To recap, after a lot of testing from January through April, I was diagnosed with Stage 3 Metastatic Squamous Neck Cancer with Occult Primary. You can read about that here.
Once all the prep was done, I started radiation every weekday. This will go on through the end of this month. Chemo is only once a week, thankfully.
Nothing seemed too different. I was fine at work other than a tough time with early mornings so I could leave work for my appointments without losing hours. There was a learning curve with my PEG tube, involving one small "splash accident" at work and a bit of infection around the stoma site. The first chemo experience was okay until the third day following, when my energy level crashed. I couldn't concentrate. An Ativan helped alleviate the moderate nausea within a day. That weekend, I went out for sushi with my older boys. Food still tasted normal. Meanwhile, my wife cooked nonstop, cramming in all the family favorite meals before became pointless for me. I felt like a prisoner ordering my last meal, each time.
Snickers didn't satisfy. They said taste would change- for now, because of the chemo and for the future, because the radiation is going to destroy taste buds, salivary glands and blister the inside lining of the mouth and throat. We were told that lack of taste may last 6 months to 2 years, or maybe always.
Within less than two weeks, I had painful mucositis inside my throat to the point where I lost 6 pounds and they insisted on ordering up some cases of "liquid nutrition". PEG tube feeding in an office setting is inconvenient, to say the least, and I was dead exhausted, so it was time to invoke the FMLA and take time off for the rest of my treatment. I had intended to work through at least the fourth week, but no joy.
I had distinct sunburns inside and out. Swallowing became more of a chore than it was worth. I was told to try ice cream to cool my throat and for added calories- it tasted like lard. Anything sweet was disgusting. While the flavor of some savory or spicy foods came through, it burned like hell going down. The liquid nutrition through the PEG tube kept me from losing any more weight. The effects of both radiation and chemo had built up to the point where I didn't feel I was safe to drive myself. My level of concentration was spotty at best (in fact, my wife is helping edit this tonight). I started losing hair. The field of radiation is extremely wide due to the unknown source of the primary cancer. From the sunburned area of my neck, I think they're hitting from my ears all the way down to my collarbone. I've lost most of the hair from my ears down, which is a pretty bizarre styling. All the treatments and various meds for symptom and pain relief have played havoc with my gut.
By midway through this week, the only things I can stomach are soft noodles and eggs. The "magic mouthwash" for the mouth sores doesn't go far enough down my throat to numb the right spots. They told me early on that I should keep eating small things, like pudding or fruit cups, to keep my swallowing muscles working even after I began the tube feeding. I can't swallow that. Fortunately, I can still drink water and chew gum and they've decided that's going to have to be good enough. I've got to increase my pain meds, even though the thought of using pharmaceuticals makes me uncomfortable. I'm exhausted to the point that I've had my wife drop me off at home before does even the smallest errands after my appointments.
I find myself falling asleep on the computer, watching tv, or reading. I fell asleep in the middle of a conversation with my wife the other day, just closed my eyes and was right out while we were in between a question and answer. That went over well! But the family has been very understanding. In fact, last weekend the youngest three kids had a chicken pox scare and they were excellent about keeping to the opposite side of the house from me to prevent infection. Fortunately it was just one of those weird kid things, and they're fine now. It's heartbreaking when they think a little dose of the cherry Tylenol and a hug should make me better, too.
Wehave started a fundraiser at YouCaring, Please visit and help us, if you can, to make ends meet.
4:52 PM PT: I can't say enough about the people here at DKos, You are all family to me. Your words and thoughts keep my spirits up and make this difficult time easier to handle and accept.
Thank you all.