A New Beginning

D-Day, my diagnosis day, was March 11, 2019, just 19 days before my 55th birthday. It was the day everything changed, when I went from a ‘normal’ guy to a guy with a new normal, and the very narrative of my life changed dramatically.

It was a slow work up to a final diagnosis, and my story started to change in my head in the several weeks leading up to March 11. But, to get there, I have to go back even further.

Twenty-five years ago, my feet and knees began to tell me that I needed an exercise regimen that didn’t include running, so, like many others, I got into cycling, at first just plowing around on a mountain bike as a ‘curb jumper’ to get some exercise, and then graduating to road biking, where I put in a couple of thousand miles each and every year, including 2018. Cycling was a big part of my exercise program, and at times, the only part. Riding the bike kept me healthy and fit, and it allowed me to pretty much eat and drink whatever I wanted, and I usually wanted more and more and more. 

Cycling was something that I couldn’t give up – it was a non-negotiable – so I kept at it even when I developed  hemorrhoids, and I continued on even as those hemorrhoids became more problematic. It wasn’t a painful condition at all, but the bleeding was disconcerting. So, after trying damn near everything, including giving up the bike for two months, I made an appointment with my gastroenterologist in September of 2018 as a follow up to my February colonoscopy, where, in passing, he said, “Oh, and you do have some hemorrhoids.” 

Sitting with his physician’s assistant at my appointment, she stressed that hemorrhoids are relatively normal and that they won’t turn into cancer. So, I had that going for me, I guess. When she asked about bleeding, she asked me how much bleeding I was experiencing, and I didn’t really know how to answer that. I don’t know if it was a lot or a little, but any blood is too much blood, now isn’t it? She asked if I was hemorrhaging, and I told her I didn’t even know what that meant, but it sounded extraordinary, so I guess, no, I wasn’t hemorrhaging. But, just in case, she thought it would be a good idea to get a routine blood test and wrote me a test requisition.

And, that’s where my journey really began.

That first blood test showed I was slightly anemic, with my hemoglobin at 11.9, a bit below the low end of the range (HGB range is generally 11.7-16.7, with the Mayo Clinic advising the normal range for men being 13.5-17.5). It was the first time any high-level blood value of mine had ever been out of range, and the last blood test I had, in July of 2017, showed no indications of any high-level abnormalities. But, as the HGB count was just a little low, we wanted to confirm the count with another follow-up blood test to see if maybe it was a one-off aberration. 

However, before I made an appointment for another blood draw to be tested, I had an accident on the bike. On October 7, right at the end of my 3-4 mile warmup and just at the point where I start to really crank it up, a flat front tire caused my bike to slide out from under me. As I was going down, I thought, “Wow, I’m going down, for the first time in about thirty years.” 

When that thought was going through my head, I was about 45 degrees off the road. The next thing I thought, as my eyes opened and I saw a woman kneeling down beside me with her hand on my chest, was “I’m fine.” I actually said it aloud. The woman, who later introduced herself as Suzie, said, “No you’re not. You’ve been in an accident, you were unconscious and you’re bleeding quite a bit.

Shit.

Suzie and another eyewitness said I was unconscious for about five minutes. I’m not sure if it was that long, but it was long enough to require an ambulance ride to a trauma center, a diagnosis of a severe concussion, three fractures of my orbital bone, and a nifty laceration under my right eye eyebrow.

Good times.

So, the bike escapade drew my attention away from anemic blood values and follow up appointments. Then, the next thing I knew, it was the holidays and a particularly busy time for me professionally. It was December 7 before I had my blood drawn again for testing.

For whatever reason, I didn’t hear back about the results, and, being busy with the holidays, I didn’t ask about them until mid-January. That’s when we received confirmation on the anemic value of September, as the December draw recorded a value of 11.5. 

Okay, so anemic I was. But, why? Test three was designed to be a bit more expansive than the previous complete blood counts, CBCs. Test three was to check for iron, ferrites and the like, to determine if perhaps I was experiencing internal bleeding. The good news from that February 4 blood test was that those values were all within normal ranges. The bad news was my HGB value had dropped to 10.3. Time for a referral to a hematologist. 

