The Storm

Last night.  11:48 p.m.

The RUMBLINGS of agitated skies 

shook me awake.

Wind was dervishing,

torrents of water were slicing

the air, and sirens were screaming.

Not the shrill kind of sirens

that wail from fire trucks 

or ambulances, 

but the eerie kind,

like a bomb warning.

And I heard the voice of God.
(You might call it
a Public Address System.)

He (yes, I was disappointed to

realize that It was a he) may

have been telling us to take cover,

but I couldn't understand Him

over the constant RUMBLINGS.

Maybe He was sharing with us the 

meaning of life, or offering instructions

on how to become a revered teacher,

or just saying, "Hi, I love you".

But I missed it.  

Those loud RUMBLINGS

rumbled between me and

the words of God.

As I stood and pondered

in our big closet... (we have 

no basement for these things, 

only a crawl space which I imagine

is loaded with spiders, and 

I would rather die in a tornado

than live with a big, black,

hairy spider on my body), 

as I stood and pondered in 

our big closet, Michael stayed 

in bed, on his back, beneath

windows that could blow shards

of glass all over him

should a tornado rip through

the neighborhood.

(Being from the East Coast,

he doesn't have the tornado smarts

this Kansas girl holds in her cells.)

Once in a while, he would 

surface into consciousness

and I would describe the 

scene out there.  At one point,

he said this could be one way 

to take care of  the cancer.

I sat in our big closet and pondered that 

until the RUMBLINGS became

rumblings. 

Then I crawled into bed, and for the

second time since this diagnosis,

I felt pissed.  

This time, I was pissed

at cancer. 

Haola!

All is well.

Rarities

Not-Real-Fun Facts:  "They" say that Mantle Cell Lymphoma is one of the rarest non-Hodgkins lymphomas, making up 6 per cent of all non-Hodgkins lymphomas.  I read that there are only about 15,000 MCL patients in the U.S.

People in the U.S. with MCL make up about .005% of the population.

Yes, Michael has always been a rare breed.  (And I mean that in the best of ways.)

Mantle Cell Lymphoma is on the government's Office of Rare Diseases list.  This list also includes many challenging diseases with unpronounceable names, as well as Michelin tire baby syndrome.   (I have never heard of this as a certifiable disease, but everyone used to call our next-door-neighbor's chubby little one a "Michelin tire kid".  Guess I should look up names before I go calling people diseases...)

***

Last weekend, the Denver Chalk Art Festival took place on a few downtown streets.  On Sunday, we drove into town and found ourselves a parking spot, then allowed the crowds to swallow us up.  I think that more than .005% of the population of the U.S. was there!

It had rained on Saturday, washing away the artists' work, so people were at it again on Sunday, re-creating their beautiful works.  I love the stunning in-your-face reminder of impermanence that chalk art and sand mandalas allow.

The Rare Breed himself.

 Objects in this photo are all impermanent, too.  Just made with the intention of lasting longer than chalk art.

This Is Not My Beautiful Blog

Letting the days go by...

- David Byrne

I don't know what Michael would write if he were to blog about the third party (MCL) in our marriage.  There are at least 1,294 editors in the room with me most of the time when I try to write a post.  Would Michael want me to write this?  Does anyone care about that?  Is this blog only for updating about Michael's "condition"?

I have no answers.

So I muddle along, experiencing the intensity of each moment and not knowing quite how to give voice to it.

This is what MCL is like for me:  Something about MCL penetrates a good amount of my waking hours.  Everything that we eat, the vegetables we juice, the pills and capsules Michael throws down his throat (a lot!), our qigong practice, the many times a day I ask Michael how he's feeling, the way I try to take care of as much as possible around here so that Michael can focus on healing and his job...

It's a strange dance.  I don't want to put a lot of energy into this addition to our marriage. No way is it allowed to grab more attention than the loving relationship that has grown here over the years.  Yet MCL needs to be tended to.  I would not be sad if it decided that three's a crowd and it needed to go, yet I love it for the sharp reminder of the preciousness of life.

Michael and I don't talk about it a whole lot, but it hiked with us last night as we walked among the wildflowers on Green Mountain. 

It heightens my experience of love and appreciation...

 ... for Michael...

 ... for this amazing world (You can see Red Rocks Ampitheater behind the first couple of ridges)...

... and for the kaleidoscope show of life, rising, showing its brilliancy, dissolving, and rising again and again and again..

Same as it ever was.
Same as it ever was.

Ya Gotta Know When To Fold 'em

We gave it a valiant effort.  We had committed to three hours of qigong a day for a hundred days.  At first, like all new things, it was energizing.  We seemed to actually need less sleep, which was a good thing, considering how intense it is to add three hours of something to already-filled days.

