This story could not have been accomplished without the endless support of my family, friends, and communities back home. To everyone who has supported my family and I
through the “Scan Can & Scan Will” Campaign,
We did it.
When I was having difficulty coping with being in the hospital for a long period of time during my transplant stay, the doctor said something that resonated with me.
“I know it is tough being in here. It’s just four walls.”
I was trapped in that room all day long. It was just me and the four walls around me. I felt stuck.
You only could stare at the wall in front of you for so long before you start losing your mind. The more I thought about the “four wal s,” the more I realized I could apply that to many aspects of my life today.
In life, we talk ourselves out of stepping outside of our comfort zone. When we are faced with a rough patch in our lives, we say, “I could never make it out from this.” We tend to shrink away from life’s chal enges. We want to stay where we are in life because we are afraid to take risks. We are afraid of putting ourselves out there and failing. We lock ourselves in a room surrounded by four walls.
To break out of our comfort zone to achieve whatever we want most out of life or power through a difficult circumstance, we must break down those four walls.
Getting down the first wall is commitment. We have to commit to ourselves that we will make a change. It is one thing to visualize in your mind what you want. But it is a whole other animal to speak it into existence and start taking steps to make it happen. It is difficult to accept a new challenge. Why do you think it feels so nice just sitting in your comfort zone? You don’t want to move. You feel content where you are. When I used to be a runner, one thing we always used to say was, “The hardest step of a run is the first step out of your door.” You knew you had to get some miles in. You knew you needed to train. But did you want to actually go out and do it instead of just relaxing on the couch?
Make a promise to yourself and commit to it. Knock down that first wall.
I
The second wall is when you first get the ball rolling and you are progressing through your plan.
The bad news for you is, you’ve realized this isn’t going to be easy. The second wall is that first time you feel like quitting. Every person in life has felt like quitting before. When you think of your role models in life, oftentimes, you are seeing the finished product of years’ worth of sacrifice and discipline. They didn’t always have it this good in life. They had to make it through some difficult times to get where they are now. Have you ever heard of someone who always quits on themselves when times get tough?
Of course. Many people in life do that. Those are the exact people that everyone forgets about. Life isn’t meant to be easy so don’t make it that way. The funny thing about the human mind is that when we get uncomfortable and realize we are really going to have to work to accomplish something, we already make up excuses in our mind as to why we couldn’t achieve it!
“Yeah, I couldn’t finish that workout today because I didn’t get much sleep last night.”
“I couldn’t get that degree I’ve been wanting. I realized it’s just too much school to get there.”
“I gave up on starting that business I have always dreamed of. I have too much on my plate right now.”
Maybe some of those quotes sound like something you have said before, or maybe they don’t.
The point is, you will be challenged. You will be tempted to quit. But if you can remember why you started in the first place and remind yourself that the pain is temporary, you can persevere. Once that second wall falls down, you feel a breath of fresh air. You get a second wind and suddenly, your motivation is back. This feels easy again! You are starting to notice some progress and it feels as if you conquered your goal. Oh, but you forgot one thing, it can’t always be this easy.
The third wall is what I consider the toughest wall to break down. It is when you are faced with adversity again even after thinking your times of discomfort have ended. The burst of energy has run out and once again you are searching deep down within yourself for more power to give. The same plan of attack that worked last time isn’t going so well anymore. Those same excuses start popping into your head again. If you could find a way to stay consistent with yourself and turn off the excuses II
you are coming up with in your head, that third wall will fall. It is better to be consistently good than occasionally great.
The fourth wall is the easiest wall to get down. You have already overcome multiple obstacles throughout your journey that made you question your own ability, but you kept going anyway. You are so close to winning and you could feel it. There is no way you would ever consider quitting now! Look at how close you are! The fourth wall feels like a little “poke” to knock it down compared to the others.
When people are astounded as to how you were able to achieve that goal of yours, you will say to them,
“Of course I did. Have you seen what I have been through to get here?”
“Have you seen what I did every single day regardless of how I felt to get here?”
In most cases, they probably didn’t. Do you know why? Most people see that end result. Most people don’t see the pain and hardship that was required to get there. Now, all of a sudden, you are the person people are looking up to. You are the person people are trying to emulate. You are the person they think of when they are trying to knock down that first wall for themselves. So, I ask you, is achieving your dreams something that seems unattainable? Does getting out of this rough patch of life seem impossible? Because to me, it sounds like a matter of breaking out of that room to have locked yourself in. Remember, it’s just four walls.
III
At the age of twenty-two years old, I was diagnosed with acute myeloid leukemia (AML). It was a devastating moment in my life. Having no health issues leading up to that point had me believing it wasn’t real. In a matter of minutes, my life was turned upside down. The entire life that I was expecting to live suddenly changed to the life that I was hoping to live long enough to experience. Up until that point in my life, I had taken many things for granted. Life experiences, time with family, friendship, love, and my good health. Unfortunately, some of the most beautiful aspects of life are often overlooked.
Over the next five months, I went through five cycles of chemotherapy. My first hospital admission was a four-week-long hospital stay followed by four additional admissions each of which were six days long. In between each cycle were home nursing visits, doctor’s appointments, and even more hospital admissions to treat possible life-threatening infections.
After I had finished cancer treatment for the first time, it was the most proud I had ever been of myself. I had the euphoric feeling of having a life to live again. I learned to appreciate those tiny beauties of life and realized I had so much to be thankful for. But after just two months of finishing my first battle with cancer, I experienced a relapse of my disease. Hearing, “It looks like the leukemia is coming back,”
from my doctor is burned deeply into my mind. I will never forget that day, because I truly thought I was going to die after hearing those words.
I found myself back in the hospital for another month-long hospital stay. The life I thought I had escaped violently pulled me back in. The hopes of traditional chemotherapy ridding the cancer from my body was no longer a possibility. Now, the best way for my chance at a cure was a stem cell transplant.
IV
The reason why I am here and able to write this book today is because of someone else’s blood. Al of the blood in my body is those of a stranger’s. The transplant process was difficult and rigorous, but it ultimately shaped me into the man I am today. I am not here to just tell you about all of the new perspectives, ideas, and thoughts that have grown on me through my battles with cancer. To truly understand how strenuous, anxiety-producing, and taxing it is to be a cancer patient, I must dive into the whole story. Not just the positives that people often see at the end of the road. It is time for you all to understand what happened behind those four walls.
V
VI
You could argue that for the first twenty-two years of my life, I lived a perfect life. I was blessed with a loving family. My parents always made sure to attend every sporting event or celebration I was involved in. They supported me in every way possible to provide me with anything I could have needed.
My older brother, Eric, did his best to bear with me as I tried to copy every single thing he did growing up. Whether it would be a new hairstyle, a new sport, or a new video game, I had to try and be just like him.
I always had a great group of friends to hang out with. Whether it would be childhood, middle school, high school, or college. Many of the friends I made during middle school are still my closest friends to this day. The friends I have made during my college years I feel as if I have known them my whole life. I am so thankful for all of the memories I have been able to create thanks to all the amazing people I have met throughout my life.
I started dating my high school sweetheart, Madison, during my junior year of high school. We had the opportunity to grow up together. It has been so much fun having one another as we venture through different stages of life together. She has grown to be such a strong young woman that myself, my family, and my friends all love so much.
I had so much going right for me in life, but I wasn’t able to recognize that quite yet. I was able to transfer schools when I wanted to in middle school. I was able to choose the sports I wanted to be involved in and be able to excel at them. I got accepted into the college I wanted to attend. My parents VII
have done anything I could have ever asked of them and more. With the life I had, I almost expected everything to go my way. And if it didn’t turn out that way, it had to be someone else’s fault.
Despite everything I had, at times I came off as ungrateful. I didn’t truly value the many amazing relationships I had with those around me. Like many people in their younger years, I constantly compared myself to others. I judged my success off of how I looked next to others. I was deep into the social media world. I prided myself on the life I portrayed online and not how my life actually was. Far too often, I wasn’t in the present moment. I daydreamed about previous memories in life, whether good or bad, and thought about what kind of future I would build. So much of what I wanted to create in my future was for myself. The thought of helping others for a higher purpose was far beyond my perspective of life.
I am not particularly proud of the person I used to be. It’s not that I was a bad person, but I had plenty of room for growth. I focused on many nonessential things in life and it reflected back on what I thought about all day. Being blessed with the life I had, it’s easy to get too acquainted with that lifestyle.
Getting what you want and not having to truly struggle for much. Although, it is a double-edged sword.
Because of that easy life I had, it made other normal chal enges of life feel “not so easy.” At the time, I was a distance runner almost my whole life. Naturally, I was pretty quick from a young age. But once I got into my high school years and the competition started to improve itself, I started to fall behind. And what did I do to handle that? I quit prior to my senior year. I grew so accustomed to having everything go my way, that when it didn’t, I couldn’t accept it nor was I wil ing to do anything to change that outcome. It led to those negative aspects of myself that I wasn’t able to confront at the time. If I wasn’t able to confront myself, for myself… then life was going to have to do it for me.
I had just finished my first year of pharmacy school. The COVID-19 pandemic recently surged throughout the country causing a massive change in everyone’s lifestyle. My only plan for the summer was to work two jobs and make as much money as I could. One job which I have been at for years was at a grocery store pharmacy and my new job working in a hospital. Three days a week at one place, VIII
and three days a week at the other. Might as well, right? It’s not like many places were open to be out with other people due to the pandemic anyway.
One night, I woke up in the middle of my sleep to the harshest body chills I have ever experienced. My whole bed shook uncontrollably as I shivered for hours in the night. With it being one of the first few months of the pandemic, I immediately thought I caught COVID. But when I went to get tested, the results came back negative. I found that both relieving and concerning at the same time. I was glad I didn’t have COVID, but I could not think of what could have caused the chil s that night. I had more questions than answers at that point.
Over the next several days, I continued to feel feverish and generally tired. I decided to call off work one day to stay home and rest. I remember lying in my bed and staring at a water bottle across the room. I desperately needed to hydrate. But for some reason, I felt like I couldn’t get my body to get up and move. What should have been a quick walk to get a drink became a ten-to-fifteen-minute operation.
The elevated temperatures I was experiencing began to fade away. But I stil didn’t feel like myself. As I sat outside with one of my roommates at the time, I said to him,
“I don't know what it is, but my body can’t maintain a steady temperature right now.” Even with the sun beating on me, I didn’t feel warm. As soon as it became cloudy or a gust of wind blew by, I had goosebumps on my skin. It wasn’t making sense to me.
I came home from work one day and walked up the staircase to get to my room. I sat down and took a moment to realize how heavily my heart was beating in my chest. Oh, come on. I can’t be that out of shape that a staircase would do this to me. Normally, I was an active person. I would go to the gym usual y five times per week. With the gyms being closed due to the pandemic, I wasn’t working out as often. But the fact that I felt out of breath from a staircase was alarming to me.
The last straw for me came when I was exercising in my room one day. As I was lifting my right arm, I noticed a mark on my bicep. At first glance, it looked like it could have been a bruise. But it IX
looked very similar to a type of mark that I had learned about in school called petechiae. Petechiae forms when there are inadequate amounts of platelets in the body which could result in minor bleeding under the skin. The mark was a bunch of brownish-purple dots clustered together. I later blew my nose into a tissue only to see blood come out. Even then, for some reason, I still felt hesitant to go see a doctor again. I was a healthy twenty-two-year-old guy. There couldn’t have been anything dangerous going on with me, I thought to myself. Madison persuaded me otherwise that I should try to get everything straightened out and see a doctor one more time.
I arrived at the doctor’s office. I explained about my previous fevers, feeling out of breath more than usual, blood in my tissue, and now the petechiae mark on my arm. As I spoke about my symptoms, the doctor seemed to act in a peculiar way. Any input on what I thought it could be she returned with,
“No, I don’t think that could be it.” She decided to do one more COVID test because there was stil a chance of false negatives and a blood test along with it. Once again, I left the doctor’s office with no answers, only more questions.
The next day, Madison and I decided to take a trip home to see family and friends since I had a few days scheduled off from work. The petechiae rash was now visible on my neck and my fatigue engulfed my entire body. I felt worn out to the point that I pulled over to the side of the road and asked Madison to drive the rest of the way home.
For one of the first times since the pandemic first began, a bunch of my friends got together in town. I hadn't seen any of them in months, and I was hoping to spend time with them. But I couldn’t get over how drained I felt. I decided to drop Madison off to be with everyone and I would stay at home to get one more good night’s rest. Thinking that hopefully, I would wake up feeling brand new.
X
I woke up that morning just like anyone else would. I came out to the kitchen, had some breakfast, and began thinking about what my plan for the day was going to be. I received a message on my phone from the patient portal. The message read, “Give me a call as soon as you can and go to the nearest emergency room.” I couldn’t believe the message. I was in denial that something serious was happening to me. I went into my room and called the doctor. He explained to me that there were some alarming results from my blood tests drawn two days ago.
My bone marrow was unable to produce healthy cells which resulted in a decreased platelet count, hemoglobin level, and an elevated white blood cell count due to a large number of immature cells being released into my bloodstream. After his explanation, he said, “And I hate to be the bearer of bad news, but this is typically what we see in our leukemia patients.”
I had no response. I was in utter disbelief. I wasn’t very knowledgeable about leukemia at the time, but I knew it was a form of cancer. This couldn’t be right. I opened my bedroom door to go back into the kitchen. Madison and my dad were both waiting for me. My eyes began to tear up and I let them both know that we had to go to the emergency room right away. I gave Madison a hug goodbye and followed my dad up to our garage. Before I hopped in the car, my dad turned around and gave me a hug. He knew that I was scared, and I knew he was too.
It was a quick drive over to the hospital. I approached the admissions desk where the woman asked why I was coming in today. I was too shaken up to answer clearly. I muttered, “The doctor told me to come here. He called to make sure the hospital was aware I was coming in.” Shortly after, I was taken back to a bed where my complete blood count was drawn one more time. The nurses tried their 1
best to comfort me. They said to me that it doesn’t always mean leukemia and that it could be something else. I hung on to that last bit of hope so tightly.
After about twenty to thirty minutes from the lab draw, they decided to move me into an isolated room which began to worry me even more. My mom who works at that same hospital came down to see how I was doing. She let me know that both my brother and Madison were on their way as well.
To top it off, the doctor in the emergency room informed me that I was going to be transferred to The Hospital of the University of Pennsylvania. “They have world-class doctors there treating leukemia,” is what he told me. It didn’t make me feel any better. It only confirmed that this nightmare was becoming a reality.
I said my goodbyes to my dad, my brother, and Madison. I watched as they stood helplessly as I was being loaded onto the ambulance. I laid in the back of the ambulance staring out of the back window wondering what was going to happen next. On the ride down to Philadelphia, I received a few texts from friends asking what I was up to that day. I let them know about the situation but didn’t mention anything about the leukemia yet.
After a long two-hour drive, we finally arrived at the hospital. By this time, it was already close to 9 PM. I was admitted to the seventh floor of the Rhodes building. Since it was so late in the day, there wasn’t a primary team to make their rounds on me. One physician had stopped in to get an initial report. Due to COVID precautions at the time, visitors were not allowed to stay overnight with patients.
So, my mom left the hospital close to midnight. It was a very tough night. Saying goodbye to my mom left me all alone. I didn’t know anyone on the hospital floor, and I had received the worst news of my life. I didn’t sleep a single minute that night. I stayed up with my mind racing the whole time.
The following day, the medical team rounded on me and I had to tell my story again to a group of five people. One thing to note, man, they have way too many people come into a patient’s room when they stop in to see you. The doctor informed me that they had to conduct a procedure called a bone marrow biopsy to get a proper diagnosis. I was told that they would numb the area, my pelvic 2
bone, and then draw a sample of my bone marrow for testing. The needle actually goes into the inner part of the bone called the bone marrow during the procedure. Bone marrow is responsible for the formation of platelets (which help us stop bleeding), red blood cells (which transport oxygen around our body), and white blood cells (which fight infections). Once the area is numbed using lidocaine, a syringe is used to draw some of the fluid, or aspirate, to be used for testing. A piece of the bone marrow is also extracted from the hip to be used for testing purposes as well.
The procedure wasn’t supposed to be painful, but let’s just say the doctor who performed that initial bone marrow biopsy was shy with the lidocaine. And for that reason, I will always remember that first biopsy. I was in agony as the needle was inserted deep inside my bone. I winced in pain as my mom tried to comfort me from the bedside. The reality of my diagnosis was getting about as real as it could get.
The results of the biopsy took several days to generate. Due to the need for immediate action, both the team and I were anxiously waiting to hear about the results. The team previously thought it was a rare type of leukemia that would only require oral chemotherapy. I was thrilled to hear that I wouldn’t require any intravenous (IV) chemotherapy and so was the team. The team was so thrilled that they flipped the lights on in my room at 3 AM to tell me the news. Good morning to you too, doc.
However, a day or two later, I was told that they were incorrect about the initial diagnosis. The correct diagnosis turned out to be acute myeloid leukemia. This type of leukemia would require traditional IV chemotherapy. Several practitioners had told me that the genetic make-up of the leukemia was “the good leukemia.” But, of course, they assured me that no leukemia is truly “good.”
I remember the moment when they confirmed I had AML. There were several practitioners in the room and the attending physician had told me the symptoms I was experiencing were due to the fact that I had leukemia. After she let out that sentence, it was followed by a long pause. I did everything in my power to not cry in front of everyone. I stared down at my feet and just hoped they would leave the room shortly after. When they eventually left, the tears started flowing again. I admire how the team 3
was able to stay strong in front of me while I had some of the worst thoughts going through my mind at that moment. Receiving a cancer diagnosis is extremely difficult, but being tasked to deliver that message to a family must be a heavy burden as well.
