Cuck Fancer

It has been 10 days since I left the hospital and it has felt like 10 years. I am day +23. It has been 23 days since I got my stem cells and my new immune system. I never knew that I would be so tired and so sluggish from receiving a new immune system. When I think new immune system, I think rejuvenated, revitalized, like a kid again! I wish. This last month has been the most terrifying, horrible, craziest experience of my life; one that I hope nobody reading this ever has to endure. Going into this whole process I wasn’t really sure how bad it was going to be, but trust me, it was horrible. And it really doesn’t matter how much doctors or others attempt to prepare you. The experience is so different from anything else I’ve ever been through it’s nothing but a shock to your entire mind and body.  There is really no way to say, “it’s like this or like that”, because any way I try to describe it, I will fail to accurately describe how bad it felt to be going though… However, I will try.

It didn’t start out too bad. The plan was, as you remember, to be given chemotherapy for 8 days, then on the 9th day I would get my stem cells back, and then rest and rebuild for how ever many days it took to bring my white blood cell counts back up. So, the first three days I was administered one drug that as it turned out by comparison (to the others) wasn’t too bad. I am thinking’ shit, this is going to be a cakewalk. I’m young, I’m a fighter, keep it coming. Then the next drug came. We are talking that (as I said previously) nuclear bomb of chemotherapy and my body was Hiroshima. My blood pressure dropped to a staggering 75 over 30. I couldn’t even get up to walk, and when I had to, it was only to the bathroom where I would sit down and yell at the toilet for as long as I needed to. One time I fainted in the bathroom; special thanks to my grandpa who caught me. In the middle of the night, they had to alarm my bed even thought my mom was right there the whole time. It turned out that they had so many drugs in my system I became delusional in the middle of the night and tried to get out of bed on the wrong side, literally almost pulling my Hickman catheter out of my chest. (Not a pretty sight). After that day stick a fork in me, I was done! Even though I was able to rest the next day (no chemo), I couldn’t even remember what happened the day before. That seemed to be a trend. I couldn’t remember anything! I think that was for the better. People would tell me what happened and it would kind of ring a bell, but none of it was from my own recollection. From what I understand, this is the mind’s way of protecting the body from remembering painful experiences.

So, after a day of rest, on to the next chemotherapy drug AND, if possible, I think the next drug was as bad if not worse! I don’t remember exactly what it did to me, but I do remember having plenty of arguments with the toilet. After these not so lovely days were over, they re-introduced my stem cells back into my body. By this time, I had so much anxiety I couldn’t contain my fears. I’m not even totally sure what happened, but compared to everything I had been through this should have been one of the easiest parts, but it wasn’t. Re-introduction of ones stem cells is the same as a blood transfusion. Simple right?  However, I had some weird out of body experience where I couldn’t even contain my anxiety. I’m not sure if it was the thought of what was happening, the affect of the stem cells on my body, or me just freaking myself out, but it wasn’t a pretty sight and required a lot of meds and low calming voices to get me through. To this day, I still don’t get it. This, by the way, is Day 0.

Now we are on Day +1. I am feeling ok, a little weak, but ready to bust out of the hospital. As it turned out, the long-term effects of the chemotherapy have not really had an affect on me yet, so I am not feeling too horrible. Just worn down. Kind of like having the flu for 6 months. I had been told that at about day +3, your counts start to drop, and at about day +9 they go back up. Well as it turned out, when my counts dropped, it took every ounce of me to get up just to go to the bathroom. I didn’t want to walk, I didn’t want to talk, eat or anything. I didn’t even want to go to the bathroom. All I wanted to do was lie in bed and watch Lost (which by the way is the greatest show ever, I watched 5 seasons in 10 days). They said that all of this was normal. It is crazy to think that my counts reached 0 across the board. I had no white blood cells, red blood cells, etc. The word weak does not describe it. I felt dead and frankly my energy was so low, I thought it was ok to be so. I felt as if this would never go away. I was miserable. Those 6 days were something that I try not to remember…

Come day +9 my counts start to go up, I begin to feel much better. Come day +13, my body has reacted so well to all the drugs they were giving me to increase my blood counts, that I was going home. I think I did quite well in the hospital, considering I discharged a little faster than the average group of people.
This blog for me is really about wanting to thank everyone who sent me something in the hospital. All of the cards were so heartfelt and felt so good to receive. Truly. I wish I could thank you all individually, but that would take forever. City of Hope said I had the most cards in the whole entire hospital. It made me feel really good. All of the DVD’s, magazines, and toys were things that kept me busy when I got bored of watching t.v. So I just wanted to say thank you, and please know that a little card goes a long way when someone is feeling sick, alone and isolated.

