All posts by zwanny63

About zwanny63

I'm a middle aged man, living with old man problems, but living like a young man! I'm a Dad, husband, retired USAF sergeant, and living the dream! I'm currently medically "retired", and I'm working hard to get back to work.

Music and Pain

This past Sunday (Father’s Day) I was a substitute singer for a friend’s band at a local pub (the normal singer and wife had just had a baby, and had to pull out of the gig).  Some fans of their band had asked them to play for their 25th Anniversary party.  It was standard “Dad Band” stuff, and I’d jammed with a couple of the guys before.  We rehearsed hard on the day before, and all seemed well under control.

How hard could it be?
Well…it turned out that I’d overdone the rehearsing the day before.  About 30 mins before leaving for the gig I “tanked”.  Just seem to lose all energy, and usually just have to take a nap to recover.  Its something I have to manage with the cancer.  A major reason I don’t take a lot of gigs.

But there was no time for a nap, so I made my way to the pub.  Surprise, I was the first one there.  Ok, so I started carrying the PA the 75 meters to the pub’s patio.  One guy came, and we set up the PA.  Drummer?  Not yet, so I started carrying over his kit.  This was not good, I was using the last of my energy units up before we even started.  (BTW, the anniversary party was a lot bigger (200 people) and really quite formal looking…damn, I was seriously under prepared).

The guy that asked me to do this still was nowhere to be found.  I was starting to get pissed off!  But, I couldn’t let rage zap my remaining energy.

I used all my new found coaching skills and knowledge to keep a positive mindset.  Surprising myself really.  I was cool.  Part of my new life sentence vs death sentence attitude.

We started off a bit ropey.  Even with experienced bands, it can take a while to sort out who is driving the tempo, eye contact, sound levels, and audience expectations.  I had already visualized this situation, and managed to lead the band through this awkwardness.

We went on to do about 30 songs over the next 3 hours.  We rocked it!  I was going for it, the crowd was dancing, the couple was dancing, people were singing along….brilliant!  We recieved comments like “you guys are better than the normal lineup!  Thank you so much, we wouldn’t have had much of a party if you wouldn’t have played”.   Plus, two more bookings were on the table.

I don’t know why, but I don’t feel tiredness or pain when playing music.  (Actually, I think I do know why.  But, like a magician I’m not sure I want to tell how the trick is done.  At least not yet!)  I do crash pretty quick after we stop, but that is ok.

I’ve wanted to write about this topic for a long time.  But, have hesitated because I’m a bit afraid I won’t do it the justice it deserves.  Warning:  this is going to be a multi-part blog post.

Well…putting this off isn’t getting us anywhere, so here goes.  It is 430am and I’ve already checked facebook, twitter, wordpress, whatsapp, email, youtube…ok, enough Mark!  Write!

Just a quick recap, I’ve been battling with Neuroendocrine cancer with liver metasis since diagnosis in 2007.  A couple major surgeries in 2008-2009, Y-90 targeted radiation therapy in 2011, and curently half way through Lu-177 PRRT this year.  Its been a roller coaster to say the least.

Pre-carcinoid syndrome in 2000, my wife had bought me a guitar after my fourth and final knee surgery to set up the next chapter of hobbies after racquetball and rugby. The goal was to be able to play rugby songs for the club, so I would still have a role to play with the lads.

(BTW, drinking and singing with the guys was probably the first indication of music’s power. You could be severely beaten up by the rugby match, but were instantly “whole” again as soon as you someone started “I Used To Work In Chicago” or “Grand Old Duke of York”.)

At the time I was working hard on my career, rebuilding and raising a family life, playing hard, and I was not taking very good care of myself physically or mentally.  I was heading towards a physical breakdown.  Overweight, out of shape, binge drinking, and addicted to nicotine (I was chewing tobacco 90% of the time I was awake).  I was setting up the “perfect storm” for serious health issues.

Before diagnosis I had several years of feeling pretty bad.  Which, I put down to my lifestyle.  I was spending hours on the toilet.  While there, I took solace and taught myself some basic chords.  The first song I taught myself was “Hang” by Matchbox20.   A song about a guy who’s woman just stops the car and kicks the guy out, because she is bored with him talking about himself and “realized she didn’t care”.  It was my mantra at the time, and I wallowed in it.  I played it over and over for months.   Literally over a thousand times.

