Release?

Wednesday, 11/14

I am REALLY feeling better.  Today I ate a full-sized breakfast, and it has stayed down.  Yes, there are occasional burps, and a general sense that the GI tract is still sensitive, but this represents a MAJOR advance.  They have reduced the amount of fluids I am getting through the IV line, so I am drinking more.  All steps on the road to normalcy.

The big question is when can I get out of prison?  Apparently the biggest issue is treatment for the infection I developed at the bottom of my blood readings.  My particular blood infection (Strepta Verdins) is dangerous because it can lodge around the heart and infect heart valves.  So the preferred treatment is 4 weeks of an infused form of penicillin.  The idea is that one wears a fanny-pack and there is a pump that feeds the liquid antibiotic into a PICC line in your arm.  Unfortunately, such treatment is not covered by Medicare, so it is pretty expensive.  Barbie & the case worker are going to hash out the alternatives tomorrow morning.  Apparently the least-cost alternative is to come into Beth Israel every day and have them infuse a variant that can be administered once every 24 hours.  But that commits me to coming in here for 28 days.  All to be worked out tomorrow morning.

The rash is gone.  Appetite is back.  I got a little chilly today, but turning up the thermostat has solved that problem.  I now take frequent walks around the floor.  I even have taken a shower the last 2 days.  The first shower in 2.5 weeks, and it felt pretty good.

The guest roster today featured the Greenfield branch of the Jones family.  Margo came mid-afternoon.  Then Olga, Brewster, and Georgiana arrived.  Babies are not allowed in the Stem Cell Transplant unit, so Margo + Olga played a tag-team taking care of Georgiana in the ground floor lobby while the other visited.  Olga as a young mother looks REALLY healthy, and she certainly seems to be enjoying raising her child.

Much of the release procedure involves paperwork.  Randy Goldberg has committed to expediting that.  Then the nurses have to complete their paperwork.  The odds are that the actual release will be Friday or Saturday.  Barbie has made it clear that she cannot be involved on Saturday, and if it is after 12 or 1 on Friday, she will be a phantom as well.

Tonight I had another chicken pot pie, and I finished all of it, plus some chicken noodle soup.

Thursday, 11/15

Well, the Wednesday blog never got off.  Now the release date is pretty definitely Friday.  Brian will pick me up, after delivering a work presentation at 1PM to a networked meeting of his colleagues.  I checked with Tatiana, and it is unlikely I will get out of here before 3PM.  And if Brian is not available, they are not going to kick me out.  Brian can’t just drive by the front.  He has to park and come up, as they will not release me on my own recognizances.

So today featured a long discussion of what kind of antibiotic program to get on, and how to pay for it.  The net result is that we are going to pay $60/day for home infusion of penicillin.  The good news is that the days I have already been on antibiotics here at the hospital count toward the 28 days.  So we will only have 20 days or $1200 to pay for.  Unfortunately, the guy who was going to put in the PICC (Peripherally Inserted Central Catheter) came while the antibiotic strategy discussion was still in full bloom, so I lost the morning window for that. 

A lady named Peggy came by in the afternoon to insert the PICC line.  Here she is setting up for the procedure:

Ultimately she put a very narrow tube from inside my right elbow through my chest to the superior vena cava.  That is the same place that the sub-clavian line went, and they are just as concerned about possible infection through this line.  The size of the line/tube is impressively small:

My eyes are not good enough to actually see that it is hollow.  I trust that it is, as it acts that way.

Peggy was quite competent, and she was quite confident that everything went to the right place.  But they took an x-ray of the chest to verify that.  They have a portable x-ray machine that does not involve film.  Instead the plate that they stick behind your back communicates the image wirelessly back to the x-ray transmission device.  A pretty neat use of current technology.

Who is that guy who looks so old?

The x-ray machine has a pretty cool name:

Meanwhile I’ve been getting some exercise.  Here I am in the common room at the end of the hall, next to an exercise bike.

I have to wear a mask and gloves whenever I go out of the room, and I get to take my infusion bags with me.  Being able to get up and about revives a problem that receded from view while the transplant was going on.  Specifically, I still have a crooked spine, and it is difficult to stand up straight.  As a result, my lower back gets quite tired as I walk around the floor.  The solution is to get most of my exercise on the stationary bike you see in the background in the picture above.  When you are on the bike, the weight of your torso is carried by your arms, so the lower back does not get tired.  Clearly this issue will have to be addressed after I recover from the SCT, but for now the bike minimizes the problem.

