Harris Fellman Live Life To Its Fullest

Spleen Watch 2011

I have to admit — I never liked my spleen very much…

Dr Black rattled off a bunch of stuff yesterday — all I really remember was how proud of me he was for having discovered it on my own (well, noticing “something” and asking my general practitioner about it) and the diagnosis he gave — “just to get the PET scan”.

Dr Black is a hematologist (blood specialist) and oncologist (cancer).

I distinctly remember the feeling of walking into a clinic with “cancer center” plastered on the wall… but then the first thing Dr Black said when I sat down was pretty much “don’t worry, you’re not here because of cancer – you’re just here because of your low platelets.”

Long story short, I was first referred to him about a year ago because I have a somewhat low platelet count. At the time, after plenty of testing, he ruled everything out that it could be and gave me a “presumptive diagnose” of something called “Immune Thrombocytopenic Purpura” (ITP for short).

Basically, all the rest of my related indicators are fine so what it sounded like to me was “you have low platelets, we don’t know what’s causing it, so we’ll just go with ‘ITP’ for now”.

Alright, so fast forward to about a year later (3 weeks ago). I noticed a little bump or something on the left side of my abdomen while lying in bed. I’d been meaning to make an appointment for my routine yearly physical – and this was impetus enough.

So, short story made shorter – my general practitioner noticed that my spleen was potentially enlarged, I got a CT scan, found that it is indeed enlarged, and was referred back to Dr Black.

I met with Dr Black yesterday – and, as I said earlier, he rattled off a bunch of stuff — said if it’s ____, then we would probably remove your spleen… you’d need some vaccinations first because the spleen usually protects against blah blah blah … and if it’s _____, then there’s some other treatments…

Also, I remember him being either intrigued or perplexed or both by the fact that, once again, I have no other indicators really – I’m otherwise quite healthy. He seemed surprised that he didn’t notice the enlarged spleen a year ago (and I have to admit, I kinda remember him feeling around over there at one point last year – oh well).

So, let’s see… now the thinking is that the low platelets are because of the enlarged spleen and the spleen is enlarged due to something else (so, most likely *not* ITP anymore). And whatever it is — it’s obviously a “slow” growing disease.

Anyway, back to the diagnosis — “I’m just going to put down ‘Non-Hodgkins Lymphoma’ in order to get the PET and CT Scan” is what he said — so, he’s not actually saying “I think it’s Lymphoma” at this point — again, there’s no other symptoms, nothing in the blood & other tests I’ve done thus far — but a brothah still doesn’t like that shit being on his mind even if “just to get the PET & CT Scan”.

(And even if it IS some form of cancer, it’s obviously very slow growing and probably quite treatable, since I’ve had low platelets for at least 6 or 7 years that I know of.)

Honestly, I’m not too worried about it – like I said, I never liked my spleen very much anyway and it seems an easy way to drop a few pounds by having it removed. (No, we don’t know what it is at this point.) But as someone who likes to make people laugh – I’ve noticed that saying “spleen” makes people giggle almost as much as “Asberger” or “goiter” — it’s just a funny word.

In the end, I’m not too worried about this yet. I’m certainly not looking forward to getting a CT Scan again or a PET scan for that matter — as a bonus, I do get to take my pants off in the company of some lovely technicians. Oh, and I’m REALLY not looking forward to getting a bone marrow biopsy next Friday either – I’m wondering if the doctor can at least give me some Nitrous so I can laugh about it as he drills into my bone. Hoorah!

Interestingly, I’ve always wanted a full body scan — who knew all I had to do was inflate my spleen, eh? The way I look at it all is that they need to do all the tests they possible can to figure out what it is — and to RULE OUT what it’s not.

Wish me luck!

(Seriously, at this point, please don’t say shit to me like “I hope you feel better” or “get well” — I don’t “feel bad”, I’m not ill. and I’m perfectly healthily otherwise. Last week when I mentioned the spleen I got a lot of that sort of sentiment on Facebook. It made me nervous.

The only reason I’m writing this is to get my thoughts out of my head and onto ‘paper’ so to speak — and the only reason I’m posting it is to easily update people that care about me as to what’s going on. So humor, inappropriate jokes, and ”good luck with your tests” is all I’m looking for right now.

Oh, and you can ask questions if ya want to as well… I realize this is just a quick summary – long story short – I have an enlarged spleen & I’m getting more tests to figure out why.)

Quick update – July 1, 2011 – PET scan found some low level activity in the spleen — but only in the spleen. Basically, we’re still looking at “remove the spleen, remove the problem”. Spleen is non-vital, Liver does what spleen does. Had bone marrow biopsy today (discovered a new kind of pain). Will get those results in a couple weeks, then most likely move forward w/ splenectomy.

Quick update – July 21, 2011 – Bone Marrow came back *normal*. So, we still don’t know exactly what the ‘low level activity’ in the spleen is — but the doctor thinks it’s most likely something called “Marginal Zone Lymphoma”. Relax. It’s not as bad as it sounds. It’s a low-grade lymphoma… and thus far the treatment is simply “remove the spleen”. So, we’re getting that set up.

The main risk in being spleen-less is that you’re at a higher for some serious infections. So, what you do is get some vaccines and you’re mostly covered. I had those 3 vaccines yesterday. I also found out that the surgeon I was referred to can not meet with me until Sept 6th. So, I’ll double check with the hematologist – but most likely, that means that I just wait until September. Which, I’m guessing is no big deal since I’ve had this condition for 6 or 7 years – another month or two ain’t gonna make a difference.

Aug 19th Update – Home From Surgery

Alright – I had my spleen removed. I’m home recovering right now. It was about the size of a football… Larger than our largest organ, the liver… VERY BIG. Surgery went as well as can be expected. Recovery is going as well as can be expected. I’m walking up and down stairs, to the store, etc. I’ll spare you the details – but the funny thing is my wife and I will have a matching scar. (my incision is the exact same size as her c-section LOL)

Anyway, at this point, I’d like to pass on a bit of wisdom and move along. So, Here is the big LESSON LEARNED:

Pay attention to your body, do a little research, and push harder with your doctors.

I’ve had low platelets for years. I’ve also had a difficult time taking deep breaths for years.

When diagnosed with low platelets, my doctor felt around and didn’t notice the enlarged spleen (a year ago). When I told my doctor about the deep breath thing, she said it might just be anatomical – and didn’t even check for anything putting pressure on it.

Now that the football sized spleen is out – both problems are fixed.

The enlarged spleen was only discovered after *I* noticed a fist sized lump in my abdomen (turned out to be the tip of a football sized iceberg / spleenberg??)

Why did my spleen get so big? We still don’t know. We’ll know this week for sure. We’ve ruled a number of things out. Could be something as simple as an infection years ago that caused it to start malfunctioning or something. Visibly it does not look malignant, although the PET scan indicated otherwise.

Anyway – moral of the story — PAY ATTENTION TO YOUR BODY and PUSH FOR ANSWERS.