| Joined: Jun 2022 Posts: 4 Member | OP Member Joined: Jun 2022 Posts: 4 | (Insider reference explained...I love to use 'anyhoo' in my blog, and I sign off with a lower case 'eric' as a shout out to poet ee cummings, and I also love to use (some say 'abuse') ellipses.
I am currently still fighting oral (tongue) cancer battle # 3, and # 3 has been the biggest fight yet. (If this fight were a boxing main event, it would definitely be akin to Rocky vs Drago in Rocky IV, a real knock down, drag-out slugfest!) To summarize, and hopefully quickly, my history:
May 13, 2016 - First partial glossectomy. Margins were clear and all was good.
Jan 17, 2020 - Second partial glossectomy. (Unfortunately, I didn't buy the first on a BOGO sale...) Again, margins clear.
Nov 18, 2021 - Third glossectomy, this time a hemi-glossectomy. (How do the doctors determine hemi vs. semi. Couldn't it just as well be 'semi-glossectomy?') Anyhoo, free flap surgery, leaving me with a cool scar on my wrist up to my elbow, and a half-Frankenstein tongue and half-birth tongue. I was OUT for 9 days after surgery. No joke. 9 days. Perplexed the doctors and concerned my family. I would flip out every time they tried to bring me to, one time pulling a nurse on top of me, another time grabbing at my tracheostomy. Well, after a 20 day hospital stay, released into the wild to start my PS life (post-surgery) which would include both radiation and chemo.
After 33 radiation treatments and 6 chemotherapy sessions, I was left for dead, or at least it felt like that. I rang the hell outta the bell after day 33, but I was WIPED OUT. Now, trying to find a new normal. Struggling with tongue pain, and I have had a sore throat since I woke up from surgery, and the lymphedema in my neck makes me look like a rooster or turkey (although, to be fair, I have recently started PT for it, and it is helping. Currently, I just feel like I look very overweight in my neck.)
I don't know what I am doing here; I only hope to be encouraged by others' stories, and maybe encourage others along all our crazy journeys (Shout out to all the other non-smokers and non-chewers among us who were diagnosed with oral cancer. I mean, WTH, right?) - eric
-SqCCA Feb 2016, partial glossectomy -SqCCA Jan 2020, partial glossectomy -SqCCA Oct 2021, hemi-glossectomy, lymphectomy? (lymph nodes left neck removed)
| | | | Joined: Aug 2020 Posts: 175 Likes: 53 Assistant Administrator Senior Member (100+ posts) | Assistant Administrator Senior Member (100+ posts) Joined: Aug 2020 Posts: 175 Likes: 53 | Eric
Wow, you have been through quite the cancer ringer. Your stay positive attitude shines in the few posts I just read. So, keep it up! As for encouragement, I can tell you that I had to judge my improvement in weeks and months since radiation (I was stage 4 but did not get chemo as only had cancer in one node and the it was only found inside the node). I kept a journal, few pics, and a few videos to family so I could see the improvement. I tracked everything from calories consumed, to exercise, to sleep, to spiritual time/yoga, etc.
My favorite book about how to live to try to avoid cancer is called Anticancer. Tons of information. Took me a long time to read it as it is so data rich.
Stay safe and keep the faith, Nels
OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
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