Saturday April 9, 2016 — Day 18

Exactly one year ago, I learned I had cancer.

Today, I am 18 days into an allogeneic stem cell transplant I received from the bone marrow of my younger brother, Scott.

My cancer is called myeloma, and in a twist of fate, it’s a disease I have become well acquainted with in my past twenty years as a doctor and scientist.

Multiple Myeloma: A cancer of plasma cells, a type of white blood cell normally responsible for producing antibodies.

I am a hematologist/oncologist at the University of Washington, where I have specialized in bone marrow transplantation for blood disorders, leukemia, lymphoma, multiple myeloma, and myelodysplastic syndrome.

In the past few years, I’ve shifted gears into the individualized role of cancer care. I have been examining my own experiences as a doctor, scientist, and now as a patient to re-define what it means to “do our best” for patients with advanced cancer, focusing on a type of breast cancer called “triple negative” breast cancer.”

To learn more about what I’m working on, see the video of my TEDxTacoma talk below.

Doing our best for cancer — all for one, and one for all: My TEDxTacoma talk in March 2014, about a year before I was diagnosed with cancer myself.

Back to the myeloma. I have been fortunate enough to hear opinions from some of the smartest myeloma experts in the country about how to approach my condition.

Many of these experts think that an allogeneic stem cell transplant for my condition is a bad idea.

Allogeneic Transplant: A procedure in which a person receives blood-forming stem cells (cells from which all blood cells develop) from a genetically similar, but not identical, donor. This is often a sister or brother, but could be an unrelated donor.

But I’m resigned to the reality that almost no matter what decision I take, “some expert somewhere” will be convinced that I’m messing things up.

In the following posts I will attempt to describe how I came to this decision and how I am trying to tackle my disease.

I fervently believe that the sharing of information between patients, researchers and clinicians represents an incredibly important way of advancing our collective ability to understand and treat cancer.

I hope that other cancer patients will find some of the concepts and specific information provided here to be useful in thinking about their own situations. In fact, I fervently believe that the sharing of information between patients, researchers and clinicians represents an incredibly important way of advancing our collective ability to understand and treat cancer.

But first, let me begin at the beginning of my myeloma.

January 2015 — First signs

I began to notice some left hip pain and back pain at the beginning of 2015, but I attributed it to a new, firmer mattress.

Returning to the previous mattress didn’t help, and in the following weeks my hip pain became pretty prominent with walking.

Now there were aspects of this “hip pain” that didn’t make sense. It didn’t actually hurt when I moved my hip, rather the pain was in the left anterior superior iliac spine, a region which, when struck by an opponent’s football helmet, causes an injury called a “hip pointer”.

An illustration of a “hip pointer” injury

Another clue that this wasn’t ordinary hip pain was that my zingy “hip pointer” became unbearably painful with a cough or sneeze.

Over time it hurt more and more when I walked, but I eventually learned that Advil helped a lot, and so with more Advil than common sense I was able to keep going until my doctor, a terrific Seattle internist, Sam Warren, recommended a hip X ray.

That changed everything.

Thursday April 9, 2015–8:00am, Diagnosis

Only as I laid on the X-ray table that next day did it occur to me that this might be a little more complicated than degenerative hip disease.

The X-ray technician left the room, the machine clicked, and an instant digital rendering of my hip appeared on a screen to my left.

In medical school they teach you to compare the left and right sides of an X-ray to look for symmetry. I thought my hips looked okay, but as I leaned back to do the symmetry check, my eyes transfixed on an enormous flattened egg shaped hole with ragged edges in my left iliac wing (on the right of the screen below). This monster threatened to break through the outer rim of my cortex, with only a tiny margin of ratty looking bone remaining.

Within 10 seconds of “the click”, I knew I had cancer.

3:30pm

It was a brilliant, sunny afternoon in Seattle.

I called Sam Warren and told him that I was sure that he would be getting a call from the radiologist telling him that I have cancer, and he called back a few minutes later telling me that the radiologist thought that I had some type of metastatic cancer (i.e. cancer that had spread, i.e. bad).

