Tuesday, September 29, 2009

We now return you to your regularly scheduled program.

So here we are a few weeks after the last post, or maybe just a few scant days. I seem to have lost a week in there somewhere just laying in bed not wanting to get up, not really wanting to eat, not really caring much to even live… That’s the cold hard truth. Why? A week ago today I had another appointment with my Hematologist but I actually saw another one in Livermore. Seems that the first is moving her practice back to Palo Alto and I am being passed onto another Dr. No real biggie, just a new face. What WAS new was what the new doctor had to say. Seems the “new medication” that I was going to go on is something that your body makes in situations where it needs more blood and my body is already making WAY more than normal anyway. Long story short, the new medication would have no real effect. So… what now? Well there is basically one more medication, Thalidomide, and it has it’s own set of problems that I am not even going to go into. Apart from that there is really nothing else except for a BMT (Bone Marrow Transplant) and I had already said that I was putting that on the back burner so to speak for my last ditch effort. Seems as though that pot is about to boil over. The risks involved with that are numerous and VERY serious. The percentages of it even working aren’t even all that great… thus the reason to keep it on hold for as long as possible.

Needless to say, both Sarah and I were VERY upset by the time the appointment was over. I could hardly sleep for several days while I “processed” this new development and neither could Sarah. I think this past week was even worse for me than the initial diagnosis and subsequent discussion of the BMT. I honestly thought at one point that everyone around me would be better off if I were just plain gone right now, then they wouldn’t have to see me deteriorate, or watch me suffer. I know that is hard to hear (or read) but that IS the truth. You see, depression is very much like being drunk. When you are too drunk to drive, you are too drunk to KNOW you are too drunk to drive. Similarly, when you are in deep depression, you are too depressed to KNOW you are depressed. Please don’t start calling all sorts of people, I never ONCE thought about ending my life. I could never do that, WOULD never do that. I know enough to get help and Sarah watches me like a hawk. I simply want you to know the absolute gravity of the situation. Heavy huh?

I think that the thing that upset me the most was that I gave MYSELF a false sense of security. I let the doctors tell me what would happen, what medications I would take… etc. etc. Now I am in charge of my life and I intend to stay there. I guess I always knew in the very back of my mind that it would eventually lead to this (the BMT) but I just didn’t WANT to go there. Sometimes you don’t get a choice where you have to go, you just go there because it is what must be done. Sarah and I are talking about it VERY seriously now and making preliminary plans for when it will happen. I will do it on MY terms though, when I am ready. There are a lot of very serious decisions to be made and we need to take some time to think them through very carefully. I know too that a lot of you are asking Sarah how you can be tested to see if you are a match to be my donor… you cannot know how deeply moved I am by that. I simply have no words to express my feelings on this. Thank you is all I have and it seems like it cannot even come CLOSE to being enough. I am not sure what is required but I will ask the doctor next week and let you all know. If you have any questions please, PLEASE feel free to ask. I will be absolutely honest with you. I think that the test is a simple blood draw but the actual “harvesting” of the marrow is much like the bone marrow biopsies that I had, and they hurt like HELL! Again, I think… It has been some time since I talked to any doctors about this and I pretty much dismissed it at the time. I WILL ask and let you all know though.

OK, onto happier things now… Sarah, Connor, Kenyon and I joined our friend Jennifer, her three sons, and her brother in an adventure that saw us driving to Reno, NV a week ago Saturday to watch the Reno Air Races. VERY COOL! Those planes were hauling BOOTAY!!! We also got some pit passes from a friend of hers (it’s good to have friends) and got to see some of the planes up close and personal like. There were also some military planes on display as well as putting on demonstrations in the air. It was a long drive but well worth it and I expect to see them again next year! We also went to the Capitol City Air show, just Sarah, Connor and I, a week before that. I finally got to see an F-22 Raptor in the air and it left me utterly speechless. The things that plane can do absolutely push the very limits of what seems possible according to the laws of physics! Connor got to meet the pilot and ground crew, get a t-shirt signed by all of them and one of them gave him a collectible coin! Very cool… I think I may have a fighter jock in the making!

I also began sorting through the mess that is my truck… It has been sitting outside ever since it’s arrival and I got it started and turned around and drove it into the garage. It was almost a gallon low in the transmission, the battery will not stay charged and the brakes need some serious attention. There is a laundry list of things on it that require my attention but it is my top priority. I want, no, I NEED to get that thing back on the road, to feel a sense of accomplishment and reap the rewards. I have once again been feeling like I have no purpose, no sense of who I am or why I am here. Like I have no job, so… I am going to treat this like it is my job.

There are some photos that I need to post onto the Flickr page too but that may have to wait for a few days. One of Sarah’s Uncles passed away and the funeral is Wednesday. At first I didn’t want to go but I know that it’s not me in the box and I don’t intend for it to be for a very long time so wish me luck! Once we are done sealing with that I will try to get the photos uploaded for you all to see. I also have several emails and Facebook messages to respond to (I haven’t forgotten you or been ignoring you, just dealing with my own demons) and I WILL get to those just as soon as I can. Please keep them coming, I miss some of you terribly and it helps to hear from you or read your words of kind encouragement.

Until next month (or whenever I feel I have something to share), I leave you with my love and thanks, for all your support.


1 comment:

  1. You have a huge decision to make regarding the transplant. I'm glad you're facing it head on and deciding things on your own terms and in your own timing.
    Depression comes with the territory when you are dealing with such a serious disease. You have nothing to apologize for when it comes to pulling away at times in order to be able to process all you are facing. You do whatever you need to do to wrap your head around this thing and be able to think clearly about what you choose to do from here.
    I am inspired by your honesty and your determination.
    I also appreciate these updates, and I know they are not always easy for you to write. They allow those who love and care about you and your family to express that to you and also to keep you in prayer every step of the way. You may feel you are fighting this alone, and in some ways you are since it is you who is personally going through it, but I assure you that you are not alone. Many people are underneath and around you in loving support and prayer.