Keeping images to a minimum on this one because basically everything is gross. :)
There are sort of two distinct phases to dealing with this type throat cancer:
- The actual chemo-radiation phase (two months)
- The recovery from side effects of chemo-radiation
The most common and uncomfortable side effect is a called Mucositis , and it’s no picnic. It means that the mucous membranes inside throat structures are now thoroughly sunburned, and inflamed. The back of the throat, sides of the mouth, edges of the tongue, plus pretty much everywhere in the body that holds onto mucous that you’ve never even thought about is now producing either a strongly nauseating gag reflex, or thick ropy saliva like hagfish slime, which is impossible to wipe off, pick up, or cough up. SO not fun to deal with. Meanwhile, trying to swallow when your internal throat walls have turned into chalky and chafing is miserable.
Mucositis is such a drag that a majority of patients opt to have a feeding tube installed rather than try to eat with it. It’s a painful dilemma – right when you meed to be putting back all of the calories you’ve lost, and right when food has lost all taste and smell (making eating even less appealing), along comes mucositis to deliver a knockout.
Up until a few weeks ago, the goal was to avoid the feeding tube and the complications of surgery at all costs, and to do it the “organic” way by toughing it out. But as the effects of mucositis got worse, I was finding it harder to eat by the day, and was losing weight no matter what I tried. One more morning I just looked at Amy and said “I’m starving.”
We made the decision that day to call the Doctor and let him know we were opting in to the very thing we’d been trying to avoid all along. I scheduled the procedure for the morning after my “Gong Sound Bath” celebation.
I quickly realized this was not to be a trivial outpatient surgery. There was a full-size surgery team on hand, and I was put under “generalized” local anaesthesia, which means they can pretty much put you under or pull you back into waking consciousness on command (don’t worry, a friend had driven me to the hospital). All I remember fron the surgery itself is the old “missing time problem” – Twilight-Zone-style.
The next morning I returned to the hospital for a cleaning and training session, to learn all about the weirdness of “installing” tubes of nutritional supplement into your body without touching the throat. And yes, it’s every bit as bizarrre as you would imagine.
Unfortunately, the healing process from the tube installation hasn’t been at all what I expected – a week later and I’m still feeling like the surgery is fresh (super ouch), which lead to me going back to the hospital once more to check on possible infection or other explanations.
Long story short, the recommendation has been to once again dial up the meds, which makes me feel strung out all the time (for better and for worse). And the abdominal pain means I’m no longer able to do my daily walks, which really takes the wind out of my sails. I had naively envisioned this portion of the process as being less painful than the first, but the opposite is turning out to be true. I’ve got another specialist appointment on Friday, where we’ll try and figure out whether to go deeper on the source of abdominal pain.
This definitely was not turning out to be the vacation I signed up for. :) Onward.
Scott I don’t know if you remeber me but I’m Amy Yang’s mom. I read your blog and and in awe of your bravery and the way you are handling your journey! I only wish the best for you and a complete recovery. This will be a distant memory and you will come out the other side a new man. I’ll keep reading your blogs. It gives me inspiration
Hi Rasa! How wonderful to hear from you here. Thanks much for reaching out and making contact – makes a wonderful difference to hear from all of the corners of life we’ve been in touch with over the years. Thanks for the kind words, too. Hope all is well with you.
Scott,
Sorry to hear about the feeding tubes. I take sooo much for granted every day. My prayers are with you. I so much appreciate your courage and honesty with the world .
Thanks for the positive words and all the support Bruce – it means a lot to me.
Wish I could offer some meaningful words…but all i can say is u and yr family are in my thoughts. Sorry u have to go through this ordeal.
Thank you Rae – All forms of positive input help, so much appreciated. We’re getting there!
Aloha my friend,
I am so sorry to hear about all that you are having to deal with right now. Not sure if this would be helpful to you or not, but it’s something that may not be on your radar. Aloe juice is a commonly sold supplement that you can drink and gargle with that treats burns internally. And it can ease and cool the whole GI tract. If there are topical sensitivities where the radiation was applied, the best for that is fresh aloe gel from the actual plant. It is immediate in it’s benefit, but it tastes HORRIBLE! So don’t use that internally, please… :-)
Michi! How wonderful to hear from you. I absolutely 100% promise not to try and drink Aloe juice for internal burn usage :) Egads that sounds horrible. A doctor told me a bit ago “If you make the mistake of taking a swig of Listernine in the next three months, I promise you will never make that mistake again.” From what I’ve felt from small things, I totally believe him. Two things that are helping tremendously are 1) Biotene – a mouthwash for people who’s saliva glands have been damaged by radiation, creating the effect I described, and 2) Helios – a rinse that is made to help repair tissue that is newly damaged by radiation burns. I’m using both and can’t prove that they work, but the sure do feel right and I wouldn’t want to be doing this without them. Thanks for reaching out! -Scot
Hi Scot, hi Michi!
I think she was making a distinction between using aloe “sap” (good for external burns etc.) and using aloe *juice* (diluted and good for internal healing). I’ve drunk aloe juice to good effect for various internal issues brought on by my various health challenges.
Hang in there, my dear friend! Sorry about the post-op pain.
Thank you for the disambiguation!
Scot,
Bianka and I have been following your posts and are full of thoughts and feelings of care, concern and support about your journey to healing. Thanks for your bravery and honesty – I imagine sharing this must feel like a good way to out process and stay present to the changes. Your testimony makes all of us followers face our fears and worries about the ephemerality of our bodies. I feel I owe some grattitude for your sharing and am invested in your future. So sorry you have to live through this, but what you are giving is making something of great value for me and I imagine others too. When I spent a week in the hospital bed with sepsis years ago, I found the worst of it apart from the body violation of constant needles was the pure boredom of waiting. I hope your mind can do its magic and keep that at bay too.
Love from Boston,
Lee
Lee and Bianka – Your note is blowing my mind, as I really did not anticipate reaching so many people with this, or at reaching them at the “levels” that people are saying. To me it’s mot normal blogging, but I’m so glad the writing it making contact with people, and even more glad to reach people from years gone by (no need for by-gones course, just the happenstance of time). The bout with sepsis sounds absolutely horrible – I can’t imagine who that must have felt (actually I do have a friend who has been through it, so some clue via him – not pretty at all). I think for me, right now, the worst part is that I keep seeming to go from the frying into the fire. When I finished chemo-radiation, I really though it would all be downhill from there, but somehow everything has managed to escalate in the past couple of weeks, so that I now feel more in the woods than out of them. But I know there’s a light around the tunnel. Soon come. Thanks for the kind note.