9 Years After Bone Marrow Transplant — My Cancer Survival Story Part 2

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This is a continuation of my previous blog post. Read the first part of my cancer survival story here.

 

60%.

I had a 60% chance of being cured with just chemotherapy alone. In terms of cancer prognosis, 60% is definitely something to write home about. It’s worthy of a fist-pump, a high-five, a “woo-hoo!”.

So I had my fingers crossed that 60% would get me to the happily ever after that I wanted for my story. And for a little while, I almost began to believe that it was happening.

Then my life started to unravel right in front of me again. The time was spring of 2009.  I had just turned 21.

 

Two Missed Calls

Flash back to the beginning of April 2009. It was the end of the Spring Semester of my second year at university. I had returned to my studies at the Sauder School of Business at the University of British Columbia in May of 2008, after almost a year-long hiatus to combat Acute Myeloid Leukemia.

I was preparing for my final exams like all other students on campus. With just one more exam left to go, I was already looking forward to the summer ahead.

By that time, I had already lost all of the weight that I had gained during my treatment. I had settled into a good routine of alternating between working out at the university gym and swimming at the Aquatic Centre almost every single day. I felt like I was finally back to my former self, and in even better shape than I ever was before.

I felt good. Life was good.

 

 

I was beginning to think that I had made it. It had seemed like I had kicked the life-threatening illness to the curb. And the best part was that besides a few scars on my body and the development of a gag reflex to hospital food, and a quirky obsession with looking at my arms—I had gotten away pretty much unscathed.

And then I discovered two missed calls that made me realize that I was not quite out of the woods as I had thought.

I came home on a Friday afternoon and while sifting through the answering machine on our home phone, I found two back to back messages where the caller had apparently hung up without saying anything. Both times the machine recorded an ominous silence and a distinguishable “click” coming from the other side of the line.

Curious, I picked up the phone and went through the call history. It showed that the calls had come from a number that I had grown to know all too well.

It was the Vancouver General Hospital.

Oh no. I thought. This can’t be good.

 

A Sign of Trouble Ahead

The missed calls set off an alarm immediately. I had gone to the hospital for a blood test as part of my follow-up the day before, just as I had done for the past year on a monthly basis since I finished chemo and was pronounced “cancer-free”. No one from the hospital had ever contacted me after such a blood test. Silence was the mutually agreed-upon signal between doctors and patients that nothing was wrong.  So when I saw that there were two calls less than 10 minutes apart on a late Friday afternoon from the hospital, I knew right away that this meant bad news.

I quickly called the hospital back, but the operator responsible for directing my call was unable to trace exactly where the call had come from. All calls made from the hospital showed just one generic number; without any details about the identity of the caller, it was impossible to direct my call. Desperate for an answer, I dialed the number for the in-patient unit of the hospital and got a hold of a doctor who was on duty. I explained to him that I was on the verge of panic over the two missed calls, and asked him if he had any ideas who could have called. And more importantlywhy.

He had no clue.

“Well, is there anything wrong?” I asked with a quiver in my voice, “with my blood test?”

There was a pause on the other end while he presumably pulled up my information. The doctor finally said: “I can’t say for sure, but your white blood cells are at 2.4.”

I was instantly taken aback. The human body normally contains approximately 4.0-11.0 × 109/L of white blood cells in the blood. At 2.4 × 109/L, I was in a state of Leukopenia where the body lacks the ability to ward off infections effectively. I’d not seen my white blood cells dip this low since the last time I had chemo.

“Your Hematologist Dr. Toze probably called you about that,” The doctor offered.

I then pleaded with him to connect me to Dr. Toze immediately.

“It’s the weekend now so unfortunately, you’ll have to wait to speak to her on Monday,” he said apologetically but firmly.

Could this be a sign of the cancer coming back?

 

I thought nervously as I hung up the phone. There was nothing I could do but wait for Monday to come.

