Undergoing Stem Cell Transplant in the middle of a Raging Pandemic
March 2020: Partial Remission FROM CANCER
I completed my 12th chemotherapy treatment in the first week of March, 2020 – just as the world was coming to terms with the fact that we were in the middle of a deadly global health crisis. As per my Pet-Scan on March 13th, I was on partial remission. It was time to start with the Stem Cell Transplant journey of fighting and removing these cancer cells and HLH out of my system.
I met with the Stem Cell Transplant (SCT) Team in Calgary. They seemed happy enough with my Pet-Scan report to move forward. The transplant would involve a four to five week hospital stay in isolation. In Calgary, my SCT Team started with my paperwork, blood tests, scans and medical examination. I was undergoing an allogeneic stem cell transplant. My donor was my little brother who was a 100% DNA match. My brother also had to undergo some medical examination and blood tests.
My whole calendar for March was planned by my Bone Marrow Team(SCT) in Calgary. I traveled to Calgary for a battery of blood tests and scans. For the pre-SCT ‘talk’ to discuss process, side effects and risks involved, the Bone Marrow team wanted my family to be there too. All my pre-SCT preparations were done. Due to my compromised immune system and COVID-19 raging outside, I had to take extreme precautions. By the end of March, my SCT was approved.
I had mixed feelings about all this. I was happy that I could finally do this part of the treatment, which was also the most challenging bit. I could almost see the light at the end of the tunnel. However, I would be lying if I said I wasn’t scared. While preparations were going as planned, I suddenly developed cough and other flu-like symptoms during my pre-work up in Calgary. My doctor at the Bone Marrow clinic advised me to go for a COVID screening and other tests as well to see if I have any other infections or viruses. I also had to go for another bone marrow biopsy (my 8th) before the stem cell transplant process.
I tested negative for COVID. The influenza virus was treated with medications for two weeks. This postponed my stem cell process as the risk of undergoing SCT while I had influenza would simply be too high. I was supposed to get admission to Foothills Hospital in Calgary by April 6th but instead I was advised to stay home in isolation for a couple of weeks before my treatment date. I was impatient and stressed out due to the delays caused by COVID and my influenza. When I got tested for influenza again in April, I was thankfully negative. Finally the Bone Marrow Transplant team could start the process for the SCT.
My Mom and Dad were my full-time caregivers as I had to stay in the hospital for one month during my treatment and post-treatment for about three months. We booked a two-bedroom apartment in the Hospital Special Service Building for my family. This facility is specifically assigned to bone marrow transplant patients and family members. During the first week of stem cell transplant process the patients can take a day pass and stay with their family. As days passed by new visitor policy rules kicked in due to increasing number of COVID cases. So there was strictly no visitor policy in the hospital. Day passes for patients were also cancelled. I had to be isolated for 30 to 40 days in the hospital for my stem cell treatment. COVID ruined everything. My family needed to prepare themselves as we all had to stay in Calgary for three months post SCT. I was unfortunate to not have my family and close friends with me during the most trying time of my life My Husband and Brother worked, so they planned to visit my Mom and Dad on their days off, but due to the lockdown, their work places were temporarily shut. It was a good thing thay they could assist my Mom and Dad in Calgary and be my full-time caregiver. Overall I was just so relieved to be getting everything underway again and inching closer to having this all behind me.
April 2020: BETWEEN A ROCK AND A HARD PLACE
I received a call from my Bone Marrow Team in Calgary. Only one caregiver can stay at the Hospital Special Service Building due to COVID constraints. They will not be able to see the patient at all. Everyone was concerned about me – What will happen? How will I manage the treatment? As the doctor already warned us, the treatment will be intense for me and that there can be a 15% chance of dying during this whole SCT process. Still, as young woman my body was better equipped to fight stem cells’ side effects. All this information was too much for me, and I wept. That is when my amazing husband said to me, “I know it’s difficult. You’ve won half the battle, you will knock the other half out too. You are my brave girl.” My words cannot express how much I love him. I had his and everyone’s back during this process. Even through my tears I knew I had to fight this battle and come out of it to see a better me.
