Have you ever wondered what goes through the head of someone when they are diagnosed with Cancer, or more specifically Acute Leukemia? Today I will finish the story telling it as candidly and honestly as I can. If you haven't read the first two parts they can be found at:
A Day that Will Live in Infamy - The Story of my Diagnosis Part 1.
A Second Day of Infamy - The Story of My Acute Leukemia Diagnosis Part 2
In today's edition we will continue my journey of being diagnosed with Acute Leukemia, and my examine the emotions and thoughts. This tells the story of the weekend leading up to the February 7 and the events of February 7th, my Third Day of Diagnosis.
Again, today's post is fairly long so grab a coffee or beverage, get comfortable, and enjoy!
Saturday morning we woke up a little more refreshed than the previous day. Unlike Thursday night, we both got a little sleep, although it wasn't a restful sleep. Amy's sleep was constantly being interrupted by my IV pump and her worry for me. Every time my IV pump beeped her heart raced, and if the nurses didn't respond quick enough, she was out into the hallway tracking one of them down to find out what was wrong. After her fifth trip, the nurse took the time to explain what alarms we should ignore and which ones should cause worry. I think this eased her anxiety a little, but each time the IV alarm went off I could see one of her eyes open until a nurse responded.
As for me, my night was dominated with my new reality and making peace with it. The quiet and solitude of the night brought my mind to life. It wasn't dominated with sadness or self pity as one might expect, it was flooded with curiosity. Curiosity of whether I would make it through this, what the treatments would be like, would I go through a lot of pain, and how would everything change me. When that many thoughts and scenarios are flying through your head, sleep does not come easily. To top everything off, the bed was absolutely terrible for sleeping on. It had a rubber liner directly under the sheets that I assume was there for easy cleanup in case some "fluids" spilled during the night. This extra "sheet" made the bed more of a sweat lodge than a bed, and by the morning I am pretty sure I could actually ring the sweat right out of my clothes.
The arrival of the laptops the previous night was a godsend when we woke up. More than half of the anxiety and stress from Friday was because we did not have easy access to information. Whenever we were told something new that we didn't know, all we wanted was to get on the internet and research it. We didn't have this luxury on Friday and finally this morning I planned to take advantage of the computer and having some time.
The past 48 hours had been a whirlwind where I had gone from my "normal" life to having Acute Leukemia, although I still didn't know what type so I planned on researching both. I wanted to be as prepared as possible so that when I found out the final verdict acceptance would be quick and no issue.
I still was not ready to actually verbalize to people the words, "Hey guess what, I have leukemia" so I left it up to Amy and my mom to start letting the people in our families know. For the time being I was keeping the news only in our families and close friends because I knew that when I was ready to tell everyone I needed a plan that would deliver the information as quickly and efficiently as possible.
Dr Hussein came by for an unexpected visit late Saturday morning. It wasn't long but still nice to see him. He was just to checking in to see how I was adjusting to the news, and reaffirmed that this was treatable disease that could be beaten. I liked him much more today, his bedside manner was much improved and he had a lot more empathy. I was started on a drug to start reducing my white blood cell count (remember I had 10x's the normal levels). He explained that by doing this it would alleviate some of the stress on my bone marrow so it could produce other cells. Your bone marrow has only a limited supply of resources. My platelet count was so low because my bone marrow was using all its resources to build the white blood cells.
When noon came, Amy went home again to grab something to eat, take care of our kitten Dora, and do some things around the apartment. Her mom and close friend came down to help her out, and provide her some much needed support. I encouraged her to take these opportunities as much as she could throughout my treatment because it allowed her time to relax and be supported by her close network.
When most people are around someone with cancer they are afraid to show any feelings that might be perceived as negative because they are so focused on keeping the cancer patient positive. These times away from me, allowed her some much needed "frightened" time I am sure, and allowed her support network allowed her to recharge her batteries while they propped her up with their positivity and strength.
While Amy was gone my family came for a visit. It was a really nice visit to have everyone there and I even got some treats, who knew life threatening illnesses were cause for presents :). I received some comfortable clothes for the hospital, some inspirational material.
At the beginning of the visit I still wasn't able to talk freely about my leukemia, so anytime the subject was broached I would get a little emotional. It wasn't that I couldn't be around people talking about it, which was actually nice; I just wasn't ready for the words and thoughts to flow freely from my mouth.
