Perhaps this is survivor’s guilt.

Our situations were identical in almost every way.

He was diagnosed with testicular cancer. His staging was the same as mine. He, too, experienced a recurrence that presented as a brain lesion and opted for a stem cell transplant.

This is where our paths split apart. Shortly after his high-dose chemo treatment commenced, prepping his body for the transplant, he became increasingly confused and disoriented. After sets of scans were performed, it became evident that, though the heavy rounds of treatment were well underway, several more lesions had presented themselves in his brain. The decision was made to stop treatment and return home, enter hospice care, and be around loved ones. Shortly after he decision was made, he passed away.

Even in writing this, I don’t know where to begin opening up my emotional state regarding his journey and mine and where they veered off and split from one another. I shudder thinking about the fact that my lesions could have multiplied, too. Or, for that matter, the one that did present itself could have been in such an area that it was deemed inoperable, leaving me with more complications than just a stroke and a paralyzed arm. (“Just a stroke…”) What damage could my tumor have caused had it been slightly to the left, to the right, etc? Was I naive to postpone my 2nd round of salvage chemo and head out to visit Dr. Einhorn in Indianapolis to get a second opinion? Was this delay dangerous in such a way that… it’s too much to think about.

These questions haunt me. They wake me in the middle of the night. Even more so is one I can’t escape asking repeatedly: why am I here and he isn’t? Why am I alive and he … and he isn’t?

I never understood survivors’ guilt. I had heard about it but never truly understood it. Yes, on a larger scale, anyone who survives cancer thinks about all those who haven’t and, in one way or another, has that feeling. In most cases, guilt might be too harsh, but this particular scenario is apt.

I loop my posts back around. With my last sentences or so, I always seek to return to the overall idea. Is this good writing? I’m not sure. I do so to keep everyone along the way. My writing tends to drift a little far out, so bringing things full circle will hopefully lead people to say, “Oh, now I understand why he wrote…” However, with this post and the subject matter herein, I can’t. How do I bring this back around? What closing line or thought can I inject here? Nothing can sum this up or deliver on one’s need for coherency as none of this makes sense…

Perhaps this is survivor’s guilt. Maybe it isn’t so much about feeling remorse for those who have passed at the hand of this insidious disease, but rather the inability to make sense of it, to articulate it to ourselves and others. As with this post, I want to bring it back around so it feels wholly desperate and there is some understanding to accept the madness of this life and the injustices that rear their heads. But I can’t. Everything is left hanging, nothing but loose ends, dangling strands that I keep tugging at…

Be well on your journey, Alex

June 13, 1994 ~ June 30, 2020 (age 26)

The irony of April 1st

I went to bed last night, frightened of how I might awake today.

April 1st is the date I was diagnosed with testicular cancer in 2016. It is hard to forget such a date, naturally.

The irony, of course, is April It’s Fools Day, but no one forgets such a life-altering occurrence.

I awoke relatively early. I did not get up for the day, just remained in bed, not wanting to stir and disrupt the thought that was on a loop in both my heart and mind;

“I’m a f*cking warrior!”

It wasn’t one thing in particular that I was focusing on or directing this thought towards. Rather, it was the years since my diagnosis and all the trials I have overcome!

The image is my Scottish ancestral crest. The motto which circles the crest is Fortitudine, which means “with fortitude” in Latin. I am proud of this and have it tattooed on my forearm. Every day, I recognize that my own fortitude, courage, and bravery are greater than I will ever know!

Image credit: Unknown

Screenshots

I have saved many screenshots of text conversations over the past few years. I was sifting through these today, and they made me realize what I have been working on, what I have been passing through and growing with over the course of 3 years. It is good and very healthy to put things in perspective. I often feel that I need to be farther along, at a different place in my healing process, etc. I see clearly now just how far I have come. These thoughts are still present, some of them make up the core of my being and illness has merely heightened their presence. On the other hand, some seem almost frozen over in their place and might trickle out very slowly as rebirth unfolds. Maybe in this lifetime they won’t fully do so, perhaps the process will carry over… and over… and …

Two years ago

Two years ago, I returned from Mass General Hospital (MGH). My second stem cell transplant had wrecked me; it was brutal. “You really trooped through these!” said my oncologist. Though proud to hear such words, I was out of my mind and ready to be home. I spent the last 3 months in a small, sterile, seal-off hospital room, removed from the world (save for nurses and doctors), removed from fresh air, from direct sunlight… I just wanted to go home!

Initially, I met my oncologist at MGH every week. He was keeping a very close eye on me. Then we met every 2 weeks, every month, every 3 months… I have returned to the care of my oncologist here, in Maine, we currently meet every 6 months.

During this time, I was having scans (CT of my chest, abdomen, and pelvis and an MRI of my brain) every three months. Naturally, having experienced a recurrence just 6 months after the original/initial treatment, every set of scans sends me into a downward spiral of fear, anxiety, anger, etc.

Even now, having bumped my scans out to every 6 months, I am still sent into a tailspin when the time draws near for scans/tests. It’s the same with each round; fear, anxiety, anger. This is common, at least I’m assuming it is, for every cancer patient.

Today, however, two years out from my stem cell transplant, I learned that my CT scans (chest, abdomen, pelvis) are still showing signs of stability!
The peace that has set in with this knowledge is immeasurable!

I feel so very blessed tonight.

Body, Tell Me Things!

