Monday, October 31, 2011

What grows in your garden?

You are not alive because you are breathing, you are not alive just because your heart is beating.
You are alive only in the proportion that you are aware.

It has been a sweetly awareness expanding few days.
Two days ago I noticed that apropos of nothing, I was in deep presence with the most mundane things as I was doing them. I was a radiant state of happiness just ironing, and that the sun streaming through the windows was gorgeous; and then the observing that escalated my happiness up another few notches.
I wondered, briefly, if some deepening level of appreciation of life due this slight little air kiss with mortality, is seeping into my cells, replicating with each nanosecond...

Yesterday there were a number of interesting notices about how death, or the realization of, strips the fog from our inner atmosphere.
I read on a blog which I follow that a woman who had had a reoccurance of her breast cancer had died.
All of the comments were so life-affirming and wished her Godspeed.
I smiled at the sweet force of a life that brought out joy in knowing her, rather than a dread of the shared inevitable journey beyond.

I read the eulogy that Steve Jobs' sister delivered at his memorial.
If you haven't read it, I most heartfully encourage you to Google it and read.
What a wonderful perspective to hold of this amazing being and his entire life journey, and his last words brought tears of joy to my eyes.

Last night I watched a documentary that my brother called me out to see: "The Education of Dee Dee Ricks", which I also highly recommend.
A journey of a woman who began it as a self indulgent multi-millionaire, who was diagnosed with breast cancer, whose life intersects with an uninsured contract worker who was also diagnosed with breast cancer.
The transformation in both women is truly like watching a birth: messy, full of pain, and glorious.

And then, today.
Three years ago (in 10 hours and 48 minutes) my son, my only child, went on to do The Next Thing.
His passing was dramatic to observe as a story, but painless to receive, so, ultimately, I have no complaints.
I am not experiencing any trauma today, or even sadness, simply a sweet nostalgia at the amazing, complex and beautiful life he manifested.
I am more abundantly enriched than I could ever communicate by being able to share the walk with him.

All of these reminders. All of them blossoming in beauty.
We are here to live as fully as we can for as long as we travel here.
Just love, appreciate, and when we (as, of course, we will) forget all of that completely, and are wallowing, with or without cause, to let it go as soon as we can.
Like the woman disappearing from the magician's table; gone without a trace.

My visit with the plastic surgeon was uneventful this morning.
I finished 41 days and nights (longer than Jesus in the desert!) on antibiotics just last evening.
He was pleased with the appearance of my breast, scarrishly discolored, but not inflamed with infection.
He sent me home to watch it intently, at the ready to request more meds if infection began creeping back in, otherwise I see him in two weeks for the next fill in the expander.

Life continues its pace anon; I am working pain free, having lunch today with my beloved niece, who is moving tomorrow to beginning massage school in another (awesome) city, and dinner in two nights with some dear friends before they head off to nirvana (in the form of the International Quilt Festival in Houston) this weekend.
What a lovely bouquet of a week!!

A warrior knows that he is waiting and knows also what he is waiting for.
The ultimate accomplishment of a warrior is joy.
~~Carlos Castaneda~~

Tuesday, October 25, 2011

In praise of fermented probiotic drinks and the whole darn journey

The day after my last post my body went down for the count from the antibiotics. Today is day 36, including of course, the 9 rounds of the IV antibiotics, and though I have been incredibly generous with feeding my body mega probiotics throughout, five days ago my body just laid down.
After sleeping for 10 hours a night, on average, I was still so exhausted that I could barely function.
My whole body felt weak and woozy, my belly was upset, I was moody & I was just a misearble camper altogether.

Any panic was somewhat abated by the fact that on that same day I also saw a significant change in the cellulitis.
But, honestly, I began to feel like my choices were becoming die of the cellulitis or die of the antibiotics...
Which isn't the cheeriest of messages for friends, but that's what I was saying to people in my discouragement.

I made it through the weekend, gingerly, and saw the plastic surgeon yesterday. (more on that in a moment)
My big biologic revelation of the day was that I had 32 oz. of kombucha in the middle of the day & my belly was normal, my mood improved, and I stayed up late last night talking with a friend on the phone without morphing into a blob of inactivity!!
(Had I only done what I had planned during my month off, and started brewing my own again...But I shall contribute to the recovery of the American economy by purchasing large amounts of that miracle liquid!!

