A Currently Incurable Summer Vacation

I just wanted to give a brief personal medical update and my related summer plans!

With the exception of my diagnosis summer (2012) when potentially curative chemo was given ASAP, I have always had the “goal” (when medically possible) to take summers off from treatment.  Even though I am terminally optimistic, I am also realistic… part of Stage IV life is thinking through the memories you are generating for your kids – memories they will have for the rest of their lives – whether I am successful in my immunotherapy project or not.

What memories do I want my kids to have of me whether I die in 2017 or 2037 or hopefully even later?  I want them to know I fought my hardest to be here for them.  I want them to know that I tried hard to make the world a better place than it would have been without me.  Those are my most important memory goals on the big level but important family memories are also based on the more simple day-to-day level.

When I think back to my childhood, my memories always congregate onto two areas: Christmas and summers.  Carefree summer days, playing outside until sunset, swimming in a pool or at the beach almost daily, family vacations… These are the memories I cherish from my childhood. So on a simpler level, I want my kids to have the most carefree summer memories as possible.  So I always take summer off from treatment whenever medically allowed (or at least medically “tolerated” as is sometimes the case – I am kind of a pain in the butt for my oncologist – but things have worked out OK for me so far and I think he likes me 🙂 )

I started a chemo break about 3 weeks ago but it was tentative break.  I hoped to have the summer off but whether or not that would be possible would be based upon the incredible impact of the one little number I have written about before: my monthly CEA blood tumor marker test…

My CEA tumor marker blood test came back good this morning!  This means a few things, all significant!

  • My tumors remain sensitive to FOLFIRI chemotherapy
  • I can remain off FOLFIRI chemo until at least mid-August maximizing summer fun with the kids (although we would have had fun no matter what)!
  • It also means my white blood cells will be very healthy while we wrap up lab experiments this summer for my planned immunotherapy experimental therapy (things are looking really good so far by the way!  “Hopefully” dosing will start in the Fall after a quick blast of chemo to get down to minimal disease!)
  • I also had a melanoma 6-month checkup on Monday – all clear at the 1 1/2 year mark!

So not a bad week at all for me…

I have faith that no matter what my melanoma and CEA test results could have been… I would have generated good memories with the kids this summer regardless of doing chemo or not.  I personally know hundreds of survivors doing this successfully as I type this post.  That being said, it still feels good to have a summer vacation from FOLFIRI… FOLFIRI is rough on both me and the family and after 6 months on it, we were ready for a break…

And for that opportunity I am very thankful.  No matter what your situation, enjoy making some good memories the next couple of months.  That is what summers are for.

2016-06 Fathers Day Pool Party

Dad, Amelie & Eleni celebrating the 2016 Father’s Day & start to summer

12 Comments on “A Currently Incurable Summer Vacation

    • Awesome for your good news and beautiful family. I hear you about creating positive memories, but also want to pose the opposite of as long as not pressuring yourself that every single moment has to be perfection. When I was diagnosed 31/2 years ago with an extremely rare aggressive sarcoma cancer one of my freak outs was not being able to ‘be normal’ around my then teenage kids and yell at them for leaving dirty dishes in the sink, stinky gym socks on the floor or worse, leaving the gas tank empty etc. without feeling incredibly guilty, like every moment as a cancer momma I had to be perfect with my kids. I do want to create positive memories, but I also let it go about those average parent moments and less than perfect wife moments, cancer makes me a better person, but not a saint.

      Like

      • Hi Laurel, Thanks for your comment – I agree with you completely… that is a perfect way to phrase it “…a better person, but not a saint”. My girls still get the angry Dad voice when required… 😉 I want them to have plenty of happy memories but I also want them to be prepared for life – which does involve less than fun things like discipline too… Thanks for reading and sharing your thoughts – take care, Tom

        Like

  1. Tom,

    As you are a cancer researcher, I am sure you already know this. However, your audience may not. Contracting colon cancer at such a young age is rare. I know – I contracted it at age 18. If one does contract colon cancer at such a young age, it is imperative that he/she be tested for Lynch syndrome. I was adopted so I am unaware of any family history. Those having Lynch syndrome are also at risk for female cancers as well as various skin cancers. After getting tested, I had my 3 children tested. My daughter is positive for Lynch syndrome and we have begun monitoring her. She had her 1st colonoscopy recently at age 14 – everything came back negative. My thoughts are with you and your family as you continue your battle.

    Liked by 1 person

    • Hi Pete,

      You make very good points that are good to reiterate for my reading audience. I was of course tested for Lynch Syndrome ( as well as a a follow-up whole genome sequencing of my entire germline genetic sequence) to look for any known hereditary cancer causing genes to watch for in my own kids. In my case, no known genetic direct drivers of early-onset CRC were found. That being said, empirically I got young age CRC at age 40 – so my 2 girls will have to start colonoscopies (or whatever equivalent technology is available at that time) when they are in their 20’s.

      Knowing whether or not you have Lynch syndrome is not only important for all the reasons you listed but also because it will make you MSI-high which has huge impacts on treatment planning and probable response to immunotherapies which I have written about extensively, https://adventuresinlivingterminallyoptimistic.com/2015/10/14/the-faces-of-successful-colorectal-cancer-immunotherapies-vol-1/

      Thanks for your informative and caring comment for my readers – all the best,
      Tom

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Avonturen_in_het_ongeneeslijk_optimistisch_leven

Scroll naar beneden langs de grote bomen:-)

My Cancered Life

Relentlessly Attacking Cancer Through Fitness, Family, Advocacy, and Laughter

Dobrodružství_terminálně_optimistického_života

Přejděte dolů kolem velkých stromů :-)

Aventuras_Viviendo_Terminalmente_y_Optimistamente

Más allá de los grandes árboles :-)

乐观地和绝症一起进行人生冒险

向下拖动滚动条看看大树底下 :-)

Приключения_безнадежного_оптимиста

Пролистайте вниз мимо больших деревьев :-)

Cancer Riot

Scroll Down Past the Big Trees :-)

SugarCone Biotech

Research and Development - Analysis, Consulting, Investment

Fightin 4 Blue.org

Colorectal Cancer Awareness

Tami Boehmer | Miracle Survivors

Just another WordPress.com site

Adventures in Spiritual Living

Riding the spiritual waves of everyday life

life and breath: outliving lung cancer

for the terminally optimistic

%d bloggers like this: