“NEVER, NEVER, NEVER GIVE UP..."

The blog address came from an earlier title I tried for this blog. Didn’t work. The new title is a better reflection of me – and if you’re here, I hope it’s a reflection of you…http://breastcancerreaper.blogspot.com/search/label/Introductions

I’m struggling with a subject today because it seems the passion has leaked away.

When first we joined battle, we were all about “beating breast cancer”. That fire seems to have gone out. It’s not that we don’t want the cancer beast to die; it’s not that we don’t moment-by-moment pray that it will be DONE, it’s just that it’s not as intense as it first was.

While I watch her get the chemicals dripped or pumped into her, it seems like the fight goes OUT. I know I talked about this earlier, but as chemo has worn on, the effects accumulate rather than diminish. In my head, it seems like she should be bouncing back FASTER as the cancer cells die and the regular cells take over again.

Not the case. It’s not like no one told us this would happen. Plenty of people said that the effects were cumulative.

I don’t remember anyone saying that the whole thing would gray over in the constant dimness of repetition. People aren’t calling to cheer us on. Blog entries aren’t designed to bring people to their feet, cheering. What was once a World War I attitude has fallen into a Vietnam attitude or a Civil War attitude.

How do I fight against that? How do I remain the powerful second-in-command?

My wife and I watched THE KING’S SPEECH the night after her chemo appointment. In it, King George VI was surrounded by people whose job it was to support him, but at just the wrong moment, Prime Minister Baldwin resigned in 1937 not long after King Edward VIII abdicated but before Hitler invaded Poland. Neville Chamberlain took over though after three years acceded to Winston Churchill in 1940. Churchill truly carried England through World War II and became a world hero as well.

How does this apply to me? My wife is Queen. I am Prime Minister. I can quit as Baldwin did when the going got tough. I can be a weenie like Chamberlain. Or I can become a Churchill and not only stand beside my Queen, but do so with dignity and honor. No one remembers the words of Baldwin or Chamberlain (who is remembered as saying, “I believe it is peace for our time . . . peace with honour” even as Germany sought to crush Europe into its Aryan mold.

Churchill’s words had the power to stir the hearts of humanity. His words found a place in history: “But for everyone, surely, what we have gone through in this period -- I am addressing myself to the School -- surely from this period of ten months, this is the lesson: Never give in. Never give in. Never, never, never, never -- in nothing, great or small, large or petty -- never give in, except to convictions of honour and good sense. Never yield to force. Never yield to the apparently overwhelming might of the enemy."

I choose now to become a Churchill to my wife’s Queen.

Image: http://faculty.virginia.edu/setear/courses/howweget/photos/church.jpg

The Real Poop

The blog address came from an earlier title I tried for this blog. Didn’t work. The new title is a better reflection of me – and if you’re here, I hope it’s a reflection of you…http://breastcancerreaper.blogspot.com/search/label/Introductions

OK – so my wife, who reads these blog entries said that I didn’t tell the truth in one of my entries where I said she was doing good. She wasn’t. I don’t know which entry is was, but I apologize for saying she was doing fine and she wasn’t.

So that brings me to this entry.

It’s a new wrinkle in the Life With A Cancer Patient – The Fever.

Sunday night, after several days of elevated temperatures, she finally decided that she should call the nurse line. She reported the temperature, they said they’d call back. The cancer nurse called back and said we should get to the Emergency Room. So, full of trepidation we went.

I’m sure everyone has, at some point in their lives, been to an ER late at night on a weekend. The place is FULL of mishap victims, drug abusers, people running weird temperatures or feeling ways they’ve never felt before. Crying children – whether injured or tired of waiting for hours while harried ER nurses, guards, physician’s assistants and orderlies try and serve everyone in impossible situations.

Once we made it through the first “strainer” of the standard TPR, insurance forms and debit-carding, we waited. In a freezing cold waiting room. Along with dozens of others. Once they called us and wheeled my wife into a “private” ER treatment room (next door to a young adult who had been to a concert and someone jumped on the back of his leg – breaking it and requiring him to be put into something called conscious sedation while they put pins in his leg and put the leg in traction, but I digress…)

An intern/doctor (who reminded me of Dougie Howser, MD (https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhysK9je7HjOlgiUAKsZ0qpGCzdBSGxtw0dF8gHNcW-xbKwMFu5RbmZ0birxGnDrLuglO7aFq03FpgzuhUgaL7gmalCuAOW-Vj9ku8pf_FI3X_VtBeLOtFGiZA-W1o4UFibeD3_-zmODi_m/s1600/doogie_howser.jpg ) came to talk to my wife. Then a nurse came in and I started to be afraid. Looking through the list of drugs my wife was using and received in her cancer treatment, the nurse had NO IDEA WHAT SOME OF THEM WERE.

