Return To Dance

For the last couple days I have been getting excited about going back to Monday night dance, Monday comes and I am tired and feeling a bit wimpy but I push myself enough to go, And it should be good for Susan, too. I can alway rest during dance or even leave early if I have to, so its go for it. First time in two months and it feels so good to see everyone. If hugs could heal I would be the healthiest person alive. Another lady who has been in her own engagement with cancer is back for her first time. Another dancer who has been away at school is back for a visit, happy to see him again.The DJ plays some great selections including someones version of Leonard Cohen’s ‘Who By Fire’, how many times have I listened to that in the last few weeks…”and who, shall I say, is calling?”

There is not much crossover between Zumba and Monday improv sessions, only a part of the session gets up to Zumba exertion but the DJ plays “Fireball” got to be on Zumba’s top 10 hits. And I can’t keep going, have to sit down. My physical condition is terrible. I have trained the last couple years with a heart monitor to get maximum effect from training so I am surprised that just moving along relative slowly gets my heart up 100+BPM and anything more I go to 150 BPM. Now I had a low resting heart heart rate, usually about 55 when I woke up and at Zumba I would have to work up a soaking sweat to get 145+, and I would keep it there. I remember a couple years back on an a-fib procedure where they would not let me leave the hospital until my heart BPM was at least 40. So I know I am remarkably out of shape and will have to walk a lot and get back into exercise carefully. 

But dance has its own wonders, dance alone, with another person, with the group. Flow where I can without spinning and jumping but it will happen again. We leave after the first hour, reconnected.

I was feeling really sorry for myself, that the healing is so slow and then I go online and read other’s recovery reports and realize I am doing remarkably well. It is actually It is ‘only’ four weeks since my last chemo treatment and they run in my body for three weeks. And tomorrow is three weeks since my last radiation treatment. I have not lost weight, no longer taking pain killers. My mouth still hurts but not with the big holes, they are smaller and my tongue discomfort I have come to understand comes from nerve cells regrowing and reconnecting, pain with a positive spin.  The skin on my neck is nearly healed, just a few prickly points and I have a rash which concerns me so I make an appointment to check it out. 

In the company of Susan and my many friends I feel safe. So the song for now is “You Are Safe”, enjoy: http://tinyurl.com/yc47eje5

A Christmas Miracle

In A Course In Miracles we are reminded that “there is no order magnitude in miracles’”. And so it is around Christmas this year. This ‘small miracles’ are miracles enough. Two weeks out from the last radiation and  the last day of the third chemo treatment period things are getting better slowly. 

Yesterday I drove a little. Not far but enough to know I can drive if I need to. Today I walked around the block for the first time but by far best of all, I tasted some soup yesterday. Up to now all food has  been like medicine, pretty much tasteless and  painful to eat as well. Now the pain in my mouth is receding and somehow we decided to get some Chinese Wor Wonton soup based on it not being spicy and having good clean nutrition. It worked! I could even taste a little of it. Maybe 10%, maybe 2% of its flavor but thats  more than anything in the last eight weeks. I’m still not hungry but its wonderful to taste anything. 

And two days ago, on Christmas Eve I drove to the local restaurant (Panera) for breakfast. First time eating out even if it is just eggs. And on Christmas Eve and Christmas day my son Michael, his girlfriend Sidney and her Mom, visiting from Florida, came for a long visit. I am stunned that such a slight improvement in my physical condition can make such a huge difference in my being able to be with others. I’m still trying to decide whether this is a holiday to remember or hopefully forget. But if I remember it, it will be remembered as a  miracle.

What's Up

As i go through the early days of recovery I have a song in my head, maybe in my soul. It is a surprise coming from a deep place even though it may not seem like a deep song. I’ll try to explain. Unlike ‘I’m So Glad Im’ Standing Here Today’ it is not about victory. The war is not over, only winding down and no one has won. The song is ‘Whats Going On’ by 4 Non Blonds my preferred version is a cover by Lady Gaga:http://tinyurl.com/mpcc4tz ). I first heard the song in a TV series Sense8 where it was perfectly placed to reflect the confusion in the struggle for consciousness. 

‘And I scream at the top of my lungs, WHAT’S GOING ON!’. A point of consciousness screaming to God and emptiness. 

The pain is slowly receeding. Yesterday, Wednesday I went out for the first time and had lunch with friends Susan and I used to walk with around the Rose Bowl. I just have tea but it is good to be out and to see friends not only connected to them but seeing their connection to each other as well. In the evening my mens’ group has a virtual meeting. Its all I can do to stare at my iPhone and participate but I get it again, my connections and the connections with each other. Thanksgiving was the first time I noticed that, I could see past my condition and see the connections family and friends have with each other as well as me. So actually, its not about me.

