Barry White meets Don Corleone: Recipe for Laryngitis

This past week I attended APAP, a music and arts conference I've been attending now for 10-years. Fortunately the conference started as I got out of the shadow of chemo session #10 and I got to reconnect with my peoples and make some new friends. I love these conferences as I'm back in with my world music tribe. As the conference has concluded I have officially lost my voice and have been officially diagnosed with laryngitis. My voice has been reduced to a whisper. My throat feels like there is a five pound donut pushing the bones and nerves of my throat outwards. I cough and my adams apple explodes (read earlier posts about exploding throat). My throat is raw. I'm praying that this initiation will find me waking up one morning with the singing voice I've always dreamed of!

So, here is a recipe for laryngitis.

Sunday Night (1/3): The heat didn't work well, woke up Monday morning with a cough.

Monday - Wednesday (1/4 - 6) : It's Chemo week, treatment #10. Chemotherapy causes immune system to breakdown, cough develops minor chest cold, regular chemo side-effect of vomiting induces acid burning in throat coupled with the pressure of exploding throat.

Thursday - Monday (1/7 - 11): I'm out of the shadow of chemo. Attend APAP conference, lots and lots of conversations, attended over 25-concerts, participated in fun series of late nights at clubs and restaurants with the world music tribe. Breathing in frigid 20-degree air is like small daggers ripping my throat. What was once the burning throat metamorphosises into brittle dry throat and lungs feeling like a very dry tree. Five nights of half-sleep and exorcist like coughing epidemics permits a mere 4-5 hours of sleep a night. As the days pass I'm forced to speak slowly and deeply. Voice changes into that of Barry White meets Don Corleone from The Godfather.

Tuesday Morning (1/12): Voice reduced to a whisper. Only able to consume hot lemon and honey. Messages sent to my medical team. It's Laryngitis. New codeine-infused medicine enters my system, now I'm able to sleep for the first time in days.

Sounds pretty bad, but I'm feeling remarkably content…

Session #10 - light at the end of the tunnel

I'm slowly crawling out of the shadow of chemo session #10. On my last entry I was considering the addition of a new medication. My last two sessions #9 & #10 have been fueled with irinotecan. It's been nothing short of debilitating. I know it's been working as intense side effects from extreme vomiting to feeling heavily medicated and supremely weak all while feeling a tingling, almost sparkling colon while the chemo is doing it's work. It's been hell, but it's almost over - TWO MORE sessions to go!!! I can see the light at the end of the tunnel!

Over the first four days of chemo I'm a dreadfully weak sight. Yesterday evening (day #4), I finally got out of my house and made it to the Russian Baths where I only had the stamina for 25-minutes (I'm usually there for 2-hours). I followed the baths with a 90-minute massage which I believe helped get my blood moving again and restore some of my chi. Most everyone who sees me these days share compliments on how good I look. Internally I feel like my muscles are melting, my blood is poisoned, my mouth is medicated, and my life force is taking a beating. The hospital infuse my blood with strong dosages because of my youth and that I can rebound quickly. In their eyes I should never be hit with cancer again as the chemo has been having it's full effects. In my mind, I'm getting all future severe sicknesses out of the way now. In one month this nightmare will be over. I will most likely spend February in Florida where I will do a 3-week heavy metal liver-gall bladder flush to detoxify my blood, and spend the month in physical training to revitalize my body. It's the next chapter on this path of transformation.

