These Few Words~

 

I will sing you to me…..

These words curve around my lower right leg, from knee to ankle.

My 3rd tattoo.  My first one says nothin’ but love, our credo in hospice.  Those words swirl in a circle on the back of my neck, with the circle ending in a small heart, and the circle is left open.  As my heart must be in this new life without him.

My second one simply says Love, and is on the inside of my left wrist, in the exact location where the tumor I named Wilson, first showed up on Chuck.  It took a 11-hour surgery and 4 reconstructive surgeries afterwards to rid ourselves of Wilson and reconstruct Chuck’s arm.  His right thigh looked like hamburger when they were through.

Each of my tattoos carry special meaning, as all tattoos must.

But…my 3rd tattoo…

Chuck and I both enjoyed watching the movie Australia; a movie set in pre-WW2 Australia, dealing both with the invasion by the Japanese, and the kidnapping of mixed race Aboriginal children from their parents.  The kids were sent to orphanages where they were taught white ways. 

One of the most charming characters in the movie is a little boy named Nullah, a mixed-race boy, taken in by the character of Nicole Kidman.  The two are separated, in the movie, by the kidnapping of Nullah.  As she stands on the pier, desperately trying to keep him with her…as he is taken away to an island for orphans, he says to her I will sing you to me.

And she responds and I will hear you…

In our Happily Homeless travels, Chuck and I visited the huge bike rally in Sturgis, South Dakota.  We didn’t go there specifically for it, but it was going on when we were there, and we walked around and admired the bikes and fell in love with the state.

In the second year after his death, my daughter, Rachael-Grace, went on the road with me for 6 months, supporting me in my Odyssey of Love.  We crisscrossed the USA, and, in the process, ended up in Sturgis, SD, and, again, happened upon the Sturgis bike rally.

South Dakota is home to Crazy Horse National Monument, one of the places Chuck and I visited together, and the final place he’d asked me to return to, to scatter his cremains.

Rae created a beautiful ritual at Crazy Horse, and was the one to scatter her dad’s cremains there.  And then we walked around Sturgis.  Which is where I found the tattoo artist who created my 3rd tattoo.  I’d told him about our Love story, about my Odyssey of Love, and though I didn’t know when I first got there to SD what my tattoo would look like, the words came to me as I walked about, and he did a quick sketch.  Unfortunately, the cost was too much for me to justify, and I was honest with him about that.  Another of the artists, who had listened in to my story, told me that he thought I really needed to get the tattoo there…it was the last place Chuck had named, after all, and given the words I wanted, it was perfect. So, he offered to pay for half, stunning me.

I will sing you to me….

Words spoken in the movie Australia, among the Aboriginals, when saying goodbye to a loved one, with no idea whether that one will be seen again.  Words of hope for the future, maybe…

I’ve no idea whether this phrase, and the concept behind it, are true to the Aboriginals or not.  I honestly don’t care; the idea of the words touched my heart years ago, and they touch my heart now.  And I seek comfort where I can find it.

I will sing you to me…

These words that wind around my calf speak of my wish to believe, even as I struggle with believing, that I will see Chuck again someday.  Somehow, maybe, he will greet me when I die.  Maybe.

Meanwhile, in this life that I must live without him, maybe I can sing him to me in my heart, by living the Love he left behind, by reaching out with kindness, in service to others. 

I will sing him to me…

And the other half of the meaning of those words for me?

Maybe, maybe, maybe, I will sing my future to me even as I live each moment without him, as I continue this Odyssey of Love.  The future that I still don’t want, that I don’t care about, but one that seems as if it must be lived for all the days of my life until my own death.

I hold these words to me, written as clearly on my heart as they are written on my calf.

I will sing you to me…

 

Cake and rage~

562337_10152215658810400_934829727_nThis is a piece of cake.  This is the piece of cake that Handsome Husband ate after his lunch yesterday.  Handsome Husband ate this piece of cake not while he was sitting at a dining table in a house, or at a restaurant, or on a sun-filled patio.  He ate it from a tray table that perched across his hospital bed.  Dinner dress was a green patterned hospital gown.  His hospital gown was accessorized by an oxygen tube thingy in his nostrils.  It helps calm the coughing and opens his airways a bit.  Which are, of course, compromised what with the lung cancer that is ravaging him.  It looms most largely in his left lung, though the right lung is also involved.  And this is the piece of cake that is the first piece of cake that Handsome Husband has allowed himself in two years.  This is also the piece of cake that I would symbolically stitch on a piece of material as a flag to wave defiantly from a pole.

