Not the Most Fun Rollercoaster… but I’ll Take It!

What a week I had last week!  Taken overall it was a GREAT week.  It was extremely hectic and not without some blemishes towards the end, but overall… it was a great week.  The type of week that doesn’t happen often enough in the lives of advanced stage, Stage IV cancer patients (and associates caregivers and families) once the disease enters into late stage.

What made it so great?  While I had mentioned before that we are essentially fighting a 2-front war right now. 1.) The near-term life-threatening explosion of aggressive disease in my liver and 2.) The intense (debilitating/handicapping) pain caused by (we believe) a 6 cm lymph node mass in my back.  The liver issue will literally kill me and the back issue is starting to make my life here on Earth somewhat questionable in terms of living – housebound, largely confined to bed, unable to be much of a Father to my kids, constant pain… In each of their own ways, BOTH issues are equally important in my eyes in terms of prioritization! I want to live fervently but I also want to be able to enjoy the basics of life too with my family!  I feel that both are essential to “LIFE”.  Tumors elsewhere in my body (e.g. my lungs are neither near-term life threatening nor causing symptoms right now – so they have been triaged to the sidelines.

War Front One – The large lymph node mass causing my back pain
I tolerated well & fully finished the SBRT focused radiation on my 6cm lymph node mass we think is causing my pain – I hope to see a reduction of pain in the near future as necrotic (dead) tissue is cleared… Although we are still in potential psychosomatic/placebo effect land… I cautiously think it is starting to feel better! 🙂

War Front Two – The near-term life-threatening aggressive liver tumors

The liver “Selective Internal Radiation Therapy (Y90-SIRT) dress rehearsal/mapping procedure went very well and was a complete success!  All systems are a go for a Y90-SIRT procedure to my right liver lobe on June 1st!  It was an interesting procedure to say the least.  They entered my arterial system via artery in my right groin.  I was awake (but sedated) for the entire procedure so I could see what they were doing on big TV screens.  I dutifully followed instructions to move how they wanted me to move during the procedure (why I needed to be awake) and the 2-3 hour procedure flew by like a dream.  I was in post-op for 4 hours and as soon as I was discharged I quickly left that hospital and went up to the Cancer Center to have my final dose of radioactivity to my back (War Front 1) – a very hectic day indeed!!

 

While all of that was happening on the medical front, my advocacy continued…

My curated MSS-CRC clinical trial app’s release went incredibly smoothly via the big efforts of my collaborator extraordinaire Maia, Fight Colorectal Cancer and Flatiron Health! There is some tweaking going on behind the scenes of things that didn’t arise during beta-testing but overall the rollout went very smoothly! I hope as patients and caregivers give it a try that it is very useful to them!   A huge thing that means a lot to me is that a non-CRC advocacy group contacted me yesterday about potentially using the methodology to serve their own patient population – which is really my big picture goal… to help as many Stage IV patients as possible no matter what their “ribbon color” is! I know this is the feelings of many other Stage IV activists I have come to know this past year! There is nothing “CRC-specific” to the curation methodology I used, I believe it can be tweaked to serve many different types of cancer.

On the personal front…

We had a pre-summer pool party on Saturday where the girls and their close friends had a blast!  Because of my SIRT surgical sutures I couldn’t #CannonballLife my way into the pool this time but I had fun throwing diving rings into the pool for Eleni! Life and being a Dad continue on!

2017-05_Dad+Eleni_SIRT Pool Party

So taken all together, being realistic, I couldn’t have asked for a better week!

Homer Simpson Woo-Hoo

But then on Saturday Evening, reality had to reveal it’s truly ugly head…

I became nauseous and by overnight it escalated to vomiting.  And I know my body very well.  I knew exactly what this nausea was from.  It was symptoms of my liver disease, starting to reappear only 12 days since my last biweekly chemo infusion.  This was hard for me to witness, on both mental and emotional levels.  It means that I truly am travelling my entire life right now on a knife’s edge, threading the needle.

Theading the Needle

copyright Bill Frymire Oct 2003

I can not miss a single infusion of continuous chemo, not even a single week’s pause, without significant disease symptoms appearing.  That is an incredible burden.  But it very much strengthen my resolve in getting the Y90-SIRT procedure done as quickly as possible (June 1 for the right lobe) and using continuous chemo, keep the left lobe under control to make it to a second left-lobe Y90-SIRT procedure in August.  I hope and pray that both SIRT procedures (Explained more fully here) will “reset the clock” enough in the liver to allow me to reenter the world of experimental immunotherapies and get in one or two Hail Mary immunotherapy shots on goal.  That is my fervent hope and prayer right now…

The rollercoaster

So… what a week between all of the positive liver Y-90 SIRT mapping, back pain SBRT radiation & advocacy news – capped off with the negative return to disease symptoms of nausea and vomiting at the end, making it feel like a true roller coaster.

