Sunday, March 17, 2013

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 Also the treatments have improved dramatically, so the survival rates in published research are out of date.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).


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  5. Every time I hear one of these stories from educated professionals, I wonder how many health solutions go amiss for less fortunate populations.
    Persistently ask questions! Go with your gut! Be strong!

  6. Sending good wishes to you both... I hope you can get some answers for Bob. Unfortunately when dealing with serious medical issues, it seems that the patient and/or his/her family really needs to be on top of things. Results get lost/misinterpreted or tests not vigilant and keep some documentation so you can remember what was done when and by whom. I've had to do that in the past and had to deal with a dr. who made a few mistakes - she sure didn't like me correcting her! ha! ;-)

  7. Working in thoracic oncology, I know from experience how important it is for patients to be their own advocates. If I were you, I would get an appointment at Sloan Kettering in addition. You are going to want another opinion besides UPenn. There may be different options for clinical trials at each of the institutions - and you WANT to be on a clinical trial if at all possible (they offer the most up to date and best treatment options). Waiting is terrible when you know that you have, in that vein I must say squeaky wheels get greased. Make friends (over the phone) with one of the nurses/schedulers at both U Penn and Sloan Kettering and call regularly to see if you can get in sooner. I would find out who the nurse is of the doc that you are scheduled with and keep calling that person. Ask to be on a cancellation waiting list, etc. But keep calling and calling and you will eventually worm your way into an earlier appointment. I really think you should go to both places though.

  8. Hi All, I'm an idiot! I accidentally deleted comments unintentionally -- have never done that before and there appears to be no "reverse" -- So sorry, please feel free to resubmit. I did read everyone's comments and I appreciate the thoughts and advice. Geez.

  9. Will be sending prayers your way for the best possible outcome. I'm so sorry this is happening.
    The good news is Bob has you, and you're a horse person. Horse people are generally more comfortable pushing and questioning about medical issues, I think. (The norm being we're used to patients who are unable to advocate for themselves.)
    We just went through a year of "stuff"...I'm not much for advice giving, every situation is so different. What has stayed the same: so important to review, watch, and politely push the envelope (or people) when our loved ones are going through medical situations. No one is going to love and watch over our family like we will. Lots of prayers from here!

  10. Oooh, I am just Gritting. My. Teeth. How DARE that woman dismiss Bob like that??!? Just goes to show you that a) we have GOT to be our own best advocates in every single aspect of health care and b) it helps when someone else has your back. (As in, if you've been there I bet that you-know-what would have gotten an earful) The older I get the more I realize this is true!

    I myself just had a bunch of blood and urine tests (21 in all) run to confirm that I have the disease the doctor suspected. I read the list of tests ordered. I read my chart (everything available to me online). They matched. If they didn't, I'd be asking questions. As I travel down my own road, I'm going to try very hard to be that PITA patient who wants to know and understand EVERYTHING that's going on. I'm looking into holistic/natural treatments as well.

    I am sorry you have wait more days for this important news, due that incompetent phlebotomist. The waiting sucks (and you're right, June 3 WAY too far away), but at least you'll know what you're dealing with. We are all thinking of Bob and hoping/praying that he has the less-aggressive form of the disease. So glad you have access to top-notch care! (My mother would like me to get on a plane and have my diagnosis confirmed in New York, as St. Louis is backwaters as far as she's concerned. We'll see!)

  11. Best wishes to you both. What a nightmare.

  12. It sucks to have to police your own medical care providers in such a way, especially when you are already physically not well. At least this incompetence took place towards the beginning of Bob's journey through the morass that is our medical system. I'm sorry you learned the hard way that you must be your own advocate. My thougths & well wishes go out to you two.

    K. Thomas

  13. Oh Stacey ... I am so sorry you and Bob are going through this. My heart aches for you. I think it should be an absolute requisite that anybody working in the healthcare industry have an ebullient personality and an impeccable bedside manner. There is NO excuse whatsoever for someone to be dour or curt in regards to one's sincere questions (especially in regards to a potentially life-threatening illness). That makes me sick. I hope you said something to someone and that horrible woman was disciplined.

    Also, yes, stay on top of it. I had a funny, gut feeling a rash I had on my knee was not simply granuloma annulare or tinea (it wasn't itchy or spreading). It was a loose bullseye shape. For what seemed like forever I kept asking for a Lyme's test and everybody said it wasn't necessary. Fast forward several MONTHS later and I was taking a killer dose of that evil Doxycycline for an extremely long time for ... you guessed it ... Lyme's. Because of how long the disease had to spread, I wound up with excruciating esophageal and peptic ulcers from the prolonged treatment and a few permanent damages from the illness itself.

    Even the best-meaning doctors can't know everything. It's always best to go with your instincts; the patient knows his body best.


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