13. Chemotherapy is a Beach

By In Treatment

I woke up Saturday morning with Sarah having flown down on the last day of radiation. I was excited, as I bought tickets to a Savion Glover show that night, as both a celebration and a continued reminder that life is not all about brain cancer. I looked at my calendar to see what time the show was and I stared at the screen. My jaw must have looked elastic as I gazed at my schedule for the next month. It was really…empty. It was like it was looking back at me and saying, “hey, what the hell happened?!” 

It was the last day of March and the last six months were hectic, let alone the last six weeks. My calendar got the workout of its life and now, just like me, there wasn’t much to show except for exhaustion. Radiation had ended and what had become my life’s routine, was now over. It was like a relationship, where I gave it everything I had, and the other party basically told me they were not that into me. It was a rude awakening and it caused a fair amount of reflection, looking back on the days with rose colored glasses. In reflecting, I always knew that I needed to keep moving forward. Radiation might be done, but I was still in my chemotherapy regimen and that needed my attention. My calendar would not be as full with radiation drugs and appointments, but life was still happening, even if it were in the most mundane ways.

I needed mundane. April 8th was the one-year anniversary of my dad’s death. Throughout my cancer journey, I looked to him for guidance, strength and hope. I flew up to my mom’s apartment that weekend and spent time with her, my brother and Sarah. So much had happened in this one-year and while I tried to find things to celebrate, I floundered to even comprehend my dad’s death, let alone my own mortality. He wouldn’t want me to sit around crying and being distraught, but that is exactly what I was. I broke like porcelain on concrete and my soul and my heart shattered everywhere. I knew someday, I would find random pieces and put them back together, but I also knew I wouldn’t find them all to make me whole again. The fragility of life was so apparent, yet here I was traveling back to DC to continue life after a somber weekend. Time stops for no one, even when we try to recall the most recent events in our mind, the event is fleeting and becomes a memory. I cherish my memories; good, bad, and the grey spaces in between, and I have learned that we can remember, but we cannot repeat, and this is why we have to move forward.

Upon returning to DC, I was faced with the unenviable task of moving. My apartment was barely big enough for Shadow and me, and Sarah and I thought it would be nice to start together in a place of our own, where we weren’t forced to live our lives in a dysfunctional tiny home reality show. Maybe we could find a place where cancer wasn’t so prevalent, but that was naïve and hopeful thinking. Radiation treatment time turned into apartment appointments and it made me wonder which one was more daunting. There is an excitement in shopping around for apartments, but there is also a dulling routine of filling out applications and searching the internet for information. My radiation treatments were similar in that I was excited that radiation might help me live longer, but the daily routine and the side effects left me with brain fog and the grand desire to just be done.

Sarah was still finishing school in Boston, so I had to check out apartments on my own and send copious amounts of pictures to make sure we were on the same page. It took a lot of patience and energy to go to work, continue chemotherapy and then check out houses with a fake smile on my face. No landlord wants to rent to a grumpy tenant, so I would mainly walk from apartment to apartment or grab a zip car to make appointment. My immune system was weak and the last thing I wanted to do was get a cold sitting in the back of a DC cab. This was the start of my “new normal” in that I was still required to do the things I used to do, but now with a weakened immune system, and physical and mental strength.

When I finally found our new apartment, I was relieved to just be done. The place was nice and for the moment, it was a convenient area where I could take the bus to work and Sarah could move in and study for her boards and look for a job. My brother, Neil, came down to help me move my belongings. We packed in about one day and moved the next. I was worthless. I was like a toddler that wanted to help. I basically grabbed small things with abandon and moved at the speed of a tortoise. It is times like those where I noticed how vulnerable I was and how much help I needed. I learned to swallow my pride on many occasions, which made me realize that I was carrying too much pride prior to the humbling experiences that cancer provided. 