Rage.  Rage and cake.  Yeah, those moments have happened for me.  Because Handsome Husband did everything right.  He hasn’t just eaten well in that he ate a balanced diet.  In these last couple years of travel, since his first cancer (our old friend Wilson), and the systemic fungal infection (is that what he’s had, or has it been a continuing growth of an undiscovered cancer all along?), he’s gone  sugar-free, gluten-free, wheat-free, dairy-free, everything free.  We’ve spent thousands on supplements.  Really good ones, not the kind you get at most stores.  He’s always loved research, so, when presented with the challenge, he dug in to discover every frickin’ thing he could about being healthier in every way.  Mind, body, spirit.  And believe me, folks, eating well on the road is a tough proposition in any circumstance.  Eating in a truly healthy manner…well, its been a massive challenge and we never quite figured it out. But oh, has he made the effort!  Which brings me to my rage.

I woke up a couple of days ago-day 2 of his hospital stay, here at our rental, and went to the kitchen to make some breakfast that I didn’t feel like eating.  We’d gone out of here in a rush on the day he went into the hospital.  Making a trip to the ER is seldom done in an organized manner, is it?  So the special tea that he’d been drinking was sitting on the stove top.  Its’ a vile tasting tea, but it was going to help build his immune system.  A handful of various supplements were on the counter.  Almond milk in the fridge.  Healthy cereal in the pantry.  Organic, range-fed eggs in the fridge-and have you priced those things?  Really expensive.  And none of this stuff just happens on its’ own, you know.  The tea isn’t in a sweet little tea bag.  No.  It must first be soaked for 1/2 hour, then steeped.  Then sit to cool off.  And the eggs can’t be cooked in any kind of butter or regular oil.  It must be cocoanut oil.  Even olive oil, which is good for you, isn’t good to use as an anti-stick because of how it  breaks down or something when heated and that isn’t good for you. Whatever.  And, of course, he couldn’t have toast with that because he couldn’t eat wheat or gluten, and any breads that are gluten-free taste like crap.  Not that you can butter it anyways.  Or at least not with regular butter.  You can use almond butter, (have you priced that recently?)  No bread for two years either.   Two large water bottles occupied one full countertop.  Reverse-osmosis water. In a BPA free jug. All the metals were removed from the water, it was purified, etc.  The price on that is actually really good.  But carrying that 5 lb bottle around?  Try it.  The list is endless.  The results of those lists littered the countertops, left in a whirlwind drive to the hospital as Handsome Husband’s face crumpled under the pain he was experiencing.  From, what we know now, was the cancer.

I’m not saying my eyes actually turned red, standing in that kitchen, but boyohboy, did I feel a rage rise up inside of me.  Handsome Husband has denied himself so much in these last couple years, food-wise.  He hasn’t felt deprived, necessarily, but I felt deprived for him, as eating became such an intense research operation. I wanted to sweep every bit of all that crap off the counters, against the walls, everywhere.  Yes, dear readers, I was raging against…food.

He’s done what he was supposed to do.  He balanced acidic foods vs whatever the hell else it is you’re supposed to balance, built up his immune system, rid his body of the sugars that feed cancer, detoxed the metals.  Exercised, did strength-building, meditated. All the fucking things he was supposed to do.  That we’re all supposed to do.  Its’ been an absolute fucking struggle to learn and do it right, and do it on the road, with few to no cooking facilities.  But bygod, he did it, because he’s nothing if not intent and determined.  And he isn’t one to rage about this, never mind anything else.  He’d say well, he’s healthier now for it, going into this cancer.  He’s probably right.  On that particular morning, I was the one who was raging.  Yeah, I probably have food issues.  I mean, what balanced-mind person with a healthy relationship to food wants to get a heat seeking missile and demolish any and everything that smacks of, well, being healthy?

Its’ all normal, I know this.  I need a target for this helpless feeling. Well, I’m having my revenge, people!  By god, I’ve actually had a few diet pepsis.  With aspartame in it.  I didn’t add aspartame to it, but we all know that’s the sweetener in it.  And I’ve eaten some milk chocolate.  Not that dark cocoa crap.  And I’ve liked it.  Take that, you dastardly….something!

When presented with the cake on his tray, Handsome Husband looked over at me and said “Ordinarily, I’d let you have this piece of cake.  But, you know what?  Fuck it”.   And he ate it all by his own self.

Rage against the machine, man.