After a few hours, one of the pharmacists on the floor came into my room to educate me on the chemotherapy I was about to receive. Ironically, I started interning at the very hospital I was now being treated in two months before. We both recognized each other. Just days ago, I looked at him as a colleague and now I looked at him as a savior as I laid in that hospital bed searching for hope. I was told I was going to receive what is called the “7+3” regimen. 7 symbolizes the number of days I would receive one drug called cytarabine. 3 symbolizes the number of days I would receive another drug called daunorubicin. In combination with these two agents, I would also receive a medication called gemtuzumab.
The pharmacist had explained to me what to expect from these medications. Mouth sores, hair loss, upset stomach, low blood counts, and nausea/vomiting/diarrhea were some of the most notable.
Daunorubicin was the one chemotherapy drug that would mostly be responsible for my hair loss. He said my hair may come out in clumps, I could see hair come out while I showered, or I could see hair on my pillows when I woke up in the morning. The hair loss wouldn’t be instant. It would occur within the first week or two after the treatment. Daunorubicin also had a side effect of turning bodily fluids, like sweat or urine, to a red/orange color. The pharmacist did a great job of explaining everything for me. It was a lot of information that made me nervous for the treatment, but it was comforting that I knew what to expect.
It is unbelievable how quickly everything in your life could change. I was just an ordinary guy when all of a sudden, I was put in a battle for my life. When I first got wheeled onto the hospital floor, on the wall was written “Cancer Unit.” That’s when it real y hit me that it was about to get real. The words sickness, cancer, chemotherapy, leukemia, and survival were constantly used around me. I was at a loss for words. I was blessed to be healthy all of my life until that diagnosis. I never even had to 4
be admitted to a hospital before. How could this happen to me? Was there something I had done wrong? So many questions flowed through my head at all hours of the day.
I cried so much those first few days. I was terrified of what was going to happen to me. One of my first few nights before I began chemotherapy, I was sitting in the bathroom late at night on the toilet.
I was having diarrhea, I was vomiting, and I had a supplemental oxygen tank going into my nose. Tears rolled down my cheeks as I pleaded to God to get me out of there. To tell you the truth, if the team would have told me the next day that what I had was going to kill me, I would have believed them.
After a while, I realized crying wouldn’t do me any good. One of the most important conversations I had through my journey was one that I had with my mom during one of my first few days in the hospital. I told her, “I just want you to know that I don’t feel like a victim in this situation. I am not mad at anyone or anything. I know that bad things happen to people all the time. It just sucks that this time it’s me.”
I had to establish with myself that I wasn’t a victim. It took me a few days to realize that, but it greatly improved my attitude towards my diagnosis. At first, I was heartbroken, confused, and scared.
I thought to myself, “Why would God do this to me?” As they say, life is 10% what happens to us and 90% how we react to it. It was my time to react. The moments of time throughout my journey when I fell back into the victim’s mentality were the ones where I became “stuck” and didn’t move forward. I shrunk down to the challenges in front of me instead of digging deep to find a way to persevere. A quote that has stuck with me when thinking about difficult moments was said by Martin Luther King Jr.
He said, “The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy.”
I had lived a very comfortable and easy-going life for 22 years. I knew where I stood in my many moments of comfort and convenience. But where would I stand in my times of challenge and controversy?
5
Before I could receive the chemotherapy, I had to get a peripherally inserted central catheter (PICC) line put in place. It is similar to an IV line, but it stays in place for much longer. The PICC line was placed into my right bicep. The reason why the PICC line needed to be placed is because giving certain chemotherapies directly through a vein could lead to a dangerous injury to the surrounding tissues. The catheter was maneuvered through my bicep and the tip went all the way to the major vein of my heart. This way, the medication was immediately pumped throughout my body so my veins did not have to carry the medication to my heart and risk injuring the surrounding tissue.
It wasn’t a painful procedure, but having a catheter in my arm with me the whole time took some getting used to. The catheter was protected in a bandage to help prevent infections at the site, but I was able to see the catheter sticking out from my arm with dried blood around it from the procedure. I was afraid to move my arm with it in place. I rested my arm on my body as if it was broken. One of the nurses had to physically move my arm for me because I was too scared that I would hurt myself if I bent my arm too much. I am right-handed so it made doing anything on my own difficult. I was under the impression that the PICC line was put in place temporarily, but it turned out to be stuck with me much longer than I had anticipated.
I finally started to receive the chemotherapy infusions. It made me feel awful. I vomited the first few days and lost my appetite. The one thing that cracked me up about chemotherapy administration is that when the nurses handled the chemotherapy drugs, they had to wear goggles, a large gown, and 6
dispose of all parts of the chemotherapy bag in a special bin. It comes to show how toxic chemotherapy is for your body but yet I was so sick that I needed those toxins injected into my body to help save my life.
My blood cell counts dropped very low. I required both red blood cell and platelet transfusions almost every other day to try to keep my levels in a sustainable range. Having low hemoglobin made me feel lightheaded whenever I stood up or tried to move around. There were some days that whenever I wanted to move from the bed, I had to call a nurse in to help me walk around. At 22 years old, it was demoralizing to rely on someone else to help me walk.
I remember one day I tried walking around the hospital floor when the chemotherapy started to take its toll on me. One nurse walked with me right by my side and another nurse walked behind me with a wheelchair in case I needed to take a break. I made it not even halfway across the hospital floor before I felt too lightheaded and had to flop down into the wheelchair. As I got pushed back in a wheelchair to my bed, I felt physically and mentally defeated.
Sometimes, I thought from the nurses’ perspective. Many of the nurses were around my age.
Most were in their twenties which gave me a sense of relief. It almost felt like I had friends taking care of me while I was in the hospital. But could you imagine having to walk someone around who is almost the same age as you? I was just a year younger than one of the nurses who was taking care of me. I always hoped and wondered if those nurses realized how lucky they were. In the perfect world, I would be just like them. Healthy, moving around by myself, and have so much to look forward to on any given day. Did they realize this could easily have been them? It was so difficult seeing them live their life while I suffered in that hospital bed. Although, it gave me something to strive for. A life back on my own again is all I could think about.
The thought of losing my hair worried me. It is one of the most classic side effects from cancer treatment, but I had a thread of hope that I would be the one patient that somehow kept all of his hair.
As I had mentioned before, the hair loss would take a week or two to take effect. After about a week 7
on the dot, I woke up in the morning with hair all over my pillow. It was frightening to see at first, but it was also something I was forewarned about by the pharmacist. During that day, I scratched my head and strands of hair just fell out. I even tried pul ing some hair and it came right out. I couldn’t bear to wait for all of my hair to slowly fall out, so I asked if someone could shave my head for me. Remember, this was around the time when COVID had first started. I didn’t have a haircut for quite some time, so I was due for one. But this wasn’t the type of fresh cut I was accustomed to.
When I first saw myself in the mirror with my bald head, a part of me on the inside had died. I looked like your stereotypical “sick cancer kid.” My lack of appetite began to show on my physique. I used to weigh about 185 pounds before my diagnosis. When I was first weighed in the hospital, I dropped all the way down to 160 pounds without even knowing it. I could tell I slimmed down a bit from not weightlifting anymore due to gyms being closed from the pandemic, but I had no idea I lost 25
pounds during that time. I was blown away when I saw “160 lbs.” on the scale. A lesson to be learned, always be aware of how much you weigh. Unexplained weight loss could be a sign of various illnesses.
If you don’t already have one, get yourself a scale.
During that hospital stay, I dropped all the way down to about 140 pounds. I had never been a
“bigger guy” so I needed all the weight I had on me. Seeing myself about 40 pounds lighter than my normal healthy weight was tough to see. I was afraid to even look at myself in the mirror. I couldn’t accept that cancer was beating me. I asked myself, “Is this really who I am now?” I would have given anything to revert back to how my life used to be. I needed to find strength. I needed to find a sense of hope. I remember saying to the rounding team for days, “Please, just say something good today.” Al I could get from them was, “Just hang in there.”
Since my immune system was severely compromised from both the active leukemia in my body and the chemotherapy treatment, I had to receive antibiotics around the clock to protect me from any bacterial infections in the hospital. After a few days of being on antibiotics, I started to feel an itch on my neck and chest area. I didn’t think anything of it at first. When one of the nursing assistants came 8
in to check my vital signs at night, he noticed that I had hives on my face and alerted the team. Once the lights were turned on, it was clear I was starting to develop a rash. One of the antibiotics I was receiving triggered a reaction on my skin and I was beginning to break out all over my body. Over the next few days, the rash had spread from the top of my head down to my toes. Since my platelet count was low, I actually bled into my rash. The result was my whole entire body looking like I got burned. I love showing people the pictures of myself with the rash and seeing their reactions. I almost looked unrecognizable.
To help my skin, I had to apply a thick ointment in the hospital multiple times a day. It was greasy and disgusting to have on my skin. I remember wearing a loose light grey t-shirt in the hospital but the ointment on my body turned it to a dark grey color from sticking to my skin. One of the days I was walking around on the floor one of the nurses said to me, “Hey, it looks like you’re wet right now.”
I had to constantly pull my shirt to prevent it from sticking to the ointment. Once the rash started to fade, it looked like I had a pretty mean sunburn. You know what happens when you get a bad sunburn? You’ve guessed it. My whole entire layer of skin began to peel off. Anything and everything from the skin surrounding my nails to the skin behind my ears. I'm one of those weird kids that love to pick and peel at things, so I went to town on the loose skin on my body. Since I was so exhausted and the trash can was too far away from my bed, I peeled the skin off and dropped it on the floor. I’m sure the janitors loved me for that. One of the janitors came into my room and said, “Man, it looks like a snake was in here and shed its skin!”
Since there wasn’t much for me to do in the hospital, I watched plenty of TV shows while I was there. My favorite show from the first hospital stay was Breaking Bad. Before I tie into why it is my favorite show at the time, I highly recommend giving the show a try. The main character, Walter White, was diagnosed with lung cancer. With that news, he decided the life he was living now as a high school chemistry teacher was not the life he had always wanted to live. So, he decided to make and sell 9
methamphetamine to make money to support his family. No, I am not telling you to go home and make meth after reading this. I am just giving you a backstory to the show.
I always joke with people that Walter White and I went through chemotherapy together.
Ironically, I had no idea cancer had any role in the show before watching it. I vividly remember the episode when Walt started losing some of his hair. The reason being is that I started losing my hair the day before. In one of the other episodes, Walt had to step out of a conversation to vomit. I was vomiting just days before watching that episode. You could see how lonely I got in that hospital bed. One of the ways to alleviate my loneliness was to compare myself to a fictional character in a TV show I was watching at the time. In a sense, it made me feel like I had someone to go through treatment with.
As said by Alain de Batton, “Loneliness is a kind of tax you have to pay to atone for a certain complexity of mind.” The number of hours I have spent by myself in those hospital beds certainly has reshaped my mind. It changed the way I think, the way I act, and the way in which I now view the world.
What I was unaware of at the time was the difference between loneliness and solitude. Loneliness is the pain we experience from being alone. May Sarton described it as “the poverty of self.” Being alone in those four walls was painful for me. I felt like I had lost my identity. I no longer had any role other than being a cancer patient.
Solitude is when we can find peace in being alone. May Sarton described solitude as “the richness of self." The ability to sit down with your own thoughts, with no distractions, and not begin to lose your mind. Being able to appreciate the stillness that being alone could provide. What I did not understand was how much I was going to grow by spending all that time by myself and listening to my thoughts. There, I began to understand who I truly was.
For weeks, I was stuck on that seventh floor without experiencing any fresh air or direct sunlight.
It was the month of July, and the weather was beautiful. The sad part was that I couldn’t enjoy any of it. The best I could do was sit out on the chair in the hallway and look out to the walkway on The University of Pennsylvania’s campus. There was one bench in sight and usually at least one person 10
would be sitting down each time I went for a walk around the unit. I sat there and wondered what was going through the person’s mind at the time. Between the glass separating us both, we lived completely different lives. “I don’t think that person realizes how lucky they are,” I thought.
Those people sat on that bench with the freedom to choose what they did with their time the rest of the day. They were healthy enough to be out in the world. Meanwhile, I sat on my chair with a catheter in my arm while pushing around an IV pole with me all day long. I couldn’t believe I ever took my good health for granted. In the perfect world, I would be out on that bench thinking about my next move for the day. Wel , the world isn’t so perfect after all. It’s the little things in life that we need to learn to appreciate. I know this is a saying that is mentioned all the time, but it holds true. Somewhere out there, there is someone who would do anything to be in your situation. Who knows, maybe that person is literally staring at you from a hospital window seven floors above you.
Wherever you are in this journey we call life, you are at a point that a previous version of you could only hope for. Remember this as times get tough and you start to get discouraged. Even though I went through some rough times, I still experience challenges every day. But, whenever I start to catch myself thinking negatively, I remind myself that this life I live now is one I only could have dreamed about from that hospital window. The mindset we have when we approach our day is a glimpse of what we can expect to get out of it. If today didn’t go as planned, set yourself up for a successful tomorrow.
Remember, only you can decide whether or not it is a good day or a bad day.
11
A unique characteristic of AML is that it is possible to spread into the cerebral spinal fluid and enter the central nervous system. Because of this, a sample has to be taken from the spinal fluid to determine if the leukemia has spread there. The procedure is called a lumbar puncture.
I slouched over on my bedside and had a needle stuck into my lower spine. It was one of the most uncomfortable places I have ever had to receive an injection. I remember being so nervous about the procedure that I was shaking while they were preparing for the procedure.
Overall, it honestly wasn’t too painful. After numbing the area, I only felt pressure on my lower back. Since the medical team didn’t know if the leukemia spread into my nervous system or not, I had to receive a preventative dose of cytarabine into my spine. The goal of that dose is to begin some of the treatment just in case the results came back positive days later. Thankfully, the results came back negative.
However, the spinal injection left me with one of the worst headaches, nausea, and vomiting episodes that I have ever experienced. About an hour and a half after the procedure, the side effects hit me like a freight train. My head hurt so terribly that I couldn’t even keep my eyes open. Unfortunately for Madison, that was right when she arrived at the hospital to visit me. The whole time she was there, we didn’t have any conversation. Between my throbbing head and vomiting constantly, the only thing I was able to say was, “I’m sorry.” But regardless, Madison sat with me right by my side the entire time.
12
Figuring out something to eat in the hospital was quite the task. Along with the loss of appetite, I had some taste alterations. I found that food or drinks that didn’t have much flavor to it, like water, had a bit of a metallic-like taste to it. I remember saying to Mom, “This hospital has horrible-tasting water.” They had these small water bottles of a brand that I had never heard of before. I had my mom and Madison get me different brands of water to see if it would make a difference. But I found they all still had that same metallic taste.
The hospital food was a bit subpar to say the least. The staff at the hospital would jokingly say,
“We are a five-star hospital with a one-star kitchen.” Ain’t that the damn truth. Since I was up on the top floor, it would take a while for the food to come up from the kitchen. All plates came with a round blue lid to try and keep the food warm. To this day, thinking about that lid makes my stomach turn.
I had difficulty sustaining a sufficient calorie intake myself, so I had to receive the entirety of my daily nutrition through my PICC line. In addition to that, anything I tried to consume had to be fluid. Even the water I drank had to be sipped slowly to avoid worsening my stomach pains. Thankfully, my stomach began to heal after giving it a few days' rest from eating food. I remember when they had asked what I would want to try out for my first food in a couple of days.
I responded by asking if I could have a breakfast sandwich. The doctor laughed and said,
“Woah, hold up there. That’s going from 0-100. How about we start with some chicken broth and jello?”
I eased back into it by sipping on chicken broth in a cup. It wasn’t the most appetizing dinner I ever had but it was a start.
Another bone marrow biopsy was performed to make sure the chemotherapy was effective.
Two nurse practitioners performed that biopsy for me, and they were very efficient with it. It was nowhere near as painful as the first biopsy. Thanks to the tramadol and lorazepam I had received prior to the procedure, I was very sedated and carefree the whole time. I was barely able to keep my eyes open while I waited for it to get started. Still, I was terrified of the results of that procedure. I anxiously paced around the hospital floor as the team waited for the lab to review the sample which took a few 13
days. I thought of the worst-case scenario in which the chemotherapy wasn’t able to effectively rid the cancer from my body. In that case, I had no idea what could be done.
The feeling of knowing your life is on the line is one I would never wish upon anyone in this world. The immense pressure I felt to stay alive was overwhelming. So when the doctor gave me the news that the chemotherapy was effective, the relief I felt in my body and soul was glorifying.
Towards my third week of being in the hospital, I saw substantial improvement in my attitude, my physical health, my appetite, and even my blood values. I was up and out of my bed most of the day. One of the days, I walked close to six miles on the hospital floor. For reference, about 25-30 laps around the unit is a mile in the hospital. In between some laps, I would do “step-ups” on one of the platforms to make sure I was strong enough to get up the stairs.
My confidence was slowly crawling back. I was ready to get out of that hospital and get back to my family, Madison, and all of my friends. The problem was, I was underestimating the journey that was ahead of me. I had thought I had already done it. I thought I had beat cancer and that’s all there was to it. It seemed as if one of the practitioners felt that energy from me and sat down to talk with me.
“You know this is a life-changing event, right? You may not be able to do a lot of the things you used to do. You won’t be able to exercise, you may not feel as strong as you used to, and you might not be able to go back to school.”
The diagnosis didn’t sink in with me all the way. Like I said, I thought I was free to go and would just need to see a doctor from time to time. I didn’t realize that the diagnosis would become a major part of my life. Once I was able to digest the reality of it all, the tears started flowing again. I didn’t want this. I wanted to go out into the world and be me again. The fact that I had to keep my PICC line in my arm indefinitely made me furious. I was stuck in an uncomfortable situation that I couldn't get out of no matter how hard I tried. All I wanted to do was cry and wish for my life back.
