I recognize I wasn’t being the best patient in that scenario. I was certainly difficult to work with during that admission. However, I believe patients should have a large role in their care as well. While of course patients can’t make all of the decisions, it is important to make patients a part of the decision-89
making process. I condone the flexibility of the team that I was under at that time. Although they may not have agreed with my decisions, they respected them.
I constantly had medications, nutrition supplements, and blood transfusions running into my body to keep myself kicking. I was worn out. I said to the nurses taking care of me,
“I promise I smile when I’m not in the hospital. I’m a real person. I have hobbies I like to do. There are people I like to see.”
The side of me that everyone saw in there was not a side that anyone close to me has ever seen. The nurses started to notice I was down in the dumps too. Two nurses who that took care of me during my stay were responsible for turning my attitude around. Their names were Sean and Joanne.
I learned that the people who are there for you during a rough time, you will remember them forever. They both went out of their way on purpose to make me feel better about myself, to make me smile, to make me feel like everything would be okay. I grew frustrated that my blood counts weren’t recovering. To be discharged from the hospital, my neutrophil count had to reach a certain number. If I remember correctly, it had to be about 2500 for at least two days until discharge could be considered.
For the majority of my admission, my neutrophil count was at zero. Each day, I waited for my neutrophil count to shoot up. Labs were drawn at approximately five in the morning. After a few hours, I was eager to find out what my lab values looked like for the day. But nothing was improving. My counts remained stagnant for over a week. I was constantly reminded that it would take time for my bone marrow to recover from the treatment regimen and that everyone recovers at a different pace. I tried to compare myself to other patients and how quickly or slowly they recovered.
I received daily injections of a medication called filgrastim which was supposed to stimulate my bone marrow to create white blood cells. Whenever Sean gave me the injection, he said,
“Alright man. This is the one right here. This is the one to get that neutrophil count going.”
I believed him each time. But each morning, I would be disappointed by the results. Once my neutrophils finally started to bump up from zero, it was the slowest incline I could have imagined. It 90
started at 5, moved up to 15, then back down to 10, before bumping up to 20. It teeter-tottered its way ever so slowly in the upward direction. It was discouraging for the number to not just shoot to the moon so I could get out of there.
I failed to recognize the importance of the progression. Sean taught me that no matter how small progress may seem, it is worth getting excited about. He would pop into my room each day that he took care of me as soon as the neutrophil count came in. I could tell how excited he was to tell me the number. He would ask me to take a guess. Some days, my guesses were underwhelming and I aimed too high. Other days, my guesses exceeded my expectations.
Sean found joy in finding ways to make me smile. We both got hype each time the neutrophil count bumped up. One could argue that he was even more excited than I was! He is a man that I will remember until the day I die because he was so influential for me during my time of need. I have to give credit to Sean for helping me knock down that second wall. He helped me take a step back to realize that I was progressing. It wasn’t going to be a miraculous increase overnight, but a slow and steady progression. With that, my attitude brightened just enough to keep me pushing toward discharge day.
Joanne taught me that there is a takeaway from each day. Something we could reflect on to see what we improved on or what we could do differently the next day. I kept looking at the end goal of being discharged from the hospital. I still was on mostly IV medications, IV nutrition, and I could barely eat. I had a long way to go. Joanne would pop into my room, even if she wasn’t my nurse for the night, just to joke with me and make me laugh. If I was discouraged with how the day went, she would say to me, “But look at how much better you did than yesterday.”
She was my hype woman. If she saw me walking in the hal way, she would call me “superstar.”
I smiled just in anticipation of what she would say to me when she saw me. Several times she sat right next to my bedside late in the evenings to try and cheer me up. On days she was off, she made sure the other nurses on the floor were checking in on me and saying hello in the hallways. She always told 91
me that what I was going through was difficult, but I was able to handle it. It was alright if I didn’t always feel strong and capable of handling the situation. No matter what, I was going to make it through. The storm will eventually end. Joanne picked me back up every day I fell trying to break down the third wall of the transplant stay.
Joanne also taught me it is okay to ask for help. I made myself feel ashamed for not being strong enough to handle the struggles on my own. But she continuously told me that she would be there for me if I needed her. Al I had to do was ask. Asking for help isn’t giving up, it is refusing to give up. She came in to reassure me that the struggle I was currently in wouldn’t last forever. Because of her, I learned from the takeaways each day and used them to my benefit the following day. I would ask myself, what went wel today? What didn’t go so well? Acknowledge your progress and take pride in it.
But don’t forget there is always room for improvement.
What wasn’t going so well was how I was eating. I lied about how much food I was actually consuming. I knew that being able to eat would help me get out of the hospital. But I just couldn’t eat.
The sight of food made me want to throw up. The team tried weaning me off of IV medications to get me used to taking pills. But when a pill cup was placed on my end table, it made me dry heave. I hated looking at those giant pills. I hated trying to swallow them even more. A dietician stopped by my room every few days to track my progress.
I had a piece of paper hanging in the front of my room where I was supposed to write down what I ate each day. Each morning, I ordered a blueberry muffin. I took the muffin out of the wrapper, threw it in the trash, and covered it up with tissues. Then, I wrote on my meals tracker that I had a blueberry muffin for breakfast. I knew it was the wrong thing to do but it was an act of desperation. I couldn’t finish the muffin even if my life depended on it. It is unbelievable how tiny my appetite was during that hospital admission. A day’s worth of eating would barely equate to one meal that I would have today. My stomach had to get readjusted to be able to withstand different tastes, textures, and consistencies.
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I came up with this absurd idea to get my pills down. It was disgusting, but hey, it worked for a little while. A snack that helped me get by was pretzels and peanut butter. I had those little pretzel rod snack packs stashed over on the windowsill in my room. I asked the nurses to bring in some of the Smucker’s peanut butter cups that they kept in the pantry room. I had three or four cups stacked on my table at all times.
Before I tried taking a pill, I shoved a glob of peanut butter into my mouth along my cheeks and in front of my two front teeth. The peanut butter served as a distractor to take my mind away from the pill that was about to be placed on my tongue. Instead of triggering my gag reflex, my mind gravitated towards the need for a drink because the thick peanut butter dried out my mouth. I quickly took a swig of water or ginger ale, put the pil in my mouth, swallowed it, and hoped I didn’t puke it back up. If the pil didn’t go down on the first try, I coughed it up. Those three posaconazole stil proved to be my worst enemy. I coughed up those tablets countless times. I know this is a big “no-no”, but on days I was really feeling lousy, I tossed those three pills in the trash with no regret.
The doctor who was on service for most of my hospital admission was being switched over to the care of another doctor. He wasn’t just any doctor; he was the head honcho of the stem cell transplant unit. The filgrastim injections were finally paying off and my neutrophil count was making leaps. You know that made me, Joanne, Sean, and the rest of the team hype.
With my neutrophils reaching the levels they needed to be at, the word “discharge” final y was getting thrown into conversation. By now, I had already spent over a month in the hospital which was my most extensive stay yet. The truth is, I lied about how I was doing most of the time there. Throwing away food, not showering, and vomiting all behind the back of my care team. There were so many ups and downs. For a moment, I thought I was getting better but then felt drained again the following day.
After a solid day of eating (which wasn’t saying much at the time) and getting some laps around the unit, I threw up after only walking a handful of laps. I frantically threw paper towels and tissues over the vomit because I didn’t want anyone to see it. I knew discharge was close and I didn’t want anything to 93
mess that up for me. On the first day the head honcho was on service, I tried to be a showoff and walk a few laps before he came in to see how I was doing. My motto was, “I won’t give them any reason to keep me in here.”
I sat in my usual spot by the window in the hallway for a break when the physician assistant asked me to head back to my room to meet with the team. The doctor was a cool dude. He knew I had been begging anyone I could to get discharged. But he had some reservations about that. He told me that some patients get sent home too prematurely and end up being readmitted due to malnutrition.
So, they made a deal with me. They would take me off of the IV nutrition and see how I did with taking my pills and eating my food for two days. Then, finally, discharge could be considered. Bingo.
I am not proud of it, but I wasn’t truthful about my food consumption in the hospital. I took ant-sized nibbles from peanut butter and jelly sandwiches only to throw them in the trash minutes later.
But, I chalked it up on my meal sheet as a full sandwich. For my pills, I knew how important they were for me to take so I forced them down. There was never a day that they all went down easy. I saw the light at the end of the tunnel which served as my motivation to take bites of food when I could and take all of my medicine. I knew I still needed hospital care but the quality of life there was just too poor to sustain for an extended time. I fell into the same mindset as my previous long hospital stays. I thought being sent home would magically cure everything again.
Since I was off of my IV nutrition and it was almost time for discharge, I was able to get the catheter from my chest removed. “Oh, it isn’t painful! It is just like getting your PICC line removed. They just pull it right out,” I was told by everyone. Then again, I don’t think any of those people ever had a catheter placed into their chest before. I remembered how painful it was having it put in and I would imagine it was going to be painful on the way out too. I was taken down to the interventional radiology department in the hospital. I was placed in a room with a curtain dividing it in half. Another patient was laying in a bed on the other side.
“Are you ready to get that Hickman taken out today,” asked the nurse.
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“I cannot wait,” I responded without hesitation.
She cut out the sutures holding the catheter in place and intensely cleaned the area.
“How long have you had this in place,” she asked.
“About a month,” I responded.
“Alright, we may not even have to numb the area. Sometimes when it hasn’t been in too long, we could pul it right out.”
The doctor came in to remove the catheter. He insisted on using a few shots of lidocaine to numb the area. He wanted the removal to be as comfortable as possible for me. The first shot of lidocaine went deep into my chest. Oof. Alright. That one kind of hurt. For the second shot, he lifted the piece hanging out from my chest and poked right underneath. Damn, that one hurt too! Now it was time to get the tube pulled out of me.
The doctor started pul ing on the catheter and it hurt like hel . I couldn’t look down at my chest to watch it all unfold. Deep breaths weren’t doing me any justice. I was wincing in pain. “Last little bit is the worst part,” he said to me. I squeezed my eyes and gripped the sides of the bed as tight as I could.
“There we go!” Just like that, a long piece of tubing was being pul ed from my chest right in front of my eyes. It felt like he had just ripped my heart right out of my chest.
“Are you alright?”
“Yeah. Yeah, I’m good.”
I looked down at my legs and they were quivering. The whole transit back up to my room I kept thinking about how shocked I was about the pain I just experienced. But I was now one step closer to getting out of there.
The next morning, the team came in for their daily round with me. “Congratulations! I’m going to let you go home today. I know you’re going to do great,” said the doctor.
Let’s go! Finally! It was time to get out of there!
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What I had been through during those five weeks was nothing short of torture. The fourth and final wall of the transplant stay was knocked down with the doctor’s words. It was time to begin the long road to recovery.
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I sat by the window in my apartment with the warm spring air breezing on me. I snacked on a few pieces of watermelon before I had to start knocking down some of the pills I had to take. I had twenty-one pills to take each day. Twenty-one pills! Even taking a short nap put me behind schedule for my medication. On top of those oral medications, I had to do daily magnesium infusions. The tacrolimus medication I was on impaired my kidneys’ ability to reabsorb magnesium. So, every day I had to get hooked up to a pump for four hours to replenish my body’s magnesium stores. Even with receiving four grams of magnesium each day, I was barely in the normal range.
Madison kept a written log of how I was doing each day during my beginning weeks at home.
If you look in the notes, you’l see a lot of me saying, “I feel like shit.” I stil wasn’t getting much food down. The medication kept making me gag. Looking at my pill box made me want to run for the toilet.
I began to experience some more side effects of the conditioning regimen. My hands and feet burned like hell. It must have been damage to my skin from the radiation. While at rest, it wasn’t bothersome.
But washing my hands, wearing socks and shoes, walking, and other simple parts of life hurt me. Those weren’t the only parts of my body that were burning either. Each time I urinated, that burned like hell too. You would have thought I was peeing out fire. Each time, I tensed up and held onto something to try and resist the pain.
Laying in bed at night, my head felt like it was spinning. Just like one of those nights where you realized you had too much to drink, I woke up each morning feeling the same way. I let myself sleep as late as I could. It’s not like I had anything else to do with myself except for taking medications. Only about a week in from being out of the hospital, I started to crack again. I grew more frustrated with 97
myself each day. I choked on one of my bigger pills and I was dry-heaving. I cried because I couldn’t handle it. Any of it. There was too much responsibility for me trying to heal. Taking medication, trying to eat, trying to sleep, trying to use the bathroom, none of it was easy for me. I cried hysterically which led me to my head hanging in my toilet puking out the little food I had in my system for the day. As soon as I finished puking, my face felt swollen. When I looked in the mirror, I saw a puffy face looking right back at me.
