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.
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!)
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.