Tag: mass general hospital

Patience (the ancient tree)

I have dreamt dozens of times that cancer has returned. Not testicular cancer, not necessarily, just cancer in general. 

The other night, I awoke, and, having fallen asleep on my arm, it was numb from the shoulder down. This, too, has happened numerous times, but I am always so shocked and horrified that I sit straight up in bed each time, flop my numb arm over my lap, and await as it comes back, as it awakes as well. I hold my breath. In the middle of the night, I sit in the dark, cradling my arm and waiting. When I feel the gentle tingling sensation return, the soft pins, and needles that signify it has awoken, I lie back, relieved. It is then, and only then, that I realize (the) cancer hasn’t returned. Another lesion hasn’t formed in my brain. I don’t need brain surgery. 

Incidents such as this are not uncommon. This is but one example…

This fear lurks; I feel as though sometimes it is stalking me. Other times I know that, at this moment, I am cancer-free,  it is out of my system and a thing of the past. I am torn between these two worlds of quaking fear and joyful bliss. 

I recently had a conversation about this very feeling, about how I feel that I am often shadowed by cancer, that it is pursuing me. I was unaware of its presence upon initial diagnosis. When struck by the recurrence, I was completely oblivious as with the first time. So much so that when my oncologist told me it had returned, I was in denial. Naturally, anyone would be dismissed, as this is the last thing one wants to hear after being treated once. When I was informed, I felt 100%; my body felt so strong and healthy. I wouldn’t believe it – I couldn’t accept that it had returned. Regardless, it had, and both times it snuck up on me and pounced. I blinked, and it was upon me; claws sunk deep, and I was helpless.

I suppose this is just something that lingers. How long is uncertain. Perhaps it will always shadow me. I hope it will do so in such a way that it is not hunting me, or for that matter, haunting me, but a reminder of what has come to pass. 

Patience! I need more patience with myself as I move along this path. 

 

i cannot tell 

which is more patient 

the tree

like gnarled old fingers

sun-beached and 

long since passed

or the days and nights

which move around it

we witness the blue sky

so rich and clear

and mistake our need

we forget tolerance  

we say

“get out of the way 

you old tree

I want to see the blue sky”

but the tree

is the gentle one

by day

it marks the earth 

with the movement

of the sun

across the sky

not rushing it

letting it be

moment by moment

and at night

it stands 

almost sentry-like

keeping watch 

waiting

it never says 

“you are gray today

bring back

your blue sky”

if it is unable

to mark the earth

as a sundial would

it just waits

gnarled and old

like it was yesterday

as it will be tomorrow

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)

3rd anniversary of my stem cell transplant

This summer will mark the 3rd anniversary of my stem cell transplant! It is hard to believe that so much time has passed since that long and very trying span of time, from June to August of 2017. So much has come to pass; so much growth on a personal level, so much understanding and acceptance, so much physical and emotional healing. 

Even if I look back to just half a year ago I am left scratching my head asking, ‘who was that?’ I suppose this is normal, but I am hyper-vigilant of the passage of time, as I’m sure every cancer survivor is. It isn’t so much that I’m counting every second and rejoicing at every tiny gulp of fresh air I am graced with. No, it isn’t like that. Naturally, I am very lucky. However, I feel graced with, if that’s still the most suitable term I want to use here, with the awareness and shifts within myself. Call it “soul” or “spirit”… whatever word you’d like, I won’t label it so as not to taint one’s vision of how I’m perceiving this “inner” part. 

Several months ago, I was experiencing a nervous breakdown and was admitted to a hospital in France. Really, who was that? I needed that, of course. I needed to bottom out. My body was already working on slowly repairing itself, but I hadn’t yet allowed myself to crash on an emotional and psychological level. My inability to hold on slipped and I did… I crashed hard – very hard. As difficult as it might have been, this was when the shifts began to occur.  

3 years ago, I was watching fireworks from Massachusetts General Hospital’s cancer ward. I tried to sweet-talk one of the nurses into getting me a beer so I could, like a lot of my fellow Americans, sit and sip a beer while watching the display, all the while exclaiming, “Ohh!” and “Wow!” She said no and gave me another anti-nausea med and an ice cream. The fireworks didn’t live up to their hype. I heard good things; a lovely display of colorful explosions seen from the 10th floor of a building overlooking the Charles River. It sounded amazing. Though various buildings obstructed our view, we couldn’t see The Charles. There were perhaps ½ a dozen patients and nurses. It was an interesting and also eerie sight, all of us in masks and gowns; the patients seemed quiet, in that middle ground of toxicity-induced psychedelia and being fully present. I shouldn’t generalize, but I often found myself in this state, always ready for what I am unsure. All of us were tethered to our IV poles, which pumped an alarming amount of chemo agents into each of our bodies or flooded us with other various fluids. The nurses talked amongst themselves, texting and doing things normal people do. I don’t remember the grand finale. The other patients and I left the room with the promised vista of fireworks overlooking the Charles, wheeling their IV poles alongside us. I heard the muffled explosions from my sealed-off room, just a gentle murmur that was barely audible underneath the continuous hum of the air filtration system. 