That drive home was the best car ride of my life. The fresh air, the beautiful blue sky, I just embraced it all and got lost in the beauty of it.  I feel like I was released from prison and now I could just go home.  I wasn’t sure how home was going to be. I imagined I was going to be really happy, feel really good about everything, and life was going to be normal again. I am always so damn naïve! Don’t get me wrong, not having a nurse check your blood pressure and your weight every 2 hours was awesome! Sleeping in my own bed is like sleeping on a cloud in heaven and any food that isn’t hospital food tastes incredible.  However, the part that I didn’t realize is how hard it is to actually rebuild my strength. I am so weak. I have no hair.   I am lazy. I am not motivated, which is probably why it has taken so long for this blog to post. I wish this experience could be like last time, where 2 weeks after treatment I was at school, working out, doing what I used to do. I guess this is going to be a little bit longer. They say for every 1 day you are in the hospital, it takes about 2 days to recover. In about 6 weeks I should start feeling normal again, but I think it will be 6 months until I regain any strength back. I am supposed to be walking everyday just so my muscles can start to work again. I try to go out, run errands, see a movie, and just embrace myself in normal life again. It is really hard. A lot of me is scared. They say it is like posttraumatic stress that people get from a traumatic experience, like coming back from a war. Maybe people who come back from Iraq can understand in that when you are taken to your lowest point both in your body or what you witness, it is really hard to come back to reality. The truth is, I have horrible dreams every night, which doesn’t make for a good night sleep. I think I am a bit depressed as well. Not like give me some Prozac I’m depressed, but more like I just want to watch t.v. and not be bothered by any of the nonsense that I have had to deal with for so long. I just think after all of this, I am ready to close this chapter on my life.  For the 2 of the 3 years that I have been an adult, they have all been about cancer. I so badly just want to be a normal adult. I don’t even know what that means any more. I guess somewhere I know it’s going to happen, but I am not a patient person and enough is enough.

I know all of this may sound a little unlike me, but unfortunately this is my reality. I think I know that one day I am going to be an advocate for cancer survivors, I just don’t know when. I will never forget what happened to me in the hospital because I created video logs of the experience. I am not sure if I will ever look at them again.  Maybe down the road. There are only a select few in this world that have gone through what I have gone through, and I know this.  Someday I am going to raise millions of dollars for cancer research. I just need some time. I need time to get back to a normal life, being a student, living in Newport Beach, with no responsibilities except getting good grades. I am going to work hard to get back to that point in my life, but frankly, it seems years away.
Everybody who has been there for me these past 6 months, you are the reason that I was able to get through this.  Your words, your phone calls, your cards, all of it is very comforting and I thank you for that. Together we have raised over $15,000 for cancer research! That is amazing! I am excited to close this chapter of my life and start a new one. I have ideas of throwing a benefit or party in the near future, or doing something with all of my friends and family to celebrate turning this corner and putting cancer behind me! I will keep everybody posted. I love all of you.

**On a side note: I have nothing but praise for the City of Hope. This is by far the greatest hospital. If you must be treated for cancer, this is the place to go. It is not only their remarkable research of new medications and treatments (although they lead the field in these areas), but their staff is just the most friendly and caring staff I have EVER experienced.  They made me feel at home each and every day.  I did not have one bad experience there. If I could ask one more thing, spread the word about how amazing the City of Hope is and I believe the only place cancer patients should be treated**

Thank you to everybody,

I love you all,

Cuck Fancer, BOOK CLOSED!

Ben