I didn’t know it was carcinoid syndrome at the time that was sending me running to the toilet. (That is part of the problem with Carcinoid/NET cancer, it appears to be IBS or diet related.  If caught before metasis, you can take out the primary tumor and you are cured.  You just have to “suspect it before you detect it.”)

At the time, I just knew I had to get to the toilet.  (It was violent and painful and gut wrenching and really not nice).  I was running to the toilet several times a day.

In 2001, I was in my last year of active duty USAF, and for some reason I was stressing over the looming retirement speech I would give in August 2002 (a year away…come on Mark, get a grip!).  I was so stressed I developed panic attacks when public speaking.  These attacks were crippling!  I’d never experienced anything like them. Literally felt like I was suffocating.

In an effort to get a grip, I forced myself to go to an open mic.  If I could do an open mic, I’d surely be able to deliver my speech.  (Right?)

Well, I couldn’t have been less prepared.  Armed with my one song “Hang”…which, nobody else in the UK knew, I was going to come off as some pathetic dumbass who’d taught himself how to play G,C, & D on a cheap clasical guitar.  Right?  But, was I somehow wrong?  Nope, I was right…pathetic dumbass!   I was a one and done performer.  (So I thought.)

But, I had done what I set out to do.  I took my beating, and was able speak again in public. (Thank you music!) BTW, my retirement speech was epic (in my mind’s eye).  I’ll post it someday.

I also noticed that all the nerves I experienced before doing my song were quiet when I was actually performing.

I had no intention of ever doing another song in public, but one night at a dinner (and drinks) with some friends I told my open mic story.  And, thats when I met my guitarist.

End of part 1.

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Day 41, Status – and explanation to a alternative medicine expert on what I’m doing.

Here is a message I’ve sent to a friend who sent a suggestion on Essiac Tea to me.

I looked it up and, din’t think it is right for me.  

I feel really blessed to have friends looking out for me, and I’ve been wrestling with how to gracefully address advice.  

I think I’ve come up with a “compromise”.  Explain exactly what my plan is and where I think I need help.  

BTW, my friend is well versed in Reiki and diet (specifically, how to get Ph levels right).  

Hi,

Thank you for the tip on Essiac Tea. Looking at http://www.cancertutor.com/essiac/ it doesn’t look like a recommended option. I’m not new (7 years since diagnosis) and I’ve had almost my limit of radiation and surgery isn’t an option any longer.

What does the tea do?
I’m doing pretty well at the minute. Diet, exercise, visualization (be ready for the immunotherapy cure that is coming in about 4 years), and targeted radiation therapy lu-177.
My challenge at the minute is getting to my ideal weight. Where I’m genetically to be. (83KG) 
I’m shooting for 9 Nov. the end of my 182.5 mantra I’ve set up. 83Kg =182.5Lbs 182.5 days should be long enough to get there at a healthy/safe rate. Reptilian brain training as well…haha!
Also I’m training to get stronger and have more stamina to increase my resilience.
My problems at the minute seams to be uric acid. Diet, cell death, and chemo are pushing my scores up into high levels. The uric acid has caused 2 gout attacks so far. Painful! But, i wonder what the uric crystals are doing to my kidneys. I need my kidneys to stay strong (obviously) but at least functional enough to handle the (PRRT).  
I was also deficient in Vit D a little over 2 months ago.
So far, my uric acid scores in 41 days into getting serious have went from 
349 to 546 (2weeks after a rd of PRRT) to 512 (5 weeks after). I’ve met with my GP on taking Allopurinol to reduce this level. But it works by blocking enzymes that breakdown purines into uric acid. I would think this is the way the body gets rid of dead cells. Something I want (dead cancer cells).   

My Vitamin D scores have risen from <50 (deficient) to 86 a month ago(pretty good). I’m aiming for staying in the range of 70-100. 

I just reread your messages you sent me on raising my ph levels. 

I’ve cut out foods high in purine, and I’m drinking a lot of water. And, i expect the levels to all be good and balanced at the end of my 182.5 day program.  

Make any sense?

Cheers,

Mark

Day 37 – Are you f’ing kidding me?

Wasn’t planning on a blog post today.  

But, that changed when I woke up with a super short fuse, ready to fight about anything!  

