Everyday Life and School

As a kid you have one wish during the end of July and beginning of August every year. That wish is to not have to go to school and have a never ending summer. This wish remains the same to about every student all the way up until you graduate high school and even college for some. The wish plays in our mind something like this: a trip back to California maybe once twice a month. Daily hikes on different mountains with our super close group of friends. Driving around getting food and shopping with the money that we have coming in at a steady income. This dream is obviously unattainable and it would get us nowhere. After you have thrown yourself that August pity party, you then get your act together and go to school. No, not always; sometimes you get your 'wish' and it is exactly the opposite.

It was July and even though I had been diagnosed with A.L.L., I had aspirations to still go to school for at least part of the day. I kept that thought and the school was on board and very helpful every step of the way. Then we were hit with some pretty big news. My dad explained to me that there was some issue with the chromosomes in the leukemia and that my chances of life were 30% unless I received a life saving bone marrow transplant.

"Lets do this" I said as tears rolled down my face.

I was ready to start and complete this journey as soon as I could and that included going back to school in this school year. I was granted that 'wish' that we all wanted and soon realized that nobody actually does and ever will want that wish. My heart sank and I thought about all the things I would miss out on. I received more and more information about the isolation that is brought with this transplant and just kind of brushed it off and thought again,

"Lets do this" This time much more agitated.

The hospital stay finally arrived and I was as ready as I could be. The hospital was the hardest 46 days of my life; details in my Trying to Keep Perspective: Day 100 post. Once that stay is over, the fight surely does not end in the hospital and the thought of the isolation was and is still in the back of my mind. I returned home and remembered the things that were entailed to do after the actual hospitalization.

You get to leave the hospital but some, if not most of the annoyances from it travel with you home. For example, the broviac where you received fluids and will continue to receive fluids for another couple of months is on your chest, in a dressing at all times. Also, that part of the 'wish' were your driving around and eating fast food, yea that no longer is a part of the deal; it is only homemade food for the next couple of months. You might also be lucky enough to be put on Prednisone. The drug that will make you look like the Michelin Man, make your knees weak, send your blood pressure high and put you on insulin shots. I bring up all these obstacles this medicine has brought upon me not for pity or empathy although its nice to get some every now and then. I bring it up because there is still so much positive that has and will come from the 'wish' that actually may not be all downside.

I am missing a lot of things I wanted to do at school this year, but I still have some privileges others do not. For example, I try to sleep in most days barring no early appointments or insomnia from the prednisone. I started online school and have a chance to now graduate on time or even ahead. Although my diet is restricted, I do get to stay away from Dobson cafeteria food which I do not quite mind. I get to do physical therapy in the comfort of my own home and still get to leave the house sometimes with permission of the doctors.  But most importantly I know that I am on the road to recovery and out of the hospital with the ones I love most.

Code Blue

Towards the beginning of the last two weeks, things really started to progress. Although my platelets are not 'producing' the way we want them to, physical therapy and the thought of starting online school were helping me. Though I was sore and a little tired from the therapy things looked positive and challenging. I had some plans to even get out of the house to go to mass and catch a movie. Things of course always do not go as planned in this process as I have come to realize for what feels like the millionth time.

I went to clinic for an infusion of IVIG(a synthetic drug that helps boost immunity). A relatively normal but long day barring no stupid complications. The day went well with just one high blood pressure but nothing to worry about. I come in the next day for the same infusion and some platelets. Of course, the first blood pressure of the day is pretty high so the doctor gives me a pill to lower it, no big deal. An hour goes by and its time to check my BP again which has now dropped to a scary low number and before I know it, I am being pumped with fluids to raise the pressure. No change: so the words Code Blue were exclaimed and what seemed like the whole hospital was gathered in or around my room(The actual number was between 20 and 30). As this proceeded I was able to remain calm which made by dad able to remain calm which at that point was all that mattered to me. I was rushed to the E.R. after the lack of my BP raising. I had been demoted to an entourage of five or six people including my dad. After a half an hour or so in the emergency room, I was moved to a room in the ICU, where I would be spending the majority of my two and a half day stay. A stay that included another BP incident(High BP in the morning, take THE SAME PILL, low BP, then lots of fluids and then a return to normal) that was not of the same caliber. A stay that included the start of blood sugar draws and insulin shots. A stay that put me in a bed for 60 hours and took away what felt like all progress from physical therapy.

I realized once I made it home that the journey I am on is not going to be a simple routine. I realized each day will require a new effort, some easy and most not. It became very clear that the road that I am on will have more obstacles and that it will soon be over and back to being normal. I know that most importantly through God, Family and Friends, I will win this fight.