The lesion

I should know this by now, but I don’t’; things change very quickly– alarmingly so.

The other day, I noticed that typing with my left hand was challenging. It wasn’t easy to access specific keys. Later that day, when attempting to play guitar, I again noticed that the fluidity with which I usually fingered the chords (using my left hand) wasn’t present.

The following day, while driving back from an appointment, I lost complete mobility in my left arm. Unsure if this was a seizure, a stroke…, or a clotting issue, my sister took me to the ER. As most of my ER stories go, they did several tests, the first of which, after vitals, was a head CT scan. What they discovered explained the loss of mobility/motor function in my left arm – a 3.2cm lesion on the back rear (right) lobe in and around the parietal and occipital lobe. (this is what I’m piecing together from the various doctors I’ve met. still trying to grasp the facts.) My MRI on Jan 30 showed no sign of this (what is assumed to be) metastatic spread. Unlike the other brain lesion that was dealt with using solely stereotactic radiosurgery (SRS) in early October (2016), this one will initially be surgically resectioned, and then SRS will be used. The main reason for that is its size.

This will most likely push back the stem cell transplant a few weeks or so, considering the healing time and then the radiation therapy afterward. That & this new and particularly aggressive/fast-growing brain met seem most urgent.

The surgical resection is scheduled for tomorrow, Apr 30, 2017.

Mystery to reality (a stem cell transplant)

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.

“Dr. E.”

I’m off to see the wizard, the wonderful wizard of… Indianapolis?

When I was first diagnosed with testicular cancer, I had heard very little about it. Like many, I knew of Dr. E in connection with Lance Armstrong. Even when I told people, the most common response was, “Oh yeah, didn’t Lance Armstrong have that?” Yes, he did. However, had he been diagnosed a few decades prior, the outcome of his battle with testicular cancer might not have been as positive as we all know.

After my diagnosis, I read everything I could about testicular cancer:

From survivor stories to medical journals to crazy, borderline conspiracy theories on why it (cancer in general) exists. I wanted to know – I needed to know. That is my nature, and, admittedly, my curiosity is sometimes to my detriment… it is, at the end of the day, who I am.

Regardless of where my search led, one name kept appearing: Dr. Lawrence Einhorn. Why? Because he changed the game – no, seriously! Before Dr. Einhorn, a testicular cancer diagnosis was essentially a death sentence. He revolutionized how it was treated, and today, oncologists jokingly reassure patients, “If you had to choose one type of cancer to get, testicular cancer is it!” Yes, it’s a strange thing to say. But testicular cancer boasts such amazingly high cure rates, in large part to Dr. Einhorn.

Many people in various support forums and online communities told me I had to write to “Dr. E.” So I did. On Saturday, I sent him an e-mail. It was brief and to the point, highlighting where I was in my journey and that I needed his advice. See, when I was first diagnosed, I handed over the keys, for lack of a better term, to the oncologist. I was sick, very sick, and I put my faith in my doctor and his team. When I was faced with a recurrence, I started to wonder a lot. That is NOT to say I lost faith in the doctor treating me – certainly not! I respect my oncologist’s opinion and genuine care for me very much.

However, I also started to wonder about his approach to dealing with what was being labeled a “recurrence” of the same cancer/germ cell tumor.

When I wrote to “Dr. E.” I expressed these worries. In a straightforward, almost clinical way, I put forth everything from my initial seizure to the recently discovered growing nodule in my right lung.

About three hours after writing to him, my phone rings. “Yes, this is Lawrence Einhorn. May I speak with Jeremiah Ray, please?”

Two days after our phone conversations, I told my nurse, who has to sign off on my treatment, that I will forego chemo this week (what would have been my 2nd week of “salvage chemo”); I’m gathering every a single bit of medical data about my case I can gather on such short notice, having yet another CT of my chest (per Dr. E.’s request for comparison), and booking tickets to Indianapolis.