When you are stuck in a “nightmare scenario” like that, you need to separate what you can control and what you can’t control. Focusing on all of the uncontrollable factors could make the toughest 14
of minds unhinge. I wasn’t able to control my diagnosis, the PICC line in my arm, or any of the terrible experiences I had on the seventh floor of that building. But I was able to control how I was going to handle the rest of my journey. You don’t think I could be “as strong” as I used to be before my diagnosis? You don’t think I could stil go to school while going through cancer treatment? I was willing to step up to the challenge and accept the unforeseen circumstances I was given. The only true naysayer that mattered was the opinion I had of myself. With that, the first wall of my cancer diagnosis was broken down.
15
Discharge day finally came around. The total hospital stay was around four weeks in length. As I rode down the elevator to leave the cancer unit, I had mixed emotions. I was beyond excited to get out of the hospital, but I had so much anxiety about what was going to come next. I walked down the long hal way with my mom to get to the main hospital lobby. She had sensed that I wasn’t as excited as she would have imagined. I just had so much racing through my mind. I could have taken that moment to express gratitude for how amazing it felt to get off the hospital floor and have a chance to go home. Instead, the fear of not knowing what was next was eating me alive.
The doors of the hospital opened, and the hot July air greeted me immediately. The long-awaited breath of fresh air didn’t disappoint. Seeing other people not wearing hospital attire, hearing the birds chirp, and feeling the warm breeze on my skin was much needed. I felt revitalized. I missed feeling sunlight on my skin again and breathing in fresh air. Madison and I had just signed a lease for a new apartment together in South Philadelphia. I was intrigued to see how our place looked. While I was in the hospital, a bunch of our friends and family had helped Madison put the apartment together.
I was so grateful for everything they had done for me to make sure I came back to something that felt like a home.
I remember walking up our steep staircase for the first time. It wasn’t the easiest staircase to climb not having faced one in over a month. I felt wobbly on the way up but pacing around the hospital floor and doing “step-ups” paid off. Regardless of the staircase, I was so happy with our new home.
Being able to walk around freely and go outside if I wanted was something I had taken for granted.
16
Being in the hospital for many weeks has some effects on the human body beyond the initial days at home. From that first hospital stay, I had plenty of trouble sleeping. Every four hours, a nursing assistant came around to take vital signs in the hospital. Around midnight each night, I was awoken to get my vitals checked and again around four or five in the morning. Doing that routinely messed with my sleep schedule. For the first two weeks at home, I couldn’t sleep longer than three to four hours straight because I was accustomed to being awoken during my sleep. I tossed and turned throughout each night trying to finally get a good night’s rest.
To have my temperature measured in the hospital, I opened my mouth to have a thermometer placed underneath my tongue. One night, I remember waking up suddenly because I thought someone was about to take my temperature. I woke up, opened my mouth, and said, “Ahhh.” I was delusional in my sleep. I couldn’t even tell when I was dreaming about someone being in my room or if there was someone actually in my room trying to talk to me. There were nights when my nurses caught me talking to myself in the middle of my sleep.
Nevertheless, when I first opened my eyes each morning at home, everything felt alright. When I would turn and face the mirror, that was when I was rudely reminded about how my life had been changed forever. I always wished I would wake up and it was all a bad dream, but seeing how drastic my appearance had changed made me realize this was my new reality whether I liked it or not.
My dad, Eric, and my mom all came to visit me when I first got discharged from the hospital.
For Eric and my dad, it was their first time seeing me since I got wheeled away into the ambulance. A lot had changed since that day. My hug with each of them was relieving. I could tell they both had been thinking about me a lot and were worried if they would ever get a hug from me again. I didn’t want my loved ones to see me that way because I no longer felt comfortable in my own skin.
After a few days of being out of the hospital, I went to visit some of my close friends from college back at my old house at Temple University. On the ride up, I was shaking. I hid it from Madison, but I was nervous for my friends to see me. I was insecure about my appearance. I know my friends and 17
family didn’t look at me any differently, but it was a mental hurdle I had trouble overcoming. Sitting down with my friends and verbalizing what went on during my hospital stay was therapeutic.
There was something about speaking of my cancer diagnosis early on that gave me butterflies.
It is a topic that is uncomfortable for most, but for me, it gave me a sense of relief. I enjoyed talking about it. The shaking in my hands slowly turned into a stillness as I opened up about everything that was going on inside of my mind. However, most of my friends tried to stay away from discussing it, which I completely understood. Years later, one of my friends told me how skinny he thought I looked when he saw me that day.
I had my first doctor’s appointment with my oncologist since being discharged from the hospital about a week later. It was an important appointment. It was when I would find out what the remainder of my treatment was going to look like. My doctor had discussed with me that I would be receiving four more cycles of chemotherapy. All of which would be administered in the hospital. After four long weeks in the hospital, just two weeks later I had to go back in for more treatment.
I tried to soak in every last minute of freedom I had while I was home. I enjoyed eating “real”
food again. Meaning that I wasn’t stuck with eating what was served from the hospital’s kitchen. My appetite was in full swing, and I quickly started to put weight back on. I enjoyed going on walks in my new neighborhood while breathing in that fresh summer air. There were some major adjustments I had to get used to with my return home. Since the PICC line was in my right arm indefinitely, I was unable to carry anything heavier than ten pounds with that arm because that could move the catheter out of position. I also was not able to get the PICC line wet. So, each time I hopped in the shower I had to wear a protective sleeve over my right arm. A home nurse came to our apartment twice a week to draw blood levels and to clean the PICC line site to prevent infection. With the home nurse service, I had tons of cardboard boxes and supplies that took up space in the apartment. Each day, Madison flushed heparin through my PICC line to prevent blood clots from forming in the catheter. This was done to make sure the line flowed smoothly for when it was time for me to receive medications or transfusions.
18
Going through cancer treatment during the COVID-19 pandemic was quite a unique experience. I quickly became one of the “high-risk” patients during the pandemic and had to be extra cautious out in the world. There was a constant feeling of hesitancy whenever I did socialize with friends and family. I always wondered, what if I end up getting sick from someone? That meant more suffering in the hospital.
I wore a mask everywhere I went, both inside and outside. There were plenty of people I wanted to see to reassure them that I was doing okay, but making plans while keeping myself safe wasn’t the easiest. A few times, I wore a mask indoors with my friends. It just didn’t feel right being in a comfortable space with the people I love while wearing a mask. Everyone gladly wore a mask to protect me. But I felt that if I had to wear a mask to see them I should just wait until I was “completely healthy” to even see them at all.
Many of my friends were cautious around me and expressed if they felt uncomfortable being near me in fear of getting me sick. I was appreciative of their transparency because one of the things in the back of my mind was that I wondered who all my friends surrounded themselves with before coming to see me. I was told that even if there wasn’t an ongoing pandemic, I would have been wearing a mask around people anyway. So, in a sense, everyone was going through isolation with me. Thinking of my situation in that light made me feel more at ease. I wasn’t the only one missing out on time with family, friends, and life’s normal activities. Everyone was.
As a result of the pandemic, school classes were held online for the 2020-2021 school year.
Being that I was immunocompromised and wouldn’t have been able to attend in-person classes, this worked out in my favor. As I came to realize how my life would be impacted by my cancer diagnosis, I worried that my life would have to come to an abrupt pause. I feared that I would no longer progress through life because of my cancer.
Since I had the opportunity to continue with school while going through cancer treatment, I decided to continue taking classes. Not many people thought I would be able to do it, with most 19
recommending that I took time off. But I couldn’t bear letting the diagnosis hold me back. School was difficult enough the way it was and adding cancer treatment on top of that could make for a very stressful time. I wanted at least one piece of my life that I could continue with despite my diagnosis.
Progressing through pharmacy school was that one piece.
Instead of going through the motions each day waiting for my treatment to end, I had something to move me forward. I felt like I had a purpose by completing schoolwork and taking exams. It gave me tasks to complete each day and help my mind move away from negativity. I wasn't just some sick kid who couldn’t do anything in life because he wasn’t healthy enough to do so.
When faced with life’s challenges, find something that gives you purpose. Something to strive for. Something to live for. A life without purpose is a life without meaning. For me, my purpose was to finish my education so one day I could treat cancer patients who suffer just like I did. It put meaning to each lecture, each exam, each class, and each day. Those days that the treatment was tough on my body and I couldn’t gather the energy to do schoolwork, I remembered that one day someone wil need me to help pull them out of their own nightmare of being diagnosed with cancer.
20
Cycle two of treatment was rough on my stomach. One chemotherapy drug I received during my first three cycles of chemotherapy called gemtuzumab seemed to always put my stomach into a downward spiral. I was on the first floor of the Duelles building for that treatment cycle. The nurses on the floor called it a “submarine” down there because there were no windows in the hal ways. The hal way was about 50 meters long. As always, I didn’t have much to do in the hospital. So, I walked up and down that hallway for most of my time there.
Eventually, the one nurse let me walk out to the hospital lobby around the corner to give me a change of scenery. I felt much stronger and confident being admitted to the hospital that time around.
The two weeks I spent at home gave me ample opportunity to put some weight back on, rest up, and mentally prepare for the hospital stay. For the remaining cycles of chemotherapy, I only had to be in the hospital for six days. On three of those days I received treatment.
Compared to the previous month-long hospital stay, that sounded like a cakewalk. Although, I stil struggled to find ways to keep myself occupied. I found myself watching hours’ worth of YouTube videos for entertainment. In the days that I was in the hospital during my earlier admissions, my hours spent on YouTube ranged anywhere from four to six hours a day. The one benefit of being on the Duelles first-floor unit was that the rooms were dark and quiet. I finally was able to get a few full nights of sleep without waking up in the middle of the night for the first time since before my diagnosis stay.
After a quick and seamless six days, I was discharged from the hospital.
21
With my physical ability improving, I entertained the possibility of exercising again. Since I was unable to lift more than ten pounds with my right arm, I stuck to exercising my lower body. Bodyweight squats, lunges, and calf raises are what I mostly did to attempt to keep my legs in shape. One of the nurse practitioners taking care of me was surprised to hear that I was exercising at home. She told me that most people don’t even want to try to exercise during treatment and that I should be careful not to overdo it. I told myself that the treatment wouldn’t hold me back. I felt like I had to prove to myself that my body could still be strong and handle the side effects from treatment.
About two weeks after being discharged from my second cycle of treatment, I ended up overworking my body. With my low platelet counts, I was more likely to bleed than someone with normal platelet counts. As you may know, when you exercise, small tears in the muscle occur. With those small tears and my low platelet count, I ended up bleeding into some of my “torn” muscles.
During that week, Madison and I went to get groceries from the store about half a mile up the street from our apartment. We each carried two bags home and I took the lightest bag for my right arm because of my PICC line. Since I was unable to exercise my right arm, that short walk home was enough to make small tears which led to bleeding. From lunges the night before, my right lower leg was swollen and painful too. The following day, the pain in both my right arm and leg progressed significantly. I was unable to fully extend my right arm which went on for a full month before I regained full mobility. My right leg couldn’t withstand the pressure I experienced with simply walking.
With my white blood cell count and neutrophil count being abnormally low due to the chemotherapy, I experienced a neutropenic fever at home. A neutropenic fever is considered a medical emergency because without an adequate neutrophil count, my body was unable to fight an infection on its own. I was readmitted to the first floor of the Duelles building for antibiotic and antifungal treatment of my neutropenic fever. With the pain I was experiencing, the only time I left my bed was to use the restroom. I was unable to tense up my right leg at all because the pain was so severe. To get 22
my legs out of bed, I had to either have Madison, my mom, or a nurse help me pick my right leg up to prevent me from experiencing too much pain.
My right arm was useless. It was stuck close to a 90-degree angle which made simple tasks like opening a bottle of water difficult for me. The medical team wanted to perform an ultrasound of my arm and leg to ensure that I didn’t experience a blood clot which could have led to my pain and swelling.
During the ultrasound of my right arm, I had to ask the nurse to stop because I had to vomit. The treatments and side effects were catching up to me and I no longer felt like I was making small steps forward. Each day that passed, I felt as though I was taking steps backward. To make matters more difficult, my third cycle of treatment was just a week away.
After receiving treatment for my neutropenic fever, I was discharged from the hospital. I was scheduled to see my doctor a few days after so he could check in to see if I was going to be prepared for the next cycle of treatment that was already so close. Madison dropped me off at the front door of the Perelman Center as usual. She said to me, “Make sure you ask for a wheelchair to get up to the doctor’s office.”
I felt humiliated that I had to rely on a wheelchair at 22 years old to get me to where I needed to go. My ego prevented me from wanting to ask. I stepped out of the car, and slowly made my way to the door. With each step, my pain intensified. The workers at the front door noticed my struggle and offered me a wheelchair. I shamefully accepted.
During the time up the elevator to the 4th floor, I stared down at my feet. I didn’t want anyone to see this once healthy young man in such poor shape. At that point in time, my blood counts had just about recovered. Which meant it was soon time for me to go in for my third cycle of treatment. Both mentally and physically, I was not ready for more punishment. I didn’t think I could go through it all anymore. It felt like too much. I had reached the second wall. After accepting my cancer diagnosis, this was the first time the adversity really started to chip away at me and I felt like quitting. I had to separate what I could control, and what I couldn’t control. I couldn’t control that I was soon to be readmitted to 23
the hospital again. But what I could control was how I prepared myself both mentally and physically for more hardship.
Each day, little by little, I focused on the mobility of my right arm and leg. At first, the amount of stress my leg could handle was minuscule. But, by gradually pushing myself more each day, I started to notice progress in my leg strength again. I used a resistance band to flex my foot just before the point that I experienced pain and worked on that movement. After doing this multiple times a day, I was slowly able to flex my foot further with each attempt. For my arm, I used the same technique. Not being able to extend my right elbow made my triceps incredibly weak. My arm took far longer to recover, but being able to ambulate on my own was more important to me.
Admission day for my third cycle of treatment came. I was dropped off at the front of the hospital and made the same slow walk-in as I did at the doctor’s office just a week before. Except this time, I wasn’t worried about needing a wheelchair. It took quite some time, but I was able to make it to the admissions desk on my own. Slow and steady wins the race, as they say.
For this cycle of treatment, I was admitted to the third floor of the Rhoads building. The people on that floor will always be held near and dear to my heart, as I spent the majority of my remaining hospital days on that floor. I walked down that long hallway leading to the Rhodes building which became all too familiar to me. I was thrilled that my leg was beginning to heal but my arm still was not able to be fully straightened out.
The chemotherapy for that third cycle gave my stomach a hard time once again. During one of my infusions given at night, I remember feeling very hot. I started to feel beads of sweat on my forehead and my stomach was cramping. My sleep was interrupted by having to run in and out of the bathroom frequently. However, it seemed as though my arm became the priority to the team in the hospital.
I was seen by a physical therapist who then referred me to the orthopedics team. After meeting with the orthopedics attending physician, he told me they were worried that a tumor could have formed in my right arm and needed to perform a biopsy to rule out that possibility. I was irate about it. I was 24
one day away from finishing my third cycle of treatment but now I was being told I needed to stay in the hospital for at least another four to five days. I was a cancer patient, not a baseball pitcher trying to regain mobility in my pitching arm. I understood that everything was taken seriously for my best interest, but at times I felt like there were too many people involved in my care.
In the hospital, there is a plethora of people forming a team to take care of a patient. Doctors, physician assistants, nurse practitioners, nurses, nursing assistants, physical therapists, pharmacists, dieticians, occupational therapists, food service, cleaning service, students, and the list goes on.
Outside of that, there are different specialties such as oncology, infectious disease, cardiology, orthopedics, etc. There is a mind-numbing amount of people that you meet briefly while being in the hospital. Who are you supposed to believe? Who should you ask questions? Who actually knows your full past medical history?
Taking care of a patient is like solving a puzzle. If you don’t know how to find the correct piece, there may be another person who specializes in that area who can find it for you. With more people being added to the decision-making process, conflicting ideas are bound to happen. Communication gaps can form as well because numerous groups are thrown into the mix.
The idea to do a biopsy on my arm was thought of by the orthopedics team. Since they may not encounter many cancer patients (not as much as the oncology team, of course) they immediately tried to tie my cancer to why my arm had been bothering me. The thought of spending another few days in the hospital because of a recommendation made by a group of people I have never met in my life really aggravated me. It aggravated me so much that I researched what the consequences of leaving the hospital against medical advice would be. I strongly considered packing up my stuff and walking right out of the doors when nobody was looking to avoid a longer hospital stay.
On the morning that I finished my chemotherapy and the date of my proposed arm biopsy, my oncologist caught wind of what the orthopedics team was planning. He immediately shot down their recommendation. My man pulled through like he always does! With my low platelet count and white 25
blood cell count, he did not recommend the biopsy due to the increased risk of bleeding and infection.
With that news, I was free to go home. All of that commotion just for my doctor to tell them that the swelling in my arm was most likely due to a pooling of blood (also known as a hematoma) in my arm.
Madison and I referred to the oncology team at the hospital as “our people.” No matter where I was in the hospital, they always had my back. Whether a person was taking care of me for one day or one month, they always were rooting for me to get home as quickly and as safely as possible. I trusted each and every one of them with my whole heart. I always felt a sense of comfort when I saw a member of the oncology team. It is safe to say that from there on out, I was not carrying anything even remotely heavy with my right arm after the trouble I went through during my third cycle of treatment. Regardless of how everything went, I had three cycles down, and two more to go.
In between cycles of treatment in the hospital, I saw my doctor on a weekly basis. He gave me updates, informed me of how my blood counts were looking, and set me up for blood transfusions if need be. The days that I had both a doctor’s appointment and transfusions were cumbersome. Some days, I was there for about six hours. My platelets were the most sensitive to the chemotherapy, as I had to receive plenty of platelet transfusions.
I had countless nosebleeds due to my platelets being low. There were some days that I kept a tissue shoved up my nose at all times to prevent blood from leaking out. If I had to bend down to pick something up, a drop of blood fell to the floor. Thick blood clots formed in my upper nose. If you have ever seen what Nerds Rope candy looks like, that is similar to what the clots looked like coming out. It sounded like I was congested due to the blood building up in my sinuses.