What has emerged is a part of me screaming out now, now that it is ‘safe’. I think on a subconscious level I had to keep control to get through or the only option would be a despair from which there would be no coming back. I must have held ‘strong’, like ‘strong hearts just keep going on, and thats why I’m still standing here today’ . But I’m not strong, I’m not standing, Im crawling and I didn’t beat anything, I just survived and wonder what’s going on? I remember reading about interviews with people who survived the Nazi death camps. When ‘liberated’ the people were told they could go home now and they wondered what to do. They had fortified themselves with hopes and images not of release but justice and maybe retribution, how else to make sense of their suffering and keep themselves together. So I am not the strong heart I told myselfI was, I am none of that at all. I meditate a bit and I learned early that my whole social identity is just a story I tell and get general positive feedback. Meditation strips those layers. In the last couple years I have gone deeper and had to confront that I am not the story I tell myself. I am literally called into being by my relation to others. 

And for weeks now I have been a golem/gollum, take your choice, traditional Hebrew or current Hobbit, they merge for me, into me, no energy and a struggle for consciousness. How Susan has survived this she may be able to explain someday but day after day watching me crawl out drugged up yet still in pain eating food that tastes like soap water every meal and in pain doing that. 

But its OK to scream now, it is safe. Instead I play ‘What’s Up’ and hold her, tears flowing down my whole shaky body..

Begin Again

In our Monday night dance the music comes in two sets of waves. Towards the end of the first set the pace slows down and people often go into yoga rest pose, sitting meditation or walking meditation. The DJ calls us to join the next wave with the invasion to ‘begin again’. From where we are, right here right now. 

So I am called with this process. It is not only not over, its closer to half time than finished. I have completed the 35th radiation treatment. Our friends Bob & Bya go with Susan and I for the last session. It takes forever today. Radiation treatments are running behind and we wait a long time. Our friends are patient and supporting. Susan gets to see the X-ray machine.  We wait even more time to meet with the oncology doctor. She says things are looking good. She says nothing will change tomorrow. With luck, in a few days I will notice decreases in pain and by next week may notice changes start to take place as my body recovers. I am achy, tired and in pain but it is still mentally warming to know that the treatments are over. Things may get better slowly but they should not get worse, which always hung over the medical prospect before. 

Sunset on Sunset. I have been going to the Kaiser hospital on Sunset Boulevard these 35+ times now. Tomorrow will be the first weekday(besides Thanksgiving) in 7 weeks that I will not be going there. I can sleep in and can adjust my eating and meds to suit my being at home. And Susan or another friend will not be occupied with driving me. Should free up some time and energy for her. 

I will hold up posting for a bit. I will come back if some insight or something worthwhile pops into my head during the healing process. The purpose of the blog was to follow my treatment and to keep interested people up to date, I trust it has done that. Call or write, check back when you want, thank you all for reading and being part of the network of family and friends who have supported me.

A little premature as I do not feel like I am ‘standing’ yet it feels like the time to cue the theme song; ‘I’M So Glad I’m Standing Here Today’ 

https://tinyurl.com/y7focey2

Chemo Brain/Mr Sandman

Sunday is a strange day, not so much the various pains and food challenges but one more mental. Often in my life I hear songs in my head. I think a lot of people do, I just hear a lot of them. And it not usually a problem, rarely does one get stuck in my head. Generally its like a juke box/playlist and if I don’t like what I’m hearing I just choose the next selection. But not today. When looking for the link for ‘Round And Round’ by Perry Como for the ring posting I  come across a song from the 50s I cannot get out of my head, its Mr Sandman by The Chordettes. Hearing it once might be ok but it will not stop. My brain is like that. I have heard it called ‘chemo brain’ maybe radiation brain too? I cannot always process words and prefer reading short internet postings than reading a book or newspaper. My whole attention span is shot, Susan notices it more than I do. 

Monday comes and it is a bit rough mostly due to lack of good sleep. If I sleep well the whole day just works better and there does not seem any way to assure that. Mr Sandman should be my friend. Still, rad treatment 33 is completed, two morel to go before the next phase.Susan is going to dance tonight, I hope its wonderful for her. I miss the pulses that clear the head and fill the spirit. I dream of dreaming.

See If Mr Sandman is your friedn or if an unwanted song gets stuck in your head, you have been warned:

https://www.youtube.com/watch?v=CX45pYvxDiA

Rings!!!

