Tuesday, February 6, 2024

Running With Cancer: One Dude's Journey with Lung Cancer

Running With Cancer

One Dude’s Journey with Lung Cancer

One year ago today, I was sitting at home and my phone rang. It was the pulmonologist. She said, "Are you at home?" I said, "Yes, " feeling in my gut that this was not good news. Then she asked, "Are you alone?" I said, "No," as my gut sank even further. Her next words were, "Your biopsy results show you have adenocarcinomalung cancer." I went completely numb. I wasn't emotional or falling apart, just numb. The doctor was very kind and I'm sure she said more to me, but all I remember are her words, "You have lung cancer." Eventually, I heard her explain she was setting up an appointment at the Wesley Long Cancer Center with an oncologist. 

What the hell? I’m a runner. Been a runner for 40 years. Runners don’t get lung cancer. I’ve never smoked or vaped. Ever. Not even a puff. Nonsmokers don’t get lung cancer. I live a healthy lifestyle. I run and exercise several times a week. I eat pretty healthy. People who live a healthy lifestyle don’t get cancer. There’s no obvious link to lung cancer in my family history. These are all thoughts running through my head after I hung up the phone.

To help this make a little more sense, I’ll back up a little, back to late December 2022. Just before Christmas, I noticed I was getting a cold and a mild cough. I did several Covid tests, and the results were all negative. I just figured it was a little touch of the crud going around. 

For the past several years, on Christmas Eve morning, I’ve hosted a group run for my runners. I was planning on running the 6-mile route. During the run, I had no energy, and I was a bit short of breath. My buddies I normally run with were well ahead of me. I only made it 5 miles and walked part of the last mile. I was a bit perplexed, but I attributed it to the crud. After Christmas, my cough continued to get worse, so I called my GP. They had no openings, so they sent me (virtually) to the Walk-in Clinic (keep in mind, because of the whole Covid thing, it was a phone-in, not a walk-in).  The nurse practitioner, thought I had a sinus infection. I have them periodically, so it seemed like a pretty accurate diagnosis. I was prescribed an antibiotic. After a week, I was worse, and I was completely out of breath just walking up the stairs to the second floor in our house. I called the doc back and requested an in-person visit. I was sent to the Walk-in Clinic again, but this time, I actually got to walk in. After an initial exam and listening to my breathing, the doc thought I may have pneumonia and did an X-ray. 

The doctor returned with the scan and a furrowed brow. He showed me the scans and I could see that my lungs were filled with what looked like cotton balls. The doc explained that this wasn't pneumonia. He said he was concerned it was cancer and that he was sending me to a pulmonologist who would do more tests. Only problem, it would be about a week before he could get an appointment. I learned very quickly that waiting during this whole discovery process was almost as painful as the cancer itself. Luckily, one of my runners who works at the pulmonology center was able to get me in the next day. 

The pulmonologist did a CT scan and confirmed that she also thought it was cancer. The next step was to determine the specific type of cancer. Initially, she thought it might be melanoma. In the past, I've had two melanoma removed, and because of that, it was a possibility it could have spread to my lungs. The doctor explained she'd need to do a biopsy to accurately identify the exact type of cancer. This time it was a week that I had to wait. Tik Tik Tik....I know lung cancer is not good. All sorts of things are running through my head. The biopsy went well, and it was almost another week later when I received that phone call, "Are you at home? Are you alone? You have Adenocarcinoma-lung cancer."

Seems like it was another week before I met with my oncologist, Dr. Mohamed. He told me
and my wife that I had Stage 4 Lung Cancer. It was in both lungs, more heavily concentrated in the lower right lung. The numbness crept back in. I remember the room beginning to blur-out to me. 

Dr. Mohamed was supportive, but very direct, saying this was not good. As my head began to clear, I asked the doc how I could have possibly gotten lung cancer. I’m not a smoker. I’m active, fit, and live a healthy lifestyle. He said about 20% of those who get lung cancer get it by being exposed to environmental factors such as being exposed to radon, asbestos, second-hand smoke, diesel fumes, extreme pollution, etc. None of which pertained to me. (We even got a radon tester to check the radon levels in our house and that wasn't the issue.) Then he said that for about 2% of those who are nonsmokers, there is no apparent/obvious cause. That was me.

Dr. Mohamed explained my treatment options. There are typically 4 treatment options: surgery, chemotherapy, immunotherapy, and targeted therapy. Because the cancer was so evasive and in both lungs, surgery was not an option. (Down to three options.) Because I also have ulcerative colitis, immunotherapy was not an option. My colitis has been pretty much under control for several years, but because of that history, immunotherapy was not an option. (Down to two treatment optionschemotherapy and targeted therapy.)

Dr. Mohamed explained that Targeted therapy is a new therapy only available the past 2-3 years.  Targeted therapy does not work for everyone. It depends on whether the cancer itself has a specific genetic mutation. Nonsmokers who get lung cancer have a higher chance of the cancer having this mutation. If the mutation exists, then there’s a possibility that the mutation will have one of 11 different biomarkers. If it has one of these biomarkers, then Targeted treatment is an option. Biomarkers are what allows the cancer to grow and spread not only within the lungs but to other parts of the body and other organs as well. The treatment targets the specific biomarker keeping it from allowing the cancer to grow and spread, and helps to shrink the cancer.

