THE UPDATE (status & plan)

Status: Feeling a bit better each day out of chemo…probably feeling better today than I have in weeks – just a bit tired (not having blood cells can do that to you!). 

Plan: Met with our Round 2 lead at UCLA yesterday.  No big surprises, but here is a summary of how it maps out:

• Do 3 rounds of RICE chemo (1 down).  After round 2 I’ll have a PET scan to see how well the chemo is working.  I’m expecting the growths will be nearly gone…
• When my platelets are  high enough after each cycle (don’t want me bleeding out when they poke a needle into my spine), complete 1-2 rounds of spinal (intrathecal) chemo (6 total).  This is necessary as the lymphoma has proven itself very aggressive and we can’t risk it crossing the “blood/brain barrier”.   Want more? See this prior post on Intrathecal and CNS. 
• At this point, I should be in remission (no detectable cancer).  I’ll have my stem cells harvested (from my blood, not marrow) and evaluated. 
• Assuming all pre-requisites for me to have an autologous stem cell transplant are met (here is an overview of stem cell transplant types), check into the transplant center at UCLA and then:
  • Complete additional radiation and “extreme chemo” treatments for about a week.  The objective?  Just to kill EVERY cancer cell that might be lurking anywhere in my body.  One small side effect: no healthy blood cells left, either.  Left alone at this point, things wouldn’t really be an improvement…
  • REBOOT: Get my harvested stem cells reinfused into my now cancer-free blood stream.
  • Recover: rest and avoid germs for a couple of weeks while my blood counts and immune system come back up.

We’re still waiting for a few more test results before the final plan is mapped out, but that’s the basic expected flow. Tess asked me if I knew about GANTT charts a few weeks ago…those of you that have worked with me are chuckling, I’m sure.  Anyway, here is the plan for Tess:

But there is one more twist…keep reading to learn more!

THE MUSING: Breadcrumbs

We each weave a long path through time and space.  We touch thousands of others along the way.  Some of them for minutes, some for hours, some again and again for years and years.  We don’t always know how we change each other, what residue is left behind. These are the breadcrumbs of our lives.  

More than most people I know, I’ve tried to hold onto the people from each phase of my life, not only in my heart and mind, but to reach out to them often enough to maintain some connection.  It takes surprisingly little – and I’m almost always rewarded with the feeling that our connection has survived in some real way.  

I have people in my life from elementary and pre-school in New York.  From high school in Las Vegas, From college at USC and Santa Barbara.  From jobs and places along the way.  I’ve always had a hard time partitioning work relationships from personal ones – people are people, and I’m pretty interested in them.  In the last few years in particular, I really don’t like to treat “work people” differently from “non-work people”.  I don’t maintain these connections with any particular goal in mind…it just keeps my life in focus in the context of my own personal history and evolution.  It also acknowledges my appreciation for how these people have changed me. Here are a couple of stories about how some of these people have come out to help me however they could.  

When I was having trouble getting a diagnosis on my quickly-paralyzed foot, it became obvious that the local neurologists I was working with were stumped.  One friend knew a leading doctor at Cedars Sinai who knew their top specialist in peripheral neurology. With a few phone calls, I got an appointment right away with Dr. Lewis, who was obviously in a different class than the doctors I had been dealing with.  Reviewing all the facts and checking out my symptoms, he felt he knew where the “epicenter” of the problem was. He gave me his cell phone number to contact him directly over the weekend.  When I felt a lump in the back of my leg (where I had been pointing the other doctor’s to as where my pain was originating!), I called him and he confirmed that was “the spot” and it seemed like I had a growth there.  He conferred directly with my oncologist and helped accelerate what we should have done weeks before (like Tracey thought!) and got a PET scan on Monday to confirm what we feared…the cancer was back. I don’t think I could have gotten in so quickly, or would have found Dr. Lewis without my friend, who was someone who could have easily drifted out of my life when I left the job where we met.

OK, and here’s another amazing intersection, with someone I haven’t seen in over 40 years.  It also provides the answer to what my mystery twist is from above.

I actually have two kinds of lymphoma: follicular lymphoma (FL), which is “indolent”, laying low and undetectable in my body but threatening to flare up or transform into something more aggressive any time.  Today, this type of lymphoma is considered incurable, though many people can live with it for decades.  The cancer I’m dealing with for the second time now is an aggressive diffuse large B cell lymphoma (DLBCL) that presumably transformed from my FL.  DLBCL varies quite a bit, but it is potentially curable. Since my FL remains I would still be at risk of new flare ups or transformations, though.   There are new treatments in development that could be cures…and that is where my two stories today converge. 

I lived in Brooklyn until I was almost 11.  I spent the time from nursery school at 4 years old through the middle of 6th grade at a small private school where my Dad taught, the Bialik School.  There were perhaps 20-25 kids in this one class that moved from grade-grade and class-to-class together from 1966 or so.  We spent at least 8 hours a day together 5 days a week for years.  This was family.  We always felt there was something special about us (I hope every class feels this way).  I made some great friends there, and stayed in touch after moving to Las Vegas at the end of 1971.  I even made some visits back to NY and they kept me as something of an absentee member of the class through 8th grade. I fell in and out of touch with them over the years, but in 2010 I had reached out to them to see if they could share stories about my Dad (who stayed in NY – they got to spend more time with him as teenagers than I ever did!).  My Dad had died in 1978, and I wanted to get these stories to rekindle memories share with my kids.  We created an online group, started communicating and they had a reunion in 2012 (which I couldn’t attend as I was doing Round 1 vs. DLBCL…but they did Skype me in!). 

Here’s a picture of my Dad with some of the kids from that class (4 years after I left):

As fate would have it, one of those kids turned out to have a stellar career in Cancer Research.  She has run immuno-oncology for two of the largest pharma companies on the planet.  She knows as much about the field and all the latest research as anyone.  When she heard I was sick, she jumped right on the opportunity to help.  She told us about a new class of drugs that are just going into trials that might actually be able to cure both FL and DLBCL.  These drugs are engineered human antibodies that actually can enhance your own immune system’s ability to fight the mutant cells in your body (actually, they block the mechanism the cancer uses to suppress your immune response). They don’t have the toxic effects of chemotherapy, but hold the potential to really keep the cancer under control forever. This very old childhood friend, who is so deeply involved in the leading research, is there and eager to help me any way she can.  What an amazing resource!  But somehow, the fact that this breadcrumb from my path was still a part of my life 40 years later, is even more amazing. 

WHATEVER

Well, if you’ve read this far, I’ve taken a lot of your time.  Not sure I have something worth extending our time together right now…

But, for those of you interested in this type of thing, here is link to a really good article analyzing the elements of the genius of Steve Jobs and Elon Musk (thanks, Kevin).