Gold rings! Wedding rings! Susan had an interesting engagement ring which got beat up and repaired periodically. Mostly we wore simple wedding bands. So I asked Susan if she wanted a proper diamond ring that will not have to survive classroom teaching or child raising. No, she suggests we get new matching wedding bands. (Better than some of her ideas which included matching tattoos.)

And old Perry Como song, about the joys  a wedding ring can bring:https://tinyurl.com/ya2bbmmt
(Yes, we are old enough to remember this era and this song.)

We visit the mall and chain stores and they have few choices. Then we go to a several real jewelers and there are a not many more choices except they can custom make anything we are interested in and they have catalogs we look at for samples. Internet to the rescue, Susan finds a place with a shop in LA & SF called Brilliant Earth and they have a large custom ring selection. Even with all these choices we find only two or three that we like and are mostly taken by one called ‘Polish Vine’. We make an appointment with the jeweler on the west side of LA and go hoping to see a sample. They have none but recognize the Polish Vine design. Evidently it was a custom one off they did for a customer and show a copy in their catalog, but yes, they can make them for us as well but as custom work we have to pay up front and cannot return the rings. 

Here is how the design looks:

We wait several weeks for delivery, finally they come. Beautiful, just what we wanted. 

Here is how they look on us:

Inside my ring is engraved “One Heart” and in Susan’s is  “One Love”. Where did that come from?

Mr. Marley please: http://tinyurl.com/8avfzsn

Turning Point

I was not sure when it would feel different with the end approaching, but it feels like the turning point has arrived. Today is the fourth remaining radiation treatment. Three more next week. It is pretty complicated managing pain medications but I have been sleeping so things seem to work out. My neck skin is pealing a bit, so far nota bigger problem that some have reported. May get a few of those in the last few days. I have eaten a bit less, the chemo treatment really makes me nauseous despite the anti nausea drugs. But I have built up enough weight buffer to make it over the next few days and I expect the nausea will decrease although I still will have not interest in eating. The chemo effects come in waves; nausea, energetic, tired and ‘normal’. The chemo will work for another week or two but the effects seem to wane after a week. Last radiation treatments next week. Then the recovery. Physically beat up but looking toward the light, and its getting brighter.

I’ll just call it a turning point.

Turning Point by Jimmy Cliff:https://tinyurl.com/ydfkwgbw

Do You Feel Good?

So many titles come up for today; Three Is A Charm?  The Longest Day, Some Hints Of Hope, Chemo day III. Almost went with The Longest Day  but I think I will go with the sound in my head, Do You Feel Good.

Wednesday is significant was the last chemo and 30 out of the 35 radiation treatments. It it also a difficult hard, long, long, very long day. We are up early it takes me a long time to eat, even something like oatmeal. We leave home about 7AM and get to Kaiser at 7:45 AM. They take me in quickly this time and have an IV in before Susan is done parking the car. But the chemo treatment will end up taking 6 hours. During the session I talk to the doctor and tell her I have three elements in my life right now: managing pain, eating and sleeping. The sleeping medication was  not working so she, meaning I, will try a different medication. Pain is managed by the more frequent use of pain killers, still well below maximum dose limits. As to weight, two doctors and several nurses are amazed that I have actually put on a couple pounds over the last two weeks and I am still the healthy weight I was three months ago. They don’t say amazing but they all comment. I explain  that Susan is very diligent in pushing food and I present an image of the French force feeding geese to make pate. After chemo I walk several blocks to the radiation treatment. Just another day there. And later we meet with the staff radiation oncologist. She is also impressed with my weight management and is quite cheery about ‘only 5 treatments remaining’. She does mention that basic recovery takes a month or two and the two effects that take the longest to recover are taste and dry mouth, which can take a couple years. 

Although physically exhausted and plenty of pain to go around I feel emotionally lifted. 

Don’t know why but an old Richie Havens song plays in my head its Run Shaker Life/Do You Feel Good? I like it as I can just rock back and forth to the sound, deals with rough times and still asks "Do you feel good” and I can answer, at least emotionally, I feel good.

https://tinyurl.com/ydeb3bnx

Hard Day

Monday was just a bad day. Didn’t get enough sleep, thats always bad. Then I get my radiation treatment and it burns a bunch.I ask to see a doctor and I do get several prescriptions renewed. But I am tired and out of energy,almost fainted in the doctors office. And then in the afternoon I had a frightening nausea episode. My whole body shook violently but , (fortunately?) nothing came up. I panicked thinking, oh shit, a couple weeks of this and I will lose 30 pounds as I could not imagine anything going down, even water. Undoubtedly a feeding tube and maybe that stuff will come up. It subsides a tiny bit and I get a nausea pill down, the one that has worked flawlessly up till now. No effect. I just keep walking, for at least an hour I just walk around the house and the movement helps settle things down. Later that evening I settle down and even eat a little oatmeal. This will be my first sub 2,000 calorie day in a couple weeks. The morning brings better tidings. Some sleep, not much nausea, I manage to eat more oatmeal.