I had a full-sized breakfast and a full-sized dinner, so the gut appears to be able to handle food.  I am told I should aim to drink 2 liters of fluid every day.  I don’t think I normally average 2 liters of fluid a week!  But they are keeping count, and they imply they won’t let me out the door if I am significantly short.  Funny what motivation can do for you.  I’m just hoping that as the IV fluids go away that the waking up in the middle of the night every 2 hours goes away as well.  I can always dream…

Friday, 11/16

To quote the old joke, “Today’s the day!”  The medical team and Tatiana, my special nurse, say they will get the paperwork done expeditiously. 

I must be an emotional basket case, as I completely broke down in tears as I thanked the medical team for pulling me through this.  Naturally, they deferred, saying it was no big deal, and my complications were not too bad.  But that is not the way I feel, and I am glad I was able to tell them so.  I also said a special, teary thank you to Tatiana.  She was here when I was in the depths of the infection, and the care she provided was incredible.  Actually, the whole nursing staff here has been wonderful, but it is impossible to thank them all because they are never here all at one time.

There was a slight bump along the road last night.  The PICC line felt a little weird.  And it had the effect of causing my heart to make unusually powerful beats sporadically.  This was worse if I lay on my right side, the side where the PICC line is located.  I told the nurse last night about it, and she said she would check with others to see if that is an expected effect.  I also told Randy Goldberg, the intern who checks me every morning, about it.  Of course, by this time when I lay on my right side, everything was normal.  They had another chest x-ray taken to confirm that the PICC line is in the right location.  They probably will pull the line back a bit, so if I lay on my right side, it won’t be pushed in too far.  If the line were to be used for chemo-therapy, then it would need to be right in the superior vena cava, right above the heart atrium.  But the line will only be used to administer antibiotics, so it does not need to be in as deep.  So there probably will be an adjustment later this morning.

My numbers have pulled back a surprising amount.  They said there would be a reduction in the numbers as a result of stopping the Neupogen shots.  But still, the pullback is significant.  They do plan to give me one more Neupogen shot today, to boost things back up.  They say over time, my reconstituted stem cells will bring the numbers back up, even without Neupogen shots.

The plan is for me to come back into the outpatient clinic on Sunday so they can draw blood samples.  Then Monday or Tuesday I should see the Nurse Practitioner in the outpatient clinic.  So I will not need to come in every day.  Freedom!

Getting out of here is a great thing, but it does imply more responsibility for taking care of myself.  I will be staying at Brian & Bridget’s house in Jamaica Plain until they say I no longer need to be within 30 minutes of the hospital.  Only then can I go back to Stow.  There is a whole notebook of do’s and don’ts, and now we need to implement them.  The good news is that I only have to adhere strictly to the guidelines for 30 days, and today is already day 17.  That is because I had an autologous transplant.  If I had had a transplant of someone else’s stem cells (an allogeneic transplant), I would need to follow the guidelines for 90 days.  Again, I am incredibly lucky.

Yesterday afternoon a lady trained Barbie and me in how to deal with the pump that will deliver penicillin to me every 4 hours.  We only need to change the setup once a day, but we have to be incredibly careful to keep the PICC line input device clean.  The connection from the pump itself has to go directly from the plastic thing covering it onto the PICC line.  If it touches anything, we have to throw it out.  Again, this is a direct line into the area directly above the heart, so you don’t want to play around with it.

Thanks to everyone who has been reading the blog.  Clearly, it has been useful to me to just get things down on paper.  But knowing that people I care about are reading it has helped me express things that can be pretty hard to say.  I’ve spared you some of the more embarrassing aspects of the process, but not many of them.  I am incredibly grateful that I have made it through the process.  Now let’s hope it has the promised effect of a prolonged remission of the Multiple Myeloma.

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!

On the Rebound

Your blogger is feeling MUCH better.  I get quite emotional when I say it, but it feels like I have walked through the valley of the shadow of death.  Luckily my valley was quite steep and relatively short, but it was profound.  I am glad to have that part of my journey behind me.  I am incredibly grateful to the medical staff and support team for getting me through it.  [Pause while I clear some salty water from my eyes.]

Some of the story can be seen in graphs of my blood counts.  Randy Goldberg, the intern who checks me every day, points out that the medical staff relies upon different data than what I showed in my graphs before.  The first graph from before shows my white blood cell count.  Here is a version Brian spiffed up to show the data on a log scale and to add some event annotation.

But the WBC is not what the medical staff follows.  They follow the Adjusted Neutrophil Count, which is the white blood cell count times the percentage of neutrophils.  Apparently there are some types of white blood cells that don’t actually participate in the immune process.  These are the ones that do.

