Thanksgiving Retrospective

It would e hard to imagine a better Thanksgiving. A wonderful gathering of family and friends for Thanksgiving dinner. My life has been enriched by being surrounded by the extended family. With some pain pills and lidocaine mouthwash I am able to feel human for 2 or 3 hours, enough to see folks having Thanksgiving food and fun. My gruel is about the same mac & cheese or soup but I do eat a little mashed potatoes and some cream corn. All tastes alike so its just a matter of finding something not irritating (like spicy or acidic) and the right texture to swallow. The pumpkin pie has cinnamon and that it too much, flan has the wrong texture. Everything is an experiment and the goal is just finding something I can get down my throat. 

This all came together despite my expressed wished that everybody just stay home. Aaron flat out said, nope, we’re coming. Michael and Sydney have been by several times. We knew we could not possibly put anyone up, Susan uses the second bedroom when my snoring gets too much. But our friends Bob & Bya  put up my sister & her husband and our friends (Bya’s sister) Kate and Tom are away traveling and they offer their house for Aaron & family. This is not only convenient and economical for sleeping it provides a place for eleven of us to gather for Thanksgiving dinner. In addition to the usual suspects Susan’ brother Eric, his wife Julie and their daughter Sam join in the festivities. No one could have planned this as well as it worked out, certainly nothing like this would have worked at our house. We also have the intermittent company of two friends of Bya and Kate, Lynell & Dennis, who are visiting from New Zealand. They are also staying at Kate & Tom’s house. It has a feel sometime of college gatherings of relatives, friends, strangers and travelers coming to gather in various configurations and all gaining from the experience. And a good time was had by all.

On Friday my son Michael  drove me to the radiation treatment, Susan gets a day off.  Next week, starting Monday is the ‘final run’, 5 radiation treatments, a long chemo treatment on Wednesday and then just holding through the three treatments the following and last week. Must be progress in there somewhere. 

Two songs for the season, one is corny or classic from the 70s, ‘Lets Get Together’ by the Youngbloods, perfectly appropriate to this time:  https://tinyurl.com/nrbq684

And for Susan, who has pushed, pulled, juggled and flowed; helping things come together without overrunning my very limited energy, its ‘Into My Arms’  I hold her and sway a little to the music, all the dancing my body can handle right now: 

https://tinyurl.com/htwfaex

Thanksgiving Celebrations

Thanksgiving week. The weekend came and went, mostly tired. Got a few chores done. Susan is preparing for the Thanksgiving day get together, not sure what shape it will take. To me it feels like an invasion but there is more to the family than my sorry $hit state. It is good for everyone to get together, tell the latest stories and watch the kids grow. 

Despite my discomforts there is much to be thankful for. The grandchildren are wonderful, the sons and spouse/friend are here, more extended family coming. I get a day off from radiation treatments. Thanksgiving is a food feast, nothing could interest me less. I had joked with the nurse that I live in Pasadena and in Old Town there are 100 restaurants, none of which interest me right now. Aaron drives me to the Wednesday rad treatment and sits in for the doctor visit. He gets to hear the doctor say I am doing well, should not need a feeding tube and, oh yea, now the hard part starts.Two weeks to go, I keep telling myself this progress matters.

It seems more a matter of surrender, I just keep plodding along to someone else’s plan. The song in my head is from Leonard Cohen but sung by his backup singers, the Webb Sisters. He talks of singing and I substitute dancing, I just don’t have enough energy to even dance around the house, I say:

if it be your will

From this broken hill 

I will dance with you

The Webb Sisters version of If It Be You Will: https://tinyurl.com/bc5hgj3

The End

I am a numbers guy, at least in part. I also know that numbers often tell only part of the story. Today concluded 25 of 35 radiation treatments. A week from tomorrow is my final chemo treatment and a week later that last rad treatment. I could be celebrating the progress but I cannot feel that way right now.  Entering the ‘end stage’ the last two weeks of what may a vision of hell. I am in pain but not a crazy level, head ache, mouth hurts, neck burns, food is a miserable prospect. But I am also disoriented, I do understand that the radiation does scramble the brain a bit. And I need more sleep. What is crazy is my head, my spirit, crawling toward a hint of light.

The song in  my head is The End by the Doors:

https://www.youtube.com/watch?v=JSUIQgEVDM4

This is the end, beautiful friend 

This is the end, my only friend, the end 

Of our elaborate plans, the end 

Of everything that stands, the end 

No safety or surprise, the end 

I'll never look into your eyes, again 

Can you picture what will be, so limitless and free 

Desperately in need, of some, stranger's hand 

In a, desperate land 

Lost in a Roman wilderness of pain 

And all the children are insane, all the children are insane 

Red Neck

A bunch of things are working: I am, I think, pushing down enough food and with some sleep aids and daily naps I am getting enough sleep. Mouth pain has been manageable with the ‘magic mouthwash’.  What has been hurting the last couple days is the skin on my neck. The Dr and rad techs say to use a salve, Aquaphor rather than the aloe I have been using. I use it and it does help but I understand that the neck skin can get seriously painful. I don’t know if it matters that I have pale white skin and used to joke that I would get sunburn from a picture of the sun. Or maybe skin type doesn’t matter with this kind of radiation.  And I am hoping that it does not get so bad that the skin becomes a major pain to deal with, one that would effect sleep and require more pain killers. 

