
I checked into Mass General today for what will be 1 of 2 stem cell transplants.
This will be a long summer & the realization of what I’m in for struck me when I started unpacking and settling in.

I checked into Mass General today for what will be 1 of 2 stem cell transplants.
This will be a long summer & the realization of what I’m in for struck me when I started unpacking and settling in.

To me, a stem cell transplant is still a mystery. I understand it theoretically, but it still seems like some sorcery. When I spoke briefly via phone with the doctor in charge of bone marrow/stem cell transplants at Mass General Hospital (MGH) before my appointment (April 20), it sounded like he wanted me to start the procedure the following day. There was this sense of urgency. I was, and am, ready. I needed the time (since being told of the recurrence) to accept and come to terms with it and thus prepare myself (on every level) for the next steps. Being “ready” on a purely medical level is accepting what is and the facts. Being “ready” on every other level only acknowledges the work and tasks ahead.
When initially diagnosed, I didn’t have time to think about everything, seek out other opinions, or talk to survivors and current patients in treatment. It was a seizure, hospitalization, surgery, and treatment. I understand that some of me was in denial when informed of the recurrence. Naturally. I also knew, from the crash courses I had given myself in oncology & cancer treatment (etc.), that, this time, I did have some time. As aggressive as my cancer may be, I knew I owed it to myself (and my body/mind!) to seek advice. Since all signs keep pointing back to this route, that of high-dose chemo with tandem stem cell transplants, I feel a sense of readiness. Also, and most importantly, I needed the time from my meeting with my oncologist (February 2) until I met with Dr. Einhorn (April 5) to not only research and explore but also cry, scream, and walk in circles in the woods (literally) to grasp it. In doing so, I unblocked and addressed some of which I didn’t have time to deal with initially when I was first diagnosed. Looking back, I am thankful for this time. Not only did I get to explore and look into the vast world of alternative therapies (clinical trials, studies, etc.). But I also had the pleasure of meeting (by phone, e-mail, or in person) some beautiful folks. On top of this, and perhaps most importantly, I got a better look at some of the emotions I “didn’t have time” to address before.
Anyways… those next steps, the preparatory stages, are even more complex than the (stem cell transplant) procedure itself, or so it seems. I suppose this makes sense, being that the very nature of a stem cell transplant (2 transplants in all) is so involved and brutal on the body that there needs to be adequate preparation. It’s not just relatively basic and seemingly simple stuff, like having my dentist sign off stating that any routine work has been done in their professional opinion is that my teeth are fine and ready, etc. It’s more timing and lining everything up so that it all is methodically prepped and in place that, like clockwork, it follows a pre-determined, pre-planned, pre-mediated schedule with such exactitude. I’ll break it down by posting updates as things move along.
Right now, the plan is to receive a single infusion of Etoposide on May
5th. Etoposide is a chemotherapy drug. I received it in various regimens during my initial treatment. The idea behind a single, stand-alone dose is to push the body into generating white blood cells to initiate a sort of overdrive in production. This is the body’s natural response under normal conditions while undergoing conventional chemo. Even though etoposide has cancer treatment and maintenance “benefits,” we’re using it to jump-start white blood cell production. After a two-day pause, just after the etoposide has flushed from my system and right when my body is in white blood) cell production, I will start giving myself daily white blood cell booster injections. I had these before; however, this was after the week of cisplatin-based therapy when my white blood cell was deficient & dangerously so. After 10 days of forcing my marrow into overdrive production, I’ll go in for harvesting.
Before high-dose chemo, which destroys my marrow, harvesting is done so there are adequate platelets to replenish that which is killed off by the high dose of chemotherapy.
Currently, all of these procedures will be done at MGH. I won’t be inpatient until I start high-dose chemo, as this will require a sterile, germ-proof environment.

Tomorrow, March 13, 2017, I will begin salvage chemotherapy (AKA “2nd line chemo”). I had my “Smart Port” placed on Wednesday. Initially, I was scheduled for a PICC line, as with prior treatment, but the port requires much less maintenance.
I spent the better part of this past month researching alternative routes. Naturally, more chemo was the last thing I wanted. … but this is it. Yes, there are phase II or II studies, but as such, these wouldn’t be covered by my insurance. Also, since some are still in the relatively early stages of development, the outcome is even less specific than salvage chemo / high-dose chemo/stem cell transplant.
I am trying to refrain from looking that far ahead.
I have to begin with this option, at least. Trust me; I was tempted to buy a one-way ticket to some random, far-off country. I still entertain this idea in daydreams – I won’t lie. However, I must at least begin this, try it, and hope for the best.

This fun-looking piece of facial equipment & headgear is not for a new sport but rather to keep my head entirely immobile while the procedure (stereotactic radiation, or SRS) is being performed. This fashionable piece was constructed a few weeks ago when I went down to have an updated MRI (used for planning the procedure), to have a “bite-block” (dental mold) constructed, along with a fancy, net-like structure that was formed to the back of my head. … Then, this elaborate gadget, which I’m sure was used during (the) inquisition, was bolted to the table.


I found the contrast between these two photos so striking! It is truly amazing how quickly the body begins to heal and repair. Even while my old hair was still falling out, I could already start to see new growth. There is a difference of about 1.5 months between these two photos.
Though my physical body is well on the road to recovery, the emotional and psychological aspects of my being are encountering new hurdles every day.