Every 4th of July I remember this. I remember that room on the 10th floor of Mass General’s cancer ward and the patients wheeling about IV poles, hoping to see a clear view of fireworks but, in the end, not really caring. Or maybe I cared in that way cancer patients care about things that, though they would be nice, weren’t of the highest priority at the moment. Or perhaps, like me, we all wanted to enjoy the goddamn fireworks while drinking some shitty beers and be normal, feel normal… whatever that was at the time. But alas, we all returned to our rooms to resume our treatment or our sleepless nights of nausea and delirium, or the darkness-induced existential terrors, fears, and tears, to everything (everything!) else that takes precedence over fireworks. 

I don’t look back on it now, every summer, every 4th of July, and feel a sort of unease or anger, etc. I feel this reaction with other things, naturally. Other dates are inescapable; those, too, have lost their bite. The day after Mother’s Day 2017, I had a stroke, which paralyzed my left arm, postponed my transplant, and sent me to the hospital for brain surgery. I watched the solstice sun (image attached) lazily creep across the sky from my room at Mass General. 

These are there and solidified in my personal journey and my personal history. They’re not so much pitfalls anymore in the yearly cycle, so much as pitstops that allow me to recess my place within all this and the growth within myself. 

National Cancer Survivor Day

Today is National Cancer Survivor Day.

I have been compiling some comparison photos. The ones of me during treatment, which were taken during my inpatient stay at Mass General, were so hard to look at for the longest time. It is still unnerving. When I upload and then delete photos from my phone these photos, as well as a few of my family, are the ones that always remain. 

In the last several months, I have only been able to pause, look at them, and consider who that person was and what aspects of him still remain. The shift in this ability, that of being able to witness this previous Jeremiah, came after my psychological and emotional hardship experienced while abroad in the fall ‘19. Since then, things have started to dissolve, things that have been carried and dragged too far for too long. Perhaps this is why I can look at this photo with more compassion and kindness. Yes, there is still fear, of course there will always be fear. 

During these years of survivorship, some people have drifted out of my life, as any path to any destination worth arriving at isn’t free of bramble and vexation. Others have grown increasingly closer to me, and in sticking with the path analogy, our comradery has strengthened, allowing us to work together through the dense underbrush that is life.

The elation I felt…

Trigger warning: This post deals with issues such as depression and mental/emotional breakdown.

The word “met” refers to metastatic cancer.

The elation I felt after these recent scans was overwhelming! When my oncologist said that we would move the scans to every 6 months, as opposed to the quarterly schedule we had maintained since my stem cell transplant, I cried. When I have broken down in front of him before, which I have done on numerous occasions, it was due to negative news or concerns he had. This time, however, the tears resulted from pure joy and happiness!

I was shocked when he told me this, completely speechless. When he entered his office, I braced myself. The 2nd to last scans performed in August revealed “nonspecific nodular change” on the largest pulmonary mets. Though things were “stable” then, it was still cause for worry.

This is the area where the recurrence was detected in early 2017, so naturally, it was worrisome.

I didn’t tell anyone. Not a soul. I said things were stable, but I didn’t mention the change.

We would “keep an eye on it”; that was the plan. We’d see how things looked in three months and how they appeared after the following scans. These were the parting words after my appointment in August – we’ll just wait and see.

Three months! For three months, I wondered what might be occurring within my lungs.

Those who talk about “being present”, living in the “now”, etc. are full of shit. When you’re told that there is a slight change in size in one of the mets on your lungs and that it might be growing, but we’re not sure, so let’s wait three months to be specific, you’d be leaping into the future and entertaining every possibility imaginable. Anyone would be anywhere BUT “here and now”; their minds would be bedeviled by worry and fear. Even Siddhārtha Gautama would be shitting himself.

Several months ago, an MRI revealed that there was potential growth in the met in my brain, the one that was treated with radiation therapy in 2016. It turned out that it was just swelling and that there wasn’t any growth. My mind kept reminding me of this incident and that perhaps the supposed growth in one of the lung nodules was also the result of swelling…

I was informed of this “nodular change” on September 16th, the day before I departed on what I had hoped would be a nice trip abroad for my birthday. The tickets had been purchased well in advance, and I was going regardless of the news I had just received.

I thought taking a short vacation would be nice. After hearing the news about the nodule change, I felt a sort of urgency to leave – in fact, I wanted to run away and be as far away from everything as possible.

