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When It Rains.....It Pours.....

Tuesday, July 15, 2014

Those of you who are my SP friends already know that my daughter is getting married in less than 3 weeks. She is our only girl - and she is a really awesome young lady. She is very grounded and this wedding is fairly laid back. But it IS a wedding - with 8 attendants and she is expecting 250 guests. Not a small wedding!!
So - safe to say there has been enough stress to go around!!

Add to it - that I have just been diagnosed with some weird and rare cancer.

Several months ago I got a very odd rash that over a period of several weeks spread over most of my torso. Eventually I decided that it wasn't heat rash or something else explainable and I contacted my dermatologist. Unfortunately he couldn't/wouldn't see me for 4 weeks. I explained that I could not wait that long and the staff said they'd put me on their cancellation list and perhaps I could find someone else who could see me. I chose to go to my local Urgent Care because I really didn't think this was going to be a big problem. The Urgent Care MD - is a really great guy - he really didn't know what it was either but he made a good educated guess that it was nummular eczema and put me on a oral steroid. After 7 days on the steroid, the rash has stopped spreading - but wasn't gone by any means....so I finally made an appointment with the dermatologist for 3 weeks later. By the time I saw him there was not a lot of rash left - but enough to biopsy - because frankly he had no idea what it was either.

And the biopsy came back as mycosis fungoides which is the most common cutaneous t-cell lymphoma. It is pretty rare - probably about 30.000 people in North America have it. It is incurable BUT quite treatable, especially when caught early. I do feel blessed!! I have others in my life that are fighting life threatening cancer at the moment.

But my problem is this.....I cannot get a dermatologist to see me before the end of August. My GP told me that because my diagnosis is Stage 1 that I do not need an oncologist - only a dermatologist. He said this is chronic and I will be seeing that Dermo Dr. regularly from now on so I need one I trust and click with. But I cannot get one to even see me right now. I have very limited info on this disease. I don't know how it transitions to the next stage. I have no idea how easily it goes into remission. I already have the symptoms (rash) back from the treatment in May. And yet - no doctor is even interested in seeing me with the symptoms.

I can say this - I am so frustrated. This disease, if treated properly, won't kill me - but it is invasive and appears to be uncontrolled at this moment....and I cannot get the medical professionals in my area to give a darn.

If any of you know anyone with Mycosis Fungoides - I would love to know it!!
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Member Comments About This Blog Post
  • EMGERBER
    emoticon your deserve answers and proper health care. emoticon
    1129 days ago
  • MILTONS_MAMA
    I found a site you might like, it has a lot of helpful info:

    http://www.mycosisfung
    oides.org/

    I'm sorry no one is seeing you. According to that website I saw, you should be getting treatment regularly. Perhaps your regular doctor can help you now that you have a diagnosis. Or he can get you a referral. Otherwise, you're going to have to go to the Urgent Care place every time the rash gets bigger, but that's not really fair to you. It could stay small and possibly go into remission with regular treatment.

    I wish you the best of luck with this, God bless you!
    1779 days ago
  • LAIKYNSNANNA
    I'm sorry I'm just reading this blog. I'm not sure which Dermatologist you tried, but my husband went to see Dr Bender. I believe there's an office in Daphne & Mobile. The phone # is 251-631-3570.
    1994 days ago
  • MALEXANDER4
    Wow Pam your going through it. My prayers are with you. Maybe your going to have to head to florida to find one. Do what must be done. Keep us posted please. Congrats on the wedding and it will all work out fine. Weddings just have a way of coming together.
    2013 days ago
  • CAKAROO
    emoticon emoticon
    2013 days ago
  • JUNEBUG1944
    I am so sorry, Pam. We do not have enough dermatologists down here, for sure! I suppose you have tried Haley in Fairhope. Has your doctor called a derm with a referral? Just for the heck of it, why not call an oncologist and see what she/he has to say. I wish you the best. I know the wedding will be wonderful!
    2013 days ago
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