When lying down to sleep at night, some blood would leak out of my nose and end up on my pillow. Petechiae formed on my body just like it did when I first was diagnosed with leukemia. Seeing those marks gave me flashbacks to that infamous day. It was a painful reminder of the beginning of my journey and reinforced that I still had a long way to go to get my body where it needed to be.
26
Another painful side effect of chemotherapy is called mucositis. With this, sores form in the mouth and stomach due to inflammation. I only experienced the side effect twice, but it was enough to make it memorable for not-so-great reasons. Blood blisters formed on the inside of my cheeks and my gums became swollen. This made chewing most foods difficult. To ease the pain, I was prescribed a mouth rinse called “magic mouthwash.” The rinse did help but it would not last a long time. The pain could be so severe at times that it would wake me up in the middle of the night. There were mornings when I woke up and looked inside of my mouth to see blood in between my teeth.
Between cycles three and four, I developed a neutropenic fever again. Meaning I had to be admitted to the hospital once more. Around day 19-21 after a treatment cycle was bad luck for me.
That is when I experienced my most intense weakness and nausea. When I felt feverish, I would always try to hide it from Madison. I knew the right thing to do was to speak up, but it is hard to speak up when you know the results of doing so. Madison checked my temperature with the digital thermometer and my fate would be decided by the number that appeared. If a temperature of 101.1 degrees Fahrenheit or higher appeared, I had to call the oncology service and inform them that I had a fever.
With this fever, I had several sore spots on the right side of my face. The infection was most likely due to the bacteria on my face getting into these sores. The on-call resident gave the emergency room a heads-up that I was coming in. One would only hope that would limit the amount of time spent waiting in the emergency room but that wasn’t necessarily true.
Staying in a hospital room was tough, but being in an emergency room was a different animal.
It was late at night when I arrived at the hospital, so I tried to get some sleep once I was settled in the emergency room. It is loud, bright, and hectic in that area. Due to COVID running rampant throughout the city, the hospital was overflowing. Patients laid in hospital beds in the hallways waiting for a floor bed to open so they could be admitted. Nurses quickly paced around the unit to attend to the many patients on the service. There were constant beeping noises from all of the monitoring devices being 27
used. It was not an environment I wanted to be in. It almost felt unsafe for me to be in there. Do you see why I tried to keep my mouth shut when I felt feverish now?
28
During my coursework for the fall semester, we learned an overview of cancer and some chemotherapy drugs. While I was looking forward to learning about cancer through the eyes of someone who has cancer himself, it opened a door I swore I would never open. One of the beginning slides of my professor's presentation was the most common cancers across the country along with survival rates for each. I noticed leukemia was not included in the list. So, I went down the rabbit hole of researching my leukemia using the internet. Horrible idea.
I kept diving into article after article about relapse, survival rates, causes of death, and life expectancies. All this was doing was making me feel more anxious than I already was. It was a self-inflicted attack on myself. Nobody told me to research that on my own. I started to have doubts about myself, those who were treating me, and the support of my family and friends. I tried convincing myself that all of the people around me were putting on an act knowing that I would die from my disease regardless of all of the treatment. I thought, what is the point of all of this? Why would I want my last memories of life to be those of pain and suffering? As confident as I once was, I turned into a scared and paranoid man. I searched the internet endlessly for a ray of light. I wanted someone or something to tell me I wasn’t going to die from cancer.
With my mental health deteriorating and the side effects of chemotherapy taking control of me each cycle, I felt like quitting again. My third wall had been reached. When people ask me about what I found to be the hardest about going through cancer treatment, it has got to be the longevity of it. Even 29
though I recognize that in contrast, my treatment was much shorter than some other survivors out there. Nevertheless, to make it out to the other side, you must be incredibly consistent. You must be able to balance so much. Continuing to regain physical strength, remembering to take all medications, isolating yourself from others to avoid infection, overcoming intense nausea and vomiting, and keeping your mental health in check each day. Mental toughness will overpower physical strength every time.
Each morning, when life reminded me of the journey I had to overcome, I gave myself a pep talk.
“I just need to give it my all for one more day. Don’t worry about tomorrow. A wonderful life is waiting for me on the other side. But, until then, put your head down and keep moving forward. Only focus on what I can control. Leave everything else for God to take care of.”
When I reached that third wall, I lost sight of focusing on what I could control. I lost sight of the light at the end of the tunnel. I started focusing on the mystery of tomorrow without taking care of the responsibility of today. I needed to be in the moment and not stress about what was yet to come. I didn’t have the time to take a break and feel sorry for myself. Cycle four of treatment was already on the horizon.
Cycle four took place on the third floor of the Rhodes building once again. Since this was now my second time on the floor, I felt familiar with some of the staff. Everyone was supportive and kind to me. Being a patient in the hospital made me realize that when you are caring for someone, you also are caring for a whole network of people. All the people that I have met in my life who loved and supported me were depending on the hospital staff. I am pleased to say that I was put into good hands in the hospital. There wasn’t a doubt in my mind that the people there would do everything in their power to make sure I got home safe and sound.
Treatment cycle four went well, surprisingly. Thankfully, no significant events happened in the hospital this time. The nursing staff was flexible with me as well. Since my admission was straightforward, they allowed Madison and I to have dinner outside in the courtyard for a few of the days. With consistent exercises done each day for my arm and leg, I no longer had any mobility 30
limitations. Whenever I felt bothered during cycle four, I thought to myself, “Just one more. Then, I wil never have to spend another minute in a hospital bed.” The days quickly flew by and before I knew it, I was about one week away from my fifth and final cycle of chemotherapy. But around unlucky day 21, I started to feel a bit under the weather. I did not experience a neutropenic fever, but I started to feel weak and nauseous again.
I absolutely hate vomiting. I am one of those people that yells into the toilet each time I have to spit up. I started to feel like I had to vomit, so I anxiously paced around my apartment to try and prevent it from happening. Eventually, I found myself sitting on the edge of my bathtub with my head hovered over the toilet. The number of times I have puked during cancer treatment alone would surpass the number of times I have vomited in my entire lifespan.
As I held my head over the toilet with the little strength I had, I told myself that I had enough of it. I would not allow this cancer to continue to bully me day in and day out. No matter how bad I felt during cycle five, I would stand tall. No matter how badly I wanted to cry, I would stand tall. No matter how badly cancer tried to knock me down, I would stand tall. The third wall fell down that night in the bathroom and the fourth wall was so close to me that I could feel it. There was no quitting now.
Your posture is going to impact your performance. When I walked into that hospital for my final cycle of treatment, I walked in like I owned the place. Pay attention to yourself when you start to feel anxious or worried. You start to “shrink.” Your breathing shortens, your shoulders round, and your eyes look downward. Each time I felt scared, I stared down at my feet. When I was officially told about my cancer diagnosis, I stared at my feet to avoid crying in front of others. When I had to get pushed in a wheelchair to get to my doctor’s appointment, I stared at my feet hoping nobody would notice the young man who couldn’t move around on his own. This time, I walked in with my head held high.
I accepted the challenge months ago and had experienced the need to quit several times at that point. I was standing right at that fourth wall. I was ready to kick that thing down and be done with it forever. To anticipate the side effects that I would experience from the treatment, I formed a routine 31
for myself. Before each dose, I made sure to walk through the halls for at least ten minutes. Once I got back into my room, I ate until my stomach felt full and hydrated with plenty of water. When the chemotherapy was being administered, I laid in my bed and relaxed. As soon as my stomach started acting up, I used the bathroom right away to attempt to relieve it. When the infusion was complete, I walked the halls once again and ate until I was full. The routine must have had some impact during that hospital stay because I did not come up against any complications.
On November 9th, 2020, I was set to receive my last bag of chemotherapy for the rest of my life. Everyone was hyping up the moment for me. I couldn’t contain the happiness I felt throughout that whole day. Early in the morning before the infusion, I made sure to do my routine one last time. I thought to myself, “No more walking aimlessly through these hal s. I will never feel trapped like this again in my life. My freedom starts today.”
The final infusion was complete and the IV pump began to beep, indicating the infusion was over. Normally, the beeping from the IV pump drove me crazy, but this time, it meant victory. I didn’t rush for the call bell to signal my nurse to unhook me like I usually did. I soaked in the moment. I had tears in my eyes and butterflies in my stomach. I felt choked up. I couldn’t call in the nurse because I had tears of joy that I was finally done. All of those nights crying in my bed, puking into my toilet, wondering when it would all end, came to an end.
I took a video of the infusion bag and sent it to my friends to let them know I made it. Everyone was so happy for me. My nurse came in and unhooked me, and I was free to go. I walked down that long hallway from the Rhodes building knowing I would never go back. It was time to go home and enjoy that day with my family.
As Denzel Washington once said, “Without commitment, you’l never start. But, without consistency, you’l never finish.” Committing to myself and staying consistent throughout treatment allowed me to make it to that moment. It allowed me to knock down those four walls. Now, I was the only one that was still standing.
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The recovery from the fifth cycle of treatment couldn’t have gone better. With the exception of mouth sores and the usual transfusions, nothing extraordinary took place. I wrapped up my fall semester of school almost in sync with my recovery in which I had my best semester to date. It was ironic that the semester that I had the most going on in my life was when I succeeded the most. I believe the reason why I was able to do so wel is because I didn’t stress over the schoolwork. After all, I had a much bigger picture to look at.
When I first decided that I would continue with school during treatment, I accepted that I may not do as well as I would like to. I had to understand that my health was the priority and school was just there to keep me busy. I didn’t overthink exams, assignments, or projects.
Don’t be afraid to fail. If I would have been afraid of not doing well in my classes, I would have just taken the time off. I attended online classes in doctor’s offices, in chairs while receiving transfusions, and took exams while receiving chemotherapy. If you want to get something done, don’t allow whatever life throws at you to slow you down. Your true character will be revealed at times of adversity. To quote Denzel Washington once again, “Ease is a greater threat to progress than hardship.”
Life isn’t meant to be easy. The greatest accomplishments in life are those that we had to break a sweat for. Completing both cancer treatment and pharmacy school classes at the same time was the toughest feat I had accomplished at that point in my life. It felt like it was the first time I was truly proud of myself. Not because I had a great semester, but because I knew how low I sank during those months but still persevered. Having gone through that made me a better man, son, brother, friend, significant other, and co-worker.
When my blood counts had recovered, I went into the doctor’s office for one last bone marrow biopsy. After the biopsy, I was finally able to get my PICC line removed. Getting it removed was one of the most liberating feelings. For months, I wasn’t able to be fully functional with my dominant arm. After the catheter was taken out, I was able to see what it looked like. It just looked like a long, skinny piece 33
of tubing. I didn’t feel any pain when it was taken out which is something I worried about. With both the biopsy and PICC line removal being finished, I was able to head downstairs to where my parents were waiting for me. We all were so grateful for that moment. Our nightmare had ended, and we were a happy and healthy family once again.
My parents drove me home and I went straight to my recliner. Knowing that everything was over, I kicked back and relaxed with not a care in the world. No more nursing visits, no more hospital stays, no more vomiting, no more cancer. Man, why can’t life always be this easy?
As I think back to that immaculate feeling I had being in my recliner with my cancer treatment behind me, one thought popped into my head that sank deep. As excited as I was for myself, an even larger cause came to me. My thought was, I could help someone else experience this same feeling. I had a golden opportunity to step into a role in the healthcare field that could help cancer patients return home to their families and friends. I was blessed with the opportunity to feel like I had a life worth living again. It felt like I was on top of the world. I would do anything to share that feeling with everyone. I feel as though the best way to do that is to help others experience that same victory by managing their medications in the hospital as a pharmacist. Not only that, but by sharing everything I had gone through with cancer. With that, I hoped to give those in the healthcare field some insight into what it is like to be the patient in the hospital bed. To give cancer patients hope and inspiration to keep fighting. To let the world know what having cancer is really like.
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You may never know what you had until you’ve lost it. I was now a healthy twenty-three-year-old and couldn't have been more thankful. People don’t realize that normality is a blessing. Most want money, fancy houses, cars, or fame. But not many realize that if you are fortunate enough to say you live a “normal” life, you are already blessed. Let’s think of one thing most people can relate to. A lot of people hate going to work in the morning. There are many people out there who are not able to work even if they wanted to due to disabilities and health issues. But yet, some feel mad at the world that they have to wake up in the morning and earn a living.
If you think about it, for the majority of our lives we do monotonous activities. Straightening up the house, cooking dinner, walking the dog, taking the kids to school, and commuting to work are some that come to mind. I’ve begun to realize one of the keys to living a peaceful and joyful life is how you view these repetitive actions.
A beautiful ideology I read helped transform my perspective on the “boring” parts of life. It’s not that “I have to do this.” It’s more so I’m lucky that “I get to do this.” Do you see the difference? You had a long day at work. You get home and realize you still have to make something to eat for your family.
Great, you “have” to make dinner even though you’re tired and want to rest. Or do you “get” to make dinner for your family?
Some daily activities I do today seem dull and uneventful. But I remind myself that even cleaning the dishes in the house is something I “get” to do. There was a time that I was in the hospital and not home to be able to enjoy home-cooked meals. There was a time during treatment that I wasn’t hungry enough to eat. But now, I “get” to clean the dishes because I am healthy enough to be home. I have 35
enough of an appetite to eat and I have enough money to put food on the table. Next time you feel like pouting about the fact that you “have to” do something, think about all those that don’t “get to” do that.
I returned to both jobs I previously held before my diagnosis. I was working as a pharmacy technician in a grocery store and a pharmacy intern at the same hospital where I was treated. Walking back into the hospital for work was a chilling experience. I walked into the same doors that I had just months before to receive cancer treatment. I knew that working in that same environment would be a bittersweet experience. It felt like I had won being back in there. I was there as a fully functional human being and not because I needed medication to keep me afloat.
Having missed about half a year of work at the hospital, I had to get retrained. For training, I had to relearn the routes that the interns took to deliver medicine throughout the hospital. One of those routes was to the Rhodes building. I didn’t know how I felt about that. I felt nervous for the nurses to see me. I wanted to give them all the love and thanks in the world, but I just didn’t know how to express it to them. My appearance was also different. My hair had grown back much darker and I wasn’t as skinny as I was during treatment. I worried that they wouldn’t have been able to recognize me.
I walked the same floors in my polo and khaki pants as I did with my IV pole, hospital socks, and PICC line in my arm. I walked by the same rooms that I was once a patient in. Now, I was on the other side of the hospital bed. I carried the same medications that I received but now they were for someone else. It was an experience like no other. Not many cancer patients revisit the floors they were treated on, but I was able to do that.
I saw some of the nurses who took care of me, but I didn’t have the courage to express my thanks. I was worried about not being able to say the right thing to express how truly thankful I was. I made the interaction about me, and not about them. I am still ashamed that I didn’t decide to speak with them. The nurses that took care of me were angels. They did everything they could to comfort me in times of need. My Mom told the staff during one of my admissions that because of them, she was put at ease that her son was being watched over by such an amazing group of people.
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If I am lucky enough that this book reaches the hands of someone who took care of me in that hospital, you are the reason why I am healthy today. I can’t put into words the love I have for all of you but know that I will do everything I can to pay it forward. You will forever be in the hearts of myself, my family, and my friends. Thank you.
Every chance I got, I was going to make leukemia pay. Each day I woke up with a chip on my shoulder. Cancer made an attempted murder on me. It tried to take everything from me. I knew that at any given moment, everything I have ever known could be taken from me. I was fired up about all of the beatings I had taken over the last few months. I would never allow anything in my life to do that to me again. I had the privilege to be a survivor from cancer. As the late Stuart Scott said, “You beat cancer by how you live, why you live, and the manner in which you live.”
Not everyone is fortunate enough to make it to the other side of a cancer diagnosis. I had to continue fighting. Not only for myself, but also for those who can no longer fight. I need to be an example for those who need inspiration to keep fighting. That is why I approach each day with such focus. I want to impact people's lives in a positive way. Not just those who are battling cancer, but all people.
Each of us, no matter how big or small, experience our own struggles throughout life. There is room for improvement within ourselves each and every day. If I gave you $86,400 each day and told you that after today you can never get that money back, you would do everything in your power to spend all of that money, right? Well, you get 86,400 seconds each day. After today, you can never have that time back. Use your time wisely.
37
There is an old saying that I once heard that reads, “This too, shall pass.” If you are in a situation that you feel beaten down and you no longer have the desire to get back up, this too, shall pass. If you feel anxious about an important event that is coming up later in the week, this too, shall pass. If you feel you have the energy to take down anything this world could possibly throw at you, this too, shall pass.
Whether we like it or not, everything in our life will change at some point. What will stay consistent throughout our lives is the person we will have the most conversations with. That person is ourselves. We are a product of our environment, the people we surround ourselves with, and the thoughts we have during each day. Being able to find a pleasant “home base” in our mind is essential to being able to overcome the ups and downs each day will present. If we cannot be in charge of our own mind, we become a slave to our thoughts, feelings, and emotions. “The happiness of your life depends upon the quality of your thoughts” as it was well-said centuries ago by Marcus Aureulius.
Remembering that “This too, shal pass” encourages us to live in the moment because what is happening today will not last forever. It teaches us that with every downfall is another opportunity to rise to the top of the mountain. But once we are on top of that mountain, we won’t always be able to stay and enjoy that view forever. Or at least, not as long as we all would desire.
As you go about your days, really focus and listen to yourself. Pay close attention to the thoughts that run through your mind on a daily basis. When something doesn’t go your way, how do 38
you react? If someone disrespectfully talks to you, how do you react? When you are just minding your own business, what do you think about? There are ways we can improve our self-talk each day.
Training ourselves to remain in our “home base” in times of pain and discomfort wil propel us to a whole new level in life.
