So This is What Cancer Feels Like

An incredibly intense series of events have been happening to me medically over the past month – life changing events for both me and my family.  Things were happening so quickly, I haven’t been able to provide updates here – but today I’ll change that.  Today, you will hear what has been going on.   It was a rough month – for both me and my entire family – but I am honestly excited about the avenues it has opened up…

So This is What Cancer Feels Like

You would think being diagnosed with cancer way back in June 2012 I would have known what cancer feels like.  But I didn’t.

The pain had started out quietly enough – sneaking into my life.  The first real hint of it occurred in August when it struck my lower back upon flying back home from LIVING my Intentional Summer of No Regrets.  Due to flight delays etc., that flight back had been a beast of a trip – 36 hours of unintended layovers and no sleep.  I came back home from it with some back pain (who wouldn’t?!) and it took a few days to subside. Then I forgot about it.

A similar trip to the east coast in early October set off a similar bout of back pain.  In a 48 hour period, it was “Planes, Trains, & Automobiles” time as I traveled from New York City to Boston to San Diego to Santa Barbara.  Upon my arrival in Santa Barbara, I once again had back pain (who wouldn’t?!) but this time the pain did not subside…

It was minor enough that Life went on… but it slowly grew in intensity over the course of the fall and it never went away.  Relentless.  Constant.  It became fully integrated into my Life.  My new Life Partner.

I talked to my doctors about it.  It was determined to likely be due to some metastatic lymph node tumors pressing into a large muscle in my back.  Every time that muscle moved, shards of pain occurred. Over the course of a day, your back moves a lot.  Since the back is always making small movements, a background ache was always present and constant. These are the same lymph node mets that were showing resistance to FOLFIRI chemotherapy – so no help there.

By November, I was forced to begin taking opiate pain medications and as you may imagine, these have side effects – my Life began to be impacted in new ways – but my fall continued.  Life has a tendency to go on – mine did too – just with a slowly increasing new member accompanying me every step of the way – pain.

Then we went to Cape Cod for Christmas.

By this time, the pain had crescendoed into a force which was impacting my daily life.  It was being held in check by pain relievers (with their side effects) – but it was a fifth member of the family.  For the first time I was getting first hand glimpses of a side of cancer I knew existed but I had been lucky to avoid for over 4 years… pain & pain management.

I took along my pain medications but even with them (and also because of them) – Christmas was not going to be a traditional Christmas in terms of me.  I had hoped to shelter the kids as much as possible but those limits were quickly overcome.  The pain meds made me very sleepy so I was in bed quite a bit – I made sure I was present for key Holiday moments but aside from that, I became a cancer recluse.  My energy levels were drained – which even prevented me from doing many of the things I absolutely love doing, from hiking to long form writing. Personal updates and long form writing here on this blog rolled to a stop.

But then something worse happened – the pain started to take off.  And I was 3,000 miles away from my oncologist…  Calling back to San Diego, we began to increase the dosage of my pain meds every day or two – but it was a game of catch-up.  Pain relief for a day or 2 but then another dose increase was required.

I began to run out of pills. Under Massachusetts law I could not get more unless seen by a local physician.  I was an hour away from the closest community hospital.  3 hours from the closest Cancer Center.  I would be a completely healthy looking 44 year old, with no local medical records, on a Holiday weekend – asking for high dose narcotics.  This was not a plan set up for likely success.

So a backup plan was quickly formulated.  I pulled things together and had a wonderful Christmas Day with my daughters and family… and then… I was forced to leave the family vacation early. Leaving them & my wife with the Grandparents for post-Christmas fun while I flew back to San Diego alone – to address the pain that had just taken over my life – both via the obtainment of new pain meds upon arrival in San Diego and quickly placed doctor appointments to address the cause of the pain.  I had been planning on doing all of this post-vacation – but the speed at which the pain unexpectedly took off while on Cape Cod was not foreseen, and it forced my hand to accelerate my response…

2016-12_dad-amelie-eleni_christmas-on-cape-cod

Leaving the family to fly back home was one of the toughest things I have ever done.  As I have written about in 2015 (my very first blog post!) and in 2016 – our annual family ski outings are an incredible part of my Father-Daughter relationship with Amelie.  Skiing in western Massachusetts was the post-Christmas week plan.

