In The Beginning…

My skin... all of it... had been unbearably itchy for years. I had seen my primary care doctor, a dermatologist, an allergist... everyone I could think of. Primary care doctor... looks like a rash, just take some Claritin. Dermatologist PA... try these pills, creams and ointments. Skin biopsy showed nothing other than a rash (or whatever "spongy dermatitis" is.) Allergist... all the allergy tests came back negative, no allergies. Blood tests showed some numbers out of the "normal" range but when I asked my PCP about them he wasn't concerned. But still the itching. I couldn't sleep so I was always exhausted. I had literally scratched holes in my skin leaving bleeding sores all over my legs and arms (gross... sorry). For totally unrelated reasons, I had to switch to a new PCP who recommended a different dermatologist. It was only a matter of seconds before she told me I had horrible eczema. (I had asked my initial PCP about eczema specifically and he very definitely said "no" to that.) But I was SO happy to finally have a diagnosis that could be treated! (Mind you, this itching had been going on for well over 5 years by this point.) But finally there was a treatment plan so potential relief was finally in sight! And the meds they prescribed for the eczema made some progress. Hallelujah! But then I noticed a growth on my face under my left jaw. I asked the dermatologist about it and she said that was likely a part of the eczema and would go down as the eczema was treated. But it didn't. So she took a biopsy and (start the longest and most agonizing period of waiting I've ever experienced) the results came back. And they were absolutely the worst I could have hoped for. I had cutaneous T-Cell Lymphoma. And I would come to find it was both systemic (my whole body) and aggressive. Let me be clear though... am I mad this disgnosis wasn't made sooner? Absolutely. Was I royally pissed that my concerns seemed to have been completely blown off and I was essentially told to take some Claritin for what was a systemic aggressive cancer? Damn right! Am I looking to start a malpractice suit because of a misdiagnosis because no one would really listen to me? Not at all. Let's be honest, if you go to the doctor, look like you have a rash, and are itchy, they probably aren't jumping to "cancer." In hindsight, were there indications that they probably should have looked into a little harder? Probably. But that's the past. I'm not looking in the past. It's easy to "Monday-morning quarterback." I'm looking FORWARD. I'm fighting this. And looking backwards and getting pissed isn't helping anyone. So now we know what we're dealing with. Obviously I wish it was eczema. But it's not. So we don't look BACK. We look FORWARD and we fight our asses off and beat this thing that it is, not wallow in pity over what we wish it was instead! This fight is on! Steve