The very first part of the SCT process was conditioning therapy. I would be given seven days of conditioning chemotherapy and radiation to damage and possibly wipe off my bone marrow. The stem cell transplant itself replaces the damaged bone marrow with healthy donor stem cells. I was terrified and anxious every day but I had to be tough for my loved ones. I had no idea what lay ahead. I wanted them to know that I am strong and that I can deal with this alone. Honestly, I was already exhausted. It had been a long journey and the thought that I may not make it stressed me out. I was not ready yet to part with my family, my loved ones. Isolated for 30 to 40 days with no one to hold my hand and hug me, I was an emotional wreck inside. The high risk of side effects some of which could go on for years, wasn’t comforting either.
On April 6’th, my family dropped me off at Foothills Medical Centre as they couldn’t come to my room, where I will be staying for 30 days or more depending on my treatment. Emotions were running high at the time. We couldn’t stop ourselves from crying and hugging each other. I had been trying to put on a brave face, but I was utterly terrified. I hugged everyone tightly fearing that I may never see them again. Will this be my last goodbye?
The day I checked in, a kind nurse helped me unpack. I spent a few hours making my room with family pictures, clothes, iPad, my journal and books. I had a fantastic amount of support from the hospital staff. The day was already fully scheduled. I had to go for an X-ray and CVC line insertion. A central venous catheter (CVC) is a thin, flexible tube (catheter) placed into a large vein above the heart. It was a painful procedure but helped me through the treatment. That whole day I kept thinking about my SCT and worrying if I’ll ever get my life back. My chest and shoulder were sore feeling like someone had punched me hard.
“Ready as ever to battle through this week of chemotherapy and radiation followed by the stem cell transplant.”
On April 7’th, I started with the conditioning chemotherapy and radiation therapy that was scheduled for seven days to intensively kill all types of cells in my body whether good or bad. This would make it less likely for me to get cancer again and inactivate the immune system to reduce the chances of stem cell graft rejection. These seven days were arduous for me. I was glad that I made it to the final day of my conditioning therapy. I was broken, but I smiled as much as I could… it was not easy! I had a rough week, but conditioning is done, and I’m still shining! Proud of my little self!
Day 0: My SCT day was finally here – April 14, 2020
I was excited but very anxious. I tried to focus on the positive outcome. Thankful to my brother for gifting me his magic cells and a second shot at having an normal life. It was my re-birthday. I was wished by my nurses a happy re-birthday. The doctors and nurses’ were quite incredible and supportive that day knowing that I was all alone for my big day. It all went very smoothly. It’s like getting a blood transfusion. Infusing the donor stem cells takes several hours. I did my best to focus less on the fear and more on the beautiful life waiting for me on the other side.
“The start of a new chapter of my life, hopefully I will be in remission or Cancer free after this.”
Day +5: The days that followed the SCT weren’t any cakewalk. After three to four days of SCT, I started developing mouth and throat pain – a known side effect of chemo and radiation therapy called Oral Mucositis. Mucositis can occur anywhere along the gastrointestinal tract, but oral mucositis refers to the particular inflammation and ulceration that occurs in the mouth. It usually gets better a few weeks after the treatment, but it can make eating and drinking painful. I had trouble speaking, eating, and even opening my mouth. I was prescribed soft foods, popsicles, yogurt and boost drinks. My doctor advised me to get a food pipe insertion as I could barely eat and my body needed nutrients to keep me going. The conditioning chemotherapy treatment drained me emotionally, physically and mentally. I was significantly depleted after one week. The tears streaking down my face were my only expression of the terrible nightmare that I was living through. I yearned to see my family but couldn’t. I asked my husband to drop by the hospital so I could atleast see him through the window, which I did. Seeing him and my brother standing outside brought me warmth, happiness and hope. They couldn’t see through the tinted windows.
