Trying to Keep Perspective: Day 100

Perspective can change in an instant and put you on your knees faster than you can say the very word itself. I have had this gut wrenching, tear jerking experience happen to me on more than one occasion for good and bad.

The first and most obvious one is the original diagnosis. I overheard the word leukemia spoke from the other side of my mom's phone followed by the cry of a mother whose heart had sank as deep as mine. Automatically my perspective on life was changed. I might die I thought, but the doctors soon put that thought to bed as I am soon informed that this is a disease with a 90% cure rate. Let's kill this thing with some chemo, that was my new point of view. This thought brought some comfort and my mind was in a good spot for a couple weeks. But of course nothing is written in stone and perspective can change again.

My dad walked in with a look on his face that I had never seen him wear before. My heart sank. I knew exactly what he was going to say. He then said what I expected:

"The test regarding your chromosomes in the leukemia cells is abnormal. This means you are going to need a bone marrow transplant."

How. I was just getting a hold of the fact I had to do chemotherapy, now I have a 30% chance of life unless I get this life saving procedure. After a hard couple days I did what I thought any great fighter would do and chose to do just that; fight and get a life saving bone marrow transplant. As time and chemotherapy continued on, B.M.T. crept closer. At this point, I am just ready find a donor and get it done.... and then in September it happened. We found a donor and a date was set for October. Let's do this.

It is hard to be anything but joyful the day you receive the transplant and joyful I was. The following weeks however, your perspective and almost everything else changes. To keep it brief, your hair falls out, your lips scab up, the inside of your mouth has more sores and dead skin than you could picture (or at least in my case), and I am sure you can imagine what happens to the G.I. track. The joy is still there just blanketed by the constant nausea and pain fro all the symptoms of chemo and radiation. But like before, there is only one thing you can do and that is fight on and keep a positive perspective. I did just that and made it out of the hospital in 46 days.

Surprisingly, the hardest period of time to keep a positive perspective in the last seven months has been the time home with no chemotherapy, and so far no hospitalisations. For me, dealing with the immuno-suppressive drugs and isolation since B.M.T. have been a real battle. It is a challenge to watch the world progress and yours just pause when you feel good enough to proceed. That is why it is important to count every single blessing on this whole journey and fight my fight.

First Off: Thank You Doctor Jones

The last seven months of my life have been a series of trials that I never thought that I would have to endure. It is a constant battle of staying positive and focusing on how blessed I am even though the circumstances. I would like to use this blog as a way to not only share my experiences but also my opinions and new unique perspective on life. In order to really understand that perspective, my journey begins around March, three months before diagnoses.

In March, I attended a church retreat that really helped me dive back into my faith and start thinking about the importance of my spirituality. I strengthened my relationships with not only God but my Life Teen community as well and it was great. On that retreat I felt that I was called to do something to help others. Whether it be something as big as go on a mission or just volunteer at a local food bank. With that calling from that retreat, I tried improving spiritually and embracing that calling but week by week I did not really get anywhere.

"I am sure Steubenville West will be where I really find what I am looking for"

That is the thought I used to make it seem like my lack of action was okay. Besides I had to worry about school, swim, getting my drivers liscence, getting a job, hanging out with friends, and having a good summer.. Right? So I focused on those things. I Got straight A's, was in the best shape of my life, got my license, got to hang out with my friends and even earned some cash working a wedding (Coincidentally, that was where I had naively experienced some of the Leukemia symptoms for the first time). I was enjoying my summer and working hard in the pool which was important to me. This was the year I would go to state and see all my hard work from that year pay off. Something was off however. I was not eating as much and would sweat while I slept and was sleeping a lot. My energy was so depleted that I was missing sets and intervals that were beyond doable. There are three moments in particular that I knew something was not normal although.

First, about a week before I was diagnosed I decided to jog around the block and I could not keep any sort of pace. My knees felt weak and it felt like I was on the last mile of a marathon. I ended up walking almost 70% of that 'jog'. I kept to my self about it and became more frightened when at mass two days later I was having trouble simply transitioning from standing to kneeling. I knew something must be up so I checked my temperature that night. I had a fever of 99.8 (which we do not consider a fever currently in the house now due to the possibility of a hospital stay) so I decided swim at 5 am the next morning was out of the picture. Tuesday I felt a bit better, had no fever so I decided to go. Practice was a long course practice that was challenging but again very doable. My energy still was not there and the water was just freezing. I kept moving but it kept getting colder. I started to get paranoid when I had been swimming for for 45 minutes and would not stop shaking. My coach let me warm up in the showers but I was still so cold.  I returned from the showers frightened, called it a day and headed home for more sleep. The next couple of days continued with low grade fevers, missed practices, sleep and what I thought at the time was a pointless doctors visit. It went somewhere along the lines of:

"I am hot all the time, not really eating but feel bloated and my energy is low."

"You probably just need more sleep and nutrients before and after practice. I would like you to get blood work checked however."

Thanks a lot I thought. That doctor saved my life by ordering that blood work but I looked at it as another appointment and no answer to my problem. Not only did she save my life by ordering that blood work but the doctor gave my mom the news on a Saturday while she was on vacation. So thank you very much Doctor Jones, God's perfect timing and grace that was shown from the very beginning.