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I have been given a new diagnosis, which both shocks and saddens me. I received this diagnosis from my wife. I suffer IBHS, or Irritating Butt Head Syndrome. When I inquired as to how long this condition has existed, she stated the underlying symptoms have been there for years, but only now have the symptoms become intolerable. On the up-side, it appears other people suffer the consequence of the disease and not me, I just bear the burden of the symptoms. Which as it turns out are easily managed with gentle reminders of my condition from my loving wife.

If you fear you too suffer this incurable, yet treatable disease, just ask your wife, but do yourself a favor, don’t ask for a second opinion. The line gets kind of long.

If you are female, do not fear that you have this dreaded disease, as apparently you are immune and any symptoms you might suffer are apparently sympathetic side effects of your husband’s IBHS. If your husband does in fact have IBHS, and only you can tell for sure, be gentle with him in both divulging the diagnosis and managing the symptoms.

A final note to sufferers of IBHS, send flowers often – it does not always help, but you need all the help you can get.

Live long and prosper!

(P.S. This post is Sally approved!)

During my often daily visits to some colon cancer forums, I have seen frequent references to being a member of “the club” or “the tribe.”  I like the thought of being part of something bigger than myself.  It helps me to know others are having the same issues and struggles.

The fact that the tribe is virtual does not seem to make much difference to the members.  We provide each other with encouragement, advice, prayers and a frame of reference for what we are going through.  The tribe is not made up of just cancer patients, but cancer patients, previous patients that are NED (no evidence of disease), caregivers, spouses, siblings, relatives and friends.  There are even regional and local tribes, support groups, that anyone can join.

My local support group consists of a few close friends and family that help me deal with the day-to-day aspects of dealing with cancer.  And that has been great, but what it lacks is theme music to pull us together.  I am thinking drum music.  Something loud and earthy, Native American, Celtic, military or Caribbean perhaps.  If anyone has some favorite drum music, drop me a line and let me know what it is.  In the meantime, I am getting my loin cloth ready or perhaps a kilt, just in case someone’s suggestion requires a response!

It seemed kind of anti-climatic, the last chemo.  When the nurse came to remove the pump I was ecstatic, but mostly for being able to shower.  The effects of the chemo where still very real.  Even now I suffer from the effects of one of my treatments that ended weeks ago.  My oncologist, God bless him (no really), says it could take twelve to eighteen months for the effects to go away, or they may be permanent.  I hope not.  The sensitivity to cold, tingling and pain in fingers and toes and loss of balance are a bit much.  I am told by some that I appear drunk when I walk.  Which causes me to reflect o the possibility of going out for a pint for lunch from time to time.  There are after all, a few bars within walking distance from my house.  My fear of course would be that they would observe my approach and refuse to serve me, citing fears of over-consumption.

Well, that is as much humor I can manage, given my current circumstance.  I have a brief recovery (a month or two), the reversal of my ostemy, a bit more recovery from that and then life can begin to move on.  Unemployment has run out for Sally, mine will soon, but we have my retirement funds to live off while we decide what we do next.  For you praying types, pray that we might figure out what next is pretty quick.  We have no clue.

Given today is my fiftieth birthday, I have had cause to reflex and I might say I am happy for the life I have lived, even the part with cancer.  God willing I will be around for a bit more and very soon look forward to seeing many family members and friends, some of whom I have not seen in ages.  I have such fond memories of growing up.  Hopefully I will find out soon what I want to be when I do grow up, not that I feel particularly old, but I feel time might run out and the decision will be made for me.  I might end up as a programmer or something like that instead of a fireman or an airplane pilot.  I think I would make an excellent garbage man, hanging onto the back of the truck, the envy of all who see me work!

The Hundred Acre Wood will never be the same again…

Two days ago a life changing event occurred right in our own home!  Guess what it was?  We got a new toilet!!!  Perhaps to you maybe this would be nothing, but this is no ordinary toilet.  This is an American Standard, one gallon flush, oblong bowl, high boy model!  Having spent the months since July 2, 2009, the day I came home from the hospital, with a low, round bowl toilet that flushed about 100 gallons each flush, I can tell you this truly is life changing.

This miracle of modern science came about because some friends – Steve and Mary Ann – bought and paid for a new one.  I remember a conversation with Steve where he asked something like, “What was the most difficult transition you had to go through having an ostomy?”  Well, that had but one answer that did not involve lengthy talks about bags of poo; the most difficult part of having to deal with an ostomy is round toilets.  They suck.  No really, they are horrible.  The extra couple of inches denied in a round toilet makes ostomy life ridiculously complicated.  NOW I know why the term “throne” came to be associated with toilets.  I can assure you this did not come about from someone sitting on one of those round jobs, let me tell you.  It came about the moment the creator of the first oblong toilet bowl sat down on his new creation.