Was I in a “Positive mind”?  My ass!  

I wanted to get in the car and drive an hour and a half up the A1 to Hooters Nottingham for a couple dozen chicken wings and an eyefull of boobs!

What’s the f’ing point of this “mantra” bullshit?  

Yep, it was a rough morning.  Checked the blood…7.7 (damn, “normal”… “Normal person normal”).  

Hmmm, maybe this is working?  

(Self talk “If you pull this back, get a grip….you’ll be able to go to Hooters any time”…”because you’ll be alive”). 
I said to myself, “walk the dogs”…”play some golf with Alan”…”lift some weights”… “do some cardio”…”meet with my GP about high uric acid levels, and tell him my plan”…”mow the yard”…”grill some burgers”….”and if you feel like this tomorrow we are off to Nottingham”.

Well, its bedtime.  I did all those things.  I’m feeling better.  I feel exhausted actually.  I’ve pulled back the ANT’s today. (win)  But, I wouldn’t be surprised if a trip up North is coming soon (win win)!
Anybody want to come with me?   

  

Mantra Update – Day 36, Feeling Better Still

36 days in to my 182.5 mantra and I’m feeling better still.  Very positive!  

Today is also the 1/2 way scan day (MRI and CT) to check the progress of the Lu-177 PRRT I’m having at the Wellington Hospital in London for the NET cancer I currently have.  (BTW, thanks Ronny for the “scanxiety” word.  Helped me put the scans back in perspective).

Here are some stats on my progress:

Lost about 1.82 Lbs from the last weight check at 18 days.  Right on schedule.

I ran over 20KM last week with my avg speed of 7.1 min/KM.  Down from 7.5 min/KM.

On weights, I’ve moved to the big boy dumbell rack.  Noticed it on the golf course too.

On music, we have a 8 song “soul” set laid out for the big gig in July.

Mental attitude.  Very positive!  Working on how I react instead of events.  On a happy meter, I’d say 7 out of 10.  (10 being Xmas morning as a 7 year old and 1 being informed your cancer is inoperable).

I think I’ve made an impact on at least four people in the last 18 days on getting their mindset going in the positive direction.  

Off to walk the dogs now, before the drive into London.  

Cheers!

Mark

WOD:  Enlighten

Mantra Update Day 25 – I Feel Great!  (Just kidding, its a piece about how I love playing music in my kitchen)

Day 25 of my 182.5 mantra.  Feel great!  Morning blood sugar at 6:45 was 8.2.  (I was up at 6:45?  So, I’m sure it would have neen below 8 at 0815.  Note:  between 4 & 8 is “normal person normal”.)

Ran 6K yesterday,  and started to push the pace a bit.  My goal is to run 3K splits of…wait for it…18.25 mins.  Is that clever or what?  My pace yesterday was about 21 mins.  It will happen!   (Yawn…hang in there, the music story is coming)

I’m also really enjoying lifting weights again.  Its been several years.  I’m focusing on feeling stronger with a stronger core.  (Double yawn)

My diet is in full swing!  I really seem to have it balanced right now.  You can follow me on “myfitnesspal” if you’d like specifics.  Its starting to show in the mirror and with how my clothes fit.  (Nap time?)

Blah, blah, blah….the real reason for this post is –

Last night, I had a 3 1/2 hour music session with a friend I’ve been visualizing singing with for a couple years now.  Finally, our calendars finally lined up with some spare time.

In my studio (kitchen) I had Spotify, youtube, the “Ultimate-Guitar” app, iphone, five binders full of paper “Books of Dreamz” tab, appleTV, my Martin Guitar, JamMan loop pedal, Bose L1 PA, Scottie Dog “Dexter”, kettle and tea bags, a Hungarian au pair, and a few cell phones all in sync and in top form.

 We came up with about 12 songs for a set we could have “pub ready” very soon!  Loads of stuff I’d never really played before in a bluesy and jazzy and in a “perfect pitch” way.  From KT Tunstall to MJ to Coldplay to The Commitments.
I’ll tell you what…you see a lot about diet, exercise, medical innovations, alternative medicine, meditation, etc (and they are crucial to fighting cancer)…but for me, nothing lets me escape dealing with cancer like playing music!

I guess it all started wIth carcinoid syndrome that hadn’t been diagnosed.

