Happy June 4th! (v5.0!)

Not with a bang but with a whimper… that is how my cancerversary – my fifth cancerversary – snuck up on me this year.

In previous years, I started thinking about it a few weeks in advance.  The feel of late spring in San Diego & the end of the school year may forever be seared into my psyche as the time of year when I heard those fateful words “Your husband has colon cancer, we need to schedule emergency surgery immediately”.

IMG_0298

Amelie & Dad – Five years ago this week

But this year was different.  This spring I have been squarely focused on multiple medical & advocacy projects in parallel – not as much time for my mind to wander and focus on nostalgic time-points.  I think it was on Thursday, when I was laying in the bed post-op from my Y90-SIRT procedure – after being admonished for using my phone which was messing up my blood pressure cuff – that it hit me: Sunday was my FIVE YEAR CANCERVERSARY.

“5-years” has a very special meaning in the cancer world, probably given too much weight, but a part of sociology and society is agreed upon milestones.  If you are lucky and show “no evidence of disease” after an initial diagnosis, for CRC and some other cancers – “5-years” is the time point where they say “if it hasn’t come back by now… you don’t have any more statistical chance of a fresh occurrence than any random person off the street”.  Rightly or wrongly, it is used as a surrogate for “you’re cured!”.  For the less fortunate that are currently incurable, it is psychologically hard not to compare yourself against the published stats of 3-, 4- , 5- etc year survival.  In metastatic CRC, once diagnosed, if not surgically curable, a patient has about a 10% chance of being alive at the 5-year mark.

It is into that grand & special 5-year club that I entered into this morning – as I have seen so many…. too many of my fellow patient friends succumb before reaching it. With all those losses, it really doesn’t feel like too grand of a club.  Although I assure you I am very thankful  to have been granted membership!

Why was I given 5+ years of Life and so many were not?  Was it some of the side therapies I researched and did in my earlier diagnosis days?  The intense exercise? The veganism?  The fact I had a genetically slow growing (albeit prone to growing resistant pretty quickly) disease up until this past winter? Divine intervention? Pure, dumb, blind luck?  I will never know… the necessary control groups do not exist to run the scientific experiment to deconvolute the key variables.

But at the end of the day, from my current viewpoint, how I got here is not important – it is that I did! I am living… I am breathing… I am thinking clearly… although still partially immobilized I can play and interact with my kids as a Dad… I can work on amazing advocacy & scientific projects… THOSE are the amazing thing that I am deeply thankful for!

I can clearly remember back – even the fogs of 5-years’ worth of chemobrain can’t steal this from me – the feeling 5-years ago today of “will I see the year 2013”?  Literally.  Will I see it? Will I see my older girl Amelie enter kindergarten?  Will I make it long enough for my younger girl Eleni (1 year old at the time) to have even a fragment of a memory of her Dad?  Those are intense & heavy thoughts that no young Dad should have to ponder – but five years ago, they were the very intense thoughts pounding in my mind…

But as they say the rest is history!  I didn’t blog the first couple of years, I used mass emails (remember those?) – for each of the annual milestones – and then continuing into the blog age for my 3rd cancerversary and 4th cancerversary – the continuous theme was: IT IS AMAZING HOW MANY WONDERFUL THINGS HAVE HAPPENED TO ME THE PAST YEAR NOT ONLY IN SPITE OF MY CURRENTLY INCURABLE CANCER BUT BECAUSE OF IT!

This took on different forms over the years but the amazing thing as you read through my yearly posts is how each year my Life truly did get better than the previous one on so many levels – without fail!  All while battling currently incurable Stage IV cancer! My 3rd cancerversary was written from Colon Camp and the start of my advocacy work.  My 4th cancerversary took that start and illustrated how it was being brought to unfathomable new levels with for example a newspaper column in the Philadelphia Inquirer newspaper  (!) and it illustrated my continued good health with a celebratory 10k run!

But the 5th year cancerversary today???

I am blown away by what has happened in the past 12 months!  The amazing part is that this time period brought me to previously unfelt negative depths of my disease… my disease took off on me… I was life threatened in February & to be honest, really not sure if I would make it short-term… I became essentially bed-ridden, wracked in pain from one set of tumors that had merged into a 6 cm mass – and my body was under daily life assault by an explosion of tumors in my liver, putting it under constant assault.  My quality of life plummeted which prompted very uncomfortable thought processes in my brain… My disease largely became FOLFIRI chemo resistant – and my overall health status too dire for me to enter clinical trials.  It was the ultimate oh-shit moment.