With my belongings now moved into the new apartment, my brother and I got to hang out for a few days. When I returned from Peace Corps in 2006, I flew into Logan airport in Boston. My brother was there to pick me up and he was a sight for sore eyes. I missed my family, so it was an incredible feeling to see him and receive a huge bear hug. Neil has a habit of being there for me in the lowest of times. This time was no different as I returned to America with bewilderment and feeling without purpose. The ride from Boston to my parent’s B&B in Southern Maine was emotional for so many reasons, but his presence alone was grounding and comforting. After a couple of months with my brother and parents in Maine, I was ready to move back to California. I mentioned this to my brother and his response was something like, “ok, when are we leaving?”

We did a temp job together to gain some moving money. We sat in a warehouse with many others grading SAT scores, and after a month of questioning how I was ever accepted into college, we left the job, got into our cars and headed West. We lived together in Berkeley for the first time since we were in high school and I look back on those days with fondness. My return from Africa and that move with him is just an example of him being there for me when I really needed it. It was also a first in what would be a succession of moves where he helped me gather my things, pack them up and lug them from apartment to apartment. The move when I was in chemotherapy made me feel like the little brother I was, and also showed me how great of a big brother he was and still is.

The day after he left, I entered the MRI tube and subsequently waited five days before I found out my tumor was stable. When I was at Georgetown, the wait for results after an MRI was brutal. I was two weeks out of the six weeks of radiation and chemotherapy and my mind was already wandering down the path of, “did it work?” I was starting to regain some strength and cognitively, I was slowly coming out of the fog that hovered over me like a San Francisco morning. The MRI had become customary at this stage, but this one felt like it was a tell-tale event as to whether the six weeks of nearly killing myself was “worth it.” My MRI was on a Wednesday and this was when I realized I needed to schedule them on Mondays in order to have a chance of getting the results in a timelier manner. Wednesday MRIs meant that the first time I would receive the results would be the following Monday. Waiting five days versus three was enough to drive one mad in anticipation. Hell, I could order one hundred Amazon packages and receive them all within five days and none of them were delivering me anything more important than the MRI would.

Monday came and my appointment with Dr. S was filled with blood tests and more waiting. I would arrive at the Cancer Center and would draw blood and then sit back down in the lobby. I would wait to be called back to a room where I was weighed and measured for my height. The weight I understood. Afterall, the weight was important to help calculate the amount of chemotherapy to give, but the height measurement always made me laugh. I didn’t need anyone to tell me I was short; I had enough problems, so confirming my height is below average was just an unnecessary slap in the face. After this demoralizing event, I would go to the room and wait some more. Often the wait was long and after memorizing all of the charts and pamphlets in the room, I would get anxious. It was day five and I was able to wait that long, but the minutes and seconds in those rooms always felt like eternity. There were more times than not where I would open the door just enough to see others passing by in hopes they saw me too. “What if they forgot I am in here?…opening this door would surely remind them of my existence.”

This tactic mostly failed. There was a chart on the door to alert my medical team that there was indeed an anxious human behind the door. Footsteps and shadows would appear, the chart would be pulled from the door and it would slowly open to reveal a nurse or medical technician sent in to check my vitals. I would sit up like a dog waiting for its human to come home and then sink back into my chair as if I just realized it was the mail carrier. Disappointed, but delighted at the same time there I was receiving human interaction, I greeted the human as if they were my long-lost friend. My temperature would be taken along with my blood pressure and with that, the human would leave only to say that the doctor would be in soon. I would turn in circles several times and sit back down in my chair with my puppy eyes gazing at the door that was now again closed.

The cruel pattern would continue as a resident knocked on the door, introducing her or himself, but with no further information. I would move from my chair to the table to be asked the scripted questions and perform field tests. I have always felt that this routine was like an interview for a job. I would answer the questions and perform tests that were not unlike what you see in a field sobriety test for impaired drivers. Some of the questions were designed for a purpose to test cognitive ability, but I always wanted to meet the person who created them so I could ask them the same. “Tell me the months of the year in reverse order.” “Count down the alphabet from Z.” My mind, growing impatient and just wanting to know what my MRI looked like would silently say, “YOU first!” After memory games, prodding and poking, and balance tests, I just wanted to go home. It was like going to the movies only to sit through the worst previews and then leave before the movie even started.