This year Amelie did it without me.  All because of cancer. So this is what cancer feels like.

Return to San Diego

Home Alone” is a favorite holiday movie in our house.  My version was not as funny.  I spent that next week alone.  Alone with my pain meds and frantic attempts to try to start to address their cause. The week in-between Christmas and New Year’s is not a week made for getting a lot of things done – major healthcare changes included. I would be wide enough awake in the morning to make brief forays from the house but aside from that, I would alternate between the couch & the bed largely in a pain med stupor.  Thankfully I have such a large online support network, they kept me company.  At age 44, basically without warning, I had become a shut-in.  So this is what cancer feels like.  The highlights of the week were talking to my daughters on the phone about their holiday adventures that they were so excited to tell me about.  Their young lives continued.  I was so glad to hear those stories on so many levels…

A Light at the End of the Tunnel Appears

With the help of a close friend, I went to a radiation oncologist appointment late on the afternoon on the Friday before New Year’s Eve. I was so thankful to get this last second appointment.  Plans were made to start me on radiotherapy ASAP to attack the cause of the pain instead of just masking it was pain meds.  Even though I was nervous about radiation therapy (I have never done it before) I was so excited to have plans in place to start to address the cause of the pain!

I also met for the first time with the palliative care pain specialist team at UCSD – in my case, led by the incredible Arlene Cramer.  The team was amazing! They quickly and intently listened to my concerns (pain control but done in ways that did not cause all of the sedating side effects of my current pain management) and they came up with a detailed plan to address my issues & concerns.

Between the radiation oncologist and the palliative care team I was thrilled.  It is amazing how much spirits can be lifted by the simple existence of a plan.  Before that plan was in place, I have to admit, I was approaching the emotional and mental lows I had not experienced since my initial diagnoses.  My eternal terminal optimism was being severely tested. But lifelines of two types were thrown at me at once – when I needed them most!

DRAFT_Time to Fry Some Bad Guys_Ghostbusters Gif

Getting Zapped

I began radiation therapy on January 4.  It was much tougher than I ever imagined.  Much tougher than any chemo I have ever done.  I felt poisoned.  Fatigued. Vomiting and diarrhea – not just my GI but my entire abdomen/lower torso was a mess.  I felt like the insides of my abdomen were on fire – fully inflamed.  Because of the range of lymph node tumors & their locations that they wanted to target for shrinkage – a relatively large field of radiation attacking my abdomen was the plan.  This is good from an efficacy/pain relief point of view.  Not so good from a toxicity/side effect point of view.

I hate to admit defeat but I couldn’t tolerate the initial plan. The toxicity was too much.  Even with lowered doses. So, we had to introduce “break days” and also a newer, more targeted technology “IMRT” to help with increasing the tolerability (this had always been planned but delayed… waiting for insurance approval). But this added to the treatment time.  And……….. looking over my shoulder was my upcoming Immunotherapy Clinical Trial – as I wrote last Fall – when you get that call from a Clinical Trial with a slot opening, you have to jump immediately and take it.  I had been given indications they would be calling soon.  All of our radiation therapy had to be planned so that there is a 28-day treatment free period before the Clinical Trial.  I was cutting it very close.

Frantic email correspondences with the Clinical Trial team confirmed that we were still safe in terms of timing.  I teared up when I received that email confirmation.  I thanked the Clinical Trial team profusely.

Where Things Stand Right Now…

I have 5 more radiation “zaps” to go!  With all of the changes we have made, I believe it is tolerable and I can finish it.  Hopefully this helps address the cause of my pain – and allow me to significantly reduce the amount of pain meds I am on. The switch over to new pain meds is already helping with my sleepiness, so I am cautiously optimistic that my life will be restored to something more “normal” once the radiation is complete.

The remaining radiation itself however is tough – so we (I have to include the entire family on this – it has been tough for all of us to endure) have another 10 days or so to slog through… but the end is in sight.

The Impending Clinical Trial

Even though I am cutting the radiation very close to the “no-more-treatment line”, we are safe.  Barely.  Once the radiation is done, I will immediately enter into a 28-day “no treatment” period preparing for the start of the trial.