 

No Clear Answer

Dr. Toze called me around 10 a.m. the next Monday morning, just 3 hours before my Marketing class’s final exam. Her message wasn’t the kind of news that anyone would want to hear before having to write thoughtfully composed essay responses on market analysis. My white blood cells were decreasing, she told me. It was not a good sign. She was concerned that it could be caused by the Leukemia coming back or a new type of blood-related disorder, but she couldn’t say for sure what it was. She would need to closely monitor my bloodwork and do more tests.

The uncertain nature of the situation left me at a loss as to what I should do next.

Do I still go to my exam that afternoon? Do I continue with the summer job that I had landed the week before the call? Do I even think about what courses I should take the next school year? 

“Continue your life as usual,” Dr.Toze said, “until we have more answers.”

As hard as it was, I did go to that Marketing final exam that afternoon and somehow pulled myself together and focused my thoughts long and hard enough to pass the exam with flying colours. A week later, I started my summer job working as a receptionist at a physiotherapy clinic. I followed Dr. Toze’s advice and continued my life as usual.

Before I was diagnosed with cancer, I couldn’t imagine doing anything besides crying in the dark if I ever experienced a catastrophic event in my life like a cancer diagnosis. But after I became sick, I realized that life can still continue, and even flourish, despite having a serious illness. I can still laugh. I can still grow. I can still dream. 

By the end of April, I had already gone through a few more rounds of blood tests and a bone marrow biopsy, but there was still no clear answer. All the results that came back were inconclusive. It appeared that I was hovering in a stage of pre-Leukemia—there was evidence that showed that my bone marrow was losing steam, but not enough to say the dreaded word “relapse”.

The next two months were absolutely tormenting. There’s something unsettling about the uncertainty that just eats away at you. It felt like I was stuck in a chess game where I’m waiting for the next piece to fall and minutes, hours, even weeks pass and I still don’t know where it’s going to land.

 

Relapse

Finally, in June of 2009, we had a definitive answer. By that time, my white blood cells had fallen to a meager 1.2 x 109/L, and my red blood cells and platelets were also low to the point where pretty soon I was going to need blood transfusions to maintain normal daily functions. It was clear that my bone marrowthe engine of my blood-forming system was grinding to a halt.

My Leukemia had relapsed. I now needed a bone marrow transplant.

A bone marrow transplant is a procedure whereby healthy bone marrow is taken from a donor and put into the body of a recipient with an unhealthy bone marrow. If things go well, the healthy bone marrow would take hold in the recipient’s body and start producing healthy blood cells. This, as I was told at the time, was the best chance I had at beating this disease.

This is where I really started to worry.

I needed a donor that would match my human leukocyte antigens (HLA) tissue type. HLA is a protein—or marker—found on most cells in your body. Think of it as a set of personal identification codes that allows your immune system to recognize the difference between your own body cells and foreign cells. If the HLA’s are too dissimilar between the donor and the recipient, there will be all sorts of problems as the donor and recipient cells combat one another instead of living together harmoniously as one. Therefore, your doctors will look for a donor that closely matches your HLA.

And the search usually starts with siblings. A brother or sister who came from the same set of parents as you has a 25% chance of being a match. But the problem was I didn’t have any siblings.

With that option out the window, I could only hope to find a suitable unrelated donor in the Canadian unrelated donor registry or other registries in the world—likely someone of an East Asian descent.

Next to siblings, a patient’s best chance of finding a match is among donors of the same ethnic background. This is because there is a link between genetic heritage and HLA tissue type. However, precisely because of my East Asian background—which was and still is underrepresented in the Canadian, and world donor registries—a match could often be tough to find. At the time, it was said that only 5% of Chinese-born Canadian patients would find a match.

I had seen stories in the media of patients who were struggling find a match. These were people who looked just like me, who suffered from blood disorders just like mine. I had even witnessed with my own eyes the heartache a fellow female patient of Chinese ancestry and her devoted husband had to go through because they couldn’t find a match for her. She eventually died. These stories occurred on a tragically regular basis that it gave me doubts about my own fate.

Would I be one of those patients who would never find a match? Would I have to wait, and wait, and wait some more in anguish, only to have my hopes dashed in the end?

These scary thoughts filled my head. I soon found out the answer.

 

Finding a Match

Incredibly, there was a match. Not just one match either. There were two!

