Finding Ninee » Sharing our parenting and special needs stories with heart and humor.

Ocular Melanoma, Forget the flowers, saying the word autism is hard, and a solution for bath fear

Hi friends,

It’s (really late) Sunday night.  Isn’t it strange how that happens?  It’s like all of a sudden BAM it’s Sunday and another week’s passed in the ever more escalating aging-I’m-growing-more-wrinkles-by-the-minute process and holyshit I have an undone to-do list.

Oh…this doesn’t happen to you?  (Liar.)

I promised a quick recap from this week.  But first, I want to talk to you about something important.

Have you heard of Ocular Melanoma?  Me neither, until recently.  Although we didn’t share it a lot (as in I haven’t written about it), when Tucker was three weeks old, Robert had to have a 4×4 inch patch of skin removed from his upper back/shoulder area due to a melanoma.  He had a renegade mole that went flat and black and became obviously bad really really quickly (check your skin, friends).  Of course at the time, having a brand-new three-week old baby, we freaked out and haven’t really finished doing so (me, not him).  Anyway, ocular melanoma is – from what I understand – sort of kind of the same kind of thing but IN YOUR EYE.

I know.  Right?  Anyway, one of the moms I’m getting to know from Tucker’s preschool has ocular melanoma and was in a race Sunday to raise money for research.  How can you help?  There’s a website that you can donate to right now.  Please be sure to click on her name (Gayla Timm). Yes, they met their goal of $5,000.  But let’s face it.  The more money we can throw at cancer research, especially when it involves children and the mothers of children who really need them to stick around, we can’t lose.  Show my new friend Gayla some loves?  She’s on Twitter and Facebook and this is a super amazing awesome cause.

Here she is with her family on race day:

Donated?  Thank you!

Okay so here’s a random wrap-up from the rest of this week.  Do you remember when I told you I was terrified of the upcoming cicada invasion?  I was interviewed by the New York Times for that.  We’ll see if they chose to use any of my bug neurosis for their bug phobia article.  I’ll keep you posted.

Last Sunday, I asked that my husband forget the flowers for Mother’s Day and just give me some time alone.  While he did take Tucker out, they came home an hour and 45 minutes later.  Also, they purchased something for everybody in the family except  me.  Happy Mother’s Day.  (“But you just wanted to be left alone and come on, you didn’t really want me to buy you clothes from Target, right?”).  Right. And wrong, too.  I was mildly annoyed and later forgave him as he busied the boy for most of the afternoon so that I could get some work done and be here with you, my real cyber family.

I then talked with you guys about music and how it has the power to instantly transport us to another age, another life, another town and another moment.  It’s magical and amazing and strong.  You were able to see photographic evidence of the fact that Tucker will likely not inherit his dancing abilities from aliens and instead do the awkward white boy dance of misguided frat boys everywhere…although it does look like he’s snapping those baby fingers of his, so perhaps he inherited some rhythm from somewhere far up the ancestral branches.  Maybe.

We dissed about making bath time fun again which is one of those sounds-sortof-dumb-things that is huge in real life.  I am not joking when I say that Tucker went from hating bath time to actually enjoying it because of this one simple thing.  Intrigued?  Check it out.

Finally, I confessed that I missed an opportunity to bring Our Land closer to reality.  Because I am awkward and dorky and want to keep Tucker’s issues away from my workplace (mostly), I experienced shakyawkwardsmile and pit stains.  Fun.

In other news, Saturday night I had a mom’s night out with the most party-on excellent (party on, Garth) mom friends from Tucker’s class.  So much awesomeness.  I think it’s safe to say that we all had a blast although it was a little different from the I’m not-a-mom-yet blast I had when somebody should have been arrested and nobody (as far as I know) was shooed off of a stoop at 4am or accidentally given a ride home by a maybe shemale.  It was awesome.

Finally, I hope you all have a wonderful joy-filled Monday (is that even possible?).


  • Joy - Wow, that ocular melanoma thing sounds really scary. I have a mole in my iris, too, but I hope it is nothing serious. At least my ophthalmologist never said something when he checked it. And since I had basal cell carcinoma some years ago I have my skin checked for cancer every year. It is so important to stay healthy for our kids!May 20, 2013 – 3:46 amReplyCancel

  • Kristi - Joy,
    It does sound really scary. I’m sure your ophthalmologist would have said something if you should have it further looked at. And wow to the basal cell carcinoma – scary too. And so common. 🙁
    You’re right – it IS so so important to stay healthy for our kids!
    xoMay 20, 2013 – 9:44 amReplyCancel

  • Janine Huldie - Happy Monday to you, too. And heading over to check out about Ocular Melanoma and see what I can do. Thanks for sharing and will try to do my part!!May 20, 2013 – 11:18 amReplyCancel

  • Stephanie @ Mommy, for real. - Your Mother’s Day story made me cringe with recognition. I get it. And you are a good friend, reaching out via your blog for such an important cause. No wonder people love you so much!