After my first battle with cancer, I couldn’t find my home base inside of my mind. The thought of a relapse gloomed over me like a gray cloud. My biggest fear was having to do it all again. I knew it was a possibility, but I couldn’t come to terms with it. I was paranoid. I inspected my body each day for petechiae. Whenever I felt warm or cold, I always questioned if I was experiencing a fever. Whenever I blew my nose, I always looked to see if there was any blood. I knew how blessed I was to be healthy again, but the mental scars I had from treatment remained open.
Each time I looked at my right arm, I saw the scar from where the PICC line once was. Don’t get me wrong, I hated being in the hospital more than anything. But having a care team watch me closely each month took the stress off of me to look for any warning signs of relapse myself. Being on my own, something I coveted so dearly all of those months, worried me. I seemed to have missed the constant supervision and monitoring. I tried my best to not let those thoughts take control of my peace of mind. My life at that point was starting to take shape again.
When January 2021 came around, everything came crashing down once again. I was working both of my jobs and the spring semester had recently begun. At my hospital job, I got miles worth of steps in. Each morning, I woke up feeling sore. But, for some reason, the soreness was not going away. I told myself my body was still readjusting to the physical requirements of daily life. I wore a mask at both the hospital and the grocery store pharmacy. I noticed my chin felt numb after taking my mask off one day. My guess was that the mask rubbing against my chin caused an abnormal sensation.
No big deal. My body had been through worse so this would just be a cakewalk.
The third weekend in January, I went to visit my hometown to see my family. I was able to appreciate family time more than ever. I always made sure to spend time with family when we had the 39
opportunity. My trips home were much more enjoyable now that I didn’t need to worry about staying close to the hospital for home nursing visits, weekly doctor’s appointments, or necessary transfusions.
While looking in the mirror at home that weekend, I noticed a small patch of red dots by my right shoulder. I took a moment to get a good look at it, and it resembled petechiae. After all of the days of inspecting my body hoping to not see anything alarming, my heart dropped when I saw that mark.
“Alright, don’t panic. Just stay calm,” I thought.
My Mom was sitting in my living room. I calmly said, “Mom?”
She looked at me with a big smile on her face as she always does. I hated that I had to ask this question to her.
I began to cry and had trouble getting any words out. I pointed at the mark and finally said,
“Mom, please tell me this isn’t petechiae.”
My Mom didn’t think it was anything of importance. She gave me a hug and told me to just keep an eye on it. We thought it could have been a rash. I closed my eyes and prayed, “Please God. Please don’t make me do this again.”
We both went out to the kitchen table to have dinner. Not long after eating, I grabbed a tissue to blow my nose. Out of paranoia, I looked into the tissue.
I saw blood. Panic mode started to set in.
I immediately called the oncology helpline at the hospital. It was a number I thought I would never have to call ever again. I spoke with the resident who was on duty that night. We discussed that there should be no reason to have petechiae at that point in time. As for the blood in the tissue, that could have been from having a dry nose during the winter months. The remark about the blood in my nose being from the dry air put me at ease. In fact, the mark by my shoulder didn’t look as dark and obvious as I previously remembered petechiae to look like either. I had a doctor’s appointment just three days away, so I kept all my worries hidden until I spoke with my doctor. Until then, it was just a waiting game.
40
I glanced at my shoulder numerous times each hour in hopes that it would disappear over those next three days. To my surprise, it slowly began to fade by the time Tuesday came around. I met with my doctor and showed him my mark. He didn’t think it was petechiae. After reviewing my lab values from the blood draw that day, he said there were no problems with my bone marrow. Like the resident, he also thought the bloody nose could have been from the dry winter weather. So, it seemed as if it all was just a terrible coincidence. I breathed a sigh of relief and walked over to my work shift at the hospital across the street.
Time continued to pass, and I noticed another petechiae-like mark form once again by my shoulder. This time, it was on the opposite side. Later, small red dots started appearing on my feet. I couldn’t take this game anymore. Worrying about my health made up a large majority of my daily thoughts. I requested to see my doctor again and had more blood taken. At that appointment, my platelets were a little lower than previously. But it was still at the lower end of normal. It was strenuous to go about daily life while all of that was happening. Once again, it felt like my body was preventing me from being able to handle human life. I had so much frustration. Why the hel can’t my body take care of itself? What am I doing wrong? I felt imposter syndrome. I felt as though living a normal healthy life wasn’t for me anymore. My mind wanted to be out in the world amongst everyone. But my body wanted to be back in that hospital bed. And maybe, it needed to be back in there.
With a follow-up doctor’s appointment not long after the previous lab draw, the severity of the situation escalated. I got my labs drawn as soon as I got to the doctor’s office as usual. As I sat in the waiting room, I noticed my doctor walk by the door and glance outside as if he was looking for someone.
Alright, no problem. But, as I got taken back to the room, my doctor was already in the room waiting for me.
Major red flag.
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For those who see a doctor frequently, you understand that you always have a wait to see your doctor. The doctor will never be in the room waiting for you unless there is some bad news to be discussed.
My labs came back. My platelet count continued to drop well below normal levels.
“This is way too early for something like this to happen in your particular case,” said my doctor. “The only way to see what’s going on here is to take a look at the bone marrow.”
I couldn’t believe that now even my doctor feared a relapse. I was taken to another room to have a bone marrow biopsy done. I laid face down on the bench, motionless. I had no expression on my face, just pure defeat. The nurse practitioner and assistant tried their best to cheer me up, but there was no getting out of this one. I had spoken to my doctor about some of the severe headaches I had been experiencing and he ordered an MRI to be done as soon as possible.
I went downstairs to interventional radiology. I could barely speak to anyone down there. My voice was faint from feeling distraught. I hung my head in defeat until I was called to walk back for the MRI. I laid down in the tight space under the machine and closed my eyes as hard as I could. Please God, don’t let anything else bad happen to me today.
When I went through my cycles of chemotherapy, I prayed that those hard times would pass so I could enjoy life again. When everything felt as if nothing in the world could possibly go wrong with me anymore, there was something I forgot. This too, shall pass. Everything ends, whether good or bad.
Everything ends, whether we want it or not. When experiencing a rough patch in life, you have to be able to put your head down and weather the storm. As Kobe Bryant said, “No matter what happens, the storm will eventually end.”
The times we want life to speed up so we can get out of a situation are when the days feel the longest. The times we want life to slow down so we can soak in the enjoyment are when the days feel the shortest. It is the ultimate paradox. If I am being honest with myself, I did truly enjoy the moments that I was healthy again. However, I struggled to only focus on the controllable factors in my life. Instead 42
of staying in the moment, I kept worrying about the future. When my health started to decline, it felt like I barely had any time to enjoy myself. I wanted life to move slow, but it went by oh so fast.
I was parked far away from the doctor’s office that day. It made for the perfect walk of shame all the way to my car. I walked with a slight limp due to the pain in my hip from the biopsy with tears in my eyes. It was a cold winter day, but I felt no need to rush to my car. It felt like someone had it out for me in my life. Someone or something didn’t want me to live. I kept sinking into an ocean of fear while I struggled to tread on the last bits of hope I had for living a full life.
When I returned home, I told Madison about the biopsy. She couldn’t believe that’s where everything was going either. I sat down and ran through every single possible scenario that could result in me being cancer-free. Over and over, I tried convincing myself nothing would be wrong. And you know what, it seemed to have worked. Later that night, I was convinced that it was just a strange trend that would soon normalize on its own. The biopsy would come clean and there would be nothing to worry about. I let my doctor know to call me as soon as he had some information about the results.
The following day while attending one of my online classes, I received a call from the doctor’s office.
“Some of the bone marrow results are in. It looks like the leukemia is coming back.”
At that moment, everything in my mind went dark. Right before answering the call, I was sitting on the edge of my couch with an optimistic feeling. When my doctor broke the news to me, all of the sadness, heartbreak, and shock sank right into my chest. He told me that I needed to be admitted to the hospital within the next few days for more treatment. Until then, that was all the information he had for me.
Madison sat next to me during the phone call. She could see in my eyes what he had told me, and she began to cry. After the conversation, I hung up the phone and dropped it to the floor. I don’t even remember what happened those next few hours. I received the call in the early afternoon and by the time I snapped out of my daze it was dark out.
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The news of a relapse was much more painful than the initial diagnosis. The first time around, it was completely unexpected. I didn’t even believe it. For the relapse, I knew exactly what was going on. I knew about the sleepless nights in the hospital, vomiting until I couldn't breathe, the beating my body was going to take, and the emotional blows that I had coming straight for me. I had originally thought that my first battle with cancer was the toughest experience I would ever have in my life. I thought that I had already hit my rock bottom and that life was all looking up from there on out. As I know now, it could always be worse. Much, much worse.
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One of the toughest parts of a diagnosis or a relapse is sharing the news with those who care about you. My parents and my brother were on their way to my apartment the day I found out about my relapse. My dad’s birthday was just a day away and we were all getting together to celebrate. I dialed my mom’s cell phone number and waited for her to pick it up. She answered and I heard the joy in her voice. They were not far away, and they were excited to spend time with Madison and I.
After letting out a few breaths I told my mom that my doctor had called me. It took me a moment to collect myself, but I finally told them.
“It came back. I have to go into the hospital for more treatment.”
I felt the energy get sucked out of her once I said those words.
My family arrived within an hour of the phone call. The mood shifted and it wasn’t much of a happy get-together. I hugged my family one by one and they told me, “We wil get through it again.”
We ordered some food and tried to keep a positive conversation. But I couldn’t help but constantly think about what was coming next. To make matters worse, due to the increase in COVID cases around the holiday season, the hospital was no longer allowing guests to visit patients. I was going to have to face a whole month of treatment all alone.
I was ashamed that my body could allow the evil inside of me to take over again. Having cancer once in my lifetime was enough to deal with but facing a relapse just seven months later left me petrified.
I felt the cancer inside of me. My bones began hurting me and I experienced joint pain throughout the day. It seemed like now that my mind was aware of the relapse, the disease went on a 45
rampage. My left knee in particular felt brittle. When I stood up, my knee would buckle, and I had to regain my balance each time. Just like when I had torn a muscle in my right arm months ago, I wasn’t able to fully extend either of my elbows. Pain flared up on my shoulders and back when I laid down at night. After experiencing all of that, I fully understood why most cancer patients required strong pain medications to control their pain. The total body soreness and joint stiffness were unbearable. It made sleeping at night almost impossible. I tossed and turned for hours in those last few sleeps in my own bed at home.
Madison and I went to the store to try and grab as many snacks, clothes, or other accessories to make me as comfortable as possible for my hospital stay. While in the store, I received another call from my doctor. He gave me a summary of what the next few weeks would look like. I would be admitted for about a month for a cycle of treatment. The chemotherapy used would slightly differ from my first few treatment cycles. I then was told I would require a stem cell transplant.
Hearing the word “transplant” sent a chil down my spine. When you think of a transplant, you think of an organ failing in a person’s body and now that person needs an organ from someone else in order to stay alive. I also thought of having to go through an intense surgery. Luckily, my doctor told me that the transplant was just like a blood transfusion that would go through my PICC line. Still, the fact that my treatment plan had come down to a transplant was enough to instill fear in me. I remembered back to my first initial hospital stay when the nurse said, “Wel they aren’t talking about a transplant, so that’s a good sign.” But there I was, preparing for a transplant for another chance at a cure.
I tried to get as much information from my doctor as possible regarding why the relapse happened as soon as it did. But until the remainder of the genetic tests came back from the biopsy, there wasn’t much to say. I had so many questions, concerns, and scenarios to go over with my doctor.
I needed answers for why that had happened to me again, but there were none to be found.
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With just one day before my admission, I held onto Madison so tightly. I couldn’t believe I had to leave her again to go into the hospital. This time, she wouldn’t be able to visit me. I had no idea how I would do this all by myself. The support of both my mom and Madison boosted my recovery during treatment in the hospital. There were daily functions I was going to need someone to help me with. I couldn’t accept that the relapse had become a reality and there was no escaping it. I couldn’t overcome the first wall. Can I please get a break from all of this? There was no chance I would be able to handle cancer again this soon. I was just getting acclimated to treatment-free living. My last hospital stay wasn’t even three months ago!
It felt like the beginning of the end. For the first time in my life, I truly imagined what it would be like to die. Leaving everything I have ever known and everyone I have ever met before, forever. I pictured laying in a hospital bed with my family surrounding me as I took my last breath. The person laying on the bed was just a fraction of the person I was supposed to become before cancer ruined my life. I pictured what my funeral would be like. I imagined who would be there. I thought of some of the conversations I would want to have with Madison, my family, and my friends before it happened. I feared that my time was coming.
We never truly realize that life isn’t forever until it's too late. This life is temporary. Sit down and let that sink in. Knowing that we will die one day brings about the need to express our love for those who are special to us. The urgency to accomplish our dreams.
Time moves fast. We never will know how much time we have left. That is why it is crucial to act now. Act with focus, perseverance, and determination for everything you have ever wanted. Give a phone call, a hug, or a kiss to everyone who has ever had a positive impact on you.
When I had those dark thoughts about my life ending, I didn’t think about what people thought of me or how much money I had. But yet, these seem to be what many people care about most. Reflect on what is most important to you and whether or not it aligns with what you want to be remembered for. Do you want to be the person who just waited for death to come about? The person who never 47
stepped out of their comfort zone and always chose the easy way out? The person that always kept to themselves and never spoke to their friends or family before they passed away?
Or you could be the person who changed the lives of others. The person that younger generations aspire to be like one day. Steve Harvey told a story once about a man who went to the hospital to see his grandmother one last time before she passed away. She asked the man, “Do you know your great-grandfather’s name?”
The man didn’t know the answer.
She said, “Well, that’s because he didn’t leave you anything. When I die, I want you to go out of this hospital and live a life that your grandchildren’s children will remember your name.”
We all should strive to be the best we possibly could be. Give your great-grandchildren no reason but to know who you were and what you have done with your time on Earth.
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I slowly gathered my belongings to take into the hospital, again. It’s tough leaving a place that feels like home for a place where you feel held captive. My eyes felt heavy. I looked down at the ground and I didn’t say much during the morning of my admission. Any ounce of toughness I had inside of me was gone. I felt like a dead man walking. Before entering the hospital, I was scheduled to have another PICC line placed. I made sure to give preference to have the line put in my left arm this time. I took one last glance at my left arm to see what a clean arm looked like.
I laid on a hospital bed in the interventional radiology department and waited to be taken into the procedure room. Once they were ready, I was wheeled back. I stared up into the bright lights as my arm was injected with lidocaine to prepare for the line placement. The procedure was quick. Before I knew it, a new PICC line was in my left arm. Now, there was nothing left to delay my hospital admission.
My Mom and I walked down to the car to grab my bags to walk over to the hospital. I tried stalling as long as I could. I sat slouched down in the passenger seat with my lip quivering. I couldn’t do this alone. I would have given anything in the world to be taken home with no consequences.
Whether I was ready or not, it was time to head over. It was time to accept the challenge of this relapse and break down the first wall. There was no going back now.
My Mom and I made it to the admissions desk where I checked in and received my hospital bracelet. My room was cleaned for me, and it was time for me to head up. After exiting the admissions 49
office, it was time to say goodbye to my mom. I gave her a hug and she told me she knew I could do it. At least someone believed in me, because I had no belief in myself. I knew how much it hurt her to see me walk to the room by myself knowing the struggle I was about to go through. I had my bags piled up on a cart and I started my walk down that long Rhodes hallway once again. Tears welled up in my eyes. It didn’t feel right having to face that hospitalization on my own.
I checked in at the nursing station on the third floor and was guided to my room. I saw many familiar faces which took some stress off my shoulders. Admission is usually busy. Nurses popped in and out to get vital signs, height and weight measurements, and asked admission questionnaires. Two physician assistants came into the room to gather some admission data on me. We talked about the symptoms I was having, how I was feeling now, and the current plan. I was going to receive the FLAG-IDA regimen which consisted of fludarabine, cytarabine, and idarubicin. I asked specifically about the genetic testing done from my most recent bone marrow biopsy, but no new information was available on their end. One of the worst moments with a long hospital stay is when all admission requirements are completed. Then, the waiting game begins. The door closes, and you’re left with those same four walls.
Bright computer screens, call bells sounding off, and an uncomfortable bed all reminded me of how much I did not miss being in a hospital. I was back under the care of the hospital staff at all hours of the day. With this quick turn of events, I had to get in contact with my school to inform them that I could no longer continue with the semester. Not long after, I was told by my manager at the hospital that I ran out of disability leave and that they no longer could hold my position. Slowly, piece by piece, I was losing all parts of my life as I knew it.
A term that I used many times during my journey was “rock bottom.” At the time, it felt like I had hit my rock bottom again. Nothing in life was going right for me. And, you know what, I hated my life at that point in time. What we need to realize is that life doesn’t owe us anything. Things don’t happen to us; they happen for us. A lesson could be learned from each downfall that we have. I had to hit the 50
said “rock bottom” to be able to appreciate the opportunities that I have now. We won’t understand the lesson while we are in the moment. All we will want to think about is how bad it sucks. We will ask,
“When will this end?” We have to find comfort in being uncomfortable.
I was put in a position that I had no control over. Even if I wanted to quit, I had no way out of it.
Even with prior experiences in this same type of situation, I struggled. We have to be able to adapt and roll with the punches. What works one time around may not work the next. I had no preparation for the relapse and had no plan as to how I would handle it. Fear overcame me and my emotions became out of control. When emotion goes up, intelligence goes down. I encourage you to not make decisions when you are emotional. Just like most other things in life, it is a skill that can be improved with practice and self-awareness. Always try to return to your home base before making a decision. I was far from my home base in my mind early during my relapse which took me down a slippery slope.
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Have you ever felt pressure before? I probably know what you are thinking of. Public speaking, job interviews, rushing to meet a deadline, or athletes with the game on the line. Wel , that isn’t pressure. Those are common occurrences of life. Pressure is when you have lost all hope, but you still have to make a choice. Isn’t it funny that the hardest questions in life often have the easiest answers?
