How cancer changes everything

This post relates to my own experience, about how things looks different than before.

My life before cancer

I was 24 years old, and I’m not really proud of my past. I grew up being too focused on what was on my mind at the time and not taking care of what I now think is really important. I was a shy kid, I still think I am. Initiating contact was not my thing, I let others do that for me. I spent my days thinking about my video games, my books, my Warhammer 40k models. I always had my mind somewhere else. My attention drifted easily from my teacher lessons. By being too shy and feeling the need to escape from others, I let myself without friends. I was taking advantages of others for my own benefits, staying with them but never really feeling part of a group.

If I reflect now on my past, I realize that I had friends, but I never really took care of the relationship I had with them, instead, I was manipulative and a douchebag. I would go to my friend’s house just to play on their console. I would talk bad to them, belittle them without realizing it. When we were invited my family and me to friends houses, I was bored, closed to others, only wanting to leave to go back home. Little by little, I became a pain for others, and they let me go, I was too toxic for them, I understand it now.

The weight of my wrongdoings became clear when I entered university. I was alone, not being really good to make contact with anyone. I had a lot of time to do introspection. What did I do wrong? Why? Can I change it? How? It took me two years to start realizing what I needed to do, I started going out with a group of friends. I listened more to what people were saying, and sometime, an answer to my own questions would appear, helping me move forward. They showed me that being closed to others would not help.

Still, my progress was slow. With each passing years, I would try to change something. I judged people to quickly, without knowing them. I was bragging too much. I almost never helped others solve their problems. I did not let others finish their sentence. I almost never took my time to do things. I had poor motivation. I never cared. I did not own my mistakes. I did not show any kind of emotion. Those were few of a long list I had to work on. And at the start of every change, there would be someone that helped show me the right path.

And at 24, I had come up a long way. I took the time to nurture the friendship I had with others, and it showed great results. I did not figure out every answer, but with what I came up, the results were great. At 23 I joined a startup based in Paris. I met a lot of cool people, all working for the same goal, to make everyone succeed. The team was diverse, almost everyone one had a different background, different origins, different ways of thinking. Being the sole IT Ops guy in the office made me learn a lot, I was alone in my understanding of my work, but never alone in wanting to make things better. We would share about all subjects, and I learned as much as I could. I was happy at where I was, and still eager to make progress.

The progress of the illness

I reflect on my last year at work, I compare it to the time I joined the company. The rate of my learning was different, I did not have a lot of motivation. I lacked the energy to do things. Little by little, I left my morning routine of working out at the gym. I was tired, always tired, my energy output was low. I think it started at the beginning of the summer of 2017. I had a project that I could not figure out, I could not put the same amount of thoughts into it than the previous ones. I felt tired a lot, I thought that I needed a break from work to get some energy back and to visit my family overseas.

I spent 2 weeks in Canada, my cousin and her boyfriend showed me Toronto and its surroundings. I Had a great time there, having fun with them, discovering what Tim Hortons was. But still something was disturbing me, I had gastric problems, at the time I thought that it would pass, like everything. Just wait it out, you will feel better after. I did not go to see a doctor, it did not really thought I had to.

When I went back to France, we went to visit my grandparents, they worried about how low on energy I was throwing myself on the couch at every occasion, not going for walks like we used to. I had problems staying focused on the drive back home. Later on, I would have chronic intestinal pain, and some nights I would sweat so much that the bed would be wet.

At this point I realized something was wrong, I took an appointment with my family doctor. We knew him since long ago, more than 20 years at least, so he knew me well. He prescribed me some antibiotics to take at every meal for one week. No real results. I came back to his office, this time he sent me to a gastroenterologist, but this time before consulting hours. I went to see him at 7 in the morning, not bad, I could go directly to work after. He did an echography and spotted some suspicious aggregates right next to my intestine, compressing it by their size. He gave me other medications that helped with the symptoms and set another meeting one week later.

The pain problem was solved, so I went back a week later thinking everything was fixed. I could not sense any difference by touching my belly anyway. He did another echography, and he showed the screen. Usually, the doctor would say “it’s a girl!” or “it’s a boy!”, For me “It’s a problem…”. The aggregates were still here, worse, they grew in size. He contacted the nearest hospital and told me that I will be tested for a Lymphoma. It did not really click, I brushed it away with a simple thought, maybe it would go away with some medication. The word Lymphoma was a stranger to me, so I googled it right after the appointment.

