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!

And Sometimes, It Just Sucks

Nothing has changed (that I know of).  Michael still feels great.

There are moments and, sometimes, even a whole day, when I just think that this whole thing sucks.

Everything changes.  In a few moments, I'll be happy thinking about the peas popping up in the garden or the baby birds getting fed outside our screened-in-porch or just the fact that life is so incredibly amazing.

Opportunities

One of the many side effects of cancer (and many other things in life) is a profound paradigm shift.

Having mixed feelings about these paradigm shifts that are coming our way - and the way of millions of people. The good side: Among other things, love and growth like I've never known before. On the bleh side: Well, there are a lot of things on the bleh side - almost as many as on the good side. This article states one not-so-wonderful part (pardon the f-bombs): When life hands you cancer, make cancer-ade: via lemonade stand, 6yo boy raises $10K for dad's chemo

If This Isn't Nice...

I hope that people reading this blog don't assume that just because Michael hasn't embarked on chemo and is working with "alternative" healing methods, that I (we) are against chemo for those who wish to utilize it for their healing from cancer.  I am continuously reading lymphoma support forums where it appears that everyone on the list is undergoing chemo.  A friend of a friend has undergone chemo and a stem cell transplant for mantle cell, and he is now fine and back at work.  Another friend did about a year of chemo and radiation, and his recent 6-month PET scan was clear.  I can't speak for Michael, but I know that I have no need to be right about how to best deal with this type of cancer.  It is a great mystery to me.  Every person has his/her own journey in this life and his/her own priorities, and since I try to stay aware enough to allow my own journey to unfold, I don't have the time to try to figure out the path of others.

It is all good.

And I'm  trying to avoid being a "newly-born again qigong-ist", continually spouting off how amazing qigong is, even though our practice is continuing to be a challenging, fun, wonderful, healing experience for me.  Just a few words here, then I'll shut up about it for the rest of the day.

Michael in the qi field

Today, while doing an exercise, I raised my arms up at a 45-degree angle, and for the first time since my shoulder surgery in 2008, my joint didn't do its usual deep and disconcerting "CLUNK".  Will it clunk again tomorrow?  What does shoulder clunking (or lack thereof) have to do with cancer? 

I don't know.

But this practice is doing more than healing a shoulder and, hopefully, healing a cancer diagnosis.  It is a physical, spiritual, mental practice that Michael and I do together for at least two hours a day.  That is a blessed gift.  No matter where this cancer diagnosis takes us, we have these beautiful moments of growth and connection with each other right now.

As Kurt Vonnegut's uncle often declared, "If this isn't nice, I don't know what is!"

Mantle Cell Chemo

It's interesting that, while Michael was undergoing his initial testing, the doctor, unbeknownst to us, sent blood to an OUT OF NETWORK LAB for almost $6000 worth of tests.  Out of network means out of our pockets.  (Stay tuned - we don't know how this story will play out.)

What's more interesting than the $6000 charge is the fact that, after spending so much of our money, the oncologist came up with the standard treatment that anyone can easily read about just by searching for mantle cell lymphoma treatment.  Instead of ordering up the blood tests, I sure wish the doctor would have just asked me what chemo protocol to recommend.  I would have come off looking really smart - and I could have given a discount and still charged $4000 for it.

The usual treatment for mantle cell lymphoma is called R-CHOP.  Here are the ingredients:

• Rituximab (Rituxan), one of a special group of drugs called ‘monoclonal antibodies’. It attaches itself to a special molecule called CD20 that is present on the surface of B-cells. It is the B-cells that become cancerous in many lymphomas. By attaching to this molecule, Rituximab inactivates the cancer cells and eliminates them. As it binds only to a very specific molecule present on B-cells only, Rituximab produces no ill effects on normal cells in the body.
• Cyclophosphamide, an alkylating agent which damages DNA by binding to it and causing cross-links
• Hydroxydaunorubicin (also called doxorubicin or Adriamycin), an intercalating agent which damages DNA by inserting itself between DNA bases
• Oncovin (vincristine), which prevents cells from duplicating by binding to the protein tubulin
• Prednisone or prednisolone, which are corticosteroids. 

The drug that interests me the most is the Rituxan, since it targets a specific molecule and doesn't harm the rest of the system.  Still, it's not a happy drug.  Most people have reactions to it, so the people who administer it have to go very slowly, especially the first time, while watching for any reactions.

After reading different stories about this protocol, I know that many people will also end up having a stem cell transplant at some point.

I am hoping that Michael will get a second and third opinion from different doctors.  For a number of reasons, we are not feeling committed to the oncologist that Michael first saw.  One, he told Michael that he answers emails - even has his email address on his business card - but he has not answered the two emails Michael sent him regarding the $6000 charge.  Two, he seems to have a lot of experience with chemo, but he is not impressive when it comes to the whole picture.  Example:  Literature that we have read and the oncologist that we consulted in Boulder both say that exercise every day is a must, but Michael's oncologist just said, "Sure. You can exercise."  Does he care about the patient's health or does he just administer chemo drugs?