Here we go. One week out of the hospital and I was already spiraling downward. This was on me for lying my way to a discharge. I knew it was going to come back and bite me in the butt. Madison and I agreed we had to call someone and I had to be checked out. We made a drive back over to the hospital so I could be seen in the emergency room. As I was waiting in the triage room, I rocked back and forth because my feet were hurting me so badly. I got ice packs from the nurse and placed them underneath my feet hoping to ease the pain.
Madison and I sat in the neutropenic precaution room to keep me away from infection risk while we waited for a bed to become available. We brought my pill bottles with us so I could stay on schedule with my medication. For 3 hours we waited in that room. Nonetheless, we didn’t get to see a doctor. I was upset that we wasted so much time waiting for help, but nobody came out for us. The swelling did start to go down, so we made the team decision to just go home. We made the walk over to the parking garage in the rain so we could go home and get some rest. We were going to have to wake up tomorrow and try for a fresh start.
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I remember laughing at my mom when she told me she wanted to take me to my doctor’s appointments after my transplant. I thought I would be easily able to drive myself over like I always did.
When it came to it, I wasn’t comfortable doing anything on my own. I needed someone to drive me over and I needed someone to be with me as I walked.
I arrived at the cancer center for my first appointment to see the nurse practitioner. She is an expert in bone marrow transplantation and would be caring for me for the foreseeable future.
My mom and I sat down in the room with her. She was a very energetic and lively person. She asked a lot of questions to gauge how I was feeling. I told so many lies. I made it out to seem as if I was doing much better than I really was.
“I don’t feel too bad honestly.” Lie.
“I’ve been moving around okay.” Lie.
I didn’t want to accept how bad I was doing, in my eyes at least. I asked, “Is there anything I can do for some physical activity? Could I ride a bike? How about playing golf?” Asking to ride a bike had both my mom and her laughing at me. “Maybe with your helmet on,'' she jokingly replied. My face started to turn red. “I don’t want you playing golf either. Not with that PICC line in.” My mom continued to laugh that I even asked about doing physical activity. My face continued to turn red hot and kept my eyes focused on my feet.
My mom asked the nurse practitioner, “Could he drive a car?”
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“Yes, he can do that.”
Both began laughing once again. This was the first time at a doctor’s appointment that I wanted to get up and leave. It was more so a sit-down with two moms laughing at one of their kids because he wanted to do too much. I wasn’t being encouraged to get back to my normal form. I was being encouraged to keep a sedentary lifestyle and wait for time to pass to heal me.
The discussion continued. The good news was my donor cells had almost fully taken over my bone marrow at that point in time. Everything was going according to plan in that aspect. The bad news was the PICC line was going to stay in my arm for at least another six months. Magnesium infusions would continue for at least six months. Immunosuppression would continue for three to six months. In summary, I was in for a rough stretch.
A day that was heavily emphasized was day 100. That day marked several milestones. I would plan to start coming off of my immunosuppression, I would be able to eat takeout food again, and another bone marrow biopsy would be scheduled to examine how my bone marrow was functioning. It created a false narrative that after that day, everything would return to normal.
On the way out to the car, my mom told me she was so happy she could cry and asked me for a hug. After I hugged her, I asked, “What is it that you are so happy about?” I questioned in my head, that I have to keep my PICC line in for the next six months? That I have to be on all these medications?
That I can’t do any physical activity aside from walking?
I failed to realize in that moment that I had plenty to be grateful for. The transplant was going how it was supposed to. I didn’t recognize that. I focused on what I wanted. Not what I needed. What I needed were those stem cells to start going to work in my body and they were. But I continued to focus on the medications I didn’t want to take. The lifestyle I didn’t want to live. Everything that I wanted to do, I couldn’t. My time would come, I just had to be patient. The conversation with my nurse practitioner that day knocked down the first wall of the recovery process outside of the hospital. It set realistic expectations for how my recovery was supposed to go. Although I was unhappy with how the next few 100
months were scheduled out to be, I had no control of it. I just had to find a way to put my head down and do what I was told.
My initial interaction with my nurse practitioner does not at all represent what my relationship turned out to be with her. She is an incredible and caring individual who is fantastic at her job. Her livelihood was not something I was able to appreciate at first. I was unable to recognize that she was not actually laughing at me at that first appointment. Both she and my mom knew I was being too ambitious right out of the gate from transplant. She used her energy to connect with my Mom and I.
She did her best to shed light on a dark situation. She cheered me every step of the way and guided me to a successful recovery. I will always be grateful that I was under her care after my transplant.
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While at home, I woke up late each morning. I hardly ate my meals, and I didn’t get up off the couch for much. Just like I did in the hospital, I laid on the couch under a blanket while staring at the wal ahead of me. I wouldn’t say I was depressed at the time, but I didn’t look forward to a new day when I hopped into bed at night. I always hoped I would wake up one morning and all of my issues would magically resolve. I didn’t understand that I had to take control of the situation. There were things I could control but I didn’t want to step up to the chal enge. I didn’t make changes to myself. And, because of that, no changes were made to my problems.
I had a memorable bad day that summer. It was a Sunday and I had to pick-up medicine from the pharmacy at the hospital before they closed at two in the afternoon. Madison and I hopped in the car, and I pulled out of our parking spot. As soon as I put the car in drive and started moving, something felt off. I hopped out of the car to see if something was wrong. I looked at the back right tire and saw a screw lodged into the rubber with the wheel completely deflated. You have got to be kidding me. Life was poking fun at me.
I pulled the car over and started to work on getting the tire off and replacing it with the spare tire. The heat was aggravating my skin sensitivity and bending down on the hot concrete didn’t make it feel any better. As we tried lowering the spare tire down, the pul ey was rusted and wasn’t loosening the tire for us to take off. It was close to when the pharmacy was closing, and I stil hadn’t eaten anything. Madison offered to hangout by the car while I went to make a quick snack. My gourmet first 102
meal of the day was one egg served with a piece of toast with no butter. With the anger I was feeling from my flat tire, I ate my meal too quickly. Not long after, that small meal came right back up. So much for having my first meal of the day.
We finally were able to get the tire fixed but not until after the pharmacy closed. Sometimes, life will really test your patience. And that day, I lost. As I sat on the hot Philadelphia sidewalk waiting for help to get that spare tire off of my car, I bowed down to that troubling second wall.
One of the most influential lessons I have ever heard was one said by Jay Shetty. To paraphrase what he said, there are three things you can control when working toward a goal of yours.
And then, there is one thing you can’t control. What you can control is your preparation, your practice, and your patience. What is beyond your control is the result. However, within your preparation, practice, and patience IS the result.
In those beginning steps of my road to recovery, I was not cultivating any of those three aspects into my daily efforts. As my dispiriting conversation with my nurse practitioner and flat tire demonstrated, I had difficulty staying patient. I did not prepare myself for a new day before going to bed either. I hopped into bed and rolled out whenever I felt like it the next morning. And for practice, I had no habits in place to better my chances at a smooth recovery. I did a whole lot of nothing and expected something in return.
My weight continued to plummet. When I went to see the nurse practitioner, she was worried about my weight too. She made comments about how skinny I looked each time. I dropped down to my lowest weight throughout the whole process which was a feather-light one hundred and thirty-eight pounds. With no progression in my dietary intake, it was time to result to dronabinol once again.
Dronabinol played a monumental role in my recovery by allowing me to eat substantially more.
My calorie intake was on the rise. I still struggled with more complex dishes, but I was able to get a handle on basic meals. I started to mix in my own protein shakes to get in additional calories and 103
protein. I had a ten day stretch where I made a shake to drink each day. By the end, I was already getting sick of them.
Although dronabinol helped me eat, it didn’t help me get off the couch. The additional THC side effects were kicking-in. My mind constantly raced about the most random memories which made me laugh every time. I found myself perusing through the internet and watching YouTube videos just like I used to. A funny moment I want to share with you is when I was scrolling through YouTube high as all hell one day from the dronabinol. Once I explain the story, you will understand the pointless videos I got myself into watching.
I stumbled upon a video called, “Golden Retriever Came Across a Deer then Started a Game of Chase” (I bet that is even worse of a title than you were expecting). I scrolled through the comments, and someone posted, “Just read that title as a game of chess and my high ass was literally waiting for them to play chess.” I appreciated that comment because now I knew I wasn’t the only dude who was high and found that video. By the way, you could check out the video yourself to see if the two end up playing chess together.
Dronabinol was helping my appetite which resulted in more energy for me. I felt well enough to try to work on schoolwork to keep myself occupied. The professors at school were allowing me to make up schoolwork from the spring semester during the summer months if I chose to do so. I was very grateful for their flexibility with me. While reading over school notes, I unconsciously took sips of water and snacked on granola bars. It also gave me a rhythm to my days. Approaching each day with a set plan is what I needed most to help me recover. My preparation began to come into place.
Making up pharmacy courses over the summer wasn’t easy. I already had a tough schedule, and adding in courses like biostatistics, pharmacokinetics, and pathophysiology & therapeutics of the cardiopulmonary system added to the toughness. These courses were already difficult enough by themselves. Some courses didn’t have any recorded lectures for me to follow along with. The 104
professors were willing to meet with me whenever I felt the need to, but other than that, I was on my own for trying to teach the material to myself.
I remembered that this wasn’t the first time I was on my own. And thankfully, this time, I wasn’t both alone and fearing for my life. Catching up to the school curriculum was difficult but I remembered it wasn’t a life-threatening circumstance. To me, it was just a normal, everyday challenge. It was nothing in comparison to what I had been through before, but I was going to use the same approach as I did in the hospital.
I worked diligently to be as efficient as I could to knock out the coursework. In pharmacokinetics, I had no lectures to listen to. Just as I had stared at the wall in front of me in the hospital for hours, I stared at those PowerPoint slides endlessly trying to make sense of them. I practiced so many calculations, quizzed myself on the material, and talked through scenarios out loud. I was gracious that the professors met with me over Zoom for any questions I had.
Over the rest of the summer, I continued to review lectures, complete assignments, and take online quizzes and exams. Handling both schoolwork and my health was heavy to carry, but I continued to walk with it. My health was always my number one priority, but I would argue that being able to take those classes improved my health in itself. Working towards something each day made me feel so alive. I was slowly beginning to realize this, but one day I had to work each day in order to recover from the transplant as well.
An important lesson that I learned is to do the hard task of your day first thing in the morning.
With the daily magnesium infusions, I created self-induced anxiety by trying to get my infusion done during the middle of the day. I hated carrying that bag around during my busiest hours. The tubing hung low from my arm which caused me to bump into it with my feet while walking. The tug on my arm wasn’t a pleasant feeling either.
One day, Madison asked if I could run across the street to get something for us at the corner store. It was just a few steps from my door so I figured nobody would even notice the tubing sticking 105
out from my arm. As soon as I walked into the store, my pump device started to beep indicating there was air in the line that needed to be cleared. Instantly, I had three to four sets of eyes looking at me.
Those poor people probably thought I was going to blow the place up.
I panicked. I quickly stepped out of the store to silence the pump before going back in. After that day, I came to the conclusion that I put the infusions off each day even though I knew I had to do them. Waiting until later in the day didn’t solve anything. It actually made my days worse. Which is why it was important for me to get it done as soon as I could each morning. So, that’s what I did.
By finishing the hard step of the day right away, we set ourselves up for success. I always like to think that the outlook of our day is determined by how we spend our first hour. If we wake up only to scroll through our phone in bed, we set ourselves up for a lazy and slow start to the day. If we start off by completing something we aren’t looking forward to, everything else in the day feels easier. We feel motivated and energized to progress through the day. Otherwise, we push off that one thing that we real y don’t feel like doing as late as we can. Or, we don’t do it at all.
Around the fourth of July is when I felt a change in momentum. I was eating more than before, I didn’t have to take as many pil s, and the pain in my feet were beginning to subside. School work was keeping me busy, and I wasn’t such a couch bum anymore. I was up and moving around the apartment to grab my own snacks and drinks. It was the first time I felt like “someone” again.
When I visited the doctor, they assessed for graft versus host disease. During the first one hundred days is when patients are most likely to experience this. The “graft” meaning the newly introduced immune cells in my body, and myself being the “host”. With this, the immune cells recognize a person’s organs as foreign causing an immune reaction. The most common places this could occur is with a person’s skin, liver, stomach, or intestines. After getting out of the shower one day, I noticed small red bumps on my forearms and hands. I knew what it was right away… it had to be graft versus host disease.
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I sent pictures to the doctor’s office, and they confirmed that it was most likely graft versus host disease. I was prescribed a steroid cream to put on the affected areas. The cream worked really well as the bumps faded away shortly after. But after a week or two, my stomach started bothering me. My appetite that was once improving, diminished once again. Anything and everything I ate went right through me. To give some context, I once had to use the bathroom almost ten times before noon. The providers concluded that my graft versus host disease was now affecting my gastrointestinal tract. To treat it, I started on an oral steroid called budesonide. Budesonide was taken three times daily which wasn’t enjoyable, but it helped my stomach tremendously.