Yes, or no. Teddy Roosevelt once said, “Courage is not having the strength to go on. It is going on when you don’t have the strength.”
I was under the most intense pressure of my life early during that hospital admission. I had just finished the chemotherapy regimen and we were waiting for my blood counts to run their normal course of dropping down to later recovering in a few weeks. My body was weak, my mind was broken, and my hope was far gone. I didn’t see myself making it out of the hospital. I truly believed that. Anything I had worked towards in my life was gone. My physical health, gone. My ability to progress through school, gone. The hospital job I had, gone. The sanity I once had, gone. I was pushed towards the edge. I hated that I was constantly being hurt. It was time that I took charge. I wanted to hurt myself instead this time.
The time was now around midnight. My vital signs were already taken and nobody else was scheduled to bother me the rest of the night. I scanned the room for anything that I could use to injure myself. I looked in the bathroom. I looked under the bed. I looked in the drawers. I looked at the walls.
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I couldn’t find anything. As I returned to my bed, I looked over at the bul etin board and I noticed several thumbtacks pinned there.
My plan was to take the thumbtacks from the board and repeatedly stab myself in my legs. I had a red blanket with me from home which could make the blood hard to notice. Since my white blood cells and platelets were low, my hope was that my wounds would become infected and continually bleed overnight. Whether the nursing staff found me dead or alive the following morning, that would be for God to decide.
As you could tell by now, I put a lot of thought into this plan. This is what I wanted to happen. If the world could choose to make me suffer, why can’t I choose to make myself suffer this time? I stood up from my bed and walked over to the bulletin board. My fists were clenched, my legs shook, and my vision became blurry from the tears in my eyes. I stared at the thumbtacks on the wall. With the most important question of my life, I had to make a decision. Would I choose to risk my entire life because of how I felt in that very moment? Yes, or no. Now, that is pressure.
I let out a gasp of air and started sobbing. I knew I needed help. I turned around from the bulletin board and went back to my bed. I was ashamed of myself to have even thought of doing such a catastrophe to myself. I called Madison to tell her about the thoughts I was having and how I couldn’t be there alone. I felt the terror in her voice and we both cried over the phone together.
“If there is no you, then there is no me. We are in this together,” is what she said to me.
I told her over and over that I wasn’t going to do anything to myself. I just wanted to shut my eyes and hope to wake up in a new frame of mind in the morning. Not long after, a nurse came into my room to check on me. “Are you okay? I heard you were having some not-so-good thoughts and I wanted to come see you.”
Madison told my mom about my meltdown, and she immediately called the nursing station.
Before I knew it, Madison showed up to my room and was holding onto me in my bed. I couldn’t believe how badly I let the negative thoughts control me that night. I had the support of so many amazing 53
people but yet I tried to give up on them. I was tense and still shaking from the pressure I had to face, but a hug from Madison instantly calmed my nerves. I just needed someone there with me.
Cancer patients must deal with an enormous amount of anxiety and stress. As hospital staff, we don’t always recognize this. After what we consider to be a “long shift” or a “hard day”, we get to go home. We get to go home to receive a greeting from our family or whomever we live with. When a patient has a rough day during a hospital stay, we spend the night in the same bed you saw us in the morning. There is no stopping home to see family or pets. No home-cooked meals. No peace and quiet to get a good night of sleep. We only wake up and do the same thing all over again the next day. And how about that handsome paystub many healthcare workers receive in their bank account after a pay period? Patients put in a 24/7 shift and don’t receive a penny. In fact, we receive a not-so-handsome bill in the mail from the hospital.
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That night, I was put under continuous observation by the hospital staff. The blinds from my room had to remain open while a nursing assistant watched me throughout the night. Having someone watch me as I tried to sleep made me feel like I was insane. My Mom drove all the way from my hometown which was about two hours away to come see me in the middle of the night. I was upset with her for telling the hospital about my thoughts. I knew I had messed up and I just wanted my family and Madison to know, nobody else. Now, the staff had to put extra precautions in place to make sure I didn’t try anything.
For hopefully the first and only time in my life, I fell asleep with a man watching me the whole time. In the morning, the team obviously had to discuss the overnight events with me. A psychologist was going to stop in to evaluate me. I had to be cleared so I wouldn’t have to be watched by the nursing assistant all day.
Looking back, I understand why the hospital had to do all of this. It was in my best interest that the situation was taken seriously. But, at the time, it made me even more upset that I had to deal with all that along with everything else. I treated my mom poorly that night even though she did everything in her power to comfort me. I was upset with her for “making the situation worse.” As any mother would, she made the right choice for her son and I am so grateful for the protection she provided me that night.
It was me who caused the commotion that night and I shouldn’t have been discouraged with the consequences.
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The psychologist came in and I had to speak with him about what happened the night before. I felt embarrassed to say everything out loud. I felt weak. My emotions had subsided in the morning, but I had to own up to what was going through my head just a few hours ago. I explained that I just had a
“micro thought” of hurting myself. It was the first time I had ever contemplated it and I pray that it wil be the last as well. The psychologist understood where I was coming from and emphasized that if I ever needed someone to talk to that I should speak up and let them know. After that conversation, the psychologist cleared me. Thankfully, I no longer needed to be watched by the nursing assistant. Bye-bye to you sir!
The pressure I had felt on that night was like no other. No decision that I have made in my life thus far was more important than the one I made by myself during that hospital stay. I truly don’t know what convinced me to stop at that moment. It was the second wall of the relapse, and I never had an experience even remotely close to that in my life. I never felt the urge to quit so badly. With that now behind me, I had to refocus on the situation. I had to find new ways to get back to my home base in my mind and not go off the deep end again. My time in the hospital was far from over so I needed to find ways to keep my mind occupied and keep my thoughts positive. Lucky for me, I had some great news coming my way.
The oncology team voiced their opinions in the hospital and expressed that an important part of the healing process for cancer patients was being able to have visitors. After being alone for over a week, I was finally able to have visitors come and visit me. I was able to have one visitor per day during a narrow time frame. Once the visitor left the building, they were not able to come back for the rest of the day. With my mom and Madison being able to take turns visiting, it lightened my mood. It was a tremendous help having snacks and drinks to enjoy from home rather than what the hospital supplied.
I lived off of microwavable soup and crackers during those weeks. Now, I can’t even look at that trash without getting sick to my stomach.
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To pass the time, I played a ridiculous amount of NBA 2K on Xbox. I am surprised my eyes didn’t start to bleed from staring at the television screen for hours each day. It was a great way for me to pass the time there. I only took breaks to go on short walks in the hallways, shower, eat, and sleep.
I didn’t have much else going on.
I felt exhausted from that chemotherapy regimen. I slept a staggering number of hours each day. Over a two-day span combining sleeping at night and napping during the day, I probably slept over thirty hours. I went to bed around ten at night. I slept until ten in the morning. I had some breakfast, went for a walk, played some NBA, and fell asleep with the Xbox controller in my hands. After waking up, I would repeat the same cycle with another nap in the evening.
There was an evening I recall being out of breath while I washed myself in the shower. A simple motion like scrubbing my armpits made me start huffing and puffing. I threw some clothes on, hopped into bed, and slept for another two to three hours after showering on some occasions. Because I was hardly ever awake to see the clock, time seemed to be moving quicker than usual. My appetite was able to become more consistent. I didn’t lose much weight at all. To my surprise, I may have lost only five pounds in the hospital. But with my blood counts dropping as each day passed, more obstacles were being placed in my path to discharge.
I had a stretch of days where blood clots formed deep in my nose and maneuvered their way into my mouth. I tried blowing my nose to get them out, but it didn’t always work. I felt like I had congested sinuses. There were instances when the blood clots started to hang into my mouth and it triggered my gag reflex. I tried to make myself vomit to get rid of the discomfort. It was a nasty game of trying to get the long piece of clotted blood out of either my nose or mouth.
In several spots on the right side of my face, big welts formed from skin infections. The spots were inflamed and painful. Another spot formed down by my groin days later. Due to my compromised immune system at the time, I started becoming feverish. The good ole’ infectious disease team became a part of my care because oncology put in a consultation for them to look at my skin.
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For reference, I was being treated in a teaching hospital. So, that means various learners are involved in patient care in order for them to gain experience in the field. When I started being seen by the infectious disease team, the number of people who came in and out of my room each day exploded.
Around eight in the morning, a student came in to get an initial assessment. A few hours later, a resident came in for another assessment. The resident would sometimes have another student with them. A few hours after that, a student, resident, and attending physician all came in to see me at once. It was a bit of overkill. Add that on top of the nurses, nursing assistants, food service, sanitation, oncology physician assistant, and the oncology attending physician who would also come into my room throughout the day.
Each person in the room, one by one, observed the sores on both my face and groin. This is where I need to criticize how teaching hospitals operate. I clearly was having mental stability issues during my time there, but the infectious disease team did not seem to be aware of that. I understand the premise of how teaching hospitals work now that I have seen both sides of the hospital bed, but I believe patients deserve more respect and autonomy when it comes to those situations. If given the opportunity, I would have rathered only one or two members of the team working with me. But then again, that’s on me for not feeling confident enough to speak up for myself.
The attending physician decided they wanted to perform a biopsy of the large sore spot by my groin to determine which antibiotics would be necessary to treat my skin infections. The minor procedure would involve numbing the area with lidocaine, removing a piece of the skin by my groin, and using a single stitch to close the wound. Since I knew the biopsy would be best for me to prevent the infections from worsening, I agreed to the biopsy. However, it didn’t seem as though I had much of a choice. Magically, the team already had all of the necessary equipment hiding behind their backs just waiting for me to say yes.
The students all were able to partake in the procedure. Mind you, this was an uncomfortable area as it was right by my privates. The procedure was quick and was done right in the bed. I wasn’t 58
too thrilled with my experience with that group. I felt more like a test dummy rather than a patient. The following day, the same number of people from the infectious disease team were popping in and out of my room. I started to become aggravated by multiple people doing the same exact analysis. When the attending physician arrived this time, he wanted to do another biopsy! This time, they wanted a sample from the two spots on my face. I couldn’t maintain my composure this time. I started to cry in front of the group.
It was one of the first times I let myself express my true emotions in front of the team. “I’m just not having a good time,” I said to them. The attending physician did the right thing and had the students step out while he performed the biopsy. I really did feel like a test dummy. I was being poked and picked at as if I wasn’t a human with thoughts and emotions. My self-esteem was damaged, and I started to view myself in a different light. Just as I had during my first fight with cancer, I viewed myself as inferior to those around me because of my sickness. I tried to convince myself that because I was weak and vulnerable, people felt that they could poke at me like I wouldn’t care. In reality, they were just trying to help me get better. But, with my fragmented mind, I saw them trying to harm me.
I told the oncology team that I no longer wanted to interact with the infectious disease team. If they ever needed to communicate anything to me, they should tell oncology and then the message could be relayed to me. It was a selfish act made by a version of me that I am not proud of. I was under duress, and I started taking it out on other people.
Feeling like a test subject rather than a human being that day made me come to an important recognition about healthcare. Many providers could make a patient feel like a patient, but few can make a patient feel like a person. I realized how essential it is to connect with your patients. Not to just get the physical exams, lab values, and other subjective data. But to understand who the patient is and why it's important to help get them back to being who they are meant to be.
The third wall of that hospital stay was trying to regain my self-esteem and get myself out of the hole I dug myself. Physically, I felt exhausted. My body kept begging for more rest and sleep. Mentally, 59
I was having difficulty suppressing anxiety. The Superbowl was on while I was in the hospital. Most people would have parties with food, drinks, and the gambler who promises they have “the lock” for the game. For my celebration, I sat in my hospital room by myself with all of the lights off. I probably had some goldfish as my celebratory feast.
I still had about two weeks in there and I was running out of ideas to help myself out. The events that unfolded during that hospital stay gave me anxiety that wouldn’t go away. I tried walking around the floor listening to music to keep my mind off of everything, but it kept lingering around. I couldn’t think clearly. It was as if something else was control ing me. I wasn’t in charge. When the anxiety attempted to consume me, I decided I would do the only thing that humans have to do at all hours of the day…Just breathe.
I already felt overstimulated but yet I tried blasting music to calm myself down thinking it would help. I thought of how the end of the hospital stay felt like a lifetime away. The anxiety pushed me toward negative thoughts all day long. I felt fidgety and had trouble sitting still. The only thing I really had to do was breathe. So, that’s all I started to focus my mind on. I closed my eyes and envisioned my chest rising and falling with each breath. Breathe in, breathe out. I did this for about a minute each time. “Now, what is one thing that I should do right now,” I said to myself.
I didn’t try to juggle doing multiple tasks at once. I did one task at a time and gave it my full attention. I made sure that while I was doing something, that was all I focused on. If I was walking the halls, I focused on putting one foot in front of the other. If I was eating a meal, I focused on finishing all the food on my plate. If I was listening to music in my room, I sat back and enjoyed the music. If a nurse brought in a few pills for me to take, I focused on getting the pills down as soon as possible. I didn’t scroll through my phone while walking in the hal s or eat with an Xbox controller in my hand.
Multi-tasking is only beneficial if both tasks are done for a common goal. Otherwise, neither task is receiving your ful undivided attention. I didn’t have many chores to do in the hospital, but focusing on just one chore at a time eased my anxiety. If I ever felt flustered, I took a step back from 60
what I was doing to take my breaths. I took a moment to recalibrate, and then I stepped back into whatever I had to do. In doing so, one large obstacle of making it out of the hospital was turned into a series of small steps. Each of which commanded my undivided attention, so I knew each was completed correctly.
My new breathing technique softened my anxiety and allowed me to knock down the third wall.
As my mental health recovered, so did my blood counts. That meant discharge day was right around the corner! With slow progression, I came to a level where I ate full meals and walked several miles each day to keep in shape. When the attending oncologist came into my room, I always asked about the bone marrow biopsy results from January. I was dying to know if any significant changes occurred in the genetics.
When more information finally became available, the genetic testing came back to be just about the same as last time. That was phenomenal news for me. It meant that the prior cycles of chemotherapy weren’t able to fully wipe out all of the cancer cells, but the cancer cells have not redesigned themselves. It was a different animal but the same beast (I hope you have seen that Kobe Bryant commercial to understand the reference). I still had so many questions that I wanted answers to. I would just have to wait until after discharge to have that conversation with my oncologist.
What I did not realize I was doing with my breathing techniques was that I started to venture into the concept of meditation. It is a practice that I now have incorporated into almost a daily practice of mine. I know there is a certain stigma around mediation that it is only for monks, hippies, or other unique groups of people. But I think all people should take time out of their day to be mindful of themselves and their surroundings. As people, we take time to feed ourselves, hydrate ourselves, exercise our bodies, and socialize with other human beings. But we don’t always take time to be in the present moment.
Meditation has allowed me to calm myself down when feeling stressed or anxious. It has opened my perspective to the thoughts I experience throughout the day to notice how I am truly feeling.
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Taking just a few minutes to focus on the rise and fall of our chest could do wonders for us. To slow down the world around us and realign ourselves for just a moment. Do this when you aren’t stressed as well. Some days, it makes me think about all of the people in my life I am grateful for and it sparks a conversation with them. Give yourself a little time each day and just breathe. Allow yourself to “be where your feet are.”
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I made it out of the hospital in one piece. I had experienced my lowest of lows that month, but I found a way to dig deep and persevere. By taking it one day at a time, the fourth wall fell. As I had many times before, I took the walk down the long hallway from the Rhodes building into the main lobby.
The cold winter air chilled my bald head as I left the building. Being bald in the summer wasn’t nearly as bad as in the winter. In the winter, having a hat on was a must.
I returned home and it was back to the same routine of nursing visits twice a week, daily saline flushes into the PICC line, medications to be taken daily, and doctor’s visits weekly. I had a home nurse named Janet who took care of me throughout the majority of my experience with the home nursing service. She loved me like I was her own. Madison and I greatly appreciated how much effort she showed in my care. It didn’t go unnoticed.
With my first at-home visit since my relapse, she was excited to see me again and asked how I was doing. Unbeknownst to her, it wasn’t such a happy experience to be back under her care. I had to let her know that I experienced a relapse which is why I needed the service again. I told her that the plan was to get a stem cell transplant set up for me in the near future. She said she worked with many patients that go through the transplant process and she was confident I would do great through it all.
I will always appreciate Janet. She is a prime example of someone doing everything in their power to give me the best support possible. It was such a small act of kindness each visit by her, but it left such a big smile on my face. Small acts of kindness could leave a large impact on someone’s life, 63
especially in a time of need. I will never be able to forget Janet and the role she played in my treatment and recovery.
My highly anticipated doctor’s appointment arrived. I had many questions to ask about my relapse. Some questions that I wasn’t sure if I wanted to know the answer to. It was my first time in the doctor’s office since my bone marrow biopsy revealed my relapse. Just like at that previous appointment, I felt nervous. I waited a whole month to have a sit-down conversation with my doctor. I had my questions lined up in my head. What I feared were his answers to my questions. I knew I had to ask them or else they would perpetuate inside my mind.
My name was called, I got my vital signs taken, and I was brought to the exam room. I sat and waited patiently for my doctor to enter the room. This conversation was critical to me. My doctor entered the room, and we talked about what went down during my hospital admission. I told him how brutal it was to end up back in the hospital after experiencing normal life again. I was given an overview of the plan for transplant. He informed me that a request for a match was already sent out. Until then, a plan couldn’t be formulated quite yet. Once all the logistics of the next few weeks were discussed, it was my time for questions.
“Why did a relapse happen to me? Did I do something wrong?”
My doctor responded by saying there was nothing I did wrong. The treatment just didn’t work.
After my first battle with cancer, I asked my doctor about the chances of this ever coming back. He told me that there was about a 60-70% chance that those chemotherapy cycles cured me. I liked those chances, but the odds went against me.
“We real y thought those treatments would have cured you. As much as we would like everyone to be cured after those first few cycles, you just happened to be in that smaller percentage that it didn’t.”