While abroad, I began to “live it up”: lavish AirBnBs & private hotel rooms, extravagant meals at swanky restaurants, fancy new attire for my nights out, etc. My mentality, as morbid as it might sound, was, ‘fuck-it, if this is my last go-‘round, I’m sure as hell gonna enjoy myself!’

I prolonged my stay. I didn’t want to be home; I didn’t want time to sit and think about the possibilities and entertain the what-ifs that have plagued my thoughts since my initial diagnosis.

Naturally, all the fancy hotels and fine dining couldn’t keep the torrent of thoughts and worries at bay. They were creeping in. I was losing sleep, and, as a result, my already fragile psychological and emotional state began to further weaken. I didn’t recognize who I was becoming; I started lashing out at people, hurling accusations at friends, displacing the intense feelings of anger and sadness. I couldn’t bear the thought of a recurrence, of further treatment, and was spiraling out of control from the fear and stress I was experiencing. On top of that, amid this storm sweeping me away, I couldn’t find the words; nothing made sense, and I felt alone.

I just wanted to be held. This desire kept returning to me. This need and wish to be wrapped up and held securely was almost childlike. I didn’t want to dump the emotional weight of my situation onto anyone… I just wanted the comfort of prolonged embraces.

The stress and fear was too much. It ended with a hospitalization in Rodez, France. I experienced a nervous breakdown. After 5 weeks of traveling and doing my utmost to push away the anger, fear, and sadness that had sprouted from recent test results, I fell apart. Touching the scar from my craniotomy set into motion an avalanche of emotions, the likes of which I was entirely unprepared to manage.

My mother was the first person I told. I only spoke about it because the report from the most recent CT results mentioned the stability of all pulmonary nodules, including the one that presented with nonspecific changes 3 months prior. This would have been noted in the findings if it had been grown.

She didn’t understand why I didn’t tell anyone. “It’s too much stress for you, “she said, “you shouldn’t have been alone in this!”

I was alone with this knowledge and knew that a change had been detected in the August scans. I didn’t want to say anything because I didn’t know how. I am not good with communication; I have repeatedly repeated this. It isn’t that I’m not opening up, as some have told me; I just find spoken words strange and cumbersome. They don’t align themselves with my thoughts or emotions. Throughout my entire journey with cancer, I have felt at a loss for words. Even in writing updates and maintaining my blog, I have thought that the words I choose are so close to expressing what I need… but fall short every time. They lack the substance required for specific emotional experiences and psychological states. Before diagnosis, I could easily find the words needed to articulate my feelings and express myself. After being discharged from the hospital in Chicago, after being told I had cancer and that my life had been drastically altered, I immediately discovered that words no longer added up. Initially, I thought it was due to several things: stress, fear, seizures, seizure meds, and sleep deprivation. I considered these while packing my belongings and preparing for my return home for treatment. I was tossing clothes in bags and ditching possessions, all the while I was trying to understand why I couldn’t connect my thoughts and emotions with the words I so greatly desired. This ineptitude has continued and hasn’t diminished with time.  

The knowledge that everything is stable has brought an immense feeling of peace that has evaded me for far too long. The serenity that has arrived has lessened the pressure I have been putting on myself in many aspects of my life. I want nothing more than to find the words needed to feel a sort of connection with others. Perhaps one day, they’ll arrive when the dust from all this has finally settled. This is the area where I live in the “here and now,” where I am fully present. I’ll be with it daily, moment to moment, and I hope the words will eventually harmonize with my thoughts and emotions.

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.

Sweet, late August Maine air

Tomorrow, Aug 25, 2017, exactly 3 weeks from the day of admittance, I will be discharged! Well, this is the hope, and as of right now, as long as a fever doesn’t appear out of nowhere overnight, I should be home tomorrow evening. I want to fall asleep listening to the crickets breathing in the sweet, late August Maine air.

Over a week ago, when I wrote about the ability to, once again, enjoy a cup of tea, I thought that I was on the mend and that the worst of this transplant was drifting away into memory. I was very wrong. When all my counts finally bottomed out, I was in the worst possible state — for days. I assumed this transplant would be much like the past, but I just kept feeling worse and worse post “day 0” (the day I received my cells back). There are several reasons why this transplant hit me harder: different chemo regimens, shorter recovery/rest time between transplants, etc. All I know is that I hope never again to be even close to some of the horrific states I was in over the past several days. One night, I was not sure of the time; I found myself curled into a fetal position and moaning continuously. Another night, I asked the night nurse if I was dying. I shudder to think of anyone in this state of mind or body.

If everything goes according to plan and I am discharged tomorrow, I will return for follow-up labs (blood work) and a few other tests in about a week.

But, for now, this appointment is very far from my mind. Right now, I merely want stillness, rest — deep, nurturing rest. 

…”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.