Monday, 22 October 2018

My Lymphoma Journey

Looking back on this past year I sometimes feel like I am looking back on someone else's life and experiences. According to how doctor's measure lymphoma remission, mine started just after my final chemo treatment was finished in April, and so I've technically been in remission for around six months, but it feels pretty new to me. I've had lots of time to think and reflect and wonder about it all.

In February 2017 I had a full body x-ray. I was seeing a chiropractor, and he wanted to get a good idea of what my spine looked like etc. At that time, I wasn't made aware of anything abnormal. The only reason I point this out, is because the next x-ray I had, in November 2017, picked up a mass in my chest 11cm x 8cm in diameter. The difference in a mere ten months is astounding.

People often ask what symptoms I had, how did it all start?

I can remember as far back as March, and between March and May of 2017 the things I experienced could have been symptoms, or they could have been random, but I remember that at night I could feel a slight pressure in my chest. It would made me cough a dry, breathy cough. But, the cough was intermittent, and the pressure/discomfort in my chest only happened at night, and I didn't really recognize it as anything significant. As the months progressed, I began to be tired, at first - tired at night, I fell asleep quickly and slept all night long (which is probably why I didn't recognize that pressure in my chest, I didn't spend a lot of time thinking about it). From there my tiredness increased. In the evenings I had no energy left from the day, and I would fall asleep in front of the TV, then wake up and be able to sleep all night long. The tiredness did progress to a place where I would wake up feeling tired, but that was closer to when I was diagnosed.

Another thing I experienced that I now believe was connected, was I had developed severe pain in my legs and feet, that increased over the months of about May - Sept. to a place where I could barely stand to walk. Walking was so painful, that getting anywhere was a chore, and I excused the fact that I was consistently out of breath on both my weight, and my very sore feet. On our small family vacation in July 2017 I had an excruciating visit to the museum in Drumheller and the Calgary Zoo. I could walk, but only short distances before I was fully out of breath, and the pain in my legs was nearly crippling. But, I got myself some shoe inserts, and kept expecting that the pain would eventually subside. I was still coughing, and in August, I began to feel something in my throat. It felt like something was always caught in there, and I had to constantly try to clear it out. Still, only a mild irritation, and all things were disconnected in my mind, and so I didn't think to talk to a doctor about it.

The cold I had persisted, and in September the "lump" in my throat was becoming more pronounced. I had to swallow food twice, and I was starting to feel itchy. When I ran my hands over my abdomen, I would end up scratching and scratching. Each of the symptoms I mentioned never fully subsided, instead, more things just kept adding themselves on. By mid October I was feeling constant pain, like a pulled muscle in my shoulders and central back. Even visits to the chiropractor were not helping. I have a condition called SVT, where my heart will beat very quickly now and again, and I have to have a short rest to get it to slow down.  Episodes of a racing heart were happening more frequently, and they seemed different from my regular SVT. During another trip to Calgary I was in the pool with my kids and hit my knee on the tiled edge of a seat. My skin split open, and the cut bled significantly. I can remember being surprised at the time to see so much bleeding from such an insignificant cut. At the same time I noticed a large, very dark bruise on my side. I could not remember an injury that would have caused such a huge bruise, and it was about that time I started to feel a lump in my left thigh. Also around this time, I was exhausted, even getting up the stairs at my house was a chore and I was coughing almost continuously. To top it all off, I was now struggling to swallow water, my chest was tight and painful and I was exhausted. It was a day's worth of energy to walk from one side of King's campus to another, which is not a big place.

I went back to a Doctor at the walk in clinic, and though I did describe my symptoms, I sometimes wonder if I could have been more clear. I was diagnosed with Strep Throat. The antibiotics seemed to help a bit, and I was just nearing the end of my cycle of drugs when I noticed a firm but movable lump in my upper thigh. Very concerned, I went back to my Doctor. I had been worriedly pressing at my leg before my appointment, hoping that the lump had disappeared, and when I showed my Doctor she actually got quite upset with me. My entire upper leg was bruised. I was merely pressing, and bruising almost instantly. She thought I probably had a lipoma, and wanted me to get an x-ray at my next opportunity. I had also started coughing so violently at night, that I was vomiting, and so it was about two days later that I was getting ready for a shower and noticed a tight, hard lump about the size of a dime in my groin. I showed Brad, and we decided that I should point it out when I got an x-ray in a few days time. That night, at about 2am, I woke up in extreme pain. The lump in my groin had grown from the size of a dime to the size of a large lime. Convinced it was a hernia, we sped off to the emergency room.

