No Matter What

HDU_PopeyeWhen I wrote Anything is Possible it was with two goals in mind.   One was to infuriate my husband into action.  Score:  0.5.   I erroneously made the assumption people would pick up the phone or email him and ask Why did she write that? What’s going on? Or better, Why is your head up your ass?

The second goal was meant to rope in some serious prayers for Hook.  Score:  1.0

Turns out anything really is possible and sometimes in a way even I could not have predicted.  The heavens opened up and sun shone through with a big Hallelujah.  Actually, it rained in Austin which was a glorious sight all on its own in our sun-beatened city, but the more improbable happened nonetheless:  The oncologist and I stumbled into agreement on three things during last week’s appointment:

  • No more chemo for now.
  • The focus is on nutrition and getting weight back on Hook.
  • We’re not at death’s door yet.

Did Hook’s god of reason, the oncologist, temporarily lose his mind?  Who knows and I don’t care.

The oncologist struggled not to roll his eyes at my insistence that the supplements Allan took pre-surgery were of any value then or are of any value today.   Now that I think about it, Hook probably did roll his eyes.  The stubbornness of these two men makes me want to inject chemo into myself and I would if it weren’t for the obvious:

  • Pre-surgery:  Hook gulped down supplements daily.   Had zero side effects from chemo and radiation for an entire six months.  Gained 10 pounds during chemo.  Note from Editor:  Hook gained a total of 20 lbs — 10 extra plus the original 10 he’d lost which was our first indicator that something was amiss.
  • Post-surgery:   Hook was off all supplements.  Has struggled to maintain enough weight that would allow him to withstand more than two injections of chemo.  Has consistently lost 1-2 pounds a week, the worse of the weight loss occurring directly after each chemo injection.

It would be easy to assume the downward spiral of Hook’s system was due to the reconstruction of his insides except things function fine albeit differently.

Do I think supplements can cure cancer?  No, I’m not insane just desperate.  And I don’t think the whey protein that I bought at the health store is going to remove the microscopic cancer cells that keep showing up in his blood count either.  But none of us have to be scientists or medical doctors to know that nutrition makes a difference when you’re raping the body of nutrients and stripping the lining of important organs and cavities.  Have we all forgotten, I’m strong to the finish ’cause I eats me spinach”?

A second opinion on this from another oncologist or even a nutritionist wouldn’t hurt.  But when I said anything is possible, it apparently didn’t include Hook agreeing to a second opinion of any kind.

Lots of Opinions but no Second Opinion

Someone, somewhere in the world just screamed out loud, He’s never gotten a second opinion???? No and if I were a recovering heroin addict, I’d definitely be shooting up as I type.  Instead I’m quoting Popeye.  Why do you think I wrote what I wrote in the last blog?

Hook “trusts” his oncologist while I ask myself daily why would anyone ever trust any doctor for anything.  They’re only human.  They’re only supposed to be advisers of health with final decisions decided by the individual and their family.   Example:  When a doctor continues to advise to use Miralax and Milk-of-Magnesia to alleviate certain issues, it is okay for a spouse to silently curse this advice and wonder when Disney started handing out M.D.s and instead incorporate more natural fiber into the diet by way of grains and nuts and berries.  Bingo!  Problem solved.  And I didn’t even have to take out a student loan.

Second Line of Defense

If a healthy body and a healthy mind are the first line of defense, prayer is the second.  God is not going to pull the wagon all by Himself and why should He.  Sometimes I envision the lips of our Lord poking out from a blue sky with a militant whisper, “You’re either with me or you’re against me.”  And of course it’s Popeye’s voice which sounds a lot like an upset Dick Cheney which is weird, right?  With Hook, I must lead with the tangible of nutrition, something that can be measured in grams and ounces before I introduce anything else.

Those not accustomed to prayer think prayer is for God.  It’s not.  Prayer is for the individual asking, sometimes on behalf of someone else, sometimes only for you.   I feel confident enough to promise atheists and agnostics that you won’t lose your anti-religion membership card by saying a simple prayer.  Pray to the flowers, the bugs, your motorcycle!  Pray to nothing but pray for Hook.  At worst, you’ll feel stupid or think, This is stupid, but you won’t actually become stupid.   You have nothing to lose while Hook has everything to lose.

Is My Begging Working?