We did the needed testing. To be prepared, in case the testing revealed my cancer did not have the genetic mutation and bio marker, I was slated for my first round of chemotherapy for the following Monday. Before the results came back, I also had a PET scan and a Brain MRI to see if the cancer had spread to other organs or other parts of the body. The results did show some cancer in the lymph nodes in my neck but otherwise it was localized within my lungs. While driving home one night with my wife after one of the scans, I got a phone call. It was Dr. Mohamed! He didn’t want to wait nor make us wait to tell me that he had received the results and my cancer did in fact have the genetic mutation as well as the best biomarker of the 11 (EGFR) and the best sub level marker (Exon 19), making it a best-case scenario for Targeted Treatment.

Soon thereafter, I began Targeted treatment with Tagrisso. It arrives at my house once a month in a Hazard bag. No one is supposed to touch it but me. Sounds scary, but it’s not. After the first week of treatment, I could tell a difference. It felt like one of many weights was lifted. I could breathe better. Now, after almost a year of targeted treatment, I’m doing so, so, so much better!

I started treatment at the beginning of March of 2023. By the end of March, I was able to start running again. I started with 1 mile. Each week I added a half mile to the run. It wasn’t pretty and it was slow going, but I made progress. In April of 2023, I ran in a 5K. I just wanted to know I could do it. It wasn’t about pace. It was about completion.

Adjusting to the “new normal” has been a challenge. When a 4-miler takes the same time you use to run a 6-miler, it plays with your head. I used to be a fairly speedy runner. My half marathon PR was a 1:30 and some change. I often tell my runners coming back from an injury to “Start where you are, not where you were, and you’ll get where you want to go.” I’ve reminded myself of that quite often over the past year. I’ve also come to realize that where I want to go, isn’t going to be where I was a few years ago, and that’s okay. I’m just so grateful to be able to do the things I love to do. Since that first 5K after starting targeted treatment, I’ve run two more 5Ks and a 10K. I even placed in my age-group for two of the races.

There are some side effects related to my targeted treatment. I’m very lucky that mine aren’t severe. The main side effects I deal with that affect my running are fatigue, muscle soreness, slowed recovery, muscle cramps, balance issues, and often intestinal issues. It also causes very dry skin, dry mouth, and brittle nails. All things I can definitely deal with.

Looking back, one of the things that really kept me focused on beating this cancer was not dwelling on the statistics. Actually, I just recently looked up the life expectancy stats for lung cancer. Here’s what I found:

In 2023, approximately 238,340 adults in the United States were diagnosed with lung cancer. 20% of all cancer deaths are caused by lung cancer, the biggest cancer killer worldwide. The national average of people alive five years after a lung cancer diagnosis is 26.6%. Just 19% of those diagnosed with stage 4 survive more than 12 months. According to the American Cancer Society, those with stage 4 non-small cell lung cancer (NSCLC) have a five-year relative survival rate of 9%. (Info from, The American Cancer Society, The American Lung Association, AstraZeneca and The Lung Foundation)

I have to say, I was quite taken back and glad I chose not to focus on that. My oncologist was the same, he focused on treatment and beating this cancer. Another factor in fighting this disease is the fact that I’ve been in good health the majority of my life. Being a nonsmoker increased my chance of having the genetic mutation. Also, being an otherwise healthy and fit individual has helped me so much in recovery. I know some may say, “Why bother? Look he’s fit and never smoked, but still got lung cancer.” But, I know I would not be as far along in recovery as I am now without having been a fit and healthy person. I am positive that being healthy and fit at whatever age plays a huge impact when thrown a curveball like cancer or other disease. Healthy and fit doesn’t mean being in the gym every day or running excessive miles. It does mean moving several times a week. It also helps with mental health which also takes a beating when going through something like cancer treatment.

A third factor bolstering the positive trend of my recovery is the support of so many in my immediate and extended family as well as my running family and community. That support has meant and continues to mean so much to me and I’m convinced that it has played a huge part in my recovery.

So, what lies ahead? Well, I’ve started training for the Coast Guard Half Marathon in late April. This training is much different from any other training I’ve ever done for a race. A major difference it that I have no written plan. Why? Because I have learned that my body will tell me each week what I can do. Having a written plan that I'm not able to follow week-to-week would only frustrate me. I try to run three days a week, but that doesn’t always happen. Some weeks, fatigue is a huge factor affecting whether or not I can run. My recovery time is much longer now. I need at least one recovery day in between each run, but often I need two or three. Training paces are not a factor either. Some runs I feel great and run with relative ease and other days, I’m a minute or two slower. I never really know what to expect, and I’m okay with that. I wasn’t initially, but I’ve come to realize how lucky I am and I appreciate every run. Accepting the new normal doesn’t me you’re not moving forward, it just means that forward movement is a bit different.

Targeted treatment isn’t a cure, but it’s a way to extend my life as well as the quality of my life much longer than with more traditional treatments. I'll continue to have CT scans about every three months to check  progress. My next scan is later this month. There can be long term effects related to the treatment for which I’ll continually be monitored. It’s actually a miracle that I’m here one year later. Three days ago, I celebrated my 59th birthday. A year ago, I didn’t know if that would be possible. I guess you know what my birthday wish was and it will remain the same wish for years to come. I’ve got too much life left to live! Hope to see you out on the run! Trust. Believe. Conquer! 

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