AML Update 2020
Background
On December 23, 2019, I celebrated three years of being cancer free. I was 35 years old and embracing each and every day since the bone marrow transplant (BMT) in 2016 to treat the acute myeloid leukemia (AML) diagnosis. I was ready to make 2020 the first year that I was back on track with my life goals since August of 2016. I was passionately working for the Cleveland Clinic as a Team Lead for a group of systems analysts at Partners Physicians Group. Gradually over the past three years since my bone marrow transplant and recovery my strength and mental focus had returned, and I was able to return to things I enjoyed, such as skiing, golfing, traveling, and flying my drone. I even picked up a few new skills like slack lining, scuba diving and paddle boarding.
Despite feeling better and being ready to tackle new life challenges, 2019 was an exceptionally difficult year in my personal life. Brandy and I had become engaged when I was in the hospital in 2016 and were married in 2017. By 2019 Brandy had decided she needed something different in her life to be happy. I did everything I could to help and support Brandy, to be an understanding partner and caretaker, as she had done with me just a few years back. Unfortunately by early 2019, the decision was made for us to separate. I found myself in an odd place. Part of me was devastated that my love was gone but at the same time I would wake up every day thankful to be alive and have the opportunity to feel as good as I did.
At the start of 2020 I felt fully recovered from AML and ready to start the rest of my post cancer life. I lucked out and started dating an amazing woman, Jess. We were really enjoying our time together, getting to know each other, hiking and traveling. Unfortunately, 2020 was not going to be the new start I imagined.
AML Return
Mid February I received some shocking news. My acute myeloid leukemia (AML) had returned after being in remission since my bone marrow transplant three years ago. I was instructed to begin advanced chemotherapy immediately to prevent the disease from advancing any further. The goal was a second bone marrow transplant to stay leukemia free. I checked into Cleveland Clinic (CCF) main campus G111 Leukemia Wing several days after the initial diagnosis and started a 6 day MEC intensive chemo treatment which kept me hospitalized for the next four weeks.
This stay in the hospital was an especially challenging one. I had entered the hospital with a tingle in my throat that was just starting, and testing confirmed it was the rhino virus (common cold). The cold lasted the entire time in the hospital and six weeks in total. The chemo was doing its job of destroying the rapidly reproducing cancer cells and my immune system along with it. This cold really zapped my energy and left me constantly coughing, hacking and blowing my runny nose. At one point I even pulled a muscle in my chest from excessive coughing which left me in pain with every breath.
A week into my stay I woke up in the middle of the night to my Apple watch alerting me that my heart rate was unusually high for being in a resting position (I was sleeping). I had a pulse of 156 and a fever of 104, something was definitely wrong. Testing confirmed I had a MRSA infection in my bloodstream. The likely cause was from my Hickman port, which had been installed in my chest upon my arrival to the hospital in order for the chemo treatments to be pumped directly into my central bloodstream. The Hickman was removed, and I was started on multiple IV antibiotics. I experienced high fevers, fatigue, confusion, and nausea as the infection consumed me. I remained on the antibiotics for an additional 4 weeks even after I began to recover and a new Hickman port was installed.
While I was in the hospital battling leukemia the world was turned upside down due to the COVID-19 outbreak and resulting pandemic. The hospital went from normal operations to being in a total lock down while I was there. It is hard to put into words how nerve wracking each human interaction was with me being in a immune compromised state. The staff on the leukemia floor did an amazing job keeping the vulnerable patients who shared the floor with me safe. This was a heroic effort by every caregiver on the Cleveland Clinic staff.
Right from the beginning, Jess stepped up in a big way. She went to my initial diagnosis appointment and first of several bone marrow biopsies, then without hesitation signed up to be my full time caretaker through this process. This kind of support meant so much to me and was so helpful in keeping me in a positive mental state. She stopped her job as a nanny and dropped classes, due to an abundance of COVID-19 caution so she could safely be my caretaker. Jess spent all of her time at the hospital with me and took care of me mentally and physically by monitoring my condition, extra cleaning my room, getting me special food and cheering me up. The third week I was in the hospital, Cleveland Clinic policy changed to one of not allowing any visitors at all as the world outside ground to a halt and Ohio went into emergency stay at home orders. I was then confined to the hospital room with no family visitation at all. This was a necessary step to protect all the immune suppressed patients on the leukemia floor. This was an extraordinary time to be an immune suppressed patient receiving cancer treatments at a major hospital where COVID-19 patients were also being cared for. My heart goes out to all those affected by the COVID-19 pandemic that shared the hospital with me.
Two weeks into my hospitalization another bone marrow biopsy was done to determine if the chemotherapy was effectively fighting the AML. The results came back showing that the AML was still present in 12% of my bone marrow. The threshold to be eligible for a bone marrow transplant was 4% or less. This led to some terrifying conversations with the leukemia team. I had reached the lifetime limit of the powerful chemotherapy that was being used to fight the leukemia and I was left with few additional treatment options. The team ordered a third additional bone marrow biopsy the following week. When the results came in, my family, friends, Jess and I were elated and relieved to learn that only 3% of my bone marrow still contained AML. The major hurdle for a bone marrow transplant had been overcome. After another week in the hospital, my body had recovered enough that I was released and was able to go home while the preparations for the bone marrow transplant were being made.
