Whistle While You Work

As readers of this blog know, physically I have been going through a rough patch the past 6 weeks or so.  Thankfully, something that is now changing! The sudden ramp up of pain right before Christmas that I have written about which impacted me and my entire family physically, mentally and emotionally, the recent loss of a close friend  and the endurance of a round of radiotherapy the past three weeks, which was quite tough to tolerate (worse than chemo…). Of course, this was wonderfully balanced by the exciting forward movement on my Clinical Trial plans but it was still a lot to take, even for someone terminally optimistic!

I have not mentioned it but adding to this sudden change in daily life: for the first time I reached a point where I could no longer go to work.  As I wrote about in the fall, my company Novartis and its research institute I work for GNF have been tremendously supportive ever since my diagnosis – really above and beyond my wildest wishes. But there are basic requirements to working – just on the most literal level – no matter how supportive a company is!

A Point in Life I Wasn’t Expecting

Following Christmas, I had reached a point I did not picture myself reaching anytime soon – even a few weeks earlier I had not even seen it as a possibility (!) – between the pain levels, and even more importantly the level of opiate pain medications I was taking, I was unable to drive on a highway or sit up straight at a desk for hours.  I was so sleepy from the medications, it simply was not safe for me, or others near me, for me to drive!  Also with that much sleepiness, I was taking not one but two naps a day, which also is not conducive to working…

Without being able to commute or stay awake – work simply was not possible….

So following my company’s Holiday shutdown, I have been on medical leave from work.  Thankfully I had enough sick and vacation time available that I did not have to activate disability leave.  So I have basically been taking the worst vacation ever the past 3 weeks! Haha

Even though I have disability insurance through work, mentally and emotionally it was important to me to try to get through the radiation and its hopeful solution of my pain problem without activating it.  That was based upon the power of Stage IV HOPE  – that this was a temporary setback, a speedbump… I just wasn’t ready for the disability step yet in my life…

Emotionally, not working (and not highway driving) was very tough to take.  That sudden loss of freedom – being dependent on Uber or friends to go beyond my little neighborhood – just isn’t a situation a 44 year old expects to suddenly happen in his Life.  As recently as early December I was jetting off to the world famous MD Anderson Cancer Center to give an invited talk to their GI-Oncology department.  As recently as earlier in the Fall, I was doing a whirlwind trip to New York City and Boston to set up CRC research and advocacy collaborations.  Now in mid-December, I could barely leave the house without help.  That was a big mental and emotional blow to take!  Even in the house I was far from active – spending much of my time zoned out in a tired, medicated daze.

cable-tv-cartoon

I assure you, I am not the type of guy made to lay around and watch cable TV in the afternoon! But mentally, between my fatigue and my medications, it was tough for me to do more than that.  Which sucked.

I think the low point was perhaps finding myself watching the Kurt Russell and Goldie Hawn comedic tour de force (ha!) from 1992 “Overboard”.  Yep, that was a scraping the bottom of the barrel moment. (Fun factoid about the movie though: it was filmed in Fort Bragg, California which is the “big city” (population 7,273!) nearest (1 ½ hour drive) to the Redwood Forest (Montgomery Woods State Natural Reserve) where the banner picture for my blog was taken!)

overboard_2

A Big Day Friday

I’m excited to say I made it!  Radiation was completed last Monday. The nausea is mostly gone.  Between the successful pain reduction and an excellent palliative care pain team at UCSD – my use of pain medications has been significantly reduced.  I am now driving! I am no longer house-bound at 44!

So I am taking a big step on Friday.  Even though there is still some residual fatigue, I am attempting a return to work!  Mentally I am so excited by this…  A return to a sense of normalcy.  A return to society. 

It isn’t just me.  When I told my 9-year old daughter Amelie tonight that tomorrow “was a work day” for me – she got the biggest smile on her face and gave me a high five.  It isn’t just me that craved a return to normalcy.  9-year olds know that most Dads do not spend their days napping… it has been tough for her to process, no matter how much I actively tried to sugar coat it.

