A Very Public Thank You to My Workplace

When you are first diagnosed with cancer, many things stream through your mind at light speed.  Being there for your kids, impending major changes to lifestyle and life plans, and right up there in that top tier of thoughts are worries about your employment and workplace. Before I drill down to my specifics, these are HUGE concerns impacting Stage IV patients overall, adding yet additional layers of stress on top of their recent diagnosis!

Would I be able to keep doing my employment during treatments or disease symptoms?  How will I be treated as the only Stage IV patient at my site?  Would I be able to keep working in a field that I love (healthcare science, helping patients) – not only for professional satisfaction but also for all of the employment benefits attached to it (good health insurance etc.)?

All of these concerns swirled together – a mixture of the intensely personal and the financially pragmatic. They were not idle concerns – my health and survival timelines are directly connected to my ability to have good health insurance. My psychological well-being is also directly connected to me being able to continue to use science to help patients, to have a sense of purpose in the healthcare field.

I was 40 years old, approaching the prime years of my career as a project I was on was beginning to show clear significant efficacy in clinical trials.  I had achieved a kind of career I had dreamt of since high school: using science to significantly help patients, in particular cancer patients.

I dutifully donated to my 401k retirement plan.  The possibility of something so extreme as cancer, potentially impacting or stopping all of those well laid and normal upper middle class plans for my later retirement life, was the furthest thing from my mind.

Until June 4, 2012 when everything changes in the blink of an eye.

One of my first concerns immediately upon diagnosis was that as the sole family wage & benefit earner. I now had the ultimate in pre-existing conditions.  Would my health insurance be gone forever if I lost my current policy? Yeah… when you fill out new health insurance paperwork and check off the “terminal stage IV cancer” box, they used to have a very special place for those applications: their circular file.

2016-10_no-trash-can

I was lying in bed in that June of 2012, recovering from colon resection surgery when the US Supreme Court ruled that Obamacare could proceed. Politics aside, I hope you can imagine what this particular clause means to someone with a preexisting condition, at the absolute gut level.  I literally started crying hard in bed with relief as the news that a pre-existing condition clause was officially a thing the past was broadcast from the steps of the Supreme Court.

Worst Case Scenario Worries Unfounded

Even though I think I had to mentally go through worst case scenario possibilities (Hope for the best but plan for the worst), my employer was (and still is) incredibly awesome and supportive!

gnf-logo

For over four years now, my local site GNF has been a family environment, surrounding me with support whenever I have needed it to work around treatment schedules and side effects with e.g. change in job requirements/roles.  This support has come from the very top of the organization all the way down through the levels of co-workers who have been tremendous in adjusting to a Stage IV patient in their midst– it has been simply amazing to behold.  Groups of these same co-workers have undertaken massive translation projects to translate (in their free time) this personal blog for Chinese and Russian readers.  I assure you, publishing a free-wheeling American blog in mainland China is no easy task!

nibr-logo novartis-logo

Our parent organizations NIBR (the research arm of Novartis) and Novartis (the major pharmaceutical company) had likewise not hesitated to fully support me, from the individual scientist level to top management levels, whenever it was needed – from facilitating meetings with internal oncology/immuno-oncology experts, to showcasing my advocacy activities in a Novartis film shown to all employees.  I was even given the opportunity to give an auditorium address to the joint oncology and immuno-oncology departments at the NIBR Cambridge Research Hub from my unique vantage point of a simultaneous patient-scientist-and advocate.  How cool of them was it (!) to give a patient the opportunity to give the patient perspectives on clinical trial system issues but in my case also via the lens of a fellow scientist??  I feel very passionately about these issues and I think it was by far the best seminar I have ever given, one they will not soon forget. This was just one more example of the incredible support I have received!

For all levels of my employer (GNF, NIBR and Novartis) I am eternally grateful and I wanted to give the first public thank you to all of them – it is very much deserved.

Where are things now?

So where are things now?  My job duties and role continues to evolve to match my treatment schedules and side effects.  All levels of the organization have been very supportive of my various advocacy activities.  Now in multiple ways, both new and old, I am actively using science to try to help patients in need – really a health care company’s mission statement – which is a fantastic feeling to have.

