blind sided by the db, but seeing more clearly

The double blind study didn’t work out, not yet anyhow. My head pain has all but disappeared. It had been slowly dissipating over the last few weeks. Three weeks ago, I stopped all pain meds. There is still sensitivity on the left cranial, and the blaring is still reverberating, but as far as pain, subjectively measured on a scale of 1-10 (how they measure), is barely a one. Hence, I’m way below their threshold (four) of being a valid study candidate. The good news is, the head pain is controlled.

I asked the doc if this therapy might control the ringing in the head. He did some research and found some studies in Europe which indicated that it does. He said that I could do the therapy, but it would cost me a thousand dollars (one week, 20 min/day). I told him, “look doc, let me be frank with you. When I was talking about head pain, I was giving you measurements against the searing nerve pain that the medication was controlling. The fact is, the ringing is painful. It’s another type of pain but head pain nevertheless. And doc, I’d think that you would want me to take this therapy as part of your test so that you have even more data even though you are not measuring ringing. This should be valuable data for you and your organization.” He agreed and said he’d call me next week to possibly allow me to take this therapy the week of June 6, free of charge. We shall see.

Still, swallowing is the biggest challenge. I’m back to eating pancakes but nothing much more solid. But beats living solely on protein shakes. My tongue hurts constantly from front to base.

The biggest issue I have is the ulcer that is located in the spot where the tumor was. That must heal. Dr Rad said that if it didn’t, then I’d need to invest about 45 days for another therapy in a hyperbaric oxygen tank. That would involve about two hours per day for about six weeks. But, before that is a consideration, I’d need a PET/CT scan to make sure all the cancer is gone, as the oxygen treatment could feed the cancer.

So, last week I had another (first since all this rad stuff) PET/CT scan. This scan lights up all metabolic activity from the top of the head the thighs. The technician said he could see through my bones and all the organs. And yes, my mother must be clairvoyant, because the results showed that I’m clean. No cancer. So went back to Dr Rad two days ago and had the throat scoped and he took a pic of the ulcer and it has improved from the last time. The hyperbaric oxygen therapy still is not off the table, but if the ulcer keeps improving, I may be able to avoid this investment.

The outside of my neck is still fat and ugly (to me). Dr Rad says that will all resolve itself in time as the lymphatic pathways renew themselves. Hopefully, I’ll have a jawline again. Until then, I’ve got to concentrate on constant stretching and eating bland moist food. And heal.

I can’t help but thinking whether the neck dissection and the brachytherapy was necessary, but I’ve got to catch myself and not go there. It doest matter. It’s done. Forward is the only valid direction. It’s the only direction where seeing clearly really matters.

4 thoughts on “blind sided by the db, but seeing more clearly

  1. Susan Forney

    You’ve been through so much and the worst must now be behind you. As always, you remain in my thoughts, prayers and wishes that your complete recovery is imminent. See you at the “Team Spaghetti” Bike Challenge.
    Lots of love,

  2. Stryker Warren jr.

    Fred: Delighted after this long wait there’s some amount of improvement–perhaps resolution. I hope this will continue to progress across multiple fronts: lymphs, ulcer, tongue. The fan club continues to go and is prepared to assist. U R the warrior Fred. Best, swjr


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