Aug. 7, 2018 | By Shalynn Flavell
I was 21, feeling free and, finally, a grown-up. Being raised in Hong Kong and the U.K. — where you're given that freedom at 18 years old — it felt like a big deal. I had just moved back to Seattle after a year in Los Angeles, and I should have been having the time of my life. But, looking back, I can see now what I didn't see then.
I seemed to have had a headache or backache much of the time. I was often tired, frustrated or just not feeling well. All of the symptoms I was experiencing slowly became more frequent and then became constant. I was bruising so easily that my arms and legs often looked like I'd been in a fight or accident, and I was very pale. At some point, tiny red spots started to appear all over my body (called “petechiae” — caused by bleeding into the skin from broken capillaries). Somehow, I also didn't think too much about being terribly out of breath when I walked or exerted myself, or of the pounding in my head that matched the beat of my heart. Even when I was asking my boyfriend to tightly squeeze the back of my neck while we walked so it would alleviate the pounding a little (!!) I still thought nothing much of it.
I suppose it didn't really click until I was attempting to scrub a shower wall one day and couldn't do it while standing up because the pounding in my head was so bad I felt like I was going to pass out. “Hmmm,” I thought. “So, maybe my mum was right. I should go to the doctor and get a blood test.” My mum, by the way, had taken one look at me when I came back from LA and knew something was very wrong. But, I was stubborn. I was just “fine.” I was afraid of doctors, terrified of needles. The idea of choosing to go see a doctor was a real hurdle for me.
Finally I mustered the guts to call around to some clinics to get an appointment. None of them could see me for weeks. I knew that it had to be now, ASAP, or I'd chicken out. At that time — 1991— there were a couple of drive-up, walk-in clinics in the area. So I got my mum, found the closest clinic and in we went.
I told them I needed a blood test and probably some iron pills because I was most likely anemic. I was half-right.
They took my stats, asked questions and drew several vials of blood, then disappeared to take a look. We waited and waited and waited. At some point my mum went to see if they'd forgotten we were there. She overheard the nurse and doctor calling around to several local hospitals asking if they could see me right away. I remember she came back to the room quiet and looking a bit stunned. She didn't tell me what she'd heard until later.
Eventually the nurse came back, handed me a paper bag with my vials of blood and told me to go straight to the ER at the University of Washington Medical Center and that there were doctors waiting for me.
“Huh???? What???” I said. The nurse replied: “Well, this is a bit more than we can handle here in this clinic. Go there now.”
That was certainly a quiet drive. We got to the ER, told them who I was as I handed them the vials of blood. Within a matter of minutes I was on a gurney being wheeled back into the ER, where for the next two hours I was prodded, poked, scanned, siphoned, X-rayed, EKG'd and questioned. And, to my horror, they even attempted to have me put on an oxygen mask.
I had no idea what the hell was going on. I was sure they'd made a mistake and kept telling them so. I wasn't the person they thought I was.
No, they told me, no mistake. You are the person we think you are, and your blood counts are so low we can't even believe you walked in here. They listed off a bunch of numbers and percentages which meant absolutely nothing to me. I had to have them explain what they meant a few times. Still I was confused — likely because I didn't have nearly enough oxygen in my bloodstream to think clearly, let alone walk in there, apparently!
It wasn't until eventually someone told me what I didn't want to ask — or hear — that I understood. “It's likely leukemia or some other similar disease,” they said. “We're going to have to admit you into the hospital. We aren't letting you walk out of here.”
Turns out that was a good thing. That night I passed out in my hospital room, and it hit me like a ton of bricks.
The next morning I started the first of countless red blood cell and platelet transfusions. (Although after the very first blood transfusion I felt like a million bucks! I was sure I could run a marathon.)
It took two weeks after stabilizing me, doing many tests and a bone marrow biopsy for the doctors to give me the diagnosis of myelodysplastic syndrome, or MDS. [Editor’s note: In MDS, the bone marrow does not function normally and does not produce healthy blood cells as it should. MDS often progresses to acute myeloid leukemia.]
