Diagnosis

This is one of my promised catch-up posts.. Here’s how it all went down. This is a long read, so you might want to make some popcorn, put on your happy pants, open a bottle of wine, light a candle, or whatever works for you..

In April, 2016, Rachel and I took a trip to Europe. We both had some work in London, then we met friends in Paris, then I worked in Dublin while she did some sightseeing. It was a great time. When we got back, I had some awful neck and chest pain. I couldn’t move my neck for about 2 weeks, but it slowly went away over time. My back also started hurting shortly thereafter.

A visit to the doctor about the chest pain, I was diagnosed with costochondritis. That was what I self-diagnosed myself with before the appointment, so I felt confident that were on to something. Costochondritis is an inflammation of the cartilage that attaches to the rib cage and sternum. I didn’t realize that the sternum is actually a joint. Unfortunately, the way you treat Costochondritis is with anti-inflammatory NSAIDs (ibuprofen, naproxen), joint pain cream on the sternum, and most importantly time. You wait it out and hope it gets better. It would go through periods of getting better, then getting worse, and sometimes super painful.

I started going to a chiropractor in May. I was in bad shape. I had a few adjustments that went ok, and then on my 4th visit something popped in my back during an adjustment that hurt badly. I came back for another visit, and the next time, it was even worse. I stopped seeing the chiropractor after that.

In July, my chest pain was bad again, and I went to get an x-ray. My wife pointed out a lump on my chest that I also asked the doctor to check out. At this point, I wasn’t convinced it was a lump. The doctor said it was nothing, and nothing came back from the x-ray.

Back to the drawing board, I went for a physical in August. My bloodwork was immaculate. I was referred to a Gastroenterologist to evaluate me because of some reflux and constant coughing/throat clearing (which we figured was causing the costochondritis). I had an endoscopy, and everything came back fine except for some signs of light acid reflux, and I was prescribed some PPI antacid medication (which I was already taking anyway).

After another month of taking it easy, my wife, parents, and I went to Hawaii for my birthday. My step-dad and I went golfing, and on like the 3rd or 4th shot my back popped again and I was in really intense pain. Like a dumbass, I finished the round — probably shooting 125 or so. Every shot hurt, it was like Tiger Woods in 2008 when he won the US Open with a broken leg and knee, except the golf was much worse and I didn’t win 7 figures. I could barely walk for the next two days. Not being one to let something like a broken back get me down, I set a goal to catch a wave on Waikiki Beach on our last full day in each of the disciplines: Surfing, Paddle Surfing, Body Boarding, and Body Surfing.. It took all day, and I looked like an old man trying to stand up on the surfboard, but mission accomplished. Rachel and I also had a blast renting scooters and riding them around the island. I also had a great time watching Rachel discover Musubi — her favorite food now.. I don’t eat that crap. :)

At this point my chest was ok, back was awful, my left shoulder was killing me, and I went to the doctor again, who referred me to a surgeon, who wanted me to do an MRI of my chest because of the lump, which had gotten bigger. (we thought it was either cartilage or a lipoma)

At some point around the first week in November, I developed some pain in my left leg, which manifested itself in the form of a gangster limp. I went to physical therapy as referred by a doctor. It seemed like the pain was either in the bone itself, or was being referred by my back pain.

The MRI appointment was rescheduled by a couple of weeks because the machine was broken, so on Nov 18 we went to get it done. For those who have not been in an MRI, I want to point out that the tube is WAYYYY smaller than it looks on TV. I found out that I’m pretty claustrophobic and had them stop the MRI after literally 30 seconds. F-that. They offered me sedatives, but honestly the prospect of going in there under sedation was even scarier than being in there for 30 minutes completely sober.

I had the surgeon reschedule it as a CT Scan, which is a slightly bigger tube. Before I could get to the CT Scan, though, my back started hurting badly so I had my primary care doctor prescribe an X-Ray.

The Saturday before Thanksgiving we had an early Thanksgiving dinner at Rachel’s family’s house, and that would be the last day we ever saw our favorite little guy:

I left the dinner at around 6pm to go home, and he passed away at around 9pm. He wasn’t doing so well for the prior few months, and the entire family was pretty down. I figured that he was going to be ok and that I would see him later that week. :(

I went for the X-Ray on the Tuesday before Thanksgiving, and I got the call the next day.

Doc: “Your X-Ray came back. You have a compression fracture in your T12 vertebrae”

Me: “broken back — sounds about right”

Doc: “there’s something else, we see a lytic lesion in the vertebrae. There are several processes that can cause this, but cancer is one of them and I think you should get to the clinic for some blood tests ASAP.”

As this was the Wednesday before Thanksgiving, I got my butt to the clinic immediately and did the blood work. When I got home, I saw that the doctor had also prescribed a full-body PET/CT scan. The order read something like “blah blah blah.. Please evaluate for primary malignancy vs myeloma.” (in a PET scan, they inject you with radioactive sugar. Cancer cells take up sugar quicker than normal cells. After about 45 minutes, they scan you and check to see where the dark spots show up. You really want to see it all in your urinary tract and kidneys because you know that your body is flushing it out and there’s no cancer. If there are dark spots, those usually correspond to cancer cells)

So wow. I either have some Stage 4 solid tumor cancer that has gotten into the bloodstream and my spine, OR I have Myeloma AND I won’t find out for 5 days because of the long weekend.

So quick recap: our dog died, my back was broken, I couldn’t raise my left arm above my head, there’s a big lump on my chest, I’m walking around with a limp, and I’ve probably got cancer but I won’t find out for 5 days. (Until the following Monday)

I read a TON about different cancers over the next few days, and didn’t do much else other than go for some (painful) bike rides.

As Rachel was driving me to the PET/CT scan appointment, I got a call from my primary doctor. I really do like my doc, I don’t like it so much when he calls me:

Doc: “Hi Chris, you’re probably driving to your PET Scan now?”

Me: *nervous* “yes, we’re on the way”

Doc: “Your blood work came back with elevated levels of the Gamma band of Immunoglobulin…… blah blah blah … Multiple Myeloma.”

At this point it was a rush of emotion, but after all the reading I had done I realized that this was the best thing he could have told me. If it were some other form of cancer, it would almost definitely be stage 4 with poor prognosis. I knew that while Myeloma wasn’t curable, they were doing a lot of good things over the past few years.. I explained what I knew to Rachel and we went ahead with the scan.

I waited around for the CD of the PET Scan and learned how to read it when I got home. It was probably 8pm at this point but when I finally saw the PET images it all made sense. All the spots that hurt corresponded to dark spots where the radioactive sugar was being gobbled up by my cancer lesions.

A bit of crying and calling close friends, and I got a visit from my good friend Doug. We had a serious conversation about life, death, cancer, etc. I called more friends, and the next day told some of my colleagues.

My mom flew in from NC either the next day or the day after that. She bought me a cane at CVS and taught me how to use it. It was such a great thing to have that cane, and it really took a lot of my leg pain away. Thanks mom!

I had an appointment with a Hematologist at Stanford the next day. Rachel, Mom, and I packed some food and got ready to spend a long day at Stanford. I gave lots of blood and saw the specialist. We scheduled my treatment to begin on Dec 8. I also had a bone marrow biopsy, which is where they numb you and drill into your pelvis to extract bone marrow. Surprisingly, this was the most relaxing part of the whole day.

Stanford also scheduled an MRI. So where I chickened out of a 30 minute MRI before, I was up against a 90 minute scan now. I was up the entire night sweating it. I popped 2mg of Ativan (it’s like Valium) before the scan, had them put a cloth over my eyes, and everything was cool. I could have easily stayed in there all day, no sweat. :)

I really wanted to get a second opinion before starting treatment, but it was going to be impossible. Lucky for me, I’ve met some really good people here. A few friends made calls to UCSF who I would later learn had a leading Multiple Myeloma clinic. My friend and fitness coach Susan worked with the head doctor several years ago, and she also made a call. They managed to get me in on Dec 8 about 5 hours before I was supposed to start treatment at Stanford. My wife, mom, and I all really liked what we saw and heard at UCSF, and decided to be treated there. While Stanford had a much nicer facility, I wanted to be treated by specialists. I also work in SF, which made the decision even easier. I still tell people that I’m the luckiest person in the world because when I get cancer, I get the particular cancer that happens to have one of the best clinics in the world about 20 miles from my house.

We cancelled the Stanford appointments, scheduled my treatment to begin on Dec 13, and went to lunch together breathing a huge sigh of relief. One of my next posts will detail my treatment plan, all the drugs I’m taking, how they work, the side effects, etc.

Later, the DNA analysis of my bone marrow didn’t show any of the known bad mutations that make Multiple Myeloma hard to treat. This indicates that I’m likely to have a good response to treatment, and it gives me a much better prognosis. I would also later learn that despite all the pain I was in and all of the lesions, I was still in Stage I with no organ damage, also indicating a better prognosis.

So quick recap at this point: world class specialists, great prognosis, super supportive boss and colleagues, awesome friends and family, and the best wife ever. Things were definitely looking up. We had a few stumbles later that resulted in surgeries, but things are going well now.