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.