flora and fauna

One of the many unpleasantries the doctors don't tell you about before beginning chemo is the length of time the chemicals remain present in your body. Friends regularly ask 'how was the last chemo session', thinking after a 4-our hospital visit and 48-hours of being connected directly to a chemo box that it's over. Simply put, it's not. The chemo keeps work as it's swimming in the blood. My time and focus in between chemo sessions is getting it out of my body. I've documents in many of my previous posts the various side-effects and the process of conquering them; and the general time it's taken me to restore my body back to full vitality (especially since the removal of the ferociously nasty oxaliplatin). Since completing chemo session 8 of 12, I took a trip to Miami with my parents to get some sun and silence. I've been on a steady in-take of green juices here, and I hired a physical trainer and been visiting the gym and ocean daily. My first day at the gym was profound. It was a stead 60-min of cardio, running, and general muscle strengthening. Within the first ten minutes of running my salavia started to generate the medicated chemo mouth. As I lifted weighths my muscels squeezed the chemo and the scent started to push through my pours. The lifting and the running really squeezed out a whole level of toxicity that neither yoga or the sweats at the Russian Baths had accomplished. I knew what my body was climaxing towards as I worked through my program with my trainer, for 2-minutes after my workout was complete I approached the first setting of flora and fauna and gave all the contents of my stomach to the earth.

Monday I return to the hospital for chemo #9. I am two thirds complete. For the final third I've been asked to add a new medication to my 'cocktail' - irinotecan. I haven't made a decision yet. I feel I've suffered enough, yet at this moment - after all the running, swimming, and lifting I feel stronger than ever. I will continue meditating on it until I reach the hospital.

Almost there.....

Round VII - crossing the midway point

It's been almost a month since my last entry. It's been an easy way to communicate to many of my friends about this ordeal as the process has found me on a self imposed exile from everyone. From being in touch with a vast network of friends, colleges, partners and prospective collaborators; my accessibility is limited to a a handful of dear ones. My beak was dipped into countless pools reaping rewards as 'fixer' or 'manager' or 'adviser' to many. This current moment in my life is the first time in well over a decade that I'm focusing on myself and waking up in the mornings thinking about my own creative projects, and not the means by which to solve the issues surrounding the creations of others. It's a significantly different reality...

Since my last entry I've crossed the midway point of chemotherapy. I do this blog for myself, for my friends, and to leave information behind for others that might have to walk down a similar path. At this moment I'm connected to my chemo, it's the middle of round seven out of the prescribed twelve. I can finally sense the finish line, it's distance is closer than ever. It's been hell to get here. The game changer was removing the platinum from my 'cocktail'. No longer am I stabbed in the jaw when I eat, no longer am I experiencing the neuropathic electrocutions, no longer is the volume of suffering turned up to eleven.... it's now somewhere around four. Every person, every body, every blood, every spirit is different in how it handles disease and the treatments created to cure/heal/prevent the shituation. I believe the suffering I experienced by the platinum gave me the endurance I have to complete the process. What remains in my world of side effects:

1) Chemo Mouth: By morning my tongue will be covered in a disgusting yellow-grey coat that alters my sense of taste and infuses my saliva with the vile taste of medication. Regular tongue scraping and mouth washing helps eradicate some of the symptoms. Last week, or the first time since this journey began I had 6-days of no-hint of chemo mouth. This is obviously due the lack of platinum, standard mouth maintenance, and a steady regular intake of red wine. (Love and respect to my friend Rene Goiffon who sent me 8-bottles of wine and some great classical music). Red wine has been a HUGE help. It helps kill the chemo mouth, and helps my blood.

2) Vitality: Anyway we look at it, chemo is poison. The reality is that this chemical is killing my immune system on a regular basis in hopes that any cancerous cells that may be lingering in my body will be killed. One thing that this does is cause serious fatigue. On Wednesday, as soon as I'm disconnected from my chemo pack I go through a routine process of squeezing it all out of my body through regular sweats at the Russian Baths, yoga, my trampoline (to stimulate the lymph nodes), massage, acupuncture, and loads of green juice.... and writing songs.

If anything is reactivating my aliveness and tasting the nectar of life is the riding spirit of writing a song, it's through music that my vitality is reborn.

