Greg’s Legs, Year 2

I haven’t blogged for a while, as life has been pretty normal recently.  As explained in my last blog post, my immune system was not strong enough to fend off colds from my grandchildren.  Since my last hospitalization at the end of December, I have been quarantined from my grandchildren, so I have stayed well.  I have resumed exercising, and I have been feeling really well.  Dr. Levine, my oncologist, said I must not see my grandchildren until springtime.  Well Spring arrived on 3/21, so in spite of the snow still on the ground, I saw the grandchildren.  This past weekend Barbie had a concert on Sunday, 3/23.  The concert was a triumph.  A Tchaikovsky cello concerto and the Brahms Requiem.  Everybody – audience, chorus, and orchestra – agreed that the performance was top rate.  Barbie really knew her stuff, and she got everybody to work together and create beautiful music.  All 3 grandchildren were here for the weekend, and I got to be with them for varying lengths of time.  I noticed significant differences, just in the 3 months since I was last allowed to see them.  Emma in particular is now quite a climber, and if you turn your back on her she is into or on top of something in no time flat.  Actually, as 3-4 days have now gone by, I have started to get cold symptoms.  Nothing intense yet, but proof that I still need to be careful, in spite of the calendar.

In a month I plan to run in the MMRF 5K race in Boston, 4/26.  In a repeat of last year, we have a team named Greg’s Legs participating, either as runners or as walkers.  Please go to support.themmrf.org/goto/GregsLegs to sign up to run or walk with me or to support those who are participating by making a donation.  I happen to be MM free right now, but when it comes back (which it always does) the drugs that worked so effectively in my first encounter with the disease are unlikely to work as well.  The logic of big numbers and natural selection works against me.  The drugs that worked well initially got all the MM cells that were susceptible to their effects.  Probably 99.999% of the MM-affected white blood cells.  But that means .00001 of the white blood cells survived.  Given that there are about 40 billion (4 x 10¹⁰⁾ white blood cells in the normal body, that means 400,000 (4 x 10⁵) survive, and some of them are likely to be bad.  And since they survived the onslaught of the drugs they treated me with back in the summer of 2012, those drugs will have little effect when the MM comes back.  So the doctors need to use different treatments for recurrent MM.  The net result is that my chances improve as they develop more weapons to fight the disease.  I don’t mean to be self-centered, but being vulnerable suddenly makes you a big fan of anything that can improve your lot.

Here is a picture of last year’s participants, ranging in age from 69 (me) down to 4 months (Brendan):

  

The race is early on a Saturday in the springtime.  A perfectly level course where you go out for 2.5 kilometers along the curve of Carson Beach.  Then you come back on the other side of a divided highway.  So us slow, old runners get to see the rabbits fly by on their way back, and we haven’t even gotten through a third of the race.  But later we are heading back to the finish line, passing walkers who are still on their way out.  At any rate, it is a good course, a good cause, a fun event, and (ideally) a glorious spring day.  So come run or walk with us and have a great time!

Thursday I had a monthly checkup with Dr Levine, my oncologist.  He gave me a new way of thinking about the disease.  He said all cancers grow at predictable rates, and when the tumor burden reaches a critical level, then the human body is overwhelmed and you succumb to the cancer.  Here is a picture Dr Levine drew (with his hands):

The basic idea is that the cancer grows at an increasingly faster rate, a logarithmic rate.  A lot depends on the units on the time dimension.  For example, leukemia happens to be a fast-growing cancer, so if you kill off 99.99999% of the leukemia cells and set the disease back to the left-hand side of its curve, you only buy a few weeks, as the cancer grows fast enough to reach critical tumor mass in that short a time.

Multiple Myeloma, on the other hand, happens to be a relatively slow-growing cancer.  It takes years to do what leukemia does in weeks.  So my initial treatment and the stem cell transplant, by setting the disease back to the far left of the curve, buys me several additional years.  They don’t know how many because they don’t know how fast my particular cancer is growing and they don’t know exactly how far back they set it.  Furthermore, a mutation may happen that can have negative results.  The mechanism that tells cells they have done their job and they can now die off can get turned off.  Or the rate at which the cancer cells choose to divide can get accelerated, thus increasing the speed of growth.  If either of those things happen, then I will be back dealing with the disease sooner than expected.