Today, I thank God and Steve and Mary Ann for this awesome gift.  I am just sad to say it is not an experience I feel I can share with them, but perhaps heartfelt gratitude will give them some measure of the joy the new throne brings me.

Okay – so I don’t get the push by our government for the current vision of health care reform – reform, as viewed by the Senate Finance Committee, the latest committee to throw a “plan” out there.  On the surface, the taxes to fund this reform look to be coming from the health care industry (pharmaceuticals and medical supply companies), but when they leave the country for more hospitable climes, the government (read you and me – via taxes) will be subsidizing the shortfall.

As for government estimate of the cost of these programs – when has the federal government ever estimated, even remotely, close to the actual costs?  Never.

I, like everyone else, have concerns over the cost and availability of decent medical care.  But do I want another trillion or two added to our national debt, a debt my children and grandchildren will inherit to fund this reform?  I think not – our government has done quite enough to burden our future generations, thank you very much.

The size of our government bureaucracy prohibits anything like efficiency.  Perhaps the Senate Finance Committee should start there with health care reform.

WARNING – The following post contains information about bags of poo and bodily functions.  It is not my fault if you continue reading.  Nuff said…

So here is the thing.  I have been obsessive about keeping my stoma clean of poo.  The problem is its current environment is a bag full of the stuff.  My obsession with keeping it absolutely clean has had some consequences, leaking being one of them.  Stoma appliances (poo bag for you non-medical types) are not meant to be fussed with overly much.  You just empty them, clean them up a bit and then reseal the bag using the velcro seal at the bottom, at least my type.  Messing with the bag too much stresses the appliance, for which the manufacturer did not think to make allowances.  If they had, the things would be as big as a house, made of metal and certified by NASA.  Second it all takes time and you can’t even enjoy the reading material as you are handling a bag of poo.

Then I had an epiphany in the middle of one of my more obsessive moments. The small intestine is regularly, in fact constantly, full of poo.  A little poo on the part currently sticking out of my body is not going to hurt it. Giving up that obsession means less time handling a bag of poo, and more time for other obsessions in my life.  Win, win.

One last thing – the winner of the “How do you lubricate an ostomy bag?” competition goes to Steve Duncan from Desmoines, Iowa, who wins a free colectomy and iliostomy courtesy of the Handy Man’s Special, Colo-rectal Surgical Team in Pascagoula, MS.  Thanks to all who contributed entries and congratulation to Steve for his winning entry: “10w-30 works for the car why not for the bag?”

It is September already and not much has been going on.  Well, that is a big fat lie.  I have started chemo again, I had a 250cc fluid buildup drained from my abdomen and I lost my job.  But other than that every thing is just honky dory.

So what the heck is honky dory even mean?  Well since I could find no humor in my medical life at the moment, I decided to give the web a shot at cracking the mystery.  It turns out, as reported by www.urbandictionary.com, the mystery is not so deep – bummer.

Originated by post WW II US Sailors on liberty in Yokosuka, Japan. The strip right outside the main gate to the US Naval Base was called (and still is) Honcho Dori (means book district street in Japanese). Times were wild and there was no better sailor port in the world at the time. This was bastardized to Honky Dory by the sailors and it came to mean if you came from Honky Dory then everything had to be good or ‘honky dory’.

Well, now that that mystery has been solved, I have not much to say, except this, and you can quote me on this – If you ever have a medical situation that involves more than one doctor or tests, buy yourself and iPod Touch.  Mine has saved my butt several times now.  I keep all my appointments on it and even have pictures of my tumors and MRI on it.  I went for the fluid drain and the nurse said that there was a problem, they never received the data from the lab.  I gave her my iPod, a quick overview of looking at pictures on the iPod and sent her to show the doctor who required the information.  The nurse practically danced back into the room!  We continued on with the procedure, which involved several large needles lots of syringes and bags to hold them.  Prior to my drainage procedure, I showed the MRI pics to both my surgeon and oncologist (it was a a busy week – again – thank the Lord for my iPod Touch).  Both doctors used words like “too cool” and “wow” and “I gotta gitt me one o’ those.”  Okay, I fabricated the last quote, but you get the idea.  It was just one more thing to prove once again, it is good to be a geek.