I was on the toilet so much I started taking a guitar with me, and taught myself how to play.  (Please don’t visualize!)

Over the next few posts I’m going to cover that time period until now. Where presently, I gig a couple times a month with my band “The Acoustic Supper Club”.  The gigs are fun, but it is the sessions where we jam on new music I really enjoy.

I think I’ve finally figured out what I can bring to the blog world.

Stay “Tuned” (pun intended)… Ok, that’s it…time to post!

Cheers!

Mark aka “Zwanny”

(Look for me at zwanny63 on these sites, and you can see my playlists)

Vitality (Great British 10K) and Vitamin D 

I’m on day 15 of my personal 182.5 challenge, and I’m certainly feeling benefits already. Feel good, thinner, think I can see a difference in my face, have’t blown a day on MyFitnessPal, have convinced Les to start, and feel good in the routine.

It has also been over a week since round 2 of PRRT Lu-177. And, this week has been a lot easier than after round 1.
My morning blood sugar results have been really good as well averaging around 8.0. The best test to see how well you are managing your diabetes is thr HbA1C test, but that can only be done every 60 days or so. I want some daily feedback. So, I take a morning glucose level before I eat anything. Visualuzing and aiming for 8 at 8am. No science really, but I’ve noticed that I feel good with that score. 4-8 being “normal”.
I’ve not cut anything out of this diet, except refined sugar and processed foods. I eat a lot of salad, I’ve started eating fruit again (blueberries, cherries, oranges), honey, real milk, eggs, and some red meat (but a lot less) but mostly white meat and fish. Plus, some potatoes, pasta, and wholegrain bread. These are good fuel foods. I’m learning that all sugars are not bad, and for me I think it is pretty important to layer the carbs and protein to stay level through the day.

Staying level helps a lot with reducing cravings.

One of my blood test scores I think I can improve is on Vit D. It only 50, which is boderline deficient. I’ve been taking a supplement, but after reading Vitamin D & Cancer Prevention and Battling Cancer I’m convinced suplements help but you really need good UVB rays from the sun to get the levels up in the 70-100 range. My next challenge to myself. Might see me at the tanning salon. From what i’ve read, 20 to 30 mins of midday sun on large areas of skin gets you the good rays (UVB) turned into Vit D and topped up to good levels after a few weeks. The few articles I’ve read indicate you can’t do it with diet or supplements alone. Makes sense to me. Overexposure to the sun (harmful UVA rays) is still bad though. Recommend you read the article linked above.

Interesting relationship between gout and Vit D as well Gout & Vit D. So, Vit D can help me in a few ways! My Uric acid score is 460, and that is a month after my first gout attack. My first Uric acid score a couple weeks ago was 438. Weird, since I’d expected it to drop with how extra healthy I’m eating. I think this may be a result of the treatment and it might be a good number (cell recovery after radiation). So, I will still limit foodsthat are high in purine, but expect this score to be much better at the 182.5 point.

Today I start training for the Vitality Great British 10K. Les and I will be running for the NET Patient Foundation.  It is 12 Jul, and have kicked off the fundraising.  Mark & Lesley Just Giving Page

I ran it last year, and Lesley ran at least as far as I did to spot me at several locations. Lately, she’s lost a bit of confidence in how strong she is, and I’m hoping this is a real boost to her as our whole family needs her strength. And, when I say “whole”, she needs it as well.

Cheers,

Mark

182.5 My New Mantra

I’m sitting in a hospital waiting for the 2d round of Lu177 PRRT for NET Cancer.  It is a £16,000 shot designed to stun the tumors around my body. 

The plan is for the octreotide laced with Lutetium (radioactive isotope) goes directly to the tumors, and kills them.  Or, at least keeps them at bay for a few years.  (Long enough for immunetherapy to be developed for the next treatment)

 I’m quite a lucky boy really!  This treatment isn’t available in the US yet, only in clinical trials. My consultant is one of the world leaders in the treatment of NET cancer.

So why 182.5?  Well, if this treatment is going to have its best chance of working I need to be in the best physical shape possible.

My ideal weight is 182.5lbs.  Aka 83KG AKA 13 stone.  Also, 182.5 is exactly half a year…so, my reptilian brain should be assured of survival after 6 months of getting there.

After 182.5 I will be able to get off metformin, be gout free, and no longer be obese.  😃