Okee-what? moments-

So, yeah, here we are in Florida, one year post that scurvy tumor Wilson!  Last year at this time, waiting in the waiting room for a 10 hour surgery to be over, and then seeing Handsome Husband in Recovery.  Now, if we were still in Destin,  I might see some similarities to the ICU, but, thank goodness, we’re not there-we’re here, with here being Okochobee, (http://en.wikipedia.org/wiki/Okeechobee,_Florida).  There isn’t much, actually, to recommend it. There is the largest lake in Florida here, but not much has been done to make it attractive, at least as far as what I’ve seen.  Yes, you might ask, then why are we hereabouts, and you would be fully justified in speculating on that.  Handsome had a chance to visit with a NJ buddy of his up this ways, who was visiting from up North, so we meandered our way up for a couple of days.  He spent the day with his buddy, and poor little ol’ me-I spent the first day in months on my own at our hotel, occupying myself with, if I’m honest, meaningless trivia.  Don’t worry, good people, I survived the ordeal without too much ado…

It’s funny to me.  Handsome Husband and I are together constantly.  I mean always.  There are times when we’re somewhere for a few days or a week and I’ll go wander locally by myself for a few hours.  But, really, we’re joined at the hip.  Which, surprisingly to some who could not imagine such a thing, really works for us.  The longer we’re together, the more we like being together.  We joke that we are horribly co-dependent on one another at this point.  When we’re not together, we miss one another-is that a good thing or not?  Jeez, are we going to be one of those couples who, after one dies, the other quickly follows?  And yet, we’re each individually very independent.  Ah well-  we’re having fun is all I know.  There are long-range health problems to be dealt with on a daily basis, resulting from radiation treatments, and that is a continuing frustration, but what matters most is that we’ve already racked up quite a few adventures since this time last year.  Sunday we’ll return to Homestead (very nice military lodging there) and then back to Key West for another week (I’ll love that!)

For all our friends who truly became our family last year in the midst of the fucking cancer crisis (henceforth to be known as FCC), I’ll echo my thoughts of last year:  you opened your hearts and your homes, you brought us meals, you gave me rides to the hospital, you did so much, and Handsome and I will always remember that.  You are, collectively, just peaches-and a bag of chips and all that!

Crossing the Finish Line of Cancer moments…

So yesterday marked Handsome Husband’s final surgery.  Earlier in the week, he had his appointment with Dr Lackman, who gave him the news we were anticipating-that he is, once again, cancer free.  And yesterday, Dr Kovach did the final debulking.  That sounds like such a heavy word-and my translation of it, into civilian terms, is this:  Dr Kovach hinged open one side of Handsome Husband’s wrist, took a rubber mallet,

tamped everything back in, closed the wrist, and used a sander to get it down to more normal size.  That is totally a non-medical explanation, but you got an image of it, didn’t you?  Where Wilson resided is no more! Yay and celebratory fireworks etc!  Due to a national shortage (who knew?) of a particular anesthesia, they had to use a new one, and were, additionally, unable to do an arm block, so used general.  Which is all well and good, but it gave Handsome Husband the one really negative experience of all of this, in that he had negative after effects of incredible loopiness (my official term), and nausea.  (Anytime I say that word, I hear Jerry Lewis saying it in one of his early movies with Dean Martin (nah-zee-uh)…)

Because we’re staying in lodging at MAFB, it took us a good while (good meaning long distance, not that we enjoyed it!) to get back, in rush hour Philly traffic.  Two and a half hours specifically, leaving me more convinced than ever to NOT live on a coast, East or West, again.  And all was going pretty well through the evening, until I started getting some major pains resulting from my last week’s D&C, which was, of itself, a result of an ablation that hasn’t quite worked out the way I hoped.  Major pain that was like labor all over again (if I’d known what labor pain was like prior to having kids, I swear I wouldn’t have had kids, bless their hearts and I’m glad and all that NOW, but, yeah, wouldn’t do it again without equally major drugs, as in tune me out and wake me when they’re 18).  In any case, those pains and a sudden gushing of, pardon me for getting graphic here but its’ my blog and I’m trying to be honest here, blood, sent me post-haste to the bathroom, which quickly assumed the appearance of a murder scene and there should have been some of that crime scene tape surrounding me.  Yikes and all that!  And then the pains started, and, let me just say, holy Christopher, they continued on and on and…on and on.  Picture this:  me writhing on the bed in pain, moaning, and Handsome Husband, still looped out of his mind from anesthesia, opening cabinets and drawers throughout the room, desperately searching for the lovely pain meds the ER dr gave me at an earlier visit (yeah, that happened too).  And, once said pills were located,


and ingested, only to take a frickin’ lifetime to do their job, him insisting that he could drive me to the ER, which is where I happily would have situated myself and accepted every modern pain medication known to man.  Bless his heart, one of the beauties of his surgery medication was that he thought he was thinking sense, talking sense, and making sense, but I, even while having my insides shredded, could recognize that, yeah, he was out-of-it in a way that left him inoperable, and incapable, in a big way, of operating a can opener, never mind a car.  He loves me dearly, that man, and would move heaven and earth to get me to where the pain was no longer present, and I love him dearly in return, but I was in no way getting in a car with him, and I couldn’t move myself out of a fetal position in any case, to walk to the car.  Yeah, we were a pair last night…