For those who have never been on an oral steroid before, they certainly make you feel more awake and energized. The mornings of me rolling out of bed late in the morning suddenly turned to walks to the park at six or seven in the morning. The steroid allowed me to regain the energy I lost from my treatment. I had an extra “pep in my step”, as the kids say. The small dip I had in my road to recovery was rejuvenated. My appetite improved so much that I hardly had to rely on dronabinol anymore. But, with the combination of budesonide and tacrolimus came its own issues.
Madison and I went for a bike ride up to center city for a fun and relaxing day with one another.
With my small appetite, my stomach started growling so we grabbed a breakfast sandwich from a nearby cafe. The sandwich was a big test for me because there were a lot of ingredients on it. Bacon, egg, cheese, tomato, and avocado. This was a big jump from what I was accustomed to. But damn did the sandwich hit the spot.
Later that day, I remember feeling nauseated with tightness in the back of my neck. The nausea intensified and my head started throbbing. As usual, I found myself with my head above my toilet puking violently. Madison and I didn’t know what to think of the headache. I asked myself, “Was it the sandwich that caused this?” I sat in my recliner with my head pounding so much that I couldn’t keep my eyes open any longer. Any electronic screen bothered me. Lights and sounds made me want to go right back into the bathroom to vomit more. The symptoms I had experienced aligned closely to those of a 107
migraine attack. The only thing that eased my pain was sitting with all the lights off in pure silence.
Then, I closed my eyes and hoped it all would fade away.
As I alluded to before, day 100 was a big landmark for the post-transplant recovery period. It meant another bone marrow biopsy, potentially the start of a taper off immunosuppression, and cutting down on my medication list. I had day 100 circled in the back of my mind the whole summer. For me, it signified the start of me being myself again. The main issue I was focused on was my appetite. Many times, people told me that by day 100 or around that time, the appetite usually starts to come back around.
But as day 100 approached, I didn’t experience any noticeable improvements. My bone marrow biopsy returned perfectly normal which my family and I were thrilled about. Some of my preventative medications were discontinued so I was able to cut down on my pill count each day. The news I wasn’t thrilled to hear was that I wasn’t close to getting my PICC line removed yet. I had to be off of my daily magnesium infusions for that step to occur. For my magnesium levels to return to normal range, I would most likely have to be off of my tacrolimus. The tacrolimus was going to be around for a few more months still so that meant continued magnesium infusions each day and of course, the PICC line staying in my arm. Eventually, I would be moved from a four-hour daily infusion to a two-hour daily infusion. But for the time being, I had to stick it out with the PICC line and get the magnesium that I needed.
It was after that appointment that made me realize that there was no set day that would make me feel like me again. There was no day that everything was supposed to fall into place. I had to go for it myself. All of that summer, I waited for that “snap of the fingers” to turn it around. Many of the limitations I had put on myself were self-imposed. Nobody was telling me I couldn't put weight back on.
Nobody said I didn’t have the strength to go on a long walk. Nobody said I wasn’t able to be up on my feet for longer than fifteen minutes. But I told myself these things and that was the catch. I had to believe in myself before I truly believed in my own ability.
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The start of the new school year was right around the corner. With COVID cases being down in the area, classes were back in-person. I was so nervous about going back to class on campus. I was afraid of getting sick from being around others. I still had my PICC line in, so I had to wear my black arm sleeve at all hours of the day. I didn’t want people to look at me any different because of it.
In fact, I didn’t want people to look at me at all.
During the summer months, I always wore a pair of gym shorts and a tee shirt. At that point in time, I had not worn a pair of khakis or jeans in months. I pulled out a pair of khaki shorts to try them on because that’s what I planned on wearing to school at the start of the semester. Poof. My shorts slid right down my legs as I buttoned the waist. I lost so much weight that my old clothes no longer fit me.
It was time for the first day of class. I didn’t feel confident in myself going up to school on my own. For months, I went everywhere with someone else. I felt I needed backup in case something went wrong. From being isolated in a room by myself for hours on end in a hospital bed, months later I walked into a classroom with over one hundred other people. I felt “out of the loop” socially. I was put in such extraneous circumstances throughout treatment, so I didn’t get to chat much with other people.
And when people did talk with me, many times, they were asking about my health. In a way it felt nice to be back amongst other people, but I also felt so different.
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The Ryan Scanlan that walked into that school two years ago looked and thought completely different from the Ryan Scanlan walking into the school that day. I had to convince myself that it was alright. Some people were surprised to see me and asked how everything was going. “You look a little more thin” and “What is that sleeve on your arm” were some of the comments I heard.
My insecurities about my appearance started to itch me again. I know none of those comments were meant to be offensive, but I personally wasn’t happy with the way I looked. The problem was I still cared about what people thought about me. There is a quote I once heard that relates to this situation. I can’t attribute the exact person that said it, but it goes something along the lines of, “When you’re 20 you care what everyone thinks. When you’re 40 you stop caring what everyone thinks. When you’re 60 you realize no one was ever thinking of you in the first place.”
To ease the social anxiety I was feeling, I remembered everyone is the main character in their own story. As much I tried to convince myself that everyone was looking at me thinking, “What happened to him?” Everyone was showing up to class with their own thoughts, problems, and feelings associated with their own life. How that kid that used to have nice blonde hair that suddenly went bald is not a thought people would hold on to (at least I hope not). Most likely, the other students noticed I looked a little different. But five seconds later, they would forget I ever walked into the room in the first place.
It was a five-minute walk to get to the subway each morning for school. The subway ride took roughly twenty minutes which was followed by another five-minute walk. So, we were looking at a thirty-minute commute each day. Not bad at all, for most people. But for me, my stomach just knew when I was far away from a bathroom. As soon as I reached the “point of no return” as I would like to cal it, meaning I was too far away from my apartment to turn back around, I had the strongest urge to have to use the bathroom. It was not your typical, “I could hold this in for a bit longer.” It was full blown, “I need to use the bathroom right this second” with beads of sweat forming on my forehead kind of urge.
This didn’t happen once a month, oh no it didn’t happen once a week, this happened just about every 111
single day. As soon as I got off the subway in North Philadelphia, I made a beeline straight for the bathroom. Because of this, I rarely had breakfast before coming to class. I was afraid it would only intensify how badly my stomach felt going to school.
Whether I liked it or not, getting back to a real-life routine was tough for me. It took extra effort and energy to do the little things. I still got out of breath going up and down the staircase. I was still as skinny as can be. But now, I had to try and balance the normal life of a student along with these challenges. Similar to the year before, I had days when I knew I needed to get assignments done or study for an upcoming exam but would be blind-sided by my health. The migraines I had been experiencing persisted for weeks on end. Oddly enough, those migraines came almost routinely on a Monday afternoon. Anything I had to get done from around four in the afternoon onward was tarnished by my ruthless migraines. Whatever I had for lunch that day was vomited up in the afternoon. Any schoolwork or time outside turned into sitting on the recliner with my eyes closed, hoping the pain would soon pass.
There was one day that I had a group project due the following day, so my group met as a team on Zoom. I was dealing with a migraine the past few hours so on the call I couldn’t concentrate on anything anyone was saying. I just shook my head “yes” and made trips to the bathroom to vomit after saying “Uh, I’l be right back.”
Sleeping at night turned into vomiting in the bathroom only to find myself crashing on the couch to save myself the extra couple of steps for the next time I had to run in. I showed up to each Tuesday morning class like a zombie. I didn’t sleep much and had little to no food in my stomach. Those migraines made it a tough fall semester. I couldn’t wait for the day that I could just show up to school and not have all those worries about my health holding up.
The migraines were a mystery to the medical team. I asked,
“Is it common to get migraines like this after transplant?”
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“No, we haven't seen this before,” was the response from my nurse practitioner. “We should get an MRI to make sure there is no bleeding or anything going on.”
That immediately brought back terrible flashbacks from when I relapsed. Laying in a tight, congested MRI machine with my eyes closed hoping and praying that nothing bad came of it. Luckily, the MRI revealed nothing abnormal. But, we still had no idea what the cause of my migraines was.
After suffering from two migraines in one week, we started to get desperate to find a solution.
At my last few doctor’s appointments, my blood pressure was running high. Especially for a guy who was only in his twenties. My nurse practitioner went with an aggressive approach and decided to discontinue my budesonide (which was already being tapered down) and started me on amlodipine which was a blood pressure medication. It definitely wasn’t a good feeling knowing I would be on a blood pressure medication in my twenties, but we had to try something. Both tacrolimus and budesonide could increase blood pressure. My opinion was that the combination of both of these could have been causing my migraines. To further support my rationale, the migraines started shortly after I began taking budesonide. We couldn’t get off of the tacrolimus just yet so removing the budesonide was the next best option. I just hoped the switch would pay off.
Being off steroids certainly had its benefits. Namely, I no longer experienced any more migraines. After suffering from a migraine almost weekly, it was incredible to not have to go through that anymore. When a Monday came around, I didn’t spend my evenings in a dark apartment pacing back and forth to the bathroom to vomit. I no longer felt like a zombie going to Tuesday morning classes.
On the contrary, being off steroids made my stomach begin to act up again. Those times when I felt like I needed to use the bathroom became the, “No, you need to go right now” trips once more which made my morning walk to school not so pleasant again.
The toughest part of being taken off the steroid was that I lost the energy the drug provided for me. Over the course of the past month, I did feel more energetic. I was able to wake up earlier and I felt more willing and able to put strain on my body by moving more frequently. But, when I stopped 113
taking the medication, I felt that it suddenly disappeared. My walks were more strenuous. I didn’t want to get out of bed in the morning. I just wanted to lay on my couch whenever I could.
Was this how my energy level was going to be after my transplant for the rest of my life? I had waited months to get my energy back, only to realize what I thought was progress turned out to be side effects of a medication I was taking.
The third wall of my recovery was painful to get down. Just when I thought I was starting to gain momentum, another wrench was thrown my way. The non-stop trips to the bathroom. The migraines attacking every single week. The plummet in my energy levels when I was taken off budesonide. Each of these obstacles made me question my beliefs about making a full recovery. But when I really struggled, an old image kept surfacing in my mind.
It was me. My eyes were black and blue from puking the night before. I sat in the dark hospital room with the IV pole standing next to me. Tears were rolling down my face. Back then, life beyond those four walls felt unimaginable. So, if I was able to make it through that and still be here today, I had to be able to make it through the recovery.
When I am asked when I felt “back to normal again” after transplant, my reply today is, “When I chose to change my mindset on how I viewed my recovery by telling myself I had the power to get back to where I wanted to be.” In moments of self-doubt and disappointment, I had to remind myself of this: I was in control. As I mentioned previously, the first time I planted this seed in my mind was back around day 100 when I realized that day didn’t fix everything for me. I was so caught up in that end goal of being “normal.” What I missed was the most important part, the journey.
In many ways, I started my life from scratch after the transplant. Feeling comfortable walking, eating meals, growing hair back that I had lost, and finding purpose in each day. I envisioned what I used to look like prior to cancer treatment and kept comparing myself to that image. What I should have been doing was comparing myself to my own image on day 1 of transplant. I made progress during my recovery, but I never took time to acknowledge it and process how I made it come true.
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I will always remember one day when I was up making myself breakfast. I had eggs cooking on the stovetop with bacon sizzling in the oven. On the counter I had a glass of water poured for myself with my plate, fork, and knife laid carefully. Months or even weeks before that day, I couldn’t have even imagined being strong enough to do all that myself. I was so blinded by my end goal that I wasn’t realizing those small victories in my recovery. Like Joanne and Sean reminded me while I was in the hospital focusing on my neutrophil levels hitting the right numbers to send me home, there is always something worth celebrating over. We just need to step back to observe every once in a while. The problem is, we always fixate on the end goal. And as many of us have realized, once we hit that end goal, it doesn’t feel as good as we thought it would.
The true happiness lies in knocking down the walls before that. To conquer our self-doubt and our desire to stay complacent is the most rewarding experience of it all. It is essential that we reflect on these moments. There is a philosophy that pain + reflection = progress. Many of us want to progress, but never put ourselves through pain. Many of us feel pain, but never take time to reflect. By reflecting, we are able to pinpoint our catalysts in overcoming difficult situations.
What did I do well in that moment? How could I have been better? What am I most proud of doing in that moment? These are some questions we need to ask ourselves. Then, we may use those lessons to overcome future obstacles. Then, we may progress.
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“Out of the night that covers me,
Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.
In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.
