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.
Tuesday, April 24, 2012
Wednesday, April 18, 2012
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
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
Monday, April 16, 2012
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.
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!"
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!"
Friday, April 13, 2012
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:
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!
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.
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!
Tuesday, April 10, 2012
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".
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".
Sunday, April 8, 2012
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.
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:
Big Love to YOU!
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.
proportion to the clarity of his heart.
Big Love to YOU!
Thursday, April 5, 2012
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.
Sunday, April 1, 2012
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....
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....
Thursday, March 29, 2012
Standing On My Head
The world turned upside down the day Michael received this diagnosis. Funny how that works. As if any of us can escape this world unscathed. But until this diagnosis, I guess I had some belief that it would be me who would be the first to have some life-changing physical adventure. So in addition to the shock of the diagnosis, I was thrown out of kilter by the loss of my skewed view of the world. What a gift!
Now we are in California. Tomorrow, we begin a five day qigong healing retreat. From what I've read about this retreat, it is not a vacation - it's work. And it will be most beneficial if we let our world turn upside down. Over and over.
What if healing can be found in ways we have never entertained? Even though I have never been much of a mainstream type of person, just like with my belief that Michael was invincible, I still seem to carry a barely buried belief that if he would just go through chemo, he would live a long and healthy happy ever after. Can I shake that belief and accept that there are healing methods which have helped people for thousands of years and which just might change my life and the life of my sweet hubby? I don't know how these things can help unless we open ourselves to them.
Now we are in California. Tomorrow, we begin a five day qigong healing retreat. From what I've read about this retreat, it is not a vacation - it's work. And it will be most beneficial if we let our world turn upside down. Over and over.
What if healing can be found in ways we have never entertained? Even though I have never been much of a mainstream type of person, just like with my belief that Michael was invincible, I still seem to carry a barely buried belief that if he would just go through chemo, he would live a long and healthy happy ever after. Can I shake that belief and accept that there are healing methods which have helped people for thousands of years and which just might change my life and the life of my sweet hubby? I don't know how these things can help unless we open ourselves to them.
Thursday, March 22, 2012
MCL Painting #2...
... A Work In Progress
Michael is finally done with all of his dental work. The poor guy is still feeling beat up from that. He's cured me of wanting to get my mouth redone any time soon.
Since my dad died two weeks ago, I have felt beat up in ways that have nothing to do with dentists. It hasn't been completely about my dad's death; it's about feeling like there sure is a lot of challenging stuff piling up around here. This brain and gut have been wandering around in dark caves - especially in the middle of the night - and life hasn't looked too wondrous. Had a tiny peek of light shine through during a phone conversation with a friend today. All it takes is a sliver of light and we can no longer deny its existence.
For my second MCL painting, I had fun blobbing on purple and green. Today I added quotes that remind me of strength and perspective and love. There is room to add more wise words as they find their way to me.
If you have any suggestion for good quotes that can remind us of our true nature or that give you strength in times of challenge, feel free to suggest them here or in an email. If your quote is picked, you will be entered into a drawing where you might win a big THANK YOU from me.*
The blobs:
And a couple of close-ups:
*Must be present to win.
Michael is finally done with all of his dental work. The poor guy is still feeling beat up from that. He's cured me of wanting to get my mouth redone any time soon.
Since my dad died two weeks ago, I have felt beat up in ways that have nothing to do with dentists. It hasn't been completely about my dad's death; it's about feeling like there sure is a lot of challenging stuff piling up around here. This brain and gut have been wandering around in dark caves - especially in the middle of the night - and life hasn't looked too wondrous. Had a tiny peek of light shine through during a phone conversation with a friend today. All it takes is a sliver of light and we can no longer deny its existence.
For my second MCL painting, I had fun blobbing on purple and green. Today I added quotes that remind me of strength and perspective and love. There is room to add more wise words as they find their way to me.
If you have any suggestion for good quotes that can remind us of our true nature or that give you strength in times of challenge, feel free to suggest them here or in an email. If your quote is picked, you will be entered into a drawing where you might win a big THANK YOU from me.*
The blobs:
And a couple of close-ups:
*Must be present to win.
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