On another note, just between you and I, the cellulitis has done an interesting cosmetic dance with that left breast and the expander.
I am grateful for the honestly fascinated little kid aspect of me, that just looks at the odd shapes the scarring has created after the inflammation, & the once creamy, now purple, line of the scar with fascination.
I don't  have an emotional reaction to the visual, and in fact, in its own strange way, I find it beautiful!
The plastic surgeon is non-plussed. He says that he will be able to even all of that out when we do the surgery, and that it will look normal. (Really??? Ok. Whatever.)
Meanwhile, this is a (to me) cool part of the path, so I have a friend who is a photographer coming over later this week to take my own personal SCAR Project-like photograph.

And yes, it will go in a frame.
Happily, I might add.

Thursday, October 20, 2011

A moderately sized rant about selling out

To backtrack a little bit as a preface: A year ago I read an article about how the Susan G. Komen Foundation had lost their moral compass and was selling out, as a corporation and a "brand" to forward its message, at the expense of women with cancer.
That stuck with me and I have been a bit leery about all the pinkness surrounding breast cancer ever since...

About six weeks ago I was on FaceBook at 1:00 a.m. when traffic is very light, and happened across a conversation about the Komen Foundation's president (Susan G. Komen's sister, who started it) being on the Home Shopping Network (???) hawking the latest "pink" product, a perfume.
The women having this conversation are the heavy hitters when it comes to survival & breast cancer, women who have been in treatment (chemo, radiation, surgery, rinse and repeat) for FIVE YEARS, and were just now able to have their reconstructions done.
They were beyond livid for a number of reasons.
Their first outrage was as chemo survivors, they talked about your taste (everything tastes like metal at one point) and smell (*everything* is foul-smelling, even the most innocuous of scents) are so profoundly compromised, that it felt like a personal insult to be selling perfume, ostensibly on their behalf.
Secondly, one woman did the due diligence and found out that though the perfume was selling for $57.00 a bottle, only $1.11 of that went toward research.
Less than two percent.

The hostess of the conversation said "Why don't we rename the perfume. Any suggestions?
In fifteen minutes over thirty "new names" had been suggested.
I think that for me five years ago, and for most people, it would have been absolutely meaningless, but during 2007 I nursed my fiance from diagnosis unto death, through chemo, hospitalizations, drugs for side effects, radiation, drugs for side effects, surgery and CyberKnife (a super duper radiation treatment) and in reading their conversation, all of those names of drugs and treatments came flooding back in.
I was practically rolling on the floor laughing as these women riffed on all of these names, tweaking them slightly to "rename" the perfume, and I realized "Holy crap. I'm on the inside track of cancer humor!"

I immediately friended the hostess and a number of her friends, as well.
It has been a great gift, and very humbling, to follow their ups and downs, their surgeries, reoccurances, and always their fierce, in your face, take no prisoners and offer up no apologies approaches to staying alive and thriving, with each others' support, even when they are flat on their backs.
Though my journey with cancer is like a mild cold in comparison, I am proud to be in a tribe with such strong and brilliant beings.

So. With October being "Breast Cancer Awareness" month I have been much more attuned to the conversations from withinh the breast cancer community, which oddly (or not) are never heard by the greater collective.
Most breast cancer survivors are conflicted, as the Komen Foundation has, indeed, done great things for women in treatment and for awareness regarding screening.
That said, screening only goes so far. Why are the dollars not going toward research regarding metastatic breast cancer??
That is, after all, what kills.
Why is the Komen Foundation plainly putting its corporate attention on furthering its "brand recognition" rather than on the true elimination of not only the disease(s) of breast cancer, but on education regarding *prevention* of breast cancer??
It's not all just self exams & mammograms.
It's nutrition, exercise, and from my perspective (though a corporation would never go public with this) regular detoxification, and non-exposure to estrogenic (read breast cancer enhancing substances) in false scents (including perfumes!!), plastics, BPA etc.

And, (after all this) the real thrust of my post today: the commercialization and sexualization of breast cancer.
Hard to conceive of, perhaps, but more and more prevalent.
Take a detour and go over to and read the Oct. 17, 2011 post.