Beyond this place of wrath and tears
Looms but the horror of the shade,
And yet the menace of the years
Finds and shall find me unafraid.
It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate,
I am the captain of my soul.”
- William Ernest Henley
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On my twenty-fourth birthday, I started writing down my goals. With the mindset of having to put in work to get where I wanted to be, it was time to start taking action. With months of contemplating everything you could possibly think of about life, I was ready to start living again. With that, I started making to-do lists for each day. It was a way to hold myself accountable and to map out the day. Taking my medicine and studying for exams were on my list almost every time. I made sure to include enjoyable moments too like walking around the neighborhood with Madison. Visually seeing what I had to get done on paper and checking it off was satisfying. For my future goals, I wrote them down on a sheet of paper which now is posted right next to my bedside (which still, to this day, is there). The purpose was to see them each day to be reminded of what I was working towards.
The road to recovery I traveled looked like a zig-zag line that rose and plummeted with no correlation. It was the most frustrating and rigorous path I have ever taken. But I was able to extrapolate those lessons I have learned and apply them to other facets of my life. The goals I wrote down on my list were ambitious but achievable.
I recently bought a bike at the time, which I thought would be a great way to test myself physically again. Madison and I went on rides together in the city. To start, we would do about three to four miles. I have to say, Madison would cook me on those rides. I tried as hard as I could to keep up, but I couldn’t hang with her. My legs looked like toothpicks pushing down on the bike pedals. That’s 117
what losing all of your muscle and not being able to eat will do to you. I had to be patient with the journey. I would get my strength back, I just needed time.
After our rides in the city got easier, we ventured out to Wissahickon Park. It is a beautiful, wooded path just outside of the city. The challenge of this was that this trail actually had hills unlike the flat terrain of the city. Just as I thought I was getting the hang of this whole biking thing, I was humbled by the rolling hills of the trail. The whole trail was about five miles long. So, going to the end of the trail and back was just over ten miles. It took a few trips to the park for us to make it the whole length of the trail.
The first time we did the full ten miles, I remember telling Madison that she didn’t have to slow up to ride with me on the way back to the car. Before I knew it, I couldn’t see Madison anymore because she was already so far ahead of me. The gentle uphills were killer. A woman was doing a light jog right next to me on the hill and passed me with ease. At that point, my quads were as sore as could be.
Then, a young guy passed me on his bike that looked to be around the same age as me. The voice inside my head started talking to me. “That is what you are supposed to look like. But you aren’t there yet. You have to earn that.”
I pushed through the remainder of the trail chasing after that “healthy version” of myself. I tested my fragile body to the limit. Once I made it back to the car, I remember resting my bike on the ground and feeling sick to my stomach. I asked Madison if she could drive us back home. That’s how you know I real y felt beat. Despite how poorly I felt in the moment, there was a sense of pride in myself. “I could do more next time,” I told myself. When I returned home, I wrote down on my list of goals, “I will bike twenty-five miles.” And there, the chal enge began.
This was around the time of year when I started reflecting back on the challenges I had faced through the transplant process. Through reflection of my hospital transplant stay, I pondered over the words that were said to me, “It’s just four walls.” This is where the metaphor was born, through reflection. Whether I knew it or not, I was breaking down those walls to make it out of the hospital and 118
back home. Accepting the challenge. Realizing it will be difficult and I will feel uncomfortable. Feeling like I want to quit and that winning isn’t an option. Feeling motivated only to feel that urge to quit not long after. Until, finally, the finish line is just ahead. And the fourth wall comes crashing down.
I worked my way up to biking fourteen miles on my own. I was able to complete just over half of my goal of twenty-five miles. Then I built up to a sixteen-mile ride. My legs were becoming stronger.
The weather was starting to get cold too. It was early November and the cool fall breeze made biking not as enjoyable as it once was in the late summer. There was an upcoming Saturday with a high temperature of fifty-six degrees Fahrenheit. I circled that day in my head and said, “That’s the day.”
I woke up that Saturday, had a small breakfast, then Madison and I drove over to MLK Drive.
There was a nice bike loop in that area. One side of the river had a thin trail with plenty of runners, bikers, and walkers. On the other side of the river was a multi-lane road that was closed to motor vehicles on the weekend making it the perfect place for a bike ride. I accepted the challenge and hopped on my bike for my attempt at the twenty-five-mile ride. I said to myself, “Remember, it’s just four walls. I’ve been through this before.”
First, I crossed the bridge over towards the more crowded side of the river. Initially I would have liked to do as many loops around the river as necessary to reach twenty-five miles but quickly realized I was much better off staying over on the less crowded side. Despite the previous rides I had done with fourteen and sixteen miles, I felt fatigued by mile six. I thought to myself, “What is going on with me today?” “How am I already hitting the second wall?” Like I had anticipated, I was already making up excuses for why I failed this attempt.
“I didn’t eat enough this morning. That must be why.”
“I just want to grab some lunch. I can try again another day.”
“Instead of doing twenty-five miles, maybe I can just do twelve and a half.”
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It was human nature kicking in. I felt the need for comfort. The fear of failing crept into my mind.
The excuses continued to consume me. “You just had stem cell transplant a few months ago! It’s too soon for you to try something like this.”
I shouted in my head, “Just don’t quit on me!” Now was the chance to finally prove to myself that I can put all this cancer nonsense behind me. To show myself that regardless of everything I went through, I would still come out stronger. All the nights I had crying myself to sleep were burned into my memory. Again, I pictured myself laying in the hospital bed. I sat with the look of defeat in my eyes.
That same face began to laugh at me. “You went through all this, just to sell yourself short? Have you learned anything from this? Stop feeling sorry for yourself and pedal.”
I overcame that first itch of quitting, and I edged closer to the midway point of the ride. My back ached. My legs started to feel like the jello I was fed in the hospital all of those months. “Just keep pedaling,” I repeated over and over. “Stay focused. Don’t be a prisoner to your emotions. Don’t let your thoughts continually remind you how your back and legs are feeling.”
I tried every trick in the book to prevent myself from quitting. But, yet again, I couldn’t help to think, “Maybe I should just call it at eighteen miles.”
“I really feel like stopping to have some lunch soon.”
There’s a beautiful quote I once heard that resonates with this feeling. “We give up what we want most, for what we want now.” I wanted to finish that ride more than anything. It would be a breakthrough moment for me both mentally and physically. Despite how badly I knew I wanted it, my mind wanted to quit. And it wanted to quit now.
Remind yourself who is in control. Don’t give in to the “sweet talk” your mind tries to ease you into. In these moments, listen to what goes on up there. I mean really listen. Take notes. I noticed that when faced with a challenge, the voice in my head increased in both frequency and intensity. You will never be able to completely suppress them, but you can learn to tame them.
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During the bike ride, it felt like my mind was screaming at me every five seconds. “Stop! You aren’t strong enough to do this. Just call it quits already.” From the technique I learned during my transplant stay, I focused on what I could control. I focused on what the most important tools were to help me finish the ride. “Just keep pedaling. Don’t let those thoughts take over. Focus on your breathing and keep moving those legs.”
Each mile became more demanding. No matter what type of cushion you put on a bike seat, eventually, it feels quite uncomfortable. Madison sat off the side of the trail on one of the benches. I waved to her each time I passed. From one end of the path to the other was only about two miles. It got old very quick riding back and forth on the same road. But being able to see Madison each lap was the highlight of my ride.
As I now approached mile twenty, the voice inside my head flipped the switch. Instead of my mind trying to persuade me to quit, it suddenly started saying, “There is no way you can stop now.”
That’s how I knew I knocked down the third wall. Now, it was time to finish the job. I was in control of the outcome. Not the voice inside my head that had been telling me to quit.
Down and back. That is all I had to do to wrap up my twenty-five-mile bike ride. As I rode on my second to last lap, tears filled my eyes. I never thought I would make it to that point again. I had hit what felt like rock bottom multiple times over the past year and a half. Looking back, the climb back from those moments was such a beautiful experience. Of course, I was blind to that idea during the time. But each day, I was slowly growing as a person. I had to adjust my life in so many ways, but I still managed to get by.
The tears rolled down my face on my last few miles. My diagnosis, the pain from my first bone marrow biopsy, the hematomas in my arm and leg, being told about my relapse and breaking the news to my family, sitting alone in the hospital and thinking about hurting myself to escape to that terrible life, puking so frequently that my eyes turned black and blue during my transplant stay, losing forty pounds 121
twice. All of those moments that tried to bring me down. Yet, there I was, about to bike twenty-five miles.
Just under two miles to go. Madison biked alongside me as I struggled to make it to the finish line. Every part of my body felt sore. I desperately needed to rest. I put my head down and pushed down on the pedals as hard as I could. I didn’t want to look up and see how slow I was moving at that point. I stood up on my pedals every other minute to give my legs a breather.
I rounded the corner and faced the worst part of the lap. The final uphill straightaway. I could have screamed because of how bad my legs hurt. “Keep pedaling! You are so damn close. Finish strong!”
I reached the top of the hill, hopped off my bike, and let it slam to the ground. My legs barely held my own weight as I tried to stand tall. I looked at the GPS on my phone, and there it was: 25.0
miles. What an amazing feeling it was to hug Madison after seeing that. It was that moment that revolutionized my strategy for attacking life’s chal enges. Just as I had broken out of the four walls that tortured me in the hospital, I now had to break down the four walls that I kept myself in with each goal for the rest of my life. That day symbolized what I considered to be “the end” of my recovery. I now understood that the strength inside of me was always there. I just had to be willing to search deep down to get it.
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Just a month after that bike ride, I was finally able to get the PICC line removed from my arm.
That meant I was able to start lifting weights again. That hobby was essential for me to “feel like me”
again. After almost two full years without lifting weights, my body was puny. From being able to squat well over two hundred pounds before cancer treatment, suddenly, forty-five pounds on my shoulders felt like plenty. It was a total reset from a fitness point of view. From what I had learned during the transplant journey, I did not fixate on how I used to look or how strong I used to be. Now, my goal was to enjoy the journey of getting back to a strong and healthy version of myself, no matter what that may actually look like.
I experienced a full-circle moment during the spring of that year. On Fridays, a group of friends and I got together to play basketball. It felt amazing beyond words to be out and active again. On one particular Friday, we pulled up with our usual group. There were a few others already shooting around so we set up three teams of four to run games of four with one team sitting out. One of the guys looked oddly familiar. I thought it may have been a certain someone who worked at the hospital, but I couldn’t tell because he was no longer wearing a mask in front of me. Before we started our first game, we introduced ourselves to those we didn’t know that were on our team so we knew everyone’s name.
“What's up man, I’m Ryan,” I said to him.
He replied with, “Sean.”
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Wait a minute… No way. There’s no way that’s the same Sean that took care of me in the hospital. But wait, it has to be. I knew he looked familiar, and he did say that he lived close to me in the city while I was in the hospital. I wondered if he would be able to recognize me now that I had hair on both my head and my face. Ah well, let’s play this game and I wil ask him after.
Throughout that game, all I thought about was how that might have been Sean. After we played, I got a drink of water, and I approached him.
“You said your name was Sean, right?”
He just started laughing. “Yep.”
“Do you happen to work at Penn by chance?”
“Yeah, that’s me,” he replied as he continued to laugh.
We immediately hugged right after.
What are the odds I would run into one of the best people to take care of me almost a year after being in the hospital? That moment with Sean on the basketball court was one of the most heartwarming experiences I have ever experienced. I was able to thank him for all that he did for me.
Almost a year ago, he was giving me medicine and nutrition around the clock to keep me functional.
Now, I was out playing basketball with him. Life always has a way to reconnect you with the people you are supposed to see, and I am so glad I ran into Sean again that day. I hope he was able to see the impact his job has played in my life by transforming my health in the past year. Because of many great people like Sean, I am blessed to feel healthy once again.
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No matter if we live until we are one hundred years old or twenty years old, we never really get enough time with those we love most, do we? We may never know when our last moment will be with the people we love. Everyone always says to one another, “I wil see you soon.” Maybe you wil , and that’s great. But what if you don’t? What if it is months or years until you see your friends and family again? Or you may never see them again at all.
Knowing that our time is limited with one another should stress the importance of expressing our love. We never want to imagine what it would be like to lose people we are close to in our life. From my experience, I had to imagine that. I was forced to imagine it far too many times. I knew what I was going through was dangerous and perhaps even deadly. I was blessed with an outstanding number of people to help me every step of the way. A network of people giving their support to cheer me on to the finish line. I will always remember one of the beautiful messages that I received when I was first diagnosed with cancer. It read, “I hope one of the things you can take away from this is truly how many people care about you.”
Truthfully, I was blown away by the support I received. I couldn’t have asked for anything more. “We are only as strong as we are united, as weak as we are divided,” said J.K. Rowling. The power of friendship, love, and family played a tremendous role in my ability to make it through two battles with cancer.
