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.

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.

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