An amazing aspect of all the series of unfortunate events that I have described in today’s post? Radiotherapy actually kills cancer cells in an “immunogenic way”.  Having radiotherapy, immediately preceding an oncolytic virus/PD1 inhibitor clinical trial (NCT02636036) could in theory turn out to be very providential! The radiotherapy may end up helping to set the stage for the impending immunotherapy blast.  I certainly did not plan it that way (no, I did not plan my pain ha!) but I am scientifically thrilled at how this has unintentionally lined up as another treatment on my “taxiway” of therapeutic plans to attack on my cancer!.

Radiotherapy… Oncolytic Virus… PD1 inhibitor… I love it when an immunotherapy plan comes together 🙂

i-love-it-when-a-plan-comes-together

Even when that plan was brought to me by a series of unfortunate events rather than purely rational planning… 

How scientifically interesting is this lineup?  A clinical trial (NCT03007407) was just announced to test this very concept (immunotherapy following radiotherapy in MSS-CRC patients) – to test something I just ran into by accident!  The entire goal of my current “1st step” therapeutic planning right now is to try to convert my “immunologically cold” MSS-CRC tumors into “immunologically HOT tumors” prior to hitting them with a PD1 inhibitor – and if needed, subsequent immunotherapies.

The sequential combination of radiation + oncolytic virus will be turning up the heat… I can’t wait to throw my tumors into the fire – and the first step has been running now for the past 10 days!!

So after a long delay without any personal medical updates – that is where things stand.

There have been huge impacts on my and my family’s lives the past month.  We all now know much more what cancer feels like. But… there is a huge light at the end of the tunnel.  I think my pain is improving.  And I think the Universe has lined me up for my first “home run swing” in the impending clinical trial.  After the depression and heartache of this time period – seeing that… knowing that… is an incredible feeling to have.

My terminal optimism was severely tested the past month and I am so sorry for what my family has had to witness and go through… but I do feel that what doesn’t kill you makes you stronger. I sure as hell wasn’t killed by the past month’s challenges. My pain is decreased & my energy levels are up and I am no longer housebound. I feel very strong entering into the next phase of my cancer path: taking that first Clinical Trial home run swing. 

My terminal optimism survived the most recent test.  I know there will be more tests – probably with increasing magnitude and frequency as my cancer advances into later stages. 

So this is what cancer feels like:  Finding ways to survive the tough times and retaining Hope that one way or another – a path forward will be found to bring improved health, peace & comfort to both you and your Family.

To Life!

-Tom

Pushing New Doors Open

25 Comments on “So This is What Cancer Feels Like

    • You are the example others should live by…I trust your pain has become manageable, your journey with this disease short, and your health to become stable and long. Best regards for a long life

      Liked by 1 person

  1. Prayers for successful advancement in your clinical trial and hope that the pain doesn’t return!

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  2. We can endure MUCH when we know our suffering serves a PURPOSE. So glad your team was able to adjust your treatment, and I’m very hopeful that the next five treatments fly by. ❤

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  3. Tom, always in our thoughts. The palliative care team also saved our family and continues to be a key source of support. You are not alone. You are still in the race. To life!

    Hayley & Jim

    Like

  4. I am happy to read that your radiotherapy has a bonus! Wonderful news for 2017! You are an inspiration to me and I am so grateful for your sharing!
    I am a stage 4 CRC patient, MSI high, currently on Pembro (off label) at UCSF. I am lucky to have a wonderful team of doctors including a palliative care specialist. To Life!!

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  5. Tom, I am so hopeful reading this upate and plan for ongoing treatment.
    It’s a very dark place that you have been to with the pain of cancer. Coming out of it brings new insights as you have said.
    To life my friend #TOLIFE

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  6. It was good to hear your update. I’ve come to realize that prolonged silence from you means that you’re in a “bit of a bind”. My continued best wishes as you wait for this trial to start. Sounds like perfect timing – you are like a magician who always pulls another rabbit out of the hat.