What I want is reassurance. I want to know that my steps are the right ones. I don’t want to find a fountain of youth or be promised to live until a ripe old age. More and more so, I believe in the here and now. And, here and now, I want to know that we’re not just shooting in the dark hoping to hit something. Here and now, I want to know that the highly toxic chemicals I’m subjecting my body to are the right ones. I want to make an informed decision about my future.

I want the scale to tip: more answers and fewer questions.

What other word is there?

It is hard to imagine that one year ago today, I was hospitalized. It wasn’t a year ago that I was diagnosed, no. It was a year ago that paramedics picked me up after losing consciousness in the middle of the street after having a seizure.

I was supposed to meet a friend in the park to soak up some sun.

A friend with whom, over the past few weeks, I was growing closer and closer. You know, the type of “closer and closer” that makes one all giddy, blissful, daydreamy, etc.?

I can still remember that morning. That’s the blessing and curse of a life-changing event, at least in this case, everything is highlighted, stands out, everything is…

Is remembering my way of righting a wrong? Is it to replay it over and over to understand everything? To replay to capture the tiny nuances of the morning and then filter the following 12 months through them to make sense of everything. By “it,” do I mean cancer?

By “it,” I can’t just refer to the seizure; it’s not so simple. I wish it were so simple.

I have heard of “survivor’s guilt.” Survivors of cancer, for example, feel a sense of guilt because they did survive while others, many others, with the same cancer, staging, treatment, etc., did not. I am not at that place simply because I am in treatment again.

My journey isn’t in that place yet. However, I feel a sense of guilt for being diagnosed, for being sick. This word, “guilt,” even written, doesn’t work. But what other word is there?

“Sorry, this turned out like this…” was what I said in the text I sent from the hospital to the woman I would meet in the park, the one I was getting all heart-eyed and giddy about. What other word is there?

“Jeremiah, do you know where you are? Do you know what year it is?” Those are the questions asked by the paramedics. I could feel the ambulance picking up speed as it transported me to the hospital. I could hear one EMS personnel on the radio describe me.

I remember thinking about his description of me, a total stranger, and finding it fascinating.

“Jeremiah, do you know what year it is?”
“No, I’m sorry, I don’t.”

Again, “sorry” isn’t the right word. What other word is there?

In the weeks and months to follow, there was (and is) this underlining “I’m sorry”… even though “sorry” doesn’t describe it, just as “guilt” isn’t entirely accurate either.

This is part of the package. The grab-bag that is life… This feeling exists regardless, right? I place “sorry” on it because I lack the vocabulary to express an emotion I still can’t define.

Doesn’t sorry work when I see the tired and worried look on the faces of those closest to me? When I feel their anger and annoyance and pain… Doesn’t it work when I step from the shower and notice various scars that have yet to pale with time? It works, right, when I see my belly bloated from drugs, yet my arms losing muscular definition acquired from dozens of summers working as a laborer? Isn’t sorry appropriate when I can walk a mere 1/10 of the distance I usually undertake in the woods because my leg muscles shake if I go too far?

What other word is there?

“2nd line chemo”

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.

Headgear

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.

SRS (Stereotactic Radiosurgery)

Oct 11 (2016) marked six months since beginning treatment. This time has gone prolonged and alarmingly fast.

When I returned to Maine to begin treatment, the trees were covered in tightly wrapped buds. I watched spring arrive – of course, we’ve all done this. Though, because of the long days of chemo, I was hyper-aware of time and its passage. The buds on this particular maple tree seemed to tease me and almost prolonged their encasement, knowing how desperately I wanted spring – greenery – warmer and longer days…

Today, I noticed the leaves are falling.

Here are some photos of the SRS (Stereotactic Radiosurgery) procedure. Looks like a science-fiction film set.

I’m feeling exhausted today; a lot has happened throughout the week. The stammer, which developed well before the SRS, still lingers and makes talking exhausting.