One last thing – does anyone have any tips for lubricating an ostomy bag for easy emptying?  I hate it when it gets all gunked up, such a mess!  I know they have bag lubrication liquid I can buy, but it is expensive and now that I don’t have a job, I suspect money will get tight eventually.  Someone suggested dish soap – anyone recommend a brand?  I know Palmolive is gentle on your hands, but I wan to keep those clear of the contents of the bag.

P.S. I am still working on my “life clutter” project – almost done, then I will post some pics!

Having recently undergone surgery for colon cancer, I was reminded of things told to me by doctors that did not quite mesh with the reality I experienced.  Here are just a few.

Concerning vasectomy:

You are going to feel s slight burn – translation: you are about to feel like napalm has ignited in your crotch

Slight tug – translation: this is going to feel like I am trying to pull your teeth out through your scrotum

Concerning shots:

Small prick – translation: in all your days you will never again feel this much pain from something so small

You will get a small bruise from the injection – translation: this medication dosage is so large it will tear your butt cheek so badly you will not be able to sit on that side for three days.

slight burn – translation: again with the napalm

Concerning procedures:

You will feel lke you have been run over by a truck the day after surgery – translation: for days you will feel as though huge dump trucks are rolling over you 24/7

Sign here for permission to biopsy and dispose of anything we take out – translation: while we don’t intend for it to happen, accidents do occur and this lets us destroy the evidence.

This will not hurt a bit – translation: initiating massive pain response in five, four, three, two, one…

Even with these obvious dissimilarities between what was said and the experience, there are two things told to me that ring true, and I hold on to these truths and thank the doctors who said them.

Concerning vasectomy:

Ice is going to be your best friend – translation: Ice is going to be your very best and dearest friend

Concerning colon cancer surgery:

We are going to help you beat this cancer – translation: we are going to remove your whole colon and the cancer will no longer be in your body – rest easy.

Much like in the hospital, one day blurs into another and into another.  I have now been home three days and have even spent some effort and productivity on work.  I spend most of my time focusing on pain management (the drugs are really not very good), improving mobility and my diet.  I am on what is termed a Modified Low Residue Diet, which includes things like canned vegetables, no shells, peels, seeds or whole parts of anything – nothing fresh or wholesome.  The perfect combo for recovering from colon removal.

Still I am happy to be home and not in the hospital.  I know I can recover here faster than there.  I have access to the whole house and moving about even has a purpose, even if that purpose is rather self-serving at the moment.

The many many visitors I had while in the hospital made that painful transition so much more endurable.  Thank you all so much.  It would be shameful if I did not mention the support I received from my ever present, gentle, caring and loving wife, Sally.  Without her support my will to even try to get better would have flailed me constantly.  You can not begin to understand what she has had to do and endure on my behalf, and given the opportunity would have taken it upon herself to spare me the cost – remind you of anyone?  And of course, Willie, my pillar of strength – sometimes literally.  Constantly at the side or foot of my bed able to manage feats no mere nurse would ever be able to manage and without so much as breaking a sweat and saving me HUGE amounts of pain.  For those of you who do not know Willie, if you have seen the movie Crocodil Dundee, and remember the character Donk.  Well, that pretty much sums him, up – a big hulking brute of a man, but with the gifts of mercy and compassion and able to do quite a bit more than wack a few heads.

I have in my head more to say, some serious, some anecdotal, but I am tired now and need a painkiller and a nap…perhaps later.

Some research has indicated that the consumption of sugar may increase colon cancer risk; other studies have determined there is no link between sugar and colon cancer.  While one of these is true and the other not (and don’t ask me which is which), the facts are not important here.  What is importnant is that my wife, Sally, thinks there is a link.

I cannot reject the idea that eating a healthy diet all the time, but especially after being diagnosed with cancer, is a good idea.  It is quite another to join lunacy and declare war against sugar and its evils.  I submit the following affidavit as evidence.

On or about May 1st, 2009, after reading about a POSSIBLE link between cancer and sugar, my wife threw out a package of recently opened Oreo Double Stuffs with two rows of cookies left!

Is this something someone in complete control of their faculties would do?  The sugar/cancer connection thing is insane!  It makes people do unreasonable things, like a cult, cult of the sugar cancer connection!  How can something, which appears to be a theory, gain so much traction?

And it does not stop there. Normally sane people have offered all kinds of sagely advice on how to resist or beat cancer.  Now some suggestions are more common sense, others have the backing of the medical field or first hand accounts, while others are just insane.  Please research the topic before you forward me one of these.

I tried all the reasonable ones, even the one where you lick a monkey’s butt for a week.  I still have cancer so I am keeping my date with the surgeon tomorrow.  Good night for now.  Don’t let the bed bugs bite.  The bites itch like crazy and can get infected.