It hurt…like nothing I ever felt…

This battle I am wage against this disease essential thrombocytosis (ET for short) changed today. I have written that numerous times I have no symptoms thus far. Today that still stands true, however today I had a bone marrow biopsy…..it was necessary but hurt like a bitch….like nothing I ever felt. I will get the results in 7 days…..the good news is my platelets went down albeit slightly…and other than the fact that the blood tests show I have higher than normal platelets all the other tests have come back negative….so next was bone marrow biopsy which they did yesterday. It was done by my new buddy Erin….who did an awesome job and I can tell we are going to buddies for a long time…I was lucky to have her take care of me yesterday….and like I said I find out the results in 7 days. But more good news is that because my platelets have actually gone down instead of going up I don’t have to start on any medication ….so although the bone marrow biopsy was not a great experience I am happy not to have to start taking any medication …at least not yet. So I always try to take the positives out of everything….so the positives not in any particular order (1) I got to meet Erin…who did a great job taking care of me and answering my 1000 questions all with a smile….oh and Kiona and her had a good laugh about men handling pain…(not sure that is a positive ha ha ha)  2.) no medication yet….(3) Platelets went DOWN  to 720. 4.)  We are so blessed to have the Suzanne and Lizzy   in our life who took care of Nolan while I was at the Rex Cancer Center….  In life anytime you can meet great people no matter what happens your day is a success….So although I endured a painful procedure, and I am hurting today….Yesterday….was a good day….So that is it for now….I am doing great….and I hope you are too….Happy Friday

Tomorrow I go see my new friends…

Yup tomorrow is the day I have been waiting for and fearing….I go see my new friends at Rex Cancer Center..Ya see I feel just fine and I have always been one to say….don’t fix it if it ain’t broke. But even though I feel just fine…worked out last night played golf last fri and sat….tomorrow I have a feeling I am going to feel like a lab rat…but to be honest I can tell something isn’t right…I often feel fatigued not crazy fatigued but it’s like you feel when you go through the day without much sleep..but that is it…nothing else at all is bothering me. Other than the anticipation of what they will do to me tomorrow. Tomorrow at least we will get some more answers about the tests and what will be happening going forward. That will be good….So if you are reading this ….tomorrow at a little after 1 pm think good thoughts for me….I will be strong, positive and hopeful regardless of what they do or say tomorrow.  Wish me luck tomorrow….I will let you all know what the deal is when I am able….until then…..I am doing great……I hope you are too….

Wishing it away won’t work….

I have spent the last couple days since I made public the fact that I have an incurable disease telling everybody that I am fine and dandy…and I am really, but one thing I don’t say…is that the future scares me. The unknown of what will or could  happen and how I will be affected by it all….Most of all the treatment ….the bone marrow biopsy, the chemo….that scares me…..I am not afraid of dying….don’t get me wrong I don’t want to die….but I am not afraid to die. This appointment I have on 4/21 at the Rex Cancer Center is not something I am looking forward to….the fact that I could be getting a bone marrow biopsy  is something I just don’t want to deal with…I have to deal with it ….but I don’t want to.  Also the fact that I most likely will have to start on chemo next week also I think will suck….You see right now even though I know I have this “incurable disease” I have no symptoms…I can work out (had a great work out at rapid fitness tonight) I go about my day like I am fine and dandy….but then comes the 21st and they start fucking with me….sticking a needle in my spinal cord….making me take yucky medicine….Thoughts crawl all over my brain throughout the day….so if I die…how will Nolan handle it….I worry about my boy….if something were to happen to me….I mean he is such a daddy’s boy….I don’t care about me so much…but I don’t want him to be sad or scared….that worries  me.  Remember I am just venting the thoughts and worries that flash in my brain from time to time….I am not sitting here wringing my hands ….just the constant flood of thoughts …..I wish I could turn them off….they only come to the surface here…..this is my outlet….so thanks for listening….

The short name for Essential Thrombocythemia  is ET…..well just so there is no mis-conception….I hate you ET……ET go home…or go back  where ever you came from…..for the first time in my life I don’t want to admit it…but I am a little scared…again not afraid of dying…but of the future…and what it holds for me. Even though I am a little scared….I will never give in…I will never back down from you ET….Oh and ET….it looks like you have ended me having an occasional Cigar which I loved to do…so fuck you very much for that too…..To end on a high note I am going golfing tomorrow with my buddies….I will let you know how that went….That’s it for now….until next time…..I am doing great….I hope you are too……..Happy Thursday !!

I’m a lucky guy…

So I have been thinking ….So if I look at my life thus far I would have to consider me a very lucky guy…I mean if you just count my awesome wife, and my sweet sweet little man who is my son and stop there I am waaaaaaaaaaaay luckier than most.  Add on top of that all the great friends I have met and have in my life, all the places I have been, and all I have been able to learn from good experiences and bad….man God just blessed me more than I probably deserved.  But it doesn’t mean I have to like or accept the fact that I have an incurable disease….I mean I accept that I have an incurable disease but I don’t like it ….not one little bit. Don’t get me wrong ….my plan is set the record for longevity for people with this desease …..I always said if I make it to 80 that is a good run….at least that is what I am aiming for….keep working out…keep eating healthy…. 85 here I come…..I am doing pretty good….I am still working out and have no symptoms other than the mental part of all this….In fact I am going to go golfing Friday & Sat  with some friends….which should be fun..and take my mind off of all this for a while….That’s it for now….so until next time….Happy Monday….I am doing Great…and I hope you are too….

But I feel ok….

Yeah I feel ok….but about a week ago I was told I have an incurable blood disease..

(Essential thrombocythemia (ET, also known as essential thrombocytosis) is a rare chronic blood disorder characterized by the overproduction of platelets by megakaryocytes in the bone marrow in the absence of an alternative cause. In some cases this disorder may be progressive, and rarely may evolve into acute myeloid leukemia or myelofibrosis. It is one of four myeloproliferative disorders…

I didn’t gasp…I haven’t gone why me…yet….I am trying not to go there…. I figured it would be good for me to blog about it…you know express my faults…might help me not get depressed about it all….I didn’t see or feel it coming, but unless the 2nd set of Dr’s and the oncology dept at Rex is wrong I have an incurable blood disease that will manifest itself and take my life. It is a genetic rare disease that makes your blood form too many platelets…the thing that clots your blood (now that is what I really call to much of a good thing) . The top off that good news the Dr told me it was incurable….I have has some bad days, real bad as a matter of fact, but that was a bad day. They good news is that I could ….key word being could….have 10 to 20 years of quality life left….that was actually the statement that shook me a little…putting a number on your life….didn’t really like hearing that. The other good news is…I am going to be 58…if I can make it 20 years….I will be 78…and hell…that ain’t bad…and the longer I can live the more chance they might find a way or something to fix this mess….not counting on that you see, but I am still getting my head around this and thinking a million different things….Lets be clear …I am not a good writer, and I am doing this for me for the most part, you know to write my thoughts down. So I apologize if my words don’t flow….I am too tired to write much more…I have to work tomorrow and it is 12:30…Until next time…good night….I am ok…and I hope you are…