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Friendship
When I was first diagnosed, I received a plethora of text messages from my friends. I cried reading each and every one. As I laid in my bed fearing for my life, my friends were able to give me hope. Seeing the names of my friends from childhood, high school, and college all pop up on my phone sending words of encouragement reminded me that I wasn’t alone in my fight. One lesson I learned from my experience is to not wait to express your love for your friends for a scary moment. Express that love for them whenever you can. For guys especially, we don’t express ourselves to one another as much as we should. Make sure you know what is going on in your friends' lives.
“What has so and so been up to?”
“Oh, I don’t know. Nothing is new with him. He is just workin’.”
“What does he do for work?”
“No idea. I think something in business.”
Far too often, we get caught up in our own lives and forget to check in on those that are important to us. Blocking off just fifteen minutes in your day to call a friend could go a long way. Not calling to ask anything of your friend, just calling to say, “Hey man, I was thinking about you.”
Each friend of mine handled my diagnosis differently. When I was around some friends in person, they acted like nothing ever happened. We laughed and joked like we always would. Others seemed more reserved. They always asked about how everything was going, how I was feeling, what the doctors had been saying, and what steps would come next. I appreciated both approaches for their 126
own reasons. Some days I wanted to forget this had ever happened to me. I wanted to live life like I was “normal” again. Those days felt amazing to be around my friends that stil loved to laugh and joke with me. Other days, I just needed someone to talk to and let out some emotion. Those days it felt relieving to be around my friends who asked those types of questions.
Socially, I felt out of place. I went from conversations solely about my health with my family and healthcare team to conversations about anything and everything with my friends. Especially due to COVID, I was far removed from many social settings. Truthfully, I almost forgot how to act in public.
Most activities that people my age would do like going out to eat, hanging out to watch a sporting event, or going out to a bar were a few things I have not done for months or even years at that point. It absolutely changed how I choose to spend time with my friends today.
Like most people in their twenties, I used to think drinking at the bar was a great time with friends. After being removed from that setting for years, I have realized how it was unnecessary in my own life. I am not knocking that lifestyle at all. I am just no longer a part of that crowd. I enjoy quality time with my friends and being able to have meaningful conversations. So many times, we choose places that aren't possible to have those talks. Being surrounded by many other people with music blaring in my ears wasn’t fun for me anymore. Enjoying dinner together and having conversations with one another is now what I cherish most with my friends.
Most people my age will never experience what I had to go through, thankfully. And I understand that. All I want to do is share my perspective that may open up the eyes to some of my friends, and perhaps friends of others. I have no idea what life has in store for me tomorrow. And you that are reading this book, neither do you. The unfortunate truth is that cancer could come back any day now and remove me from the life I live today. Even if I wanted to sit down and catch up with some of the friends that I love so dearly, I wouldn’t be able to. The friends I haven’t kept in touch with for months may not even hear the bad news. Remembering that is a real-life scenario for me that makes me want to reach out to all of those people that are close to me whenever I could. It makes me want to be a 127
better friend and not be afraid to say the, “I love you because” even though I may see that friend next week.
Out of fear of missing someone from this book, I tried to avoid using specific names of my friends throughout. It’s not that I don’t want everyone to know how supportive and loving they have been towards myself and my family. I was blessed with so many lifelong friends that I could write for days about all of the moments that stood out to me from them.
The phone calls while I walked the halls in the hospital and the texts of encouragement. The friends that visited me while I was in the hospital. The friends that came to visit me behind my house because I was too afraid to be around others while indoors. The video message I received when I was first diagnosed. The phone call to check in with me when I first relapsed to see how I was holding up.
The friends that surprised me when I first finished treatment and was able to be around others again.
The friends that came together to surprise me for my one-year post-transplant milestone. The friends that came together to celebrate my second-year post-transplant milestone. The pictures, the videos, and the memories all shared with me to cheer me up during tough moments. Giving Madison and my mom rides to and from the hospital to visit me. Allowing my mom and Madison to stay with a friend to remain close by for those visits. Raising money for my family and I to pay for healthcare expenses.
Receiving beautiful cards from many friendships made at home, school, and work over the years. So many unbelievable moments from the best friends I could ever ask for.
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Love
Almost a year and a half post-transplant, there was a stretch of days during the summer of 2022
that scared me to death. The weather was starting to get hot as I traveled up to campus each day for my rotation. I wore my dress shirt and tie which didn’t fare well with the heat. I started to sweat through the back of my shirt, so I hung my bookbag over my right shoulder when I traveled outside. One Sunday morning before I went in for a work shift, I looked down at my right shoulder in the bathroom. There was a petechiae-like mark right where I normally carried my book bag. “Here we go again,” I thought.
“Why does this have to keep happening to me? Can’t I just enjoy my life for a little bit? No, it can’t be.
It is just a mark from my bookbag.”
I still went to work that day. I kept my mouth shut and chose not to speak much. No matter what I did that day, I thought about how I might have relapsed from cancer yet again. I couldn’t think about anything else. I had no idea how I was going to break this to Madison. I walked to the back of the pharmacy many times that day to look at my shoulder hoping the mark would fade by the time I got home. Each time I looked, it looked like it grew darker. It slowly ate away at my mind, and I couldn’t wait to get answers. Al I wanted was to get bloodwork done to make sure this wasn’t happening again.
My shift at work finally ended and I went back home.
It warms my heart how Madison greets me when I walk in the door. She always makes me feel so special and loved, no matter what day it was. Having her greet me on that day made it hurt so much more. I went to the bathroom one last time to see if the mark was stil there… and of course it was. I 129
stepped out and said, “I don’t want you to freak out, but I saw this on my shoulder this morning.” As I took off my shirt and pointed to my shoulder, I saw the excitement in her face fade away. We didn’t know what it was yet, so we didn’t want to jump to any conclusions.
All I remember was sitting down on the couch and beginning to cry. Madison went and knelt behind the kitchen cabinets because she didn’t want me to see her tears. She stood back up and came over to me and we hugged so tightly. We shed so many tears together that day. It wasn’t the cancer that I cried about. It was the thought of leaving this world without Madison that truly broke my heart.
Long story short, those marks on my shoulder were actually from the bookbag and nothing else.
It was an evil reminder that I should be grateful for the life that I now have. It also served as a reminder that the woman I love so dearly, our time on this Earth together is limited too. More than ever, I reflected on everything she has done for me throughout treatment. The strength and maturity that she possesses is undeniable. I know many people like to comment on how strong they thought I was during my treatment. But it is time for you all to hear about the real hero of the story, Madison.
Neither of us knew how to handle the news when it first broke from my diagnosis. We were both barely young adults at the time when we were about to move in with one another. Madison gave me one last hug before I was carted away onto the ambulance to get transferred to Philadelphia. From that moment forward, I admired the strength she was able to wear on her face, especially when I wasn’t able to. Energy can be infectious, and she always infected me with her positivity and optimism even during my worst moments.
Madison came to visit me during my initial hospital admission many times. There was a day in particular that stood out to me. After my lumbar puncture when I began to feel sick, she visited me shortly after. While I sat in my bed puking into a bucket for hours, she sat right next to me through it all. I didn’t have the energy in me to even speak to her, yet she sat quietly and patiently waited in case there was something I needed. I drifted into an hour nap. When I woke up, she still sat there next to me. She too had fallen asleep but with her hand resting on top of mine. It was small acts like those that 130
had such a major impact in my recovery. As my mom had always joked with the hospital staff, Madison was truly my best medicine.
I had issues believing in my abilities throughout the process. I often felt discouraged and lost hope. As I walked the hospital halls with my feet dragging beneath me, I stared down at the colored tiles. I feared that at any minute I could easily pass out with how lightheaded I felt. “You could do it. Go as slow as you need to,” she would say to me. She pushed the IV pole for me and held onto my arm.
She quite literally held me up when I felt like falling down.
I am most proud of the growth Madison and I had together throughout our experiences. We approached every chal enge as a team. It was never a “me vs you” mentality. For me, I lost sight of that mindset a few times. But she never did.
In the middle of the night when I broke out with a neutropenic fever, I was so mad she called the doctors to let them know. I got mad at her for doing the right thing! What an unbelievable thing for me to say. She knew how much I hated going into the hospital, and letting the doctors know would sign me for just that. I was a baby about it. I complained how I would be just fine, even though we both knew how serious a neutropenic fever could be. After one last complaint to Madison on the way to the hospital, she pulled over on the side of the road. Past midnight and in the middle of the pouring rain, she pulled over to remind me of our team concept.
She always knew the right thing to do and did it regardless of how either of us felt about it. That is one of the many ways she was able to show her true love for me. Doing the right thing despite how it made her feel. I’m sure she did not want to wake up in the middle of the night, go get the car in the pouring rain, and drive me over to the hospital. But she did it anyway. Not just for me, but for us.
And so, we went to that emergency room that night. I got the appropriate treatment I needed, and everything went okay. In a strange way, I felt at home with her that night in the emergency room.
Even with the glass door in front of me, bright lights, and constant buzzing out in the hal s. That’s when I realized home wasn’t a place. Home was being with the people you love. Whenever she was with 131
me, I was home. Had I been alone, I would have succumbed to the stressful and chaotic environment I was placed in. Instead, we sat in that uncomfortable little room while laughing and smiling with one another.
My recovery from transplant was a stressful time not just for me, but for those around me as wel . It was taxing on both the mind and body. My attitude wasn’t helping either. There was a lot that had to be done for me. Feeling weak on my own legs, taking over twenty pills a day, and creeping my way towards malnourishment as the days went on because of my lack of appetite. Madison worked a full-time job remotely at the time. She organized all of my medications for me in a pill container. She prepared my magnesium infusions for me after my transplant. She flushed the lines of my PICC each day. I didn’t have to raise a single finger to set any of that up for myself.
When I was feeling too sorry for myself to even get myself a glass of water, she came right out to do that for me. She prepared every meal for me. I know how daunting that was for her. My stomach couldn’t tolerate much so I was extremely picky with my meals. Regardless, she always made sure I was eating as much as I could when I could. She did everything in her power to make sure I was getting the calories I needed to regain my strength.
Our daily walks are a staple of our day I will cherish forever. We would take in the incredible neighborhood we were blessed to live in together every single day. I always said to Madison that we have our best conversations on our walks. There are no phones out and no distractions. It was just us soaking in the fresh air. Even though our walks were few and far between what we could do now, we made the best of our time together. Walks that could have been a mile long turned into one to two city blocks long. My calves cramped up constantly. The summer heat irritated my sensitive skin. The warmth of the sun caused the painful “zaps” all throughout my body.
On our walking route straight up 13th street, there was a home with a garden fountain right next to the staircase. The aroma from the fountain was so refreshing. Although it was just a small fraction of my day, it meant the world to me to be able to “walk to the fountain and back” with her. Many days I 132
laid on the couch for hours. But, walking to get a smell from the fountain was one of the lone highlights I would experience on a given day after transplant.
I truly cannot imagine life without Madison. I don’t know if I could have made it through cancer treatment without her by my side. She undoubtedly grew as a person just as much, if not more than I did throughout our journey together. The way she stuck with me no matter what our next battle was, I will never forget. She is an inspiration to me how she is able to carry a loving heart, be patient with those around her, and express gratitude whenever possible each and every day I spend with her.
Many people comment on us as a couple how we seem “older” than we actually are. For me, that’s easy, I know they see the receding hairline. But for Madison, it is the way she carries herself.
She has a calm and confident demeanor about her giving off the maturity that many others notice. She was put in a position of being a caregiver at an age that most don’t even understand how to care for someone else. She is a role model for how caregivers should aspire to be. I hope you all understand that although patients have a difficult time, caregivers have it just as hard. However, many times people don’t notice the chal enges caregivers have to overcome to take care of the people they love.
Madison, thank you for loving me unconditionally. You loved me regardless of how I looked.
You loved me regardless of how I felt and you loved me regardless of how you felt too. You are an incredible human being, and I am so blessed to be by your side.
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Family
Madison and I were about to drive back to Philadelphia after a weekend trip back home. I was in between consolidation cycles of chemotherapy at the time. My family helped pack up the car for us and gave us hugs goodbye before we left. When I hugged my dad, he looked at me and asked, “Are you okay?”
I hated how my life was going at the time. I had a short temper and let loose whenever I could.
“I AM NOT SICK!” I screamed at my family as I headed towards the car.
I slammed the door shut and sped off as my family watched us drive away. Tears rolled down my face as Madison and I made the two-hour drive back to Philadelphia. I had yelled at Madison for the first time in my life just weeks before and now I did the same thing to my family. I kept letting out negative emotion to the people that cared most about me. In life, some friends may come and go.
Some people you work with for a few years but then never see again. But family, family will always be there for you no matter what.
