Off To Paradise/Good News

On Tuesday I had a visit to the ENT doctor to look at my hearing, breathing and eating. Lots of complications little and big from the cancer treatments.which caused dry mouth, some loss of hearing and  sometimes my sinuses make breathing at night difficult. But these are actually getting slightly better in that I am learning how to deal with the dry mouth, Susan has adjusted the volume of her voice and I hear her better and she says my breathing is less bad when I am sleeping. The ENT doctor said one ear is better, keep my sinuses hydrated and I may need to get checked out for sleep apnea. But she offered some really good news, she looked at the PET scan results and while she can see that the radiologist is concerned that there is some brightness and would not give a clear interpretation of the test she feels the results are really quite good. The tumor itself is gone, the lymph nodes are good and there should be no surprise that there is inflammation in the area I had a biopsy, heavy radiation and difficult swallowing for some time. Her review with her scope shows significant inflammation remains which would have to show up on a PET scan. 

So we are off to Rarotonga! Leaving in a few minutes, our son Michael is driving us to the airport. On our way! People ask why I keep wanting to go back to Rarotonga and thanks to a friend who said, “You do because it is your ‘Happy Place’!”  It’s not the big adventure trip, it is the lay back and rest trip. The look at the beautiful fish swimming, tropical drinks and amazing sunsets trip. And its a spiritual place, good for my soul.

Tap Tapu Tapu 

https://youtu.be/bKzWM0IU7Cc 

Not Definitive

The PET scan I hoped would ‘resolve’ my concerns about the cancer treatment is not definitive. While the visual examinations indicate the tumor is gone and the nearby lymph nodes are clear there is a brightness in the PET scan in the original area of the tumor. This may mean there are some residual cancer cells. Or maybe not. The area is still inflamed from the radiation treatments and this can lead to a false positive. The Dr  explained that the good side of my throat, which never had cancer cells is just as bright so he does not believe there will be a problem but cannot definitively determine I am clear right now. I need to come back in 4 or 5 months and get another PE scan to see how things are in the area. 

This is, of course, disappointing but I remember  in the early pretreatment briefings that I need to get three annual clear PET scans before the treatment would be considered fully effective and no likelihood of a reoccurrence for 20/25 years. 

While this leaves a residual wariness, it is ironically very buddhist/contemplative, forcing me to keeping the present moment. Which I will be doing this weekend. For the over 25 years I have attended an annual Enlightenment Intensive, a Zen type retreat. Its really difficult but I do it because it works. I expect it will be particularly difficult this year since I am often tired, have dry mouth and my ‘internal metronome’ seems to be off and makes breath meditation erratic. I asked my 90 year old monk friend about it and he said ‘don’t worry about it’. So its like I’m doing a retreat for the first time, so what? They never said it was easy or would get easier. EVERY year without fail, on the first day of the retreat I ask myself how did I do this to myself again? The best image I have of that initial state is the scene from the film ‘Liar, Liar’ where lawyer who must now tell the truth beats himself up:

http://tinyurl.com/hqdoroq

It really is that hard at the beginning of each retreat. And it is worth doing because by the third day the space is so wonderful I contemplate not leaving, ever. This process is so profound, it gets all the commercials out of my head, opens  my heart and has left me with transformational experiences of the nature of myself, life and others. I expect it is one of the few activities that will clear my head of my medical concerns. Powerful stuff, telling the truth. When I look across at my partner and see their divinity it makes it easier for them to see it themselves. When they see it in themselves it is easier for them to see it in me. And easier for me to see in myself. Try it. Or whatever spiritual practice works for you.

http://tinyurl.com/jxd8n8m

Really Good News/Almost There

Some really good news, the physical I had last week indicated that the tumor is gone. The doctor scheduled a PET scan for tomorrow and I liked his choice of words, not to know if the treatment was successful and not to just see if there is any cancer about but to CONFIRM that there isn’t any cancer active at this time. So his diagnosis is that it is gone and is doing the scan to confirm his judgement. And, as explained early in the process, the first PET scan suggests non recurrence for several years out if the PET scans are negative in the second and third years then the statistics show I am good for 20 to 25 years before I get hit by a bus or I am overcome by some other malady. So it will be a few days before I know the test results, then it is time for a checkered flag victory lap to a place of healing for me, see Raro below.

It is hard to believe that it is about three weeks the last radiation treatment. The immediate weeks following were a version of hell from which I slowly emerged. These last couple weeks I have started to feel almost normal. First we had a three day trip to Anza Borrego Park, my first trip out of town since September. Each day there had a little adventure, as well as, a lot of comfort. Also I have returned to Monday night dance and the occasional Zumba class. Not full speed but I am moving my body and feeling more alive. This last Monday I went to dance and really let go for a while, it felt wonderful although today has been a good deal of penance for not reeling myself in enough. Our next trip is a real road trip! We are scheduled to visit our older son and grandchildren in Placerville CA in a week.

Even better, at the end of April, Susan and I have scheduled a trip to one of my favorite places on the planet, Rarotonga, Cook Islands. This will be our fifth trip there. It is one of those fundamental questions adventurous people ask themselves when planning a trip, do you go to someplace new or someplace you have been to that was wonderful. We travel enough to new places but there are magic places we return to and Rarotonga is that for me. We discovered it by accident on our our first trip to the South Pacific. We went from Tahiti to Rarotonga to Fiji. We had some idea what Tahiti and Fiji would be like but Raro was unknown. I almost hate to let out the secret of the place. There are 8 islands that make up the Cook Islands with a population of about 16,000, 8,000 or which are on the main island of Rarotonga. It is protected by New Zealand and uses that currency but all the land is locally owned and you cannot live there without local permission. They get maybe 60,000 visitors a year mostly from New Zealand some from Australia, Canada and not much from the US. There is only one direct flight a week from the US/LA to Raro. There are no traffic signals, no chain hotels or restaurants. There is one movie theatre and the fellow who takes your ticket also serves refreshments and runs the single projector, so you get refreshments durning reel changes. Some people describe as Hawaii before WWII.

The snorkeling is great we even got dive certified on one trip although we only snorkel now. The church music is ethereal.  We never miss a chance to hear it even if we have to be up at 7:30 AM on a weekday on our vacation. The singing and dancing is remarkable. We love this place, it is remote, exotic and totally comfortable. Healing to the inner soul which is looking for a simpler way of life.

A couple dances:

http://tinyurl.com/j5jgye3

 this is the song in my heart from Raro

Salvation

http://tinyurl.com/yb28qc4c

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.