Tests, Tests and More Tests

Most tests I recognized at the time of testing. I have sat through hundreds of tests and exams through school, most of which I knew about ahead of time. Yet there was one time in grade 13 biology when I arrived in class, took my normal seat and watched the girl beside me fumble through some notes. Finally, she closed her books, put them in her desk and said “If I don’t know it now, I never will”. That was my first hint that I was just minutes away from writing a major genetics test with no preparation. That was exciting. It was also the exception.

Some tests have been more subtle, almost invisibly wrapped up in other qualities such as trust. This is aptly demonstrated whenever we are barreling down a two lane, undivided highway at 80 Kph, and we pass someone going the opposite direction at the same speed, with only a few feet between us. We are constantly testing our faith that they will remain on their side of the road and this is neatly disguised as a blind trust that they will stay in their own lane. They also have that same trust in us.

The cancer journey has been filled with new tests as well. Many medical tests, of course, but there have been a number of other tests.

Getting Tired

When I started the treatments I was told that I would start to get tired and eventually fatigue would settle in. I couldn’t imagine that. How is possible to sleep more than usual and still be tired all the time? That has only happened in short periods of time when I have been sick in the past, but not often enough to even remember all that well. Within the first week or two of the treatments I was feeling a bit tired, but it was not an issue. I thought to myself “I got this”. It turns out that I didn’t.

I was still working during the 5th week of treatments, but I was also going to bed by 8:00 at night and sleeping much more than normal. It took an extra boost of energy just to stand up. I started to feel a constant mental fog that made me feel increasingly uncomfortable to even drive. Between the 5th and 6th week, I decided to throw in the towel. I told work that I needed to stay home to recover properly, which they supported whole-heartedly. I hung up my car keys and became a passenger for many weeks.

And I slept a lot.

Pass the Syringe, Please

For the past few years, I have had a goal to weigh 250 lbs by my birthday. I have not even come close to that goal. I have not been that weight for over 20 years, since before I met Sue. A week before the treatments started I weighed 285 lbs. Just over five weeks later, I hit my 250 lb goal, but not in a way I imagined.

Regarding eating, the cancer treatments had hit me from a number of directions. The radiation was doing a great job annihilating my taste buds, ensuring everything  had no taste at all, or if it did, that it tasted like it was flavoured with powdered dog crap. The radiation was also taking a toll on my throat, making it difficult to even swallow sips of water. I simply couldn’t eat. Sue was trying to get me to eat or drink anything. I know I was frustrating her, but it would take me 30-40 minutes to eventually drink one can of Ensure. It was not going well.

I had lost a lot of weight and the staff at the cancer clinic were rightfully concerned. I knew I needed the energy more than ever, but traditional eating with a fork, spoon or even a sippy cup wasn’t the answer. We agreed that getting a g-tube to eat would help fend off this downward spiral.

My weight stabilized immediately once I started using the g-tube. I was still fatigued and sleeping a lot, but now the lack of nutrition was no longer a contributing factor.

I go through a psychological test frequently with the g-tube. Quite simply – what will I wear today, so that the tube is not too noticeable. For brief moments I wonder what will others think. Will they have unasked questions? Will they think I am somehow disabled? That train of thought quickly slips away when my better senses kick in to remind me that I don’t give a shit what they think. This g-tube is for my benefit and that benefit trumps whatever I might imagine what others think, if they do at all.

No Longer Intrigued

I was told about the possible side effects of cancer treatments before starting them: fatigue, ability to eat, dry mouth, painful throat, hearing loss, chemo fog and more. I found it a little intriguing. How would this be possible? Even within a couple of weeks I still found it intriguing. I was seeing early signs of side effects such as taste for a lot of foods changing, but it wasn’t too bothersome.

It didn’t take long for the intrigue to disappear.

I had chemo as well as radiation in the fourth week of treatments. I was getting more tired and I was starting to dread each of the radiation sessions. I wouldn’t feel noticeably more drained after each individual session, but I knew the accumulating effects were mounting up high.