I received a magnet from my brother and his girlfriend that nearly sent me off the deep end of tears. I fought those suckers back like you wouldn't believe. The previous night I had decided I was done with tears towards my illness and it was time to accept it and move on, but the words on the magnet moved me so deeply that my pact almost went out the window. (A more in depth look at this is located in my post Just When the Caterpillar Thought the World Was Over.
Having my family there was very therapeutic for me. We spent most the time joking around about random things and discussing what I knew about my condition. By the end of the visit I was finally comfortable with the words, "I have leukemia".
I knew this meant it was time to call my closest friends and let them know. Although my mom and Amy were disseminating the information to everyone close to us, I wanted my friends to hear it directly from me.
I went for a short walk and found a nice quiet corner to make my phone calls. I kept each call short and asked each of them to keep it within their families. After the initial shock, they were all so supportive and wonderful. It was actually much easier to make the calls than I expected. Unfortunately I couldn't get through to one of my friends, but think this wasn't the type of thing you leave on an answering machine so I just left him a "Hey its Aaron, call me back when you get a chance" message.
Amy had a really nice surprise for me when she returned back to the hospital. She knew one of the hardest things for me was not being able to see Dora. Everything happened so abruptly that I didn't get to say goodbye to her, and for those that know me, know I adore that little thing.
Once I was over the initial shock I actually had a much more difficult time dealing with not being able to see Dora than I did with having leukemia. To surprise me Amy and had videotaped Dora doing all the things that I loved doing with her. It was one of the most thoughtful presents I ever received.
Unfortunately watching the video was too much for me at that moment and my pact was instantly broken. I broke completely down and couldn't watch it anymore. Even writing this today, one year later, it still brings a tear to my eye thinking about all the emotion I felt in that moment.
I loved seeing the videos of Dora but I knew I wouldn't see her for so long; it just made me miss her even more. As the days passed, I would watch a little bit more of each video until finally I could get through them all. At this point the videos became of vehicle of motivation rather than sadness. I knew I would fight to hell and back just so I could get home and play with Dora again.
After our attempt at watching the video, Amy and I played on our computer's a little bit more. The reason for my research is one that many of you would not guess; I was deciding which of the two types of acute leukemia I "wanted". This is on odd situation to be in, weighing the pros and cons of two terrible diseases and trying to decide which form you hoped for. In the end, I just made my peace with both, although I assumed I would be diagnosed with AML because it was most common in adults. After awhile, Amy and I had both researched too much and our brains hurt so we pulled our beds beside each other, curled up, watched a movie, and went to sleep.
We were starting to get comfortable with our new environment; little did we know a surprise was coming our way. The world of Cancer is very fickle, just as you begin to get comfortable with it; it usually throws you a curve ball.
As we were beginning to fall asleep, hospital alarm bells started going off and a code blue was announced for our wing. Before we knew it doctors and nurses were sprinting full out down the hallway past our door. Amy, being the curious one, stuck her head out the door only to find a family crying uncontrollably. I didn't have to move, I knew what the code blue meant; someone was passing away.
As she came back from the doorway I could tell this reality check was really bothering her, so I asked her to close the door, in the hopes of blocking out some of the alarms and crying. We discussed our new reality. We were part of a new world now where we were going to meet many people that might not make it. Although thinking like this was terribly sad, we needed to always stay focused on our "closed" room and not associate my situation with anyone else's. That night's closed room became a symbol and mantra for us for the remainder of my treatment.
The curve balls thrown along a cancer journey are excellent opportunities for growth and learning, and this was no different. The oncology wing in Trillium had many forms of cancer, so it was easy not to associate too much with their situations. Princess Margaret would be a whole other animal; there I would be surrounded by leukemia patients, so learning this lesson early on was paramount to the success of my treatment.
Sunday morning Amy woke up to an adrenaline pumping surprise. She rolled over only to see a hooded figure, sitting quietly in a dark corner of the room. Don't worry it wasn't the grim reaper; it was one of my close friends. He was that that I had to leave the voicemail the previous day. Thankfully he found the news out from his younger brother, whom I also called. He couldn't wait to talk to me, so he came straight from his night shift and waited patiently for us to wake up.