Things are better today-Handsome Husband is present and accounted for, in mind and body.  I’m on pain meds, and I like it that way, until I see the dr tomorrow.  This is absurd and ridiculous, all the dr appointments we’re scheduling.  Is this our future as we get older?  And what’s next-pastel clothing, velcro sneakers and black wrap around sunglasses?  Golf carts to get us around our senior citizen complex in god’s waiting room, aka Florida?  (because we are headed to Florida at the end of the month).  No, no, no-repeat many times over!  We’re getting back on our feet, and our adventures will continue-there is a country out there to yet see-

The good news-cancer is gone, Handsome Husband has his arm “back” again, life is good.  And I had a way too intense a time remembering back to when I went through labor, so I’m incredibly thankful that I can no longer have babies!   Our lives, me and Handsome Husband, are going to get back on track from this moment on.  The best is ahead of us~

yeah its pretty intense…moments~

For so many reasons, this one is going to be tough to write. Not the least reason being, I know my most loved Handsome Husband will probably read it, and I don’t want him to be worried about me more than he is, plus writing down some of this stuff literally has the ability to make me sick to my stomach, but I also need to get it out of me.  Perhaps some emotional vomit will get me back on track?  With apologies to all my loyal readers (yes, there are thousands of you, I just know it!) for all the ramblings that may incur…

So, I now have a visceral understanding, deep in my gut, of the phrases I have so often read/heard over the years: “my stomach turned to acid”, and “hysteria bubbled to the surface.”  And, after many years of hearing people say how their appetites “just disappeared” and “they couldn’t keep anything down” it has happened to me.  A quick back-up here (cue the beeping noise)….

Friday, radiation appointment.  Last day of the first week of radiation.  Don’t like it, but didn’t expect anything out of the normal. (First mistake. Everything is out of the normal at the moment. Now we just have more out of the normal) Generally, Handsome Husband is home by mid-morning after the early morning blast of what is going to kill what is in his arm.  But I get a text that the medicals, after his blast, and seeing the wound care specialist (who was not happy with Wilson!) are sending him over to see our favorite doctor, Dr. Lackman, who was also not happy with Wilson.  It seems that, in spite of these hot shots of radiation, Wilson is continuing to grow.  Continuing to grow rapidly.  And, though this was expected, is ulcerating.  For the moment, for those of you who are not medically inclined, let’s just not talk about what “ulcerated” means, ’cause it ain’t pretty.  The rest of the morning passed with “keeping busy” being the name of the game for me, and imagination needing to be reined in.

What we learned: Wilson is, yes, growing.  This doctor, who is only one of two in the world who has expertise in this particular cancer, has never seen anything like this.  The significance of Wilson growing externally, is that the cancer is growing internally. And that is obvious when you see how more and more it (Wilson) basically needs its’own parking lot at this point. I may garble some of this, what with lacking the language, but here is my translation of what Handsome Husband learned.  Wilson needs to be given the “Hiroshima” treatment-blast the shit out of it. Surgery now will accomplish nothing-the surgery is so intricate regarding veins, tendons, plus a “flap” created from a skin graft and if that is done, then more radiation, it would destroy whatever was done but further radiation would be necessary because the cancer would still be there. So aforestated radiation is going to be upped to twice daily, 50% more power, 6 hours in between which means spending the entire day in Philly (it makes no sense and would cost more to go back and forth) for 12 days and if this doesn’t work then they go all Hiroshima and Nagasaki but what that would do is cause so much damage to Handsome’s arm and the long range effects of that massive dose of radiation as he and I discussed that he will opt instead at least where we are at the moment for amputation which is the only other possibility BIG BREATH.

Back to the beginning of this blog.  As he’s telling me this, and of course I immediately feel like a wuss, I become vaguely aware that my legs are watery, my stomach is shaky, I feel sweaty, and I want to vomit.  Deal with it, deal with it, and arc over to Sunday evening when we had a nauseating (okay, I did, Handsome didn’t) realization that bastard Wilson went to town and got something major that really made it hit a growth spurt just since the AM hours.  I won’t go into appearance here. Suffice to say, it reminds me of those nasty little pictures they used to, I swear, take pleasure in showing in our 7th grade science books of all the worst portrayals of the nastiest diseases in the world, right there for your viewing pleasure.  Then multiply all of those pictures by whatever the highest number in the universe is, and continue going all geometry and trigonometry and computing on it, and you start to get a vague idea of it. Or, maybe that’s just me, being totally and completely and stringently non-medical and all.  Bottom line for me is what this whole blog was supposed to be-knowledge of Wilson and what it looks like makes me seriously dizzy and light-headed (and not in an “Oh, I’m blonde way, but wanting to lose the last 50+ years of meals way)

I’m going to start rambling here, so will, out of mercy for all of you, put an end to this entry.  We have today, this moment, and, possibly, a few lbs to lose since the whole eating thing just isn’t happening…