My brother was the first person I cried with when I was first diagnosed. We were at the hospital in my hometown alone in the hospital room together before we both started crying. I wanted to cry the whole time I was there, so it was a relief to final y let some of it out. I wasn’t able to see him for a whole month after that. When I was on the phone with my mom one day during my diagnosis month, she told me about how Eric was frustrated that he felt he couldn’t do anything to help me. She said he had been 134
building his strength by squatting for the past few weeks. He wanted to make sure that if I couldn’t make it up the steps alone at my apartment that he would be able to carry me up the stairs.
“My body is stil strong, Mom. You know that. You are crazy if you think I need to be carried up a staircase,” I pleaded.
I said this knowing that around that time, I was being helped by a nurse to get to the bathroom.
I truthfully didn’t know if I could make it up a staircase. But succumbing to the possibility threatened my self-confidence in my physical ability. I will always love my brother for thinking of ways to help me even when he couldn’t be with me. I know it was a tough spot he was put in by having someone he loves suffering but not being able to physically be there to help for weeks at a time. When I asked my doctor about how my family could help protect me during the post-transplant recovery period, his response was to have my family get their vaccines up to date. My brother went right to a doctor and caught up on all of his preventable vaccines for me. When it was time to find a donor for my transplant, he was eager to get himself tested. He always tried his best to do whatever he could for me.
I will always remember the hug from my dad before he drove me over to the hospital for the first time. We both were terrified. That moment reminded me that no matter what, my family was going to be there for me.
My Dad is the chef of the house. During my chemotherapy treatments, my body always had the weirdest cravings for some of the meals he cooks. All I had to do was say the word and he would have endless supplies stocked up in my fridge. The soups he made were calling my name every time I was about to get discharged from the hospital. I was extremely picky with what I ate for months, but he found a way to make sure I had something to eat whenever I needed it. When I was in the hospital during my transplant stay, he did a fantastic job of scrubbing my apartment head-to-toe to limit my chances of getting sick from any source. He also took time aside from running his business to make drives back and forth from my hometown to Philadelphia on both weekends and weekdays so I could see both him and my mom.
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My Mom is one of the most caring human beings you will ever meet in the world. But we butt heads a lot during my treatments. She tried doing too much for me while she would visit in the hospital.
I am sure most moms would be like that, but it wasn’t always easy to handle. As I struggled to accept the diagnosis and the side effects, being able to do things on my own was my own way of proving to myself I could stil be me. She didn’t view it like that. She tried to do as much as she could for me so I could lay down to relax and recover. But with that, I also started to lose strength in my body because I spent hours upon hours in that bed.
In a way it felt like she treated me like I was a little kid again. She was very overprotective and wanted to be heavily involved. That was overwhelming for me at the time. At that age, that was when I was first becoming adjusted to being independent and not having to rely on my parents for everything.
But going through treatment changed that dynamic right back and understandably so.
I could have treated my mom better during her visits to the hospital. After spending hours in the same room with someone day after day, you run out of things to say. For me, I already wasn’t talkative during treatment. I mostly let my own thoughts keep me occupied for the day, for better or for worse. Regardless of how poorly I acted in front of her, she always loved me no matter what. Even when I wanted to keep quiet, she sat in hours of silence with me to make sure that she was able to smile at me whenever I looked at her. She was always willing to do anything for me whenever I needed it.
I don’t know if it was my own ego that prevented me from saying this all of this time, but Mom, thank you for all that you did for me. Even when I rejected your love and support you always stood by me. I wouldn’t have been able to make it through everything I have without you. As much as I tried to play off that I wanted to be alone in the hospital, I truly feared being in there by myself for too long. I enjoyed having you there with me, even if we sat quiet. I will always cherish our relationship together even if I may not always show it on the outside. I am the man I am today because of your endless support.
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I recognize that everything I have in my life today is due to the love, support, and sacrifice from my parents over the years. Anything and everything I could have ever needed in life, they were there to help make it happen. When times were rough during my treatments, they always were by my side and ready to help. They were patient with me as I struggled with my own emotional battles. I will forever be grateful for my parents. I hope to carry the love that they always have given me throughout my life and pay it forward to those in need.
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“I know of no better life purpose than to perish in attempting the great and the impossible.”
-Friedrich Nietzsche
Do you ever have visions of yourself doing something you have never done before in your head? For some reason, I continually had this vision of me up on a stage. I wore a suit, had hair on both my head and face, and I no longer was just skin and bones. I actually looked healthy. On that stage, I spoke about all of my experiences with cancer. I described the nightmare scenarios in detail that still haunt me to this day. I explained to the audience that having cancer is much more than most would think. It is more than just losing your hair and maybe a few pounds, as you all now understand at this point. I thought to myself, “Why do I keep having this vision in my head?” I didn’t know what to think of it nor did I understand how that scenario would ever happen.
They say that when a vision is repeated in your mind, God is trying to talk to you. Whether you don’t believe in religion or any form of higher being, someone or something is trying to show you that vision. It is meant to show you the path you are supposed to be taking. It is a sneak peek at what life is trying to offer you. You just have to chase after it.
The world has a weird way of working its way out for everyone. I truly believe that. “Everything happens for a reason” is a saying I will always remember. Pay attention, and you wil see moments that fall into place for you. You just have to keep your eyes open for them.
One day I walked down the steps of my apartment to see a huge sticker on the wall of my apartment building. The sticker read, “Phil y Fights Cancer” with a portrait of Rocky Balboa from the 138
Rocky films. Right next to that was an even smaller sticker of a red drop of blood with a QR code. This sticker was from the Leukemia and Lymphoma Society (LLS).
Did someone put this up for me? How did that person know I had leukemia?
I was stunned to see that posted on the wall. It turns out the business on the first floor of my apartment building was doing a fundraiser for LLS. Suddenly, I saw flyers all around the neighborhood to donate to the organization. What are the odds this happens in the neighborhood that I live in, right after I had been through treatment for leukemia? It was the biggest coincidence I could ever think of.
Still, when people came to visit my apartment, I joked with my friends that the city hung that up for me.
I had always wished I had someone to talk to during my treatment days. I wish I knew that someone was in a similar situation that I was in but still pulled through. In my mind, nobody was there to talk to me because that type of person didn’t exist. I was one of the few patients to be diagnosed in their twenties, I thought. When I dug through the internet, I searched for a story to read about someone similar to me. Many of the articles I read were not reassuring at all, which lead me back to the belief that nothing good ever comes out of searching down the “rabbit hole.”
I saw that sticker on my wall every single day. Along with that, my mind kept playing that clip of me speaking on a stage. I decided to look into the organization, what its mission is, and any opportunities for involvement. I found a volunteer position called a “first connection.” In this role, a volunteer would be matched with a patient based on a similar diagnosis, age, and treatment. It would be a way for the patient to hear from someone who was in a similar situation as their own but is doing great today. That sounded perfect!
I signed up for the position right away. I realized that since I didn’t have anyone to talk to during treatment, I needed to be that person for someone else. I could be that inspiration that helps bring cancer patients out of the darkness that the disease can bring upon someone’s life. I can be living proof that coming out on top is possible.
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Even though the position sounded like the perfect opportunity, I had my reservations about it. I had never had the chance to speak to another cancer patient aside from my brief conversation with the patient by the window during my transplant stay. I didn’t know if certain topics were going to provoke intense emotions while speaking to the patient. I worried that I couldn’t stay strong on the phone with them. What if speaking with me made them feel worse? How would I go about talking to the patient about touchy subjects? Should I not tell them about my relapse to prevent scaring them? I had many mixed emotions about the idea.
To be able to volunteer, I had to attend a training session to go over the “do and don’t” of the position. The conversation was straightforward, but also worried me about certain situations. I worried about giving off the wrong message to patients. I worried about speaking with someone that was very emotional on the call and that I wouldn’t be able to properly console them. I was never put in any of those positions before, so I didn’t think I would be able to handle it. But I put myself in their shoes. Not out of imagination, but because I have literally been in their shoes before. I couldn’t even fathom how much I would have appreciated talking to anyone when I relapsed. Just hearing that others have made it through treatment and back to a normal life would have raised my spirit and my hopes. So, I put all doubts in my mind behind me and walked into the role with an open and optimistic mind.
The limitation of being matched with patients based on similar age and diagnosis is that there aren’t many patients in their twenties being diagnosed with leukemia. And for those that were diagnosed, they also had to go out of their way to request to speak with someone through LLS. As much as I would have liked to have the opportunities to keep knocking at my door, I did not hear about any possible matches for months. It was disappointing for me. I really wanted to help out in any way that I could. I reached out to one of the representatives from LLS and I inquired about any other available opportunities. I made sure to say, “And I don’t mind speaking in front of small groups or even large groups.”
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There is an event that is popular with LLS called “Light The Night.” I saw flyers for this event while I was in the hospital. It takes place in individual cities and areas all around the country. Each location would have its own event once per year. I heard about the event, and I was excited to be a part of it. On the weekend of the event, Madison was out of town. So, I had planned to just show up by myself. I had no idea what to expect. And I didn’t know a single person there. I was just told to find one of the tents and I could help out by handing information about services provided by LLS to people that came to the table.
In Philadelphia, it took place outside of the art museum. It was a beautiful Saturday evening in October with music playing and families walking around. There was an amazing energy being there.
While at the event, each person was given a lantern. The color of each lantern carried its own significance. Red lanterns were held by those supporting LLS. Gold lanterns were held by those there in memory of someone lost to cancer. White lanterns were carried by blood cancer survivors. When the sun went down, we would all turn on our lanterns. While I was in the hospital walking around the unit, the image of all of the lanterns lit up at night stuck out to me that was posted on one of the bulletin boards. Now, I was going to be a part of that.
Even though I showed up by myself, I was introduced to so many people involved with LLS.
They made me feel welcomed and honored to be there. It was a heartwarming feeling knowing I was a part of that event. By the tent I was sitting at was a message board. People were able to write messages to the prompt, “I dream about a world where…” Many wrote about a world where blood cancers are fully cured.
A few messages caught my eye. One wrote, “I dream about a world where dads could live a full life.” Another wrote, “I dream about a world where families weren’t torn apart because of cancer.”
These messages weighed heavily on me that night. It made me realize the impact cancer has on not just me, but everyone. Al of those months, I wasn’t alone. I was a part of a much larger community. I just didn’t know it yet.
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As the sun began to set, everyone gathered around the stage set up by the art museum steps.
A few speakers came on stage to talk about LLS’ mission, the Light The Night event, and how they were personally impacted by cancer. As the night sky took over above, they asked that the lanterns now be turned on color by color. First, the red lanterns lit up for those there in support of LLS. Next came those with a gold lantern who were there in memory of someone they had lost. Finally, they called all survivors who held a white lantern to come in front of the stage. As we made our way in front of the crowd, everyone cheered for us. For the first time, I stood by many other people who had been through the same kind of experience as I did. We turned our white lanterns on, and I raised it as high as I could. I stared into the night sky, and I thanked God again for this life I am able to live now. It was a moment I will not soon forget.
Before heading home for the night, I met up with the LLS workers that I had been around the tent with. I was told about the “Student Visionaries of the Year” campaign. It was a fundraising effort done by high school students to raise money for research, patient education, and advocacy programs.
For each campaign, there is a position called the “honored hero”. The honored hero serves to put a
“face” to the fundraising efforts. A way to show the students that they are impacting real people’s lives just like myself who had been personally touched by blood cancer.
After learning about the campaign, I was asked, “Would you like to be the honored hero for this year’s Philadelphia area campaign?” I didn’t know how to process the question at first. It sounded like a fantastic opportunity, but I didn’t know what I was getting myself into. If it involved me being to share my story for the benefit of others, I was going to take up the opportunity. I wouldn’t have had this vision planted into my mind just to back down from a step towards that direction. Light The Night created such a euphoric feeling for me. Most importantly, it gave me a sense of community in an aspect of my life that I felt most alone in. Without much hesitation, I said, “I’l do it.”
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During the last year of pharmacy school, there is no more classroom work. The learning experience is then shifted to hands-on work in various settings. We referred to these experiences as our “rotations.” I had spent time on hospital floors, community pharmacies like the ones you see on every other corner, and doctor’s clinics. I personally found that final y being able to apply the knowledge I had learned over the past several years to be very rewarding. Being a patient myself made all of those experiences “hit different.”
While up on the hospital floors, I saw the same types of meal trays being served to patients that I had just a year ago. I stepped into patients’ rooms that looked so similar to the rooms I spent weeks at a time in. It made the experience feel that much more real. These were real people, with real families, and real lives. Just as I was, many of those patients were at their worst in the hospital.
I felt the responsibility, no matter how big or small of a role I had, to get them back home. As I told my nurses in the hospital, I had things I liked to do at home. I had people I liked to spend time with.