It was a very nice surprise to wake up to him and Amy chatting. He didn't stay long because he had to go home to sleep but we made plans for him to come back later that day with his brother to watch the super bowl.
Shortly after he left, Dr Hussein came by for another visit. Today's visit wasn't just to say hello though, this time he brought some news with him. He told me that he had been reviewing my tests and he was almost positive I had Acute Lymphoblastic Leukemia (ALL). I can't tell you the relief it was to finally have some of the ambiguity being lifted from my situation. It was really exhausting researching two potential diseases, so to finally have some direction was such a relief.
Going through something like this you quickly learn that lots of research is not always the best thing. If I could pass along one piece of advice, once you learn about your disease just stop there. Once you get into statistics, you have gone too far.
The problem is statistics are very addictive to look at but they are terrible for your mental well being because they depressing. Like most Cancers, Leukemia does not have very great statistics. Thankfully all the statistics are related to the relapse of the disease rather than death. Leukemia is a form of cancer that doesn’t actually kill you; it weakens your body until it can’t protect itself any longer.
My saving grace with looking at the statistics was I was in a very rare age group to get leukemia. ALL mainly afflicts children while AML is mainly found in older people (average age 60). Since not many people my age actually get leukemia, once I read them I realized it was basically pointless and I stopped looking at them
While I waited for the Super bowl I started reading one of the presents I received, Lance Armstrong's book “It's Not About The Bike”. I became so wrapped up in this book, I read it all day. It was so refreshing to read someone else’s thoughts as they went through the cancer experience.
I realized that many of the thoughts and feelings were identical to his. We shared the same hope in the early days that the cancer was a mistake right up to the hated of the “sweat lodge” bed. This brought about a feeling of connection I can’t describe. I realized I was not alone going through this battle and that most cancer patients all go through the same thing.
Reading about his fighting spirit, ignited one within me. From that moment forward, my body and mind agreed that we were going to make this leukemia sorry it ever chose me for its assault; this was one battle it was going to lose miserably.
Amy went home for the Super bowl to have her own "Non-Super bowl" party, while my parents and two friends came to watch it with me. It ended up being a great game. We had wings and pizza, and were very happy to see the Saints win.
Monday I awoke up with excitement in my step. You wouldn't think that going to receive a potential "death sentence" would excite you, but I had already moved on past the “worrying about dying” stage to the “I am going to fight this” stage and I was ready to begin the battle.
Learning the identity of my assailant and plan of attack wasn’t the only thing that excited me though; this would be my first time in the back of an ambulance. Again not most people’s source of excitement, but I figured as long as the lights and sirens weren't flashing it was a pretty good way to travel.
The ride to in Toronto was actually a lot of fun. My parents followed in their car behind the ambulance while Amy and I rode in the back of the "bus". I was right for my excitement, travelling in an ambulance is the way to go. First off, you know if anything was to go wrong there is someone there to fix it. But the best part is, while everyone else is stressing out in the morning rush hour traffic into Toronto, I was lying down and relaxing. After that trip I am convinced I need to find a way to commute lying down, there is just so much less stress; a couple million more in the bank account will do the trick I think J
In addition to the great form of travel, the paramedic was a great travelling partner. Halfway through the trip he was telling us his whole story. Turns out he was a cancer survivor and when he beat the disease he bought his dream boat. Now his dream was to one day live on the boat. Such inspired dreaming really helped keep my spirits up knowing the road I still had to travel. My mind would once in awhile slip into a deep trance of wondering what the day would bring, but Amy and the paramedic did an excellent job of cracking jokes and keeping me engaged in the conversation.
When we arrived at PMH, we were taken to a small room on first floor called ambulance waiting. It was a fairly large room with a number of stretchers lined up side by side, kind of similar to the “infamous” we were brought to Friday morning, minus the “Closed Room”. It seemed almost like a "holding pen" for new patients. I was transferred from the ambulance stretcher, to a hospital stretcher and we said good bye to our new friends, thanking them for a great trip.
It wasn’t long before we were "released from the pen" and brought in for my appointment. I was taken on the stretcher up to a second floor haematology clinic. I was surprised by the amount of people waiting in the clinic, it was packed. I definitely did not expect to see that many people dealing with blood cancer.