Counting today 8 radiation treatments remaining. So after tomorrow I’m wondering if it will feel like the  may be in sight. Tomorrow is the third and last chemo treatment. The first one hit me pretty hard, the second one much less than expected. Despite the lower impact of the second chemo my body still cringes having a body memory of the first.What will the third be like? My body is run down  by the cumulative effects of the radiation. Only the prospect of an approaching end and grim resolution keeps me going. I ordered a book my friend Peter recommended, its ‘Runner’ by Lizzy Hawker, an ultra marathoner on a Mount Blanc race. Just getting into it, maybe something to read during the 5.5 hour chemo treatment tomorrow. Its hard to reading anything much past internet bits and pieces, brain just a bit scrambled.

The doctor had suggested to treat food as medicine and just eat on schedule regardless of the lack of appetite. My friend Bob has a better description of the process. Ever had a colonoscopy? I’m not trying to be gross, there is a lesson in here. I’ve had several. I got to drink a gallon of soapy liquid to flush out the system. The first glass isn’t  that hard, I think I can get through this. But glass after glass it just gets worse. And then I get to do more at the hospital. Well eating is like that, first bite isn’t so bad. It takes me an hour to eat a bowl of soup working as continuously as I possibly can. Getting 2,000  calories is a marathon event. 

Looked for an appropriate song, came up with a great one by the Police called ‘King of Pain’

https://www.youtube.com/watch?v=B3l0kpl5tA4

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

Birthday Part II

At Friday dance the energy is light like spring time. At one point friends dance a circle around me to Stevie Wonder’s birthday song. Then the DJ plays ‘Leya’, http://tinyurl.com/nnzaftj wonderful music, then she plays ‘I Love The Sound Of Breaking Glass’ and everyone gets quite animated, I must not be the only person that resonates with this energy. http://tinyurl.com/pe2l7qa The final song is ‘You Are Safe’ by Vanessa Forbes. If a fellow could marry a voice this lady would have a thousand suitors. And it is my song for the day, hope you enjoy it!http://tinyurl.com/nos6bhs

Happy Unbirthday To Me

Today is officially my birthday, turning 65. But I am not celebrating it today. I am saving that for a future date when I can celebrate being alive and more vital. And I will be celebrating many unbirthdays then as well.  I wish everyone an unbirthday! https://www.youtube.com/watch?v=RdsZT7WKjW8

I am in better shape this day than I thought I would be a week ago when the chemo began, my body invaded by strange substances. The radiation is only now getting irritating  but far less than I am told is coming. Sort of a sweet spot and I am going to enjoy it as much as I can.

I remember ages past to about 1959 in 4th grade when I looked at a calendar and wondered how the world would look in 2000, I would be 50 then, an incomprehensible number. Anything higher went actually unimagined. It has been a good 65 years and, except for the current cancer dance, life has only gotten better. 

Susan and I plan to drop in on our Friday night dance group. I  probably will not  dance much but its a time to play with friends all in costumes. Let the body and mind imagine new spaces. Some time back, before Mr C, I had planned to have a party as part of this gathering . Right now I am happy to be here at all.  

My song for today? Somewhere Over The Rainbow Izzy’s version: http://tinyurl.com/qhbj2zc

‘And I say to myself, what a wonderful world’

It Don't Come Easy

Monday night I have enough energy to at least dance a bit at our Monday night dance session. Old friends and comfortable place, wonderful music. I Have my exercise heart monitor on and get exactly zero fitness minutes but it feels so good to just move my body around, dance by myself, with Susan and with friends. My balance is just about gone, cannot spin. I get an email from a friend with info on a DVD called Crazy, Sexy Cancer, we order it from Netflix. I understand it focuses on eating well. Good idea in general, too much junk food. Meanwhile I am more worried about eating more now and eating problems I am likely to encounter in the weeks ahead.

All night I didn’t sleep well not sure if it is from the exertion, eating too much, too late or the wrong things. I am still trying to bulk up when I can so I had  ice cream when I got home. 

