No one expects when they make a visit to ER, they will be diagnosed with cancer 5 days later. After experiencing chest pains that would not go away over a month, and 2 too many visits to local urgent care, I was finally treated for a cause. I had a collapsed lung, infection and fluid in a lung and a mass the size of a small watermelon in my mediastinum. The mass was stage 2 lymphoma. I was diagnosed with aggressive form of non-Hodgkin lymphoma, and by the 9th day I was in my 1st chemo treatment. I’d start a 6 month regiment of chemotherapy followed by radiation for 30 days. I continued to the best of my ability to stay active, even if it was just walking around the block, I kept moving. If there was one thing that was obvious, my physical health was huge factor in managing my recovery and ability to participate in life. I lost my hair, I lost my 6 pack abs, but I never lost hope and desire to keep moving. I also worked. Another factor in keeping my sanity. One of the things you may have too much of, time. It is all too easy to lay around, and pitty yourself. Wonder why me, how does this happen, will this cancer be cured? By working, I had other things I had to do. My focus was my health, but health also includes mental health. In fact this is likely more important than the physical health. One thing that can never happen, giving up. It’s a daily battle to remind yourself there is a light at the end of the tunnel. That good will come from all the bad days. Bad days. Each is uniquely different. It may be upset stomach to random headache to just not wanting to get up. Having purpose each day and a commitment helps getting through the bad days. Purpose could be to hold your child or get that report out for weekly meeting. In either case, purpose defines the day. The goal is to defeat Cancer. The purpose is to get up each day, and fight the fight. Mentally believing in the purpose and goal helps keep the physical health in check. It can provide balance where there is no balance.
Mathematically, yes, that is no where near 2.5 years. I jammed through the chemo, radiation knocked me down a bit. Chemo sucks, but I had fairly event-less few months. Each cycle the challenge of healing was a bit harder. Poisoning yourself to kill living cells is a task. Healing takes effort. Requires rest, exercise, nutrition, water (tons of water), and tenacity. Healing has to be consistent, persistent, and have drive. Wearing the mask out in public, taking a midday nap, eating something light, playing with the dog, and never doubting that tomorrow will be better. I knocked this out of the park! I was healing, I was on the mend, on my way to remission. I was in recovery. The radiation kicked my ass! I had low energy, and inability to fully breathe yet. I wanted to do my version of exercise and found myself doing less and less because my version was not happening at my pace, at my terms. Reality check, I just had a 10 cm mass in my chest, some how I managed to reduce it to less than 1 cm. I say I because although it takes a team, only I can choose to fight. Not quite a year after my radiation ended, A small mass presented itself in a scan. Oh hell no, I was feeling better, energy was coming back, what the hell?
As a result, my journey ( I hate that term) was zig zagging. A recurrence meant more chemo, potential more radiation, and possibly a stem cell transplant. I would start driving back and forth (4 hours 1 way) to University Medical Center because the resources needed were limited in my town. A simple biopsy would not work. Taking cores via thoracic scope would not provide enough sample. So, a video-assisted thoracoscopic surgery (VATS) was needed. Lets collapse a lung, squeeze through ribs, go through with a tiny camera and cut portion of the new mass out. Yah, that sounds easy, right? The mass wasn’t in a very good spot. Let just say one too many veins, tendons, vocal cords, and various other needed parts to function were over or intertwined with the cancerous mass. I don’t do anything simple. It would take 2 months to discover what I had, although it was assumed to be the same cancer. Needless to say, I had lymphoma again, with a twist.
The results indicated Hodgkin’s Lymphoma. I had not been misdiagnosed in my 1st treatment, they reviewed original biopsy results. How is this possible? The 1st reaction was a rare form of lymphoma, highly aggressive, test were negative. After numerous tumor boards, it was decided to treat as Hodgkin’s Disease and watch closely for changes. I managed to avoid stem cell transplant. But would go back through a chemotherapy regiment for 4 months. At which point I’d have to be clean (free of active tumor) or face unknown. I had already taken a drug that was hard on my heart. However, it provided the most bang, so I would take what was legally allowed (4 cycles), and then reexamine my status. I was still not clean after 4 months. Doctors were convinced if I could finish the cycles, the tumor would be gone. Unfortunately, I couldn’t continue on the regiment. A trial drug had recently been approved. I fell into a gray area. I was a recurrence but also a new cancer. It would take two hospitals to convince insurance of the need, but I got it for 4 cycles. The trial drug would replace my last 2 cycles of chemotherapy. As a targeted drug, it looked for specific protein and latched on to it where a poison would eventually kill it. A lot of faith in something you can’t see. It would be 2nd to last hope, or stem cell transplant it would be.
I decided to make the news fun. Rather than wait for the hair fall out like last time, I’d go right to mohawk thanks to sister skills. And rather than beat myself up on physical tasks, I dedicated myself to just movement. Getting more rest, eating more, and not beat myself up to workout. This made the chemo more bearable, and eating fun again. Much like the first go around, I kept to doing things like getting out to see people and doing short social events. Remember purpose lends itself to completing the goal. I’d be able to take treatments in town, another plus. One thing was evident from the trips to University Medical center, not being at home sucked. Because of the cycle rotation, I’d have to stay home. It wasn’t easy to fight boredom, but I pressed forward with work or crazy tasks around the house. Cancer was not holding me back from fun.
I was 2 years into the process now. The next few months of scans would determine my life. I had put in the work, felt great, and for the most part felt cancer free. The months past by fast. In November of 2017 I got the good news, finally clean. Not a trace of any active cells. It was the first time I had been 100%. As a reward, the last thing left to remind me I had been sick, a port, was approved to be removed. What wait? I can get rid of my port. It was my life line. It made all the test and treatment easier. I no longer needed this device. Two and half years later, a weight had been lifted. The real question is how to move forward.
So where am I? A little lonesome. Being selfish for 2.5 years takes its toll. A new found love for using clippers over scissor to cut my hair, still short. An appreciation of family and friends, a ton of gratitude to those who supported me. But not so happy for the not so optimal weight, and inability to run a full mile now. So the real journey begins again, staying well, keeping mentally focused, and physically challenge myself. It won’t be easy. I remind myself, I beat cancer, twice. Losing a few pounds and getting a 6 pack back will come in time. I’m alive. I have a goal. I have purpose.