I was still in denial of what was happening. I even refused a bed in the hospital to be tested right away, I was thinking about work, deadlines, maybe I would be available for the next party… I followed the doctor’s instructions diligently, gave all the information they needed, did every test possible. It became clear that I had Lymphoma, but we did not know which one. They told me that it was on stage 4 and it had spread through all my body. At that point, I had to tell my parents, I could not hide the situation anymore.

There are two types of Lymphoma, Hodgkins, and non-Hodgkins and the prognostics vary quite a lot between both. I was reduced to go to surgery to get a biopsy. They used a needle that looks like a pistol, supposed to be guided by radio, then extract a bit of the tumor into small tubes and send them to the laboratory. A few days later I got a call from the hematologist that followed my case, she was quite embarrassed. She told me that something happened in the lab, and I had to retake a biopsy, but this time they would extract A LOT.

The surgery went on, they asked me what music they should play before I pass out. I chose Californication from RHCP, it fits quite well with drugs somehow. I now have a 5–6 centimeter scar next to the neck, it had some issues healing, I had to go back to the emergencies to check on it. After a few days again, I called the hematologist before the appointed meeting to try to get some information. She told me that the news was good and that it was a Hodgkin Lymphoma and that I had every chance of surviving it since it is a really well-understood cancer.

The path of chemo

It might be an understood illness. Still, the path to remission is a bitch. A stage 4 Hodgkin lymphoma would mean a 6 to 7 months long treatment. As the tumors were located everywhere in my body, reinforced chemotherapy was a priority. There were 2 different treatment, one to literally murder the lymphoma, another to be sure it won’t grow back.

The first is called “Reinforced BEACOPP”, it consists of a cocktail of different drugs: bleomycin, etoposide, doxorubicin, cyclophosphamide, vincristine, procarbazine, and prednisone. The length of this treatment would be 2 cycles/rotations. A full rotation is about 21 days and is composed of 4 days of injections (day 1, 2, 3 and 8) and the rest to recover from the stress all these chemicals put my body into. The second one is known as “ABVD”, as some might have guessed, a letter in the name means a specific drug. This one would be composed of doxorubicin, bleomycin, vinblastine, and dacarbazine. The cycle length is about 15 days with 2 days of injections (day 1 and 8).

There is a lot of different cancer treatments, and more to come with the success of immunotherapy and other less known methods. During the whole ordeal, I would regularly read Reddit posts about new ways of fighting cancer, Alzheimer and lots of different illness. A lot of amazing, mind-blowing stuff, for instance, a new way to kill brain tumors using a modified Polio virus or how some disease can be spotted months before they show their firsts symptoms by looking into the intestines. But for my case, it was just plain and straightforward chemo. A 6 months long marathon. My treatment was 10 cycles long, 2 for BEACOPP, and 8 for ABVD.

I believe some fights cannot be fought and won alone, you need a squad or at least someone to hold your shoulder and drag you to the next checkpoint while you push with your feet. Chemotherapy can be compared to a long trek in straightforward terms. Endurance, a strong will, and patience are most needed. In the beginning, it seems easy, good days compensate for bad ones. You learn to live with the side effect of your medications, the long list of pills that you must take every day.

I would say BEACOPP was the easy part because I had still strength to spare. They say the more a patient is joking about his condition, then the better his state of mind is. I would usually crack jokes the days the side effects were not that present. My mom would ask me to help with the dishes, well I can’t because I have cancer. My gaming friends would start having ideas about scamming people through Twitch streaming using my conditions. Edgier was the joke, the better it felt.

My mom and I were a team, focused on our day to day life. She would be the hand that dragged me through all the obstacle the illness trowed at me. She shielded me from all the “How are you feeling today?” questions from our friends and family. My sister was not home a lot, but she found what dish was the most appropriate for the days following the injections (noodles with chicken broth) and we kept cooking until the end of the treatment. My father was away for his job, but we called him very regularly to have news and of course, keep him informed about how things went.

The 2 cycles of BEACOPP went by, and my test showed very promising, all the tumors retracted to a point it could not be felt by touch and the scans showed excellent results. I was on the path of recovery, but still, the hardest was to come. ABVD is the guy waiting in the next corner, he let his friend do all the beating, but he is here to screw with your mind. The 8 cycles of ABVD would take a toll on me, I had different side effects. I would feel more tired as the treatment went by my motivation was not at his best level, I had anger issues.

