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Betty inspects Sensible Shoes' quilt
Betty (aka Elizabeth Bastet) inspects SensibleShoes' quilt

Our friend, paradise50, is facing an arduous treatment for throat cancer and, understandably, he is feeling pretty low about it.  Let's lift him up with a community quilt full of loving and supportive messages.  Our words can help him get through this tough treatment so that he can fully heal.  Paradise50 needs his people right now -- and they are us!

Sensible Shoes' quilt
SensibleShoes' quilt

Paradise50 explains the situation:

My diagnosis came as a shock.  I will share with you my situation because it is information that I believe is vitally important.  Before I go on, I must say Michele Bachmann is fucking insane and totally wrong.  You will see why on earth I just wrote that.

Well, before I was diagnosed  I  found out about THREE men since this summer with what I have...tonsillar squamous cell carcinoma caused by HPV (human papillomavirus).  HPV has long been associated with cervical cancer.  Both my ENT and the Radiation Oncologist told me that HPV is now the most common cause of throat cancer, causing 80% of throat cancers in men.  As the oncologist I met with last week stated, "This seems to be an epidemic."  Strange to call a cancer an epidemic, since epidemics are caused by pathogens. But this specific cancer IS caused by a pathogen...the human papillomavirus.

Though you've heard plenty about women developing cervical cancer from HPV, you probably haven't heard that this is rapidly becoming more common in men. My surgeon said this could have been happening all along, but they only recently started testing for HPV 16 in throat cancers. It is now commonly starting to appear in men in their mid-50s - as yet, they don't know why. It peaks in men statistically at age 60.  I never even knew I had the HPV virus.  We all know there is a vaccine for HPV marketed to be given to girls by age 12.  WELL, boys before age 12 should clearly also get this vaccine, since it is now suddenly and dramatically obvious men also get cancer...including tonsillar squamous cell carcinoma from HPV. Teens should get this vaccine before they are exposed to any sexual acts. Get them young...the vaccine works best in a naive subject.  Preventing HPV from taking root prevents these cancers.

I had no symptoms at all until a lymph node blew up in the right side of my neck.  I had a needle biopsy that showed it to be atypical squamous cell carcinoma.  Two days ago I had a PET and CT scan. It showed up exactly and only where it had been seen visually, a small patch on the right side of my lingual tonsil (the ones on the back side of the tongue)...and in the lymph node that blew up.  I have not one spec of cancer anywhere else in my body (hey, free colon, and prostate, kidneys, liver, pancreas, stomach and lung cancer scan...whoo hoo!)  This cancer is not caused by life style choices or behaviors like smoking, drinking or not exercising or eating crappy diets. The HPV virus is sexually transmitted, and no one knows why a percentage of people with it eventually develop cancer, how long it takes for it to develop or what triggers it.  No one can tell with certainty how long it is latent in the body.  BUT, something is definitely going on in that regard as it is just now starting to show up in men in their mid-50's...and "epidemically."  Why?  Who knows?

So, the "good" news is there is a 99% chance I'll be completely cured of this cancer (they can never say 100% because nothing is ever 100% with few exceptions.  One exception I can think of currently is the GOP Presidential hopefuls are cartoon characters).  The "bad" news is to do so with total certainty, I will have to have surgery (Thursday, Jan 26th) to remove the lymph node and remove as much of the primary cancer site that can be done reasonably.  Since that site is the tonsillar tissue at the base of my tongue, you can't cut it all out along with a sizable chunk of healthy tissue around it or else I would be left with serious problems in speaking and swallowing.  Then 2-3 weeks later, chemotherapy and radiation. The radiation given is "the most radiation ever given for any cancer."  Radiation therapy is the therapy of choice for squamous cell carcinoma along with excising the primary and any secondary (metastasis) sites.  I'll receive daily radiation for seven weeks.  Chemotherapy hasn't been determined yet and is "new" as part of treatment of this type of cancer.  As the oncologist said, it is still all experimental.  They haven't determined exactly what combination of chemo-to-radiation is best, NOR specifically what type of chemo to give.  They use one of two types of chemo now.