When the resident checked the boxes and felt satisfied that I was humiliated enough, they would tell me that they were going to go get my doctor. Again, the door closed and I waited as impatiently as possible. I would pace the floor, count the ceiling tiles and of course test myself on saying the months of the year backwards to see how fast I could do it. I would do anything I could to trick my mind into believing that I wasn’t waiting, but there was no doubt that I was. It is funny what we try to do while waiting to convince ourselves that we aren’t just wasting time. It reminds me of getting an oil change (before there were cell phone), as you sit in the waiting room with the other waiters, and there might be a water and coffee station and that small 1980 TV hanging from the corner of the ceiling. It has some horrible program on, like Donahue, but you can’t turn away from it, because your alternative is just to sit there…and wait.

FINALLY, the door would open again and there with a glowing light around what would be Dr. S. It was game time. My angst would re-appear as we made our way through the polite niceties as I tried to remain patient as my inner voice is yelling and shouting, ‘JUST TELL ME!” Dr. S would bring up the slides on her computer and I would try to peak around to see the images as if I would know what I am looking at. She’d line them up and then say the words that mean so much to a brain cancer patient, “The images show no new growth…it is stable.” No matter how many times I have heard this over the years, it always draws out every emotion from every corner of my mind and body. The anxiety fades, the confirmation that I‘m not a dead man walking just yet, lifts my spirit to a renewed space where I can focus on the moment with relief and joy.

I stare at the images on the screen and focus on the wedge of my brain that is forever gone. I deeply gaze at the point where the tumor still stands and reflect on the course of how my neighbor as forever changed my life. In that split moment I see my past and future embraced in a bond that is my life. There is pain, struggle, disbelief and all of it is wrapped in a heavy blanket of gratitude. I finish the exam with Dr. S knowing that my family and friends are waiting to hear from me. I leave the room, pass through the waiting room and through the Cancer Center doors. I wink at old Lombardi, thank my dad for his guidance and as the exterior doors slide open, I embrace the sun on my face as I again weep tears of fear and hope. The long wait is over and my mind is free to focus on other aspects of life. 

Sarah is now two days away from giving her final presentation and earning her advanced degree as a Nurse Practitioner. I was so excited as this meant we would finally be together in our new apartment. I worked as much as I could that week and after Sarah told me she finished her presentation, I focused on the joy of life. Not everything needed to focus on my cancer and how I was doing. This was her moment. She worked so hard and how she managed school and me is something I will never know, but will always be grateful for. Cancer doesn’t just impact the person who has it, it impacts the village, and my village deserved to celebrate her and she deserved to be celebrated. 

I got on a plane to Portland, ME where my mom greeted me with smiles. I was able to spend a couple of days with her and then we drove to Boston to help pack up Sarah’s belonging. Sarah’s family was there and I barely lifted a finger. The joke was that she moved so many times, that there was a perfect spot in the moving truck for everything. Within hours we packed the truck and celebrated at one of my favorite breakfast places in the entire world, Sound Bites. With full bellies and some heavy goodbyes, Sarah hopped in her car, and I climbed into the large moving truck as my mom and Sarah’s family looked at me with worried eyes.

Should I be driving a twenty-five-foot moving truck from Boston to DC on I-95? The resounding answer was an absolute “no,” but there are times when the unwise thing is needed. In a weird way, I needed this. Trust me, I had some trepidation about the long haul and the beast I was in charge of, but my main concern was that the truck only had a radio and no CD player. The things we focus on in life will always confound me, but one of the most important aspects in my life was and still is, music. We made our way down the long corridor and arrived safely. I was exhausted, but my pride beamed through the exhaustion like a Care Bear stare! 

