status, needs, etc.) and wanted to suggest a different regimen of chemo than the BEAC regimen initially suggested.

He said that in reviewing the literature, he had not been able to find any advantages of the BEAC routine over another one called CBV.  They are much the same, with the exception of CBV having a higher dose of BCNU (the 'B' in BEAC) and not using Cytoxan (which I had for mobilization chemo).  The other two drugs used are Etoposide and Cycolphosphamide.  The BCNU is toxic (obviously) and can cause scarring of lung tissue, but is not as much of a risk as the Bleomycin I had as part of my last chemo.  

I should have left well enough alone and just said "sounds great, Doc!" but I had to ask why.  He said that the last two patients that the BMT clinic in KC had treated for Hodgkin's with the BEAC had relapsed, and that he had had better results using the CBV regimen he suggested for me in his previous experience at Yale and Sloan-Kettering.  The primary reason is again the linear relationship between the strength of the dose and the number of cancer cells killed, and the CBV has a 66% stronger dose of BCNU.

So essentially the same, same basic schedule, same set of side effects, etc.  Despite the gloomy recent history, I was encouraged to know that he and the other doctors had at least been giving it some thought and had good reason to suggest the switch.

Now I start to wait, and enjoy my last week before the assault begins.  Thanks for all the emails and calls, it is great to hear from all of you.  More soon...  

Update - 6/13

Not much has changed since the last post, I've been feeling pretty good and trying to enjoy my last few days of freedom before next Wednesday.  I worked out in the yard for a while yesterday, it felt good to get out of the house, but my energy didn't hold up very long.

The other development is that my hair started falling out in handfuls the day before yesterday.  I'm getting ready to shave it all off, as it is quite annoying to have it all over my face and neck, getting in my food, etc.  Even though I knew it was going to happen eventually, it is a rather unpleasant milestone.  Going bald doesn't bother me so much, but the loss of eyebrows and eyelashes that will soon follow marks a great stride away from normalcy.  

Update - 6/17

Good morning.  Tomorrow is the big day, I head in at 9am to start the BCNU, and begin five days of fun.  I'll be in the outpatient clinic Wednesday through Friday, then in the BMT clinic in the hospital on Saturday and Sunday, since there are no docs working on weekends.  Getting ready to head to blockbuster this afternoon to stock up on movies - watching DVDs on my laptop is a great way to pass the long days and distract me.  Let me know if you have any great movie suggestions.

Yesterday I went completely bald.  Friday I shaved off most of my hair, cut it down to about 1/16th of an inch.  It continued to fall out so quickly that I had to get rid of it.  Every time I would touch my head my hand would come away covered in small hairs.  It is much like sand when you come back from the beach - it has a tendency to turn up everywhere.  Shaving it was actually pretty difficult, because big clumps would fall out and clog up the blades before they could actually cut anything.  I finally got it all off, and continue to be amazed at just how soft a newly bald head is.

One interesting thing I've noticed is a vague feeling of guilt as I talk to people who supported me through my first struggle, especially fellow cancer survivors.  It is fairly difficult to explain, and probably fairly difficult to understand.  Lately when I talk to people who hear the news of my relapse, I feel like I've let them down after their earlier support.  Having heard things like "I knew you'd beat it," or "I'm so proud of you," etc., etc.  and then delivering the news that I didn't in fact 'beat it' introduces an odd dynamic.  Don't get me wrong, I'm not losing any sleep over it, but something I've noticed.  That feeling is somewhat exacerbated when talking to survivors.  After you achieve remission (speaking for myself here, although I imagine this is a fairly common thought process) you begin to construct a wall of confidence to ward off worries of relapse.  Hearing fellow survivors relay stories of relapse must surely show cracks in that wall.  Anyway...

Just got a huge delivery of water - since I'll be on the hook for drinking about 80oz per day, I figured it would be better to go with the big 5-gallon jugs rather than the smaller bottles I had been drinking.  50 gallons are now piled up here - I'll be interested to see how long that supply lasts.  

I'll probably write more tomorrow during treatment, until then...