There is no way to sugar coat it – the transplant without a doubt was as excruciating experience that I wouldn’t want anyone to ever have to go through. And yet, nothing could have prepared me for the intensity of the side effects or how unwell I would feel. I was never ready for this persistent sickness, weakness and pain I endured over weeks. I spent most of my time lying in bed watching Netflix, playing online games, face-timing my family and friends. There were days and nights when I would scream in pain. I was not even able to talk to anyone due to my sore mouth and throat. I prayed to God often, seeking comfort in my faith that this too shall pass.
The doctors put me on daily narcotics (Pain Pump) to keep the severe pains at a reduced level. Due to narcotics, I was sleeping a lot. I remember a day when I woke up in the evening and I thought it was morning. I was living with trauma, was mind brimming over with irritation and anxiety. I could not even recognise myself in the mirror anymore with that swollen face, eyes and lips, the dryness and the radiation tan.
Day +10: I started getting some fevers and rigours again.The staff gave me Tylenol to control the fever and took several blood cultures over the next three days to rule out infection. My doctors and nurses assured me that everything is 100% back on track, just a little slow. I may need blood transfusions and platelets as my counts continue to drop. My case continues to be extraordinary for the doctors.
Day +20: I had to call for the nurse to help me get off the bathroom floor. I could barely make it to my bed. This was the fight for my life, and was getting through it second by second. I could not bring myself to tell my family about this incident, not wanting to stress them out further. My oxygen level was low, so I was put on oxygen 24/7 for the next two to three days.
May 2020: BABY STEPS
I began taking baby steps in the right direction. My blood count was rising. We needed to wait a while longer to be sure exactly how the engraftment was going.
It’s taken so much will and courage to get here, and I am so grateful. When you’re faced with the most formidable barrier, and you have only one chance to live, you take a deep breath, look the hardship in the eye, and focus. Focus on being well and focus on being healthy. It took all the strength and motivation to survive this, and I felt it down to every fiber of my being. I am acutely aware of how lucky I am to be given a second chance to live.
In the last 12 months, I have had over 500+ samples of blood drawn, 5 surgeries and 8 biopsy’s, numerous chemotherapies, 3 radiation therapies, 6 PET scans, 5 CT scans, 10 X-rays, 45 blood transfusions, 30 Grastofil injections and endless other procedures that I can’t even recall. Needless to say, this whole experience has been traumatic, devastating, painfully difficult, and exhausting. Cancer has changed me completely. I am a better person now because of it, but I never imagined that this would be me, even in my worst nightmares.
Cancer has given me a new, hitherto unknown resilience and positivity towards life. I left the hospital on May 8’th with my husband by my side. As I looked at his familiar and comforting smile, I knew I had a very long and rocky road to recovery, both mentally and physically, ahead of me. But I was ready for it. I had the biggest reason to continue fighting – my loving family . I have endured the worst and now intend to embark on a new journey with my loved ones. I sometime still cannot believe that I have crossed the finish line, and I have a body of new cells that will hopefully keep me cancer-free for the rest of my life. After 32 days of hospitalization, I was finally home.
22 July 2020: Hundred Days Old!
Today was a HUGE day for me because I have made it to day 100! I am now 100 days old after re-birth. I’m still fragile, and I can’t walk far but I am just so grateful the worst of the symptoms have passed. The first 100 days of post stem cell transplant are crucial because transplant can be rejected and I can get critically ill. Fatigue has been affecting me a lot more than I anticipated. I feel constantly exhausted. I was aware it will take a long time but thankfully it’s mostly recovery from here. I have spent most of my time lying in my bed or sofa in the last three months. Gradually things are improving. It’s hard not to get upset and frustrated when I cannot do the most basic daily tasks. I am waiting for my taste buds to come back to normal but we are getting there slowly. I had to move back to Edmonton (my home town) for further follow-ups and appointments with my post SCT team.
August 2020: FINDING GRATITUDE
Four months after the SCT, what a journey it has been. I’m grateful and thankful to God for having such fantastic support from my family during this time. When I left the hospital, I could barely dress myself or walk across the house. I felt weak. I would vomit every time I ate food or medication. I could not sleep, so I used to take the prescribed sleeping pills. During this time, my blood counts were low as I got the BK virus and EBV virus after my SCT. I did get blood and platelet transfusions after the treatment. It was a rare case. Generally, the count should have improved but it’s me as usual. I still have a long way to go, but I’m already so far from where I used to be.