The following weekend was the Race for Hope in DC. My colleagues formed a team and came out to support me. Working in a large law firm can be soul crushing at times, but the love and support I received after my diagnosis showed me that every business has a heartbeat. I didn’t start working there to make friends, but it was the friendships I made that kept me going back each day. The team met up early on a Saturday morning to run or walk in a race not for medals and prizes, but for hope. I was an avid runner before my diagnosis, sneaking out of work midday even on the coldest or hottest of seasons. I loved running on the National Mall, by the monuments and the flocks of tourists gazing at what felt like my backyard. Since my diagnosis, I had not run. The day of the Race, I strapped my on my running shoes in an effort to run with purpose, even if it was a slow trot. 

I had just finished my round of chemotherapy two days before the run. This was my first round after the initial six straight weeks of chemotherapy and radiation, and I felt pretty good overall. Granted, my bar of feeling good was a lot lower, but I felt good enough to get out of bed early on a weekend and run.

My mom had come down and her and Sarah walked while I was determined shake off the rust of radiation and chemotherapy. “Survivors” wore yellow shirts and supporters wore grey shirts to celebrate friends and loved ones. I have always struggled with being considered a “survivor.” I had survived brain cancer surgery and was still in treatment, but I was more focused on thriving. I felt it was my duty to thrive for all those that didn’t survive. The Race for Hope was just that for me. I felt, I am here, I can run; therefore, it is my duty to do so. I thought about my dad a lot during that run and with each yellow shirt I saw, I made a point to share a smile, a high-five or a hug. I ran on pure emotion that day, not caring the speed of my feet nor the pain and discomfort of my legs and body. I vowed then that because I could run, I will run until I can’t anymore. This is what motivates me on those days where I don’t feel like it, even if the sun is shining on a brilliant day. I never wanted to forget my experience with brain cancer; little did I know there wouldn’t be one minute where I could forget, but I wanted to remember the things I took for granted prior to my diagnosis. Being able to run felt simple, so I wanted to remember it in that way so that there were no excuses.

Sarah’s big day was almost here. She worked really hard and somehow maintained focus to graduate. I was really proud of her then and am even more in awe these days. We hopped on a plane to Boston to celebrate with her family, friends and classmates. I look at the pictures and can’t help to notice the camera flash beaming off my head like an opaque mirror. The other thing I noticed was the joy and laughter from Sarah. She finished a very tough graduate program and did so under incredibly trying circumstances. We celebrated through the weekend, then drove with my mom, brother and his then wife to a small airport hotel in NYC to get on a flight to honor my dad.

So, with all this talk about treatment, it apparently prompted Sarah’s family and mine to do island trips. When my father passed away, one of his wishes for his remains was to be buried at sea. The man loved the ocean, but he did say, “if you scatter my ashes in cold water, I will haunt you!” So with that dire warning, my family decided to honor him and his love for Antigua and head there to scatter his ashes at sea…in very warm water. When I look back at pictures from that, I don’t necessary look at myself as a cancer patient going through treatment. I look at those images and they float into memories from my own lens, as if I am the photographer, and I don’t see a cancer patient at all. I see a kid missing his dad. 

It was just two weeks after my first solo cycle of chemotherapy. After all the emotion and events, I was fried. I broke down in the airport hotel just before we caught our flight from NYC to Antigua. The combination of treatment, the fresh memory of my father and the purpose of this journey, and travel brought me to glorified temper tantrum. Treatment not only has an impact on your brain and body, but also your mind. We focus on white blood cell counts, immunity levels, energy levels and more, but we don’t talk about the side effects on the mind as often as we should. The rest of the trip shared its ups and downs as one might expect. When we celebrate the ones we love, it is natural to laugh and cry, so we did our fair share of both. 