Waiting for an MRI or CT scan results is no fun whatsoever. Honestly, there is something about bloodwork that feels worse, more challenging, more painful. Perhaps because of the speed at which labs are drawn and the agonizing waiting period. An MRI, as well as a CT scan, require some form of preparation. Blood labs are quick: in / out / get out. I can’t speak for other facilities/clinics, etc., but there is a lengthy waiting period for results. I say “lengthy” because when you’re pacing around like a nervous wreck waiting on results, even if just for a few days, every second feels like an eternity. I had my labs drawn on Friday, February 1, 2019. So, considering the time delay with the weekend, I might not hear until mid-next week.

When I was first diagnosed, I was asymptomatic. As I have mentioned in numerous updates and blog posts, my only symptom was what I thought was a chest cold (cough, slight wheeze, etc.). When the recurrence was noted, I had absolutely no symptoms – none! At the time, I was shoveling snow off my roof, stacking wood, and going on lengthy treks in my beloved woods. There wasn’t a single indicator that something was even remotely amiss.

I don’t trust my own body. It is a sad thing to admit, but I don’t. I wrote a poem about this shortly after diagnosis, in which I kept repeating the line, “body, tell me things!” I was pleading with my being, physical or otherwise, to give me a sign, speak up, and present to me in waking life or dreams that something wasn’t right.

I know my body will eventually heal. “You are powerful, Jeremiah,” my oncologist recently told me. Without wishing to sound pompous, I know this – I already knew this.

In this manner, trusting my body to heal, I know it will always recover. Even after multiple, multiple rounds of cell-killing chemotherapy, a drenching so great I am surprised I survived my two stem cell transplants after the chemical bath I received during my initial treatments, my body bounced back. But somewhere, somehow, it doesn’t communicate what I need to know beforehand, which is most important.

Body, tell me things!

Germ cell tumors, i.e., ovarian and testicular cancer, are hard to detect. Thus, they have often been called the “silent killers”. 19% of ovarian cancer cases aren’t detected in the early stages of development. Testicular cancer, being in the same family, is very similar. A “chest cold” is the symptom of metastatic lesions throughout my lungs; a seizure was my body finally communicating with me that the cancer had reached the end of the line.

Body, tell me things!

I want to trust my body. I want to know what is going on and developing within me. I am paranoid now. One day, I will exercise, usually in the form of cathartic dance/movement, and the following day my thighs hurt. Naturally, this makes sense; I had been dancing ecstatically 24 hours before. My mind, however, is wondering what else might be there or lurking below the surface.

Body, tell me things!

Sitting here waiting for results, I am in that place of treading water again. My MRI is scheduled for February 5, requiring a long wait. I don’t feel this is a life — no, I know it isn’t. Scans are three months apart. So, for 1.5 months, I have been delighted, I have been resting, I have been gaining strength, etc. The next 1.5 months are a time of wondering… questioning… fearing… dreading, sleepless nights, and days walking around trying to retain what’s left of my sanity.

Body, tell me things!

I want to slip back into that blissful state of nativity. The days, the years, all 33, when a chest cold was just that, when sore thighs resulted from exercise. The years in which I didn’t wake up in the middle of the night and dread the darkness because of all the unknowns it might hold.

Birthdays

Birthdays are always an interesting point of reference to look back at time. They make a good starting place to look at a swath of years and note changes, growth, etc., to take one birthday, jump backward to the previous year, and look at the space in between.

On September 18, 2017, I turned 35 years old. Initially, I was not excited about the approaching birthday as the years from 33 ½ to 35 (from diagnosis to present) were lost for lack of a better term. This was my mentality leading up to the day — that that time was irreplaceable, gone, etc.

There are two ways to view this: as time being lost, with those years and months of being sick and in and out of treatment, or as something relative. I wasn’t even sure I would live to see my recent birthday. During the last round of high-dose chemo, when I was at the lowest point imaginable, I asked the night nurse if I was going to die. Feeling as I did, I was sure I wouldn’t live to see the following day, let alone my 35th birthday, which was only a matter of weeks away. Thus, the relativity of age, years, and time.

I awoke on my 35th birthday feeling more positive and ready — I had lived to see the day.

I’ve been trying to avoid dwelling on the past and revisiting the years before my diagnosis. However, I can’t help but remember significant moments, like birthdays, that were not overshadowed by poor health. Time now feels like it’s split into two distinct sections: before and after my diagnosis. But in reality, time doesn’t work that way; life is a mix of moments and events that all come together. Focusing on the present and fully embracing our current moments is essential. While there are events I wish I could erase from my memory, it’s impossible to pick and choose our experiences selectively. Who would we be without these moments, both good and bad? Who would we be without the nights we thought we wouldn’t survive and the mornings that surprised us by arriving?

…”breezed” through

I had a follow-up meeting with my oncologist at Mass General yesterday. Labs were drawn, and blood work shows that things continue to climb upward. I still need to be careful, refrain from going into public places, and wear a mask. I am (just today, July 14, 2017) one week post-release from inpatient care, so it makes sense.

Things were trending upward, so the oncologist was happy. They think I’ll be admitted for round II in the first week of August. They want to see me again in two weeks, and the blood work then will give them a better sense of where I’m at. As for now, I’m under strict orders to rest and get ready. We spoke briefly about the regimen used in the next round. It isn’t set in stone, but one thing they’re confident about is utilizing an agent with a solid/proven track record of good CNS (blood/brain barrier) penetration. Having already had two mets in that area, they want to ensure that whatever regimen is used can access this region. The options are pretty horrific in terms of toxicity. I left the meeting a little frightened about round II as I was guaranteed to feel this round more intensely than the first. Which, according to the oncologist, I “breezed” through.

“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.