I have malignant salivary gland cancer

So, had the five rounds of high dose radiation on the back of my neck and that has seemed to reap immediate benefits on my neck, which I couldn’t move without pain beforehand. That’s now dissipated and I have full range. Throat is killing me to swallow and I’m coughing non stop, fatigued to no end, too, but that’s the game.

A follow-up full spine MRI last Sunday revealed there’s been no new hotspots and no growth of expanding ones. Meanwhile, after a hiccup with the blood pressure/cancer targeted drugs — which sent my BP through the roof to the tune of 200/130 — I am on BP meds and resumed the levantanib oral cancer pills at half dosage last week and the BP has stabilized (though still high) and the only side effect I’m experiencing is extreme fatigue and a bit of a headache.

Had an MRI on my brain today — made more difficult by my constant coughing — to see then status of the suspected benign schwanomma that is blinding me in my left eye. Will get results in next few days, though I don’t feel any additional symptoms like headaches. Maybe, hopefully, if MRI on brain shows everything is static, and oncologists think the pills are stabilizing my tumors, they can operate on my left eye, which remains closed.

Sigh.

I am reluctant to even share these things because it’s overwhelming. But then I hear about what my former colleague Jim Caple had to deal with re: ALS and realize I need to stay the course.

Just keep me alive long enough to fix me.

 

Never feel reluctant to share your journey here. Hoping things continue to remain steady for you.

 

Keep fighting the good fight, CD. Everyone here will do our best to support you. You have friends and more important family. You da man. Kick ass!

 

CD, you've got nothing but support here. Share. Vent. Whatever you need. Whatever help we can be we will be.

 

I’ll pile on and say please share all you want. Use this outlet. Especially if it helps.

Strength and support.

 

Keep hanging tough, Boogie.
You have the Warrior Gene.

Work it every way you can, friend.

 

What can your SJ teammates do to help you? Just say the word.

 

Does this mean the Chiefs are going to repeat as Super Bowl champs?

Keep pluggin, Boogie Man.

 

Keep Pounding, Boogie.

 

Maybe the Commanders's year...

Update: Got notice from MyChart that I have new test results of MRI on my head. Given my past experience of reading test results, not fully understanding them, and shitting myself as I go down a rabbit hole to find explanations before speaking to the doctor, I'm not gonna look. Unfortunately, I don't have an appointment with this neuro-oncologist till Monday, so it looks like it's gonna be a long couple of days. Then again, they might call me to discuss them earlier otherwise, I'm just gonna let it ride. Not knowing has its own benefits.

 

Keep keeping on. Hope you get good news and can celebrate with some more action.

 

Keep on fighting! There’s no news until there’s news. Keep loving your family and enjoying friends. And we have you in our thoughts here.