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

Half Time

Crazy day, didn’t get quite enough sleep. Susan, for once, got out to a yoga and Zumba class, good for her. Went in for the 18th rad treatment, 17 to go which means that in number count this is half way. I know its more geometric or at least nonsymmetrical increase in pain and problems as the treatments go on but each treatment is a step towards the end of the process. I was feeling relatively good and thought maybe I had a view how this will play out with pain coming and also tapering off that I maybe can see my way through. What hubris. When I got home I took a nap and woke up with  my mouth on fire, in new spots. Magic mouthwash and I still can’t eat anything. Not applesauce, apricot juice, pumpkin pudding. Susan is out to get some eggnog and see if I can handle that. I take a real pain killer, for only the second time, and that calms things down but I still feel my mouth and I worry that when the pain killer wears off it will not be good. And I don’t want to be on them all the time. It does seem like the pain in the back of my throat is manageable and the skin burn on the skin around my neck is manageable so I am hoping that this new mouth pain will fade to a state that is manageable with oral treatments that allow me to keep eating. Or, the possibility of a feeding tube intrudes into my consciousness. I already can’t taste anything and food is not interesting, I treat it like medicine and take it on schedules but If I cannot get food down because of mouth/throat pain then it may be necessary. But, no matter what, its half time. And progress towards the end. 

Theme song for this part of the journey, Ol Man River, also incidentally, my father’s favorite song: http://tinyurl.com/pry33cz

Chemo Part II/Spirit In The Sky

This is chemo day part II, or two down, one to go. According to my blood tests I am pretty close to ‘normal’ so I don’t expect there will be adjustments to the chemo treatment. The first one hit pretty hard in feeling invaded and waves of different energy every few minutes for a few days.The nausea was managed well by some meds from the Dr. I am three weeks into the radiation treatments and feel weak from that. I sense that I have a body memory of the first chemo. The last couple days my body has been anticipating the impact of the chemo and I felt weak with little waves of nausea. So it comes a a big surprise that the chemo goes really well. I do not feel nausea during the 5.5 hours of IV infusions. The chemo MD and nurse say I am doing well and for once it doesn’t seem like they put on a fake cheery face for a patient. They do say it will get worse before it gets better but it is good that I am still eating and have not lost much weight and my body is handling the chemo treatment well.

I have enough energy to walk three blocks for my radiation treatment (16 down, 19 to go) and the rad techs, again, ask about music choices, I, again, say Beatles please. But their music streaming channel must be ‘Beatles era’ not pure Beatles and I hear Yesterday, then a Led Zeppelin number, then Spirit In The Sky and then Yesterday again. 

Now those are good songs but I have mixed emotions about Spirit In The Sky. You know about mixed emotions? There is one definition I like: “when your 16 Year old daughter comes home at 4 AM carrying a Giddeons Bible”. Its kind of like that. Spirit In the Sky is a great song, truly inspirational. Just maybe not the one I want to hear locked in a clanging  X-ray machine with 7,000 RADs slamming through. “Take me up, Spirit in the sky’” and “I’ve got a friend in Jesus’; yes, seems true to me, just not right now please. How about sending some healing rays?

As it is Wednesday we meet with a staff rad MD. We are doing all the right things and if I can keep my weight up I may not need a feeding tube later as some people require. And post treatment recovery is better for those who keep eating and keep their weight up. She says the throat discomfort is part of the process but does prescribe a mouth treatment that it is hoped will numb things enough to keep me eating. And she suggests another skin cream to help manage the eternal radiation burn on my neck. I keep downing liquid protein drinks, need to hit 2,000 calories a day. Maybe the Spirit In The Sky is sending me protein drinks. The Spirit looks a lot like Susan.

Spirit In The Sky: https://tinyurl.com/3k35a22h

Bliss

Monday is a it rough day. I have enough energy that I can drive to the radiation session but Susan has to to drive back. I am focusing on eating. Food is not interesting and I need to keep up my weight and caloric intake. Susan makes up a food log  and I try to take in something like 2,000 calories. Mostly soft food: soups, protein drinks, ice cream and egg nog. So far its working I felt like I had a head ache in the back of my head, rubbed it a little and out comes a handful of hair. Chunks of beard are descending too. No playing Santa Claus for me this year. Not enough energy to go to Monday night dance. I could sit there and smile or walk around but my balance and energy are just shot right now. But there is still this daily progress, 14 down and 21 to go. Wednesday is the next chemo treatment and I am not looking forward to the waves of chemicals that will last for days and yet I know each day is closer to the end of the treatments. While I can’t dance, the music that is soothing to my soul are songs like ‘You Are Safe’ and more recently ‘Bliss’. 

Strange that a song called ‘Bliss’ would come present. Susan and I first heard it at Bhaktifest, a three day celebration in the desert featuring kirtan/chanting, yoga, lectures and some dance. The Sikh lady singing it was just on the event staff but everyone knew she had a good voice and one of the bands gave her a few minutes of their gig time to sing two songs. Big mistake, can’t remember anything about that band. She started singing and Susan and I were soon crying. A year later we heard her, now definitely on the program, and were crying again. Today I rock back and forth listening , singing,  crying. 