Looking back on all of those symptoms, it seems laughable that I was "surprised" when the Dr. came back to tell me that they had found something suspicious on the x-ray. But, I think that it's hard to keep track of symptoms when you're going about your day to day life experiences. In health, I've always had different symptoms now and then, they resolve, and a person moves on. I do remember just before I was diagnosed, I was feeling pretty awful, and I said to Brad, "I don't think I'm ever going to be normal again." I'm also a serial googler, and I looked up my symptoms all the time. I know I came across lymphoma sites, and though I could relate to some of the symptoms, I couldn't relate to them all, and because lymphoma is rare in 30 somethings, both me and my Drs missed it. I've generally accepted that it's no one's fault. Do I wish I caught it earlier? Yes. All the time. But, we caught it, we treated it, and hopefully we've cured it.

I spent about four very uncomfortable nights in the hospital before my biopsy. My symptoms increased, and I was trying to adjust to the idea of having cancer. It was like life was coming to a full stop, and something different, something unrecognizable was starting. My mom dropped everything, her entire life, and was here in Edmonton. The two weeks before being referred to the Cross Cancer Institute were probably the worst of my life. The itching had increased to a fervor, and I was scratching so much my skin was bruising, bleeding and coming off with the scratching. I felt like the itch was down in my muscles. I was coughing all the time, and could hardly eat due to the fact that I couldn't swallow. I was coughing and vomiting, and couldn't take a full breath. Brad said he often laid awake at night worried I would stop breathing. I couldn't get up the stairs, and I was having bouts of the chills.

I was admitted to the hospital at the beginning of December for my first PET scan (Stage 4, DLBCL) and first round of chemo. My Doctor told me that untreated, I had about six months left, and that even with treatment I would likely have to go through radiation treatments once chemo was finished. I was pretty much ready to agree to anything. Lymphoma is different from other cancers because for most people, chemo makes a person with cancer feel sick, but with Lymphoma the symptoms are so severe the chemo alleviates them very quickly. I was feeling so rough from the Lymphoma, the first round of chemo was quite literally a relief. I was given the standard R-CHOP, five chemotherapy drugs: Rituximab, Cyclophosphamide, Doxorubicin, Vincristine, and Prednisone. Prior to about 2007, Lymphoma patients were typically given the CHOP drugs, but when Rituximab was added Lymphoma survival rates began to increase. Initially I had a common reaction to the Rituximab, it made my head itch, but Benadryl was my savior. My symptoms decreased significantly, and throughout the six chemo treatments if I followed the prescribed recommendations, taking drugs when I needed to, I was nausea free and was able to continue life in a relatively normal manner. During this time we fixed up, and made some minor changes to our house, got it sold, found a new place and moved in. At my concluding PET scan I had achieved a complete response. It was nothing short of a miracle.

The chance that someone under 40 gets lymphoma is about 10 in 100,000. So, in a way I won a pretty crappy lottery. But, in another way, I won a really important lottery. I was presented with a drug study for Lymphoma. It was a study of about 45 adults all over the world. After being treated with chemo, I was given a drug infusion that lasted 24 hours a day for 8 weeks. I am being studied to see if this drug will help to prevent a relapse. Though relapses are fairly uncommon in Lymphoma, they happen in about 15 - 30% of cases. The drug moves through your body attacking both active and dormant cancer cells. I was the first person in Canada to receive this particular drug for Lymphoma. I hope that this study will result wider government approvals.

I've been out of treatment now since the end of June. I am very hopeful that life will continue normally. I feel like I've only really scratched the surface - but I want to remember as much as I can. I hope that I can help others, who may be experiencing lymphoma right now. I am so grateful for my Doctors, Health Professionals, The Cross Cancer Institute, The Lab Technicians, The Nurses, the Canadian Health Care System, they saved my life.

People often wonder what to say to the individuals impacted by cancer. In my opinion, it's showing that you care. That might mean sending kind words or a meal, and finding out how you can be involved in finding a cure for cancer, means the most.

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