    This was a good wrap-up. I am ditching mine for awhile because I can’t handle them anymore. Something needs to go… at least for awhile…

    Sorry this is so short, the teething, crying, pee-leaking monster is all over me.May 20, 2013 – 4:30 pmReplyCancel

    • Kristi - Stephanie,
      What’s up with the mother’s day failure stories resonating with so many of us? Sigh. And HAHA – not sure they love me but I recently got to know this woman and she’s really cool. She also has ocular melanoma. Not sure how much me posting helps, but if one more person learns about it and donates, than that’s something right?
      Ah the pee-leaking. Awesome.May 20, 2013 – 5:08 pmReplyCancel

  • Jennifer - I’ve never heard of melanoma in the eye. That’s really scary and I wonder how people know they have it? I don’t wear glasses so I don’t go to the eye doctor. How did Gayla find out? Is she having treatments?
    Thank you.May 20, 2013 – 5:16 pmReplyCancel

  • Jennifer - Do you think she could tell us some of that? What to look for and what her treatments and prognosis is?May 20, 2013 – 5:19 pmReplyCancel

  • Kristi - Jennifer,
    I had never heard of it prior to meeting Gayla either. Regarding what to look for, how she found out she had it and whether she wants to share her treatments here, I can ask her. There’s also some information on her Facebook page – did you go there? Thanks.May 20, 2013 – 5:21 pmReplyCancel

  • Jennifer - I did go to her FB page but didn’t see anything about screening or what to look for. I went to her web page too and mostly it’s about the walk.May 20, 2013 – 5:25 pmReplyCancel

  • Kenya G. Johnson - OUCH! I just googled ocular melanoma images. I have a spot on one of my eyes – but the eye doctor called it something else. Strain vessel something.

    I was mildy annoyed at my Mother’s day too – didn’t feel like blogging about it. I didn’t get my K charm – that was the icing on the no cake.

    Loved the bath post! Hope it continues to work.May 20, 2013 – 7:28 pmReplyCancel

  • Kristi - Kenya,
    My husband and I both have a spot on our eyes, too and are sort of freaking out now. NEVER GOOGLE. Ever ever ever. And boo to Mother’s Day being less than it can be. I say you buy yourself your K charm. And me one too (because Kristi with a K).May 20, 2013 – 9:46 pmReplyCancel

  • Kristi - Jennifer and Joy,
    if you’re only subscribed here, come back and check out Gayla’s comments back to you on FB.May 20, 2013 – 9:54 pmReplyCancel

  • Gayla Timm - I made some comments above, but they are through Facebook so not sure if this way is easier to see/respond to…

    Jennifer, eye exam (dilated by an ophthalmologist) is the only way to detect it. And because it is rare, most opthalmologists don’t even know what they are seeing. If they see something unusual they should refer their patient to an ocular oncologist or at least a retinal specialist with oncology experience. All moles are not cancerous (they call a mole a nevus), in fact about 10% of the population will have one (mostly benign). But if they grow to a certain size they are deemed to be cancerous. I saw 3 doctors in 3 cities of 6 years that watched my nevus grow but told me it was fine. Most retinal specialists are not trained in proper diagnosing of OM. After the 3rd doctor told me everything was fine (but the size was growing and growing), I knew something wasn’t adding up right and I went for a second opinion in Philadelphia to the Will’s Eye Hospital at the Shields Oncology Clinic (they treat something like 25% of eye cancer patients in the US). It took them about 1 second to tell me I had a melanoma and they had me in surgery (to implant the radiation seeds on my eye) 3 days later.

    There are no drugs to prevent metastatic spread. Once the disease has spread there are experimental drugs/treatments that do buy some people more time. But not all. A friend of mine was diagnosed less than 2 years ago with her primary tumor in her eye. By last March (2012) it had spread to her liver and she passed away this week. It can be a horrible and vicious disease.

    My prognosis though is good. My tumor was on the smaller side (a “large” small) and my biopsies have had characteristics that make it seem less aggressive. But I have to have scans of my liver and lungs every 6 months, pretty much forever. This is a disease that can spread after 10, 15 , 20 years….it is not one that is 5 years out and “you’re cured”.