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  7. Tom, thank you for the update. Jim too has been going rudderless for the past month while his pain and cancer spreads/grows. His doctor left our Oncology center after nearly 4 years of being his doctor. He was put on Lonsurf which was where he went downhill and fast. During the second treatment of this drug, I took him off of it and called Oncology for an emergency meeting with a “temporary” doctor. He was the doctor who put the safety net under what felt like a free-fall. Jim is now having his biopsy tissue (that is the leftover tissue from the liver biopsy they did last month) sent to NCI-MATCH. We’re praying something shows up so he too can get on a clinical trial that attacks his cancer. I thank you so much for helping me understand the pain both mentally and physically that one goes through at this stage of their cancer. My prayers are with you and that the path forward is truly one of healing and peace for you and everyone touched by you. Hit that Home Run out of the Ballpark!

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  8. Tom, words are insufficient to express the gratitude we all have for your contribution (so over and above). Love your writing also and so sorry you’ve been going through such pain. I am rooting for your big swing to be a home run.

    Sending ❤️ and continued hope to you and your family,

    Maureen

    Like

  9. Hi Tom, thank you for the update. I was wondering why I hadn’t read any updates recently. I’m so happy to hear that you have a plan and will be able to make it to the clinical trial in time.
    Sending you good vibes and thoughts for the immediate future and the rest of 2017.
    Christine

    Like

  10. Tom,
    Once again I have to express my admiration for all you endure and share. I am so glad you may not only have pain relief soon but also get a “boost” from the immunogenic actions of the radiation therapy, which I have heard and read about. Just having followed your blogs, I know how devastating and incapacitating this bout must be. Having a totally new level and constancy of my own pain, either from the metastatic disease in my bones or nerve compression or both, I totally empathize. It has changed me completely to be in pain always, and trying to negotiate meds and their various side effects. There has been no concensus on what to radiate if anything for pain control, so I am attempting to get more a more specialized opinion before I act. Constant pain is a complete game changer and you have described your experience so well and so generously share this for the benefit of cancer patients and caregivers as well.
    Linda

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    • Tom,
      Your optimism is a blessing: there is a path. Pain makes everything dismal, but once it’s treated, you can see more clearly. Your body knows just what it needs to do, and the immune system is amazing. Immunotherapy recruits the strength you already have, and you have exceptional fortitude.
      Best to you and all who surround you!

      Like

  11. Tom, your dedication to educating and advocating for the CC community is incredibly admirable. To go through so many ups and downs, mental and physical, and still care enough to take the time to update us in such a way is beautiful brother. You are like a super-hero for the community. I will continue thinking of and praying for you. I can only imagine how tough it will be waiting these next 30 days or so to begin the trial protocol!

    Like

  12. You are an inspiration to all of us who are dealing with cancer and navigating healthcare! Your updates help me to figure out next steps I need to take. Thank you!

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  13. one of the signs at the university of florida/shands infusion center says,
    “you don’t know how strong you are until you have to be strong!”

    Like

  14. Thank you so much for sharing your feelings during this difficult time that you have been through. I have learned much because of you and your journey. I hope your radiation will help with the immunotherapy trial you are about to undergo. It is pretty amazing how that all came about. Here’s to you, Tom! May you live a long life so that you can continue to help others navigate this thing called CANCER!

    Like

  15. Good luck and God bless! There is nothing so mentally draining as chronic pain. So glad you will finally get some relief. Aside from the treatment/surgery issues, I have been remarkably painfree the last two years. I, too though am starting to get the lower back issues ( very intense and fleeting pain). I think the worst aspect of cancer is how it just slowly wears you out. I try to occasionally lock it in a box and give myself a vacation to regain my mental strength! Sometimes I have to fight to get it in that box and sit on the cover, but it is so rewarding! Here is to hoping your next family outing is more comfortable!

    Like

  16. Thank you for the update. Prayers that your pain is relieved with the radiation and that it will help you in the upcoming clinical trial. i appreciate you sharing for the benefit of all of us. Many thanks and wishing you and your family many more Christmas vacations together in health.

    Like

  17. Tom,
    Andy & I are praying for relief and smooth treatment. Best of luck to you with the upcoming trial!

    Like

  18. Tom, You inspire, delight and amaze in equal measure. Thank you for sharing the intimate details of your journey. I wish light, peace and comfort – to you and your family in the testing times ahead,

    Like

  19. Pingback: Whistle While You Work | AdventuresInLivingTerminallyOptimistic

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