So, I am literally in the beta testing guinea pig group.  But honestly, all cancer treatment is always in the beta testing group, as any oncologist will tell you.  In my case, for the specific cancer I have, the only thing known for sure is that if you just go medieval--nuke the living shit out of it --that works.

This next part is not for the squeamish and contains medical details you might not want to read. Skip down to where I tell you it's safe to read again.

There are "complications" as well.  First my saliva glands will stop making saliva for months...recovery is very slow and never the same again.  Second, I might lose my hearing in my right ear (the side where the lymph node is swollen).  Third my thyroid gland will likely be compromised.  Fourth, my teeth may even just crumble...one guy I know ended up needing a bunch of crowns.  All lot of that has to do with not only due to what radiation does directly to the teeth, but saliva is the primary antibacterial agent that keeps our teeth and gums alive.  I'll have to "brush" my teeth 6-8 times a day...EXCEPT, I won't be able to brush them...the pain to the guns would be unbearable.  So they will give me some kind of gel or stuff to swab on them.  Plus, I'll be fitted with a molded thingy for my teeth...top and bottom...that will then be filled with some Fluoride stuff that I put into those molds and place on my teeth a few times each week to keep them as tough as possible.  Frankly, I believe this is going to be fairly worthless.  How much Fluoride can seep into the teeth during this process?  Not much.  Fifth, I will lose the ability to swallow...at the very minimum it will be badly compromised.   It may come back, but some folks never get complete swallowing ability back.  Sixth, I'll lose my voice, but they assure me that will return.  Seventh they will radiate me from my brain stem down to the apices of both lungs, which will scar.  I am an avid athletic type.  I love to ride my bike like crazy too.  I don't know what I'll be able to do again in that regard, but physiologically speaking, you don't have alveolar in the apices of the lung, so that won't compromise oxygen exchange...just some ability to inflate my lungs as much as before.

At about the second or third week the pain becomes, in the oncologist's words, "brutal."  It tops out the fourth week and doesn't get any worse after that.  That means, obviously, that though the damage to my throat will be increasing, the ability of nerve receptors will have reached their top limit of responding to the continued assault.  I will be on hourly morphine from that point on.  For a month or so after all this radiation, the pain will still be there just as intensely.  So I'm looking at a grand total of 8-9 weeks of pain that will require hourly morphine to deal with (reminds me of a Rolling Stone song...Sister Morphine).

Then there is the weight loss.  If a person is fat, they are in good shape for all of this.  If you are like me...less than 10% body fat and just in top fitness, you're kinda fucked.  The least amount of body weight you lose is 10% to 20% the oncologist told me...the most is around 33%.  Talking with people who've gone through this, the least amount anyone has lost is 20%.  For fit people, the percentage of weight loss is the most...and it is all muscle, since there are no fat stores.  I am 5 foot 7 inches and 158 pounds.  At best I'll end up around 125...but that is being hopeful.  I'll probably lose more weight than that (likely get down to 115 pounds even...who knows).  I'm told "the first three months will be hell...at the 6-8 month mark, my energy should begin to come back" (yes, this regime is so brutal you are listless for months after it is all over).  Then, a year from now it should all be a "memory."  I may never regain all the weight I lost, and what weight I do eventually get back might take years.  The one lean, fit and muscle-type guy I know that went through with this lost 31% of his mass (went from 195 down to 135).  Five years letter he's gotten back to 170 pounds...but that's been the limit.  So, he lost 13% of his total mass.  But as I well know that is because he lost muscle, which can never come back.

Since I will not be able to swallow there is only one way to survive this...I'll have a feeding tube punched into my stomach from the outside and then be fed by way of syringes of  "guck" being pushed in.

Squamous cell carcinoma is a "medium-slow" cancer, but you MUST totally get rid of it before it spreads to a new tissue.

OK-- It's Safe to Come Back and Read Now

Well, there it is...telling this whole hellish story is, for some reason, a bit helpful for me.  I don't know why.