As I was brought up, each of their eyes one by one shifted to me with the most sincere looks of empathy. I could tell each one of them knew why I was there and felt true compassion towards me, it was at that moment I felt accepted into the blood cancer community. We didn't wait more than a minute before I was wheeled into one of the examination rooms to begin my day.
We first met a Nurse Practitioner that came in to get "my story" yet again. I felt like this was the 100th retelling of the story but I told it with the same detail as each time before. After the story was complete, another nurse came in with a huge tray of test tubes. She explained she was an IV nurse and was there to draw some blood for testing. Both inner elbows of my arms were extremely bruised and sore from all the blood I had given to this point due to my lack of platelets, but she promised to be gentle. She also asked if I would be willing to donate a sample of blood for research, which I agreed to.
She then proceeded to start getting the required tubes from her tray; I didn't think she was ever going to stop. In the end I counted 18 collection tubes. Then she pulled out what would be used to do the donation for research, my jaw dropped I am sure. It was straight out of the movies, a long syringe over an inch in diameter.
The needle went in with no pain as promised and then the draining began. Filling all the collection tubes went quickly, the donation tube took a little longer. It was so big that the nurse had to help the blood into it by pulling onto the back of the syringe plunger to help it flow quicker. I thought the donation would only be a bit of blood but it was the whole syringe!
As she finished a resident doctor came in for the 101st version of my story. He was much more thorough in getting my story than anyone before, but I think a lot of his curiosity came from the fact that we were around the same age. After we finished the story he explained that he would perform my bone marrow extraction procedure. Al had warned me about this procedure but there are no words in the world that can prepare you for a bone marrow extraction. I will try to explain it the best I can.
You are required to lie on your side in the fetal position while pulling your knees as tightly to your chest as possible. Not being able to see what is happening is really increases your anxiety throughout the whole procedure. First, the area is disinfected with a cold liquid that ends up dripping all over you. Next they freeze the surface area around the insertion point. This feels like most freezing, with a little burning as it takes. They wait a few seconds for the freezing to take effect and then inject the needle right down to your bone to freeze your deep tissue. This is where the pain starts, you can feel the needle against your bone and the burning is much stronger than at the surface but it is still bearable. They wait a few more minutes for all the freezing to take effect and then the real "fun" begins. The bone marrow extraction is broken up into two parts, an aspiration and biopsy.
In the aspiration the doctor draws the fluid out of your bone marrow. The needle going in is a fairly painless procedure, except you feel a little pushing and pressure as the doctor pushes it into the bone. Once the needle is in you are told to take a deep breath. Just as you take in your deep breath, they begin the extraction. The pain during this portion is excruciating. It is an intense pain that resonates throughout your entire body and feels like the fluid is being pulled out from every bone in your body. The fluid extraction only lasts a few seconds but during that time every muscle and cell in your body is contracted from the pain. The worst part is that it actually takes a minimum of two extractions to get the required amount of fluid. So once the first extraction is done you are given a second to recover and then asked to take another deep breath. This second breath is always much more tentative than the first because you know the pain that is coming and you are trying to prepare for it. The pain shoots throughout your whole the body again and then it is over. If I had to describe the whole experience in one statement, I would say it feels like your life force is being drained out of you.
The biopsy is the final part of the bone marrow extraction procedure. For this procedure they have to tunnel another needle deep into your bone marrow, break a piece off and remove it. From the description you can imagine it doesn’t feel very good, and you would be right ;) The pain is much different than the aspiration. Whereas the aspiration was excruciating and lasted a short time, the biopsy pain is caused from all the pressure in your bone marrow as the needle is cored in. This pain lasts much longer and increases each time the needle gets a little deeper. Just when you think they have the needle deep enough, there comes more pushing and pressure. The only thing you can do during this time is close your eyes, focus on deep breathing, and pray for it to be over. Once the doctor reaches their desired depth you feel some cracking in your hip as they are breaking the bone marrow and then there is rush of release as the needle is removed. As soon as the needle is removed, all the pressure dissolves and you feel a wave of relief that brings a smile to your face.
After the procedure you lie on your back with wadded up gown right under the insertion sight in order to help clot the hole that was made. You lay like this for around 10-15 mins. During this time I didn't do much talking, I just replayed what just happened over in my mind and was thankful and relieved it was over. I knew that was the worst thing I would go through all day so I was happy to have it done and over with.
