Get Away/Here Comes The Sun

Things continue to develop slowly but in the right direction. I am no longer taking pain pills or freezing my mouth withl liidocaine to be able to eat. Both holes I had in my mouth are healed and my tongue is less sensitive to acids and spices.Some taste has returned, I can eat a wider range of foods some of which actually taste good. 

Fitness wise I have a ways to go, but I have walked around the Rose Bowl (3 miles) a few times, did part of Zumba and dance classes. I feel tired but a generally ‘good’ tired.

One great indicator that things are getting better is that Susan & I have scheduled our first get away. She and I have both dreamed of getting away’ and as I start to have some energy and increase range in my diet we thought about where to go. We thought about San Diego or San Francisco but both places would call for an activist approach and focus on food. Since my energy is problematic and I still am not very interested in food we decided on another way entirely. We are going to the desert, to Anzo Borrego for three nights. There is an interesting motel we saw when we visited the town a few years back, this motel besides having rooms has Airstream Trailers for rent. This looks like a great solution. We can cook for ourselves if we want, go out hiking and 4 wheeling and come back for a nap whenever we want. 

We stop in Old Town Temecula, charming place. Susan visits a knitting shop there she remembered from an earlier trip, this shop actually had wool from local sheep with a picture of each sheep the batch of wool came from.

At our campground in Borrego Springs we rented an Airstream Trailer. So we have our own space and can cook food if we want.

We go on two ‘real’ hikes, one to a palm canyon oasis and another explore wind caves. Both are uphill slogs for me. I pace myself but this is a real trail and I am sweating from the effort. It takes me four days to recover from these two hikes but it is a good tired. 

Things are getting better. Not a two steps forward one back, more like the occasional half step forward. Random, slow but always going in the right direction.

A friend of mine from college days sent me a CD of Richie Havens, a different mix of his music and I love it. The theme song for me right now is the wonderful sound of Richie Havens singing Here Comes The Sun. Its not bright and sunny yt but I see the sun peeking out on the horizon, and I say "Its al right".

http://tinyurl.com/ze8jfxb

Half Zumba

Finally, after more than two months I bring myself back to my Zumba class. Kim, the teacher and the regulars are happy to see me and say how great I look. Looks like ‘thin is in’. There is no faster way to lose 25 pounds but I wouldn’t recommend what I have been through. My energy is way below Zumba level. I take up a place in the back and watch all the energetic bodies launching themselves into routines. I said half Zumba but I am actually below a quarter Zumba, I only move around for half the class sitting out some of the songs and at a much lowered energy level. Susan is moving in front of me, dancing and getting all her fitness points. Yet there is a value in just being there. We leave and I am tired but a good tired. Its going to take a long time to get back in shape but its great to have activities that call me to participate. So much better than my food recovery which is slow, limited and while I can eat a few more things, food in general is still of no interest to me and I have to eat by the clock. 

One of the classic Zumba pieces, I do this once at home and I am exhausted, someday,,,,

http://tinyurl.com/hlw6jxm

How I Will Know When I Am Healed

I have posted less in this recovery phase as the changes are so slow.  I know of at least two more posts I look forward to making in the months ahead. One will be 2+ months from now when I have a PET scan which will confirm that I am free of cancer in my body. And the other will be, when I am  healed. Some day I will know because I will launch myself into a piece of music, I will jump, spin, flap and fly and maybe drool a little but will be the music without separation. I assume, although a different sound might creep in, that the music will come from Didge-Na-Gig, Haana or Scott Huckabay. I find it interesting that I encountered all this music at Burning Man festivals. Like most children of the 60’s I was surrounded by music. My earliest music exposure was probably my Dad playing a concertina in a polka band.  I can remember the songs of the Hit Parade from the 50’s and all the sounds that followed in the 60’, 70’, 80’s up to current times. But the music at Burning Man had that remarkable effect of totally shifting time and place, contact with the musician and with others listening or dancing. A space opens where there is just pulsing potential and aliveness. This healing could occur in dance class, on a beach with Susan, or anywhere, I trust it will happen. When it calls, calls me into being, I will be there on fire.

Let me introduce these songs, trusting you will have a good experience:

Didge-na-gig is a ‘special song’ that sometimes plays in my head, it is my soundtrack to EDM/electronic type dance music, it pulses with life. It has a history with Susan and I but when I hear it  it has no history or future, only present. We first heard it at Burning Man in 2007, Susan found it at a camp playing trance dance music and she later use it used it for our slideshow soundtrack for that event. It never left us.  I had to track down the source group which proved difficult. even though this was the modern era of electronic information I searched and found that Global Seventh Wave (Nigel Shaw & Carolyn Hillyer) rather than being Australian aborigines are Brits living in Dartmouth moor playing mostly traditional acoustic folk music. (Maybe Didge-na-gig came from another part of their music timeline.) Their song is not available on iTunes, any other streaming or download site and not even youtube! I ordered a CD and a week later was holding music I still can not get out of my head. They have several other songs that I love. I do not see that they have any concerts in the US which means I will have to add a trip to the UK to hear them live. Most people have a favorite music sound, it can be jazz, C&W, folk, rock or many other choices. For me, my ideal sound is electronic with a didgeridoo  and a good female voice. Global Seventh and Jaya Lakshmi/Lost At Last go to that place.. 