On Wednesday there is a small change in schedule. In addition to the rad treatment I get to meet the radiation MD, again. I have my list of questions. Any change to treatment plan? No. What do we know now that we did not know a week ago? Nothing. The Dr advises that these are the ‘good days’. And then goes into how hard weeks 5, 6, 7 & the following two recovery weeks are likely to be. Mouth, taste & smell destroyed. Lots of pain in the throat. Still have to eat when it is uninteresting or worse. Will probably get mouth sores and a list of other problems that will have to be addressed. His descriptions sound right out of Dante’s Inferno and then he smiles and says ….I’m going to be fine. The guy could have a second career as an Army recruiter. 

The songs during the rad treatment were again appropriate. ‘Yesterday' by you know who; ‘all my troubles seems so far away’. And later ‘It Don’t Come Easy’ ; ‘got to pay your dues if you wanna sing the blues’. Here I thought I had paid my dues and I learn they have not sent the bill out yet.  What will my songs be like in a few weeks?

A Night At The Opry

The weekend brings some recovery. Too tired to dance on Friday. On Saturday I have enough energy to walk around the farmers market and pick up some healthy food. We do a bit more shopping and I rest while Susan visits her mom. In the evening we meet good friends for a small dinner and go to the local Sierra Madre Playhouse which is running a Patsy Cline show. I also run into some lodge brothers & families there too. Remarkably well done show. 27 songs with small acts connecting her story. Professional, entertaining and even gets me absorbed enough to cheer me up. And thats with all the SAD C&W songs, ‘Crazy’, She’s Got You’ , ‘I Fall To Pieces’, Leaving’ On Your Mind”; come on, no happy music in there? Yet the raw emotions suck me in. Even now over years and music styles. Music is music and the only thing that would have been better was to have an open area to dance in, and the energy to move.

Sometimes a sad song hits the spot:

Crazy by Patsy Cline 

http://tinyurl.com/kq5ucrc

Three Down, Thirty Two To Go

Feeling wimpy most of the day, just waves running thru my body, 15 min nauseous, 15 minutes flu like, 15 min ‘caffeined’ (maybe the steroids?) and 15 minutes quite normal. I can visualize the chemo war raging within. Still not a bad day, I eat meals and can still taste things, I know this will be an issue later. I was feeling pretty grim, so many sessions ahead with information that these will take a heavier toll on my body. And the first two sessions were long, 20+ minutes in the tube, I keep track of time by counting the number of songs, one day its 7 and another 9 so I figure that they are all about 3 minutes long. But today its short, only 3 songs and it turns out this will be the norm for 4 days a week with a longer session required to assure alignment, yea! That makes it a lot easer to control my concerns about not swallowing and messing up the procedure. 

Now two days off! It will be interesting to see if my energy evens out or stays in constant flux. The problem is that I am hesitant to go out or be active as I cannot sustain much activity.

Song for today? Its I’m So Glad I’m Standing Here Today, the mellow acoustic version: http://tinyurl.com/q5s6jps

The News Today

In The News Today:

* Joe Biden decides not to run for President

* S&P 500 is down slightly

* Cubs are 0-3 Vs the NY Mets

* Frank completes his first chemo and radiation treatments

For some reason the last one really gets my attention. And, fortunately, my odds are much better than the Cubs.

The chemo went well 5+ hours, only passing moments of nausea but was advised that it can get worse later on and radiation has its own nausea issues. I’m a bit dizzy, wired on steroids and it is a two hour wait for the radiation treatment. 

The radiation tech asks what kind of music I want, since I am in darkness for some time they can pipe in music to keep me comfortable. I asked about EDM but he didn’t know what it is and its entirely the opposite of the kind of music for laying still. So I say the Beatles, no problem, he has a Beatles Pandora station. Well the station must intersperse other music of that era as I get into place and Hear the Rolling Stones doing You Can’t Always Get What You Want, http://tinyurl.com/oz5awtj

Somehow they couldn’t have picked a better song.

The radiation session is only about an hour including the setup and plenty of advice  from the rad tech to KEEP EATING, in 2+ weeks food will look and taste awful. Should I shave my beard? No problem, he says, the treatments will take care of that for me. I am bolted in place, the mask cranked down even harder, still hard to breathe and keep my throat clear. More alignment X-rays are taken and then they run the treatment, they said I was in about 20 minutes, I can’t call it a timeless experience, it seemed too long for that. It seems so long to to get to this point and so much ahead, the song of the moment is Crosby Still & Nash 'Long Time Gone'

http://tinyurl.com/nuf2zju

 I love the line "and you know, the darkest hour is always, just before the dawn".

Thankful

This may be my longest and most incoherent post ever, hope it rewards sloging through. As I about to go to my first 5 hour chemo and 2 hour radiation session I am reflecting on expressing, ‘for what I am about to receive let me be thankful’. 