But… overlaid through all this was not only the most amazing advocacy projects I have ever done – indeed the most amazing advocacy projects I ever could imagine doing – with national media attention from NBC Nightly News, to the opposite end of the spectrum of Fox News, from an incredible one hour interview on The Charlie Rose Show which still blows me away, to multiple STAT News articles & finally most recently to a wonderful column on me in the San Diego Union Tribune.  Projects including both the COLONTOWN CLINIC  and a Patient viewpoint curated clinical trial finder with Fight Colorectal Cancer.  These projects not only I believe are transformative for CRC Stage IV patient empowerment, advocacy and literally health – but also, since they are cancer subtype agnostic,  I believe they have the potential to transform the overall field of cancer patient clinical trial advocacy, with necessary preliminary discussions to attempt this in progress!

Not one but two major hacks of the clinical trial system for patients. Mostly done while I was bedridden on high dose pain killers.  Mostly done when death was trying to knock on my door. It makes even me take stock, pause & say… wow.

If that isn’t any incredible year – not in spite of currently incurable cancer but because of it, I don’t know what is!

So it is with very mixed emotions I now hit the 5-year mark and enter my 6th-year of having metastatic colorectal cancer.  A mixture of: joy, satisfaction, relief, nervousness of what the future holds, excitement for the next round of experimental therapeutic ideas we have tentatively planned once my liver is medically stabilized with Y90-SIRT in August, excitement for the next – ever grander – advocacy ideas planned… Be ready for some plans announcements now that my back lymph node mass SBRT and liver Y90-SIRT medical procedures are done & I now hopefully just settle into biweekly FOLFIRI chemo for this year’s version of a Currently Incurable Summer

In that way… how did I approach waking up to my 5th-year cancerversary this morning?  A quick prayer of thanks and then immediately back to being busy doing “what I do”… write this quick stream of conscious blog entry and thinking/planning the next round of advocacy & medical projects… meant to help an every growing number of Stage IV patients out there in the world that desperately need help.

I can think of no better way to kick off my “Year 6” and I hope & pray that I am fortunate enough to give you an update on the amazing things accomplished 12 months from today, as the vibe of late spring in San Diego reminds me at that time “Hey, isn’t my cancerversary coming up sometime soon?” — as the 2012 memory of that initial feeling of helplessness and fright of potentially not even making it 6 months falls even further into the mists of time…

Carpe diem

I normally end with To Life!  But in honor of an AMAZING fellow Stage IV thriver Chere Angelic Garcia… I am going to end this 5th Cancerversary post with her favorite saying “Carpe Diem”!  Because that really is what Life is all about.  Don’t let diagnoses and prognoses prevent you from trying to do everything that you want to do, no matter what that is.  Maybe the stats say you probably won’t be here in 6 years… but instead of focusing on that, imagine all the incredible memories and things you can do with family, friends and otherwise if you are? What you accomplish may very well surprise you – in fact, I bet it will.

Carpe Diem!

-Tom

As an addendum, in the pre-blog years (previous to the blogs I linked above), I sent out Happy June 4th letters to friends and family – letters which I continue to gain strength and joy from reading.  Since many of this blog’s readership missed these letters the first time around, I have pasted the June 4th, 2013 and June 4th, 2014 letters below.  I hope you get as much out of reading them as I did writing them 🙂

From: Tom Marsilje
Sent: Wednesday, June 4, 2014 10:37 PM
Subject: Happy June 4th!

Hi Everyone,

Continuing our newest family Holiday started last year, I wanted to send out an update email as we celebrate my 2-year remission anniversary on June 4th!  Like last year, it coincides almost perfectly with the National Cancer Survivor’s Day held of June 1! http://www.ncsd.org/ ).  I only need three more remission anniversaries and then at the 5-year mark I’ll be “officially” considered cured! Woo-hoo!  In June 2012 I wasn’t even sure if I would live another year and by the grace of God, I awake grateful each day that I feel the healthiest I have ever felt my entire life – now a full 2 years later!  This update is a bit long but I haven’t really updated many of you for a year & it has been a busy year – culminating in yet another Happy June 4th! If you want to skip the details, feel free to skip to the end for the obligatory daughter celebration picture ha!

As some of you know, the past year since the last June 4th celebration has had its ups & downs, joys & worries, with the stresses of near constant testing & the detection last August of some enlarged lymph nodes suggesting “possible” cancer recurrence (or possible false alarm).  The news was completely unexpected since I felt so good – indeed, upon getting that phone call, I put on my running shoes and literally proceeded to run my first ever half-marathon that very same day!  Upon that news, I immediately pushed my healthy eating & heavy exercise I had already started after chemo into extreme overdrive – going full low-glycemic vegan under the guidance of an expert oncology nutritionist at UCSD, running 6 miles every other day & working with multiple naturopathic doctors in SD & LA aggressively researching & taking numerous supplements that have shown potential benefit in published animal or human scientific studies – indeed I have approached this aggressively as the biggest & most important “cancer research project” of my entire scientific career!  All of this has been a huge amount of work & effort (that I could have never done without Veronica’s help & support!) but I want to be able to say I have done everything I could think of to stay healthy & alive for my girls, there is no other goal more worth fighting for!