Intrigue had been replaced by a disdain of the process, however necessary it was. This shift put pressure on my ability to keep a positive outlook near the end of treatments. I would put on a positive mask when I left the house, answering “good” or “just a bit tired” whenever anyone asked how I was. I am sure the mask I wore was so thin that many people could see right through it if they chose to.

It was a test to keep positive that I feebly passed in public, but failed frequently behind closed doors. Thankfully Sue was always there to help me with my cycling psyche.

The Ultimate Test

Even a day before finding out I had cancer, my health was a certain level. I wasn’t the same as I was when I was 25 years old, but in some ways, I may have been even healthier, 33 years later. Regardless, that level was my current baseline.

The day I found out I had cancer I also had major neck surgery which took its toll. I never fully recovered from neck surgery when the radiation and chemo therapies started, so I did not return to that pre-surgery baseline.

Then the radiation and chemo treatments started, which dragged me down physically even more. This necessary, but seemingly barbaric medical process was kicking the shit out of me. It was dragging me even further away from my health baseline.

By the time the treatments are done and for a couple of weeks after, I was feeling worse as each day wore on. The pain in my neck was there almost constantly, with intense flare-ups occasionally. Energy was a dream more than a reality.

But then I started seeing signs of recovery – more energy, less pain, slowly eating more. From all those in the know, it might be months before all of this completely clears up and it is only a memory.

So over a 6 month period, I have been beat up physically, just to return to the my health baseline the day before the surgery. No bonuses like an enhanced libido, just back to where I started.

This is the ultimate test through this journey. Enduring the intense impacts of the treatments and have these linger for months, with no obvious gains, but with the knowing that the procedure will enhance my life going forward, not having those particular cancer cells within me.

To me, this is the ultimate test of my faith in the system and people that work their magic in dealing with cancer.

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Some are exciting – like the first time I road a two-wheeler. I was 5 years old and I decided to try my older cousin’s bike at my grandpa Bassett’s house. Something just clicked right away and I was able to ride almost effortlessly. Although I didn’t recognize it at the moment, I was experiencing the thrill of riding a bike and the rush of new-found freedom. Unfortunately, these were quickly replaced with physical discomfort when my cousin pounded me after discovering I was using his bike. But it was worth it!

Others are nerve-racking. There’s a little stretch of road in Hamilton called the Sherman Cut. The first part of this road is in a section that was sliced out of a rocky escarpment. The roadway is quite narrow. I recall the first time I drove up that roadway like it was yesterday, even though it was nearly 40 years ago. I was by myself, scared and keeping a white-knuckled grip of the steering wheel. The whole stretch took less than 10 seconds to travel, but my nervousness transformed into a feeling of exhilaration, like I was flying, not driving. I was legally stoned, however briefly. I haven’t felt that same rush on that stretch of road since.

Others are stunning. When I was 16 my eyes saw perfection in the form a brunette beauty named Melody. We actually lived together in a group home, so it was easy getting over the hump of simply talking to her without babbling. It was a little trickier digging up the nerve to ask her on a date. I had never asked anyone out for a date before. When I finally had enough courage, I asked her and to my shock she said yes. She eventually ended up breaking my heart into 1,000 little pieces, causing me to sing Barry Manilow songs for days, but since she was my first love, she will always have a special spot inside me.

Yet others are simply shocking. Like hearing the words “you have cancer”.

The cancer treatments started a few weeks ago and over that time I have experienced a few more “firsts”.

The First Chemo Session

The chemo session was the first treatment I received on day one. Sue came with me and stayed the whole day. After first checking in with reception, we were asked to sit in the waiting area. The room was 3/4 full of people and I noticed that every patient had someone with them. Some patients looked a little rough and it seemed obvious that their companion was there to help them get around. Many patients looked quite good, and maybe their companions were there for support and to keep them company. Since I hadn’t received anything yet, I was in the latter category.