I'm scared.  I live a super healthy life and am in tip-top physical shape.  The whole process will end what my life has been.  I hope one day to be able to return to being able to work.  This ages you too, I'm told.

Another thing about this, is it is so "new" that they are still not sure what the right protocol will eventually be...so they are just doing overkill at this point...BUT I must get rid of it totally right now  to have a 99% cure rate.

paradise50 and smileycreek
paradise50 and his wife, smileycreek (photo by Julie Gulden)

Smileycreek explains why this quilt is so important to the two of them:

paradise50 was blown away and flummoxed to hear he would be considered for a quilt.  He has so many hard months ahead of him and reading the messages will mean so much.

To put this in context, it is never advisable to be close social friends with your patients.....and everyone is our patient.  I don't know if I can explain this adequately, but I will just ask you to accept this truth.  I'm an introvert and have my sister mimi2three, p50 and a close lifetime friend, and with the freedom my friendships on dkos bring me that's all I need.  p50's reaction to Netroots Nation and SF kossacks and J Town is to be blown away at what it's like to have so many friends, to have so many like-minded people in his life.  He NEEDS more people in his life in a way I don't. To have those indelible signatures on a quilt would put it in such physical tangible form that it would be incredibly powerful.

Every night since November when this enlarged lymph node appeared the two of us do a healing meditation together where I put my hands on his neck and we listen to meditation music and spend the next half hour focusing on healing.  I ask for help in whatever form it may flow through me.  Last night, because of p50 finally being willing to go public with this, I was able to add in the thoughts and energies of every kossack who has expressed well wishes.  If I've met them in person I picture their face.  If I haven't, I picture their avatar.  If they have no avatar I imagine how they feel to me.  Last night's meditation was far more powerful than any other for my being able to keep bringing each kossack into it, interspersed of course with other friends and family.  The more people I can draw in to each meditation, the more powerful it gets, and the less of my own Qi I expend. This is one way I can take care of myself as caregiver.  I am using ALL of you to pull healing energy through me, and the more of you there are, the more of a conduit I can be.  This is in no way theoretical; this is energetically real. I want to state very clearly how important the support of every single person here is.

The quilt will make it tangible for p50 during all the hours in the months ahead when I will be at work and he will be alone or with other caring souls. I can't imagine a better investment in his spirit right now than this quilt.  Because believe me, it is his spirit that is in danger of going under right now, and healing that is far important to me than healing his body right now.  With his spirit strong he can come through this.  Without it his life will be forever ruined.  

In the past I've joked that I hope I'm never on the receiving end of a Daily Kos quilt. Now to see one coming to paradise50, well, I humbly thank you. I never could have imagined how much it would mean.

Sensible Shoes' quilt, showing backing
SensibleShoes' quilt, showing the backing -- deep purple!

Share your message in the comments below and I will transcribe it in archival ink on muslin.  It will be heat-set for permanence and integrated into a colorful quilt for paradise50.  He'll be able to hold onto it when things are tough, rest under it while he is healing, and savor your loving words anytime he needs a lift.  I am hopeful that we can get all the quilt messages tonight -- we'll need a minimum of forty-four.

Scott Olsen's quilt, backing
Scott Olsen's quilt, detail

It takes time and material to make these quilts -- if you can help by donating toward these, we are most appreciative.  Here is a PayPal link - or message me if you prefer to send a check and need an address.  Suggested donation is $10/message -- but if you can help cover messages for others, it would be great.  We don't want anyone to think they cannot participate because they can't afford to donate.  That being said, all are encouraged to leave a message, donation or no!