My life changed due to cancer and thus so did some specifics of my work life.  But these changes have also opened up many project opportunities that were unimaginable 4+ years ago, projects which have been wonderful to behold and be a part of. Projects which could help change the practice of medicine.  I feel I am making the most significant impact on helping patients’ lives and having the most fun doing it for my entire life. How could I ever ask for more than that?

All thanks goes once again to the incredible support of all the various levels of my employer GNF, NIBR and Novartis.

And yes, as a card carrying terminal optimist, I still donate to my 401k retirement plan every two weeks – even with currently incurable cancer, I have not stopped planning for the future 🙂

 

11 Comments on “A Very Public Thank You to My Workplace

  1. You are blessed to be employed by a company that values you!
    I wish that there were more companies like this. Just because a person has this disease doesn’t mean they can’t contibute in a big way.

    Liked by 1 person

    • I agree – that is one reason I wanted to show an employer “doing it right” to serve as a positive example to others-

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  2. Hi!

    I too have been blessed with a wonderful past employer of 26 years a dental hygienist in a small specialty practice in Northern Vermont. I quit work due to my health 3 years ago. They are all still there for me and include me in all their fun functions. When they found out my situation they were adamant they wanted to help. The only thing I needed at that time was help getting my extensive garden mulched. I had about twenty people show up one Saturday with shovels and wheelbarrows and lunch. I have a beautiful scrapbook and photo album they made for me of that day all autographed with well wishes. When I needed surgery in Boston, my former boss and friend handed me the keys to his condo in the city. My husband used it for 3 weeks while I was in the hospital. It was right near the MBTA. It is funny, but I have never felt more blessed. The outpouring of love and support has blown me away!

    Liked by 1 person

  3. Your experience shows how important it is for companies to value employees and vice-versa. What a great story – because Tom, you’re impacting patients beyond what you would normally do. Novartis, thank you.

    Liked by 1 person

  4. I too had Folifuri yesterday unlike you I hardly have energy to write this comment but do have energy to enjoy your blog. I am one of the stage IV cancer patients you have helped emensely thank you Tom and thank you Novaris for letting Tom help and as always Tom you are amazing.

    Liked by 1 person

  5. My dear Tom, what a wonderful person you are!!! What an inspiration for others! I am sending thank you from the bottom of my heart to your parents for bringing up such a man! I am in Spain , continuing with ozone, and hoping that my two final reports after NY MRI in December on my way back to Ecuador and 3 mo after actvive treatment in March will help people on CCT with more options for Stage 4 maintenance. Holding you in my heart, sweetheart…. Stella

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    • Always nice to hear from you Stella – best of luck on your endeavors, as always I look forward to your updates although I don’t frequent CT as much as a I used to. Were you in NYC a few weeks ago? I was and I heard of a “Stella sighting” from one of your paparazzi – I tried to see you but my timing conflicts superimposed their will & it was not meant to be…perhaps on my next NYC trip if we can coordinate.
      Take care & let’s both keep keeping the beast at bay-

      -Tom

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  6. Oh, what a pity! Yes, I was in NY on Oct 5-6… My next visit will be on my way home from Spain for MRI and pump flashing – from Dec 6 thru Dec 11, leaving on Dec 12. This time I need to remove my chemo port, long overdue… If I can get pump flashing kits, I would not need to fly to NY every 8 wks from my Andes to keep pump working… I need it to work because of our experiment with dr Olmedo here in Spain. But they do not sell kits to anyone but providers of service… Working on this from European end… This MRI in Dec is crucial – if the effect is dramatically good, this will be a revolutionary event… of course, US will require a clinical trial, etc, and, as usual, Pharma will not need cheap effective tx, so, no trials, but in ozone world docs will use it after Olmedo’s publication of data… So, we’ll see rather soon, my dear friend! Love, Stella

    Liked by 1 person

    • Sorry I missed you at MSKCC – but thank you for your update and please keep me informed, either here or you know various other ways to get a hold of me 🙂 – the best of luck dear friend! Tom

      Like

  7. Pingback: Whistle While You Work | AdventuresInLivingTerminallyOptimistic

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