We eventually got into the chemotherapy room and I got hooked up to an IV. The whole infusion took 4 hours – 2 hours of saline to  ensure I was adequately hydrated, followed by 1 hour of the chemical, then another hour of saline. I must have been tired because I told Sue that I wanted to take a nap and upon closing my eyes, I was snoring loudly within a minute, much to Sue’s embarrassment.

After the infusion was completed, I left to go downstairs for radiation treatment. I didn’t feel any different than when I arrived which I was quite happy about. They left the IV in place because it was used to deliver saline for 4 hours a day, five days in a row at home – to make sure I had enough fluids on-board. The only medications I was given were to help fend off nausea.

The only side effect that I noticed was an increase in ringing in one of my ears. I know that hearing can be impacted for up to one year after chemo, so having my hearing effected so quickly worried me. I knew I needed to get good quality hearing protection.

The First Radiation Session

Sue and I went 2 floors down to the radiation wing after leaving chemo. This hallway has 4 different radiation machines, each with their own waiting area. My area was at the end of the hall. About 10 minutes after we settled into the waiting area, I was called to go into the radiation room. Upon entering I scanned the room quickly. There was a bed built more for function than comfort. The head of this bed was positioned for the bed to move into the circular machine – the machine which delivers the radiation.

After a very quick prep, I laid down on the bed. The 2 staff members put my fitted mask on me and positioned me perfectly for the treatment. The mask didn’t allow me to easily open my eyes, so I kept them closed during this first session. The staff members told me it was going to start and they left the room. I heard some humming of machines during the treatment. Then in less than 5 minutes, the staff were back in the room, telling me we were all done. I was surprised how quick the treatment was.

Just like after the chemo, I felt fine. Nothing odd or unusual – which, again, I was happy about.

I didn’t really expect any side effects that soon. Unfortunately, the side effects did start kicking in sooner than expected.

I’ll Pass on the Bacon

I am receiving radiation treatments every weekday for 6 weeks. I ate quite normally for a few days into the radiation. On the Thursday night of the first week I was settled in my bedroom to watch Game of Thrones. I was tethered to an IV pole for 4 hours, so I thought I would catch up on some TV and maybe enjoy a small bowl of chips. I’m in my chair, the show is on, I grab a chip and take a bite. What the hell was that! It tasted like a wood chip. Maybe I got a dud. I tried another – still wood chips. I quickly realized that my taste buds were already changing. I was told this could happen, but I did not expect it so soon.

On Saturdays we often have pizza/movie night as a family. I love those nights. We found a pizza place that served real bacon, not just bacon crumble or bits. I got comfortable on the couch with my TV tray, staring down a couple of slices of hearty pizza with real bacon. First bite – WTF – more wood chips. Second bite was the same. I didn’t finish the first slice.

I lost my appetite at that moment. It’s obvious that taste drives hunger and appetite, but it becomes abundantly clearer when most everything starts tasting different or just plain crappy. Over the following couple of weeks, the tastes of foods deteriorated even more. Now it’s not a matter of finding something that tastes great, it’s more of a matter of finding things that taste less shitty.

I was told that I should avoid foods that I love during this treatment process, otherwise I run the risk of permanently associating lousy tastes to that food. I have therefore decided to avoid bacon until a couple of months after treatment ends.

To Make Matters Worse

Imagine the radiation machine as being a very expensive suntanning bed. The only difference is that suntanning beds affect the outside, potentially burning the skin if left too long. The radiation machines dig a little deeper than just the skin level. The radiation I am getting is 360 degrees around my neck. My spinal column is not being radiated, but a lot of my neck is, including my throat. Over the course of many treatments, my neck is becoming red (cue the redneck jokes!) – it is effectively becoming burnt gradually. But so is my throat. It’s like having a sunburn from the inside out.

Within a week and a half of the start of the treatments, my throat was extremely sore. Unfortunately, I couldn’t simply rest my throat because it gets used much too often. I was (and still am) spitting up blood from my throat frequently. Every bite has pain to it. The intensity of the pain fluctuates, but it is constant. Even drinking water hurts to varying degrees.