Gone are the log scale and the annotations, but you can probably figure out when I was feeling pretty lousy.  These are the numbers of useful white blood cells per micro liter.  That is 1 millionth of a liter.  You or I normally have 6 or 7 liters of blood in our bodies.  So if 4000 is where I came in at on 10/26, that is 4000 times 1 million for each liter or 4 billion per liter, which totals out to 24 billion Neutrophils for the whole body.  Amazing!

The medical staff does follow the platelet count.  The numbers shown in the following graph are not just my platelets.  When my platelet count got below 30, they infused me with “bags” of platelets.  So the bouncing along the bottom is the result of infusions, not my own system producing more platelets.  Yet.

The net result is that they no longer give me a Lovanox shot each day.  Those were given instead of Coumadin to prevent over-coagulating, which apparently my body does.  And I am told to be careful blowing my nose, to avoid bursting any blood vessels in my nose.  My nose periodically drips, and often there is blood as well.  Apparently part of the process.

Again the numbers are staggering.  The units are K (thousands) per micro-liter.  So if I was at 462 on 10/26, that is 462,000 per micro-liter or 462,000,000,000 per liter.  That totals out to 2,772 billion in a 6-liter body.  Good thing they are pretty small.

I showed the red blood cell count before.  The medical staff relies upon the Hematocrit Percentage instead.  Apparently this is a better measure of the oxygen-carrying capacity of the blood.  The number of red blood cells is staggering.  I came in on 10/26 with a red blood count of 4.14.  The units are m/uL or millions per micro liter.  4.14 million per millionth of a liter means 4.14 X 10¹² per liter or 24.84 X 10¹² in my whole body.  And each red blood cell carries 270 million hemoglobin biomolecules.  I won’t do the math, but the numbers are really large.  Somehow the count is not as important as the overall percentage, so the hematocrit percentage is what they pay attention to.

I was just below the minimum when I arrived, and I have continued downward ever since.

When I finish this post, I am going for a walk!  They said my numbers were high enough yesterday for me to leave the room, so long as I didn’t overdo it and stayed on the floor within the unit.  I watched football games instead, and then it was too late.  So today’s the day!  More on the details of what happened in days 6-12 later.  Today is day 13 (since the stem cell transplant), and things are definitely looking up.  Again, I am incredibly grateful.

Guest Entry from Barbara

Hello Everyone,

Greg sends you his greetings, and thanks you all for your good wishes as he goes through the roughest few days of this process.

Wednesday, or Day 8, started fine, with his eating his first bit of food that actually stayed down -- toast and scrambled eggs. He rallied enough to beat me in several rounds of "Pounce", a rather vicious game that brings out the competitive side of any participants. I left around noon to return to Stow to see students that I had not seen in two weeks, thinking that he had turned a corner and would be emerging from the most uncomfortable aspects that he has detailed so well.

While driving back to Boston late that night, I learned that soon after I left, he spiked a fever, which went over 104, leaving him alternately sweating terribly, yet shaking uncontrollably with chills.

Thursday, Day 9, was the worst, and one that Greg does not remember in great detail, thankfully. The fever ranged between 100-103, depending on the medication. Obviously he had an infection, and with a white blood cell reading of less than 0.1 (normal values are 4 to 11) -- in other words, no ability at all to fight any infection -- his body succumbed. All day long, various teams of nurses and doctors were in, as they waited for lab results that would narrow the possible source of the infection so that they could administer a targeted antibiotic. They narrowed the source of the bacteria to mouth, bottom or the central line itself, which, as a foreign body, can be a site for infection, in spite of all imaginable precautions. They removed the central line and installed two separate IV's, as they need to be able to administer more than one drug at once. He received two separate infusions of platelets, as they also had dropped significantly. Oxygen helped the low hemoglobin; blood pressure dropped; an EKG was administered to rule out heart problems related to fast pulse.......the parade of doctors and nurses has just been responding to Greg's conditions as they develop.

Meanwhile, Greg has just felt absolutely terrible. In addition,the GI tract has been pretty well destroyed, so you can imagine the consequences.

Today, Friday, Day 10, has been a bit better, as the fever has been held to under 100, so Greg has not had to endure the chills and sweats, but has been very tired. The goal for the day was to get him washed and to begin to update the trials of the past two-and-a-half days, but even sitting up brought on such fatigue that it wasn't until mid-afternoon that the washing was accomplished, followed by a lengthy sleep.

During the day, various doctors, including two infectious disease experts, continued to analyze the various lab reports, Greg's reactions to medications (he has developed a raw and itchy rash across his back -- no known reason), and to confirm that he will pull through this. The wonderful team here has been very reassuring that he will be feeling better when the white blood cells and platelets begin to reproduce.