You don’t always think about how much identity you take from your appearance till it’s taken from you. I have hope that it will only be for a short while. I’m going to come back stronger. The hair will grow back, my strength and energy will come back better than ever! This is just one phase that will lead to a much better one and I am eternally grateful for this opportunity. This is just a phase to get to a much better one and I am forever thankful for this opportunity. Hopefully, this will be the final hurdle.
“Plan for the worst, hope for the best and live for the moment!”
September 2020: No Evidence of Disease
I was feeling so tired of the whole process. My blood counts are not rising as it should after an SCT. My PET Scan report didn’t show any signs of cancer. My doctor is not sure why I have these small lumps on my legs and thighs. She wanted to go for another bone marrow biopsy. Honestly, my body and mind are begging for a break. I have been through a lot already after the transplant. Can I just feel normal for a few days? It seems difficult to achieve. I couldn’t stay “problem-free” for long, I guess. My bone marrow report came negative. As hard as this is, I know I am one of the fortunate ones to have my beautiful family right by my side and my friends checking upon me daily. Not to mention so many of you sending me encouragement when I really needed it.
Mentally the last few weeks have been quite difficult with a lot of ups and down. It’s hard because although I have finished treatment, I still feel like my life is completely on hold and I can’t really put treatment behind me. It’s emotionally draining to keep being scanned and keep waiting for results. To keep going back to hospital every Monday that has so many traumas associated with it. I am not “all clear” I am NOD (no evidence of disease), which is very different and makes life seem rather fragile, it can be snatched away again so easily.
October 2020: Already half a year old!
I turned 6 months old on October 14. I am still neutropenic, which means I have deficient white blood cells to fight infection, hence isolation. I still get Grastofil Injections every week.
It’s been a long journey to get here, at some point it felt like this day would never come. Growing COVID everywhere means I need to continue to self-isolate. I’m just going to use this time to focus on recovery. I have been recovering slowly and overall the prognosis is good, so I am very hopeful. I am definitely not out of the woods yet. I still have a long way to go but I feel proud to have made it this far.
Sometimes I feel like Cancer is all I know, people always say that soon cancer will be a distant memory. We can’t expect ourselves to go back to normal. We cant’ expect ourselves to forget trauma. Its unhealthy and unrealistic to think such a thing is possible. It’s hard to control the mind. That’s what makes mental illness such a serious issue. We cant control where our thoughts leads us to.
My oncologist is still not sure why my counts are low, they just want to wait and watch for my symptoms as this disease doesn’t have much work up and diagnosis has not been so easy. After listening to all this, I can just hope and pray for the best in life. I am a survivor, a warrior and I have learnt that the human spirit is stronger than any adversity. No matter what your battle is, just keep going and keep fighting. I’m finally starting to process a bit more of what I have been through the last year and a half.
My hair and eyebrows are finally making a comeback. I had a list of things I wanted to do once all this is over. However, isolation has put things on hold. I’m somewhat grateful for all of this. I think I would have probably been too eager to rush back to work or travel to another country. I might have done too many things on my wish list too soon. The isolation has forced me to focus on my recovery which, however less I may want to admit, I definitely needed.
Such a strange time to go through! In some ways I was already in isolation throughout my cancer journey. There were days when I wouldn’t leave my bedroom. I couldn’t go to the shops to do groceries or hang out with my close friends. So not being able to do any of that now doesn’t feel that weird to me. I almost feel like I’m still stuck in the cancer bubble. But once the isolation is over, I will be FREE again.
With every passing week I feel better and better. I was worried that I wouldn’t know how to live my life without cancer. I’ve been exercising and sleeping normally. I have joined cancer groups to keep myself busy and also to be with those people who have been affected by this trauma – Young Adult Cancer Center, The Leukemia and Lymphoma society of Canada.
Thank you to every single person who supported me through my transplant and recovery – from my family and friends to the hospital staff and the local cancer community.
My Cancer Battle 