This expression has had a long history with me, sometimes in my life it fits better than other times. One spiritual practice I do is an annual 3 day retreat at Mt Baldy Zen Center called an Enlightenment Intensive, it is something of a western Zen practice (although nondenominational) where participants  work on ‘questions’ (koans) like Who Am I?, What Is Life? What is Another? and a few others. These are done in dyads, sitting, walking, eating, sleeping, all the time 24/7. It is a hard practice but I find it very effective in clearing out the ‘Juicy Fruit’ commercials and major noise from my consciousness. The questions never quite get answered but they do get ‘resolved’ with increased consciousness and compassion. 

So in 1982 I am doing my second one , working on the question 'What is life?' and get into a huge mental paradox. I have an ‘insight’ that I have never fully communicated with another person in my life, ever. Now in this process the instruction is to fully communicate insights to the dyad partner or leader. How can I ‘fully’ communicate that I cannot communicate? So a soft voice inside asks me, ‘so whats the problem? I have lived 30+ years of a fairly successful life, what did I want to say anyway? And then I am overwhelmed, there is something I REALLY want to say and it is simply; THANK YOU! That is actually all I want to communicate to anyone anytime, all the rest is commentary. I am alive, on fire and everywhere I look I see the gift that life is. Everything, the flowers, the weeds, pretty houses and broken glass. Its existence, all existence is a miracle, The Hebrew name Nathan comes to mind, I understand that it means ‘gift of God’ and I expect to see it everywhere, on ants, dirt, people, everything is a gift. And as this goes on an old memory wells up, stuck somewhere deeply in my mind, of an old black and white movie, just a bit of it, set probably in the 1600s a British sailing ship is fighting with several Spanish ships. The British ship is small and faster and through near miraculous seamanship got off several salvos before the inevitable happens, they are side to side with the Spanish ship and will get a broadside. Now the movie, the script, has the UK captain saying “For what we are about to receive, let us be thankful”. And this is stuck somewhere in my memory as I could not process it. Really, why not curse the enemy or encourage your fighters to take two for every one we lose, but not in any way can the word ‘thankful’ fit in this event. But now I see it, when everything given us is a miracle, everything is a gift. Nothing is left out.

And a song that expresses some of the wonder: Thank You by Alanins Morissette
https://dl.dropboxusercontent.com/u/62504573/01%20Thank%20You.m4a

Medical Marijuana

I never thought this would be my most boring blog entry, but it all just flows as clinical information gathering. Maybe actually using medical marijuana (MM) will be artful or insightful but my current engagement with acquiring it it is practical and even mechanical.

Based on recommendations of friends and advice from other cancer colleagues I am going to engage with MM. Online readings and friends advice indicate I should focus more on the CBD part of the plant (the non psychoactive part) than the THC psychoactive part. I visit a local ‘marijuana doctor’, a real MD who really does go over my current health, my planned treatments and how to engage with MM. Folks who want to get high go for high, 10:1 or all THC content. Online guides to MM suggest a 1:1 CBD to THC ratio. The doctor suggests starting at a 2:1 CBD to THC ratio. And she suggests only getting products that are tested and marked for their properties. Have no idea how other doctors can be in their MM referrals but this one is a pretty serious alternative medical practicer, an actual MD, gives real advice and is there to answer questions and deal with side effects if necessary. The office looks like a real medical office and the patients look very normal. I tell my younger son about this and he laughs and says, ‘well then, its nothing like the places in Hollywood’ without explaining how he would know that. So that was step one,  I have my referral, next I will visit supply places to pick up some ‘product’. 

I join a local MM co-op. An unmarked building with a guarded entry. I have to make an appointment in advance with MD referral details before I can even get in to look at the place. The waiting room is quite sterile but on time. I meet the advisor who goes over my case and their products. Am I familiar with marijuana? Does 30 years ago count? Well, its changed a bit he says. The place looks like a candy store for many, I suppose this is just normal in Colorado and a few other places but surprising in the next town over from me. I don’t want to smoke anything, tongue/throat issues dictate that. But they have various oils with different strengths and CBD to THC proportions. I pick out a 2:1 spray and a 7:1 oil. The advisor goes over good ways to start with low amounts and see how effective the MM is and any side effects. 

Being comfortable scientific experimentation and with numbers I start a spread sheet with time, product, dose, reaction time, duration and other notes. 

So what is the great, exciting newest report? The stuff (highly technical medical term) does work, sort of. At my low initial doses there is almost no identifiable psych effects, it takes the edge off the pain in my neck/face and it does help me sleep, and large amounts of ice cream disappear from my freezer. 

