PTSD

A few days ago, I decided to check my temperature. I was sniffling, probably due to seasonal allergies, but I was also concerned I might have a cold after taking my temperature, which rested nicely at around 98.6F. I took out an alcohol swab to wipe the end of the thermometer.

Immediately after removing the single-use swab from the packet, the pungent aroma wafted. Shaking almost uncontrollably, I made my way unsteadily to the foot of my bed. There, I continued to tremble, a jittery sensation as though I had consumed too much caffeine. My body warmed, almost a flushing feeling. My knee-jerk reaction in such a situation is to reach for an Ativan.

I was worried I might be too unsteady on my feet, so I chose to remain seated. My reaction, which I now understand to be a “trigger,” was activated by the smell of the alcohol swab. I felt nauseated while sitting on the edge of the bed, but I tried to calm myself by focusing on my breathing and posture. I’ve been practicing this mindfulness technique with the help of my therapist in such situations. Although I have Ativan as a backup, I don’t want to rely on it constantly. I managed to breathe through the intense anxiety, and slowly, it began to dissipate. However, it was followed by extreme fatigue, as usual.

While at Mass General, I had my temp taken regularly, every time vitals were taken. After this, the nurse on duty would wipe the thermometer. It was sterile, just like everything else in my isolated room. So great was the need for precaution that for both my transplants, I saw only the eyes of the nurses, doctors, and visitors as surgical masks shielded their faces. It is tangential, but it does illustrate the necessity for sterility and the regular use of alcohol swabs and other such disposable cleaners.
I have had numerous experiences such as this: legs shaking while at a clinic, nausea during routine blood work, and extreme panic while in an MRI machine. The list goes on and on and on…

I have strayed away from the term “Post Traumatic Stress Disorder,” though I am not sure why. In many ways, I thought it was reserved for people who had experienced events that were far more traumatizing. I also didn’t want to label it, especially that one. I didn’t want to see myself as traumatized. I didn’t want to be in that place. When I was first diagnosed, I hoped to go to the clinic for a few months of treatment and then return to my everyday life. Admitting that I was traumatized would mean needing more treatment, not physical therapy, but rather addressing the ongoing effects of cancer once the initial battle was over.

My psychologist and I have spent numerous hours both addressing aspects of trauma, how it looks and feels, etc., and also skirting the subject altogether. We’ve danced around it, so to speak, but also avoided entirely that which has been glaring at me, lurking, waiting for me to address it and growing larger each day I didn’t.

I thought of trauma as something that held someone back, something that was fixed in a specific time/place. I thought it was an event that never released its talons, rendering someone helpless & forever there, reliving the past events. I didn’t want that. I am embarrassed to admit I thought I was too strong. The idea above, that of strolling into the clinic and strolling back out after a few months, was how I saw myself. After the completion of my second stem cell transplant, and I was a few days away from being discharged, my oncologist said, “Well, you’ve really trooped through these!” That was me, the warrior. I only let my guard down in front of a few select nurses. I held my tears back until I was in the bathroom, supposedly showering; I’d turn on the water and then sit there crying. At night, I would slip into weird, psychedelic dreams, from which I would wake up moaning, curled into a fetal position, clutching my stuffed animal with such force my fingers would ache the next day.

This is fear. This is pain. This is trauma.

I see the label of PTSD as synonymous with being stuck somewhere in the past, reliving it over and over. The truth is, I have barely, if at all, even begun to let myself do that. To relive and work through an event(s) of significant trauma, pain, sadness & anger is, in fact, stronger. When an alcohol swab sends someone into a tailspin, into a place of panic because of the memory it holds, it is evident that something needs to be addressed, something needs to be unpacked.

I have been told that life post-cancer treatment is the most difficult; it is when the real work begins. It is when things rise to the surface and demand to be addressed. If not, they will have their talons firmly fixed into their prey, and one will be held there forever, somewhere in the past.

I’m not going to die…

I’m not going to die, at least not yet.

When my oncologist said, “There is some swelling around the former tumor in your head. This might be the tumor waking up, but we’re not sure right now.”He then mumbled something else, which now escapes my memory, as things do when you’re told such news. Then I mumbled something in response, neither of us wanting to address reality, just mumbling a language that we both agreed upon but neither spoke fluently.

I had several days to mull this over in my mind. It was the longest several days of my life. I played out every possible scenario, walked them all to the end of my imagination, and then started with a new possibility and led that one down the same road. A tumor that had potentially “woken up” and presented with edema (swelling) around it.