There was more to me than just the medications I received, the notes written about me, and the lab values. I kept this in mind every time I was given the opportunity to interact with a patient.
There was a particular rotation I had circled from the day I received my schedule. For one of my rotations, I would be working on a hematology/oncology service. Otherwise known as a stem cell transplant unit. That’s right, it was my opportunity to finally be on the other side of the hospital bed working with patients that were going through the exact same treatment as I did.
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When I sat in my recliner after finishing my first battle with cancer, kicked up my legs, and put my hands behind my head knowing the job was finished… that feeling was incredible. As I have already said previously, I wish I could bottle that feeling up for everyone to experience. I knew from that day forward that I had the opportunity to make that happen with my chosen career. I just had to make it happen. I had to put behind my fear of reading into survival rates, current treatment options, and additional background of the disease to help others. This wasn’t about me anymore. It was about making sure that one day, nobody would have to get hurt the way I did.
It was unbelievable how quickly the stem cell transplant rotation arrived. It felt like I had to wait such a long time between when the schedule came out and when I actually had the chance to start the experience. Although, it was well worth the wait. I was fortunate to have the opportunity to work with patients at various steps in the transplant process. The days leading up to the transplant in which we were making sure all medications were scheduled to start on specific days including their chemotherapy, immunosuppressive medications, and anti-infective medications. We followed the patients during their hospital admission to adjust the current drug levels of their immunosuppression and recommend additional anti-infective medications when the patient experienced fevers or other symptoms of infection.
Other patients we followed were ones that already received their transplant and now were coming in and out of the doctor’s office for lab work. I got to see a behind-the-scenes look at what all goes into preparing a patient for a stem cell transplant. It felt surreal. I still felt like a patient during many of the days. I wasn’t used to using the terminology in a way that wasn’t directed towards myself. Instead of celebrating my own day 100, I was saying congratulations to other patients for reaching day 100.
Instead of being asked how I was doing with my medications and how I felt, I was asking the patients those questions.
In a way, it felt as though I was still on both sides of the equation. Even though I now wore a shirt, tie, and a white coat, I had a similar thought process as a patient. But I also had the knowledge 144
and experience that a soon-to-be pharmacist possessed. Being able to integrate both of those sides of patient care is something I took pride in, and something I hope to never let go of.
It wasn’t all good things during my rotation. I was also faced with the harsh realities of patient care. There was a project that I worked on looking at what dosing adjustments were used for a certain medication to treat AML. It involved looking through patients’ electronic medical records to find the data. When I first opened the chart of many patients, a message popped up noting the patient was now
“deceased.” The first time I saw that message, I remember taking a deep breath to try and recollect myself. As I continued looking through other patients, I kept seeing the same message: “Deceased.”
It got to the point that as I was about to pul up a patient's record, I said to myself, “Please stil be alive… please stil be alive.” And when I didn’t see that terrible message pop up on my screen, I was given a huge sigh of relief. I felt an emotional attachment to the project. It hit close to home. At times, maybe even a little too close. After seeing several messages in a row that the patient had passed away, I had to take a five-minute break. I debated asking if I could stop with the project. It’s not that I didn’t want to help, it just real y hurt me to see those messages. But this was what I was signing up for.
All of those articles I used to read down the “rabbit hole” now became my job to do those tasks.
It was insanely difficult. Just as I had to remind myself years ago, every situation is different. No two patients are alike. For myself, those outcomes are beyond my control. For others, I could do everything in my power to prevent that from happening. It was okay for me to feel those emotions. But I needed to find a way to not let it interfere with the job I was trying to do.
At the end of my rotation, I was able to give a comprehensive presentation on stem cell transplantation. It was a neat experience being able to learn more about a process that I had already gone through. I spoke of the history of the transplant, different types, factors in choosing a donor, possible side effects, and medications used throughout the process. It was a perfect wrap-up to an overall great experience.
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I grew a lot during that rotation. When I was a patient lying in the hospital bed, I had dreamt of a day that I would be able to be on the other side of the bed. However, I didn’t know if I had the emotional stability to withstand the bad side of being in that position. The diagnoses, relapses, and poor outcomes. It isn’t easy seeing those kinds of things for anyone. But for someone who had gone through that, knowing it very easily could have been myself in that situation made it sting a bit more.
But now I know I can handle that. With the conclusion of that rotation, it was time to make a big decision for my professional career.
Upon completion of pharmacy school, one of the career paths you could take is to pursue what is called a pharmacy residency. The goal is to obtain a solid foundation in general medicine. You could gain experience in an emergency room, an ICU, a cancer unit, a cardiology floor, and plenty of other options depending on the program. Many hospitals have their own program with a set number of positions each year. After your first year of residency, you could go on to specialize in a certain area of your interest. Areas could include cardiology, infectious disease, emergency medicine, oncology, solid organ transplantation, and more.
I always had an interest in working at a hospital before becoming a patient. From spending hours upon hours as a patient in a hospital, I felt like I became familiar with the workflow. I also took an interest in the pharmacist's role in the care team. After doing some research, my goal was to become a hematology/oncology pharmacist. I want to achieve big things in that specialty. I truly believe my personal experience will give me the drive needed to make important advances in blood cancer.
During my transplant stay when I exhausted all options to make the time go by faster, one day I decided to look into pharmacy residency programs. Knowing my end goal of becoming a hematology/oncology pharmacist, I wanted to work at a cancer center. That way, I would gain experience with different types of cancer all throughout my learning experience. Looking through programs while I was in the hospital felt like such a long shot. I wasn’t even healthy enough to make it through my second year of school but yet I was thinking about the future. I could barely walk around 146
the hospital unit by myself and eat a whole meal. But I was making plans to do a pharmacy residency in a few short years? Part of it sounded unreasonable to me. It was the hope that I could be healthy enough to make it there one day was what kept me going. That felt like my purpose for going through all of that treatment. Suffer now, so that one day, nobody else will have to.
I needed to use the tools I gained through that journey to help me get to where I wanted to be.
To make the largest impact possible, I wanted to find some of the top cancer centers in the country to practice at. The issue was, many of the top cancer centers were out of the Pennsylvania area. It’s not that I wasn’t okay with leaving my home state, but it made me feel like I was getting too far ahead of myself. The other part of it sounded like it was exactly what I needed to do. They say nothing is more powerful than a made-up mind. And during my transplant, I had my mind made up about what I was going to work towards for my career.
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Both the pharmacy residency application process and the activities for the LLS honored hero campaign happened to take place during the same time of year. I submitted my applications and began to be invited to several interviews with various programs. At the same time, I was coordinating how I could be as involved as possible with the Student Visionaries of the Year Campaign. I was asked if I wanted to do a “fireside chat” with those involved in the campaign. I would be able to speak about as much or as little about my experience with cancer as I wanted to. It sounded like the perfect opportunity to take another step in the direction that God has been putting into my mind. Being up on a stage, talking about the many ups and downs of being a cancer patient and survivor.
The talk was going to take place on Zoom, but I wanted to prepare it as if I were talking to a large crowd. I felt anxious, nervous, scared, excited… almost every emotion you could think of. I had never done anything like that before in my life by being put on the spot to talk about the worst moments I have experienced. I didn’t know if I could hold myself together for it all.
As much as one would like to jump right into things at the highest level possible, we know that isn’t the case. No crowds lined up to listen to me speak. Not many knew who I was on that call initially.
There were eleven people in total that joined to listen to me speak. One of which was Madison sitting just outside of the room I was in. I wasn’t sure how to prepare for the talk. Since this was brand new for me, I wrote down on a sheet of paper a few talking points. The rest I was going to let out straight from the heart. There was a short introduction and then the floor was mine.
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I definitely felt nervous in the beginning. Especially when I led off with describing the events leading up to my diagnosis, I had trouble keeping calm. I reminded myself that it was my time to do what I always felt was most important. To share my story. To not be afraid to share every single detail, regardless of what others may think of me. To not be afraid if it provokes those same emotions I once felt during those memories. And so, I spoke about everything.
I owned every single moment. I knew what happened and there was no hiding it. I talked about worrying about making it the next day in life. I talked about all of the insecurities I felt about my appearance and my ability to beat cancer. I talked about the new perspectives I now have. The most beautiful part of it all is when I got to finish and answer questions from those who attended.
Despite how nervous I felt in the beginning, by the end, I was so glad I decided to take the opportunity. It all felt so right. It felt like I had done something meaningful and opened the eyes to those that took the time out of their day to listen. For months, I had pondered the possibility of sharing my experiences for the benefit of others. I know not all cancer survivors are willing to speak about all of their experiences in detail that stil haunt them to this day. But I asked myself, “If not me, then who?” I knew I couldn’t be afraid to step up. That way, maybe other survivors would feel the courage to speak up for themselves as well.
I was blessed with some incredible feedback from the talk. I am so grateful that others chose to spend that moment with me and for LLS to set up the talk. Part of me always wondered if people would ever care to hear about what I would have to say. It was reassuring to hear that I was able to have an impact on those that listened. As long as people would be willing to listen, I will always be willing to step up and speak about it. Shortly after, I even got asked if I was able to speak again for a group of students that was fundraising for the campaign! That right there served as a fantastic example of why you should jump on an opportunity as soon as you are blessed with one. You never know what doors will open next.
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“Be slow. Be stil . This is easy,” was the message I posted on the wall as I began my virtual interviews for residency programs. Having now spoken twice about going through cancer treatment to a group on Zoom, I reminded myself that speaking for an interview is easy compared to that. I wasn’t under any pressure either. That was what I experienced during my relapse. This was just another normal life experience. It was time to showcase the growth I had as a person during the last two years of my life. Having deep and vulnerable conversations with others about everything I had gone through allowed me to feel more comfortable in most settings. During an interview, I felt I was able to articulate my thoughts more effectively than I had years before. I knew how badly I wanted one of those positions, but it was one of those moments in life I had to “zoom in” and not “zoom out.”
By zooming out, I mean looking at the big picture. That would involve thinking about how my career would be affected by my performance in the interview and how it served as the first steppingstone to serve cancer patients as a full-time career of mine. Instead, I chose to “zoom in” to the situation. All it was, was having conversations about myself with other people. Now, which viewpoint sounds more appealing to you?
I had always dreamed of a moment when I would be able to sit down with a patient and encourage them that they could persevere through treatment. If they would still feel down in the dumps, I would ask them,
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“You know why I know you could do this?” Let me show you something cool… You see that PICC line in your arm?”
I would then point to where my scar is from where my PICC line was.
“You see that catheter you have sticking out of your chest?”
I would then pull down the collar of my shirt and show the scar from my Hickman catheter.
The patients I will take care of in the future will have a lot more in common with myself than they could have imagined. There is an old adage in healthcare that you should take care of a patient as if they were a relative of yours. I don’t have to try to pretend that the patient is a relative of mine.
Because I suffered through similar experiences as the patients I will take care of, I would be putting myself back into those scenarios. How would I feel if someone taking care of me was thinking about something else while reviewing my chart? How would I have felt if someone kept recommending new medications to dump into me? If a patient was real y struggling, I wouldn’t try to bring in students for a
“great learning experience.” I would always do what was best for the patient regardless of how inconvenient or difficult it may seem at the time for myself.
No matter how stressful my future job may be, I know that I will never have the bad end of the stick. I will never forget about the times when I was a patient even if I treat millions of patients over the course of my career. Because there is a difference between studying how to do something and living through something. Most healthcare professionals only know of one side of the story. I want to change that narrative.
I set the bar high for where I wanted to begin my pharmacy practices. To make the highest impact on the cancer world, I knew I wanted to be at one of the top cancer hospitals our country had to offer. I hoped to have exposure to the highest number of patients possible, the newest available cancer therapies, and the opportunity to work alongside the greatest minds treating cancer. Whenever I researched online, the same hospital kept appearing in my searches: The University of Texas MD
Anderson Cancer Center. I read into the abundance of clinical trials conducted at the institution and 151
the consistent national recognition for cancer care. The institution has a motto of making cancer history with the goal of ending cancer.
The hospital aligned so closely with my future goals. It felt like it was the right institution to begin my major impact on the cancer community. After having an interview with the program, it reinforced my desire to be a part of that care team. My interview took place in early February, and I had to wait all the way until the middle of March to find out which program I would end up at.
For the residency process, both the programs and the potential candidates each rank their favorite choices. Then, the program and candidate that mutually ranked each other the highest would be matched together. I had my order list planned and ready to go. I then had to exercise patience until Match Day came. Until then, it was a matter of focusing on what I could control and not what I couldn’t control. I had a big event coming up the week before Match Day. An event that I will never forget.
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For the finale of the Student Visionaries of the Year Campaign, there was a celebration held to acknowledge all of the hard work done by LLS and the high school students. Being the honored hero of the year’s campaign, I was asked if I could say a few words.
