In early 2023, Kevin had a fever, then noticed a lymph node swelling. He didn't think much of it, but a couple months later, it was still swollen and pretty large. He finally told me about it and I made an appointment with an ENT dr to get it checked out.
The appointment was 2 months away. When the day finally came, we were in the office and the Dr comes in. He introduces himself and takes a look, feels the lymph node and says "I don't know what it is, but it is usually cancer". Just like that. We have never met this man, are sitting there, with our almost 1 year old granddaughter on my lap and this Dr. drops the "C" word. We are sitting there in shock. So he refuses to biopsy without an ultrasound, which makes sense as there are a lot of veins and such in the neck. We push to get it done (as the dr is 1 hour 15 minutes away from us), so they make a call and can get us in immediately about 20 minutes away. We rush over, get the ultrasound, then rush back to the Dr for the biopsy. This was the Thursday before Memorial Day weekend. So we anxiously await the results. Finally the call comes in on Tuesday. It is cancer. Officially diagnosed as Squamous Cell Carcinoma. They then tell us, you should get a call by Friday to schedule a PET scan, if you don't call us. No call comes, so on Friday (6/2) we call and are told the first available appointment is not until 6/19. We again are shocked at this. Being in health and wellness and the knowledge we have gained, we have learned one of the most important things in your health journey is to advocate for yourself. Sometimes that means, making your own appointments. We found a place in the next town that could get us in on 6/8. Upon recommendations from some friends we made an appointment with an Oncologist as well as a 2nd appointment with another facility.
We walked into the first office, Beacon Clinic, and found it warm and welcoming. We had a great meeting with the Dr and his NP. He shared the PET results (which the ENT still hadn't called us with) telling us this is Squamous Cell Carcinoma, Head and Neck Cancer. This cancer is what the call P16+, coming from the HPV virus - so nothing he did or didn't do to "get cancer". This Dr shared that they had another Dr in their other office in Post Falls was involved in a current immunotherapy trial for this cancer. WOW ~ divine timing. We asked about the supplements we use and were told absolutely you can and should keep using them. Our 2nd opinion appointment was that afternoon, so we headed over there. Night and Day difference just walking in the door, very cold and sterile and definitely not a welcoming atmosphere and that just continued through the appointment. When we asked the Dr about supplements she said "absolutely not, you can ONLY follow this specific plan". We knew right then, this place wouldn't be an option.
We scheduled an appointment with the trial Dr and again were incredibly impressed with the facility and staff. We got the info and decided to pursue the trial avenue. There was lots of testing involved (things like hearing, dentist, etc.) to get a starting point and keep an eye on things the immunotherapy could affect. Over the next 2 months we jumped through all those hoops and get the testing. Then came the "randomization". With a cancer trial you can't do a placebo, so it is what they call "standard of care" which is chemotherapy and radiation OR the trial drug. From the beginning we were told you can pull out at any time. So when he was randomized we got the call that he fell into the "standard of care" arm of the trial. They called us into the office and the Dr walks in and says "You are out of the trial. You are too young and too good looking to just do standard of care, so we will get you this immunotherapy drug." They had a grant to get the drug from free since it is being trialed for this cancer (it is approved for 17 other cancers at this time) and insurance wouldn't cover it. He was approved for 12 doses of the medication. So finally on 8/2 he got his first dose of the Immunotherapy.
We were told he would get 2 doses every 3 weeks. We had some things on our schedule that we were concerned about being able to still do, so the dr moved it to 3 doses every 3 weeks. Thankfully he had zero issues with the immunotherapy meds.
THEN the bomb dropped. With the overwhelm of a cancer diagnosis and all the info we were trying to take in and things moving so fast, we were not aware that the Dr still planned to do a regimen of chemo and radiation. So, in total shock as this is dropped on us, we try to process. He is to do 5 doses of chemo, 1 per week and 30 radiation treatments.
Chemo and daily radiation started on a Tuesday. On Thursday, his blood sugar which had been pretty stable DOUBLED to over 300. Which makes him feel sick, and very tired. I quickly do some research and discover that the steroid they give in "premeds". That was a long weekend! Once we talked to the Dr and dropped the dose down, it was much better. Radiation was another beast. They wanted to do 30 treatments, daily Monday - Friday (an hour and 15-minute drive for a 15-minute appointment). We talked to the radiation Dr and were able to cut that down by doing 2 treatments on Fridays, one at 8am and another at 2:30pm (there has to be a set number of hours between). We were gifted a hotel grant for 5 nights in a local hotel, so spent Thursdays close to the Dr, making Fridays easier. We also advocated for just radiating where the cancer was instead of the "preventative" all around on both sides.
Radiation was the most challenging for a couple of reasons, they strap you to a table to hold you still, so for head and neck cancer, they make a mask to strap your head to the table to keep it still AND radiation literally is cooking you. So as a result, midway through, he got huge burns in his mouth and throat making it hard to eat or drink anything. We worked hard to focus on making protein a priority to maintain muscle health. He did end up losing around 25lbs in about 2 1/2 weeks and did have to get IV fluids a few times.
All in all he did really well throughout his treatment and we attribute that to our supplements providing the nutrition he wasn't fully able to get through foods.
Once chemo and radiation was finished, he continued with immunotherapy until the end of May. The end of December he took a blood test called a NavDX which is a circulating tumor DNA and is a more accurate indicator of cancer than all the scans. This test came back NEGATIVE! Meaning he was cancer free!!! On May 22nd he has the last immunotherapy treatment and was able to ring the bell!
One benefit through all of this is that he is no longer diabetic and off all the diabetes meds!
This is a journey we don't wish on anyone, but is becoming more and more frequent, an epidemic really due to so many things happening in our world.
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