Not the most fun type of rollercoaster but I’ll take it because a “rollercoaster” implies gaining new highs and not just new lows!

But I think the first half of the week outweighs the disease return end of the week because it pushed plans forward (and I really like it when plans get pushed forward!) – so overall, “being realistic”, I couldn’t have asked for a better week… 🙂 — and I hope for many, many more like it!

To Life!

-Tom

15 Comments on “Not the Most Fun Rollercoaster… but I’ll Take It!

  1. We are riding that crazy roller coaster with you Tom, and feel lucky to have your help and inspiration. Hang in there – the Y90 nuclear bomb is about to destroy those pesky liver tumors! Hoping for pain reduction soon.

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  2. I am moved by your tenacity, and positive attitude. I wish for your pain to ease and for the rollercoaster ride to continue!!

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  3. Tom, your tenacity is truly inspiring. I’m looking forward to June 1, and I fully expect you’ll have your experimental immunotherapy shot-on-goal soon after that.

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  4. What a week you had! And yet you achieved more during the week than some do in a lifetime. You share your tremendously brave, innovative journey with us. Your example gives us the hope and information to fight again–stronger, better, and with optimism. Sending lots of Alabama prayers and positive vibes westward to you! Here’s to a hero…thank you.

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  5. Tom,
    I won’t dare to try and contemplate what this rollercoaster is like for you. My reality was, is, so different than yours or others. I will say this: Pain is pain; it’s just the same in whatever form it arrives in for each of us.

    Your continued commitment to your life, family first, is as I see it, as the foremost important impact in your mind and soul. All while putting and placing yourself in medical procedural pain and enduring what most of us couldn’t think of or fathom. (I for one, would have to dig deep and see where my strength would be coming from to make decisions that you have had to make.)

    With this said, knowing my own true heart and soul, reading your blog, posts, if I were asked today: If you could trade places with any one soul on earth, no matter what the reason or cause or outcome, I would say you, without hesitation. I say this out of pure maturity and clarity of mind. Why? Then YOU would always be focused, without ‘physical’, and keep striving for the rest of us as you are so diligently doing now. All while doing this painfully and trying to stay focused on the big picture, the hill to climb to reach the top, for us all.

    I’d gladly take that downward fall, if it meant you, and pray you will, succeed to the top.

    To Life! As always, my friend,
    Jim

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  6. And in the middle of all this you helped me search your trials tool! You are a remarkable and wonderful man! Much love and luck to you!

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  7. You remain n inspiration. I am only 18 months into my fight and 7 months after a living terminally or as I call it living currently incurable. I pray I have your strength and determination in the days ahead. Thank you for sharing. It is a roadmap for the future and while my journey will be different, the faith, perseverance and just living life to the fullest will be similar

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  8. Tom, praying for you always. Looking forward to your post-June 1st post!
    To life!

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  9. really really hope you get into a slamming immunotherapy trial right after the SIRT!!!! god knows you deserve the chance at whatever is best out there. reading your latest posts it feels like you went from an exhausting marathon race to a frantic 100m dash in a heart beat, so go get that jet pack for the future…stay strong dude!

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  10. Tom, I had fantastic results from SIRT, coupled with FOLFIRI. I won’t lie – it knocked me about fairly brutally and I did develop radiation induced hepatitis but it knocked my tumours on the head and gave me fantastic disease control for the six months I was off chemo due to surgery and associated complications. One thing to be aware of – I had excruciating pain in my leg and hip for about a week post procedure – turned out it had aggravated my femoral nerve. Lyrica helped with this. I am hoping and praying for a good outcome for you from this. June 1 is a big day for me too – I’m having my Pulmonary Vein Embolisation ahead of a liver resection in early July – am at this point thanks in part to SIRT

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  11. Hi Tom, thanks for keeping us posted on the ups and downs. I love the picture of you getting in the groove at Eleni’s party. Sending you positive vibes and healing thoughts. Allison

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  12. Pingback: Attack on the Liver War Front: Round One! | AdventuresInLivingTerminallyOptimistic

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