Warning: Salty Language Alert

This is a post that summarizes my position on some things. As you may or may not know, I am trying to find out if I’ve got a life threatening condition or something that is just going to clear up on its own. This blog is now going to chronicle my journey through finding an answer, finding a cure and making it through the bullshit from here to there so I can go on living my life in a meaningful way: seeing my son grow up to be a good and successful man.

I will make no apologies for the language I will use or the things I might say. This is as much for me as therapy as it is for you to learn and/or see how I am doing. Please do not take offense to anything I might say as I am sure I will hit nerves occasionally, or frequently as I am fully capable of.

Understand that I am going through this in real-time and as such things will be said. There will be times when I am just pissed off and need to vent. There will be times when I am depressed and just want to vent. You see the theme here? J

If you or a loved one that has gone through a similar journey I would, of course, love to hear their story. If you have any advice I’d love that too. I feel like I need supportive people surrounding me as I find my way.

Please help me.

Got The Call!

Not surprisingly I just got off the phone with Dr. Morris from the NIH. I say not surprisingly because I knew he’d call when he had answers. Unfortunately the answers aren’t good. My diagnosis?:
Peripheral T-Cell Lymphoma

That sounds familiar. I was originally diagnosed with this for about an hour and a half two years ago. Then my diagnosis was changed to T-Cell LGL. *gulp* this is not good. Doctor goes on to tell me that while I don’t exhibit symptoms now Lymphoma is typically a very aggressive type of cancer and that I came to them when I did was a miracle.

I agree. Had I not gone up to NIH to get answers I’d still be thinking I either have ITP (benign) of T-Cell LGL (malignant but indolent). I’d be dead without this knowledge. So, I am left holding the bag on this one. It’s a peculiar feeling to be on the phone with another human being delivering a diagnosis that could, quite possibly, spell the end of your existence. So, with that I think I need to absorb all of this and figure out where I stand on the issue. The NIH team wants to “get back with me once they talk to my regular hematologist”. Mkuy? Mkuy! I think Dr. P will agree, but ultimately will be shocked. I firmly believe that Dr. P cares about my well-being since I approached him two years ago. My honesty and straightforwardness allowed him to be open with me. Hopefully this continues.

Will report back.

Testing Day Two

Well, today was somewhat of a letdown. I mean, yes I got to meet Dr. Morris and part of his team. Which, by the way, was very impressed with my level of knowledge of medical in general but specifically with the two conditions I might have.

I used to want to be a doctor so medical-ese comes naturally to me so to say things like idiopathic thrombocytopenia purpura are pretty straight-forward.  He basically asked me if I knew of the conditions and when I said I did he said, “ok good. What are they?” *gulp* OK let me collect my thoughts …. I started with what I know and went in order. A good 8-10 minutes later I was done and he had a surprised look on his face. Guess he’s used to dumbing shit down so his patients can understand. Not this motherfucker, man. Not this motherfucker. Just talk.

Well, what he had to say was somewhat off-putting. He said that basically the think that I have some auto-immune disorder and that it should “blow over”; that there’s nothing to really be concerned about at this point. However, admittedly it was just based on my blood work, and that it would be another week or so for the biopsy results (to which some 2000 test were being conducted). By the way, he could tell I had been “working out strenuously” because my CPK was off the charts. Hehehe, I spent two days walking around in DC in 95 degree weather. Yeah I guess 96 degree heat and walking almost 15 miles would do that eh Doc? 
Leaving kind of dejected and feeling like I got nowhere. I already knew I have a couple of things working against me but FUCK! Hopefully he’ll call me with some news. Good or bad I need to know what the hell I have, so that I can mentally prepare for anything I need to….leetttttttt’s gooooooooooooO!

Sightseeing is over, time for “work”

Ok, we’re in DC and just spent the last two days sight-seeing. It’s been great, but I know that tomorrow and Tuesday I’ll be poked and prodded in such a way that will, undoubtedly, help me understand all the alien abduction stories in a different light. I just hope I don’t come home with a satellite in my ass.
It was nice seeing some of my wife’s friends at the zoo and also at dinner. I won’t tell her this but even though they are technically her friends I found great comfort in being around them. “Cancer” and “Health Problem” are words that never came up. Though, they did seem genuinely concerned that I be OK. I appreciate that.
So tomorrow I have a blood draw and a bone marrow biopsy. Then Tuesday I have CT scan and finally get to meet the Doctor. Should be either Dr. Morris or Dr. Stannick; both of whom I respect greatly for their work.

Off to the NIH

So, we’re off to the nation’s capital to try and find out once and for all what the hell I’ve got. To bring any new people up to date my situation looks a little like this (and a hearty hello while we’re at it J):

About two years ago I went to see my primary physician for a routine physical. As part of the physical they drew blood for a CBC. Ok, no problem I thought. That lab came back as “Gee, your platelet count is a little low we’re going to refer you to a hematologist. It’s probably nothing but we’d fell better if you saw him” Two things 1) my platelet count back then was 139 (where 140 is considered “normal”) and 2) I’d fucking kill to have a platelet count that high now. Ok, so I went to see this hematologist … didn’t really dig him; seemed to move sloooowly in the way of trying to figure out what I was all about.

He ordered another blood test and a flow cytometry. I didn’t think much of it because “I’m so healthy”; neither did he. About a month later we reconvened to discuss the results.

“Hmmppphhh,” he snorted, “this absolutely puzzles me…” The flow cytometry indicated that I not only had a T-Cell population in my blood (albeit a small population at < 5%) but that the T-Cell exhibited as monoclonal with a gene rearrangement. Back then that meant nothing to me. Now, however, that means lymphoma.

I said earlier that I did not like this hematologist. Slow poke wanted to wait 2-3 months before proceeding with the next step of testing. At this point you all should know that I am a very aggressive person about most things I do but with this, the one thing I needed to be aggressive about, I wasn’t. I agreed to wait still thinking there was nothing to it, and everything would be as fine as it ever was.

My wife on the other hand took the lead on this topic and found me another hematologist; one that was highly recommended by a family member. So, I thought, “What the fuck? Sure I’ll see him”. One week later I was at his office explaining what the labs showed, my history and all the other obligatory bullshit you get to “go over” when you’re a new patient. Anyhow, at one point I said, “Listen. You seem like a really good doctor, but you need to know that I am not here to fuck around and I need to find answers and/or treat if necessary…”. Besides not looking puzzled at all and not skipping a beat re replied, “Well I can appreciate that. The only way I am going to get answers is to perform a bone marrow biopsy”. 15 minutes I was on the table getting a drill sized needle crammed into my back. That was the aggressive I was looking for. He came back with a preliminary diagnosis of “Peripheral T-Cell Lymphoma”. Then, an hour or two later called me back and explained that he didn’t feel comfortable with that and after conferring with his colleagues at Sloan Kettering they agreed to change the diagnosis to ““T-Cell Large Granular Lymphocyte Leukemia”. Oh. So what do we do? “We wait and watch. Right now you’re asymptomatic and there’s nothing to treat.”

Fast forward two years of a slightly negative downward-trending linear line that is my platelet count …

So, I’ve just gotten tired of not knowing what is wrong with me. I need a name for whatever the fuck this is. Good or bad I need to know so I can mentally prepare. Is it ITP, or is it T-Cell LGL? Please I just have to know goddamnit!