Tuesday, September 1, 2015

upcoming scans and me...

In a few days I will have had CT's to neck, chest and pelvis with an MRI of my brain (again) with whatever results may come.  I was planning to give you an update once results were in hand, but on my run Sunday I decided that now, was better.  I am:

145 months post my original melanoma diagnosis in 2003 at age 39
65 months Stage IV (after brain, lung and tonsilar mets in 2010)
59 months NED
57 months after starting nivo (Opdivo)
27 months since my last nivo infusion

Yes, at age 51 with asthma and Stage IV melanoma I still run, hike (both for quite a few miles) and/or elliptical several times a week. I may not win any races, but I am happy with what I do.  Recently after making a pretty steep ascent in Cades Cove with what I considered good speed and minimal winded-ness, I asked B if he thought I would be in better shape at my current age had I never had my surgeries or anti-PD1.  He looked at me as though maybe I do have a brain tumor after all and replied, "You are a born athlete.  But, of course you would be in much better shape now had you NOT been through all that!"  Oh, well.  I don't know about a born athlete, but yes, I guess melanoma has stolen some things.

Despite what might be missing, I am very happy with my life and accomplishments.  I still think I help folks in my work.  My kiddos certainly help me.  I like my yard, books, dinners, music and friends. This blog seems to have given a bit of hope, information and encouragement to at least a few.  I am incredibly proud of both my children.  They are working hard, finding places of their own in this crazy world, and are making their way with energy and a positive spirit.  I am incredibly blessed to have been able to witness the wonder of their lives.  I am so lucky to share my life with my best friend (27 years baby!!!), who still smiles at me sweetly and thinks I am a "silly girl"!

I have moved on from, but can never forget, the incredible feeling of horror and despair upon hearing my original diagnosis.  Of course things were different then.  Treatment options were negligible in 2003.  My children were in middle school.  I was on the cusp of becoming the person I wanted to be in my career. And with great clarity, KNEW my life was irrevocably changed.

Folks like to say, "Don't listen to the statistics!  You are an individual, not a number."  I don't actually agree with that. Though perhaps, given my place in melanoma world...I should...and not for the reasons the other peeps contend.  According to statistics, given the size of my original lesion, I should never have had a positive node.  Given the limited, micro-metastasis in that one positive node, statistics tell us that I should NEVER have progressed to Stage IV melanoma.  Hmmmm.....  Life is what it is.  That doesn't mean I am complacent.  Read this blog for 2 minutes and you will not doubt that I am a fighter.  But, as a "scientist" (Yes, I always did want to walk in Madame Curie's footsteps.  And no, I have not found the new vaccines, antibiotics, or great cures to the world's ills that I dreamed of as a child and young woman!) or at least a "reporter and user of science" I think we can all learn from statistics....even when they do not represent our personal outcome perfectly.

So, with all that said, I face upcoming scans with irritation, tiredness, and resolution.  I hate being the patient.  I hate being poked and prodded...even though the ladies who have scanned me for years are the sweetest, most gracious and excellent at their jobs of any I have met.  I am tired of melanoma.  I know I am the picture of health and energy.  (Yes...that is on the list of what NOT to say to a cancer friend!!!)  But, I AM tired of melanoma.  It has been a long ride and I am more than lucky to be able to say that.  Melanoma could disappear from my life and that would be perfect!!!  But, it won't.  Ever.  So, I am resolved to being the best person I can be, melanoma or not.  I will deal with what I must, not because I am 'brave' or 'amazing'...but because that is what I and the approximately 73,870 melanoma peeps who will be diagnosed this year HAVE to do.....knowing that we are luckier than the roughly 10,000 who will pass this year from the same.

I am happy that at least I and my other peeps currently still have options....no matter what our scans may show.  That is something.  Now...I must go figure out proper, metal free scan attire so as to avoid any wardrobe malfunctions.  No, I will not wear a 'jogging suit' when I am not jogging.  No, I will not wear a 'gown'.  I'm not the patient, dammit!!  At least, not today.

Love, c


  1. Celest,
    hoping everything goes fine with your scans I'm sure you'll do fine. Also just wanted to say thanks for the amount of knowledge you put out there for people. I have learned a incredible amount by reading your blog and posts on mrf. I just want you to know how much it is appreciated.
    Thanks again,

    1. Thanks, Jamie. I appreciate your kind words. C

  2. But you ARE brave AND amazing AND my hero. And by God, you are 4.91666667 years NED!!!!! You have ROCKED this.

  3. I love you, Jeanne. You don't even know. How MANY times your messages have been just perfect. Can't wait to see you.

  4. You are definitely in better shape than most of us WITHOUT a history of cancer! I know it sucks to have to keep going through this stuff, BUT! You ARE a scientist! You may not be Madame Curie, but you are Madame Celeste! And you have and will continue to help many! So go out and show them who's boss, and have fun while you do it! I love you!

  5. Great Post Les,

    Thanks for waking me up,
    I need to get on with my life!
    I have stage IV melanoma in my lungs with more scans today, im very lucky to be on a drug trail, Keytruda.
    So here's hoping.
    I want to spend more time playing football and fishing with my grandsons.

    Great blog, with great info, best wishes to you and your family

    1. Thanks, Paul. You ARE getting on with your life and will feel more like you are everyday!! My fingers and toes are crossed for excellent scan results for you today!!! Have fun with those grandsons. What are you fishing for and what do you use for bait??