We're All Scared

I have been a member of a number of MCL groups on Facebook for the last few months.

A new group started up yesterday.  It's for partners and spouses of people with MCL.

In my introductory post, I told about my situation, and I talked about being scared.  My collection of fears is not small, and each little fear has been dancing in my head quite obviously the past week or so.  Powerful little buggers they are.  Or so they seem, anyway.

In response to my post, a woman said, "We are all scared."

I knew that.  But I forgot.

We are all scared.

On the MCL list, we are afraid of the disease, of the chemo, of financial issues, of relationship problems, of friends leaving us because they can't handle what's going on with us. We're also afraid that we can't handle what's going on with us, and we're afraid of death.  I am not afraid of these things.  We are afraid of these things.  We, the spouses and partners of people with MCL (along with just about everyone else), are afraid of these things.  The fear is not mine, it's ours.*

And right now, many parents of school-aged children in Colorado and other places are afraid for their children to be walking to school or playing in the neighborhood, because a young girl was abducted a few days ago.

It seems that EVERYONE is scared of something. And that makes fear seem very, very normal, and I feel much less alone.





*(We could argue that feelings aren't owned by anyone - they "just are" - and that way of looking also helps me to see that I'm not alone in experiencing fear.)

Leo Update

It looks like Leo has a new home, and it isn't ours.

I feel happy knowing that the people he now lives with are enjoying that beautiful guy. And Leo has a German Shepherd friend there, which he wouldn't have here.

AND Michael gets home tomorrow. We will have a quiet time of re-connecting.

It all works out.

Fourteen and a half years ago, when we went looking for a 4-legged family member, Buddha was the first dog we visited. But I, being of the picky variety, wanted a black lab, and if Buddha had any retriever in him, it was just a tiny bit. So we passed him up and went to a different shelter where we met a couple of black labs. They were not perfect dogs like Buddha was, and I'm not hard-headed enough to take a not-so-wonderful black lab over the most awesome dog in the world, so we went back and snatched our sweet Buddha.

One of the best decisions we've made together.

Why this process has to be so much longer and harder, I don't know.

Don't tell Michael that I truly considered bringing home a 160- pound Rottweiler sweetheart yesterday. He was on a diet after reaching a high of 180. His neck was at least as big as my thigh (but much more muscular). I just didn't want a six year-old dog. And I also didn't want to be the one living in the doghouse when Michael came home and saw that I had brought home a porker of a dog. Tee hee...

There Was Love, And I Passed Him Up

Oh, I'm in love.

And I can't do a thing about it.

My Love is at the animal shelter a few miles from our house.

Michael is at his qigong retreat many miles from our house.

The two have not met.

My preferences are: a big, black, male dog.

This dog I fell for is: a HUGE, white, male dog.

One out of three isn't bad, is it?

I got an emailed okay from Michael, saying that he trusted me on making a decision regarding a different dog whose information I had sent him. But that dog did not fall in love with me or allow me to fall for her. (She, being a "she", met two out of my three criteria, but she flunked the personality test, which should be added to the list of preferences above.)

I guess I could have used Michael's email as my ticket to get WHATEVER dog I fell in love with because, after all, Michael said that he trusts me, right?

But trust is earned, and I might lose that if I came home with a HUGE, white Love who sheds almost as much as me.

While I was on retreat, I had kinda sorta thought that getting a dog might not be the wisest decision. It's hard to travel, one more thing to deal with. Blah blah blah.

Then I came home to less-than-fun-times, and I realized that we need all of the joy and love we can hoard. Life is too short to wait and yippeee later. For me, a dog is like a baby. They both open up my gut and heart and turn me into a kid again. If there is still a kid inside this old body, it needs to come out and play!

I know there are other dogs that I can love just as much as my beloved Leo (yes, that's what they say his name is right now, subject to Michael and I finding him the most perfect name WHEN he comes to live with us). Our new awesome dog doesn't have to be Leo.

But, I really, really love him lots.

Sigh...

Into the Fire

A week of cell-exploding beauty; which included probably thirty hours of just sitting and watching the birds, chipmunks, deer, and mountains outside my window, along with no spoken word for five days.  And then I came back to...  Life.  Which I never left, of course.  But when the most important thing that needs to be done is to fill the water dish for the birds, one can get a little, er... forgetful about the fact that Life has its own plans.

First, the kind of bliss that I, in my naiveté, would choose for the world, if I were to run things:

I arrived at One-Of-The-Closest-Places-To-Heaven more than ready for

Silence.

And other than a small amount of book reading that I did and a few profoundly wise and insightful offerings of notes written back and forth between me and a friend, planted and discovered in a secret hiding place down in a gully under a big rabbitbrush, I had no human or verbal contact with the world for five blissful days.

I realize that might drive some people crazy.

It emptied, then nourished my soul.

This is what replaced the views I have at home:

Looking east from my little cabin

The view looking out my western windows

(Are ya jealous yet?)

The view about six feet outside my big southern window.