More details later. Thank you for your patience and all your good wishes.

Barbara

Blood Counts

As anticipated, the Melphalan has had a dramatic effect upon my blood counts.  Here is the graph of my White Blood Count since I came in on 10/26:

The horizontal lines are the min + max of the normal range.  The Melphalan was administered on 10/27 + 10/28.  Who knows why the count spiked up on the 29th?  It appears that there is significant measurement variation in the blood samples they test.  Recent information: the nurse who just looked at the graph said I got a steroid along with the Melphalan, and that can cause the white blood count to spike.  At any rate, the trend since that time is clear.  And it is also clear why I need to steer clear of infection.

 The platelets are also showing the same trend.  I got the normal range from Lab Tests Online, so I am assuming the units are the same, but I am not sure.  At any rate here is the picture:

They are currently giving me a Lovanox shot every day to prevent blood clots (platelets are what enable your blood to clot).  They will cease those shots when the platelet count gets below 50.

My Red Blood Counts have been below the normal range all along.  Who knows why?  They are trending down, but at a much slower rate.  That’s because red blood cells live for 90 days, so you have a 90 day inventory at any time.  Losing the addition of new red blood cells for 7 days has just a slight impact on that 90-day supply.

There it is.  More than you ever wanted to know about someone’s blood counts.  They are important to me, as only when the counts rise back to the normal levels will I be allowed out of my prison.

Days 1-3

The last post ended with the comment that just the applesauce made it down and that a little nausea is not so bad.  Well, the applesauce did not stay down, and the net effect of cookie-tossing is pretty unpleasant.  The doctors have now put me on a ‘preventative’ dose of Zofran, the anti-nausea medicine.  When I want to eat something, I can ask for additional Ativan, which I took over the summer as Lorazepam, which both controlled nausea and helped me sleep when I was on the steroids.

The food intake has been pretty minimal.  Day 1 I tried starting off with a cup of apple juice.  It stayed down no more than 15 minutes.  Later with the help of the anti-nausea medicines some chicken broth served as lunch.  Then some raspberry Italian ice was supper.  Day 2 featured a piece of toast with tea.  That seemed to work well, so Day 3 I had 2 pieces of toast with tea.  The nurses are just as interested in what I pass.  I will spare you those details.

Meanwhile, Hurricane Sandy came through.  It was quite a non-event here in my isolation chamber.  But it did knock down a rotten tree in a strategic place at our place in Stow, so we sent out an appeal to LotsOfHelpingHands for males with chainsaws to help.  The response was overwhelming, and the job was taken care of the very next day:

They claim nobody even lost any fingers!  Anybody who needs any firewood, the Jones property has an unlimited supply of unsplit wood.

I am extremely impressed by the staff here at Beth Israel.  Responsive, helpful, cheerful, knowledgeable, and friendly.  So this blog has adopted a policy of trying to record everyone who helps out as an oblique way of saying thank-you.

Here is Nurse Bridget with an array of packaged foods that an immune-compromised patient can eat.  [Whether one wants to or not is a different question.]

Here is Primary Care Technician Sara taking my vital signs.  Vital signs consist of blood pressure, temperature, pulse, & blood oxygenation.  So far I seem to be staying alive.

Here is nurse Tatiana seeing if I still have a pulse:

Here is the meal I was able to keep down.  You decide which thing in this picture is toast:

Here is the medical team that makes the rounds every morning: Fellow Anish Sharda, some old guy, Attending Physician Vicki Boussiotis, and Resident Randy Goldberg:

Here is PCT Marie checking my blood pressure with a great smile:

Here is Nurse Julie who just delivered my blood counts for the period 10/26 – 11/2:

The blood counts will be the subject of my next blog.

Judy Wagoner is the Nurse Practitioner who dealt with me in the outpatient clinic.  She had a meeting here at the Bone Marrow Transplant center, so she came by to check up on me:

The biggest surprise on Day 3 was the state of my tongue.  They warn you that the cells in your mouth and GI tract are some of the fastest dividing cells in your body, so they are greatly affected by the Melphalan.  The result for the tongue is that it turns white.  Seeing that cadaverous tongue has inspired me to be extra diligent with the mouthwash for cleaning the mouth and the lozenges they give you to disinfect the mouth and GI tract.
I have had a steady stream of visitors, headed by Barbie, Brian, & Bridget.  A certain amount of cards has been played, and no quarter has been given.  Barbie & I even struggled to an exact tie in Pounce.  So life goes on, but the chemo is beginning to have an impact.