My Hematologist told me that she had already gone through the process of searching for a suitable donor for me more than a year ago, before I had even finished my chemotherapy treatments. Due to the fact that a match was often challenging to find given my ethnic background, she had the foresight to do the legwork in advance in case I ever needed a transplant. She was pleasantly surprised when two possible donors emerged. And they were both good matches too, scoring 9 out of 10 on the standard criteria they used for HLA matching. Not perfect, but good enough.

Words can’t describe how grateful I felt the moment I found out that there were not just one, but two matches for me in this world. I thanked God, the universe, and whatever higher power that I felt existed out there. To this day, I still believe it was truly a miracle.

The next step was to contact the preferred donor out of the two matches and conduct a thorough examination to make sure the donor was in good physical condition to provide the bone marrow donation. It didn’t take very long before the results came back. The donor was in perfect health and the transplant was good to go.

A date was quickly set for the transplant: August 21st, 2009.

 

“Dying” in Order to Live

There was a lot of work left to do in the two months leading up to the transplant. First of all, I had to receive a round of chemotherapy to put me in temporarily remission. There was also a slew of other procedures and tests to make sure I was physically able to withstand the grueling transplant process.

The transplant itself, I was told, would be no more complicated than a blood transfusion. The real challenge lies within the first 100 days, and even up to a year after the transplant. During this period, the patient’s immunity is extremely low and Graft Versus Host Disease (GVHD)—whereby the donated cells attack the host’s body—is the most rampant. Many patients have complications and even die from serious infections or GVHD.

A week before the scheduled transplant date, I went into the hospital once again to start conditioning treatment in preparation for the transplant. This consisted of 3 days of intense chemotherapy followed by another 3 days of total body irradiation (TBI). The purpose of this combination of chemotherapy and TBI was to eliminate all of my own diseased bone marrow so that the new stem cells from the donor’s marrow can come in and take hold in my body. Think of it as “cleaning house” for the new tenants to move in.

If I could only use one word to describe the conditioning treatment, it would be “brutal”.

I never expected any of this to be a walk in the park; I had expected to suffer. But what I didn’t expect was the sheer intensity of the suffering. Just fifteen minutes before the start of the chemo, I was still laughing and talking. Feeling pumped, I even rode the stationary bike that they had in the Leukemia/BMT in-patient unit at the hospital.

“You got this!” I had muttered to myself as I peddled. Everything changed once the bottle of chemo went into my body. Minutes later, I was laying in my hospital bed groaning with the last bit of energy I had. My limbs felt numb. My breathing was so slow that I was afraid it would stop any second. I couldn’t feel my face. The pumped-up confidence that I had felt earlier all drained away.

Then came the nausea. It hit me like a tsunami. The urge to vomit was unlike anything I’d ever felt before. I puked and puked until I had nothing else to give. I looked positively “green” according to a doctor who was checking on me. At times the vomiting was so violent my entire body convulsed. for days I just curled up in my hospital bed unable to talk, eat, or do anything besides dry heaving every 5 minutes.

After 3 days of chemo, it was time for the TBI. Every morning and afternoon for 3 days in a row, I was wheeled off to a room with a giant whirring machine that slowly swept up and down my body while I laid very still for what seemed like an eternity.

 

 

The machine emitted Cobalt-60 beams that passed through my skin and flesh, and into the deepest recesses of my bones, annihilating every last bit of stem cells I had in my body. Although I couldn’t see it with my own eyes, I knew whatever that was coming out of this machine was shredding me to pieces at the cellular level, killing me bit by bit each time I laid down beneath it.

But there was no fear. No pain. No sadness.

I had accepted that in order to receive a second chance at life, I had to “die” first.

And “die” I did. By the morning of August 21st, 2009, my white blood cells had plummeted and I was receiving blood transfusions for hemoglobin and platelets on a daily basis to keep me going. It was clear that the last remnants of my stem cells were now gone. I was now ready for the transplant.

 

The Transplant

The transplant was originally scheduled to take place on the evening of August 21st. However, on the day of the transplant we received news that due to delays in transportation, the hospital wouldn’t receive the bone marrow until well past midnight in the morning of August 22nd. The transplant was now going to take place at approximately 2 a.m. on August 22nd.

