A blog about us…and journey with Melanoma

Survivors.

My blog has been bugging me. Sometimes I feel its too negative.  I want to share stories of melanoma…..but I don’t want to scare.  Well, I kind of do.  Sadly I don’t see any other way to drive the point home.  The majority of people I meet just don’t understand how serious this type of skin cancer is (I was one of these people one year ago).  Even some people with melanoma don’t understand the seriousness.  But for all of the horrible stories about melanoma, there are as many good ones.  So in an attempt to get the right balance, I have updated the blog and separated the pages into two sections – the stories of devastation and the stories of survival... which include those who are surviving with Stage 3/4 melanoma.

For me, it’s really great to chat with those who understand… my “melanoma friends”.  Our friend Christina recently moved to Stage IV, which was devastating, but she is such resourceful person and went into major research mode.   After talking with the top docs and other survivors, she picked a very tough therapy (biochemo) and stood by it even though some people said not to do it.  This week she sent me a note from the hospital (where you stay for 5 days in intensive care while they administer the drugs): her tumors are shrinking after just one round!   I am so happy for her.

Last night we watched the newest episode of the Big C and I cried and laughed through the entire thing.  Its so great to have a show we can relate to.

And this week it was so cool to Sykpe with Andrea – aka “Melanoma Girl“.  She is a stage IIIa survivor just like Mike and she is starting a non profit organization.  She had just gotten her scan results and they were all clear.  So happy for her also!  We are trying to organize a charity event and she has some great ideas… so stayed tuned.  How cute are her t-shirts?  I am going to get one for myself:

Get your shirt at http://www.melanomagirl.com

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6 responses

  1. Randi

    Randi, thanks for sharing your survival story!! It made my day. Stage 3 melanoma is a weird place to be..you don’t “look” like you have cancer, there is no typical cancer treatment that makes you look sick (besides interferon which makes you feel horrible) so maybe that is why people don’t get it? My husband forgets he has melanoma most days but I wish I could

    August 29, 2010 at 1:13 pm

    • Somehow I managed to delete Randi’s post! Randi’s comment was:

      Its so scary that people dont understand the seriousness of this cancer. Even when I try to explain it does not sink in-they say it wont happen to them. I have been 5 years at stage 3c and there are many survival stories but with many scars both physical and mental and of course the threat of reoccurence at any moment…but life does go on. I work and have a teenager and some days I dont even think of melanoma- randi

      August 29, 2010 at 3:19 pm

    • Randi

      Yes-stage 3 is a strange stage. You are absolutely right! You dont look sick as a matter of fact no one would ever know. I did do high dose interferon for 4 weeks and only lasted a few weeks on the shots-they caused such severe mental changes I stopped them immediately. I try to live each day to the fullest but you do fall back into a regular routine sometimes forgetting about living in the momoent (I guess that is a good thing) thanks for sharing your blog it makes people feel connected.
      randi

      August 30, 2010 at 12:39 am

  2. Karen van Druten

    Hi everyone. I’m bored as bat shit recovering from my third occurence & surgery to excise a thigh melanoma from the same spot. I thought I was pretty lucky in 1999 with no lymph node spread. 2005 same thing but this time 2 serious melanomas. Again no spread. 2 weeks ago an infected lump popped up. This time PET scans no spread but when it was removed the surgeon indicated that it was a big golf ball size melanoma. So along with another melanoma survivor friend we call this dazed post op period the WTF**k stage. I realise how fortunate I am when I read your blog and yet the years of readjustment, exercise and reincorporation makes for a rough trot. It’s all so fast and yet you are never sick. Me and my 15cm scar/staples are off to work! Karen

    May 23, 2012 at 3:56 am

    • Karen – I am so sorry you had a recurrence – it concerns me that they didn’t see golf ball sized melanoma on a PET scan!? Will you do therapy? Can you get Yervoy in Australia? Do you know Jay Allen – he is a great source of help in Australia – please contact him – jayallen@sunbedban.com – TAKE CARE – Emily – PS Melanoma is such a sneaky stinking beast!

      May 23, 2012 at 9:10 pm

      • Karen van Druten

        Thanks Emily. Yes the PET scan did show the melanoma. Havent heard about Jay but will look him up. Beast – more like a weed! Keeping pulling them out and up they come again. Thanks for your comment

        May 24, 2012 at 3:33 am

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