Round V - Platinum

I'm now in the 5th round of chemo. It's been a while since my last entry. My blogging was postponed due to the severity of round four which by far produced the highest level of poisonous suffering this body has ever endured. It really took two weeks to get past round four. Reasons:

1) Extreme Chemo Mouth: A nasty yellow tongue lasted for two weeks forcing me to need to have something in my mouth all the time. I've had to use my tongue brush 3-4 times a day to peal off a thick yellow substance that continuously formed on my tongue. My saliva tasted metallic. I returned to eating meats as it helped strengthen me, and helped my taste buds react - but there have been no lasting effects to remove chemo mouth. Two glasses of red wine each night also helped numb my tongue and my senses, but only temporary. Citrus upset my system and caused vomiting. Ginger helps. Food has not tasted the same at all. I'm most fond of red wine these days...

2) Hi-Level Neuropathy: Imagine dental floss wrapped tightly around your hands and feet, your finger and toes with little barbed wire jagged edges. Imagine this sensation simply arising in your body because of a breeze, or wrapping around your face because of a cool wind, or touching a cold object… or simply using your hands to type of play a piano - the highest level of 'pins-and-needles' imaginable was delivered with round four.

3) Shadow of Death: This medicine makes me feel like I'm dying. It's been killing me. My life force, my prana, my energy is completely wiped out overtime I do chemo, and round four threw me over the edge.

With tears in my eyes I brought my case to my oncologist yesterday; desperate to find an alternative path to treating my condition. We reviewed the situation and concluded we remove one part of the medication - the platinum. At this moment of writing I am connected to my chemo pump, in my 32nd hour of the chemicals being dripped into my body, and for the first time since walking this path I'm able to function. I still feel ill, but I'm not bedridden. I'm sensitive to cold, but I'm not hyperneuropic. My tongue is still producing a funky substance, out the metallic taste is gone. Most important, I don't feel the shadow of death draining my life force away. I'm out of bed re-engaging with my life.

That's the report for today. Thanks for reading.

Round IV

Pictured to the left are an adoring crowd of Kaiaslh Kher fans in Dallas. The past few weeks have been an existence of extremes, one week I'm in bed, then I'm in some city with my friend and business partner Ali and our artist Kailash Kher. The tour is now over. I've made it to Los Angeles, Dallas, and this past weekend Chicago for the IIT Conference where Bill Clinton gave a keynote and Kailash and the boys were the gala event. It's been great fun having road time with a solid band of friends at memorable events.

Yesterday I completed round four of chemo. It's pulverizing. Neuropathy was kicking at it's highest level yet sending electric shocks accompanied by pins-and-needles throughout my hands and feet, nasty chemo mouth has turned my tongue yellow, and the intense nausea inspired my first oral projection, clearing all the contents of my empty stomach. I'm not joking when I share with my friends that my current life cycle revolves around a 14-day period during which I experience a week of death followed by a week of life. I really quite awful. I can't do much of anything while the chemo is in my blood beyond listening to music, watching movies and documentaries, and sleeping. I've been writing a lot of songs these days, but playing the piano while on chemo only heightens the neuropathic effects sending the electrical sensations deeper into my fingers… I now keep a hot pillow around the piano to warm my hands when I play to try and counter the effects.

The hardest part of this process over the last two treatments have been chemo mouth (clearly accented by yellow tongue). My taste-buds are extremely sensitive, nothing tastes like it normally would. My sense of smell is hyperactive and overwhelming and certain smells spin me into nauseous spell. The whole experience has really done a job at remixing my system. Yet, when the chemo has passed after a week, one would never know that I've been experiencing this hell. My vitality is restored, my mind is sharp, all my faculties are fully functioning. I'm able to do some work, see friends, spend time with my parents and family, get to the Russian Baths to sweat out the chemicals, get massage and acupuncture to further push the chemicals out, and operate on preparing my body for the next round of chemo. That's the reality. My week of life is spent squeezing the toxicity out of my body and preparing it for the following round.

That's the story for now.... this cycle will continue until mid-February. I'm am one-third down the road beating this.

[The above photo was taken before Kailash hit the stage in Chicago. And yes, I'm growing a beard.]