Sure, here is the revised text:

I found myself constantly thinking about death. Despite being told that my body could handle more chemotherapy, I questioned whether I really wanted it. After undergoing extensive chemotherapy, did I want to endure more? In addition, I was still dealing with numerous chemotherapy-related issues such as neuropathy, tinnitus, dizzy spells, extreme fatigue, memory problems, slight speech impairment, nightmares, anxiety, and depression. Could I really handle more? Moreover, would additional chemotherapy be effective? Would it only prolong my life without actually curing this disease?

The day before my MRI, I sat on our porch, basking in the beauty of the world around me. The gentle buzz of bees filled the air as they industriously collected pollen from the vibrant flowers. Watching their instinctual knowledge of which blooms were nearing their end was fascinating. I was struck with the realization that we are on a ceaseless quest to evade the inescapable fate of mortality – even more so, the recognition of it.

I truly and honestly looked at death in that glorious sunshine on the porch amidst the bees and butterflies. It wasn’t some philosophical idea, some existentialist pondering, but a cold-hearted fact of what I thought was fast approaching. For the first time since the beginning of all this, since my seizure in Chicago to the most recent comment made by my oncologist about a tumor possibly waking up, I felt okay about it. I felt Okay about the possibility of dying. More importantly, I felt at peace with it.

Even now, writing the words is hard to fully express. Words fall so incredibly short. It is not that I was resigned or apathetic. It wasn’t that death was a welcomed reprieve from the madness of my life that, when it finally arrived, I would ask, “What the fuck took you so long?” It’s that death, the possibility of dying, the likelihood that it would arrive soon, graced me with a profound inner peace, one that I have never before felt in my life.

I didn’t want to move. I didn’t dare shift my gaze out of fear that this would disrupt the sensation and overall feeling I was currently blessed with.

“Hi Jeremiah, this is Dr. _; it looks like the swelling is due to necrosis, a cellular death that can occur after radiation. We’ll just keep track of it; I’ll schedule you for an 8-week follow-up. I don’t think surgical resection is needed, but I’ll put you in touch with a neurosurgeon, and they can go over that with you.

… and that’s it, necrotic tissue causing swelling.

There is a lot of work to be done now. One year post stem cell transplant allows for little breathing room, but that’s plenty for me — that’s more than enough. The real struggle now is with my mind and heart; the PTSD, anxiety, etc., will just take time and patience and love — self-love especially. The level of peace, however, and the acceptance I felt on that day, and still feel now, will go a long, long way in my emotional & psychological recovery. In using the metaphor of one of my latest posts regarding my feeling of helplessness & exhaustion being like the crashing waves under which I’m struggling to stay afloat, I can touch the sea floor now. Also, the land is clearly visible, and the tide finally works in my favor.

A reminder of the physical journey

Graphic Image Warning: The following photos contain post-surgery images and may be disquieting for certain viewers.

When I initially faced a recurrence of the cancer I thought was gone, I noticed how the faith I had in my own body seemed to slip away.

It was easy enough to feel uncertain about my physical being after decades of perfect health, only then to face an advanced cancer diagnosis. This level of instability, of uncertainty, intensified greatly when, feeling as though I was slowly regaining my emotional and psychical equilibrium, to be told, ‘a nodule on the right lung has grown.’

One thing is certain, I must merely look at the hurdles, obstacles, and setbacks thus far to begin to regain this sense of faith in myself, in my being, physical, emotional, etc., even on a week-by-week basis, the ground gained during these “rest” periods, is indicative of how willing my body is to heal, to try…

I have had too much on my mind recently to consider the resection of the lesion in my brain that took place towards the end of April (2017). in the grand scheme of everything, this is so recent; it feels like yesterday that I was awaiting the surgery set to take place the following day. However, looking back at everything since this operation and how much has come to pass… it feels like a lifetime ago.

My sister recently asked for an updated photo of the scar from the surgery. She was here during the operation and remained for a few weeks afterward to help in any/every way possible. Since her return to the West Coast, she has been keeping tabs on the healing process. To her, this is a clear sign of my physical ability to heal and recover. With so much to do, I wasn’t really considering it and, in fact, was steadily moving onward to the next task, the next form of treatment, etc.. the scar itself was another reminder of a setback I faced in this lengthy ordeal, and I was happy to move on and get back on track.

Today, when documenting the scar for her, I couldn’t help but pause and study the barely visible line running down the side of my head. In this moment, it was the first time i saw it with a sense of awe and gratitude. No longer was it an indication of a setback or a crude reminder of yet another hurdle in the path. But rather an indication of the healing process and a reminder of the physical journey to regain that sense of center.

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?

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.

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.