16 years post-op real life still happens

Dec 24, 2021

I don't know where time goes ... how itbeen three years since I last posted.

... and though 2019 was a fairly normal year, 2020 and 2021 were certainly not normal - at all for any of us. 

We all know all hell broke loose in March of 2020 - and then the longest year of my life began on April 1, 2020 - I was diagnosed with HPV P-16 Positive Base of Tongue Squamous Cell Carcinoma - throat cancer. By May 5, I was I was starting 3 extremely agressive sessions of chemotherapy (Cisplatin) and 35 sessions of radiation on my neck (5 days a week for 7 weeks).  On May 8 I had a J-tube installed in my "old stomach" for feeding and lived on a feeding tube for a year.

The two months of treatment were easy compared to the year of recovery from radiation and the remaining after effects of not only that but of chemo.  While I finally regained my ability to eat by mouth in late March/early April of this year, it is still a challenge due to a still sensitive throat, somewhat challenging swallowing, about 15% of normal saliva production and an always present coating of mucous while my body tries to compensate for the lack of saliva.

In the process of being on a feeding tube, I lost 55 lbs - from 174 to 120 pounds. My nutrition that year on the J-tube was cartons of liquid formula - that's it. I could barely sip water and hot tea. I wasn't able to take in (even through the tube) more than 900 +/- calories a day beacause each feeding would take a minimum of an hour plus, and was only about 300 calories each, plus trying to get as much water as possible (hydration) into the feeding tube took even more time.  

Imagine then starting to eat again - back to that place of ONE soft boiled egg filling up my pouch - how on earth was I suppose to EAT enough calories to maintain my weight and not continue to lose?  The criteria for having the tube removed was to maintain weight for a month without using the tube.  It took me 2 months to achieve that. And through forcing myself to eat through out the day - and eating (not our normal protein first then vegetables structured for weight loss) as much high fat and calorie foods as I could in addition to getting in protein and  vegetables - it still feels like I am eating all day long - to simply maintain 120 pounds. 

I certainly never saw myself in this kind of situation - but there it is, my friends!

But I'm a year and a half cancer free - and maintaining a normal, healthy weight and BMI.  Life goes on.

And a word about the type of cancer - notice I said HPV - Human Papiloma Virus - it's that stuff we are told to have our kids and grandkids vaccinated against when they are in middle school - THIS TYPE OF CANCER IS WHY WE HAVE THEM VACCINATED!

90% of sexually active adults will get HPV at some point in their lives.  There IS NO symptomology - and no test to determine if you have it. Most people's bodies will clear the virus out of their bodies within a year or so. Those whose bodies don't clear the virus can carry it for DECADES with no symptoms.  And at some point (mostly in adults over 40 - 50, or in my case, 70) the virus turns into cancer.  In some people it manifests as a genital cancer - cervical or anal.  In some people it manifests as an oral cancer.  If you are lucky enough to get the POSITIVE factor, it is highly (85-90%) curable with a highly agressive form of treatment and will not metastisize in other areas.  If you get the NEGATIVE factor, it has a much lower cure rate and poorer outcomes. 

What has and does get me through this day in and day out?  Courage, humor and grace.   Every day. 

My favorite humor in this?  Hey, the upside is that I lost all my regain - but I wouldn't recommend the diet.

Be well my friends - and here's to a better 2022. 

4 Comments

About Me
Carmichael, CA
Location
22.7
BMI
RNY
Surgery
06/16/2005
Surgery Date
Aug 23, 2004
Member Since

Friends 3

Latest Blog 11
June 8, 2007

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