In part one of this blog, I discussed in detail everything leading up to being diagnosed with Leukemia. There was a lot of amazing feedback from part one, and I want to thank everyone who reached out, as it meant so much to me and my family. If you haven’t read part 1 yet, start here.
The main reason I wanted to share my story is because I feel like it can help someone that may be in my shoes, or have a family or friend that is dealing with something similar to what I have dealt with. Part 2 will go into detail on what happened after I was initially diagnosed with cancer, along with my journey with cancer over the past two years.
Friday November 13th, 2015
The next call I needed to make was to my parents.
I called my Dad first. Since I hadn’t been to my first Oncology appointment yet, I didn’t want to spend too much time playing the guessing game with him. I knew he would have a lot of questions for me which I wouldn’t have answers to. That was ok.
I can remember my Dad telling me something to the effect of, “You know you can’t die before I do, that would be just wrong! This might be a big uphill battle for you, but I didn’t raise a quitter, and you have never quit or given up at anything.”
He was right, I don’t remember the last time I ever quit or gave up. At anything.
Back in high school almost 20 years ago I was benched my entire junior year during basketball. This was one of the toughest times in my athletic life, and this had a big impact in my future endeavors. Basketball was an early love of mine, and I truly thought I would play in college, thought I would have a late growth spurt, something to at least have the excuse to keep going. But none of that would happen. I could have quit basketball, and all sports for that matter but I didn’t. I made a decision after that year of “riding the pine” to compete in an individual sport that I had more control in – Track and Field.
My dad was the one that reminded me that the first person to cross the finish line and the furthest throw marks the winner. Nothing subjective about that. He had experience throwing the discus and competed in college, so I thought why not? So, between my Junior and Senior year in high school I went “all in.” I ended up strength training 6 days a week and gaining 30 pounds of muscle and I completely changed my body for my new sport.
This was the best move I could have made because it turned into a Division I College Track scholarship, a great education, and a chance to compete at the highest level internationally in the sport of Bobsled for 6 seasons. It all started at age 17. If I hadn’t made that one move my junior year of high school, this path would have never come. Did I quit basketball? No, I don’t feel like I quit. I feel like I transformed as an athlete and as a person.
Fast forward to almost 4 years ago to my life as a father and a business owner. I was coaching and training full time, and now turning other people into their best selves was my top priority. As the business grew, so did some of the problems. I was realizing that renting space out of another facility, while trying to run my own business model, had its own set of challenges.
The straw that broke the camel’s back was when the owner of this large gym forced me to leave – this was two days before Christmas. Professionally, this was one of the hardest moments in my career. But instead of quitting I opened up my own space in the matter of three days. What I learned is that we are always going to run into situations that are beyond our control, but how we choose to react to those situations is what matters most.
My Dad was right, I never quit at anything.
Ok, back to my next phone call to my Mom. My mom, about 2 years prior to my diagnosis, had her own very traumatic event. She had a serious stroke and almost died. It caused her to be legally blind, but besides that her brain has fully recovered. As I told her what was going on, I assured her that what she had gone through was way worse than what I was about to enter in to. My mom is a very emotional person, so I knew she would take this very hard. And she did. She is also someone that will worry herself to death. I mainly wanted to reassure her that Leukemia wouldn’t be the thing to take me off this earth. I promised to give her weekly updates on my condition after each appointment, and I did.
I remember the first appointment with my Oncologist very clearly. It honestly felt like I was in the wrong doctor’s office. Everyone in the waiting room was either in a wheelchair or over the age of 75. My wife, Amy was with me and we saw very quickly that I was an outlier.
Getting called back to my first visit, and now being on about my 50th visit to a hospital in almost 2 years, I realized that not a lot changes with each visit. It always starts with the nurses taking my vitals, then a blood draw to check my liver enzyme levels and white blood cell count, among many other blood markers.
I have never been a fan of needles, so I asked the nurse if I could lie down, since I would more than likely pass out if I was sitting up in a chair. Even after 50+ blood draws, this is still what happens to this day! I guess you could say I have gotten used to the routine now and so have all the nurses.
Once you get your blood drawn, it’s a long 20-30 minute wait in the doctor’s office to see your results and for the doctor to go over it all with you. After my first lab tests, it was clear that they needed to do additional tests – a bone marrow biopsy – to see how progressed the Leukemia was and to see if it was in the bone marrow. If it was, that would give the doctor a good idea how progressed my cancer was.
My next visit was to have the bone marrow biopsy, nothing I recommend ever having done if you don’t need to! Remember, I said I wasn’t a fan of needles. Not to go into too much detail, for those of you that are like me, but this felt more like a drill than a needle, since they need to extract a “core” sample from my bone – the posterior superior iliac spine, or that bony part of the back of your hip. They numb you up real good, then get after it. Needless to say I was pretty sore for about 3-5 days after the procedure.
The results came back and the LGL Leukemia cells were not only in my liver, but also in the bone marrow. The doctor tried to explain to me how rare this was to have it in the liver – so rare he said I was only one of 40 cases known in the United States in the last 10 years.
It made me feel like I won the lottery, the cancer lottery! He said the most important thing was to lower my liver enzymes, since I was living at 10-12 times the normal levels, and this could cause damage and scarring of the liver, to even liver failure.
I started treatment right away. Performing any type of infusion based chemotherapy was risky, and because the cancer cells had manifested in my liver, they went with giving me an oral chemotherapy drug. The drug was a catch 22 though…it was used to treat blood cancers but it could also cause liver problems. But the doctor assured me that we would run blood work every week for the first 6 weeks to make sure that didn’t happen, since the goal was to kill the LGL cells in the liver and not the liver itself.