The power of the heart and the mind is not something that can be measured.  It cannot even be seen.   In one of Hook’s and my science & data debates, I asked him to “prove” that he loved me, “Show me the data!” I said.  (Okay, I screamed it, but remember I’m desperate.)   I wanted to see research, something that scientists across the world would nod in unison what Hook knew to be of infinite truth in his heart.  “That’s different.” he said.   But it’s not and he knows it’s not, but my ornery husband is resisting the spinach.

One friend, a sorority sister, sent a private note sharing the story of how her husband was at death’s door 16 years ago.  He was given an 8% chance of survival.  At one point, their insurance carrier refused to cover further treatment because his chances were so slim.  The friend told me about an evening in the middle of the worst when her husband caught her in their walk-in closet crying over the magnitude of what they were facing.  They had two small children, 2 and 4 years old, now 19 and soon to be 21.  She didn’t want anyone to see her weeping.  After reading her story and for the rest of that day, I felt less alone.

I have a lot of alone time because I work from home, still I never know when tears will flow.  Actually, they never flow.  They gush out like pressurized water from an unused faucet mostly when I’m taking a shower, something to do with the warm water loosening muscles and with it any resolve I’ve falsely built up with the lone thought, I’m not getting through to him.

Linda Lou put things into perspective in our now weekly call.  “He’s a scientist, Rosebud.  He’s got to absorb each new piece of data the only way he knows how.  You have to give him space to think and decide, and if he decides he’s too tired to keep fighting, then you have to keep quiet and support him.  Can you do that?”

“Okay, I won’t say anything anymore to the oncologist.”

“Noooooo,” Linda Lou said through the phone.  “You stay on top of the oncologist!  Follow your instincts like you’ve been doing because you see what he can’t. But for Hook, Rosebud, you have to support him without saying anything.”

I love Linda Lou.  I trust Linda Lou.  I agreed with Linda Lou.   Then I set up a second opinion appointment with MD Anderson quietly just in case. Now each morning, I place the whey protein and supplement bottles in Hook’s line of vision, but I say nothing.

One friend’s three-year old daughter added “Dr. Hook” to her prayer list last winter.  The friend said, “Sometimes ‘Dr. Hook’ comes after her stuffed animals, but he’s still on the list.” I’m both comforted and inspired at the thought of this little blonde girl, Lily, her tiny hands folded in earnest request praying,  “And please bless Dr. Hook,” for a man she’s never met.

Just this morning Hook blended a whey shake with fresh strawberries and supplements and declared it was good.  He’s not giving up and I’m not giving up no matter what.

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Anything is Possible

HDu_AnythingIsPossibleI’m at home this morning while Hook waits at the hospital for the case manager to stop by and give the okay for a Tuesday release.

Over the weekend, the doctors were able to contain the blood clot by putting in a filter of sorts to prevent the clot from rising further up the body.   That was the non-invasive procedure I’d mentioned in the last blog.  Blood clots are common for people with pancreatic cancer.  As a preventative measure, Hook will self-inject blood thinners daily once he’s home.   He did these in January for almost a month, right after the December surgery, and it’s a procedure he’s comfortable with already.

Hook feels 100% better.  He looks better, has color in his face, and he seems to have twice the energy he’s had in a long time.    He certainly seemed to have a good appetite in the hospital which is not the gourmet place you want to find yourself hungry.

I wish I could tell you for certain how much time Hook has left, but we don’t know.  No one does not even the doctors.  He could have three weeks, he could have three months, he could have three years.   Everything depends on how well we self-manage his diet and exercise and stick to holistic methods of treatment as much as possible.

Thanks to everyone for your kind words and thoughts but especially your prayers.  A special thanks to my friend, Linda Lou, a cancer nurse who has been guiding and helping us to interpret information at each new turn.   Linda Lou has been the voice of reason since all of this started almost a year ago.  She’s been a trusted medical confidant to my family for over 20 years, and it’s her advice that led to my father living 10 more healthy years.  Had he listened to his oncologist, he would have been dead in six months with chemo in his veins.  When my father did pass away in 2011, it was from natural causes and not cancer, and not one ounce of chemo ever entered his body.

Anything is possible.  I know this because I’ve experienced it.  And I think that if my husband is willing to get his head out of his ass and open his mind to something more than just data that he can experience the impossible, too.

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Timing is Everything

HDU_TimingIsEverything“I haven’t posted a blog in weeks,” I said as he sat down at the kitchen table.

“I know.”

“I don’t know what to say.” My words lingered in the air waiting for his reply.  With a hint of resignation in his voice and as he pushed himself up from the table to stand, he agreed with another, “I know.”