princesspat's quilt, showing backing
princesspat's quilt, detail

These are the community quilts we have made to date:

othniel (cellulitis and ensuing complications)
exmearden (cancer of heart and lung, RIP)
MsSpentyouth (brain tumor)
Moe99 (lung cancer)
Michelle Caudle (ovarian cancer, RIP)
BFSkinner (lupus)
Kitsap River (long wait for kidney donor that ended 2/18/11)
Frederick Clarkson (blood clots)
Dreaming of Better Days (lymphoma)
one bite at a time (lost house and belongings to fire)
Timroff (cellulitis)
Sol Fed Joe (multiple cancers and health problems)
Brubs (AIDS, immune reconstitution syndrome)
rserven (gall bladder infection with dangerous complications)
grndrush (brain tumor, RIP)
ImpeachKingBushII (needs liver transplant)
andsarahtoo (lupus)
Frank Cocozzelli (muscular dystrophy)
luvsathoroughbred (breast cancer)
Predictor (stroke and HIV)
Austex54 (caretaker to othniel)
Theodore Olbermann, RIP
cskendrick (antibiotic resistant infection)
Keith Olbermann (caregiver to father)
Juan (cancer)
Ana (a young horse belonging to Juan, hit by truck)
MA Liberal’s mother (Alzheimer’s)
Charles CurtisStanley (caretaker to Kitsap River)
Lorikeet (cervical cancer)
Dr. Lori (metastatic cancer)
ulookarmless (cancer, heart condition, stroke)
riverlover (caregiver to husband suffering from liver failure, now widowed)
Melody Townsel (caregiver to dying father, now deceased)
dadanation (AIDS)
Dr. William F. Harrison (leukemia, RIP)
Larry Bailey (sudden loss of partner to heart attack)
ramara (adopted son with fetal alcohol syndrome)
Noor B (herniated disk from car accident)
Louisiana 1976 (fibromyalgia, severe arthritis, depression)
stumpy (MS, stroke, RIP)
bleeding heart's niece (cancer, RIP)
escapee (failure of corneal surgery)
SarahLee (lymphoma, Lyme Disease)
Bustergirl (ovarian cancer)
mimi's niece (cancer)
ZenTrainer (breast cancer)
Miss Blue (severe injury to shoulder, anxiety over coverage for surgery)
Granny Doc (bladder cancer, RIP)
mango (heart attack)
nudger (ovarian cancer, RIP)
DaNang65 (heart condition)
Lt. Choi (exhaustion)
Nurse Kelley (spinal stenosis)
Ben Masel (lung cancer, RIP)
Otterary Scribe (caregiver, grieving grandfather, grieving widower)
Aji (autoimmune diseases incl. fibromyalgia, inflammatory arthritis, & Chronic Epstein-Barr Virus Syndrome)
JaxDem (suddenly widowed)
DavidW (AIDS and other undiagnosed illness)
Jester the Marine (facing amputation of leg)
peregrine kate (endometrial cancer)
mimi (grief due to family illnesses)
alliedoc (endometrial cancer)
labwitchy (diffuse scleroderma)
Daily Kos (celebrating community)
belinda ridgewood (sudden loss of her mother)
princesspat (blood clots, deep vein thrombosis)
Scott Olsen (severe head injury)
SensibleShoes (caring for sister with brain cancer)

Granny Doc's quilt
Granny Doc's quilt -- we miss her so

We are close to finishing quilts for Joanna and cany.  Patriot Daily News Clearinghouse's quilt is underway, as is indiemcemopants' quilt.

ZenTrainer's quilt
ZenTrainer's quilt

These quilts are planned:

Plutonium Page (pulmonary embolisms, pulmonary infarction)
MsGrin (life long heart problems requiring multiple surgeries)
UnaSpensor (Lyme disease)
MA Liberal (caretaker to her mother who has dementia)
paradox (cyclical vomiting syndrome, PTSD, depression)
woodtick (caretaker to mother who has Alzheimer's)
Ellinorianne (rheumatoid arthritis and fibromyalgia)

Photobucket
Goldie inspects Nurse Kelley's quilt

PAYPAL LINK FOR PARADISE50'S QUILT - THANK YOU!

Photobucket
Boots says, "Thank you for supporting community quilts!"

Namaste.  Please note, paradise50 and smileycreek are very beloved members of the SFKossacks and as such, navajo is co-hosting tonight in order to ensure that we get all the needed messages!  

Originally posted to Sara R on Sun Jan 22, 2012 at 04:05 PM PST.

Also republished by Community Quilt Project, DKOMA, Street Prophets , Monday Night Cancer Club, and J Town.

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