After the first 6 weeks my enzymes started to drop ever so slightly, then there was a bit of a leveling off. I still had higher levels than normal, so I continued to take the medication. After about month 4, my enzymes spiked again very high. So high the doctor was really concerned and took me off the oral chemo.
At my next appointment, in August of 2016, the primary oncologist I had been seeing for almost a year now told me he wasn’t confident he could help me. This was a big surprise to me in a lot of ways. First, I have never been to a doctor that has been so honest to let me know and actually say, “Hey, I am really stumped here, I am going to refer you to another doctor.” Usually, you as the patient need to go out to get second opinions for a condition. This is not initiated by the doctor but by your own inclination to just have another opinion. I didn’t need to do that, he did that for me, which was very refreshing. Secondly, this really got me thinking:
“Well, this cancer specialist has no idea what to do next with me. What will the next doctor do? Will they even be able to help me?”
Fast forward to September 2016 when I had my first appointment with my new oncologist at The Huntsman Cancer Institute. When I walked in the doors, there was a completely different feel. The level of compassion and care seemed to be very high. I learned at my first appointment that I would have three nurses I could call 24/7 – three! That was in addition to my doctor.
I also learned that based on my symptoms and my most recent bloodwork, I may not even have Leukemia at all. They were fearful that I may have a serious stage of Lymphoma, or T-cell Lymphoma. They scheduled me the very next day for a PET scan (positron emission tomography). This is an imaging test that allows the doctor to check for Lymphoma, or any other disease in the body. The scan uses a special glucose dye that has radioactive tracers. These tracers are injected into a vein in your arm. Your organs and tissues then absorb the tracer. The cancer cells often use more glucose than normal cells, which can help determine how fast the cells are growing.
After my Huntsman appointment, I had to Google this new turn of events, even though my doctor said not to jump to conclusions. An important part of figuring out a condition is also figuring out what it isn’t. As I searched, I learned very quickly that “T-Cell Lymphoma” is far more serious than “T-Cell LGL Leukemia” or what I was initially diagnosed with. If I had in-fact had Lymphoma and not Leukemia, that meant I would be at a Stage IV cancer and admitted to Huntsman for chemotherapy and potentially a stem cell transplant.
I should not have looked it up.
My wife and I arrived at 6am the next morning for my PET scan which wasn’t until 8am. They took me back around 6:30am and prepped me. I sat in a “quiet room” for up to an hour and a half to allow the die to get into my body. I had to fast that morning and when I stood up to go to the bathroom I remember almost passing out. As my wife knows, I need my breakfast!
The PET scan came back negative for any Lymphoma. What a relief!!! So now we’re back to T-Cell LGL Leukemia but I still had symptoms that were unusual even for that. So more tests. A second liver biopsy and a second bone marrow biopsy confirmed the cancer did manifest in my liver (very rare for LGLL- or Large Granular Lymphocytic Leukemia) and the cells found in the bone marrow showed involvement like what was in my liver. Which still pointed to LGLL but the doctor said the presentation was weird since my blood counts were otherwise pretty darn normal. So getting my liver enzymes down still remained their biggest concern.
The line of treatment the doctor wanted to put me on was a “long term oral chemotherapy.” The drug, Cyclophosphamide, had many side effects. Besides mild and severe nausea and fatigue, there were potential birth defects that would occur – that wasn’t an issue for Amy and me, since we weren’t planning on any more kids. The other part was I couldn’t be on this oral chemo treatment for more than one year. The goal – decrease liver enzymes and keep white blood cells and other cancer markers high enough to stay on the medication and in one year’s time be in some sort of “remission.”
All that remission means is that the cancer isn’t kicking your ass anymore, not that you are “cancer free.” With Leukemia or blood cancers in general, you’re never “cancer free.” They can always come back and sometimes be worse than before.
In any case, I started this new line of treatment in October 2016 and go in monthly for my check-ups. At first, there were not very big changes in the lowering of my liver enzymes. But by March of 2017 my levels started to drop pretty drastically and the doctor was very happy with my bloodwork every time we met.
My symptoms of fatigue (mainly as a side-effect from the medication) started to get much better as I hired and coached more of my staff to take over a lot of my duties at the gym. This allowed me to take better care of myself – sleep, nutrition, and time with my family – all of which helped me in my treatment.
(Roman, 3 and Dean, 4 are my top priority in my life!)
In the middle of May 2017, at one of my check-ups, I asked the doctor if I could train pretty hard again for what was going to be a summer Bobsled Combine – I figured this could be my last opportunity to show my sons what I did as a competitive athlete – and for me to get excited about training for something again. She said yes, as long as I listened to my body and didn’t overdo anything stress wise.
The day after that appointment, I planned out a 3 month training plan to prepare for an August Bobsled Combine – which included sprinting up to 45 meters, a broad jump and a shotput toss. These were all things I had done in the past, and things I was confident I could train for and do well.
The training has been going great, I feel stronger and faster than ever – even 10 years ago – and now at the end of July, I am in a position to be ready for the combine.
My liver enzymes are almost at normal levels, just barely 1.5 to 2 times the normal levels. The doctors and nurses suspect I will be able to get off this medication at the one year mark, or by October. Then they will start to track where I am at every month, then hopefully every 3 months as things look better and better. Per my doctor, this would look like a form of remission for me.
Moral of this story:
I haven’t allowed my condition to stop me from pursuing the things in life that I love. I love competing. I love helping people. I love helping my staff to realize their goals in life and in their career. I love my wife. I love my kids. I will never stop fighting. I will never quit. I know that one day my condition could get worse but I choose not to focus or worry about that right now. I decided almost 2 years ago when I was diagnosed, the best day of my life was this one. Now, when people ask me, “How’s your day going?” I say, “Best day of my life!”
This quote sums it up for me and I am striving to do this daily.
“The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.”