Posted Dec 28, 2020 by Joel Bair
Sorry, its been so long since I last posted an update. So this is well overdue.
My treatments have been rigorous, to say the least. I've been through 9 weeks of high dose chemo therapy, and 7 full weeks of weeks combined low dose chemo therapy, plus aggressive radiation therapy. This has come with significant side effects. While treatment has reduced my overall cancer pain level substantially; nausea, fatigue, burning, bad metallic taste and loss of taste, along with constant ringing in my ears and vomiting have been the trade off. Oddly, along with the loss of taste, I have an unusually amplified sense of smell. Most days, that only proves to stimulate nausea and vomiting though.
The chemo therapy alone was doing little to control the aggressive nature of my cancer. The combination therapy has proven to be effective. My radiation oncologist rated my progress in the top 1/3 of his patients. And he continues to be very pleased with my progress. I have a small hard mass remaining in my tongue, down at least 80% from the start of radiation. And the 3 lymph nodes in my neck are noticeably smaller, down approx 50% since the start of radiation.
None of this is any kind of measure of the cancer remaining. There will be some scar tissue in these areas. Only a PET scan will indicate cancerous activity. And I have to wait 8 - 12 weeks after radiation stops in order to get that.
So today, I went in for another round of radiation and chemo therapy. As usual, on Monday I meet with the doctors for a physical evaluation. Today, I was given a temporary pass. As general inflammation and toxicity in my mouth were significant, Dr Schewe decided to pause treatment for this week. This gives my tissues time to heal and my body a break from the toxicity. I still have 8 more radiation treatments to go, and probably 2 more rounds of chemo therapy. But we resume next Monday.
Happy holidays everyone! I wish all of you a great 2021. Stay happy and stay healthy. And thank you, from our whole family, for all of your continued support.
Posted Nov 20, 2020 by Wilynn ZF
Just hanging out, waiting for Daddy to get zapped with some radiation.
Posted Nov 17, 2020 by Wilynn ZF
Autumn and Dorian outside of office while daddy gets chemo treatment
Posted Nov 17, 2020 by Wilynn ZF
Autumn wearing her support for daddy.
Finally a little progress
Posted Nov 17, 2020 by Joel Bair
Monday was the start of my second week of radiation+chemo. I had had 4 radiation treatments in the prior week and 1 chemo infusion. The ongoing pain had left me sleepless, Sunday night, but my determination drove me to persevere and push through the Monday barrage of Chemo + Radiation.
On this schedule, I meet with both oncologists on every Monday, for evaluation and check-in. First up was radiation (Schewe). Having established a routine with the technicians there I went in for the nuke session first an then to the exam room for evaluation. In a few moments, Joceline and I greeted Dr Schewe and he began his evaluation. He noticed immediately that my speech had improved slightly. Upon oral inspection he confirmed that the primary tumor site had been noticeably reduced. And he thought the Lymph nodes were slightly smaller too. He then proceeded to explain that the initial 5 sessions were hitting me with 3 x the normal daily load of radiation to try and get a leg up on things. I certainly approved. The initial sessions the prior week had triggered a series of side effects (stiff cramping neck muscles, general swelling of my neck and throat) but Schewe had called in a prescription to combat that (Prednisolone) and I had been taking it for 4 days, and it reduced the neck swelling issue. I treated the muscle cramping myself with stretching and massage with mild success. Muscle fibrosis is the cause and its generally unavoidable in radiation treatment situations. I'll have to stay on top of that.
We continued on with Chemo, right across the hall (Witta), who also noted the improvement in condition and was pleased.
I had expected to feel exhausted when we got home, running on little sleep and double treatments, but I felt energized and went on a brisk walk instead. All in all we left there with a hopeful and positive feeling. Moving in the "right" direction is very motivating. Hope this trend of continues...
Continuing the fight
Posted Nov 5, 2020 by Joel Bair
Wow! What a roller coaster ride its been the past week for Joceline and I. Severe pain kept me up Sunday night and Tuesday night. By Wednesday Joceline was fed up waiting for doctors to make a decision and took a more aggressive stance. She nagged the Dr's and nurses to prescribe some better pain management. i had already been on Advil + Tylenol + Oxycodone, and that was no longer cutting it. She was also growing concerned, as was I, over the lack of progress. No tumor shrinkage had happened, instead only growth. She pushed for a CT scan and a change of tactics. Wednesday afternoon I went in for a second CT this time w/ tracer. The results were dismal, but not all that surprising to me as I already knew things weren't going as planned. Several nodes were nearly double in size as well as the primary tumor. Honestly its hard to keep up hope when you're moving in the wrong direction.
My Oncologist referred us to a Radiologist, as well as another surgeon. Joceline and I have talked to at least 4 surgeons over the past few moths. None of them seem to appreciate the significance or utility of my tongue. So we were unenthusiastic to speak with another. Its funny how all the surgeons we talk to seem to say surgery is the only way. And all the radiologists we've talked to seem to wholly disagree, and say that radiation treatment takes the place of surgery when organ preservation is a concern. Foregoing another pointless discussion with a surgeon, we scheduled the first available consultation with the Radiologist MD. Note: FYI after the surgeons are done with you, they send you off for radiation and chemotherapy. This is standard practice.
So, today we met with Dr Schewe at the Red Rocks medical center in Golden CO. He assessed my situation and said 3 notable things. 1) he wished that we had met a few weeks sooner and started treatment, 2) organ preservation is of paramount importance in my case, and 3) he plans to treat me using combination radiation + chemotherapy with fully curative intent. Odds of success estimated at 75 - 85%.
So we preceded immediately with planning and preparation for combination therapy. He planned 8 weeks of Monday - Friday radiation treatments. Immediately set up my mold and markers. And began designing my custom ARC modulated IMRT program. I'm scheduled for Chemo on Monday and radiation following soon after. Most importantly, he gave me hope. In the first several weeks he expects a significant reduction in tumor size and increase in function. The final weeks of the course will be challenging for me, as the cumulative effect of the radiation takes its toll on my body.
Posted Nov 1, 2020 by Joel Bair
On behalf of my family, THANK YOU! To all of you who have given so generously, your donations your empathy, your time and words of positivity, hope and support. Every ounce of effort you give makes these dark days seem only that much brighter for me and my family. We are humbled by your generosity. And I want everyone to know how much we appreciate it.
Second round of chemo tomorrow.
Posted Oct 18, 2020 by Joel Bair
Here we go with round 2.
This past week the tumor took advantage of the chemical reprieve, and decided to gain some ground. it is now roughly 150% of its pre-chemo size. Monday, was good. I felt great. I put in a solid day at work and even jumped on a few conference calls. Since then, I've been in constant pain as the tumor is bursting through the side and pushing up on the top of my tongue. So I'm downing regular OTC pain meds to keep my sanity. Surprisingly, sleep is ok. Even though i wake up every 4 hr to take more pain meds.
So I'm pretty much all ready to go with more chemo tomorrow. Bring on the Cispaltin, Taxotere, and Udenyca. Lets kill some fucking cancer.
"bartender, a little more cytotoxic poison please"...