Monday, May 14, 2012

My Story


My story begins in 2003


I have a freckle on the inner corner of my eye, and I notice a tumor growing on the surface of the white part of my eye. My opthalmologist operates on me. I get a phone call two days later, with him telling me that the initial pathology looks like malignant melanoma and that he can no longer see me.

Treatments begin

Over the course of the next few years I undergo at least ten to twelve surgeries removing the freckled pigmentation that is my melanoma. The correct term is Primary Acquired Melanosis. I also have proton beam radiation and topical chemotherapy eye drops. Never even knew there could be such a thing! The picture above is what my eye looked like.

Things Change in 2006

I feel a lump under my jaw in November, have a fine needle biopsy, and lo and behold, the melanoma has gotten loose. My ocular oncologist thought this would never happen. I undergo a radical neck dissection.


I find out after the dissection that I also have a tumor on my lung. This shoots me straight to stage IV, completely bypassing stage III.

Next Adventure, Biochemotherapy

I go before the tumor board and the chosen treatment in 2006 and the only one offered to me was Biochemotherapy. If I did not choose this toxic treatment I could die between 6 and 9 months. No way! I chose the Biochemotherapy. I had to have this treatment in the hospital for 5 days each month for 6 months. Another ingredient added to the mix is IL-2.

Six Months Later

After the Biochemotherapy I have 12 months of High Dose IL-2. If any of you have had Biochemotherapy and/ or IL-2, you can agree with me that you will never feel so awful, ever! Oh, and I also injected myself between hospital stays with Leukine and IL-2.

One Year Later

March of 2008 I complete my treatment. I didn't know that you start counting from the beginning of your treatment in terms of remission. So at this point I am NED (No evidence of disease). I remained free of the Primary Acquired Melanosis until...

 2011

I start developing the pigmentations like pictured above, except now I am getting the pigmentation on my eyelids too. My oncologist refers me to Wills Eye Hospital and he thinks I should have my eye and eyelids removed, so that's what I do. I have an exenteration (lids and eye removed) in October. The doctors use a graft from my thigh in which to cover my open eye cavity. After a grueling 10 hour surgery and another surgery the next day, my eye is gone forever.

Here is my skin graft for my eye covering

This is what my leg on my eye looks like :)

2012

I am doing well, I am going back to Philadelphia to remove some of this skin so I can support a prosthetic eye and surrounding skin. I am due for surgery on June 22nd. I am NED still and will keep you updated when I have my surgery! Thank you for reading!

Here is my support system


 


7 comments:

  1. Best of luck to you on your continued journey - I am NED for 2 years after melanoma on my thigh.... It sounds like you are strong and have great support!

    ReplyDelete
    Replies
    1. I do have wonderful support, I hope you do too! Congratulations on two years NED!

      Delete
  2. Hi,

    I have a quick question about your blog, would you mind emailing me when you get a chance?

    Thanks,

    Cameron

    cameronvsj(at)gmail.com

    ReplyDelete