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!!