Bone marrow transplant: ‘My only chance’
Then the search for a bone marrow donor was on. I was told it was my only chance. Fortunately, I was back living in Seattle so I could get help from Fred Hutchinson Cancer Research Center — the birthplace of bone marrow transplantation and the place to go when you have a diagnosis like mine.
The search for a donor felt like forever, but it was really about 10 months. During that time I felt like a vampire. I had blood and platelet transfusions almost every week because my body was stopping to make them. I was injecting myself twice a day with meds to try stimulate my bone marrow (which didn't work) and doing everything I could to be as well as possible on every other front. I was at the clinic getting blood work regularly, so I had no choice but to work through my needle and doctor terror very fast!
I had made it my mission to do cancer the best way I could — positively. I made it my job to be as healthy as possible, and my body needed help — so I worked on my mindset. I decided that I was going to be fine regardless of what happened with my body. I discovered the power to be OK, no matter what.
Finally an unrelated donor was found: a woman my age (22 at the time of transplant) from the Netherlands. She was not a perfect match but the closest possible match. And so into the Hutch system I went. I was admitted to Room 1111 in Swedish Hospital and stayed for over a month. (Many Fred Hutch patients were at Swedish then.)
I was in a laminar airflow, or LAF, room. A LAF room is a completely sterile environment with a plastic wall to partition you off from people. A wall of fans in the space blows the air out of the door constantly through the plastic doorway. You aren't allowed out. People could only enter fully gowned, masked and gloved and stay in there with me for no more than about 15 minutes. I had no proper toilet or running water, which was a challenge. I had to let go of my sense of pride and modesty, and call on my sense of humor as much as possible.
The transplantation process began: multiple procedures, biopsies, spinal taps, three different types of chemo, countless medications, more blood, more potions, lotions, concoctions and apheresis. I threw my guts up, shed the skin on my tongue, throat, gums and innards. I said bye-bye to all my hair. I had nose bleeds that became hemorrhages, back spasms and burning in my feet that was hard to tolerate. Everything that went into me and came out of me was weighed and measured, though I didn't eat anything for several weeks.
But in all of that, there was Transplant Day: “Rescue Day.” The night of Jan. 21, 1992, my new marrow arrived directly from the airport. I was given the gift of life. It was amazing. It was miraculous.
I was going in with a blood type of O-positive and coming out A-positive. It took two weeks for my new marrow to begin producing cells. All the while I chatted with it, welcoming it to its new home. The nurses probably thought I was nuts. Slowly the marrow started to set up shop in my body and go to work. My counts increased and I had no acute rejection. Incredible.
Life after transplant
A month later I was discharged. I was allowed to go home at night but had be at the clinic every day. A few months later, I didn't have to be there every day anymore. Several months after that I was progressing to weekly, then biweekly visits. A year later, I did have some graft-vs.-host disease, but I just worked through it as positively as I could and kept on that positive path. In time it burned itself out, and I got off all the meds to suppress my immune system.
My energy came back, my health was great and I was eventually given the all-clear. The moment I could be untethered — other than blood work every couple of months — I went traveling the world with a friend. I discovered a passion for scuba diving that I would never have found if I hadn't been gifted my marrow.
Now here I am, 26 wonderful years later, happy, healthy and so filled with gratitude for the wonderful anonymous woman who gifted me life — my blood sister. I'm so thankful to my dear doctors and nurses who journeyed with me. And what a journey it was. I'm fortunate I can say that.
I'm also fortunate to say that I worked at the Hutch for several years when I was well enough to do so and had the pleasure of meeting and personally thanking Dr. E. Donnall Thomas for his groundbreaking, lifesaving work. [Editor’s note: Thomas, a Fred Hutch scientist, won a Nobel Prize for the development of bone marrow transplantation.] I certainly wouldn't be here if it weren't for his research and the Hutch mission. My desire was to be part of the Hutch team for a short while, so I too could support the dedicated doctors and researchers as they continue pioneering discoveries that are supporting and saving lives every day. I will be forever grateful.