Michael still wants to avoid chemo, but the way things are set up in this system, I think we need an oncologist in order to monitor the disease (I hesitate to call this a "disease" when Michael feels so disease-free).

Day nine of our home gigong practice and it's only getting better!

Ahem...

I've been readin'
cuz we've been needin'
to know if it's possible
or maybe even probable
to liberate, eradicate, incapacitate,
not collaborate
these wayward cells.
No death knell
to Michael's health.

In addition to studies,
done by their buddies
and paid for by the profiteers,
we're lookin'  past marketeers
to find pioneers
who don't destroy for dough
but instead will sow
good health now and tomorrow.

Studies show
that pot can throw
MCL through the window.
We've just got to know
the way to go
to inject some cannabis -
this is not beyond us.
God's perfect plant
is holier than man's.
And the payment
makes more sense.

I just wanna see
the day when universities
change their pedagogy
to lookin' at our ecology
to fix the source,
not nail the force
of life within us
in order to find "health".

It's Not All Roses

Day four of doing THREE hours of qigong a day.  I do like it, even though it's not easy.  And I have an aversion to sweating.  Gotta get over that.

Michael is amazingly healthy for someone who is supposed to have this diagnosis he was offered.  An hour and a half of qigong so far today, then physical work in the garden.  He's a beast, I tell ya!

Me...  not so much.  The pain from the scoliosis in my back is still gone.  BUT in it's place, I have been feeling like my lower vertebrae got fused.  Like I'm walking with a stick up my ...   It seems to be letting up some today, though.  It makes sense to expect that once you mess with one part of the body, all attached parts are going to say, "What the heck?  What happened to the status quo?"  And in qigong, it would be said that this is just another area of blocked energy which will be freed up as I continue to open it up.  I am honestly excited to see how this all moves out.

Today is not only Easter, but it's the two month anniversary of Michael's diagnosis and the one month anniversary of my dad's death.  Had a good cry over all of that last night.  So healing to put my hands in dirt today while planting seeds that will bring new life.

Some chives and a lot of potential

I have three books on my desk that Michael has asked me to read so that I can submit a book report on them.  They are all books on cancer.  If I find good stuff, maybe I'll share some of it here.  At some point, I also plan to write about the standard chemo treatment for this kind of cancer.

I don't know how I want to end this post.  Michael says, "Let's eat dinner and you'll figure it out."  I know better.  After dinner, we have another hour and a half of qigong to do in order to get our three hours in for the day.  It's now or never.

I'll end with a beautiful Rumi quote:

Everyone sees the unseen in
proportion to the clarity of his heart.

Big Love to YOU!

It Does Get Better (And Better)

The five retreat days we just took part in definitely belong in the top tier of my life experiences as far as inspiration, hope, sweat, support, love, and wonderfulness go.

Michael and I spent about fifteen minutes of the five days outside.  Literally.  We ate, slept, and practiced qigong in one building, and our time was very filled up from 7 a.m. until after 9 p.m.  But even though we were busy inside, I could hear the frogs croaking outside our windows.  By their sound, I would guess that there must have been at least 1,495,268 of them out there.

I am not exaggerating when I say this experience was life-changing (but I think that I was exaggerating a little when I mentioned the frog count).  The last two months, since the MCL diagnosis and since Dad died, have sort of been like walking around outside at night while wearing sunglasses.  Even when my heart was open and I felt powerful depths of peace and love, The Shadow was usually lurking.  Once we started the retreat, I don't know where that shadow went, but it seems to be gone.  Maybe it never existed except in my imagination.  I don't go to impending gloom and grief lately because I see a bigger picture.  The sunglasses are removed, the sun is shining.  Right now, everything is alive.

No matter what happens - if Michael does or doesn't do chemo - he (we) are empowered to do much healing on all levels.

We are not our diagnoses.

(And the pain I get from the scoliosis in my back may have left with The Shadow.  After the second day of the retreat, I quit feeling it, even though I was doing the very things that usually cause it to yell louder than a mad, little kid.)

The two photos I took in California - taken with my cell phone and doctored with technology:

Were the frogs hiding in these beautiful flowers?

Oh, yeah.  Oranges come from trees, not from grocery stores. 

I Thought I Was Coming Here For Michael

Silly me...

Truly, when Michael said he wanted to do this qigong healing retreat, I agreed to come so that I could  support him.

This is profound.

If mainstream medicine would include this, we could be whole - whether we ended up ridding ourselves of our diagnosis or not.

There are many people around me who have diagnoses that are scary to most of us.  Everyone here is VERY alive.

There is so much more to healing than we realize....