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

It's a Family Affair

Michael's parents left yesterday.

We had fun times...

...getting caught by a giant miner...

... and checking out a few restaurants in town (This is outside of one of my favorites, the Mercury Cafe).


We also shared many bathroom jokes - only not the kind you're thinking.  More like real life, "How many broken parts can a new toilet come with?" and "How many trips to the hardware store does it take before a new toilet can be installed and working?"

The whole installation from purchase to finish... Oh, yeah, it's still not finished.  We're still waiting on a replacement tank for the new one that had a leaky defect.   Well, the partial installation from purchase to our present funky toilet, with the too-small temporary tank, was like traveling with a wild jungle safari.  We never knew what would surprise us at the next turn.

And we were even paying a professional to do the job! 

But what are families for if they can't spend a day and a half talking potty talk together.

Thank you for coming, H & W!  We love you, and it was good to have you here!

The Further Adventures Of...

... some of the luckiest people on the planet.

We weren't in the theater in Aurora when violence and its carnage hit.  We didn't have a loved one there, but we still feel so much compassion for the wounded, the friends and families of those killed and injured, and the shooter and his family. Lots of pain and confusion behind that act.

We have been through other challenging times during the past few weeks.  Michael had a strong reaction to one of the regimens that he was undergoing.  It wasn't pretty.  And it forced us to grow in ways we didn't know were waiting for us.  In the end it was a net plus, but boy was it a challenge for a while.

This morning we got the results of Michael's recent blood work and CT scan.

Drum roll please.

Blood results:  Normal
CT scan:  Lymph nodes that were previously reviewed are now slightly smaller in size.  No areas of swelling or enlargement seen.

We could draw the conclusion that the things Michael has been doing* have not only kept the MCL from growing and spreading, but they have also been effective in slightly reducing the MCL.  I like that idea, and it may be 100% true, but we can't completely know what the cancer cells are up to.

Because Michael has stopped the regimen that knocked him on his physical and spiritual butt, he has possibly lost the "alternative" treatment that affected the MCL the most.

I don't know what comes next.  I am not in charge here.  Sometimes I'm even okay with that.



*If you or a friend of yours has cancer and you want information about the various protocols Michael has been following, you can contact me at http://www.carolforpeace.com/contact.html

Vast and Amazing

"Vast and amazing," an illustration by London-based artist Freya

7-14-2012

Dear Mikey,

Today at the healing circle where I and six others did what we could to bring healing to your body and soul, I realized how beautifully you are allowing yourself to receive.  That kind of stuff is a challenge for me.  I have never liked being the center of attention.  I don't think you have, either, but you are now allowing it, and it is a privilege to be here to witness your grace and your ability to be vulnerable.

You mentioned that you don't like that I continue to be in second place, that all the attention and energy goes to you.  First, I don't think that's true. I am surrounded by love.  Secondly, I want to thank you for allowing me to take this journey with you.  I am happy at the way that we are both learning and growing.  You may argue with me about this, but you are my teacher.

This isn't easy for either of us, but wherever this takes us, we're up for it.  And we're not alone.


Haola!

I love you,

Sweet Pea

And Many Times Looking Cross-eyed

Michael J. Fox, in his book, Always Looking Up, writes this regarding Parkinson's Disease:  "You suffer the blow, but capitalize on the opportunity left upon its wake."

For me, the opportunities "left upon the wake" of Michael's diagnosis are numerous and profound.


And still, I often have no clue about any of this.


A short list of the opportunities I have noticed:

• The flexibility to be able to fix one kind of food for a period of time, only to have to give it away or eat it all myself because NOW this kind of food is what is required.  Then, in a couple of days (if we're lucky) to throw that food out, because it isn't working so well. (An opportunity to open a soup kitchen where I can serve the food that, yesterday, we thought was ours?)

Some days, garden carrots with penises are okay.  Some days, they're not. 
(I can understand that.)  

• To face in real time - not just as a hypothetical idea - that there are few things that we truly "know" in life.  (Definitely NOT a good time to consider a career as a politician.)

• Realizing that it's not just Michael who needs a support team.  I do, too.  (An opportunity to let go of my hermit-like ways.  Damn it.)

I don't even know how to write about many of the changes that MCL is leaving in its wake.  MCL feels like a roto-rooter, cleaning out all of the methods I've historically used to function in the world.  Now, it's about just placing one foot in front of the other. It doesn't feel like there is always ground to receive that step, but there seems to be something kind and compassionate, huge and spacious that let's me know it's okay to let go into this free fall.