Al had warned me the procedure would hurt, but I was not prepared for that which is very common. I have yet to meet another leukemia patient that says their first bone marrow extraction hurt less than they expected. I have even heard of people screaming during the procedure.
After the extraction we were told it would take a few hours for the lab to get the results completed at which time we would be brought back up and meet my oncologist, Dr Schuh. We were sent back down to the ambulance waiting room where we had lunch, hung out talking, and read for most of the afternoon while we waited.
This is where I learnt another Cancer Lesson; you are considered Patients, because you require Patience. During treatment you have a short appointment and then wait long periods of time until the next one. Cancer treatment is more I think about building your patience and ability to wait as it is the treatment itself ;)
Around 5pm we were finally brought back upstairs to my Dr Schuh and find out the results. We were brought into one of the clinic rooms which was nice and cosy with 6 of us in total in it. He us he would break the meeting into two parts. First, he would explain my diagnosis and then we would discuss the treatment plan and risks associated with it.
The moment had finally come, no more ambiguity, I could feel the anticipation running through my blood. The testing had confirmed I had B-Cell Acute Lymphoblastic Leukemia. This type of leukemia affects the b-cells of our body that produce antibodies (I will do a post to explain this in more detail). What makes this leukemia unique is it moves in both the blood stream and lymphatic system so it could also get into my Central Nervous System and brain. He continued to tell me that this leukemia can also have a chromosomal translocation that is referred to as the Philadelphia Chromosome, but they wouldn’t know if I had that for a week or so because my bone marrow had to be examined under a microscope; another Cancer Curve Ball. He assured us though that the presence of this chromosome would not change too much because they have a designer drug to help treat it.
We then moved on to the plan for my treatment. He explained that the entire treatment process would last a minimum of two years. First I would be admitted into PMH as soon as a bed opened up to begin the first phase of my treatment, called Induction Therapy, which would last 4 weeks. During this phase I would undergo aggressive Chemotherapy coupled with a few lumbar punctures to determine if the leukemia had spread to my CNS. They would also inject chemotherapy directly into my spine regardless if the leukemia was there or not as preventative measures
Once the four week Induction cycle was complete I would have another bone marrow aspiration to determine if I achieved remission. If I achieve remission I would continue down the treatment path. If I didn’t achieve remission, I would start the Induction cycle over again until remissions was attained. The rest of my cycles would be conducted as an outpatient and would occur in 3 week intervals.
We asked whether or not I would require a bone marrow transplant and Dr Schuh informed us it was all dependent on the chromosomal testing. If I had the Philadelphia Chromosome then I would require the transplant, if I wasn’t positive for the chromosome the two year treatment plan was often enough. He also explained all the risks associated with my treatment. I couldn’t believe how scary it all sounded. It almost sounded like the treatment was just as likely to kill me as the disease itself.
I left the meeting feeling fairly upbeat. I was a little overwhelmed with all the information and possibilities of what could go wrong but then I remembered the jam packed clinic and knew that he was just giving me all the potential circumstances. As long as I had faith, a strong fighting attitude, and followed all their instructions I knew I could get through this next phase.
As we rode back to Trillium in the ambulance my mind was deep in thought. I didn’t speak much as I was mentally preparing for what lay ahead. There was still some ambiguity with the whole Philadelphia chromosome but I just made the decision that I would assume I have it. That way I was mentally preparing to battle the worst case scenario. If it turned out I wasn’t positive for the chromosome great, and if I was positive for it I was already mentally prepared to fight it.
As we drove out of Toronto there is an image that will be burnt in my mind forever. As I was lying in the stretcher pondering what the next two years would bring, I looked out the back window and saw the CN Tower all lit up. In that instant I decided that when I beat this disease I was going to climb every stair in the CN Tower in celebration of my victory.
This concludes my three days of infamy and the Day of Diagnosis Series. Just so you aren't left hanging it was later confirmed that I was my leukemia was positive for the Philadelphia Chromosome, I will do a post to further explain what exactly the Philadelphia Chromosome is.
I hope you enjoyed the re-telling of my diagnosis with B-Cell Acute Lymphoblastic Leukemia, I tried to recount as many details as I could be remember and be as candid and honest as possible. As always comments and reactions are always welcome :)
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