Tag: testicular cancer

Hair loss / Hair return

October 2017

I have witnessed my hair fall out three different times due to chemotherapy treatment. The first time was quite a shock. I looked down one morning to see hair covering my pillowcase. But the real shock came when realizing how quickly it happened, how quickly the chemicals flooded my system and started killing off cells. My very first “conventional” round of chemo was administered on a bi-weekly basis, if I remember correctly. This gave me a week in between to rest and recover before the next round. Because the timing of everything was so fast, I started the first round of treatment almost immediately after returning home to New England and, as such, had a full head of hair and a beard. Some people cut their hair close and shave preemptively before treatment, but I didn’t have time. Anyway, on the first off-week, the first week between cycles, I awoke one morning and discovered my pillowcase covered in my hair. That same morning, I stood in the shower and watched as the water deepened due to the clumps of hair forming in and around the drain. i didn’t know then that i would witness this shedding (a term i’ve come to enjoy & one i find apt) another two times very shortly.

The sensation of losing one’s hair, especially at the rate at which it falls out due to chemo, is unnerving, to say the least. Hair has always held this sacred energy; it connects to the past and holds information about various aspects of our lives. During treatment, when it begins to fall out in fistfuls, it’s hard to rationalize this loss by saying, “It’s the chemo doing its job,” when one understands it to be the result of the indiscriminate killing off of cells. It doesn’t necessarily target rogue cells or cells that have gone haywire and/or rapidly dividing cells. This has always been the thing that has frightened me about chemotherapy treatment — it is simultaneously saving someone and killing them.

A closely cropped head of (already thinning) hair is the norm for me. However, when the eyelashes fall out and the eyebrows thin to near nonexistence, it is hard to look in the mirror and not feel alien within one’s body.

Just as I’ve witnessed the loss of my hair 3 different times, I’ve also had the pleasure of watching it return. And, in all honesty, it is a pleasurable experience to watch such a seemingly spontaneous rebirth occur. This time around, the timing couldn’t be better. As the days become shorter and cooler, I’m slowly sprouting a new beard & checking daily if the fuzzy growth appears & thickens atop my head.

A reminder of the physical journey

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

October 4, 2017
October 4, 2017
post-op & before discharge from the hospital (May 2, 2017)

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?

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. 

High-dose chemotherapy with (tandem) stem cell transplants

Where and how do I begin explaining high-dose chemotherapy with (tandem) stem cell transplants? I have been considering how I should go about describing the process. However, I wasn’t even sure I understood it correctly.

In my case, and this might be the same for other patients, I am not sure, but upon admittance, the clock starts at “day -5” (day negative 5). so “day 0” is when I return my stem cells. Days -5 — 0 are, as you might have guessed, chemo days. By this, I don’t mean normal outpatient days that, in my case, lasted several hours, depending on the regimen. No, I am talking about round-the-clock infusions, IV bags of chemotherapy drugs that run for 24 hours and then are switched out for new bags that run the same length for days and days. The intention, with such long days filled with heavy-duty chemo, is to destroy the current stem cells/marrow & annihilate the existing cancer and then replenish my system with untouched (by high dose chemo) stem cells from which my body will reconstruct itself literally from the ground up.

Along with the continuous stream of chemo, I have also been receiving liters upon liters of fluids. This is to prevent any damage to the liver, kidney & bladder. However, it is often uncomfortable, and, according to the nurse, I am currently retaining 8lbs/3.6kg of excess liquid. Needless to say, I feel uncomfortably bloated.

Between days -2 and 0, I will just be receiving mesna, a chemo protectant, and more fluids to continue to flush my filter organs. 

2nd round

Tomorrow, August 4, 2017, I will return to Mass General Hospital for the second stem cell transplant. I am not ready; I want more time to rest and eat good (nonhospital) food to be “normal.” I don’t want to be inside for 2+ weeks, confined to a hospital floor, gazing longingly out of the windows, trying to imagine what the day feels like from a room that is kept at a constant temperature. In the back of my mind is the repetitive voice of reason explaining how this is needed and how “it’ll be over soon!” etc.

My beard is starting to grow again; it is darker and thicker in some areas and others, just thin indications of hair, translucent almost. Once more, I am surprised at how fast cellular regeneration occurs within the body and, as before, how willing it (the body) is to keep going and growing despite the near-constant bombardment of chemicals. I feel bad that, from tomorrow onward, my body will be fed these toxic chemicals and again will shed the newly grown hairs as the (chemo) agents destroy cells — both good and bad — all cells.

Again, the voice tells me it is for the best, this is about healing, “you’ll be well soon,”… etc.

When I was just a small child, I played in the woods near our house. For some reason, I consumed some berries growing wildly in the forest. As innocent as a child is, I just thought they were harmless and would taste yummy. When my mother heard it, she immediately called the doctor, who had the pharmacist deliver (yes, they delivered!) ipecac syrup. This is used to induce vomiting and administered if something potentially poisonous is ingested. Since my mother didn’t know what type of berries I had feasted upon, she assumed the worst. Naturally, she felt horrible when I vomited up what I could barely remember as a colorful, Pollock-like splatter of colorful berries (amongst other things recently consumed). I now feel the way my mother must have when she was trying to explain to me why I would feel poorly – and that it was for my safety – and that she was sorry – and that she loved me.

At night, or when first waking, I scan my body mentally from head to toe and envision myself embracing my own body as I explain why this must be endured – and that I’m sorry – and that I love it.