That night, I didn’t go to sleep. Neither did my mom, who had stayed by my side day and night since the conditioning therapy began. We sat together reminiscing about old times to keep our minds off of what was to come.

She repeatedly told me that everything was going to be alright, that we were going to get through this just like how we had gotten through all of our hardships in the past. But there was a catch in her voice. I looked over and caught a glimpse of her face turning red before looking away. I knew she wouldn’t want me to see the tears welling up in her eyes.

She had always been my rock, my shield, my source of comfort. She had been my cheerleader all this time, and now it was my turn to be hers.

“I’m going to be okay mom,” I told her resolutely, “for you, for myself, I’m going to do everything I can to get better.”

“That’s the spirit!” She laughed wholeheartedly. Due to our culture, Chinese parents and their children often have a difficult time saying words like “I love you” to each other. But what I had said to her that night was equivalent to a thousand “I love you”. It was all she needed, and wanted to hear.

We both quietly wiped away the tears in the corners of our eyes and continued talking and waiting for the time to come.

Starting at around 1:30 a.m.,  the hospital room began to buzz with activity. Nurses came in and out to take my vital signs, prepare oxygen in case I needed it, and inject me with fluids to keep me hydrated. Everyone rallied around me to keep me as comfortable as I could be.

As the minutes passed, I became more and more anxious. I could feel my own trepidation seeping into the air.

Is it coming? Is everything alright?

At last, at approximately a quarter after 2 a.m., a nurse came into my hospital room with a blue container in her hand. The container was so ordinary looking that for a split second, I thought it was a beer cooler. Then I saw the warning label on the side of the container, and I realized what was inside. It was my new stem cells.

I was suddenly filled with so much excitement and relief that it brought me to tears.

This is it.  I thought. This is my second chance at life.

Was I going to make it out of this alive for sure? No. Nothing was for certain. I knew there was a chance I could die, if not from the cancer, then from the transplant itself. In fact, many patients would die from complications within the first year of transplant.  But transplant offered a chance to stay in the game and keep on fighting. And that was enough.

I had pictured this moment over and over in my mind for days and weeks leading up to this second. In my imagination, the stem cells would come in a small glass bottle the size of a regular Coke at the most. So when the nurse took out a large plastic bag of thick, reddish fluid, I was a little stunned.

All of these are stem cells? I thought incredulously. They would go inside of me and find their way into my bones?

Before I could wrap my head around the idea, the nurses quickly connected the bag containing the stem cells to my Hickman line. A doctor came in to check on me one last time before the procedure started. Minutes later, the stem cells started to drip into my artery.

 

 

The whole transplant process took less than an hour. Before 3 a.m. it was all over.

A male nurse came over to my bedside afterward and asked me how I was feeling. As I started to speak I suddenly felt a wave of overwhelming nausea. I darted my head towards the bucket I had been keeping next to my bed for moments like this, and I hurled everything I had inside of me into that bucket.

I vomited for what seemed like forever, until the back of my throat was on fire and I felt as if I had puked up a chunk of my liver. The small bucket was filled with fluids in bizarre shades of neon green and yellow. When I finished I wiped my mouth and let out a long sigh of relief.

“Now that felt good didn’t it?” The nurse smiled.

And he was right, it did feel good. I felt like I had purged with all my might everything inside of me that was making me ill. I was now ready to embrace a new, healthy beginning.

 

Waiting for Engraftment

Then we waited for the stem cells to find their new home. This process is called engraftment.

Engraftment happens when the transplanted stem cells find their way to the recipient’s bone marrow and start producing new blood cells.

Don’t ask me how this actually works. Nobody knows. It’s a magical process that nobody fully understands.

Every morning someone would come by my hospital bed to draw my blood for analysis. A couple hours later, the nurse who was attending to me on that day would come in with a coloured marker and write down my blood count on the whiteboard in my room. We were all waiting to spot a steady increase in my blood count numbers. This, as I had learned, would be the first sign of engraftment.