The preadolescent intern-pretty-close-to-an-MD-but-not-quite and another nurse came to the conclusion that my wife had a urinary tract infection. As it turns out, they made that diagnosis NOT based on a urinalysis but…I’m not sure. My question is how can anyone make an accurate diagnosis from incomplete knowledge (aka: ignorance)?

Her cancer doctor (who she went to see a few days later and could find no record of the urine sample they’d taken away ever being analyzed…and IT’S THE SAME HOSPITAL with the same computer that keeps records…) looked at her, did a WBC and a urinalysis and said, “You don’t have a UTI.” Of course, this led to another series of tests – one of which required drawing blood from her port, then blood from her arm to compare the results to see if there was an infection in the port. (My daughter and I about passed out when my wife walked out from the infusion lab with FIVE FREAKIN’ GAUZE PIECES TAPED ON HER LEFT ARM! She looked like someone had been practicing their phlebotomy skills on her and got an “F” on the test!

So now she’s home, no fever but her armpit is sore…

To tell the truth, some days it’s one damn thing after another. This is one of those days…

Image: http://www.gigaweb.com/files/productsimages/BS_C/med_800540.jpg

Thank You For Your…um…Support?

The blog address came from an earlier title I tried for this blog. Didn’t work. The new title is a better reflection of me – and if you’re here, I hope it’s a reflection of you…http://breastcancerreaper.blogspot.com/search/label/Introductions As to the lateness of the post? Yesterday we celebrated the marriage of my son and daughter-in-law at a reception that had been delayed for a year. So the wedding was Labor Day last year, the reception yesterday. Busy, busy, busy...

One of the things I’ve noticed in this ordeal is that huge expectations have been laid on caregivers.

We are to support our women. The doctors, nurses, families and well, everyone, expects it.

Of COURSE I do that with all my strength, heart and spirit! I love my wife! I am pulling for her, cheering for her, weeping with her, listening to her. I am as there as I can be.

Others cast their support as well from intimate family and friends to people she hasn’t heard from in years, all the way to ones with whom she parted ways less-than-happily. People who follow and comment on her Caringbridge blog (http://www.caringbridge.org/visit/lizstewart1) are legion.

My question then – and still is – where’s my support?

Of course people support me! Right? OK, to be honest, I was sorta expecting a bit more. Maybe a couple of pats on the back, a chuck under the chin and few words of, “Wow, must be tough for ya, eh?”

That was my expectation. The reality is more like an avoidance reaction. For example, one of the men at school has a wife who is going through breast cancer. They have younger children, so a greater burden has fallen on him than on me with one kid out of the house living his own life and then other starting her third year of college.

But I sorta expected a bit more camaraderie when he told me about it through his email response to my announcement. Instead, we avoid each other and never say a word about breast cancer. Some of the women at school ask about my wife. Lots of them. Many of them. Our church supports her and people ask about her all the time.

But the people I get to thank for their support?

Crickets chirping in the auditorium as I speak into the microphone, “Thank you for your support.”

Image: http://www.outlandishjosh.com/files/Bartles%20and%20James%20Parrot.jpg

Living on a Roller Coaster

The blog address came from an earlier title I tried for this blog. Didn’t work. The new title is a better reflection of me – and if you’re here, I hope it’s a reflection of you… http://breastcancerreaper.blogspot.com/search/label/Introductions

If you’re in love with someone with breast cancer, then you get the whole idea of life lived on a roller coaster.

For normal people, a roller coaster is a toy. Something fun to do for a few seconds where you scream, ooooo!, ahhhh! feel queasy then get off the ride and continue on through the amusement park, the State Fair or the Something Something Something Land/Fair/Flags or whatever.

But imagine for a moment living on the roller coaster.

For starters, there’s no roof and you can be pretty sure that it will get wet in the rain and cold in the winter. As well, the ride at the amusement park ends in a matter of seconds. (Factoid: the longest roller coaster ride is just over four minutes long – 240 seconds…) There’s nowhere to sleep, nowhere to eat, nowhere to go to the bathroom and nowhere to take a few minutes to catch your breath.

Loving someone with breast cancer is like living on a roller coaster – every time you start, you have to pay with a token and even if you get sick on the ride, you have to stay on it. When everyone else gets off, the bar stays down on your lap. The cars fill up again with laughing people and the next thing you know, you’re rolling again.

The woman you love knows all about the roller coaster, too, but they’re trapped in experiencing it in a way you can’t. You end up going up and down all alone. No one notices that you’re on the ride, too.

You try really hard not to notice, either. You want desperately to get off – and the thing is, you CAN. Men do it all the time – they abandon their wives, their girlfriends, their lovers as the treatments progress. You know you can get off, but you refuse. Over and over and over again.

You KNOW that the ride will end eventually – you just don’t know WHEN. You keep looking at your watch; you keep seeing everyone else get off after having a good time and you wonder when your ride will be over.