Dr Levine did say that the medical profession now has many tools at its disposal to treat the disease, so he did not want to be overly gloomy.  He did not have time to go into exhaustive detail, but he did say that they have good treatment options.  I am a member of the MMRF (Multiple Myeloma Research Foundation), so I get monthly emails from them and a quarterly newsletter.  They are always recruiting for people to join in clinical trials.  They also list the many new drugs they are helping to sponsor and the stage of development they are in.  Recently they have announced an open-source database of people participating in various clinical trials, including not only the results of their treatment but their key genetic information as well.  This is normally information that is held closely by the companies developing the new drugs, so that they will have a competitive advantage.  Clearly the MMRF was powerful enough to negotiate with the drug companies to change their normal “rules of engagement”.  I was certainly a fan of open source software in the computer ecosphere.  Let’s hope that open source clinical trial information will have a transformative effect on bringing new therapies to market.

The message of this blog post is pretty simple: Go to support.themmrf.org/goto/GregsLegs and sign up or donate.  Last year you were incredibly generous.  Thanks, and please be as generous again this year.

A Mundane Effect of a Stem Cell Transplant

I have not posted anything for a long time, because there was very little to say.  No more unusual treatments, no more things that if they weren’t happening to me I would guess to be impossible.  Yes, I was taking 11 pills a day, and yes I had to do some exercises to strengthen my core to compensate for a curved back.  But nothing unusual.

Well, one of the mundane effects of having a stem cell transplant is that you have a completely new immune system.  Your white blood cells go to zero before the stem cells begin to replace them, and the net effect is that you lose all your acquired immunities.  Apparently when your white blood cells figure out how to defeat a particular bug, enough of them remember that bug so that the next time the bug appears, the white blood cells can respond to it faster than it can proliferate within your body, so it never gets a chance to make you sick.  Well, all that white blood cell memory is wiped out.  You get to reestablish your immunity one bug at a time.  They also have to give you all the inoculations you had as a child, as all those externally induced immunities are gone as well.  They don’t give you even the inoculations given to newborns until 1 year out, as your system has to build up a certain base of operations first.  And then there are some inoculations like polio that they don’t give you until the second anniversary because there is the chance of dire effects before that time.

Well I sailed through the spring and summer without getting sick.  Here I was coming up on 11 months from the stem cell transplant in September, thinking the continued statements by my oncologist about a compromised immune system were words I didn’t have to worry about.  Then in October I got a cold, an ordinary, mundane cold.  We had a trip planned to California to see Yosemite with my youngest brother and attend (actually run) a Friends of Nigeria biennial meeting.  Well, I still had the cold through the trip, and I was surviving on cough syrup and cough drops.  The visit to Yosemite was killed by the government shutdown, but we got our deposit back, and the northern California coast was a wonderful replacement.  

The cold just wouldn’t go away, or what did go away was quickly replaced by the next one.

It was serious enough that I spent November 4^th – 8^th in the hospital.  I got progressively sick over the prior weekend, and I spent a lot of time in bed.  Sunday I just couldn’t get warm, in spite of having an electric blanket on high.  Monday I reported my symptoms to my oncologist, and he said I should come into the clinic.  He decided to admit me to the hospital.  23 hours of sleeping for the first 2 days plus intravenous antibiotics pulled me out of the slump, and put me back on my feet.  They took lots of tests, none of which told them exactly what I had.  By then end of the week they let me go, in spite not having nailed down the ailment.  Apparently most viruses are not distinguishable by the array of tests available to the doctors. 

Things went relatively smoothly for the next couple of weeks, culminating in a very nice concert by Sounds of Stow with Barbie conducting.  Unfortunately, our grand-niece died on the same day as the concert, which derailed the post-concert party and led to a major family crisis.  I continued to have a low-level cold, but other things were more important.