“Of course!” I said out loud.
In my own thoughts, I questioned myself yet again. I was able to speak on Zoom but even that brought up some deep emotion. The thought of being up on stage talking about those moments in front of people scared me. But it also gave me so much excitement. This was exactly what I was meant to do. I was blessed with a fantastic opportunity, and I had to not back down from it.
The day of the celebration was unbelievable. The team at LLS does an incredible job of making the campaign meaningful for everyone that is involved. I was able to invite my whole family. My mom, dad, brother, and Madison all accompanied me. The people there made me feel like a true hero.
“The students raised money for people like you.”
I couldn’t stop smiling on the day of the event. It was truly an honor to serve as someone worth looking up to. The LLS team I had been working with made me feel like a celebrity that day. There was a small group of high school students that I joined for a video a few weeks back to play at their school to help fundraise for the campaign. Each of them shook my hand to thank me for participating in the video. The fact that I could do something like that for those students meant so much to me. And it 153
meant a great deal to see so many people together in one room that want to see cancer fall, just like I do.
The ceremony began with an introduction of all the campaign teams. Following that, a few videos were played of personal stories about blood cancer. I couldn’t help but to begin to cry. It made me remember yet again how lucky I was. Not everyone makes it out alive. I was one of the lucky ones.
I was given an introduction and then was invited up to the stage.
I still had tears filled in my eyes as I walked towards the stage. Tears in my eyes just like I had as I walked down that long hallway to the Rhodes building after I relapsed. This time, I walked with people on both sides cheering me on with a camera snapping pictures of me as I smiled. I walked up to the podium and life felt so still.
I took those small couple of seconds to take in the moment. I saw everyone in front of me, waiting for me to speak. Like most people, usually I would have some nerves speaking in front of others. But this time, it felt so right being up there. It felt like that was exactly where I was supposed to be in this life. I was told to keep it short, so I had a few lines in mind beforehand. The video made me emotional so I didn’t say everything according to plan. So, I started speaking straight from the heart.
I had a moment in the middle that I thought my emotions were going to take over, and I lost sense of what I was going to say next. But I looked back and saw my family looking back up at me. My Mom, my dad, my brother, and Madison. The same people that were there for me every step of the way. That right there gave me all the strength I needed to finish up the speech. I ended with a favorite line I had once heard and put my own twist on it.
“A healthy man has 100 wishes, but a sick man has just one. I’m blessed to say I have gotten my one wish. But now, it’s time to make sure other blood cancer patients get that one wish too.”
Every day, I get caught up daydreaming about my revenge on cancer. I can’t wait for the day I truly fight back by giving my due diligence to make sure cancer never wakes up again, for anybody.
For all of the families that have been ripped apart and friends that will never be seen again due to the 154
ill will of cancer, I will never back down. I will push each day for all of the caregivers that were pushed to the brink trying to balance care of their loved one while still having their own responsibilities. I will stand strong for all of the survivors that carry that heavy burden of a potential relapse.
When I was diagnosed with cancer, all of the prayers from those around me were directed towards me. But now, I say we had this backwards all along. If I get into a fight with cancer, you better pray for the cancer.
I need to possess that same drive I had during my own recovery but now use it towards the recovery and health of others.
I will need to attack with consistency. Recovering after my transplant taught me the importance of showing up every day and bringing a strong consistent effort.
I will need to be persistent. Suffering from the side effects of chemotherapy while trying to live my own life and still be a pharmacy student taught me that you must be able to perform even when you don’t feel you are at your best.
Finally, no matter how frustrated or hopeless I become in this journey, I will hold onto my gratitude. I will never forget how many prayers I read and tears that rolled down my face for a second chance at the life I live now. I now understand how beautiful this life is and I will never take it for granted again. That same feeling drives the point home further that I must live life to the fullest and serve a purpose with my limited time on this Earth. I have a vision for what I should do with my life, but I don’t know how to get there. I have no idea how in the world I will ever achieve what all I have the vision for.
The destination is not what's important, it's the journey I will need to take to get there. Thanks to the journey you all are familiar with now, I have a feeling this next one will not be much different. After all,
“It’s just four walls.”
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Every seat in the building is filled. My family, friends, fellow survivors, and the many others that have been affected by cancer have gathered together. Music plays and the introduction begins. “Please welcome to the stage, a two-time survivor of acute myeloid leukemia, author of Four Walls, and current hematology-oncology pharmacist leading breakthrough research, Ryan Scanlan!”
The light shines on me as I walk onto the stage. In attendance are all of those that supported me through my most difficult times. Even the healthcare workers that took such amazing care of me in the hospital. I take time to acknowledge everyone who has supported me and allowed me to make it to where I was. With tears in my eyes, I reiterate the point that I couldn't have done it without the strong network behind me every step of the way. I talk about my experiences in front of everyone. The good, the bad, and the ugly. We laugh together, we cry together, but we rejoice in the steps we have taken to end cancer, together. Before I decide to head off stage, I give one last excerpt to the crowd.
“I’ve spent a lot of days in a hospital bed. I had many nights that I couldn’t sleep. Al I could think about was not wanting to die. All I could think about is wanting to live life again. To all of my cancer survivors out there, even though our treatment days are behind us, it never truly feels like it is over, does it?
Each day I wake up, I am constantly reminded of the tragic experiences of my past. I still have nightmares about relapsing. I still have the scars from all of the beatings my body took. Each morning, I relive those moments.
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But most importantly, each day I wake up, I am constantly reminded of one thing. Despite everything I had been through, I won. And each day I go out and continue to chase my dreams, cancer continues to lose. I don’t plan on stopping until cancer has lost for good.
You see, sometimes, you have to go through something terrible to appreciate how good you have it now. Sometimes you have to lose all hope to find out how strong you really are. Sometimes you have to be faced with death, to understand what it truly means to live.
So when you wake up in the morning and it feels like life is beating you down, whether it would be your finances, your health, losing a job, losing a loved one, or losing all hope in what you aspire to be… just remember one thing. The fact that you are still here today, whatever is trying to take you down… is losing. When you feel stuck, take it from me. You are just sitting within the four walls around you.”
The crowd cheers as I walk back behind the stage. I find a room and take a moment by myself.
I close my eyes, and I see him again. It was me on that same hospital bed. Bald head. Skin and bones.
IV lines sticking out of his arm and chest. But, this time, he didn't look at me in disappointment with defeat in his eyes. He looked back at me with glistening eyes and a big smile on his face.
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I first began writing these words not with the intent of writing a book, but as therapy for myself.
I was constantly reflecting upon my troubled past with cancer. Many of the thoughts that passed through my mind were reminiscent of the defining moments I experienced. They were the lessons I had learned and I wanted to share with anyone that was willing to listen. The fears and anxieties lingered over me for many months. I had so much to say but I didn’t know who to share it with. As said in the Diary of Anne Frank, she wrote, “Paper has more patience than people.” And so, I wrote. Thought by thought. Journal entry by journal entry. And slowly, I started telling myself my own story with every detail.
I now truly appreciate the frustration and rigor that comes with a creative project. Countless times I had thoughts that sounded incredible in my mind but came out incredibly dull on paper. I had days where I sat down to write for twenty to thirty minutes and produced only a single paragraph just to come to the consensus to highlight the entire product and press delete. Almost a year after I began writing, I had serious considerations of shooting the project down. With numerous days in a row writing
“journal” on my to-do list only to leave the task unchecked, I made a confession to Madison.
“I don’t know what it is. This doesn’t mean as much to me as it used to. The book isn’t important for me to work on anymore.”
For almost three months, I didn’t write any content.
As the author James Clear said, “To write a great book, you must first become the book.” For a long time, I wasn’t applying those same lessons, beliefs, and concepts that I was once writing about 158
in my own life. I wasn’t being true to my own words. Like any chal enge, this book you hold in your hands right now had its own four walls.
Accepting the challenge to write my own book was the first wall. I felt energized as I typed away my first few pages. As the days went by and the ideas stopped flowing, that urge to give up crept into my mind. Remembering why I started to write this book in the first place gave me that extra boost to keep writing to push through that second wall. Sharing my first chapters with close friends of mine and hearing their feedback further inspired me to keep producing more content.
As the months continued to fly by, I grew frustrated with the amount of time it was taking to come to a conclusion. Just like my cancer treatments, I underestimated how lengthy the process would be. I underestimated the rigor and the discouragement I would feel along the way. I had moments when I felt I was writing beautiful and well-thought paragraphs. And other moments where my words felt forced and ingenuine.
I remembered the importance of being on a schedule that I learned during my recovery. It almost felt like a chore after a full day of work, school, exercising or whatever it may have been, to come home and try to be creative. I knew I had to knock out the “hard thing” first in the morning. So, the first assignment I did each morning was to wake up, sit in my recliner, and write away. From the hours of five to six in the morning, I hit a flow state in my creativity.
That strategy worked temporarily. I felt that I was making tremendous strides. But even then, I still started to hit a third wall. At this time, we need to think back and readjust. Our methods of operation may not always be applicable to the situation as it continues to grow and evolve. My applications for residency came to the forefront and I no longer worked on my book in the morning like I used to. My clinical rotations from pharmacy school became more cumbersome and time-consuming. Instead of finding a way to readjust and find a new plan, I decided to stop writing for those three months.
Motivation comes and goes. Being able to sit down and journal even when I didn’t feel like it was a constant battle. There will always be a whirlwind of responsibilities, deadlines, and chores being 159
added to the picture. But don’t forget to focus on what is truly important to you. I let all of the new responsibilities push writing my book to the bottom of the priority list. It is okay to rearrange priorities, but it is not okay to completely abandon something that is unfinished.
I had to reflect upon the consistency it took for me to overcome my cancer journey and apply that to my writing. By being consistently good at writing each day instead of being occasionally great by writing content once every few weeks. Just as I took my walks around the hospital floor step by step, I had to take this book paragraph by paragraph.
I hit the third wall many times during this project before being able to knock it down. I tried many different methods to optimize my writing. Working early in the morning. Working late at night. Listening to a calm melody while working. Sitting in pure silence to close my eyes and revisit the images of my past. It took constant fine-tuning and starting back from square one to find what worked best for me during that period.
It was a journey to make it to the fourth and final wall. I never gave myself credit for the work I had done until I decided to combine all of my chapters together into a single document. Once I saw all of those pieces come together, it finally felt like I had a book coming to life. All of those early mornings and late nights writing were showing their results. All of the eliminated paragraphs, edits, and reedits fell into place.
Whether ten people read this book or ten million, that is not what will make me proud. I am proud that I was able to provide a full raw recollection of my two battles with acute myeloid leukemia. I hope that from reading this my family and friends will be able to conceptualize what my struggles really looked like. For my fellow cancer survivors to know that they don’t walk alone in their troublesome path.
For the healthcare professionals to take a look into the eyes of someone who experienced both sides of the hospital bed. Lastly, for any of those that may relate to the many emotions and hardship that comes with overcoming a difficult time in their lives.
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I accepted the challenge to generate as much of an impact on the cancer world while I am still living and breathing. So here I am now, blessed to be working at the number one cancer center in the country at the University of Texas MD Anderson Cancer Center. I hold onto my memories as a patient to bring me gratitude, perseverance, and consistency in order to become the best practitioner I could possibly be for these patients. The first wall for my vision is down. Just three more to go.
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Right before being transferred to Philadelphia for treatment of newly diagnosed leukemia
Total body rash experienced during my first hospitalization
Lunch date with Madison during consolidation treatment
Eating my one small meal for the day during my transplant stay
I was in rough shape when the radiation and chemotherapy side effects started to take effect
Madison and I in our fancy outfits when she visited me during my transplant stay
Swol en face from vomiting just one week after being in the hospital for my transplant
The day I realized the strength was always inside of me, I just had to be willing to go find it.
“I am the master of my fate. I am the captain of my soul.”
Surprise party my friends and family threw for me to celebrate one-year post-transplant From left to right: My brother Eric, my mom, and dad
Sticker placed on the wall of my apartment building – a reminder that everything in life is playing out the way it is supposed to be
First time speaking about my experiences on camera
Leukemia & Lymphoma Society Student Visionaries of the Year Campaign promotional video The first of many times I wil be speaking in-person about my experiences Greater Philadelphia Area Student Visionaries of the Year Campaign Grand Finale
Visited “the bench” I used to stare at from the hospital window
Graduation Day – taken exactly two years after the photo of myself with black and blue eyes in the hospital bed
Ryan Scanlan, PharmD
PGY1 Pharmacy Resident – University of Texas MD Anderson Cancer Center
“One wall is down… just three more to go.”
Please consider joining the Be the Match registry to help save lives just like mine using the QR Code below:
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