My oh, Mycosis Fungoides!

Here’s a funny joke for you–last Tuesday, April 5, 2016, I celebrated five years since the cancer was removed from my left one.  Most people would celebrate with cake, maybe a new dress, a trip to the bar…not me!  I celebrated by finding a new dermatologist associated with NYU in hopes a fresh eye might be able to finally diagnose the strange rash I’ve had for YEARS.  It first became bothersome in 2010, but it has exhisted with me over the years, sort of like a strange hidden twin trapped between the layers of my dermis.  I knw this was an EVIL twin, and, after swearing off doctors for about a year, decided to give someone else a chance to play ‘Guess the Disease.’

Dr. Yona (of course, not her real name) is not just a board certified dermatologist, she is a MD, PhD, who teaches as NYU on Thursdays.  Dr. Yona was very straightforward with me after hearing my long tale of woe and disbelief.  “You deserve a diagnosis.  I believe this is a form of cutaneous lymphoma called Mycosis Fungoides.  It is very hard to diagnose. It’s not surprising you haven’t gotten an answer after all this time.  I’m sending three biopsies to two different labs to see what comes up.”  I left her office a little lighter than when I went in, albeit, unable to sit.  The best place to do a biopsy for this disease, it turns out, is where the sun don’t shine, and she made sure I wouldn’t be able to sit on either cheek equally.

After I was gauzed and covered, I was told to make an appointment to have the stitches out.  “It has to be the Monday of the week before Pesach, I’m sorry!” The office staff is mostly made up of wig wearing Jewish women, like Dr. Yona herself.  Do I feel out of place with my tichel?  No, I feel sorry that they have to wear someone else’s hair on their heads…but I digress… I’m given my 2 week followup and am told “Unless it’s something bad, we’ll tell you the results of the biospies when the stitches are removed.”  That seems reasonable.  I’m given some Aquafor to use on the biopsy sites and sent on my way.

I really didn’t think about the fact that really, there was no “good” answer for my rash.  Either it is a horrible rare cancer, a horrible blistering disease, or celiac disease in my skin.  None of those are really fantastic choices.  I was hoping for the easiest to manage–the celiac in the skin–but then I ate some spelt pretzels and nothing happened.  Dammit.  I knew it wasn’t the blistering disease.  In my heart, I knew it was cancer.  Again.

All was going fine and well.  My dear hubby helped me clean my biopsy sites since I really do not have my head there as I’ve been accused of in the past.  Things were healing nicely, till Sunday, when the doctor’s secretary called.  “Good morning, the biopsies are in and Dr. Yona wants to speak with you tomorrow.”  Shit.  That isn’t good.  Since I’ve entered the world Cancerific, I’ve had a few Sunday calls.  Never has one of them been good.  Unfortunately, I’m booked that day, so I have to make the appoinment for Tuesday afternoon.  Uff.

Tuesday morning.  I give one of the worst lectures of my life.  I’m off because I’m nervous.  While I’m watching the clock count down till 1 pm, the appointment time, I get a text from my faux daughter.  This lovely lady came to visit me when I was in the hospital in September.  She is so thoughtful, someone thought she is my daughter.  Now she just pretends and I am so blessed.  Text reads…” Do you want me to come with you to your appt?”  I’m telling you, this woman is from Heaven!  Of course I want her to!  She also agrees to pick me up, sit with me in the doctor’s room while I’m given the bad news–it is a form of CTCL called Mycosis Fungoides–the least desireable of all my options– to take notes, hold me while I cry, and drive me  home.  Truly an eshet chayil!

I’m not entirely sure what happened after I was told I’m cancerific again.  I got home, broke down, sent Hubby a text that he had to come home, then I stayed in bed and woke up today.  Dr. Yona is supposed to talk to the expert today or tomorrow so we can stage my cancer and discuss treatment options.  I appreciate all prayers, no matter the language.  He hears them all.  Jokes, too, because based on this story, He has to have a great sense of humor!



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5 Responses to My oh, Mycosis Fungoides!

  1. Holly says:

    Oh, no! Saying prayers for you, Funny Girl!

  2. Sara says:

    Miriam, you will get through this as you have gotten through things in the past.
    We will all be praying for you. Let me know when you can use my help.

  3. Jill Garvin Frankel says:

    Miri- I was so saddened to read your FB post yesterday, yet not surprised. You will do whatever treatment your docs recommend and you WILL get through this with grace and humor because that is who you are. You are a fighter – you got this!! You are in my thoughts!! – jill

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