There is a certain irony to this process. The treatments are wearing on my body, so I need more protein and calories than normal to help the healing, but the treatments take away your want and ability to eat. This is the first time in my life that I simply don’t want to eat. I am eating out of duty to my body, not out of desire. I now see why people lose weight during cancer treatments.

People Staring

On the Sunday after the first week of treatment, I took Treva out on one of our dates to Wimpeys. I was already experiencing changes to my taste buds, but I could still enjoy a few things. The restaurant was closing within 30 minutes of our arrival, so there weren’t a lot of customers. In a cubicle next to ours sat an older lady. Treva had her back to the lady, but I could see the lady quite easily past Treva. After a short while, I noticed the lady was staring at me. It wasn’t just a passing glance, but rather, it was a locked-in gaze. Most people look away if they get caught staring, but not her. Eventually she broke away and started looking around elsewhere.

Then she started again. I am fairly secure, but she made me very uncomfortable. What the hell was she looking at? I was simply trying to enjoy a nice daddy/daughter date. Finally, I had enough and simply asked her “Why are you staring at me?” She fumbled around, obviously feeling awkward, and left the restaurant a minute later.

I know my look has changed – the nerve on the one side of my mouth still isn’t working quite right and my neck is red from the treatments. I am sure I get more subtle looks from others that I don’t even notice, nor do I care about usually. This was the first time I can recall feeling singled out because I was different.

The Eyes Hold Secrets

The eyes tell so much. Not like the older lady in the restaurant staring at me, but sometimes just as revealing.

I went to an event recently and I met with some people I haven’t seen for a while. Nearly all of them knew beforehand that I have cancer and I am going through treatments. In some people’s eyes I could read a surprised look that I was actually there. In others I could see a sadness pointed my way. Both viewpoints seem to come from a thought that cancer means you are on a crippling path to your maker. Sure the treatments are very challenging, but I’ll be around for quite a while yet.

I spent time with some of these folks demonstrating that I’ll be okay. I am a little banged up right now, but I’ll be okay. By my showing them that cancer doesn’t have to be a terminal death sentence, it seemed to make them feel more at ease.

I know that other people are dealing with my cancer in different ways. Sometimes I need a helping hand, but sometimes so do others. My job sometimes is to remind people that this is all temporary and I (we) will be beyond it in due time.

Upcoming

Tomorrow I start my second half of the treatments. My second chemo session. My 15th radiation session. Truthfully, I am not looking forward to this week. As the oncologist said, the treatments are the same, but I am different – especially with the cumulative effects of 3 weeks of radiation. I have already had a taste (pun intended) of how these treatments can impact me, so I am a little concerned about what this week will bring.

So many firsts are behind me now, but I understand more firsts could rear up over the next little while. Although I think I am ready for them, I also am blessed to have so many people who have volunteered to help me should I need it. Many people have reminded me they are only a call away for help.

I just might be calling.

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The dance with cancer is different. I can’t simply choose to elect a simplified dance and force my partner to tolerate it. Everything is so new. I don’t know the tempo. I don’t recognize the style of music. I can’t feel the intensity of the rhythm. Hell, I can barely hear the music. Right now, cancer has the lead in the dance.

PETs Allowed

As the doctors probe a little deeper, they use different scanning tools to see if cancer is showing anywhere else. I had a CT scan of my chest which showed nothing “remarkable” – a term I’ve grown to love. There were no signs of any lung cancer and given the smoking I’ve enjoyed too much over the years (even though I quit quite a while ago), that was good news.

The next level of testing is the PET scan. This is used to scan for active cancer masses over a large part of your body. For me, they scanned from my knees to the top of my head.