“If I say what’s really going on, people will worry.”

“I know.”

“What should I share?” I asked because not everything gets told in this blog.   We only ever share the basics.  Reality would be too much, too bare, too human.

“I don’t know,” he admitted with a sigh.

“Me either,” I replied, giving in to this business of not knowing what to say and when.  That’s why I haven’t blogged for a month because I didn’t want to lie but I didn’t want to tell the truth either.

Status Update

Will the Hooks make it to Australia isn’t really the question anymore.  Will Hook make it another year is probably more accurate.

That second question circles us constantly now.  Certainly, it questions us tonight or I should say this morning/afternoon because that conversation above didn’t happen today but last week.   That conversation happened because of the continuing weight loss followed by a continuing decline of hemoglobin in Hook’s system.  That conversation happened after Hook’s unexpected blood transfusion two weeks ago followed by the really unexpected second transfusion yesterday or two days ago depending on how accurate you want to be because I started writing this at 10:30 at night in St. David’s emergency room.  Then it was 4:30 in the morning when they wheeled Hook up to his hospital room but now it’s almost 1pm central standard time the next day or today, Saturday, April 13th 2013.

Before the second transfusion, we’d had a disagreement over whether Hook should continue with chemo treatments anymore.

“You won’t have to worry about dying from cancer because you’ll drop dead long before then from malnutrition.  Something is WRONG and we need to find out what it is and we need to STOP these chemo treatments until we know what’s wrong.” My shrill voice rose to meet the hysteria that had been hiding behind all those lingering questions in my mind.  Is he going to make it? Why is he declining?  What are we not doing right?

But back to the emergency room which turned into an overnight hospital stay and my contact lenses that dried out over four hours ago are stuck to dry eyeballs and my brain’s not functioning so great so it’s hard for me to know if I’m making any sense.

  • A blood clot has formed in Hook’s left leg and he’s been admitted so the clot can be thinned and dissolved with a non-invasive, minor procedure.  We’d noticed some swelling last night and it was our good fortune that Hook’s oncologist was the on-call doctor.   His oncologist, who only two days ago impressed upon Hook the necessity of calling him for even the slightest changes in his body, recommended the emergency room right away.
  • Things look okay so far.  Timing is everything.   If we had waited until this morning to call, who knows what would have happened.  Or, if it hadn’t been his oncologist’s on-call weekend and instead we’d gotten another doctor who didn’t know Hook’s history, we probably wouldn’t have been recommended to go to the emergency room.  Timing is everything.

I could have begun this blog with the announcement that Hook was back in the hospital but I needed to ease you into it, because I don’t want you to worry and because timing is everything.

I’ll post again tomorrow with what I know.

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The Sugar Nazi

HDU_SugarThe ABBA songs ended.   No more ABBA and no more sugar in the Hook household.

Hook is convinced I’m obsessed with sugar and I’m convinced he has selective hearing.   At his final appointment with the surgeon last week, Hook mentioned to the doctor that he’d had a glass of wine the other night.

The surgeon said, “That’s great you’re able to enjoy wine again.”

Hook interpreted this to mean that he should be drinking wine, that he should be drinking it every evening in fact.  He’d stopped at the store on the way home from the doctor’s office and picked up a bottle of pinot noir along with a bucket of ice cream.  There was an assortment of real food stuffed in the grocery bags like cereal and vegetables but I was convinced that was just to throw me off the wine and the ice cream.  I watched Hook unpack the Pinot as I tried to stare a hole into the bottle.  When I saw the vanilla bean ice cream, I couldn’t keep quiet any longer.

“You bought ice cream.”  I said as I tried not to lunge for the Texas-sized bucket of frozen sugar-in-a-box so I could flush it down the toilet.

“[He] said it was a good way to put on weight.” Hook replied.

The surgeon had also remarked on Hook’s ability to eat ice cream especially since he was worried he wasn’t retaining enough calories.  Hook understood that he should be eating ice cream every day.   He feels certain that that is what the surgeon meant.  I had to wonder what language they were speaking until I remembered that my husband only spoke English and then sometimes not even that language.   I hadn’t met Hook at this last appointment because I thought it was just a routine visit.  I didn’t know the surgeon was going to be mind-fooding my husband into believing he could eat and drink anything he wanted.

Is Sugar Evil?