At some point, knowledge changes over to having faith that the ride will be over eventually.

That’s where I’m at now, and if I didn’t have a God who loves me, a wife who loves me and a family that cares, I’m not sure where I’d be in my roller coaster life right now…

Image: http://attractions.uptake.com/blog/files/2009/04/2074550533_e66356c6c9.jpg

Food Adventures Courtesy of My Wife & Rachel Ray

I know, the title seems to invite death. Not to my way of thinking or to the way a word freak looks at words! To read where it came from, click here: http://breastcancerreaper.blogspot.com/search/label/Introductions

One of the effects of chemotherapy appears to be changes in how people taste things. Favorite foods can become as tasteless as sawdust and as caregivers, we have to get used to the phrase, “Does this taste funny to you?”

I’ve found the best answer to that question is to say that it doesn’t taste like it’s over the expiration date (If it IS, however, get rid of it. The immune system of someone in chemo has been slowed down due to the destruction of cancer cells. ANY stray bacteria or virus can attack that immune system! It’s not a sure thing, but why risk it?). Also, you have to put on your cautious taste buds.

Humans developed taste buds in order to figure out if something that had been identified as “food” was rotten or not. If it was “rotten”, that would mean it might carry more than the usual bacteria and therefore make someone sick – or kill them.

But now that old favorites taste weird to the chemo patient, what can you do?

My wife has always loved watching cooking shows. One of those shows is of course, Rachel Ray. The show spins by fast, but you can go online and download any recipe you want. Better yet, go to your local Target, WalMart or Pamida store and get a Rachel Ray cooking video – any one of her 30 Minute Meals ones from the FOOD CHANNEL. Watch it together or have her watch it and then stand back!

The idea of experimenting with new foods also makes the prospect of failure easier to take – if it doesn’t taste good, you can put it down as a culinary experiment gone bad and move one! The National Cancer Institute’s EATING HINTS: Before, During and After Cancer Treatment publication suggests that you avoid formerly “favorite” so that a negative encounter doesn’t leave a bad memory that will ruin it for AFTER chemo when the taste buds recover.

And usually they WILL recover!

Now’s the time for adventure and while there may be failures, who knows – maybe you’ll discover a new favorite! I’m not sure my wife would have tried Israeli Spice Chicken if she hadn’t been on her journey through chemo. What I CAN guarantee now is that this dish just made it on our Most Wanted list!

Image: http://photo.goodreads.com/books/1171512060l/104446.jpg

Resources and the possibility of a NEW NAME! Vote and let me KNOW!

I know, the blog title seems to invite death. Not to my way of thinking or to the way a word freak looks at words! To read where it came from, click here:http://breastcancerreaper.blogspot.com/search/label/Introductions

I don't need to say much today -- the article below is a GREAT place to start thinking about your role as a caregiver:

http://health.usnews.com/usnews/health/articles/041011/11husbands.htm

This is the national organization the article alludes to...but doesn't seem to be much more than advertising. Where can we TALK?

http://www.menagainstbreastcancer.org/about/

HERE!

You got a question, a thought or a statement, let me know!

Men GOTTA TALK! (Who knows, maybe I'll change the name of this blog...

David Breasterfield!

I know, the blog title seems to invite death. Not to my way of thinking or to the way a word freak looks at words! To read where it came from, click here: http://breastcancerreaper.blogspot.com/search/label/Introductions

I don’t know what it’s like, exactly for my wife, but there are long times now where the idea of breast cancer (and the accompanying metastasis possibility) disappears from my life as if by magic.

Between treatments, which she undergoes every three weeks, life returns to normal. Well, not “old normal”, rather the new normal (see “The World Didn’t Fall Off Its Axis” -- May 28, 2011)…

But during this time, nothing seems to be “different” – we still chat, watch TV, go for walks with the dog, pay bills, see the grandchild, talk to people. Nothing seems to have changed. It’s almost like that magician – David Copperfield – worked his magic on breast cancer and made the whole thing disappear the same way he made the Statue of Liberty disappear.

And maybe there’s something to be said for that – we’re NOT pretending. I don’t think I could ever do that. But we’re living in the promises of the doctors and the profound hopes of our friends and other women we know who are breast cancer survivors.

David Copperfield isn’t really a magician, he’s an illusionist, and while we harbor no mistaken belief that the cancer has “disappeared”, it’s sometimes helpful to live in the illusion that the cure is NOW. It’s something that allows us to go on day-by-day. I cannot imagine how terrifying these days just before a chemo session are. But I can help my wife entertain the illusion that she is done with chemo and she has been declared cancer-free.

Besides – that’s only going to be an illusion for a few more months. By Christmas, Liz will be a breast cancer survivor and THAT will be the real magic!

Image: http://youtomb.mit.edu/thumbnail/YouTube/I/7/I7GaM3bbtOw/01c62c29d34ede51f7c12ef645d59945.jpg