The PET scan appointment took nearly 3 hours. After the usual checking in, I was asked to slip into one of the hospital gowns. In the world of “one size fits all”, I am an outlier. The nurse then put an IV line in my arm to prep for the test. I was then asked to drink some room-temperature concoction of water and sawdust. Okay, it wasn’t actually sawdust, but it held the same appeal. After a few minutes, the nurse wheeled in some large cart. She connected a line from this contraption to the IV line in my arm. The device was used to inject some radioactive elements in my body for the scans to detect.

I was mildly radioactive. That explained the sign I saw in the bathroom advising people to sit for all bathroom activities – to minimize radioactive spray. Really? I turned off the light in the bathroom a couple of seconds before opening the door to see if there was even a slight glow in the bathroom… nothing.

I had to wait for a while to let the radioactive elements to settle into my system. I then had to drink a little more of the nasty drink and then go the scanning room.

The PET scan looked like a bigger version of a CT scan. A big donut with a bed that slides back and forth through the donut. It was nowhere near as tight as an MRI machine, which I was happy about. I was asked to lay down on the narrow bed that could have easily doubled as a balancing beam.

The machine scanned a (roughly) 4-5 inch section of my body for a few minutes. The bed would then slide down to allow the machine to scan the next section. No noise, no flashing lights. It took about 40 minutes, with the last 25 spent trying not to think of how badly I had to go to the bathroom

The Results

I met with my radiation oncologist 3 days later. As the appointment drew nearer I found that it took more effort to rid my mind of the nervous chatter – what’s he going to say? Is there anything else to deal with? What are the next steps? Fortunately, I had my work to help me keep my mind focused on the now.

The oncologist simply told me that the PET scan did not reveal any active cancer tumors. I was happy to hear that. Then he went on to summarize all the findings to date.

The cancer cells analyzed in my the lymph nodes removed from my neck were “poorly-differentiated”. He explained how cancer cells evolve in someone’s body. Each normal cell in our bodies have differentiated – a heart cell looks and acts differently than a nerve cell. In the early stages of a cell becoming cancerous, the features of the original cell are still identifiable – still differentiated. At these stages, cancer can be more benign.

As these cells transition into more a more cancerous form, they increasingly lose the features to identify where they came from. At the latter stages of this cellular evolution, the cell’s origin can no longer be determined. They are now poorly-differentiated.

From what the oncologist described, these cells are the dangerous ones. They are much freer to travel elsewhere in the body and trigger cancerous growths.  Because of the nature of the cells found, he strongly advised that they treat the cancer aggressively to minimize the likelihood of future challenges with cancer.

The Plan

The plan prescribed is a combination of radiation and chemotherapy. Radiation would occur daily (M-F) over 6 weeks. Chemo would occur on 3 days – the first day of treatment, and 2 other days later within the 6 weeks. That all seemed fairly straightforward, that is, from my purely academic, sweetly naive viewpoint. Already within a couple of weeks of that appointment, some things have happened to dent that naivety.

The Mask

I quickly came to appreciate how important it is to keep a patient’s head during the procedure. Nobody wants a patient to pop up and ask for a glass of water while radiation is being beamed in. In order to lock my head in place for radiation, I had to be fitted for a mask. It is basically a plastic meshing which is warmed up and formed over my face, with a frame on 3 sides which is used to hold me in place.

I was asked beforehand if I was claustrophobic. Generally, I am not, but I am not really a fan of tight spaces. This mask does impose a sense of being in a tight space, feeling constricted. The one thing that makes me feel more comfortable with this mask is knowing that each of the individual radiation treatments is quite short.

I Hear You

I was told that I needed to have a hearing test done prior to any of the procedures. I just thought that since the radiation would be occurring in the neck, that there was a chance that neighboring areas such as the ears could be affected by any radiation scatter. Maybe the hearing test was just a formality and that potential impact of radiation on hearing was very low.

I was wrong.

I did the hearing test on the morning that I was to see the chemo doctor. The hearing tests showed some minor hearing loss, nothing too abnormal for a person my age. But the audiologist also told me that the chemo could make my ears much more susceptible to hearing damage for over a year after the chemo treatments. No one had ever mentioned this side effect.