The flight home, I was sitting in the aisle seat and dreading going back to DC to deal with extended reality. The flight attendant was having a bad day. It was apparent from the second I got on the plane, so I could have handled the next event better. When she came around for beverage service, she spilled and entire cup of orange juice on me, and the only thing she could muster was, “things happen” as she handed me a few napkins. First of all, those napkins are worthless for the purpose they are used for. I am sure the airplane napkin has a very useful purpose; it is just not to be an airplane napkin. Trying to mop up several ounces of OJ with an airplane napkin just added to the building rage that was quickly brewing. “Things happen.” If she only knew that I knew all too well that “things happen.” We exchanged words and she told me not to speak with her for the remainder of the flight or else. The orange juice slowly dried under the constant cold beam of air from above my head, and as it did, it turned into a sticky syrup-like paste. I didn’t completely meltdown, but I did get angry and it wasn’t something I particularly liked about myself upon reflection. We landed in Miami to get on a connecting flight…yes, ironic being the home of oranges…I was destined to DC, sticky clothes and all, but at least I now had a sink large enough to properly wash the OJ from my orange-stained clothes and citrus doused body. I didn’t even wait 24 hours after landing in DC to write the most scathing customer review on my experience. I am sure it never leant to much, but it helped calm the unhealthy anger. I was able to weave my words into a pattern of sarcasm and vitriol, yet productive enough poetry where I didn’t appear entirely insane.  

Throughout this experience I have learned that those who don’t know what you’re going through, have the ability to look at you as if you were just another annoying passenger, or flight attendant for that matter. In other words, it resembles a lack of care, regardless if the sticky aisle passenger has brain cancer or not. In a sense, it was refreshing because she treated me like I was just another person she had to deal with in life. It felt nice, dare I say it, to be labeled as “normal”, even if it came with a side of freshly squeezed apathy.  A lot of people that do know what you have been going through, want to call you a warrior, but also want to treat you like a fragile child, and you probably need both, but never wanted either. Sometimes I crave the normalcy, while other times it is nice to be the subject of other’s positive thoughts. We often don’t get to choose which option, but we somehow yearn for the opposite on occasion. I guess all this makes us humans, seeking our own ideal balance in a constantly turning world.

As if one bout in the sunshine wasn’t enough for my glowing 100-watt head, Sarah’s family booked us all on a trip to Bermuda less than a month after our Antigua journey. I had now just finished my second solo round of chemotherapy. Looking at these pictures, I could see the tiredness in my face, but still happiness in my eyes. It had a habit of reflecting in the crystal blue water where I felt gratitude for life and for being a tourist.

My head must have been a sight to see. My scalp, rarely seeing the light of day, caused the sky to wonder what the hell was so bright staring back at it. I lathered my head with enough SPF to cover the island and as the rest of my body turned a bronzed color, the more my head glowed like the Moon. I would have energy each day to play in the ocean for a couple of hours and then retire to my air-conditioned abode to watch the World Cup and rest. Vacationing during chemotherapy was frustrating as hell, but I was able to live in the moment and escape from my own rutted reality. And on the way home, I managed to evade all forms of liquid accidently dumped on me.

Ruts form after repeated passage down the same path without divergence. The longer you are in it the more difficult it is to turn your mental or physical wheel to steer out of it. I finally noticed that treatment is a rut. Not only is it a rut, it is designed to be just that. The daily regimen of chemotherapy, radiation, vitamins and supplements, waiting, work, side effects, staying positive, showed that treatment had become almost automatic. So much so, I didn’t have to think about the daily pill times, my mind had put them to memory. My walk to the Cancer Center was filled with repetitive motions with only the song in my earphones being different. My way home from the Cancer Center was not as fleet of foot as it was in the early weeks, but the path I forged each day was sometimes scenic and other times as expeditious as possible. Going on vacation during treatment might not have been the ideal trips, but they did allow me to escape the rut and reminded me that there were still many paths out there, so there is little need to form a rut going forward.

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