Cancer statics often vary depending which chemo is used and for how long. The stats for the different stages depends greatly on the people staging the cancer. There are so many factors to consider. What needs to be considered when deciding on and accepting treatment is what is the respond to that treatment and if it is accomplishing the desired affect.

After dealing with cancer for a little more than a year and reading thousands and thousands of posts on forums and many web sites about cancer, I have come to the conclusion that there are many approaches to treating the disease and people have chosen chemo, something more holistic like diet change, herbal medicines, life style fitness changes, all of these or nothing at all. There have been people on the forums I follow that have had success in dealing with cancer regardless of which treatments they chose and there are some that did not. Some friends have died and yet there are many that defy the odds, or the statistics found so easily on the web.

What I have noticed is that regardless of the treatments selected or the outcome, the journey is what seems to mostly define the quality of life often despite the physical condition of the patient. A man I know from one forum, Terry G (from the UK) physically is a mess, but has been an inspiration to just about everyone who has had the pleasure of meeting him – even if only online. If you read even a few of his posts and I think you would easily understand what I am talking about.

My advise, given even my limited experience with cancer, to anyone (patient, caregiver or friend) is become as knowledgeable as possible about the cancer.  Don’t rely solely on doctors, nurses, test results, what you read on the web or from people on forums. The decisions made and the attitude in making them will mostly likely determine his quality of life during the journey, not the treatments chosen or the outcome.

We had been once years ago with the kids and we of course planned the trip then around them.  Now it is around making Sally happy (and being done with chemo and cancer).

Just an update for the un-awares:  I have a test on Wednesday, which will determine my readiness for the ileostomy reversal which should happen early April.  My kidneys are acting up again.  I see my Kiney doctor on Tuesday.  I don’t know if I should be hoping it is the same thing as last time or not.  They drained 1.5ish liters of fluid from me last time.  If the fluid is back something will need to be done to find the cause before too long.  I can’t keep going in for surgery every two months, no matter how much I enjoy the camaraderie at the hospital.

Here is hoping I will be able to report an accident free Disney trip.  I can’t tell which is my worst fear, and accident or all the walking.  I still tire easily.

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!)

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!

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 reflect 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!

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.

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.

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?”

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 an 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 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!

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.