So I’m about to go to sleep.  Excited to wake up for work tomorrow.  Even thinking about it as I type this, I feel more healthy and invigorated! That is something for many readers to really think about.  Before you complain about your next work day – imagine suddenly not being able to do it.  Not being able to leave your neighborhood for that commute or otherwise.  Finding yourself instead welcoming your kid home from school with the fresh memories of watching Overboard in your head. 

For me at least, I’ll be whistling as I go to work tomorrow. 

To Life!

-Tom

whistle-while-you-work

23 Comments on “Whistle While You Work

    • Great stuff Tom😀 I always use my work place to access my health, I’ve been at the same job for 30 years! So I have to be pretty sick, not to go to work. I even worked right up to my double lung transplant. So being at work is very important even just mentally.

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  1. This resonated so much with me. I’ve been medically retired from my job – I have great insurance thankfully- but I miss it. I also miss the normality – we drove past my former workplace today and I almost cried from the longing to be back there. Wishing you a wonderful return to work.

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  2. Being back at work is so good for you and your family. When you love to work, it’s not really work, right?

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  3. Have a great day! Before Cancer and I became acquainted, I would dream of some time off work to be lazy and Netflix binge… During treatment it was unsafe for me to practice as an RN with my chemo fog. The day I was able to return to my beloved career, was pure joy! I hope your first day back is the best work day ever! Go get em!

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  4. Hooray Tom! You made me laugh, cry and understand what my husband has been experiencing basically during this same time period. He too will be returning to work on Monday. I know from reading this post, he is feeling elated as well. I am also very excited to have him come back to work with me. I had to giggle a little because we have a neighbor who shared with me last week that he couldn’t attend a fundraiser the night before for a cancer patient because his big toe hurt from stubbing it the week before. I couldn’t help but think that he had to be joking! Here are two very special people who are fighting for their lives, living with cancer and it’s side effects which includes pain that I pray I never experience and this guy couldn’t go support one of them because of a hurt toe?! He simply has no clue and quite frankly has missed out a ton in living life to its fullest. Thank you again for sharing and congratulations! Seize and enjoy this day!

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    • Thanks for the comment and sharing those stories Becky! It really is amazing how cancer in your own body or a close family member’s really opens your eyes… Hooray to your husband as well! As my friend and amazing fellow CRC survivor Chere frequently says – Carpe Diem!!

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  5. Hoping you have an enjoyable and productive day back at work. I can only imagine how happy you must be in returning to a routine where you’re spending time with co-workers and friends on common goals of research and projects as well as sharing smiles and laughter along the way. Wishing you continued strength and brighter days ahead as you prepare for your clinical trial. We’re all with you and praying for you on your journey.

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  6. Tom, hoping for many for quality of life days…. excited for the weeks ahead and hearing about your trial.

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  7. Tom, I am so happy for you, and the wonderful news that you shared about where things are at right now for you. You have an amazing way of sharing yourself with those who read your writings, a gift to all. Will look forward to hearing more good news. Warm thoughts from Michigan.

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  8. I’m so glad you are back online and off to work. I was worried. I want you to make that Trial….keep on keeping on.

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  9. Tom – I am so happy for you that you are feeling better and are able to go back to,work. When I tell people that I have stage 4 cancer, many of them have asked why I don’t retire and just stay home and rest. What they don’t understand is that for 1) I enjoy what I do, and 2) it gets pretty lonely sitting at home by yourself while everyone else is at work/school. I go to work for the socialization and normalcy that goes along with it. It is where I go that cancer takes a backseat. So…enjoy being back at work for as long as you are able. Nancy~

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  10. Excellent! Fantastic! Go for it! Way to go!…The bad news for me is my wife of 35 years passed away on January 31st with colon cancer after her nearly 4 year battle. It’s great the you are handling treatment so well, the Research/Trials are changing so fast that the longer you can be around the more opportunity at successful treatment you will have. YOU’RE going to be there! Successful treatment will be there for you!

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