Details of the Actual Valley

I get very emotional when I talk to people about my experience of the stem cell transplant.  As I said in my last post, I liken it to the valley of the shadow of death in the 23^rd Psalm.  And I extend it to the line, Thy Rod and Thy Staff, they comfort me.  I don’t know who the Rod is (the chief of police? my wife?), but the staff is certainly the medical staff here at Beth Israel.  They comforted me in the depths of the valley, and they got me through it.  I can’t express how grateful I am.  And I was incredibly lucky.  Much worse things could have happened to me than what did happen.  I am now bouncing out, and what I went through is becoming an increasingly dim memory.  So I need to dredge up what happened to make sure I don’t lose track of the details.

Ultimately, it was an experiential event.  They give you a notebook that describes what may happen to you during an SCT.  Lots of nasty things.  But there is an intellectual understanding of what may happen.  That is different from experiencing the real thing in person.  I was literally at death’s door.  I realized I had very few resources left to call upon.  I got through it, through no fault of my own.  It is very humiliating to realize how close the outcome was.  There are lots of posters around the hospital about Grateful Nation, as the BIDMC is the hospital of the Red Sox.  Well, there is certainly one Grateful Individual or Grateful Family for them being my saviors during my ordeal.

So what actually happened?  I was doing really well.  I’d posted on Sunday 11/4 (day 5) about my blood counts.  Interesting numbers, but I was still feeling pretty good, and I had enough energy to create the post.  Sunday featured a long list of visitors, and we had a very competitive game of hearts.  Here are the participants, except for Barbie, who is always behind the camera:

 Actually, that is everybody imitating Bridget, who when she is concentrating on figuring out what to do, puts her tongue out on her upper lip.  Here are the same players, with more normal expressions:

Bridget, who is just learning hearts, led for the first half of the game.  She didn’t really take it that hard when Brian ran away with the game after that.  I came in 4^th or 5^th, but I was physically feeling fine.  Everybody left as it was getting dark, and Barbie stayed over in JP with Brian & Bridget.  She came back in Monday morning and all was well.

Two of the visitors on Sunday had connections to stage 4 cancers.  Those with stage 4 of any cancer are dealing with metastasized cancers.  They have only the prospect of repetitive chemo and radiation treatments with little prospect of actual remission.  Elizabeth Beck’s father is dealing with stage 4 colon cancer.  There are at least 20 metastases in his liver.  George Nesgos, a friend from Iran, also visited on Sunday.  He is dealing with Stage 4 prostate cancer, and its aftereffects.  Currently he is dealing with metastases in his tibia, sacroiliac, and lower back.  A long row to hoe.  One of the many things that I am grateful for is the fact that I have the prospect of several years of remission of Multiple Myeloma after my SCT.  So I have a bright light and full rainbow at the end of the tunnel.  I am incredibly lucky.

Here I am, probably sometime on Monday, getting the dressing on my sub-clavian line changed. 

Note the extreme precautions taken around the line.  I was in a mask, so my breath would not infect the line.  (Would that be a halitosis infection?)  Bridget didn’t just wear rubber gloves.  These were sterile gloves that came out of a separately wrapped packet that insured sterility.  Two sets of antiseptic swabs were used to sterilize the skin around the line.  Then a carefully wrapped dressing covered everything over.  Clearly these lines are incredibly useful, but potentially dangerous.  What they administer through the line goes directly to the superior vena cava, which is immediately above the heart.  If any germ gets in there, it is BIG trouble.  I am surprised Bridget herself was not wearing a mask.  Note I am still in “civilian clothes”.  At some point later in the week, Doctor Joyce said it was time for me to get into a hospital johnnie and pretend I was a patient.  That meant they were getting serious.  I’ve been in a johnnie ever since, and I am glad I have been.  So is my laundress.

As things progressed, I got progressively more tired, but nothing dramatic happened.  Barbie went home to do Monday lessons and the Monday chorus rehearsal.  She came back in on Tuesday, staying over in JP Tuesday night. 

They put me on fluids and standard antibiotics.  After all, if your immune system is dying away, someone needs to protect the store.  The net result is you need to keep your feet up as much as possible, as foot swelling is a natural consequence.

Nothing much went on Tuesday or Wednesday.  The plan was for Barbie to return to Stow for Wednesday lessons and come in Thursday after teaching Thursday morning lessons.  Wednesday morning we had a very competitive game of pounce, and Barbie came in second.  That morning I had a relatively normal breakfast of scrambled eggs and toast.  I also had some powder mixed in orange juice to simulate my appetite.  So she left at noon on Wednesday, thinking all was proceeding nicely. 

Well, it didn’t take long for things to start happening.  I had ordered lunch, thinking I would have a normal appetite.  About half an hour after Barbie left, my tummy started rumbling.  Suddenly, I started salivating like crazy.  It was clear I needed to get to the john, as something was about to erupt.  The appetite-stimulating power in orange juice came up from deep within my gut.  It seemed that my stomach was emptied early of all its contents, but the heaves kept on, with the orange juice compound coming up from ever deeper parts of my gut.  I sweated.  My eyes watered.  It was a total body experience.  Eventually it was over.  I rinsed out my mouth as well as possible, rang for the nurse and went to bed.  I don’t remember the exact sequence of events, but the rest of Wednesday was spent in bed, alternately shivering or sweating.  Barbie cancelled Wednesday lessons and came back in to help however she could.

Here is a picture of the patient completely covered up.  The blanket is a Women’s Beanpot Tourney blanket, courtesy of Bridget who was the team doctor for the Northeastern Women’s hockey team.  It is a sweatshirt-type blanket, which is perfect for in the hospital.  It is easily washable, yet it is nice and warm.  All the nurses say it is perfect.