Although my oncologist (and I) still do not know if the enlarged nodes are cancer or simply oddly-behaving inflammation (no biopsy is possible), the most important thing is I feel great and “whatever they are” over the past 10 months, those lymph nodes have neither grown nor spread and some have actually shrank! Woo-hoo! After admittedly feeling panic last August, I am very grateful to have received that miracle!  Aside from the mystery of those lymph nodes, I am honestly in the best health of my entire life!  I feel incredibly positive that one way or another this story will have a very happy ending!

Since last June 4th we have had a year of incredibly good Family memories & milestones: Amelie entering Kindergarten, Eleni entering preschool, Amelie & my first “Father-Daughter School Dance”, Amelie’s 6th birthday, Eleni’s 3rd Birthday at Disney Land, teaching Amelie how to ride a bike without training wheels like I remember my Dad teaching me, multiple family trips including ziplining, dune buggies, kayaking, hay rides, beach fun, etc etc etc, me being able to take part in many school class parties & fieldtrip, Father-Daughter backyard campouts, joining in Amelie’s excitement to fight the “real” Darth Vader with a light saber, Eleni & Amelie first roller coaster rides, extremely fun Halloween/Thanksgiving/Christmas/New Year’s/Easter and even more additional Holiday & weekend fun with many family & close friends than I can even begin to fully list!  Regardless of background cancer stress etc, we had the blessing of having an incredibly fun family year!  Being able to have & be a part of those fun childhood memories & milestones is something that will never be taken granted for again!

It is often written that cancer can drive a family apart or draw them abnormally close, and we have definitely been in the later group!  Cancer has impacted our family in so many ways but I can honestly say this does include in many positive ways – we do not take our lives together for granted, our closeness & support for one another is stronger than ever and I am so thankful to have experienced that blessing!

Thank you again for all of your support, help & prayers over the past 2 years, I couldn’t have done it without the incredible support from you, my Faith & Church and as already mentioned my entire family!

Pasted below are us celebrating our second annual June 4th celebration.  I also pasted it alongside previous photos from 2012 & 2013 (I have to admit we weren’t really in a celebration mode on June 4th 2012 ha) so you can see how fast the girls are growing up!  🙂 To repeat how I ended last year’s June 4th celebration email: Some people look at their diagnosis anniversary with sadness, I prefer to make it a Family Holiday celebrating life.  We’re hoping it is an annual Holiday which will continue on for many more years!

Happy June 4th!

Tom

From: Tom Marsilje
Sent: Tuesday, June 04, 2013 9:58 PM
Subject: Happy June 4th!

Hi Everyone,

Just a quick update since many of you have been asking this spring how I am doing.  On June 4 my prayers have been answered & I celebrated the 1-year anniversary in my cancer remission! (Ironically almost perfectly timed for the National Cancer Survivor’s Day held of June 2! http://www.ncsd.org/ ).  I only need four more of these anniversaries and then at the 5-year mark I’ll be “officially” cured! Woo-hoo!

Overall I am feeling great!  I am eating better & exercising more than I have since high school.  I’m also making sure to get a lot of sleep (keep that immune system happy!) and spending as much quality time with the kids as I possibly can to make the most of life.  Cancer really does irreversibly change your life perspectives…  Being a Cancer Survivor is a bit of a full-time job  between very frequent monitoring tests (a bit nerve-wracking since it feels a bit like playing Russian roulette once a month) + trying to increase my survival odds in any way possible I can think of (careful diet, daily exercise, many herbal/nutritional supplements, acupuncture, etc).

Thanks again for all of your support, help & prayers over the past 12 months, I couldn’t have done it without both your and my family’s incredible support!  In some ways I can’t believe an entire year has gone by since my complete surprise diagnosis last June 4…..… while on the other hand, I find it hard to remember clearly what life was like pre-diagnosis (doesn’t help that I have partial amnesia from chemo-brain last year! ha).

The entire family is doing great!  Amelie & Eleni are growing up fast – pasted below are us celebrating the “newest annual Family Holiday” (Amelie picked out my crown).  Some people look at their diagnosis anniversary with sadness, I prefer to make it a Family Holiday celebrating life.  We’re hoping it is an annual Holiday which will continue on for many more years!