The first day or so, I watched as birds discovered and drank from the water I had placed in this (what do you call a dish that you put under a potted plant?) bird-watering dish.  The dish held a gallon of water (one whole milk jug that I found under the sink).  What a perfect place for birds to drink in this parched desert!  For hours and hours, I sat and watched all kinds and colors of feathered creatures delicately sipping.

After a day or two, a mountain bluebird walked into the water and waded around a bit.

Mountain bluebird

Then, he just went into fits of birdbathing joy.

Splish splash, I was takin' a bath

It had never entered my mind that this was not only a place for drink, but also a place to bathe!  (Drinking and bathing and shitting in one place... oooooh, yum!)  Obviously, I have not been around many birdbaths in my life.

I am not exaggerating when I say that watching the bird show outside my window for days was one of the most healing experiences I can remember having.

Deer also came to visit the bowl a couple of nights, and they drank it dry.  One morning, I got to see two males imbibing.  I was THIS close, but behind glass, so they didn't know I was there.  I saw how their noses move when they drink.

When all one has to do is to sit and watch, or sit and ponder, or take a walk and ahhhhh at the beauty and spaciousness, a clearer, more open perspective to life takes over.  Spacious and accepting.

After staying up late the last night of the retreat, due to cleaning my cabin and having fun reconnecting with the other retreatants, I drove home through rain, hail, snow, and incredible yellow aspen views.  I was very much looking forward to slowly entering the world that everyone here had continued to inhabit.

But my experience of coming back was more that of a c-section birth - Bam! From womb to bright lights - than a natural transition.

I won't give you all the gory details, but I'll just say that my family took the opportunity of my absence to have much more drama than I would have preferred (but who asked me?).

And Michael and I ended up in the ER about seven hours after my arrival.  Fortunately, the hospital didn't keep him overnight.  Unfortunately, they did entertain us until 2:00 a.m.  I have to say, if I need to be partying until all hours of the morning in a place with mostly cold, institutional decor, I am happy that the people I'm partying with are my sweet hubby and the kind and wonderful people at our nearby hospital.

We still don't know the source of Michael's excruciating gut pains, but it's not his liver or his gallbladder.  Pain meds, anti-nausea meds, and stuff to coat his digestive system helped.  Is this a cancer thing?  Is this irritation from all of the weird things he takes?

Cancer (and other diseases, I'm sure) changes the game.  Every physical issue that comes along brings up wonders and worries about its cause.

This morning, I opened a book that I had ordered before my retreat and which arrived while I was gone.  From the preface I read:

This book is about liberation.  That doesn't mean the end of earthquakes, wars, bankruptcies, unemployment and cancer, and it doesn't mean a life without heartbreak, depression, anxiety or addiction.  It's about recognizing that this is the Holy Reality, and that the Holy Reality is not somewhere else.

Amen.



(Quote from Nothing to Grasp by Joan Tollifson.)

Ahhhhhhh....

Things are easy and calm here.  Michael is settled into a routine pour le maintenant (routine for the moment).  A nice eddy in the stream.  The rapids are fruitful, and this moment of rest is sweet.

I'm leaving for retreat in a couple of days.  During this retreat, I will be in my own little hermitage in a beautiful location in the San Luis Valley of Colorado.  I may not see another person for a week, or I may choose to spend an hour here and there with other retreatants.  It will all unfold perfectly.  I look forward to seeing what comes up for me as I sit and watch the clouds move across the mountains while the deer graze outside my window.

Not long after I get back, Michael will go on another Qigong retreat.  I know that he feels very supported and empowered in the presence of the Qigong Master and the other participants.

So watch out world!  Soon, we will be refreshed and rejuvenated.  And when we are both home, we will find The-Dog-That-Is-Waiting-To-Be-Our-Bestest-Furry-Friend.  (Doing a celebratory dance now, even though that 4-legged isn't here yet.  I know he will be.)

Love!

For GG & Dancing

Excuse me while I do a little follow-up on the "ducky" post for G.G. & Dancing.

What I saw yesterday:

And the car is even from the state in which I was born!

Carry On

I've got to do something so that the first post you see when you land on this blog will no longer be my colorful attempt at painting.  May that post, as fun as it was to create, move itself down a few notches and rest in peace.

I recently re-read everything I've written here.  I don't know how obvious it was to others at the time, but as I look back over the last almost 7 months, I can recognize the state of shock that Michael and I were initially experiencing after his diagnosis.

Today I no longer feel like The Woman Whose Husband Has Mantle Cell Lymphoma.  For now, MCL doesn't sneak in between my eyelids at night, and it's not hanging around me like the dirt cloud of Charlie Brown's friend, Pig-Pen.  Yes, it continues to scream for more mind time and emotional space than I think it really needs, but who am I to know how much attention something like this requires?  I'm new at this.

Michael is still feeling well.  Every day he puts many varied things into his body.  It's more than I can keep up with, and I've let go of the need to know a lot of the details, instead choosing to trust Michael and his healthcare practitioners.  That's HUGE for someone who has historically thought she was responsible for the well-being of all of her loved ones (and sometimes, the rest of the world)!!!   (The knots in my shoulders and everyone around me appreciate it, I'm sure.)