The patient likes it because it is warm, and much easier to keep straight on the bed than the paper thin blankets the hospital provides.  You always need to have at least 2 of those, and when you get out of bed to urinate, they get all tangled up.

By 4 PM Wednesday I had a fever of 102.  The medical team sprang into action.  They took a blood sample to culture.  The lab does something to cause any bacteria in the blood to grow into colonies.  Soon they can tell the general class of the bacteria causing the infection.  Eventually they can tell the exact species.  The medical team also searched around for possible sources of the infection and possible antidotes.  There were 3 suspect areas in my case: my mouth, my bottom, and the sub-clavian line.  Neither my mouth nor my bottom had open lesions.  The sub-clavian line is always a suspect, and even if it is not the source of the infection, it can act as a harboring place for the infection.  So the line had to come out.  Here is Randy Goldberg removing the stitches so the line can be removed:

Note I am still in my flannel shirt (and corduroys, but you can’t see them), so the transition to johnnies must have happened sometime after this.  At any rate, the line came out.  It was replaced by two eternal lines on my left hand.  Much less convenient, but much less dangerous.

So the normal drill was to lie in bed all covered up.  I soon discovered that the temperature of the room affected how I felt.  Raising the thermostat to 75-80 made it much easier to maintain my internal temperature.  But it was still total body quaking because I was cold, or sweating because I was hot.  The latter was easier because I could throw off the covers in response.  But that could lead back to the shivering.  A delicate balance.  Intersperse that with having to urinate about every two hours and liquid diarrhea on about the same schedule.  Messy and debilitating.  Meals were not on the agenda any more.  Simply getting washed up and into a new johnnie was about all I could accomplish in the day.  That got broken down into discrete tasks, so rests could happen in between.  When I really washed my body, dried off, and got into clean duds, I would end up breathing hard.  Exhaustion was always close at hand.

Here is some cadaver in a johnnie zonking out:

Periodically, they come to take your vital signs, and the easiest place to take your blood pressure is in the bed.  Then it is real easy to keep your feet up and take a few Z’s.

Infectious disease specialists were called in.  Dr Hollenbeck and Dr Panther interviewed me, and they were especially interested in my time abroad.  Exactly what type of malaria did I have in Nigeria?  What were we exposed to in the trip back to Nigeria in 2008?  What were we exposed to in Nepal earlier this year?  I did not have good answers for many of the questions, so I am afraid they didn’t have much to go on.

They changed the antibiotic they were giving me.  When my white blood cell counts got low they had put me on Ciprofloxin, the same drug we took with us to Nepal to combat any stomach bugs we might have caught there.  We didn’t sick, so we didn’t use it.  Well, the infection had somehow evaded the Ciprofloxin.  So they changed to a broad spectrum antibiotic targeted to the general family of the bacterium they found in my blood.  Unfortunately, I had an allergic reaction to that antibiotic.  I developed a rash on my back.  So, as soon as the bacterium culture “specied out”, they switched me to a more narrowly targeted antibiotic.  Here is the graph of my temperature from Wednesday afternoon through Saturday morning:

Clearly some wild swings.  The spikes shook me to my core.  When things were finally normal on Saturday, the relief was tremendous.

They prescribed both a pill and a lotion for the rash on my back.  I first got the pill and the lotion at night, when Nurse Tatiana was on duty.  The lotion is called Sarna Lotion, which has Camphor and Menthol.  It felt very good to have Tatiana rub it on my back.  The next time I had the lotion, I think Michelle was the nurse on duty.  The rash had gotten much worse, and it REALLY itched.  This was coordinated with washing my back, so the logistics were a little bit complicated.  But the effect of the application of lotion to my back was OVERWHELMING.  I knew I should not be getting this much pleasure from an activity not involving my wife.  Talk about sensual.  The rash had turned my back into an organ incredibly sensitive to touch.  And the combination of Michelle’s gloved hands and the Sarna Lotion brought it all out.  WOW!

By the time Barbie got to apply the lotion, they had changed the antibiotics I was getting, so the rash was on the mend.  It was still very sensuous, but not overwhelmingly so.  Barbie told me to get over it.  She said my reaction to Michelle’s hands on my back was a holdover from my Catholic upbringing.  Maybe so, but an interesting little footnote in this whole process.  Thank you Michelle!

Since Saturday, things have only gotten better.  My numbers kept getting better, and not having a fever makes all the difference.  I had visitors and phone calls, and unlike during the crisis when I was aware that I was not holding up my end of the conversation, I felt engaged and responsive.  Monday I got out for a walk, with a physical therapist.  She showed me around the SCT unit floor, and we went to a stairwell to try stairs.  She emphasized that I am not to be overly ambitious, aiming for 30 minutes of walking each day.  I went for a couple of walks on my own later in the day.  People said I looked great, and I felt great.  I had a moderate-sized dinner, and it stayed down, no problem.  So it was with some surprise that I noticed my feet were quite swollen when I took off my slipper-socks.  The medical team said that was to be expected, given the fluids I am receiving intravenously.  I did comment to Randy this morning that something in my throat/tummy felt weird, in that it tasted as if I had just eaten supper a little while ago, not over 12 hours ago.  I ordered breakfast, and looked forward to catching up on emails and blogs while I ate with my feet up in bed.  Well, as soon as I got down the second forkful of omelet and sausage, it was clear that I needed to be mobile.  Something was not right with my GI tract, and it did not want any breakfast coming at it.  Well, in the end the little I had eaten ended up in the john.  Now I feel fine, but this process does have a way of keeping you humble.  Yes, I am better, but things are still fragile.  Somebody is in charge here, and it certainly is not me!