By day forty, it started to become apparent to me that the intensity was not sustainable.  I realized that as much good as I was getting from the practice, there was no way I would continue doing so many hours after the hundredth day.  It was only another three days or so before it became very apparent to me that we were already at the point where the healing of this qigong was possibly being offset by the exhaustion that we were experiencing.  When one person is trying to get healthy and the other is trying to stay healthy, rest is at the top of the list of necessary activities.

It wasn't easy for us to give up our goal.  We both have streaks of perfectionism.  We're both first children, and sometimes it seems that we have points to prove.  We've gotten over all that - at least in this instance.

We don't have our new rhythm yet, but now that I don't do every qigong exercise every day, I am realizing how much good each one does for me.  I want to incorporate them all into my life - just not all of them every day.

Meanwhile, Michael has been training a new assistant for the last three or four weeks. You know what that's like - lots more work in the hopes that it will pay off in the long run.  Hopefully, it's an investment that will soon allow him to have more time to take care of himself.

Because of the things I write (or don't write), you may be thinking that Michael is not overtly trying to rid his body of the cancer.  Au contraire!  Besides doing all he can in order to build up his immune system and overall health, Michael is doing some alternative things to rid his body of cancer cells.   I will not divulge these things for a number of reasons.  But rest assured that we have read tons of information, and Michael is taking the route that makes sense to him.

I admire Michael's unwavering commitment to his health.  He has given up some of the food he enjoys, along with his couple-of-times-a-week wine, and he has added stuff that is not so enjoyable.  He has surrounded himself with a large assortment of medical people.  Every one of them is impressed with his knowledge, his understanding, and his willingness to do what he's doing.

Yesterday, I hiked and ate and talked about life with friends.  Then it rained - a blessed moment when you live in Colorado -  and my son came over for dinner.  Before the day began, I had felt like there was too much to do and here I was, taking the day off.  After a day of play and an evening of rain, I was renewed.  Today I don't mind doing all of the things that yell to be done. 

It all comes and goes, doesn't it?

I am enjoying this pedestrian crossing sign that is near our house.  Someone, somehow turned off lights in it so that the correct fingers are "folded", making it say, "I love you" in American Sign Language.  

I love you, too!!!

Wildflowers

Like a field of spring wildflowers,
thoughts and emotions the colors of
scarlet, lapis, sunshine, and restful green
appear throughout my day.

What a strange gift
this last year has been.
Almost a year now since my organ
of digesting-and-letting-go went
berserk and I released a bit of it
to the surgeon's hands.
Last night while doing practice,
with heart wide open, Buddha dog
came to visit
- he's been "gone" nine months now -
and I cried as if, again, I was
kissing his nose for the
last time.  And Sunday,
Mother's Day, my family gathered
for dinner, my brother offering
thanks from the chair my dad
has now vacated.

Every morning,
I juice a pile of vegetables
for my beloved.
Like the words and feelings that wash through me
a hundred times a day,
like the wildflowers on Green Mountain
near my childhood home,
they, too, come in brilliant colors.
All here one moment,
seemingly solid, then in an instant,
zap!
transformed into a vital,
life-giving elixir of the gods.

How is YOUR La?

With this type of qigong that we have been practicing for the last month and a half, we do a lot of Haola-ing.  According to Mingtong Gu, the qigong master, "Haola" (pronounced kind of like "How La") means, "All is well.  So be it."

We chant "Haola" a LOT while doing our qigong.

I didn't immediately take to this All-is-well-ing.  I remember reading Pollyanna books when I was young.  Michael has been diagnosed with MCL.  Haola!  All is well!

Yeah.

But things have been shifting for me.  If I take my preferences out of the picture, all IS well.  I've been doing a lot of work in this arena over the past few years, practicing to see what lies beneath my preferences.  Yeah, more than once in the past three months, I've been caught up in my desires for how I would like my life to go, and my list hasn't included MCL or any kind of health issues for me or anyone I love.  But haola!  This movie was not written by me, and I can accept it or I can whine about it.  Accepting it seems to be a much more peaceful and helpful way to be.

I am grateful for all my teachers who have helped me to realize that there is an underlying open vastness and peacefulness that is the ground of everything, despite what appears as disease and unease.  I don't always recognize it immediately, but, so far, I seem to eventually find my way back to it.

Haola!

I know that many of you who read this are doing so as a means to keep updated on how Michael is doing.  He feels well.  He has not had any more tests, so all we know is that he feels well right now.  And he has better blood than me.  (Wah! about my bloodwork.  I mean, "Haola!")

