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