I’m not a sugar nazi.  Really, I’m not, but in addition to agreeing that no one deserves cancer can we all also agree that processed sugar is neither necessary nor healthy for the body?   Even though Hook desperately needs to gain weight, there have to be better ways to do so than through ice cream and wine.   Hook is and has always been a healthy eater so I do not begrudge him these small pleasures.  Instead, it’s my fear of sugar and how it interacts with those unfriendly C-cells of his that may still be lurking in his body.

Whether sugar is the evil of all cancer is still up for debate.  A layman like me gets confused with all the conflicting information from doctors and nutritionists and whatever else is floating around the web:

  • Some might say, I should listen to the holistic, wellness guru of an unknown, unverifiable website:   Holistic Website Here
  • Others of you might think that the Mayo Clinic remains the voice of reason, except their own comments on sugar and cancer are also without author.  For all I know, some pro-cancer freak hacked their system to write, “Sugar doesn’t make cancer grow faster.”   Random, unidentifiable articles on a Reputable Website Here.
  • Or worse, the renowned MD Anderson Cancer Center which says it’s okay to eat sugar so long as it’s not more than “six teaspoons per day.”   Do you think that’s a typo and they meant per hour?  If not, we’re all in trouble:  Scary Sugar Website Here.

If you’re wondering, ‘Why do you care?  Didn’t they remove the cancer?’

We don’t know.   We expect to find out on Monday the 18th when we meet with the fist-bumping oncologist to review the CAT scans taken last week.

I asked Hook if he wanted to comment on this blog since I felt we had differing opinions on the sugar topic.

“We agree on what to eat.”  He said.

“We do?” I asked, an incredulous tone obvious in my voice.

I could hear him sigh from the other room as he answered, “Yes! Why do you keep asking?”

“Because you keep eating processed sugar?”  I hope that was the right answer.  It feels like it was.

Silence.

I’ve never bore children but something tells me these circular conversations might sound familiar to some of you moms out there.  Who am I kidding.   Anyone in a relationship has had these conversations, has these conversations, is probably having these conversations as you read.

My vote is this:  Cancer or no cancer, stay away from sugar.  Six teaspoons a day?  Talk about sugar nazis.

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God Moved to Australia and He Did Not Take Us with Him

It is 3:30 in the afternoon on a Saturday and I am drinking a glass of champagne. I’m not celebrating anything or I’m celebrating everything. I do not know which. Earlier, I cried to no one because no one was here which is usually how I prefer to lick my wounds:  in private.  Image

Yet here I am blogging because writing for me is a release and even though blogging can often be thought of as sloppy writing – please pass the champagne – I find it therapeutic.  Plus, I know it will prevent me from having to repeat this one hundred times.

I am grateful you understand, grateful that there might be one hundred people who would actually want to hear this story, but my gratitude is waning so bear with me as I bare my soul—not really—as I bear witness to my own life (yes, that’s better).    That’s about as crisp as I can make this intro.

The Hooks Are Not Down Under

A couple of weeks ago in a moment of despair, I pounded my fists against a bare wall and screamed out, “Are you on crack?”   I was screaming at God of course because someone was pulling the strings in my life and it wasn’t me.   God was either on crack or He was in Australia or both.

My blog is late but my period is not.   It has been these small blessings that have carried me for the past four weeks, and this update is long so I’m going to give it to you straight.  Are you with me?

The Bad News:

–          Hook has been diagnosed with pancreatic cancer.

–          We had to move out of our house with barely a week’s notice amidst doctor’s appointments because we had leased out the house in anticipation of Oz.

–          Our year and a half of planning for a year’s sabbatical in Australia is off.

–          Hook is having a hard time going cold turkey on smoking.  (If you’re thinking about not feeling bad for this man because he ‘brought it on himself,’ those are words you never want to say to me or even hint at.)

–          I am angry all the time.   It’s like I’m in an endless week three of my cycle where I vacillate between manic happy and manic sad.

The Good News:

–          Hook’s cancer is not stage four. Someone asked if it was stage two or three, and I said, “I don’t know.  I only know the oncologist kept saying ‘It’s not stage 4’.”   Apparently stage four equals quick death. Instead the oncologist and the surgeon, who seemed to welcome Hook into their sciency brotherhood with a medical Q&A I wasn’t able to follow, believe they can kill/shrink/remove the mass and send us on our way … to Australia … maybe in a year.

–          Hook’s university pushed out his sabbatical and pulled him back in for the academic year.  (Translation: They did not make him waste his year of sabbatical while getting chemotherapy and radiation treatments. This is a very, big deal.)