Update & Thank Yous

Every year in April, Channel 9 News hosts health fairs all over the Denver area.  A lot of screenings are available for free, and, for a small fee, people can get blood work done.  That's what Michael and I go for - the blood work.  So a couple of weeks ago, we went and got punctured.

And the results are in!   Michael's results came out as good or better than mine in every single area.  Of course these are not tests targeting the indicators that would be looked at for any changes in MCL.

Still...

I'm very happy to come out in second place.

Michael is still feeling well.  At work he is training a new assistant.  We both continue to do three hours of qigong a day, and, every once in a while, we add in a nice walk together.  I love qigong, but our walks hold some of my favorite moments.

Thank you to M.B. (Michael's boss) for your understanding and support while we wade through these times.

And thank you to M.A.J. (Michael's Aunt Jane) for all of the "thinking of you" cards.

Every act of kindness is taken in and appreciated.

Jokes4Miles

You know how you go to one website looking for something and, somehow, three hours later you find yourself reading a site with no idea how you got there?  Well, somehow I happened upon the Jokes4Miles site. 

From the site:

"Miles has been battling brain cancer for over three years, now with a fourth recurrence, he is about to undergo an autologous stem cell transplant at LA Children’s Hospital. He will be in isolation, 2,000 miles from family and friends for months, that's why his Dad is asking folks around the world to send in 5,000 JOKES that he can watch online from his hospital room."

If you are needing a laugh - or at least a grin - you can watch videos of jokes that have been submitted by clicking here.  The lady with the politically incorrect cat was my favorite.

Or you can send Miles a joke, some music, or a well wish here.  I know that some of you are good with jokes.  At least you think you are - and that counts! 

Where is my little video cam?  This is way outside of my comfort range, but I'm going to do it.  I couldn't deliver a joke on a silver platter, but I can send some well wishes.

How about you???

Lessons Learned

I wonder... if the day we heard Michael's diagnosis, were I to be handed the following sage advice, would I take it in and act on it, instead of needing to learn the hard way?

Naaaaaahhhhh...

This is what I'm learning:

1.  To the best of your ability, keep doing all of the things that fill you up.  If hiking, writing, painting, and napping (or anything else) help you to experience well-being when life is fairly easy, those things will be even more important when you are under extra stress.  It doesn't always seem like there is the time or energy for these things.  Too bad.  Just do it.  It's not optional; it's necessity.

2.  You can't make it all better, so quit trying to carry the load.

3.  Digging in the dirt changes brain chemistry.  Spend time in the garden.

Cute little baby pea plants!

4.  Less than three months after your spouse gets an MCL diagnosis (or any other heavy-duty diagnosis) is probably not the best time to try to take yourself off of hormones.  But, go for it.  But don't come cryin' to me when your body thinks that you hate it and you find yourself breaking down just thinking of old people.

5.  If someone asks you about how your spouse is doing, then proceeds to say what they think about said spouse's choices, and THEN tells you scary stories about people who have or had cancer... RUN!  Or, you can announce early on:  "I support Michael in living his life the way he sees fit (doesn't everyone want and deserve that?), and I don't care to have a conversation about his diagnosis or treatment plan, thank you very much."

And if you are in the process of going off of your hormones when above situation occurs, so your emotions plummet even more so than they would normally, just go sit in the corner and talk to yourself.  No one will even consider asking you about Michael's treatment.

6.  Surround yourself with people who love you and support you in traversing this deep, rocky jungle with courage and in wonder.

7.  Remember the wonderful things that others do - the listening, caring, food-bringing, card-sending - and do those things for others.

8.  Remember that all of life is precious.  Be here now.  And do it your way.

Life Wants To Be

Despite the fact that we did all we could do (without using chemicals) in order to kill everything growing (due to a big weed problem) in one of our flower gardens, we have lots of tulips that show their brilliant reds and yellows every spring.  A peony plant, though much smaller than it was before the massacre, still pops up and gives us one or two fluffy pink petal balls.  And then there are the weeds...

Sometimes, we can't have life grow the way we want it to, but life wants to "be", and it does a very good job of doing that. I am always in awe of its tenacity.

Right now, we have a finch nest under one of our eaves on the wall of our screened-in porch.  The finches nest there most years.  And last weekend, we went to visit the Owl Family and, after waiting for a while, we finally saw a little, white puffball with a big eye peaking out from behind mama.  I didn't think that my camera was able to capture it, but upon closer inspection, I saw the little guy, eye and all.  It's circled below.  You can click on the photo to make it bigger.  This is posted especially for D (you know who you are).  Whoohoooo!