Round III: lightening bolts and spiritual interventions

It's been close to a week since my last entry. I write this as I'm on a plane to Dallas where I'm joining my partner Ali on our Kailash Kher & Kailasa tour. Kailash is expected to perform tomorrow at the new Dallas Cowboy Stadium to an audience of over 40,000 people as the headliner of a Diwali Festival. I know it will be worth the effort as this past week of chemo is still lingering and I need to return to this part of my life. This past week found me in bed coping with round III of chemo. Chemo brain was present, sheer exhaustion and fatigue were in full effect, nasty medicated chemo mouth is still wrapped around my tongue (it's really yucky), and of course the stabbing sensation in my jaw while eating has been a regular companion. The specific area of detonation ignited by grape or bread, pasta or green juice is called 'the condyle of the mandible', or 'the head of the jaw bone', or simply 'the temporomandibular joint'…. speaking of which, I need a joint…. Last I wrote I had resurrected my recording studio, created a dust storm and took in a little cold. The eye of the chemo tornado pulled it all together resulting in the alchemical side effect of what I will call 'exploding throat'; be it cough or sneeze, with any heavy exertion of air through my Adams Apple, the force would result in 'exploding throat', sending a message to my cerebral cortex that my voice box has shattered into a thousand piece and causing difficulty of breath. Fortunately I'm not one to panic and I'm generally very good with my breath, but the process of re-composition would generally take an average of 90-seconds. FUN!

Another chemo character to share more shades of its personality was neuropathy. If it were a cartoon character it would be personified by a friendly lightening bolt that when aggravated quickly transforms into a jagged razor sharp evil web of electricity. A week earlier our little friend was introduced to the story by my holding a cold pint of sambazon acai, it was here that it took my hand for an introductory handshake. This week I became well acquainted with my new friend in holding more lightening in my hands, pounding electricity on the piano keys, electrical jolts running through my feet, and feeling a cool breeze kiss my lips sending shocks through my mouth and up towards my nose (mother natures new way of saying 'i love you'). All that said as I type this with every keystroke a little lightening jolt nibbles on my fingertips. Sexy stuff!

I mainly spent this past week in bed coping. Monday at the hospital getting hooked to the juice, then stuck in bed in my headphones until Wednesday morning when I for the first time disconnected myself from the chemo pack, (I'll take a picture of the long needle that we unclamp from the port in my chest). My acupuncturist came over and tuned me up (forgot to mention the lower left area of my back has been enduring nasty muscle spasms all week), and then my friend Vanessa drove me to the Omega Institute where I linked with my wife on our 2-year wedding anniversary to spend time in the current of Brazilian healer 'John of God' (over a thousand people a day came to Omega for this happening). Wed - Friday were spent at Omega. I had a spiritual intervention, spent more time in bed in my headphones, collapsed in front of my friends Brett & Helema as a muscle spasm overtook me, ate like a bird, and returned home by bus on Friday to spend a little time with my father for his birthday. Now I'm on a plane… Something tells me I'm pushing myself a little too much, what do you think? I know I can handle it, I'm as strong as a lion!

To my friends that have been calling, texting, emailing and have received only silence, please excuse the reality that I had to drop out this past week, and I will be forced to drop out every other week. Between chemo, family affairs, and taking in the electrical current of John of God, this week has been all about healing… everything right now is about healing. All social and business activities are on hold. I've been so busy being sick and tired I didn't even get to enjoy the all organic au-natural herbal remedies my friends have been gifting me with. To be perfectly honest, it's a little challenging to smoke a spliff when your mom is taking care of you, your father is always around, and your wife is a hardcore raw-live-vegan-shamanic-healer. Still, as Round IV approaches I'm going to have to schedule it in like I schedule acupuncture and massage, I can explain to my family that next to the supplements of vitamin B, and C and magnesium and gold and iron that Vitamin M is also an integral part of the healing process.