May Bliss find you wherever you are:http://tinyurl.com/oyuzlrw

The Second Hubbard Street City Dance Wonder

Susan arranged for season dance tickets with the Hubbard Street Dance group being the top of the list I wanted to see. I saw them some years back and they were sweet and contemporary without the distractions that sometimes come with more avant guard troupes. As I am a Chicago boy I lived in walking distance (although its a rough neighborhood, taking life in ones hands to walk it then) of their Hubbard Street location. I did see that Second City is to perform with them, so I figured I can’t lose, Second City is one of the funniest comedy clubs in existence. We saw them a couple years ago in Chicago and laughed ourselves silly. I even forgive them for their building displacing Piper’s Alley, the first head shop I encountered in Chicago in 1964. A place full of black light posters, incense, Indian prints and other things magic to a 14 year old. I figured that they would alternate skits/dances and that would be fine.

Giving a literal description of the performance would miss everything. This blending works remarkably well. I think it was a big risk for Hubbard Street and could have gone wrong, but it didn’t. Its mostly a light, laugh filled performance but the dancing fits in perfectly with the comedy. And there is one set of a series of couples doing duets that is so beautiful I wish I were 20 again and could train to dance like that. I not only laugh a lot I actually forget that my throat is aching. Don’t miss a chance to see this show. Don't believe me? Read the critics:

Critics Review: http://tinyurl.com/pou5bm4

Mouth has been miserable, beard hair falling out in chunks. I think of my ‘theme’ song, ‘I’m So Glad’ but that is a later song, a victory song, now I am comforted by hearing ‘You Are Safe’ playing in my head.

Be safe: http://tinyurl.com/nos6bhs

Dancing With The Boovs

Things are feeling just a shade of early grim. My mouth is in discomfort. The Dr  says there are ulcerations in my mouth. Not a surprise, actually expected, just later in the process. He thinks that radiation reflection off my crowns and fillings are frying local tongue and mouth skin. He prescribes a ‘miracle mouthwash’ which is blended mylanta, lidocaine and who know what else but it works. If I gargle with it my mouth is numb enough to eat and its good for getting to sleep too. 

So at this time, rather than the deep, darker films I feel like watching (The Grapes of Wrath or even better The Seventh Seal) Susan gets the DVD ‘Home’. Wonderful animation.  It maybe helps to have grandchildren, to see it through their eyes. But here I am laughing and dancing through it. And there is one wonderful scene where the Boov hears some funky music for the first time  and their multiple feet cannot stay still. Seems like music and dancing are common across the galaxy not just on planet earth. Susan & I dance around the room to all the songs in the extras part of the DVD. Life is good.

Heck, I want to heal myself and  heal the earth and now maybe we can heal the galaxy with music and dance.

Dancing In The Dark from Home:https://www.youtube.com/watch?v=NaSN4265Tj0

I Hope You Dance

For the last couple years I have been a member of a mens group. Mostly we meet and discuss things and support each other through good times and less good times and the transitions between them. Tonight we met to help one of the group pack for moving. This fellow has been in a wonderful house for 25+ years and it is now time for him to sell the house and move on to new adventures. While there are some positives in moving on, this is a night based in sadness even though the spirit in the room is quite cheerful. We sing theme songs from old movies, get up to date with each others recent developments and actually do get 20 or so boxes packed. He is a friend and also a dancer. He passes on to me a small book with a CD in it, ‘I Hope You Dance’. I am not sure I know of a C&W song that hits the spot so well. We all just keep dancing through good times and bad.

http://tinyurl.com/o4m963l

I Hope You Dance by Lee Ann Womack

Boys Don't Dance

When I was about five I can remember dancing and swaying to music. That was the last time for many, many years that anyone thought my dancing was cute or attractive in any way. It was very simple, boys don’t dance. In grade school and high school I pretty much avoided dancing since I would look like a jerk, college too. Oh, it was nice to have a slow dance every now and then, loved the contact and no one, expect my poor partner, could tell my feet weren’t synchronized to anything. 

I was 30 in 1980 when I arrived for a NASA position in Pasadena after a 3 year US Navy job in  London  and shortly decided I could do things I never had done. I learned to swim, did some rock climbing, jumped out of a perfectly good airplane. And, gulp, I figured out I wanted to dance. I took one swing step class at the community college but I wanted something beyond social dancing. So I went to a local dance school where Jamie took my money and put me in a level 1 jazz/modern dance class  (they didn’t have anything lower or remedial). It was a real class and I felt like a lumbering giraffe among the fluid gazelles. I learned that after lots of practice my capacity to remember a routine increased and that lessened my embarrassment.  In the all level classes there were people who danced for a living or dance was part of their fitness for the entertainment industry. They were on commercials, music videos and in performances. No one ever had an unkind word to say to me maybe because they sensed that I was ‘serious’ in my efforts and bliss would break out across my being occasionally. 

I remember the first time, it was a routine to On Broadway by George Benson. Suddenly it wasn’t work, a memorized routine or watching others trying to synchronize. It flowed from outside and within My feet went where they were supposed to go, all by themselves. And I couldn’t stop. 

I was still never much of a dancer, never performed. The only role once offered to me was to play a stationary tree. They were trying to include me but, no, thank you. After a year or so I stopped going to the class, still a desire to dance but didn’t feel that class was where I needed to be. And I had proved, to myself at least, that I could dance. And that was my dance experience for the next 25 years. I no longer felt socially or personally blocked from dancing just not many opportunities crossing my path. 

But come relive that first time with me; kick ball change, cross step, cross step….http://tinyurl.com/p26umtn