There is Always Sun Behind the Clouds

It never ceases to amaze me how life is such a constant fluctuating mixture of highs & lows.  Maybe I am just hyper-observant now compared to the average person but as I began to write an update (I know many people are curious about the Melanoma) – I was astonished at the incredible range of “good” and “bad” events that have taken place in my life in just the past week! So even though I will give that Melanoma update, the other wider aspects of the post are going to overwhelm it!

First the “bad” (I like things to end on good notes – and sneak peek: the “good news section” is longer 🙂

I have to admit, getting that Melanoma news last week was a bombshell – a surprise kidney punch I never ever in a million years saw coming.  The possibility of trying to fight two serious cancers simultaneously at age 42 was not even close to being on my possibility radar screen.  It was a big enough shock to get one surprise cancer diagnosis in my early 40’s – to get a second one…… to put into perspective the odds of this happening: when I asked both my VERY experienced CRC oncologist and my VERY experienced melanoma oncologist (BTW you know you are in trouble when you have to designate “which of your oncologists” you are referring to in order to keep things straight!) if they had ever seen, or even heard of, a 42 year-old with simultaneous stage IV CRC and melanoma – the pause in their answering & the downtrodden look on their faces spoke volumes before each one answered: NEVER. Adding absurdity to the situation: I still literally have zero symptoms from either cancer.  None.

The main repercussions of having 2 simultaneous cancer diagnoses are: 1.) If the Melanoma has spread, I’d be fighting a “2-front war” without any real precedent or guidelines known in oncology.  2.) Even with just the current small malignant mole diagnosis & if a melanoma surgical cure is achieved – I‘ll now be excluded from a number of clinical trials, which lowers the shots on goal I have available to attack my CRC.  Mentally, this was a maddening unexpected twist to my exhaustive clinical trial research & planning over the past 5 months.  In fact the immunotherapy trial I was most excited about as a potential cure, now best case scenario, excludes me for 3 years.  For a Stage IV cancer patients, 3 years feels like an eternity to wait…

Within literally the same hour I received the melanoma diagnosis phone call (received on my cell phone while getting a CRC iv infusion BTW), I found out that a close person to me was experiencing her own serious medical emergency.  Although I am her designated medical advocate, sitting hooked up to an iv pole & suddenly now diagnosed with a second serious cancer, I was powerless to help her from 3000 miles away.  Thankfully she had an amazing social network to care for her since I couldn’t be there.

The amazing thing is how resilient human nature can be.  Amazingly I didn’t freak out.  You may find it hard to believe but I really didn’t.  YES – I was very surprised, very concerned & very busy juggling how to handle these events but I honestly didn’t freak out.  They say cancer battle-hardens you to handle almost anything that life can throw your way.  You know what, they’re right. (Although of course, I don’t want to continue to test the limits of this hypothesis!)

But now, the incredible GOOD news from the past week – and it truly was A LOT of good news (included are the medical updates you may be curious about)!

1.) Upon meeting with my melanoma oncologist, she actually down-staged my disease to “Stage Ia” which is better than the original diagnosis. She is actually a real melanoma expert (she developed the sentinel node biopsy protocol which is now standard of care everywhere) – so I trust her!  She told me I had a 97% chance of surgical cure – the best odds I have been given in a long time!  I continue to be incredibly impressed by the care I have received from every person I’ve been treated by at the UCSD Moores Cancer Center!

2.) Upon meeting with my CRC oncologist – after I joked that we were going to co-write a great case study paper on my weird diseaseS, he assured me that even though I may be precluded from many standard clinical trials – he will work to do whatever it takes to try to get me into key trials, up to & including (if needed) organizing “personalized” investigator-led trials with me as the only participant.  Once again, I am very blessed to be in his care & at Moores!

But it wasn’t just good medical news this week, a few big examples below…

1.) Veronica and I have dreamed of doing a major addition/remodel of our small 1,000 ft house literally for a decade, with many starts & stops along the way (we had just gotten a building permit issued in 2012 when I was surprise diagnosed – all construction plans were immediately canceled in the ensuing cancer emergency confusion)… On Friday we hired a contractor and the BIG construction project is a go to start in February!  I think having a BIG “positive non-cancer Family project” will be great for the entire family!  Even with cancer, oops I mean cancerS, life goes on!  Even though construction is normally considered a high stress project, it feels tremendously good spending time & energy on something that “normal people” do, completely unrelated to my health….

2.) I’m currently on a flight to Barcelona, Spain (thank you in-flight wifi!) to give an invited talk which is meant to bridge people from the pharmaceutical world with real world experiences of stage IV cancer patients.  I love giving this kind of talk (improved bridging is very much needed for both sides) – so I think this coming week will be an amazing experience.  As an added bonus, I’ll be able to meet a patient currently taking a lung cancer drug I helped discover – there is nothing more gratifying than that!  As a stage IV patient, she had been on the drug for 2 years now & doing very well!

3.) Finally, I found out yesterday that both the place I work as well as the discovery of that lung cancer drug survived the editing room floor and will be featured in the upcoming Ken Burns PBS miniseries documentary on Cancer “The Emperor of All Maladies”, based upon the excellent book of the same name.  Regardless of our participation in the miniseries, I think it will be a tremendously good documentary to watch and you’ll probably see some familiar faces in the movie… 🙂

So that has been the last week in my life.  I feel like I was being tossed about on the cosmic ocean weathering a storm but then as the storm died down, the sun began to stream back into my life.  That’s the thing with life – no matter how cloudy it feels, you know there is a bright sun right above the cloud layer, just temporarily hidden, that one way or another will always find its way back into your & your family’s lives.

2015-02-01_There is Always Sun Behind the Clouds

This is something I try to remember each & every day as the trials and tribulations invariably occur – that is life.  You can’t have the wonderful without the occasional bad, life doesn’t work that way.

Next up for me (February will be a very busy month…):

  • CRC CT scan on Feb 13. The scan data will determine which direction my CRC therapy will travel next…
  • Melanoma surgery on Feb 19. The expanded biopsy data will determine if I have to do anything more for my melanoma or if I appear surgically cured…

February will certainly be an even more exciting month than January!  (Which is saying a lot!) We’re currently packing up & coordinating our move to a rental house (avoiding the scan & surgery & multiple related doctor appointments)! Famous last words… what could go wrong? 🙂 Whatever does, I now have faith we can handle it.

To life (and all of its crazy twists & turns)!

Tom

5 Comments on “There is Always Sun Behind the Clouds

  1. Wow, Tom, you are the least boring person I know! That’s great news about the melanoma’s cure rate, and the Barcelona trip, and the miniseries. I’ll continue to keep you in prayer.

    Liked by 1 person

  2. Hi Tom,

    Good to hear the good news on the melanoma front. Not quite the same as your situation, but many years ago, my mother was diagnosed with non-Hodgkins lymphoma, and at the same time she was also diagnosed with localized melanoma on her shoulder. She was 63 at the time. Prior to her lymphoma diagnosis, she had been taking methotrexate for 4 years for rheumatoid arthritis–it is very possible that her cancer(s) were related to this immunosuppressive therapy.

    Good luck with the Barcelona talk! And of course with the CRC scan, etc.

    John

    Like

  3. Pingback: World in My Eyes (Favorite Posts of 2015) | AdventuresInLivingTerminallyOptimistic

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