I was due to pick up my 10-year-old daughter Melisa from choir practice at 6:30 pm and so rather than going back to the lab, I stopped in a coffee shop in Capitol Hill. I tried to call Sibel but she was swamped with patients and couldn’t answer. My mom happened to be in Sibel’s clinic for followup of her own breast cancer, and when she answered Sibel’s phone I told her that there was nothing urgent and we could talk later.

Why was I in such a hurry to screw up everyone’s life?

6:30pm

I picked up Melisa and we went to a restaurant at her favorite dining spot — Seattle’s University Village, where we had a magical dinner (followed by ice cream) before driving home to our new collective reality.

9:30pm

By the time we got home Sibel and my mom had just arrived themselves, and I immediately took Sibel upstairs to our bedroom and told her what had happened. A few minutes later we told Melisa and mom and called our older kids Benny (27), Manya (22) and Elif (20).

Tears, disbelief, tears.

10:30 pm

Sibel called two of our friends — Jeni Spokely the coordinator for Sibel’s clinic in Puyallup, and her partner and fellow hematologist-oncologist, Andrea Veatch, who immediately agreed to meet us at her office at 7:30 the next morning for a bone marrow biopsy.

Bone Marrow Biopsy: The removal and examination of marrow from inside bone. Bone marrow is the soft tissue inside bones that helps form blood cells. It is found in the hollow part of most bones.

Without knowing which type of cancer I had, it was entirely plausible that I might not survive more than a few months.

Sibel examined me and thought my liver was enlarged — suggesting liver mets, further adding to the sense that my time had likely come.

That night was surreal.

As described in a TEDx talk I gave in 2014, “Cancer feels like a punch, that leaves you breathless.”

April 10, 7:30pm

The next morning, Sibel and I arrived in her office in Puyallup for a bone marrow biopsy, where we were greeted by a throng of friends and coworkers, all in tears.

Within a few minutes, Andrea placed an 18 gauge needle in the same side of my pelvis that contained the tumor, hoping to draw out the cells that would provide a diagnosis.

That was followed by lots of tubes of blood taken by the best phlebotomist I have ever encountered — another “Tony”, known for his skill, demeanor and ridiculously contagious laugh. Next we wanted to assess the metabolic activity of my pelvic lesion and look for tumor elsewhere, and this required a test called a PET-CT.

Getting a PET CT typically requires several days of advanced planning for insurance approval and to prepare the radio-labeled glucose.

Being the miracle worker that she is, Sibel got phone approval from the insurance company within the hour and Tacoma radiologist Dr. Joe Sam tracked down a supply of radioisotope, completing my PET CT by noon.

Joe told us to grab lunch and he would be ready for us when we returned. When we came back he told us that he was virtually certain that I had myeloma.

It was the best news we could have possibly hoped for.

On the drive back home we learned that I had an IgA kappa myeloma. Once we got home Sibel called our dear friend and colleague, Pam Becker, a fellow hematologist oncologist at the Seattle Cancer Care Alliance. Pam epitomizes the concept that appearances can be deceptive.

Although mild in demeanor, Pam Becker is a tiger. When Sibel told Pam that I had myeloma, Pam responded incredulously “My Tony?”

That evening she arrived at our house with her husband, Marc Stewart, medical director at the Seattle Cancer Care Alliance, with a bottle of red wine and a Boston Creme pie. That night Pam repeated her mantra that I would be OK, that I would get through this.

As will be apparent here and in the posts to follow, a recurring theme of my experience with myeloma is that I have benefitted enormously from the very best expertise and care the world can provide.

Through much better-than-average connections, income and knowledge, I have enjoyed advantages available to very, very few other cancer patients.

While this circumstance is certainly unfair, and I can’t yet say whether improved access and resources will lead to an improved outcome, I hope that this blog can play a small role in helping to level the knowledge playing field.

While many renown experts for whom I have the deepest respect will disagree with some of my choices; there are few unambiguously right choices, I hope this blog launches a discussion that is educational for all.