Bob update: A new journey

Bob and I at a wedding last year

I mentioned in a previous blog post that Bob has been diagnosed with a rare form of non-Hodgkins lymphoma -- a type that seems to target the skin, called cutaneous T-Cell Lymphoma (CTCL).  It's a tough disease to research in that the prognosis varies dramatically according to the staging (how far along the disease is) and other factors like age. Also the treatments have improved dramatically, so the survival rates in published research are out of date. It's all a big question mark: It can be a chronic but lifelong disease many people, or it can be more serious, but there is no cure.

Bob's health right now
Although Bob is plagued by a whole-body rash and relentless itching, he is otherwise in great health -- able to do his beloved Contra dancing, go to the gym, bike, etc. His dermatologist is good, and he has an appointment to go to a state-of-the-art treatment center for CTCL, UPenn on June 3. But we don't know what stage he is in, and we don't know much about treatments. He is currently receiving light therapy/phototherapy three times a week.

The patient is impatient
June 3 is way too far away IMHO. There are two forms of this condition:

• one which is considered "indolent" (Mycosis Fungoides, or MF) 
• one which is more agressive (Sezary Syndrome or SS), with a more guarded prognosis. 

We don't know for sure which he has, and I can't imagine waiting till June to get a proper diagnosis and staging. We pushed our local dematologist for a blood test called a Sezary count, which  is a rough way of diagnosing the agressive form of the condition, Sezary Syndrome. Basically they count the presence of abnormal T-cells, and it it is over 1,000, you can consider yourself diagnosed with SS. If he has this, treatment has to be expedited. June 3 is just not going to do it.

Blood tests: A cautionary tale
The moral of this story is, be curious and vigilant when dealing with the medical bureaucracy. Bob had the blood drawn on Monday the 11th. He noticed the lab attendant seemed very casual in filling out the paperwork. Bob saw her write CBC (blood count) on the paper, with no note about a Sezary count. He asked her about it and got a snappish reply, and any subsequent question was answered with "talk to your doctor," to the point where if he opened his mouth to pose another question, she just talked over him in a louder voice, "Talk to your doctor."  It is making my blood boil as I write -- that infuriating broken record response!

On Friday, Bob called the doctor for the results; the office staff can only tell him was that the test was "normal." Bob asked about the Sezary cell count, but there was no mention of it in the results. "The results just say normal," they told him, and the doctor was not available to help. I was in meetings all morning and the office was closed on Friday afternoon. Bob told me Friday night he felt sure that the Sezary test had not been done.

Quest for the answer
That was yesterday (at the time I'm writing). This morning (Saturday the 16th) we called Quest's 800 number. I have to say the staff member we spoke to was wonderful. She did indeed confirm that no Sezary count was done, and she told us exactly what had to be on the script in order for that blood smear to be performed. For the record -- I did not look closely at the script but I did review it. I'm pretty sure the doctor had written word-for-word what he was supposed to ask for.

Looking to the future
So after being on pins and needles all week, we're back at square one, and another week of waiting for test results. Monday  morning we're going to show up in the dermatologist office and ask for the doctor (he's pretty accessible in my experience).  I'm hoping we can expedite the test early this coming week.

Whatever the outcome -- I have a feeling this will be the beginning of a long medical journey for the two of us. We are blessed to live near not one but THREE treatment centers that specialize in this disorder (two in Philly and Sloan Kettering in NYC).