Theme song for this episode? How about Jefferson Airplane’s White Rabbit 

http://tinyurl.com/pkhmx2j

Although this glorifies the psych effect I am grateful for any relief I can get. A better song would probably be ’ With A Little Help From My Friends  http://tinyurl.com/qft4gql

Lose Yourself To Dance

A nice Monday, not much going on for me, jaw pain is still manageable with acetaminophen without hydrocodone. Susan is busy with her Met Opera activities, probably keeping her sane. In the evening we head over for our Monday night dance session ( http://www.imjam.net ). And its wonderful, just what I need, a chance to let go, dance alone, dance together, all summed up in the song Lose Yourself To Dance: https://www.youtube.com/watch?v=NF-kLy44Hls

And I listen to a youtube posting from a friend which reminds me why I dance with these people and am lucky to have Susan in my life: 

‘set your life on fire, seek those who fan the flame’— Rumi 

Life Is Beautiful At The Ballet

Saturday is very busy. I go to Zumba in the morning, see some friends and move for 45 minutes, I have enough energy for a bit more but I don’t want to sweat the radiation markings off and 43 minutes of 145 BPM exercise is not a bad start to the day. I visit the local farmers market and get some fruit but also some poppyseed pastries that are made at home. The vendor is Mexican, he says the baker is French but these taste perfectly like the Polish ones I grew up with. 

In the afternoon we go to a house party/silent auction to raise money to resettle a Syrian family through our church. We bid on some things we don’t need but I do get some Beats headphones which should come in handy listing to my iPod during the 5 hour chemo sessions. And Susan wins a massage in our house, I’m in.

Then the ‘big’ dance event. Now, I almost titled todays post ‘Dance Cretan’  for my lack of awareness. I am not big on ballet but we got season tickets to a dance series in downtown LA. I am more looking forward to the Hubbard Dance Company and others on the list, tonights ballet was just part of the package.  The company is Russian and I figure they must be good, the Russians are good at ballet. So, bear with me, I am not familiar with the Marlinsky Ballet, I had heard of the Kirov. I remember in the early 80s going to see the movie Backstage At The Kirov, a movie about the dance company in St. Petersburg, the best in the world, better than the Bolshi and any Western company. Started in 1740 as the Imperial Russian Ballet.  It was so good and you could only see it in Russia as the Soviets would not let them tour to avoid defections to the West. But I have not followed ballet much so was surprised to discover that this IS the Kirov, just under a new post Soviet name and obviously they now go on tour. The ballet is Cinderella.  The music was written by Prokofiev and the orchestra is the best in the world at playing his music. Someone who can really write about dance could describe the flow of the dance, the delicate and powerful moments but it is simply flawless.  The bodies are perfect, they make it look so smooth and easy and can spin in and out of other dance movements. And they dance together like contact dance even when not touching or even seeing each other. I plan to incorporate their dance moves into my dancing—in my next life.

A Day And Night of Art and Music

What a day. our good friends Bob & Bya come over for lunch, we share the Giordano’s pizza , they bring a raspberry tort desert cake, part of the ‘bulk up Frank’ conspiracy. Then we go to the movies and see The Martian, really great movie. I try to flow with the story rather than deconstruct the technical details they stretch a lot. So much is spot on and, of course, its a great story with great acting. Then we visit Susan’s Mom who is in hospice care. Her condition is about the same bedridden and not much there mentally. But she smiles and eats a bit, she is well cared for and not in pain. Our visit cuts into our Friday dance time but we catch up with Bob & Bya and head out to catch a bit of Art Night in Pasadena. This is a big event with 21 locations hosting art, music or other entertainment, last time they had 28,000 visitors, it looks busier this time. We skip the major art institutions (Norton Simon, Artcenter School of Design and many more) and focus more on music and dance. At city hall there is a cool jazz band and videos of lions projected around the building. One surprise is a fellow under a tree playing what looks like a home made 2 stringed instrument. Wonderful resonance and it reminds me a bit of Scott Huckabay or Bagavan Das in the sound space created but this is danceable music and I send Susan & our friends on so I can dance and spin as the spirit moves. And I dance until I am sweated up and start to worry as I do not want to lose the x-ray alignment spot if I get too wet. I learn the musicians name is Robert S Hilton ( https://www.youtube.com/watch?v=QAI3s3-4BHw ) he makes his own instruments and plays a unique sound that really works for me. Then we visit two more sites with bands and art displays, We walk down to the Lineage Dance Company studio and hear a good band and watch wonderful dance performances done to live music. There is something special about dancing to live music. Our last visit is to the Armory Center with several art displays, a scent at project and a great local band Nightjacket (https://www.youtube.com/watch?v=Ivt0I-8S4Bg ) Susan & I dance on and on. 

