Being Scared

I'm not quite sure why I am writing this blog entry tonight, possibly because it is 2:15 am and I have been trying unsuccessfully for the past few hours to sleep or maybe I just needed to get things off of my chest... Throughout this journey of fighting cancer I have remained upbeat and positive with everyone around me because in a way it made me feel better about things but also I think I just didn't want people to see how scared I truly am. I felt like I had to put up a front and brush things off as just being minor even though they were not and I was freaking out inside. Maybe it was an ancient survival instinct kicking in, blocking out the fear so that I could go on with things. Or maybe it's because it's not the macho thing to come out and admit that I am scared but there comes a time in your life when I think that everyone must admit it at some point. I'm sure that even a guy like Laird Hamilton who catches huge unthinkable waves for fun has been scared before in his life. I'm sure some of the top professional fighters have been scared at least once during a bout. There have to be Navy Seals out there that were scared when they were faced with live combat and all that training and bullets were suddenly real. Now whether they have admitted it, I don't know. But I think that it takes a real man to come out and admit they are scared. And I am scared...

For me the physical part of the cancer treatment has actually not been the hard part as most people would think. The mass amounts of low dose and high dose chemotherapy, the radiation to my chest area to the point that I have already met the max amount of radiation that a person should get, the two bone marrow transplants, those are all things that I am able to deal with. Sure it was hard and I felt horrible but I knew that after a few weeks the sickness would go away and I'd be feeling better again. Even the long lasting side effects like the neuropathy in my feet and left hand or the shoulder pain caused by the excessive radiation to the nerves in my brachial plexus, I can live with those. No, for me the hardest part has been the mental aspect of the entire fight. The not knowing what the next scan is going to show, will the cancer be gone, will it have spread, if the treatment doesn't work do I still have other options. It is these things that scare me and keep me up at night. And now following this last transplant there is a whole new demon to be afraid of GVHD. Will I develop chronic GVHD? How badly if I do develop it? Is it going to affect my lungs and kidneys or will it be more minor and just be an annoying skin rash? I know that I shouldn't worry about these things until they actually happen (hopefully they will not), but they always seem to creep into my mind on nights like tonight and keep me from getting the rest that I need.

Honestly, what scares me the most is the one thing that cancers patients tend to never want to talk about, the elephant in the room so to speak, and that is death. I still have so much to do and so many places to see and people to meet and I am scared that I will never get a chance to do them. But what scares me even more is the suffering that my family and friends are going to go through. They have already been through so much with me going through this battle and the last thing that I want to do is hurt them even more! And sure they will eventually be able to move on but I'm sure a piece of them will never be the same. And I know it is not my fault, it is the cancer that is to blame, but I can't help but feel guilty sometimes for the sorrow that they have already had to deal with and I don't want to put them through anymore. I have spent many nights crying myself to sleep thinking and worrying about this until I just can't worry anymore and I have no more tears to cry.

Dr. Reeder once told me before this 2nd transplant started that I had a choice, do the transplant and have a 25-30% chance of living more than three years or not do it and have a 5% chance of living more than three years. I took the obvious choice, you don't have to spend much time in Vegas to know that you should always play the game with the better odds. But I have been thinking about these numbers a lot recently and what they mean to me. Theoretically, I may not be around to see my 35 birthday, see my nieces and nephews play in their first games or even grow up for that matter. And that really pisses me off! Those percentages have now become my driving force to survive, I come from stubborn scotch blood and we don't give up a fight so easily so I am going to prove ALL of those doctors and their studies wrong! Who are they to tell me what I can and cannot do based on previous statistics, don't group me in with a bunch of other people because I am not like those people. I refuse to lose this battle! I may be scared as I go through it and my opponent may be bigger, stronger, and faster than I am but I have heart and determination and a will to live so that I do not hurt my friends and family. Tough times don't last, tough people do! So it is time for me to toughen up and keep on fighting. "Clear Eyes, Full Heart, CAN'T LOSE"!!!

New Years Update..

Happy 2011 everyone, I'm sorry that it has taken me so long to update my blog!!! A lot has taken place since my last post, and thankfully it's all been good! Right before Christmas I had my follow up bone marrow biopsy and PET/ CT scan. These tests are always very stressful for me and my loved ones as they determine if the treatments have been working and in the past they have not yielded great results. However, this time I received excellent news! The bone marrow biopsy showed no signs of cancer in my marrow and the PET/ CT scan showed that the latest transplant had worked and the donors cells were attacking the cancer at an astounding rate. Both of the masses have significantly decreased in size and the doctors feel that the new cells will continue to fight and soon the caner will be completely eradicated. It is still too early to be considered in remission, however I am on my way and keeping positive that I will be soon!

I was hoping that Dr. Reeder would release me to return to Hawaii at the end of this month, but he wants me to stay a little bit longer while he weans me off of the prednisone steroids that I have been on since the initial diagnosis of the slight graft v. host disease. He wants to make sure that once I am completely off of the prednisone the GVHD does not flare back up. I am now down to 5mg every other day and will completely stop the pills next Tuesday, after that I will meet with him for an assessment sometime during the first week of February. If everything looks good, I will hopefully be released a week or so later. It was pretty tough for me to deal with having to stay up here longer since I was really hoping to be home in January but I didn't come this far to mess around at the end. And I would much rather stay here a little bit longer now than head home and then have to come back.

I have also been dealing with a small blood clot in my upper right chest that was caused by my port. To treat the clot I had been giving myself Lovanox injections twice a day in my stomach and am now taking Coumadin as well. Dr. Reeder had me stop the Lovanox shots, but I will have to be on the Coumadin until the port is removed. Since I am done with my treatments and no longer need the port, I suggested that we just remove it, that way I can stop the Coumadin and not have to worry about the clot. Dr. Reeder agreed and with any luck they will be able to squeeze me into their schedule sometime tomorrow to have it taken out!

I promise that I will stop being lazy and update my blog more regularly... I hope that everyone has a great 2011, let's make it one to remember!

*** I also wanted to thank everyone that has been helping my dad out with remodeling his house so that I can live there when I return to Hawaii. I would list all of your names but you know who you are and I don't want to accidentally leave someone out. Thank you for your help and hard work, I truly appreciate it and I know that my dad does too!!!