It usually takes 2 to 6 weeks for stem cells to engraft in a host’s body. For many patients, this can be a slow and frustration process. Knowing this, I was prepared to be in the hospital for at least a month waiting for my new stem cells to engraft.

So I wasn’t particularly anxious when for the first few days after the transplant, my blood counts continued to hover at next to nothing.

Then on day 8, I noticed that there was a slight upward swing in my blood counts. The increase was minute, but to me, it still seemed like progress in the right direction.

Excited, I asked the nurse who had just written down these numbers if she thought this was a sign of engraftment. She looked over the numbers carefully and said that it was still too early to tell. Based on what she had seen in the past, patients don’t usually engraft this early after the transplant.

“I’m sure it will happen soon,” she said reassuringly. “You just have to wait a little while longer.”

And that “little while” turned out to be the very next day.

The next morning, the same nurse walked into my room again with a marker in hand. As she came closer to the whiteboard she started to look down at the paper she had in front of her. As she did this she slowed down her footsteps, and eventually stopped altogether. She looked up at me and said she needed to go back and check my numbers again. She wanted to be sure about what she was seeing. My blood counts, which she had on the piece of paper in front of her, had almost doubled since the day before.

“You can’t be engrafting yet!” She said with a puzzled look on her face as she left the room.

5 minutes later, the nurse came back with a glowing smile on her face.

“You’re not going to believe it,” she beamed. “The cells are engrafting!”

 

Picking Up the Pieces

A week after my cells started engrafting, I was released from the hospital. My blood counts were stellar. I had no signs of GVHD. All cards seemed to be stacked in my favour.

And I continued down my path of recovery with relative ease.

When others were battling extreme and acute GVHD in all body parts from the skin to the lungs, I had just mild episodes of liver and skin GVHD that quickly disappeared with the right immunosuppressant medications. Unlike some unlucky patients, I never had to go in and out of the ICU because of a life-threatening infection. I was surprised to find that some people were still on Cyclosporine —an immunosuppressant medication designed to ward off GVHD—more than a year after their transplant when I had weaned off of the drug long before the one-year mark.

Picking up the pieces after the transplant turned out to be easier than I had thought it would be.

In 2011, I decided to go back to school. I finished my business education with a major in Human Resources Management. I landed a full-time job right out of university working for the same company that I had worked for as a summer intern the year before graduation. My life was going so smoothly by then it was as if I had never been sick.

I started hiking. I hiked almost every trail within 3 hours drive from my home in Vancouver in the 3 years since I started. Then in 2015, I joined a dodgeball hobby league and started playing dodgeball at least one evening a week. I resumed my workout and swimming routine and enriched my fitness regimen with the occasional Zumba classes and regular lessons of Tai Chi.  I truly felt stronger and healthier than I had ever felt before.

 

 

Every follow-up appointment with my Hematologist was short and sweet. If there were problems, they were minor. Things like dry eyes and dry mouth, and the rash on my left hand that seemed to come and go. We would spend the bulk of our time together talking about my latest travel plans, my dodgeball games, and whatever else that was going well in my life instead of what wasn’t.

The transplant itself and all the pain and turmoil surrounding it soon became a distant memory. I got to a place where I could reflect on the experience and not feel a sudden pang in my chest. And once in a while, I would even think “wow that happened to me?”

 

9 Years After Transplant

2018 marks the 9th year since my bone marrow transplant. This has been a year filled with milestones for me, from getting married to setting up a new home, and finally, launching my blog.

I wish I could say that my journey has always been smooth sailing from the early days right after the transplant all the way till now, but that hasn’t been the case.

In 2016, I underwent a lung function test as part of my transplant long-term follow up, and the results were troubling. It showed that I had lost a significant percentage of my lung function. After repeated examinations, I was finally diagnosed with a rare and irreversible lung condition called Bronchiolitis Obliterans—GVHD of the lungs that affects a small percentage of bone marrow transplant survivors. As the disease progresses, patients with this condition would experience shortness of breath, a persistent dry cough, and eventually require oxygen therapy or even a lung transplant to stay alive.