When I hear Didge-na-gig  I HAVE to move. I remember once dancing till I was nearly exhausted and the DJ played this song. And as I am pulled into its orb a little voice goes off in the back of my head, saying ‘you might die’, and this is not just crazy paranoia. I actually had a heart condition that later required two A-fib heart ablation procedures to resolve. But I pick myself up and launch into the music, seriously, If I’m going to worry about dying I will never be alive. And if I’m going to go I’ll go dancing. Dancing with that edge brings a vitality that others may experience sky diving or other risky activities, being fully alive in the moment. I cannot post a link to the whole song, there is no youtube and dropbox will not produce a public link but this is their web site which plays samples and I trust you will get a sense of the music.

http://tinyurl.com/jkayp73

I posted about Haana early in this blog, I will repost some of that here:

A little of its history in my life: So there we were, Susan & I at Burning Man 2015, not being very good Burners we slept (or tried to) most of the night. This means we missed the extensive after midnight activities including dance & circus acts. The trade off for this energy cycle is that we were up mornings, usually at dawn, the playa was relatively empty and cool. We could see all the art pieces without lines and in beautiful morning light. And there we were at the Temple when a huge dragon shaped art car pulls up with a loud sound system. Playing on top is an amazing woman with a violin. The red headed lady had a wireless pickup and came down, people danced and whirled around her, an intoxicating sound, I danced until I dropped. I asked about the car/music/musician, simply ‘who are they’ and got an answer that was Haana, from NYC and a particular camp. The next day I was out again at dawn to dance with the dragon and wild redhead lady. The second song on my Dancing With Mr C Playlist is therefore Leya by Haana. Dance till you drop.

song: http://tinyurl.com/ybd2mdew

Then there is Scott Huckabay. Heard him in 2007  and a couple times after that. Not so much dance music but space opening sounds. He has a remarkable history. He was an adult injured in a motor vehicle accident and in recovery was given a guitar which he could not play, he would use it more as a percussion instrument until he could hold it properly, and when he did learn to play he used with different tunings. He uses a wireless mike freeing him to move and I have seen him spinning for 5 and 10 minutes while he plays. If you go to the youtube link below make sure to see the second track where you can see how he looks live. Being there is so powerful, I hope you can pick up some of that energy off the recordings.

http://tinyurl.com/ybnbhv3b

Let's Dance

And on Monday I return to dance. It is mostly wonderful. Friends, hugs, body movement. Two minor downsides, I do not move freely, other dancers  launch themselves into routines that I used to be able to do, now I watch and move slowly around. And the session turns into a remembrance of David Bowie, http://tinyurl.com/y7q8awj5  the DJ works a number of his songs into the music flow. I dance for about an hour. Have my heart monitor on and I get some good exercise in as well as the movement benefits of dance. I am tired a lot on Tuesday but its a good tired. Eating is getting a bit better. I still have one hole in my mouth and a sensitive tongue but I am starting to be able to taste some things and I now can eat a few more soups and Chinese food that doesn’t have spices. This makes it a bit easier on Susan as I can pick up something so she doesn’t have to cook all the time. 

On Wednesday Susan and I meet our friends Nancy and John for my first outing around the Rose Bowl. This is a three mile walk. I used to wear a weight vest and carry hand weights and I could not get more that a couple minutes of ‘fitness’ on my exercise heart monitor. Now, unladen, I toddled around and the heart monitor indicates a real workout. Afterwards I am tired but a good tired. Fitness is slowly returning. Improvements are so slow in coming, at least the direction is a good one.

Happy New Year/May The Force Be With You

Susan and I look forward to a wonderful 2016. 2015 has been pretty grim but I may yet come to hold it differently. The whole cancer treatment has been one version of hell. But I know from experience that the context of life can shift in way that may put a more positive understanding of things. Many years ago  I was working for a crazy boss, really right out of the Caine Mutiny situation. I was working in a small Navy office in London, two people had nervous breakdowns and I would probably be next. Fate shined, the perpetrator cracked first and actually went running down the street naked and was promptly deported. The office had a going away party for him and didn’t invite him. It was a real celebration. But the mental damage took quite a while to recover. Fast forward a few years and I was now in my long career NASA office at JPL. All employees were getting furloughed a couple weeks without pay and there was talk of staff cutbacks, no ones job was secure. I really just didn’t worry about it. The other office folks had not survived what I did. So I came to appreciate how the London experience has ‘hardened’ me. Maybe, with luck and time, I will have a better way to hold the cancer ordeal.

New Years Eve we had been invited to a party from our dance group. They do great parties but this year we just get to see the Facebook pictures. We are there in spirit but the flesh is weak. Just not enough energy. On New Years Day we watch the Rose Parade on TV despite being able to see the floats from the back window of our house. Just not enough energy. On Monday the 4th, I get to feel a bit more normal. Susan and I go to the mall with our friends, we see Star Wars. Great afternoon and all I have to do is sit there but it expends all my energy for the day and I miss Monday night dance. Dance wimp. My idea is to have part of each day feel like a ‘normal’ day. On Tuesday I am out expending energy in the rain securing the house from a rain storm. Had to dig a small trench and get leaves out of the gutter. I was pushed to my limit, totally out of breath almost falling over and I miss the Tuesday night Lodge meeting I had hoped to attend. 

Now for some good news. On Thursday the 7th I get my first post treatment medical examination. This is just a visual scope down the nose through the throat and other physical evaluations. The word is that I am doing as well as possible at this stage. That I can taste anything is a good sign. I will return for a physical in two months and if things look right they will schedule a PET scan to see if there are any cancer cells remaining anywhere in my body. I am told, very clearly, that this is a long process; weeks, months and even years before taste returns to whatever level it will be. And dry mouth will get better only slowly over years. My dreams of February/March/April on a beach in Hawaii, carefree, recede. But they are only on hold, not cancelled, because 2016 is going to be a good year. May The Force Be with All Of Us.

And a song for Susan who has been my bridge throughout this whole undertaking.

https://www.youtube.com/watch?v=H_a46WJ1viA

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.