I then asked, “How long am I going to live?”
“You can certainly live a long life, as long as we can keep the leukemia away.”
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My final question was, “Since this came back much earlier than expected, are you worried?”
He explained using a hammer analogy. He said something along the lines of, “If we only had one hammer to hit this with, then yes, I would be worried. But we have other hammers to work with. There are other concoctions of chemotherapy we can use along with stem cell transplantation. I still expect the same chances of a cure as before.”
The conversation we had lasted almost forty-five minutes. It was a rollercoaster of relief, joy, fright, worry, and most importantly, ambition. What I took away from that conversation is that failure will always be a part of life. Whether or not the odds are in our favor, there is always that slim chance.
Even in a situation that was completely beyond my control, I still failed. My body failed to keep the demons out of me. I hated that I had no way of impacting the success of the treatment. I wished my doctor told me there was a legitimate reason why it failed that could have been in my control. If you fail an exam, it could be because you didn’t study hard enough. If you got fired from a job, it could be because you weren’t efficient enough. But my body failing to defeat cancer, that was all out of my control.
I kept beating myself up in the hospital thinking it was something I did wrong. I should have eaten better! I should have exercised more! How can I overcome a failure if I did everything possible to prevent it from happening?
Failure doesn’t insist you stop trying. Failure insists you come back even hungrier, more ambitious, and relentless to achieve your goal. Before I left the doctor’s office, I made sure to leave one last remark.
“As soon as you feel comfortable putting me back in the hospital for the transplant, make sure you do it right away. I can handle it. I am ready to put an end to this.”
I once thought that the relapse meant this was it for me. I thought my life here on Earth was dwindling away. The failure of the treatment was the toughest failure I had to face in my life. But you cannot achieve success without failure. “Success is going from failure to failure without losing your 65
enthusiasm,” said Winston Churchil . I had to reflect on how badly I wanted to get better just a few months ago. I lost my ambition to fight back. But the conversation with my doctor sparked hope for me that one day I would make it back to being the man I was supposed to be.
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The search for a donor was in progress. Two potential perfect matches for me lived overseas in Europe. It is unbelievable to think that in the whole Be The Match registry, there seemed to be only two perfect matches for me. It comes to show how difficult it could be to find a donor. I highly encourage you all to consider signing up for the registry. To join the registry, all you have to do is go onto the Be The Match website and order a test kit for an at-home cheek swab. It is free to register. As I alluded to before, it is one of those small acts of kindness that could mean the world to someone in their time of need. Before I get into detail about my stem cell transplant, I must acknowledge that the only reason why I am alive today is because of a complete stranger. The gratitude that I have towards those who choose to donate their bone marrow cells for others is beyond compare. Always choose to be kind to others. You never know who could end up saving your life one day.
Trying to track down a person who lives thousands of miles away in a foreign country isn't straightforward. Getting the transplant underway was an urgent matter. Unfortunately, those potential donors weren’t always aware of the urgency of the situation. To buy us more time until a donor could be arranged, I had to be admitted to the hospital for an additional cycle of chemotherapy. It was just a few days, but my stomach wasn’t too happy about it. The only memory I have from that hospital stay was vomiting on my bed one night. If that is all I remember, it must not have been so bad. In comparison to my last admission, it was a walk in the park.
At my next doctor’s appointment, my doctor said that the one potential match went to a clinic for further evaluation, and he ended up not being a perfect match for me. I don’t believe they were hearing anything from the other prospect, so the discussion began about a cord blood donation. Getting 67
a donation from another living person is usually the first option which is why we were waiting on those donors from overseas. If a patient has any siblings, they are tested first. My brother tested to see if he could donate to me, but he unfortunately was not a good match.
Since we were unable to get set up with another living donor, cord blood was an option. Cord blood is referring to the umbilical cord. When giving birth, the umbilical cord between the mother and child is often thrown away. What many people aren’t aware of is that the stem cells in the umbilical cord can be used for patients with various cancers such as leukemias and lymphomas. Those donations are then kept in a freezer until it is needed. So, to all the women out there, please consider donating your umbilical cord blood if you choose to have children. You can save a life with that decision.
Picture stem cells as a starting kit. The starting kit could be transformed into specific types of cells with specific functions. In the case of leukemia, the bone marrow is damaged and is not able to create blood cells correctly. By infusing someone else’s stem cells, those cells are able to make their way into the bone marrow and create the cells that the recipient can no longer create on their own.
This saves the patient by giving them a new means to produce healthy blood cells. My doctor said there was a cord blood donation that was a good match for me. Finding a “good match” involves the genetic testing between the recipient’s DNA and a donor’s DNA. The more similar the DNA is, the greater the chance of a successful transplant. The sad part is, if we had gone with the cord blood right from the jump, I wouldn't have needed that extra cycle of chemotherapy.
I made an effort to see as many of my friends as possible before going into the hospital. It felt like a “farewell tour.” I didn’t know when I would get to see any of them next, so I had to cherish those moments with them. A group of six of us went out to play a round of golf together. That day with that group of guys is a memory I will hold onto forever. We shared so many laughs, great conversations, and overall, just enjoyed each other’s company. It was a day that made me feel like nothing was wrong with me at all. I was just like everyone else that day. All I needed were my friends by my side.
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After golf, we had dinner together. We ate outside under a giant tent that was set-up due to COVID limiting the amount of people that could eat indoors together. It was a large group of people, music was playing, and life felt like it was supposed to. I lived in the moment that day. I knew that it would only be a matter of time until doing something like playing golf and having dinner with friends would be a challenge for me. I was going to miss days like that golf outing.
There was a great deal of information in preparation for the transplant. In addition to traditional chemotherapy, I would be receiving radiation treatment. Radiation treatment was foreign to me. I didn’t know or understand too much about it. It was the fear of the unknown.
I met with a radiation oncologist who spoke to me regarding the side effects of radiation treatment. I was given a laundry list of both short-term and long-term toxicities. Hair loss throughout my whole body, infertility, skin reactions, extreme fatigue that doesn’t get better with rest, nausea, mouth sores, kidney toxicity, heart toxicity, lung toxicity, and even different cancers later down the road.
It was an intimidating list. The doctor added, “Wel , you may not ever be able to run a mile as fast as you used to because of the potential scarring of your lungs.” It’s not like I was dying to run a mile as soon as I finished the transplant, but I didn’t appreciate the doubt that was already being placed on me.
Just as my body had recovered from the months of previous chemotherapy treatments, I was about to face a much more grueling treatment regimen. I knew I needed to be in the best form of myself to be able to withstand the side effects. For the weeks leading up to my admission, I ate like a pig. I made it my mission to weigh as much as possible because it was inevitable that I would be losing quite a few pounds during the process of transplant. I tried convincing Madison that after a while I started to get love handles by my waist meaning I may have put on a little too much weight.
The first thing I did each morning was stretch. With the sedentary lifestyle of a hospitalized patient, I had to be flexible going into the admission. Lying in a bed all day creates stiffness in the joints 69
and muscles especially. I held each stretch for thirty seconds. I stretched my hamstrings, groin, lower back, shoulders, and quadriceps.
The mental breakdowns I encountered during my relapse admission haunted me. The feeling of hopelessness crept into my mind because I knew another long hospital stay was coming up. I had to practice controlling myself in those moments. I triggered anxiety within myself and tried my best to learn how to manage those feelings. It was one skill being able to return to my home base from a spike of anxiety while I sat comfortably at home. But it would be a whole different ball game to be able to do that within those four walls. All I needed to do in a time of desperation was breathe in, and breathe out.
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The countdown to the admission was becoming surreal. All of my baseline heart and lung function tests were completed. I met with many of the people who would be involved in the transplant process. Myself, my mom, my brother, and Madison all attended a virtual introduction led by transplant nurses. There, I was given the pre-transplant treatment schedule which is otherwise known as the conditioning regimen. I was scheduled to receive three days’ worth of chemotherapy and four days’
worth of radiation. How about that for a rough week at work?
Immediately after the last day of radiation treatment, I would be given the stem cell transfusion which was going to be administered over about an hour and a half. The radiation would be given twice daily. One session around five or six in the morning and again in the early afternoon. I was warned that the majority of the side effects that I would struggle with would most likely come from the radiation.
As for the chemotherapy, I would be receiving fludarabine which was a drug that I experienced before and another drug called cyclophosphamide that I was yet to come across. The schedule was given in a format centered around the stem cell transfusion which was referred to as day zero. Each day leading up to the transfusion began with a minus sign followed by the number of days until day zero.
As an example, day -3 meant there were three more days until the big day. Each day after the transfusion began with a plus sign followed by the number of days after day zero. You get the idea.
The days leading up to the transplant had a schedule to follow and the days after the transplant would be a lengthy recovery.
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Diligent personal hygiene was emphasized constantly. With my immune system being severely compromised during the transplant recovery period, I had to follow an even more strict diet than before for a few months after the transplant. Even the ice chips from the hospital ice machine were potentially dangerous for me. That’s how at risk I was for infection.
The nurses recommended buying a brand-new pair of shoes to be worn during the admission.
Clean clothes were to be brought from home and washed daily. When I would return home from the hospital, I would not be allowed to have any take-out food for at least one hundred days after day zero.
This would be done to prevent any contamination in the food that I ate. Since we weren’t the ones who would be preparing the food, we couldn’t be certain it was made in sanitary conditions. Everything would have to be made at home. All vegetables would have to be thoroughly cleaned, all meats cooked well done, and all dairy products had to be pasteurized.
I prepared for my transplant admission like it was the last thing I would ever do in my life.
Physically, I put on weight to make myself heavy and stretched daily so I was flexible. Mentally, I was learning the skill of pulling myself out of anxiety-filled episodes. I knew the conditioning schedule like the back of my hand. All of the drinks and snacks that I could possibly imagine to help my body power through were packed and ready to go. My parents helped me carry my overfilled bags to the car. Before I could be admitted to the hospital, I had to stop into interventional radiology to get yet another central line placed in me.
This central line was placed into my chest, and it also connected to the large vein leading to my heart. Luckily, that line would only be in place for the hospital admission and would be removed before going home. The procedure was more invasive than my PICC line placement. Since the incision was made in my chest and lower neck, I was placed under light sedation. They used the term “twilight anesthesia.” Even though I hated having it in my arm, I became well acquainted with my PICC line.
However, that didn’t mean I welcomed the idea of having another line placed in me too.
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I was taken back to the pre-procedure room where I put on a hospital gown with my right arm sticking out of it. As I sat in the bed waiting to get wheeled back to the procedure room, I ran to the bathroom quickly. They told me I wouldn’t feel much during the procedure, but I stil felt restless and had to get some of that nervous urine out of me.
I received an infusion of fentanyl and midazolam for the procedure. Being a pharmacy nerd, I knew this was some potent stuff. The fentanyl infusion began a few minutes before the initial incision.
Two incisions had to be made. The initial incision was made just under the right side of my neck. The second was made towards the upper right-hand corner of my chest. After a few minutes, I remember the nurse asking,
“Are you feeling it yet?”
“Uh, no. I don’t think so,” I said even though I clearly was feeling out of it.
“Wel , just give it a few minutes. I'm sure you will be feeling something soon.”
Just a few minutes did the trick and then some. I faded in and out of consciousness for the rest of the procedure. I was in a vivid dream one second and the next I was completely aware of what was going on. Despite both the fentanyl for pain and midazolam as a sedative, I still remember feeling discomfort with the incision in my chest. Before I knew it, the catheter was in place, and I laid on the bed high as hell. I was wheeled back out to the pre-procedure waiting area and put back on my clothes.
Once I felt coherent enough to be up on my feet, I went out to meet up with my parents. I had time for one last meal before saying goodbye to the outside world. There was a stir fry food truck by the hospital, and I decided that would be it. If only I knew that the steak bowl I had that day would be the last enjoyable meal that I would have for months to come.
My admission date was April 21, 2021. Otherwise known as day -9. Nothing was planned for the day once I was admitted. It was supposed to be a “housekeeping day” to get settled in and ready for what was to come. I spent the first hour unpacking my belongings and rearranging the room to my liking. I brought my Xbox with me to play video games and watch TV shows. As the effects of fentanyl 73
started to wear off, my chest and neck were in excruciating pain. I couldn’t move my right arm without wincing. I couldn’t imagine how painful the procedure would have been without fentanyl if that was how much I was hurting hours after the matter.
Day -8 marked the beginning of my conditioning regimen. Fludarabine was given on days -8
through -6 for a total of three doses. The first day went by with flying colors. I was able to eat and hydrate well both before and after the infusion. I got a few laps in on the floor to try and prevent any stomach cramping.
On day -7 I started cyclophosphamide. I sat and played Xbox while the infusion was running. It was late in the evening, and I had all of the lights off. Not even thirty minutes into the infusion, my head felt incredibly heavy. Oh, man. This isn’t going to be good. My stomach turned and I shifted into a hangover-like state within minutes. I paused playing NBA 2K on Xbox because I started feeling motion sick and waited for the feeling to pass.
My nurse brought in some tablets for me to take and I let her know that I wasn’t feeling so hot from the drug. As I tried taking one of my pills, I vomited. I closed my eyes and took some deep breaths.
My head felt like it could have exploded. It was time to buckle down and get ready. This was about to be a bumpy ride.
From the beginning until the end, the transplant was a true test of my character. Just three days into the admission, I was suffering. There were no time-outs. After vomiting several times on day -7, I had to wake up and do it all over again for days -6 and -5. The nausea I felt from cyclophosphamide was remarkable. One of my favorite ways to pass time in the hospital was to play NBA on Xbox. But after that first dose, my brain associated the video game with cyclophosphamide and I felt the urge to vomit whenever I saw the logo on the console. For reference about how serious I am about this, I received cyclophosphamide in April. I did not pick up a controller to play NBA until December of that year.
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In comparison to the cyclophosphamide, fludarabine felt easy. The chemotherapy days went by quickly which meant step one of the process was already complete. Radiation treatment was what I feared. On day -4 at roughly five in the morning, I was awoken by a nurse to get me out of bed to head over for radiation treatment. I didn’t mind the ride over to the radiation treatment facility. It was over in the Abramson Cancer Center which is where I went for my doctor’s appointments and infusions.
Patient transport pushed me over on a hospital bed which took ten to fifteen minutes to get there. Each session was a field trip for me. Aside from that, I was never allowed to leave the hospital floor.
The patient transport workers who took me over to radiation treatments were some of the coolest dudes. I slept most of the commute for the morning sessions. But in the afternoon, we would always just shoot the shit on the way over. Everyone in the hospital has the chance to impact a patient’s life during a hospital admission. The patient transport workers may not have been directly involved in the decision-making of my treatment, but they sure did make me smile on tough days. I didn’t have many enjoyable conversations with other people during my transplant stay. Most healthcare workers just asked about how nauseous I was, if I was having diarrhea, and how I was sleeping. I had a good, genuine conversation each trip with those guys. I wish I had the opportunity to thank them for taking the time to talk with me. To the fellas who hung out with me during my radiation trips, thank you guys so much.
I arrived at the radiation center in the waiting area. I was placed in a quiet room until it was time for treatment. The nurses got me water and checked in on me for anything I needed while I waited.
When it was time, I was taken around the corner to one of the “treatment bays” as they were referred to. Each treatment bay had picture frames on the wall lit up with different photos of nature inside. The pictures on the wall of my treatment bay were palm trees on the beach. It gave the il usion of a “warm welcome” one could say.
I was welcomed by a nurse who verified my date of birth and asked how I was doing that day.
The radiation oncology team had some of the most caring people I have ever met in my life. They didn’t 75
make radiation treatment seem like an intimidating time of the day. Each time I came over, they asked what type of music I wanted to listen to, and they played it over the computer speaker during the treatment.
A radiation treatment session was about thirty minutes long. I laid with my chest facing toward the lens for the first fifteen minutes and with my back facing for the remaining half. I went through four days of radiation for a total of eight sessions. Each time, I was welcomed with a familiar face. They had the music I liked playing before I even arrived. One afternoon session I remember all of us bopping our heads to some music while everything was getting set up. They were the best over at radiation oncology. I am so grateful that I was blessed to have that group of people taking care of me.
The radiation machine was massive. I envisioned the room to be the size of a bedroom. Instead, the room had to be close to eight hundred square feet to fit that machine in there. I was positioned on a small bench that was across the room from the radiation lens. My arms were crossed touching my opposite shoulder with my opposite hand. My knees were bent with my chest facing the machine. The team gabbed with me while they got everything set up. When it was time to turn on the radiation, everyone would flee the room and make sure the door was shut. The lights dimmed and it was just me and beams of radiation ready to rip right through my body.
With how toxic radiation therapy is, you would think that when the machine turned on a giant beam would shoot at my body and it would be painful. But when the machine started, it was a measly light that turned on. It looked similar to a lightbulb shining bright behind a camera lens. I didn’t feel anything. I laid there staring into the light.
Throughout the conditioning treatment, I manifested the success of the transplant. Before each dose of chemotherapy or radiation, I envisioned my immune system killing the remaining cancer cells.
The cells were like human beings inside of my imagination. It was all out warfare going on inside of my bone marrow. Screaming, fighting, and bloodshed. I imagined the treatment wiping out all of the cancer 76
cells but also killing my own immune system. With the cancer dying inside of me, a part of me was dying too.
As I got towards the end of the radiation treatment days, I felt noticeably tired. The fatigue that doesn’t go away with rest was a real phenomenon. I ended up falling asleep during most of my morning sessions. My hand was taped to my shoulder to make sure my arm stayed in the right position while I slept. I remember the team leaving the room for the radiation to start but in a blink of an eye, I was already facing the wall for the second half of the session. Once I got wheeled back to my hospital room, I fell asleep again in my bed.
