A Free Man

My last post was from the hospital on 2/21, when the tedium of the hospital was overwhelming.  I did get out on 2/26, and I spent the next 16 days with my son & daughter-in-law in Jamaica Plain.  They have 3 boys, ages 5, 3, & 6 months, so life there was rarely boring.  Generally the boys were always interested in having stories read to them, fighting with each other, running the track that connects their living room, dining room, kitchen, & front hallway, and torturing their parents.  I also became a surprisingly bad player of Connect-4.  To avoid interfering with the daily activities of their nanny, I endeavored to get out during the week and use my presence in JP as an excuse to visit Boston cultural icons I had never (or not recently) visited.  I had to be accompanied by a responsible adult, as who knew when a nasty side effect of the CAR-T cells would strike me.  I managed to visit the New England Aquarium, the Harvard Museum of Natural History, the ICA, and the MIT Museum before a combination of a bad cold and a major snowstorm shut the Boston cultural tour down.  The MFA and the Isabella Stuart Gardner Museum were next on the calendar, but I’ll have to drive in from Stow to take them in.  My actual and would-be companions (Sandy, Dave, Scott, Paul, Myle, Kate, & John) were not always recognizable as responsible adults, but I appreciate their being willing to put up with my company.

I have been a home-dweller, not a guest imposing, since Wednesday.  It is great to be on home turf.  In spite of wonderful hospitality and very entertaining grandchildren in Jamaica Plain, there is no place like home, to coin a phrase.

Originally I was going to have the 30-day bone marrow biopsy (bmb) on Wednesday, which was rescheduled from Friday due to a doctor conflict.  But they neglected to tell me not to take my lovenox shot Wednesday morning, and I dutifully jabbed myself, in spite of hating the process.  Apparently a bmb is incompatible with lovenox, so the bmb had to be postponed.  But they did take all sorts of blood tests on Wednesday, so they only had to take a few on Friday.

The bmb is quite an elaborate procedure.  They have you lie face down on an examination table.  Lying face down is difficult for me, as the curvature of my back means it takes me quite a while to flatten out.  Doing so while lying on my back actually feels quite nice, as the tightness of my chest gets relieved, and it feels quite good.  But lying face down does not feel so good, and the result is that you can only see the people on the side where your face is turned.  They pick out the part of the hip they are going to aim for, and mark it with a magic marker.  Then they surgically clean the area and drape it with sterile dressings.  Then they shoot a number of pain killers in the immediate area, to completely numb the surface.  The shots themselves hurt a bit, but presumably they are preventing much greater pain.  They ask periodically if you are feeling any pain, and generally the answer is NO.  But just think, the Civil War was not that long ago, and they did amputations without any anesthesia.  We have come a long way.  Eventually they start to excavate and penetrate.  It doesn’t hurt, but there is enough pressure back there that it feels like it should.  Clearly something invasive is going on, and it takes just about all the doctor’s strength to penetrate the bone.  They go in several times, first pulling out actual bone marrow, then pulling out an aspirate, or liquid from the bone interior.

About half way through the process, Doctor Nahas remarked that my Free Lambda reading on Wednesday was a big improvement.  I hadn’t checked the BIDMC Patient Site to find Wednesday’s result.  570.4!  Down from 875!  That means the CAR-T cells are working.  That is a 35% reduction.  Still a long way to go (normal max is 26), but strong movement in the right direction.  Here is the graph of the last 18 months of Free Lambda:

Suddenly, all the pulling and tugging in my back/backside was irrelevant.  Anyway, they don’t get the results of a bmb back until at least a week out, which makes the Free Lambda test seem lightning quick in comparison.  Last time we had to try to convince ourselves that a near unchanged Free Lambda reading was actually good because it wasn’t getting any worse.  Such a rose-colored-glasses interpretation is no longer necessary.  Things are really getting better, to a significant degree.

I came home to my normal computer, my normal bed, a kitchen where I’ve known the rules for a long time.  I had 1800 emails to wade through.  As of today I am all caught up.  I am back to current state as Treasurer of the Stow Community Housing Corp, which owns and runs 140 affordable apartments in Stow.  The last 2 snow storms have resulted in a great deal of tree damage in our yard, and we had a crew come with a bucket crane to cut out all the broken branches.  Then they ground all the branches they could get to into wood chips.  The place looks much better, but once the snow is gone there will be a massive cleanup required.  Then just today people came to fill in the trench across the driveway cut to lay the cable from the barn to the house for the solar panels.  They cut the trench back in December, but cold weather and then snow foiled all the dates set for filling in and finishing off the trench.  In other words, life is getting back to normal.

Until the positive reading on the Free Lambda, my planning horizon was at most a month.  At first the hospital stay and the JP stay dictated what I would be doing.  Now that we can see that things are really getting better, perhaps we can look a little further out.  I have decided once again to organize the Greg’s Legs team to participate in the Boston MMRF 5K Run/Walk on 4/29.  So everybody should expect a recruiting / donation begging email in the near future.  If you don’t drop me an email, and I’ll add you to the dunning list.  I will contact the back doctor to see if anything can be done to straighten out and lengthen my back.  We spoke with him back toward the end of January, but he said as long as the effects of Multiple Myeloma are still being felt, making repairs to individual vertebrae would only result in neighboring vertebrae breaking.  The timing of when this should take place is probably a function of how fast the Multiple Myeloma recedes.

My overwhelming emotion is gratitude.  Thankfulness that I have been lucky enough to participate in the CAR-T cell clinical trial.  Hopeful that my improvement continues to the point where I reach the state of “no observable disease” which so many other participants in these clinical trials have achieved.  To see the results of this clinical trial as announced at the American Society of Hematology annual meeting in December see www.epgonline.org/us/news/results-from-phase-i-trial-of-bb-2121--a-car-t-cell-therapy--for-multiple-myeloma---celgene---bluebird-bio.  This data was released just about the time I was being enrolled in the trial, so it does not include me.  And many of the participants at that time had not been in the trial long enough to have any results.  But clearly the results were very positive for those in the trial for an extended time period, and there is no reason I should not see the same results in time.  Again, gratitude.  Wow, have I been lucky!