Bone Marrow Transplant
Thankfully both my sisters were eligible to be full match donors for the bone marrow transplant and Andrea was chosen as the donor. This full match led to completely different procedures and chemotherapies than my first transplant with my Mom donating. Andrea had injections for five days to stimulate her stem cells to leave her bones and enter her bloodstream. She then underwent a dialysis like procedure to extract the bone marrow stem cells from her blood for the transplant. We needed at least 4.5 million cells to move forward, Andrea provided 6.75 million super stem cells!
The time at home between procedures allowed me to rest, relax and recover from my hospital stay and complications. Jess and I hunkered down at my house in order to avoid any exposure to COVID-19. Jess’s family and my family made sure we had all the supplies we needed so we did not have to leave the house. After three weeks I was finally feeling better, my cold was gone and I was ready to return to the hospital to begin preparations for the bone marrow transplant. I had a test for COVID-19 (negative) and checked back into Cleveland Clinic on a Friday in April. I began pre transplant chemotherapy that afternoon.
Due to COVID-19, Cleveland Clinic remained closed to visitors when I was re-admitted. That meant that Jess and my family could not be there to give me support and the outside food I needed and craved. This may sound trivial but having the correct food available was a big part of managing the nausea, weight loss and side effects of the chemo. My parents had an excellent plan in which they got me a mini microwave, electric water kettle and a mini fridge along with enough happy food to last for my stay. It was quite the scene for me to bring that all in by myself but made all the difference in the world. Four days of chemo and one day of rest later, I was ready for the bone marrow transplant. I was holding up well through the initial chemo.
The bone marrow transplant took place on April 22, 2020. In preparation I meditated, listened to my favorite relaxing music, and set up a facetime group chat with Jess and my family so we could all be together for the infusion of stem cells into my blood. Everything went off without a hitch. Two days after the transplant procedure I had another round of chemotherapy to suppress my body’s reaction to the new cells. This chemotherapy combined with other medications and my body’s reactions resulted in the roughest couple of days of my entire time in the hospital. After about a week the new stem cells in my body started to take hold and my body began to generate a new blood supply. Finally the worst of my symptoms began to improve. In just a few more days I was preparing for the transition out of hospital support. After nearly four weeks in the hospital, my body was functioning well enough on its own to leave Cleveland Clinic on a Tuesday in May. It was a joyful day when Jess came to bring me home!
Recovery
As exciting as it was to be out of the hospital, it was also a very scary time. Strange side effects happen, and your doctor is not right there like at the hospital. COVID-19 was still a very real threat, it was impacting the entire country, Ohio was on lock down. I needed to make sure I took every precaution possible to stay safe. My transplant team recommends recovering for at least one hundred days, and I am currently on a medical leave of absence. The transplant has been successful thus far, and I am recovering well from home at this time. I have multiple appointments each week up at the Cleveland Clinic Taussig Cancer Center and they are monitoring my progress closely. I am eager to do as much as I can, but find that I tire easily and must rest often. I am gaining strength every day and continuing to heal.
Grateful
Thank you to my immediate family and other relatives who would do anything to help and support my cancer fight and recovery. The cards and care packages I received from family and friends while I was in the hospital were always such a nice surprise during my long hospital stays. Jess and my parents also made numerous trips to Cleveland Clinic with carryout food which was highly appreciated and made all the difference to my physical and mental well being. My parents stepped up to foster my peculiar but awesome dog Mac. Thank you to my sisters Allison and Andrea who both volunteered to donate stem cells without hesitation and a huge thank you to Andrea for staying safe at home so she would be healthy to donate. Jess has been my ever-diligent guardian angel, and thank you to Jess’ mom Susan for all the supplies you sent to prepare for my isolation at home. The quick timeline of my diagnosis and treatment along with exhaustion made it difficult to communicate with my entire support group of friends and family. Thank you to my all my friends for always being there ready with a listening ear when I needed it.
Thank you to the Cleveland Clinic clinical caregivers and nurses. This is an extremely difficult time to be working in healthcare. Working with complex patients is already challenging but every staff member went the extra mile to care for and protect the vulnerable population in their charge. I am especially grateful for the bone marrow transplant team at The Cleveland Clinic, Dr. Hamilton and my triage nurse Jamie expertly navigated me through these rough waters. A big thank you goes to my work family at CCF AG Partners Physician Group and especially my boss Justin. I could not have made it thus far without their unwavering support.
While I rest and heal during this critical first one hundred days I am so hopeful of a full recovery and to once again be cancer free. I am making the best of my time while I rest in quarantine. I just watched all the Harry Potter movies in order for the first time and have incorporated spells into my daily endeavors. I even embody Dobby regularly #KeepingQuarentineExciting. Hopefully this time represents the pause before the beginning of the rest of my life. I have been truly blessed during this difficult journey. I am looking forward to a healthy, happy and exciting future.
