Start of Stem Cell Collection

Wednesday, 10/3, we went into Beth Israel for the start of the Stem Cell Collection phase of my treatment.  Things have gone well so far, but the side effects are just beginning to hit me (Thursday night).  So the odds are great that this blog post will be a several –session effort.

First there was the issue of whether something had to be done to my teeth before I underwent the SCT (stem cell transplant).  I had a cleaning on 9/24, and they took a full set of x-rays.  There was some concern about shadows in my left jaw under a 1986 root canal.  The shadows indicate something might be brewing there.  The latest prior x-ray of that part of my mouth is 2005, and it looks very much the same.  The solution would be to pull the tooth and graft some bone there.  But I feel nothing amiss there, and there is no observable change from the 2005 x-ray.  The question is whether an infection would be unleashed when my immune system is completely down.  So the x-rays and questions were sent to a dental unit at Brigham & Women’s Hospital.  The response was that nothing needed to be done before my SCT.  Thank heaven, as that would have delayed everything by quite a bit.

So we set off on Wednesday at 8:30AM.  As we were leaving, painters were arriving to redo our bedroom.  Our bedroom has not been redone since the owners prior to the ones from whom we bought the house, so it is at least 35 years old.  And there was water damage from a leaking gutter that we  fixed the first year we were in the house, 1982.  Since mold is the enemy of anybody with no immune system, that bedroom was a fortress full of enemies.  Barbie is still deciding on new window treatments, so it will be a while before the upheaval is completed.

Meanwhile, the traffic proved why I will need to be much closer to the hospital when I am released after my confinement.  Near gridlock prevailed on several intersections west of 128.  Overall it took 1:45 for us to get into the hospital.  They took blood, and I went for a full body x-ray scan.  The blood indicated that everything was still fine for the SCT, and the bone scan was to establish a baseline to compare against later.

The doctors listened to my vitals and declared everything was ready to go.  I did ask about the planned treatment, as I had spoken to someone who had taken Neupogen as part of her treatment for lymphoma.  In her case it had enabled her blood counts to recover.  And the Wikipedia entry for Neupogen says “Filgrastim (another name for Neupogen) is in a class of medications called colony-stimulating factors. It works by helping the body make more neutrophils.”  Neutrophils are white blood cells.  That says nothing about causing stem cells to go into the blood stream so they can be collected.  The doctor explained that the Neupogen causes so many white blood cells and stem cells to be created that there is no more room for them in the bone marrow.  Therefore, they are forced out into the blood stream.  That is why one common side effect is bone pain, as the cells are forced out.  He promised me that I will soon learn what bone pain feels like.

The next step was to admit me to the hospital (in a different area, Feldberg 7) for an overnight stay.  The result was mostly waiting.  They stuck in an intravenous line.  The technician said they rejoice when they see veins like mine.  Then they started a saline drip to make sure I had sufficient fluids and to counteract the anticipated effect of the Cytoxan on my bladder.  Apparently Cytoxan can cause bleeding in the bladder, and frequent urination is an antidote.  Then there were other pre-Cytoxan bags of medicine they needed to give me, the names of which I have forgotten or never knew.  Then they had to wait until the Cytoxan doses were “made up”.  Finally around dinner time the Cytoxan arrived.  I got 3 doses, each of which took an hour to infuse.  They were spaced at least 2 hours apart, so the final dose was not finished until 4:30 AM.

Meanwhile, my sister Teena arrived at Logan from Portland, Oregon for a visit.  She is here both to visit me and to visit our new niece, Georgiana Bingham, Margo’s new granddaughter.  Olga and Brewster Bingham live in Acton, which is adjacent to Stow, so Teena is getting 2 birds with one stone.  Teena went by the T to Brian & Bridget’s in Jamaica Plain.