Sue Englund, Jess’s mother, normally provides 2 days of daycare per week for Tyler and Emma, Jess & Andrew’s children.  Tom & Sue had a 3-week trip to Europe scheduled for some time, so Barbie & I filled in as much as we could in Vermont during the first 3 weeks of December.  Sometimes we were together, sometimes I was on my own, as Barbie is still teaching 4 days a week.  Unfortunately, Emma (the 11-month-old) was continually sick.  Runny nose, cough, whatever.  Tyler was generally healthy, but he had a bout of diarrhea.  The net result was that every time we went to Vermont, I came back with a deeper cold.  I saw Dr Levine on 12/19, and he said I needed to break the cycle of reinfection.  He said it would probably be impossible over the holidays, but I should really aim to do that once they were over.  Well, I never made it past the holidays.

We spent Friday & Saturday (the 2 days after I saw Dr Levine) in Vermont, doing the daycare thing.  The kids had lots of cold symptoms, but lots of energy too, so whatever they had wasn’t getting them down.  Well, it certainly got me down.  We returned to Stow for a Saturday night Christmas party, and I had to blow the whistle early, as I ran out of gas.  The cold raged for the next few days, and on Christmas day in Jamaica Plain (our son Brian’s house) I took a nap during the middle of the day, sleeping longer than our grandchild, Brendan.  Well further exposure to Brendan was not good either, as Thursday things were decidedly worse.  By Friday Barbie insisted on contacting our GP and I went for a chest x-ray and blood tests.  The GP examined me, and sent me to the Emergency Room.  The ER contacted the people at Beth Israel, and they shipped me into BI that night. 

Saturday was actually the date for the Jones family Christmas in Stow.  They went ahead in my absence, and I am told it is a good thing I wasn’t there, as there were several sources of infection at the event in addition to the grandchildren.  I spent most of the day sleeping or going for a CAT scan of my chest.  Nurses & doctors coming into my room would wear hazmat suits to protect themselves from my germs.  I did have a facetime session with the people in Stow, but I had little energy to worry about what I was missing.  Sunday I was still in the grip of whatever I had.  Another CAT scan, this time of my head to examine my nose and sinus areas.  By Monday they had a diagnosis: pneumonia and sinusitis.  I started to feel better, and have some energy.  Monday night there was a dramatic improvement in my symptoms.  My nose cleared up, and I was able to get through the night with relatively little coughing.  Tuesday they decided I was well enough to go home. 

Well, not actually go home, as Barbie had a wicked cold by this time as well.  So I have spent the last 2 days at the Zettlers, good friends who are both well themselves.  They are capable of fending off anything I may have brought into their house, and they have a nice guest bed with its own bathroom.  I spent just enough time at home to get the necessaries for my staying here.

So I am now better, and will soon be home.  I have been warned that I must avoid continued exposure to sources of infection.  That means I should avoid contact with grandchildren until the spring.  That means I will not attend their joint birthday party this coming Sunday.  That means I will be unavailable for babysitting of any kind until the cold/flu season is over.  That means I will wear a mask and gloves in any situation where I have to share space with someone who has cold symptoms.  That means I will wash my hands at much more frequent intervals than normal.  That means I will wear a mask and gloves to attend the theater.

Here I thought I had gotten over the hump by almost making it to the first anniversary of my stem cell transplant without getting sick.  Then I got a series of very ordinary colds that repeatedly laid me low.  The disease continues to shape my life, just this time by the mundane event of colds that carry much more of a knockout punch for me than they do for normal people.  Presumably my immune system will continue to pick up new immunities, but meanwhile I need to not overstress it.  Dr Levine explains this as if it is not rocket science, and a 2^nd grader should be able to understand the concept.  But it took 2 sessions in the hospital to get it through my thick skull.  I really don’t want a 3^rd session in there.

So all of you who are out and about in the world and staying well should say a special thank-you to the white blood cells that are fending off infection for you.  They do an amazing job, and one we all take for granted.