When I first received the diagnosis, I felt like the world had collapsed in on me again. When bad news repeatedly hit you just when things are going well, it’s tough to not feel like life is out to get you. And I’ve certainly had days when I felt that way. But now, after more than a year of reflecting on this new diagnosis, I have come to accept it as the next battle that I must take on, and win. And so far, I’m coming on top. My lung function has been stable since 2016 and I continue to be active in my life without any restrictions.

Sometimes I look back on my journey I can’t help but widen my eyes when I realize that it’s been more than a decade since I first started my fight with cancer, and 9 years since the transplant that had saved my life.

9 years ago this day, I was lying in a hospital bed waiting for my life to “restart”. Now, I’m living that life to the fullest I can, even with just half of the lung volume as everyone else around me. I’m excited to embark on the next 9 years, the 9 years after that, and more.

I want to thank my donor Justin, for giving me a second chance at life. If it wasn’t for him, I wouldn’t be here today to share my story.

I don’t know when and how my story will end, but one thing I learned from all these years is that I have the choice to make my story a happy and inspiring one, no matters what has happened, or will happen, in the plot. By accepting where your story takes you with a grateful spirit, your story will always be one that makes you and those around you filled with joy.

So my cancer survival story continues. What’s your story?

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10 thoughts on “9 Years After Bone Marrow Transplant — My Cancer Survival Story Part 2”

  1. I’ve been crying throughout your story,,, you are brave. Thanks to God that through you as old as i am I’ve leant the power of FAITH,, my sister is 65 yrs she has just been diagnosed with MDS
    You have given us Hope,,
    GOD bless you nd the Donors all over the world

    Reply
    • Hello Nontombi, hope you and your sister are doing okay, it must be a difficult time for you both. Please tell her to keep fighting and there’s always hope.

      Sending you both my warmest wishes.

      Sabrina

      Reply
      • Hello Sabrina
        Thank you for sharing your story, I have a 5 year old who was diagnosed in 2019 with leukemia and my life has changed since, I still struggle with disbelief mainly because of everything that he has to go through on front of my very eyes. The vomiting, diarrhea, infections hospital stays have caused trauma. He is also preparing for a bone marrow transplant, it’s extremely hard for me as I still need to work and be there for him.

        Reply
        • Hi Kay, I’m sorry to hear about your son, childhood Leukemia is something no child or parent should go through. You are such a resilient and brave person, and your son too. My mother was the single caretaker for me when I was sick, and she had to work at the same time also. I remember she would come home from work, cook and prep my meals, and then take a half-hour bus ride to the hospital to spend the night with me. The next morning she would get up early from her makeshift bed at the hospital and bus to work. I told myself I would stay strong and be more positive because I saw how hard she was fighting for me, so I decided to fight equally as hard, if not harder, for both of us. I can tell you from experience that a mother’s love is really the best medicine. I wish you both the best of luck.

          Sabrina

          Reply
  2. Dear Sabrina, I’m 2 1/2 years post transplant and am so grateful to you for sharing your journey. You inspire me ! Thank you. Wishing you a full and happy life.

    Reply
    • Hello Mary, that’s awesome! How are you feeling now? It’s always a pleasure hearing from another BMT recipient so I hope we can connect and share experiences. Wish you an abundance of health and happiness as well!

      Reply
  3. Your story is amazing! Your writing is beautiful! I felt everything you felt as I read your story. It truly shows the importance of getting on the bone marrow registry. People do not realize how important something like that it. Blood donation, organ donation, bone marrow — it saves lives and gives people more time to be on this Earth with their loved ones and family. The best gift you can ever ask for is for someone else to be selfless and register for all of those. My family have been a recipient of organ donation (my cousin had a double heart and kidney transplant at 3 weeks old and again at 20 years old) and his just turned 30! My son has leukemia and he has had platelets and blood transfusions. Thank you for sharing your story!

    Reply
    • Thank you Nicole for reading my story! I wouldn’t be here if it wasn’t for the generous donors who gave blood and bone marrow–they’re truly saving lives. I’m so touched by your son’s story I hope he makes a complete recovery very soon!

      Reply

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