She gave me a lengthy listing of noises that could prove to be damaging over the next year. No surprise: rock concerts and jackhammers. Surprising: blenders, barking dogs and vacuums. She emphasized how important it is for me to wear hearing protection over the next year.

When I met the chemical oncologist, he said the drug being used to treat the cancer I have will definitely make my ears more prone to damage. He said that the chemical will get flushed out of my body within a couple of days – except in the ears. The chemical camps in the “hearing” part of the ear for over a year. 20-40% of patients can experience some hearing loss.

Since I want to be part of the 60-80%, some things will change. I won’t be going to any hockey or football games. I won’t be going to see Blue Rodeo in concert (which we do annually). I won’t be listening to music with my headphones on. This last one seems like no big deal, but it is a huge one. For 40 years, I have found great therapeutic value in putting on headphones and losing myself in a local concert of my choosing. Depending on where I am, I often decide to help the lead singer. From Meatloaf’s “Bat Out of Hell” to Harry Chapin’s “Cats in the Cradle”, I can cover it all. This will have to put on hold.

The Final Piece to the Plan

After finishing with the audiologist, I went to see the chemo doctor. Sue joined me for this visit. The first thing that hit me was the number of people in the waiting room waiting to see a specialist.

The chemo doctor was much younger than I expected, but I could tell quickly he knew his stuff. He had a quirky sense of humor, which I liked. It also gave me the green light to joke right back with him – yet still have this obviously serious conversation.

He told me about the chemical they were going to use. We discussed various dosing options – either smaller doses more frequently or larger doses less frequent. There wasn’t enough research to show which approach was better, so I chose less frequent visits, figuring I could spend less time cooped up in the hospital.

He also told me about the impact on my hearing. This one bothers me, but I have to trust it’s for the greater good. He also told me that I will need to have a nurse come into my home for each of 5 days after each chemo treatment to administer some fluids to ensure I remain properly hydrated. Another new piece to this cancer treatment regime.

He also said that I will likely only need 2 doses of chemo – one less than first thought. That I am okay with.

Some Final Prep Steps

After the oncologist left, a nurse came in a few minutes later with a detailed schedule for the next 6 weeks. The chemo/radiation combination is starting May 13th. The whole day is scheduled for the infusion followed by the radiation part of the day. Before the actual radiation, I will be fitted for a guard for my teeth. I think is to help protect my teeth from the radiation, but it is also meant to minimize radiation scattering that might bounce off any of my fillings.

The nurse took me on a tour of the chemo treatment wing. Again, the number of people being treated and waiting for treatments was heart-stopping. So many people having to deal with cancer, and this was just a small subset of the grand total of patients at the Juravinski Cancer Centre.

The last thing to do before leaving the hospital was to buy my 6-week parking pass. That was the easy part of the day.

Nothing Now But Waiting

So now I seem to be filling in time waiting for Monday morning. Happily, it is Mother’s Day weekend so there are some visiting and festivities to help pass the time.

I am waiting on Monday morning with an odd mix of intrigue and apprehension. I am intrigued to see all the equipment and processes – how things work, learning new things. I am a little intrigued as to the side-effects of this treatment – what will happen, when it will happen. This is also where the apprehension comes in. Some of the stories regarding side-effects (short-term and long-term) scare me. I keep telling myself that this is payment on an insurance plan for a healthier future.

Cancer Has the Lead – For Now

As the treatments get going, I will start to see how I am reacting. Currently, my mind is sharply focused on keeping the bumps on this journey to a minimum, but this is all new. I have no experiences to judge how my body will react to these intrusive procedures.

Because of these unknowns and uncertainties, cancer has the lead in our dance together. I cannot even pretend to lead when I can’t even hear the music or see what is on the upcoming playlist.

But I do know that with time, I will know how I am reacting to the treatments and what to expect. As that time slowly unfolds, I will begin to hear the music. Eventually, I will choose the songs. I will take over and lead this dance with cancer.

Until then, patience is my friend and ally.

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