Now I am officially a red neck. I put on my favorite red neck song and dance around with Susan. I have not been dancing much and it feels good just to move my body.

Come on, boogie along to Red Neck Jump by Humble Pie:

https://tinyurl.com/yc8xpmeq

Good Progress

Things are going better than expected. Although it takes a sleeping pill the last few nights I am actually getting some sleep and that seems to make the biggest difference in my energy, healing or at least endurance. It is now four weeks into the seven week rad treatments. I have lost the 10 pounds I put on to ‘bulk up’, exactly the  weight  I was many weeks ago when the whole process began. I ask the doctor about feeding tubes, weight, pain and future prospects. She does not want me on a feeding tube, she has seen people get dependent on them up to the level of their throats never recovering and could never eat by mouth again. It may be difficult, even painful but I need to keep my throat working. And I need to eat more, at least 2,000 calories a day.  Carry on, she says, you're doing well.

Eating is a daunting prospect for me, I am already pushing down eggs, egg nog, cheese, avocados, and protein drinks, high density food,  as much as I feel I can handle. I am not ever hungry, food tastes like metal, even regular or distilled water tastes like bad water from Death Valley. It is part of the process, keep eating, keep my weight up or keep weight loss manageable and both treatment and recovery will be more effective. So I resolve to keep going. Susan works tirelessly to push good food; salmon omelets, soups. No taste there for me but quality food intake. My neck skin burns a bit but I cover it in aloe and that helps. As long as I can eat and sleep I think I can get through this. In the evening I watch TV with Susan and I decide to try my nonalcoholic beer, wilt fizz too much? Actually it helps, tastes like bilge water with a hint of hops, ummm. And it helps keep me hydrated. 

Feeling cracked but goodness seems to peek through, so the song in my head today is Anthem by Leonard Cohen. Deeper song than even what I am going through. "There is a crack, a crack in everything, that is how the light gets in"

https://www.youtube.com/watch?v=6wRYjtvIYK0

A Good Day

Now, after a bad Friday, Saturday and Monday night Tuesday I have what could pass for a normal day in a life if it didn’t include radiation treatments. I have some breakfast. Real food, eggs, cheese, bread and avocado, not that I taste much but it is healthy and has a good amount of calories. The textures are more important than any other aspect of the food. Lunch is soup and more soup in the evening. Just nice that its not protein drinks out of cartons or perhaps protein drinks through a tube. I was told that I can see a doctor ‘anytime’ when I go in for radiation treatments and I am scheduled for one tomorrow but I ask to see a doctor and the admin person says no problem. But the very nice doctor is not a head & neck specialist and he suggests I hold my questions for tomorrow when I can see that specialist. OK, I just want to know whether I should take the pain killers, will I need a feeding tube and how much worse will it get. He only answers the last one-it will get worse before it gets better. And then it will get better.

And I tell him, some days are OK, today, out of nowhere, it is a good day. He says treasure these days. And I do. And I reflect on the tragedy in Paris. 

There is a time for everything. Turn, Turn, Turn: https://tinyurl.com/zz9f425

Not a dance song, or maybe a 'big dance song'

Ring Of Fire

Just some real hard days. Friday and Saturday had so much mouth pain I could not imagine how I would eat going forward. All I could see was a feeding tube and even heavier pain killers. Sunday was closer to normal. visited some friends and met with my mens group in the evening. It was a bit too much, I ate a little ice cream while staring at great burgers & beer. Even the ice cream had no interest but it is nice to connect with friends. Then Sunday night I take a Vicodin for pain and get so spaced out it is crazy. No sleep except for some nightmares. That med had worked well a few times before, but not now. My body was just shot all Monday. I went for the rad treatment and waited 2 hours longer as the person logging me in had not done so properly. I was advised I could protest to management but I was at a low energy point I could not think. I am not sure if the problem is the Vicodin, lack of sleep from pain or the chemo still coursing through my body. By the grace of God I get some sleep Monday night. First just an hour and a half and I feel like a dried out plant getting the first spring water. Then I doze off again for 6 hours and wake up feeling more human than I have in a week and  most pains faded to manageable. Whoo hoo! A real breakfast, if I can keep this up things could work out. Or is it  hubris again? 

The song playing in my head because nothing was a better descriptive line for the mouth pain than ‘Ring Of Fire’

https://www.youtube.com/watch?v=QfCOJLRk2D4