And the extra good news is that Michael has gained back more than half of the weight he lost about two months ago when things went wacky around here.  I barely mentioned the two weeks from hell fun times we had in this post but, yeah, he lost at least 18 pounds in a very short time then.  Once he got off of one thing and started to build up some other things, he began to feel healthier, and the weight started to slowly return.  He's looking good, and his energy is great.  No, wait, he's looking great and his energy is good.

Yeah, that.



Rejoice, rejoice, we have no choice but to carry on...

MCL Painting #3

It's been five months since I've done an MCL painting.  This one is titled Pure Joy and it was inspired by my friend's question of, "When was the last time you did something for the pure joy of it?" 

(This painting stuff is therapy for me, and I don't bother with the rules of shading, blending, and perspective - I just have fun.)

It's hard to tell by looking at this photo, but in addition to painting things I can easily like (including two little people on their way up the mountain), I glued on things I consider trash:  a cigarette butt I found out by the street in front of our house, part of a paper bag, some black plastic, some messy tissue, and a Starbuck's logo from one of their plastic cups.

In walking along the South Platte River in Denver on early mornings, my friend and I listen to the sound of the moving water and the sun-welcoming birds.  We see runners silhouetted against orange and yellow skies, and we see the homeless in their sleeping bags, slumbering only a few yards from comfy beds in three-quarter-million-dollar condos.  We pass perfectly green lawns and parks, and it's not long before we notice piles of beer cans next to our path.  Yesterday morning, I saw what looked like the remnants of the previous night's fast food dinner party strewn across a large set of cement stair steps leading down to the river.  (Did they hate to eat and run, but...?)  Crows and pigeons were having a heyday. 

I don't pick up the trash.  I am part of the scene of river/lawn/trash/people/path.

And I can't heal the MCL.  I am part of this scene of health/cancer/love/fear/joy.

Just Ducky

I could have also named this post "Pure Joy".  Recently, when I was feeling grinchy - perfect adjective, stolen from a good friend - another good friend asked me what I do for the pure joy of it.  Well, good friends, for the pure joy of it, I PLAYED all weekend in Snowmass with my beloved Mikey and some other good friends.

We hiked a little.

And we walked a lot - because we had to get to the Ducky Derby in Aspen!

(Don't those big lips just say, "Kiss me, you fool"?)

Happy yellow ducks in sunglasses heading for the finish line - some racing, many enjoying the sights, quite a few socializing, and some unlucky ones getting picked up and thrown up or down the river by giant two-leggeds.  

Pure Joy = Feeling my heart smiling hugely while:  watching thirty thousand yellow duckies floating down a river, AND/OR watching people enjoying thirty thousand yellow duckies floating down a river, AND/OR being in the tremendous beauty of the Colorado mountains AND/OR being with my sweet Michael, AND/OR being with good friends, AND/OR many other things too numerous to mention, AND especially while just being HERE right now.

(Photos courtesy of Mr. Mikey.)

I'm a Believer

Well, I couldn't get any of the I'm a Believer lyrics to fit what I want to say, but I'm stickin' by the title because yesterday's visit to a new oncologist made me a believer in second opinions.

Where the first oncologist that we saw in February had an office that was beautiful and homey, its parking lot vast and free, this new oncologist who asked to be called Jeff has a sterile office downtown in Hecticville where parking is survival of the fittest.

Where the first oncologist was a pretty good listener and didn't shout Michael out of his office when he heard that Michael is going to do this his own way, Jeff was an excellent listener who also didn't go into convulsions when he heard about Michael's current course of treatment.  Not only did he listen well, he asked good questions about Michael's life - to get to know him as a person.

Where the first oncologist recommended R-CHOP - acting like treatment would be no big deal -and wasn't open to conversation about an adjunct treatment our friend underwent, due to a recommendation from a well-known doctor at Stanford, Jeff gave good reason to do Hyper CVAD, followed by a stem cell transplant.  

Heavy-duty stuff, this treatment plan. 

But Jeff is willing to stay with Watch and Wait for now, since Michael is doing so well. This means that Michael will be seen every two months, in order to monitor things.

Even though there are issues of distance, parking and lack of beautiful feng shui, Jeff wins in my book.  But I might not have known how good he was if we hadn't met with the first doc and if we hadn't had these last six months to learn more and more about MCL and its treatments.  (Jeff also comes with a bit better credentials for dealing with MCL, in my humble opinion.)

I'm intentionally not linking to sites that tell of the ingredients in the treatment plans above.  Today I started reading more about Hyper CVAD, and after a few minutes, I decided that if it (or R-CHOP) was a course of action I was planning on taking, I would have to put away my computer and just dive in to the treatment, completely enveloped in trust in the doctors and All-That-Is-Bigger-Than-Me.

Last night, I told Michael what an honor it is to be traveling this road with him.  Easy for me to say, I know.  I am not the one who at this time has the diagnosis, the current regimens governing my life, and the view of potential treatments lurking up ahead. I get to have my own challenges.  And those challenges are pushing me to change and open my heart more and more.  It's very uncomfortable.  But it's kind of awe-inspiring, too.

I'm in love, oooooh, I'm a believer!
Yeah yeah yeah yeah