The evening turned into quite a social event.  First Bridget arrived after a 5-mile run.  This is a busy doctor who is 5 months pregnant.  Then Brian and Teena arrived with Thai food for supper.  While we were eating, Elizabeth Beck, a Physican’s Assistant who lives with Brian & Bridget joined us.  Elizabeth works at Children's Hospital, and Bridget knows her from the year she did an internship there.  After enjoying Thai food (while getting a various drips), we all watched the presidential debate.

One of the things they give you along with the Cytoxan is dexamethasone, a steroid.  That is the same as I got over the summer, and once again it kept me awake.  I actually got my second dose of Cytoxan at 11:30, so I took a pill to help me sleep then.  The net result was I probably read an extra 50 pages of my book (Why Nations Fail – which explores why some countries are rich and others are poor even though they have the same external characteristics – a good book).

The net result was a highly interrupted night of sleep.  But I didn’t feel too bad on Thursday.  Barbie & Teena stayed in Jamaica Plain.  Barbie + Brian went to a BSO Open Rehearsal.  The doctors on duty came by and declared I was still alive.  Teena arrived mid-morning, soon after I had a shower and changed to civilian clothes.  But the medical adventures were not over.  They took some blood tests, and I was low in calcium and phosphate.  So before I could be discharged, I needed yet another bag and a half of fluids.  All this was happening as an anticipated deadline of 12:30 was approaching.  12:30 was when we were anticipating the BSO Open Rehearsal would be over and Barbie would arrive, eager to get to Stow for afternoon piano lessons.  But we had a slight reprieve in that the rehearsal lasted until 1:00.  As it was, Barbie got to park and come up to the room before all the drips were finished and I could be discharged.

I was glad I was not driving home, as in spite of both Barbie + Teena as companions, I fell asleep a couple of times during the ride.  As it was, it was a high pressure ride as the first 2 students were cancelled, and it was nip and tuck whether we would get home in time for lesson 3.

Teena & I set off for town, as I had to submit 4 prescriptions to be filled.  We then went onto Acton to visit Georgiana, our new niece.  She is now 3 weeks old, and doing very well.  We both got to hold her after she was fed.  She didn’t fuss at all, and she made all the little cooing noises that delight aunts and uncles.  Eventually I started to get the hiccups, and decided I had better get home to my storehouse of medicines to help control the side effects.

By this morning (Friday) the side effects were starting to kick in.  The most severe was nausea.  I really didn’t know if I was going to keep my cookies down, and I ate my breakfast fruit with a bowl handy.  One of the prescriptions we took to the pharmacy Thursday afternoon was a refill of the anti-nausea pills, so I went up to the pharmacy and picked them up.  It made all the difference, so the bowl became superfluous.  Ultimately I spent most of the afternoon taking a nap, as the fatigue set in.  I am still feeling pretty good, but I wonder how much that is because of the steroid, which you take for 2 days after the Cytoxan.  I have noticed that the steroid has the effect of making me much testier than normal.  I tend to bark back much more when I perceive I am being nagged (sometimes even when the source says she is not nagging).

We plan to retreat to Vermont this Columbus Day weekend.  Two reasons.  First, to see our grandson, Tyler, who is a delightful 2 ½.  Second because there is a WWII reenactment in our neighborhood that will make life unbearable here because of the noise.  The noise is all the more obnoxious because we believe the airport it originates from was created under false pretenses.  It will also have the effect of traffic gridlock, so we are escaping as soon as possible tomorrow morning.

At 5:30 this evening I injected myself with my first shot of Neupogen.  It comes in individual vials?? That you inject subcutaneously.  You either inject them in your belly fat or in a fold of skin on your legs.  I find the belly fat easier.  This probably is because in the absence of running I have developed a bit of flab.  Or because I am now 3” shorter, the stomach is not stretched out as much.  At any rate, that is where I got the Velcade over the summer and that is where the Neupogen is going now.  It has the benefit of not bleeding.

So that is the start of the stem cell collection process.  I am told my blood numbers will plummet over the next week.  That should make me feel pretty crummy.  Then the Neupogen should kick in.  More boring details to follow.