Getting close to the finish line
I'm sitting here next to my wife as she gets fluids for hydration. She had radiation this morning and tomorrow is chemo. AFter tomorrow, Thursday, April 26, we will have five more rads and one more chemo and then we're done. Hopefully, forever.
She has BOT HPV-positive with three lymph nodes involved and two of those with extranodal extension. The BOT tumor was small, 1.2 cm, and was removed by TORS. Margins were negative. If not for the lymph nodes, we might have aoided the radiation and chemo.
She has continued to work, though that may end next week. She is definitely more fatigued as the treatments go on. Just two weeks ago, she considered quitting treatment altogether, but the comments on this site helped push her forward. Since then, after reading so much of what many of you have had to say, she has changed her attitude. Really changed. She meets the days with resolve and purpose and, even a smile.
Side effects are rough though, and from what I've read, even though we are so close to the end, the side effects will continue to get worse even after the last doses of chemo and radiation are given next week. Mucositis and phlegm and gagging seem to get a little worse every day. She rinses with the baking soda/salt mixture all the time, drinks aloe juice and uses MuGard prior to radiation. She feels like it coats her throat. It's meant to be used more often each day, but it requires an hour of no drinking/eating, and that's just not doable since keeping her hydrated is already a challenge.
She has not had a PEG tube. She has been on liquids-only for about three weeks, drinking Boost and broth. She's lost 15 pounds since all this started with surgery on Feb. 16. I'm sure she'll lose 10 more in the next several weeks, but she is trying to be diligent about the shakes.
Swallowing is a huge challenge, but she keeps at it. She also does some exercises the speech therapist showed us at the beginning of all of this.
The other thing we've done is about 3 to 4 hours each day on a nebulizer with just saline. She says it makes her throat feel better by keeping everything moist. She's also taken glutamine three times a day.
As for pain meds, she mostly takes advil/tylenol. She does use medical grade THC to help with the anxiety, nausea and pain.
As I mentioned in another post, her biggest concern is whether she will be able to swallow normally again. We're going to France in September and her goal is enjoy that famed cuisine.
One more thing, the radiation tech noted that my wife's neck had tanned rather than burned. She said her skin looked remarkably good. From the beginning, we've used hemp oil and pure aloe after each treatment and then before bed. In addition, she started adding aquafir to her routine in Week 3.
Anyone with any other tips that will help her improve swallowing once all of this over, we would love to hear about it.
If there's a tip on fighting this horrible phlegm/mucous, we are all in.
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