As I was being taken over for one last day of radiation, I realized that what I was going through was much bigger than just me. I looked around at some of the other patients preparing for radiation. I saw a young boy who must have been about twelve years old. He wore an oversized baseball cap on his head with hairless eyebrows peeking out underneath. He wasn’t at home playing with his buddies outside like most other kids did growing up. Instead, he was being pushed around in his wheelchair getting ready for more toxic radiation being projected his way.
I looked further down the hallway and saw an elderly man. He walked with a limp and relied heavily on his cane to hold him up as he followed the nurse in front of him. As much as I felt alone, I wasn’t the only one going through that. Cancer doesn’t discriminate against anyone. We all had something in common in that waiting room. We desperately needed treatment to save our lives. No matter how similar or different, we all had lives to live before we were forced into that situation. I thought about that young boy the rest of the day. Everyone close to me thought my life was tough and unfair for having to go through all that I did. But after seeing that elderly man and that little boy, who was I to think I had it tough?
I realized that no matter how difficult you have it, somebody always has it worse. When I was that boy’s age, the hardest things I would have to go through would be not getting a video game I 77
wanted, having to eat my vegetables, or not being allowed to go hang out with my friends on a school night. I know for a fact that boy would have loved to have a “hard day” like I did as a twelve-year-old.
The elderly gentleman who most likely needed his cane even before his treatment had to put his already weakened body through more harm. Even during those difficult conditioning days of treatment, I was able to express gratitude. Not for what happened to me, but when it happened to me.
I easily could have been the child who missed out on years’ worth of memories with his best friends growing up because of cancer. I could have been the grandfather who was not as healthy as he once was and now needed treatment that would further deteriorate his health. I was diagnosed during the years of my prime health. I could not have lived a better childhood and I hope to live as long as the elderly gentleman I saw that day. So, then I asked myself the question, “Who am I to complain right now?”
Take time to express to yourself everything you are grateful for in life. Not just in days of peace and love, but in days of chaos and sorrow along with it. As said by Marcus Aurelius, “When you arise in the morning, think of what a privilege it is to be alive - to breathe, to think, to enjoy, to love.”
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The type of pre-transplant conditioning treatment regimen I received is called myeloablative conditioning. This meant the entirety of my bone marrow stem cells would be wiped out from the treatment. The stem cell infusion after the conditioning would “rescue” my bone marrow and completely take over the production of blood cells in my body. When I finished all doses of chemotherapy and radiation, I was extremely vulnerable to infections.
On day -1 after receiving my final radiation session, I was moved to a separate holding room temporarily to allow the room I was staying in to be thoroughly cleaned. Any opened containers of food or drinks had to be emptied. Everything from that point forward had to be brand new. All sheets, clothes, and objects in my room were washed or disinfected. Once my room was available again, I had to hop right into the shower to make sure I was cleaned up myself.
It was a great milestone in that hospital stay to make it through the conditioning treatment. I vomited several times leading into the transplant and physically I felt fatigued. But everything considered, I was doing well. I was proud of myself for how I handled those first few days. The team in the hospital told me getting through the treatment was a big first step in the process. Now, the stem cell infusion was just hours away. A new chance at life was waiting for me.
Jesus answered him, “Truly, truly, I say to you, unless one is born again he cannot see the kingdom of God.” - John 3:3
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I read that Bible verse to myself hundreds of times on day zero. In the blood cancer community, day zero is another birthday. On that day, patients who have been impacted by these horrible illnesses may have a new chance at life. A rebirth. All I needed was for God to give me the opportunity. I would be able to take it from there. I would be able to handle anything else I would be challenged with. I just needed God’s blessing to let me get back out into the real world again.
I woke up bright and early that morning. I wasn’t able to get much sleep. I noticed my legs began to feel incredibly sore to the extent that it was painful. I sat quietly in my bed and prayed until it was time for the infusion. I remember the nurse carrying the stem cell bag like it was yesterday. She carried a small IV bag containing the cells that could cure me. I tensely watched her set up the infusion and I was terrified that somehow the bag would burst open. The bag was hung, and it was time for the infusion to begin. In the room with me was the nurse, the nurse practitioner, and my mom. I had to be observed for the first thirty minutes in case I had any infusion reactions to the transplanted blood.
I didn’t say much during the infusion. I envisioned a successful transplant repeatedly in my head. I requested that everyone in the room stayed quiet during the beginning of the transfusion. I needed peace to focus on my prayers.
I watched the blood travel from the bag and into my arm. I was watching my savior come to relieve me from my suffering. It is tough to put into words the feeling I felt during the transplant. All of the blood that is now in my body is from another person. Without that blood, there is no me. Knowing that weighed heavily on me. I knew that the new opportunity I was about to be blessed with was one I couldn’t mess up. I needed to give life everything I had to offer. If I wasn’t going to give my one hundred percent effort each and every day, I might as well be put back in that hospital bed.
The transplant was complete. Wow, was it that easy? What I didn’t understand was how intense the regimen was that I just went through the week before. My bone marrow was completely destroyed to allow enough space for the stem cells. This was incomparable to the other regimens. All of my preparation for the wear and tear on my body and mind would be tested.
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In moments where we feel rattled and out of control of the situation, we only can fall back on our preparation for those times. I learned from the recovery of the transplant that you could put all of the preparation, time, effort, and energy into something and still not get the results you are working towards for a long time. I pictured the recovery to be similar to my previous rounds of chemotherapy.
The blood cell counts would recover in about a month and all would be well again.
It is not about how strong you could be when you are set up for success. It is about how strong you could be when all odds are against you. I asked the nurse practitioner, “With the conditioning treatment over, I am past the toughest part already, right?” The question was on par with how I viewed most of my treatments…I underestimated them each time.
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There were bad days, terrible days, and horrific days during the recovery period in the hospital.
The pain in my legs continued to progress and it impacted my ability to stand and walk on my own. I had to take a few days’ worth of oxycodone to suppress the pain. The pressure of my legs resting on the surface of the bed was intolerable. I readjusted my bed to the shape of a chair to try and give my legs some freedom. The condition sounded very similar to restless leg syndrome. I constantly felt the urge to move my legs. Moving my legs around gave a temporary sense of relief. But the moment I rested my legs down on a bed or on top of one another, the unpleasant feeling quickly returned. My legs felt hot and radiated with pain specifically in my calf muscles. In a matter of a few days, I was confined to my bed. I no longer was up getting myself my own drinks or snacks from the fridge or walking on the hospital unit.
The nausea and loss of appetite caused by cyclophosphamide were built upon by the radiation treatment. The first few days after the transplant, I surprised both myself and some of the team by how much I was able to still eat. Madison brought me meals from home to heat up in the microwave. A couple of snacks from home helped me avoid the disgusting hospital food whenever possible.
As the days went by, I missed more meals. My portion sizes became smaller. My desire to put any pill, liquid, or food into my body was gone. I had to be placed under the care of a dietician to make sure my nutritional needs were being met daily. I had to begin writing down everything I ate each day to see if I was taking in enough calories. The list I compiled was miniscule. Cereal, chocolate milk, crackers, and a small plate of pasta was what my diet consisted of. The dietician decided I needed 82
parenteral nutrition just like I did during my diagnosis induction treatment. It seemed as though the majority of transplant patients were eventually placed on parenteral nutrition due to poor appetite.
Pills became my worst enemy. I struggled taking all of my medications. No matter if it was large or small, I gagged as soon as the tablet was put in my mouth. Around three in the afternoon, I was due for my posaconazole tablets. They were three long tablets that needed to be taken daily. The sight of the three tablets hitting my bed stand in the small pill cups brought in by the nurse was enough to evoke my gag reflex. I discussed my difficulty with the oral medications with the team, so the decision was made to put me on as many IV medications as possible.
I was attached to the IV pole at all hours of the day. Right before the transplant, I was started on an “anti-rejection” medication called tacrolimus. With a new immune system being transfused into me, the immune cells could recognize my body as a foreign entity and attack my own cells. This is known as graft vs host disease. The goal of using a medication like tacrolimus is to prevent the immune cells from attacking parts of my body such as my stomach, intestines, and skin which would cause discomfort. It was an important medication for me which was why it was constantly being transfused into me for most of the hospital stay.
You couldn’t imagine how frustrating it was to be attached to a pole for twenty-four hours a day for weeks. At times, I was attached to both my arm and my chest. Taking a shower was a hassle for me.
The IV pole sat outside the shower curtain as I tried to wash myself with two IV lines flopping all over the place. I was stuck with a shower head that had the worst water pressure that I have felt. It was one small trickle of water that gently fell onto me.
Showering was a daily activity that became increasingly frustrating for me to perform. The inconvenience of bathing myself coupled with my exhaustion led to me skip the shower altogether for longer than I should have. Where strict cleanliness was imposed, I secretly went eight days straight without taking a shower.
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Shivering underneath my blankets, I couldn’t stay warm. My temperature regulation was thrown off. The weather was warm outside, or so I was told, but the temperature of my room felt like an igloo.
People within the hospital encouraged patients to sit up in the chairs provided in the room instead of lying down in bed all day. But the cold leather seats on the recliner scared me away. I laid with a red blanket covering my legs, a blue blanket covering my upper body, and my head propped up on the bed with a pillow. I did this for hours upon hours each day.
Food made me want to vomit. Watching television made me feel dizzy. My body ached even though I did practically nothing all day. One day, I lightened up to the idea of going for a short walk in the hallways. If I wanted to leave the room, I had to “gown up” to protect myself from any bacteria, fungus, mold, or virus that could be out there. I laced up the disposable yellow gown with my IV lines sticking out. I held up the line coming from my chest so I didn’t trip over it while I walked. I slipped my hands into two blue gloves. Putting on the whole outfit while standing up was enough of a workout for me at that point in time.
Most of the time, I didn’t feel confident going for a walk on my own. I wanted someone there to walk with me in case I felt dizzy and needed a break. As I took my first few steps, I already felt the inclination to go back and lay on my bed. I hung over the IV pole like I was piggybacking onto a friend.
There was a chair off to the side of the hallway so I decided to sit down and rest. I was incredibly disappointed in myself for how small of a distance I was able to make it. I sat to catch my breath and looked at my yellow gown, blue gloves, and my skinny hairless legs. To think, I was able to run miles without feeling exhausted just a few short years ago. But yet, there I was. Huffing and puffing for air from doing only what? Standing up and taking less than ten steps down the hall. That was when I realized the recovery was going to be much harder than I thought.
I vomited so much that my stomach felt sore from my abdomen contracting so violently. I vomited at least twice a day for weeks on end. I hardly had anything in my stomach so most of the time I was dry heaving or dumping out fluids from my system. With how aggressive my body acted each 84
time I vomited, my face tensed up with each episode. After a few days, my eyes became black and blue. Keeping my eyes fully open caused pain. My vision was blurry. Instead of moving my eyes around freely, I had to move my head completely to see whatever I wanted to look at. The muscles around my eyes hurt all the time. I didn’t know it was possible for eyes to turn black and blue from vomiting.
I had diarrhea just about every day. With my body tensing up from vomiting frequently, sometimes, it would be coming out of the other end too. Let’s just say it was not a fun feeling. It was beyond my control. I couldn’t stop it even if I tried. I remember a time when I was vomiting for the third time of the day already in the morning. I tensed up so much that I had diarrhea right through my pants and onto the bed. I was so exhausted that instead of going to clean myself up and get changed, I laid back down on my bed. I had no willpower left to give.
It was difficult for me to accept that the recovery was going to take time. For some reason, I expected a quick and straightforward recovery process. Don’t get me wrong, I knew the treatment was going to make me feel sick. But what I was experiencing was far beyond what I anticipated. At that point, I wasn’t up for the chal enge. The first wall wasn’t broken down yet.
I don’t know what exactly defines what a human being is, but I wasn’t that during my transplant hospitalization. If I was, I did the bare minimum to maintain existence. I wasn’t entertaining any of my hobbies. I didn’t eat or drink much. I wasn’t physically active. I could hardly have clear thoughts. When I did have thoughts in my mind, they were rarely positive. My personal hygiene was obsolete. I showered only every few days. If I was able to shower two days in a row, it was because my mom or Madison talked me into it. I gagged each time I put a toothbrush in my mouth. I still remember the taste of the hospital toothpaste as I spit up into the clogged hospital sink. The team knew I was struggling and tried to intervene in any way possible.
One day when the team was getting ready to come in and see me, the doctor peeked her head in to see if I was awake. I turned my head over with my black and blue eyes and the look of defeat on my face.
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“You know what, we are just going to let you rest today, Ryan,” said the doctor. “We wil check back in with you tomorrow.”
It is tough to accept a challenge when you don’t know how long you wil be pushed before you conquer it. Just like I had to during my previous hospital stays, I needed to accept there was nothing that I could do to leave the hospital when I wanted to. I was in there for the long haul. It was better to accept that fact rather than to run from it every day. But yet, I struggled to do so.
I had a poor outlook on my life during that period. Time never felt so slow. I found myself staring at the clock watching the seconds and minutes tick by. I would reminisce about all of the great memories I have accumulated in my life. I needed reinforcement that life could be so good and that what I was going through was just a rough patch.
Life is not just the passing of time, but a collection of our experiences. What is important is the number of experiences we have and the quality of them. The present was incredibly difficult to tolerate.
The future was uncertain. But thinking about some of my memories with my family and friends managed to bring up my mood even just a tiny bit. The hope was to make it to a day that I would have the opportunity to create more memories with those that I love.
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A physical therapist stopped into my room. She was hoping to get me up and moving around in the hallways. The last time I tried walking, I only made it a few lousy steps outside of my door before plopping down in a chair. I put on my shoes, gown, and gloves to be able to exit my room. The physical therapist held the IV pole for me as I walked. When someone was there to walk with me, I was finally able to freely swing my arms. It was a simple joy that I was stripped of while in the hospital. Despite the assistance I received, I didn’t make it very far without wanting to stop. I made it to the other side of the floor this time and I pulled up a chair to look outside the window.
Almost a year ago, I sat at that same window and looked out at everyone going about their day.
Who would have thought that after all of those months of treatment that I would still end up in the same damn spot? I sure didn’t. I was fixated on the bench by the walkway again. That was a symbol of freedom for me. Being outside and taking a few minutes to relax on the bench to take in the refreshing air. When I was last outside, it was still that cool April weather in Pennsylvania. That day, it was starting to become the warm and sunny May that we all know and love. I couldn’t wait to get out there to rock a pair of shorts and a tee shirt.
One day, I would have a seat on that bench myself. Maybe, just maybe, I will see someone peeking out at me from the seventh floor of the Rhodes pavilion just like I was that day. I will know how lucky I am for having the freedom to sit on the bench. But only because of the time I had spent locked up on the hospital floor where I could only hope and dream of better days ahead.
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I was on a hefty amount of anti-nausea medication, and I believe some of the side effects of those drugs were affecting me mentally. Similar to how the one anti-nausea medication made me feel unbearably anxious back in the winter, I felt the anxiety begin to take over once again. I didn’t have control over the movements in my body. I felt jittery. My breathing techniques weren’t doing the trick for me this time. Whenever I tried to calm myself and take a few deep breaths, I tensed up and forgot about focusing on my chest moving up and down. I rubbed my hands on my bald head aggressively. I rocked back and forth on my bed. I scratched my forearms with my nails. I did anything possible to try and settle my mind.
After asking the team many times how long they anticipated it would take for my blood counts to recover, I kept getting the same answer. “It wil be at the very least, four to five weeks in here.” Even then, they were trying to be optimistic. I finally accepted the reality that I was going to stay in the hospital for a while. But the anxiety I was confronted with from the medications brought me to my second wall of the transplant stay. I couldn’t focus on anything else other than how disoriented I was feeling. I called my mom and Madison to see if either of them could find a way to calm me down. Without giving either of them enough time to speak their mind, I hung up the phone. I couldn’t formulate the thoughts to have a real conversation with them.
Finally, I decided that I would rather puke my brains out than to have my mental well-being even more compromised than it already was. I requested the team to discontinue a bunch of the medications I was taking for nausea. Instead, I started with a new medication called dronabinol. Dronabinol is a derivative of THC, the active ingredient in marijuana. The medication is approved for patients going through chemotherapy who experience uncontrolled nausea and vomiting with poor appetite. I fit that description perfectly. Oh, and I forgot to mention, dronabinol made me feel as high as a kite.
Only a drug like dronabinol could make laying in a hospital bed all day somewhat bearable. It took the edge off for me which is something I benefited from at the time. I ate a little more than I had before starting the drug which was also a bonus. Being high in the hospital was a weird dynamic. I 88
woke up one morning so high that I was afraid to interact with other people. Nurses stopped into my room to hang up my IV bags and I pretended to sleep when they came in.
While the team was preparing to do their rounds on me, I couldn’t help myself but to keep laughing about the dumbest thoughts. The last thing I wanted was to look like a clown in front of everyone. The team came in and did their usual check-up on me. It wasn’t long before I let the doctor know, “I’m not going to lie, I am pretty high right now.” The doctor got a laugh out of it. “Most people feel that when they first start the medication,” she responded.
The medication did stimulate my appetite and worked very well in that sense. Although, even with the added benefit of dronabinol, my caloric intake was well below where it needed to be. For breakfast, I had a few cheerios from the small packages provided in the hospital. Most of the time, I couldn’t make it through the whole pack. For reference, the whole container was only ninety calories.
Chocolate milk sat well enough in my stomach, depending on the day. A bottle was just over two hundred calories. However, the dairy didn’t always agree with me, and it led to worsening diarrhea.
As dronabinol surely had its benefits, it also had its downfalls. For one, I was high just about all day. Some may think, “Damn, Ryan! That sounds like you are living the dream!” The thoughts I was having bothered me. I felt like I couldn’t concentrate on anything. My attention span was little to nothing as my mind drifted away whenever I tried to focus. After a few days of taking dronabinol twice daily, I pulled the plug on it.
“For a future pharmacist, you don’t like being on medications, do you?” That was the response from the team as I asked them to stop taking it. I knew it was helping me from a physical standpoint but mentally I wasn’t enjoying the uncontrollable thoughts running through my head.