–          Qantas, oh Qantas, how do I love thee.  Qantas, those wonderful, odd-sounding Aussies refunded our $3,599 airfare 100%.   One hundred percent!  They didn’t even take a change fee.  The Qantas lady, that beautiful strange-sounding Sheila, had this extra-sensory perception thing where she could tell I wasn’t making up our horrible turn of events.  God bless that woman.

–          Hook has been prescribed medicinal marijuana.  Just kidding.  Wouldn’t that have been cool?  We could have sold it on the streets in our new neighborhood, which would have fit right in with the meth lab I’m convinced is in operation next door and with our neighbor-no-more who was arrested two days after we moved in.  Hook said, “Good morning babe.  The police arrested the neighbor across the street this morning.  They walked her out in handcuffs around seven am.”   I looked at him with sleepy eyes and replied, “Hmm, is the coffee fresh?”  We are sleeping in our own bed again and we only live ten minutes from where Hook will get his treatments for the next three to four months.  It’s the little things that matter now.

–          A literary agent asked for 50 pages of one of my manuscripts.  More on this in the next blog.

So it sounds like the Good News outweighs the Bad News, right?  Yes.  So then where does God on crack come in?

God on Crack

We hired a local property management company for our two properties assuming we would be out of the country of course.  The irony that Hook and I own two homes but had no place to live did not escape either of us.  But we had signed a management contract and we meant to honor that contract even after we had received the diagnosis of Hook’s biopsy.  The list of how the property management company screwed up is too long to share.  I would type their company name here but I’m afraid if I see itImage again in print, my head might actually explode from all the venom built up inside.  I’m like that horse in Young Frankenstein. Every time I have to say the name of the company or Hook says the name, words of a dark nature start to spew from my lips and they come so fast I can’t even enunciate so that it just sounds like I’m gurgling and Hook has to walk over to me and rub my back and soothe me with words, “It’s okay babe. It’s okay.”

They lied about when the tenants signed the lease.  They lied about whether we had any say in who moved in.  They lied about when the tenants were going to move in.   And get this, the tenants still haven’t moved in yet and we haven’t even been paid our June rents as of today, June 30th, even though the company received both rents on June 1st.   What this all means is that we never had to move out, only to put our stuff in storage for two weeks, only to call the moving company a second time in less than a month to move us again, only to find ourselves living out of suitcases, driving back and forth from north to south for almost daily doctors’ appointments.  I’m hysterical just writing this.

Crack, remember?

A simple, “We’re sorry, we screwed up,” would have gone a long way with me, but instead the company tried to explain their way out of it.  You know how it goes, when you tell a lie then you have to tell another one to cover up the first one, then you start to lose track of what you told and to whom, and pretty soon all that ever comes out of your mouth is a lie even when you don’t have to lie, even when the truth would actually be better.

Crack. Cocaine.  Please, somebody buy me a margarita and don’t be stingy with the Don Julio either.

And In the Present Moment

Yes, Hook is doing chemo now although right at this moment, he is likely fishing or collecting bugs in Port Aransas which is where I sent him for a long weekend so he could relax and have some much-needed Hook time.  I’ve been doing my best to avoid most of the public, only attending the most basic of events or those things that don’t require me to speak or to think or that allow me to be somewhere else in my head for a short while.   Mostly, I’ve been avoiding people I know because I don’t want to hear or say the word “cancer” except sometimes I blurt out the story like a tourettes patient to someone I run into who doesn’t already know.

I actually hate the sound of it: Cancer.  Why couldn’t they have called it cake or candy or curtains?  Why does it have to be called cancer?   “Hook has cake! Hook has candy!”  Doesn’t that sound much better?

I don’t want to see little brochures that read ‘Fight Cancer’ or to hear people say, “You’re going to beat this thing.”  It’s not a war, cancer is not a person.  I don’t even know what it is except this incredibly scary, uncontrollable thing that seems to be running our lives right now.   I hate it.

Yes, I am losing my mind.  No, I have not upped my alcohol intake except for today, and that’s only because it’s a Saturday and I have emptied the last of the last of the moving boxes and I deserve a toast.   Here’s to me, damn it.

And here’s to my husband – that kind, funny, ornery, obscene man I fell in love with four years ago.  He deserves a more patient wife, a stronger woman who would know how to manage the uproar better.

Next Blog:   Hook Quits Smoking for Good.  Or, Man’s Anus Stuffed with Cigarettes, Found in Alleyway.

Remember, God is in Australia, possibly on crack.   It’s just me and the champagne.

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