    It is rare – only 6 in a million get it each year…. But it strikes a variety of people. You won’t get it, but do yourself a favor and get a dilated eye exam anyways. Every year would be good, but get at least one to start!

    Here is some info on OM on the Melanoma Research Foundation’s Website (under their CURE OM umbrella): http://www.melanoma.org/learn-more/types-of-melanoma/cure-ocular-melanoma/diagnosing-OM

    And here is link on my website with other links (doctors/foundations) that have info on OM: http://1000milesom.com/learn-about-om.html

    Thanks so much for your support and reading and learning. We want to educate everyone about the existence of this disease. Go get an eye exam!

    Kristi, thanks so much for sharing!

    Gayla
    1000MilesOM@gmail.comMay 20, 2013 – 10:00 pmReplyCancel

  • Shay - How sweet of you to help your friend out, and it sounds like you had a wonderful, productive week–awkward conversations included, b/c you used it to teach us a thing or two! Keep it up!May 20, 2013 – 10:00 pmReplyCancel

  • Gayla Timm - Hi Everyone – thanks for your comments about ocular melanoma. I posted a bit above with facebook, but not sure if you’ll see those…. here is a bit more (if/after you read the other posts)

    Here is some info on OM on the Melanoma Research Foundation’s Website (under their CURE OM umbrella): http://www.melanoma.org/learn-more/types-of-melanoma/cure-ocular-melanoma/diagnosing-OM

    And here is link on my website with other links (doctors/foundations) that have info on OM: http://1000milesom.com/learn-about-om.html

    Thanks so much for your support and reading and learning. We want to educate everyone about the existence of this disease. Go get an eye exam!

    Kristi, thanks so much for sharing!

    Gayla
    1000MilesOM@gmail.comMay 20, 2013 – 10:03 pmReplyCancel

  • Gayla Timm - Sorry for the excess repeat comments….good with facebook, fundraising, and being mommy to a special needs child…not so good with blog commenting! So sorry to Spam your comments Kristi!May 20, 2013 – 10:05 pmReplyCancel

  • Kristi - Gayla, spam my comments anytime! And thank you again for sharing your story with us! AND OMG I need to go to the doctor already. Bad bad me.May 20, 2013 – 10:27 pmReplyCancel

  • Jennifer - Ok yes that is the information I was looking for. Cancer runs in my family but our health insurance isn’t very good about preventative care. My brother recently discovered he has several melanomas on his skin so I want to get a screen but when I read this I realized I never had an eye exam. So thank you, now I know what to look for. I will try harder to schedule it.

    Thank you for sharing your story Zgayla and Kristi. I never know what to expect when I come to your blog but I’m glad you told us about this.May 20, 2013 – 11:53 pmReplyCancel

  • jen - I wish you lived in my head, then I could listen to your awesome sense of humor 24/7 and not always walk around pissed and tired. hmmmm….
    AND HELLO?! NY TIMES?May 21, 2013 – 11:15 pmReplyCancel

  • Kristi - Jen!
    i do live in your head because remember that post about “I always feel like…somebody’s watching me?” Ha (kidding I don’t really live in your head although I’d love to as your brain works awesomely and it’d be cool to experience it first hand). And I know NY TIMES. But she might not use me in the interview. So there’s that. I was in Washington Post forever ago….and nobody said anything about it.May 21, 2013 – 11:51 pmReplyCancel

  • Kimberly - Dude, I so wanted alone time too but we hosted a BBQ.
    I don’t like gifts either so we buy flowers for my garden. We buy them anyways 🙂
    I love that you support so many causes. I’ve never heard of this before. It sounds so scary. I’m glad that there is a fundraiser to support it because it also brings awareness.May 24, 2013 – 1:11 pmReplyCancel

  • Kristi - Kimberly,
    I’m so glad you got flowers for your garden. That’s what my hubs did for my first mother’s day…I have not planted this year because I fear the cicadas rising in the ground…dumb, I know. <3May 25, 2013 – 10:10 pmReplyCancel

  • Melissa - Had never heard of ocular melanoma, so thanks for the heads up. Although now my husband will hate me for nagging him about having one more thing checked. 🙂
    p.s. i love that you worked Wayne’s World into this post. You are awesome.May 27, 2013 – 1:34 amReplyCancel

  • more information - Hey there just wanted to give you a quick heads up. The text in your article seem to be running off the screen in Safari.January 11, 2014 – 8:30 amReplyCancel

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