It is hard to know you’re doing better, at least with your lymph, but knowing you have still to go on 6 or 5 more cycles. It enters your mind highlighting the darkest thoughts you had, the more tired you feel, the easier it is for it to screw it all. I remember lying in bed, looking my reflection on the mirror, seeing a head with no hair, huge bags under the eyes, like dark pits with no end, my skin so white desperately in need of sunlight. I thought I saw a dead body waiting to be carried away in a bag, still, waiting for time to pass.

I would have trouble keeping control of my feelings, being rude to some people, very few of my patience left for me to use. My mom experienced the most of it, and I regret it. Every single talk could spark an episode of violence in my mind. I felt like shit most of the time. The realization you are weak is the most violent. Weakness of mind, weakness of body. The feeling you can’t live alone, that you would die if no one watched over you, because you can not take care of yourself anymore. Every problem will result in a 3 to 5 days long visit to the emergencies, where there is nothing else to do but to wait because you are too weak to do anything.

The road is long to walk, but walking it with others makes it easier to endure. And at the end of it, at least some rest and joy. I ended my treatment at the beginning of June. The last injections were the most stressful, because the closer the finish line is, the more you’re afraid of the test results. You can’t wait to be done with it and hope it will never come back again. I was told I was in full remission 2 weeks after my last injections.

Life while recovering

My hair started to grow back while I was undergoing ABVD. Still, you could see the injection by looking at the shape of it. It began to grow white and little by little its original color came back. My beard took 6 months to grow back after I finished BEACOPP. Scarce at the beginning but now flourishing. It, however, changed in color and in shape. It is now more rigid, without the red color it could reflect at sunlight, now more dark, with little patches of blond and white hair.

My body was out of shape, as soon as I knew I was in remission, I retook a full-time work schedule. The doctors urged me to retake a standard way of life as quickly as possible. I changed a lot of things during commuting to be sure to workout at least a bit. I now go off the train to be sure I can do at least 20 minutes of walking every time. I also go out to after-works and parties if it is less than an hour by walking.

The first month was hard, putting my legs under more stress that I had done in the last 7 months meant that almost all the muscle I had before melted. I was having difficulties walking for more than 20 minutes and going downstairs was a nightmare. I could not lift more than a pack of water, and even that was exhausting. Still, I was happy being able to do those simple things, even if it meant feeling pain most of the time. Little by little you will bring your body back into shape.

By every passing day, you will be able to do more. Two months after remission, I was able to do one hour of biking every day and still have the energy to keep the workout going. I also have to warn you about working out while recovering from cancer, if you feel that your body can’t keep up, just end it here, take a day or two to recover and relax, and start again with a slower pace. Also, every cancer treatment is different depending on your body and the way it reacts, some will have this catheter under their skin, in this case, do NOT workout this body part because you will break it. In my case, I can’t work out my upper torso nor my arms. Be patient, you will be able to do it sooner than expected.

I could go outside again, meet friends at bars, enjoy the taste of beer again, with moderation because your body is still filtering the chemicals that had been injected. I could take care of myself back. I would try all of the different activities like para-gliding, dancing forro and hip-hop, theater. I started practicing guitar again, I started learning other languages. I have the energy to do a lot more than before. I want to try it all. I can finally go back to work again, learn new things that had been implemented when I was away and enjoy my time at the office. A new way of seeing everything replacing my previous view.

Change of mindset

Being out on the bench for 6 months gives you plenty of time to think about life. I wanted to improve myself, to bring the better in me. I’m aware I can’t erase every default I have, but now I have all the motivation in the world to devote myself to improving. The energy of frustration finally unleashed, pushing you forward to enjoy more of what you have.

Feeling this close of the abyss can’t leave you unchanged, I feel braver on certain situations, yet frightened. I have been brought to kneel before my mortality. I know that my time is limited. I feel like a giant hourglass is in front of me, and I can see my time slowly go down. I’m afraid of wasting my life, I’m scared of having regrets, I’m worried that if I have to leave this world sooner than expected, I will not be satisfied. I know that my body failed once, it can fail twice or more.

Knowing that one day, like everyone, you will fade, gives you strength to get out of your shell. Everything seems different. You start to notice little things that make you smile: “I never realized there were so many trees on this road, they look nice.”. I stopped caring about specific problems in life, they’re just here because they are here, if I can’t avoid them, whatever, I will enjoy everything else.

I know that some people are less blessed and don’t have the luxury of being done with chemo or being able to enjoy their life. They were forced to stay in bed, and all the choices were stripped away from them. I understand that everything can happen to anyone. So while we are still able to go out, have fun or learn new things, let’s make the most of it.

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