In my mind, it was clear the seriousness of my anemia had escalated, so I was Johnny-on-the-spot with my follow-up referral. In addition to my consultation with the doctor, my February 14 appointment featured a number of blood vials drawn for a deep dive into what might be ailing me. Unsurprisingly, my anemia was again confirmed, this time with a HGB value of 11.2. But, that HGB score was the least of my worries.

More problematic was the level of protein markers in my blood. Up until then, my anemia could have been explained away as a result of somewhat “lazy” bone marrow not producing enough red blood cells. The protein markers suggested something different, and a lot more problematic. That’s when my wife Lori and I heard, “lymphoma” and “multiple myeloma.”

We didn’t have a definitive diagnosis yet, and there were still other potential root causes, but in my head I was fairly certain that my particular diagnosis was going to be something ending in an ‘a,’ and something somewhat sinister at that

Careful what you wish for

When my doctor spoke to us about the blood test results and the protein markers, she told us that two very real possibilities were either lymphoma or multiple myeloma. Lymphoma is a curable disease. Multiple myeloma is incurable, yet treatable, and the doc added that “many people live a long, long time.”

So, … great. Two relatively shitty choices. One is curable, but perhaps more deadly in the short-term. The other less deadly in the short-term, but a chronic condition and incurable. 

Is there a third choice? What’s behind that third curtain, Monty?

The protein markers pushed me to two additional tests to begin to narrow down my diagnosis, a CT scan and a bone marrow biopsy. The CT scan was to get a picture of what might be going on in my body, and relative to a lot of medical tests, a CT scan is almost a joy to experience. Compared to a bone marrow biopsy, a CT scan is like Christmas morning, on a beach, holding a winning super lotto ticket in your hand.

Some advice, from me to you: a bone marrow biopsy should not be considered recreationally. It’s not a hobby.

My doctor said something along the lines of “some patients feel 15- to 30-seconds of pressure or discomfort.” 

Ha. That memory actually makes me laugh as I type it out. I knew better, of course, as the test has a certain reputation, and that reputation is much more Darth Vader than Luke Skywalker.

The physician’s assistant, the one who was actually going to perform the test, had a different speil. As she closed the door on the exam room, she said, “You’re going to feel discomfort like you’ve never felt before.” 

Her description was a bit more accurate. 

I’d show a picture of the needle used to insert into bone to acquire bone marrow samples, but I can’t bring myself to it. I have more bone marrow biopsies in my future, and I’d just as soon know as little about this little test of horrors (okay, I’ll grant you, perhaps a bit dramatic) as I can.

Lori was, and continues to be, by my side through all of my doctor visits, and I’m extremely grateful, for this journey can be daunting and exhausting, both mentally and physically. But, I wish she hadn’t been in the exam room for the biopsy. It’s not easy seeing a loved one in discomfort, and I know I didn’t enjoy seeing Lori engulfed in the discomfort of childbirth. Likewise, she didn’t enjoy seeing what I was going through – in fact, she had to leave the room. She described herself as “traumatized” for at least a month afterwards. 

All the tests prior to the bone marrow biopsy were directional, guiding us to a diagnosis through a process of elimination. They provided indicators of what might be the cause, but they were not definitive. You can infer to a great deal of probability, but the only way to really know what’s going on is to get inside where it’s going on and take a look. 

When they took a look inside my bones, it became clear: an aggressive form of multiple myeloma had taken over 90 percent of my bone marrow. 

All that from a hemorrhoid and routine blood test. 

I was extremely fortunate in discovering my multiple myeloma. Often times, patients are diagnosed after suffering fractures from weakened bones, often at advanced levels of the disease. A great many suffer compression fractures of the spine and in determining a root cause, are diagnosed with multiple myeloma. I recently met a fellow patient who went to bed one night measuring 5’ 9” tall. In the morning, when he got out of bed and took his first step, he suffered multiple compression fractures of his spine, and is now 5’ 6” tall. 

Like I said, I consider myself fortunate. This disease was well established in my body, and it would have eventually been discovered. Discovering it before I was too symptomatic allows me to take action. 

Oh, and to close the loop, my hemorrhoids are no longer problematic.

So, I have that going for me.

Which is nice.