Other than not Dancing With Mr C I can’t imagine a better day.

Practice Day

This morning I had my teeth deep cleaned at my dentist. A lot of good advice and sympathy there. I will be seeing them frequently, teeth cleanings every three months will be part of my new life routine. And the afternoon was spent getting fitted and a ‘practice’ for the radiation treatments. A mesh mask is formed to my face, I wear a stent in my mouth, total lock down. They do a dye CT scan and I get a spot or mark on my chest I am to keep at all costs.The nurse gives me a handful of bandages to put on top to make sure the spot is protected. It is the alignment key for the radiation. I suppose it would be claustrophobic to be sent into a scan tube if you could see but I effectively have a bag over my head so it really doesn’t matter if there is a surface a few inches above my head or if I were outside under the stars.  

And it was tricky breathing, just getting a smooth air flow. Staying calm helped but I am feeling a lot of frustration, I can understand how rockers and rebels just want to break something.

http://tinyurl.com/pe2l7qa

The Best Pizza In The World

Just like arguments about the best wine in Napa or the best coffee in Seattle/SF you can into serious trouble in Chicago arguing about  the best pizza, and that means only in Chicago; NYC and even Italy don’t register. I love Giordano’s, Susan likes Edwardo’s, my brother likes Lou Malanti’s. And Uno’s, Doue’s, Gino’s & many others are contenders. But I like Giordano’s, even drove miles to get it when visiting Orlando Florida. So what arrives today but a dry ice chiller box with Gioradano’s pizza.  The pizza is from our older son Aaron. What a wonderful way to bulk up.

And it makes me remember my home town (and the Cubs made the play offs!)

Come on sing along,  My Kind of Town: http://tinyurl.com/nw556zg

UCLA Again

Yesterday, Tuesday, we made the trek to UCLA again. We had arranged a ‘favorable’ time slot of 11AM thinking it would help with traffic. Despite leaving 1.5 hrs before the appointment we are just about on time and we were doing 70+ MPH for over half the 30 miles so driving around the UCLA area is just miserable. And we check alternate navigation routes and follow the best routes. I was thinking that if I needed a third visit I would just get a local hotel room to make life easier.

I pick up the two appliances, the tooth guard and the radiation stent, which needed more fitting. Nice Dr. but again pretty depressing; first she smiles and says “you’ll be fine” and then reminds me, based on the max radiation treatment, of the non recovery of parts of the mouth and the tooth care protocols I will be following for the rest of my life.  I guess by “you’ll be fine” she means not dead as opposed to vibrant health. 

I made the Masonic Lodge meeting last night. Nice friends who are concerned about me. I leave a bit early to go home and take a pain pill. I will not be in regular attendance for some time and they understand that. Many offers of help, fortunately I have the logistics pretty well thought out but its nice to know there are folks who will help if I need it.

Just not feeling great, my jaw/neck/side of my head ache. I have been on acetaminophen 24/7 for a few months now so either the pressure is increasing or the medication is becoming less effective. I have a stronger medication but am trying to avoid going down that route. And the medical communications are just not cheery.  

A friend sends a youtube dance link, it does cheer me up a bit, maybe a new dance step I can learn someday:

http://tinyurl.com/oseeq2t

Dance Home

We finally make it back to our Monday night dance group, its called  IM JAM, meaning ‘improvisational’ or sometimes ‘conscious’ or 5 Rhythms. If Zumba is dance and exercise then this is dance and meditation. We are welcomed by the DJ and our many dance friends. Songs come and go, some sweet, some pounding. I love that dance here is a way to both let go and to connect. On one pulsing beat I almost throw out my shoulder trying to throw out the cancer within. And I get caught up in the dance, just being present. And I dance a lot with Susan. And then I hear ‘I’m So Glad I’m Standing Here Today’  and I want to soar but my feet feel stuck in mud, I sit sobbing while many hands touch and hold me. I feel frail, more sad than glad but at home. 

On the first Mondays of the month many of the group gather at the local ale house to socialize. While we explore each other in dance If we didn’t take this social opportunity we might not know anything about some dancers, maybe not even their names. And we would not have the community that has emerged from the dance floor.The dancers are just as interesting off the floor as on it. Vast age ranges from children through, I think, 80+. And there are different dance styles and abilities. Our oldest member, Irv, says we all do our own steps to the same music. And I have the mental model of singing happy birthday. Its not like I can’t hear that one person has a particularly good voice (is that my uncle in the back with a scratchy voice?) but its all being there singing together that makes the birthday celebration.