Happy June 4th!

Tom

 

12 Comments on “Happy June 4th! (v5.0!)

  1. In awe, as usual. Although I am a Stage III rectal cancer survivor, I concur and feel so much of the existential qualities of the cancer experience.
    Per the five year mark; one if me doctor’s, Raymond Chang, said that ten years post diagnosis would be a marker. Have you heard of his work? Many of the therapies and ideas recently touted, were used by Chang over 15 years ago. I am fortunate my oncologist recommended that I work with him. Dr Chang is also compassionate.
    And the sense of wondering if….I used to wonder all the time. Meditation and the focus when practicing qigong helped and still does.
    Well, as the indefatigable Suzanne Kinsley once told me, when discussing how to deal with others subconscious schadenfreude, everyone is terminal.
    Continued thanks and continued celebration.
    L’chaim!

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  2. Thank you so much for what you’ve given me with all your work and passion. We are a strong and fragile group. You keep the flame! Always, sending you healthy longevity!

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  3. I just had my one year cancerversary of stage iv metestatic colorectal cancer. At this point I feel that because of my diagnosis and limiting health insurance, many doors are closed to me. With many mets in liver and lungs no docs available to me will consider surgery, SIRT, or many other options. Tom you are very fortunate to have the resources you do and I salute you! Live Long

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    • I agree Lois… I wake up thankful every day of the health insurance and resources that I have & I wish that all patients could have the same… Please take care, Tom

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  4. Hi Tom, I enjoy reading your thoughts and am glad that you have had 6 years with some pretty amazing experiences. Tomorrow is my first cancerversary. I have done a fair bit of reflecting through this year (when I had the brain power) and I too, have had many neat experineces that have helped me to grow and develop into a more understanding and patient person. I still have another surgery to go before I reach the “NED” status but I am looking forward to many more years of growing and developing realtionships with others. 🙂
    Beth

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  5. The “Stage IV incurable” somedays has me in tears especially when something I “use to do” is no longer part of my reality. My cancer is extremely rare, SDHB Deficient GIST and I inherited the cancer from my father who died at age 45. This is the second time around for me hearing “no cures” . . . But because I’ve been aggressive about having surgery for my tumors when the reach a certain size (5 cm is my max) then I get surgery. I’ve also opposed all the “chemos” they say “might” work especially when I see my fellow patients suffering terrible side effects. I just made it to my 9th year “anniversary” having had 4 major surgeries in those years. I started my own website to explain the complication of this cancer and have also been active in advocating and then getting patients to expert doctors. One who helped me with my website: http://www.SDHcancer.org is at UCSD there in San Diego (actually where I went to college and my brother still works) . . . I had to accept I will always have tumors and surgery could be after any CT scan . . . It is an emotional battle for me as well as symptoms because I already watched my father die of this disease as a child. My healing journey as a teenager was to walk the beaches in Del Mar . . . I wish I was there today, barefoot in the sand, letting the waves wash over my feet . . .

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  6. Congrats Tom! Your blog is so valuable and inspiring.What supplements were/are you using Tom?

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  7. Tom,
    Your 5 year cancerversary is significant and quite an accomplishment! Congratulations! Your reflections on your feelings when initially diagnosed ring so true. The way we think about life, our loved ones and time changes so dramatically. My relationship with my husband is richer, closer and dare I say ‘better’ than before I was diagnosed. Good has come out of a stage 4 CRC diagnosis. With my MSI high status, I have been blessed with a great response to my Keytruda infusions. My husband and I laugh a lot and are traveling in between infusions. I had my 1 year cancerversary on April 30 and I am so grateful for it!! And I’m grateful for your generous spirit, Tom, and look forward to your encouraging words for many years to come!!
    To Life!
    Diana

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  8. Tom, thank you for the journey back to the beginning and forward. Your spirit always inspires me to hope and believe that a cure will soon be found. Your life has so much purpose and meaning to the world of cancer survivors still living and even those that have left us too soon. I thank God everyday that I am connected to brave friends like you and Kenny and Nathan. Even though we have lost those amazing 2 guys … they will always live on in your work and our hearts.
    I can’t wait to see how your new plans continue to show progress of remission and quality of life.

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  9. Hey Tom – on the 28th Feb in the comment section of your’ in case of emergency break glass’ post I actually mentioned SIRT and I really hope you saw that as I would love to think I helped you just one bit as you have helped me and my wife so much.

    Sirtex is a listed company and often gives updates on the performance of the sphere technology etc. I really hope it helps you And gets you back on track.

    Thank you so much for everything you do. You are truely inspirational.

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