Those pictures, posters, T-shirts are an outrage.
What do images of perky, perfect breasts a la Victoria's Secret have to do with the reality of breast cancer?
It is not, not, NOT "all about the boobies"!
It is all about my life and the lives of tens of thousands of women each year.
With or without "boobies" and/or with "boobies" that aren't going to go in some fantasy.

You want to know the real deal?

Breast cancer is not perky women lookin' hot at the camera.
It is exhaustion and puking, being irradiated (think a contrlled Hiroshima) and scarred.
I got off light, in the scheme of things, but because of this recent round of cellulitis, and the attendant scarring to the expander, I may or, very probably, may not have a "normal looking" breast at the end of the day.
I don't give a tinker's damn about that, either.
If you'll remember, at the beginning of this road, I was prepared to live with a flat expanse of skin, so whatever it ends up being: smaller, curled & dimpled, oddly colored, whatever, I give the hand under my chin gesture to any unexamined idea or advertising campaign by Komen that this body is any way "less than" the bodies of their models.

Not that I ever have, but I will never buy pink candy, pink ribbon dog treats, pink ribbon garbage bags or pink anything else. Ever.
Because until they get serious about metastatic breast cancer research and breast cancer prevention they are shilling the public, and misrepresenting the survivors.
And I go on the record as such.

Monday, October 17, 2011

Going to a used car salesman who tells you not to buy a car.

Fair warning, this is going to be one of those posts full of technical info...In the best of all possible ways!
I saw the radiologist this morning, and after a very comprehensive intake and exam he said that in his professional opinion I am not a candidate for radiation.

Well, yahho! But why??
Remember my three choices? The first being do nothing, with a 25% chance of reoccurrance?
Well, as it turns out, not so much.
That statistic (which, unfortunately, is being bandied about in oncology and surgical offices across the country) is based on ONE study.
Oh, wait it gets better.
It was one study done retroactively.
As he explained, most clinical studies are set up so they decide what they are looking for regarding the efficacy of some treatment, and what population they need to study to get the clearest results.
So they would then solicit doctors to find, let's say, 1,000 women in that category. 500 would receive the treatment they are investigating and 500 would receive a placebo (just keep this in mind if you are ever given the opportunity to participate in a clinical trial).
The 1,000 patients are then closely followed during the treatment and for 10 years afterwards.
A decade.
And based on all of that data they can see if a treatment protocol has actual benefit or not.
But this study was done retroactively: they decided what results they were interested in, took a number of cases from the files, separated them out into different groups and drew their conclusions.
Pretty odd way to do research, eh?

(Breaking into my late night infomercial voice)
But, wait! It gets better!!

The study, which he actually went and made a copy of, for me, was done with 574 women with DCIS and mastectomies.
Of those only 80 were found to have very close margins, like I have.
Of those 80, only 45 had comedonecrosis. (the form of DCIS I presented with)
Of those 45 only 16 were in the same statistical group as I am: under 60 and post menopausal. (The endocrine input is vital to all types of breast cancer, even DCIS depending on the type.) we are down to a study consisting of 16 women??

Yes, and of those 16 women, who did not receive radiation, 4 had a reoccurance.

As he said, yes 4 out of 16 is 25%, but in his professional opinion as a physician who also takes part in research, he is not convinced that were those numbers expanded out to 100, that 25 women would have had a reoccurance.
Especially since in research .5% is considered statistically significant
(Which strikes me as odd. Half a percent is statistically significant?? Well, ok...)
But of those 16 the statistics were only .3.
His words? "This has no valid clinical significance. I see no medical reason to treat you with radiation."

Which also means that I am also not really a candidate for further surgical intervention either!
*doing the Snoopy dance!*

Now, to get this cellulitis healed, and continue to clean up my diet and life.
And just live.
No worries, mate!

Saturday, October 15, 2011

I seek a symphony of magic wands, by the way

Goodness gracious, 3-D Land is interesting!!
I've been butt-planted in this hospital bed for the greater part of  87 hours. (Yes, I did the math, all for you, my preciouses!)
I have had 9 rounds of IV antibiotics in a protocol of 4 hours on, 4 hours off, they added in oral antibiotics half way through, which after my last IV last night, was doubled to two oral antibiotics.
Needless to say, the probiotics I brought with me are getting good use & I am greatly looking forward to the quart jar of homemade raw milk yogurt in my fridge at home!

The cellulitis is "better" but still pretty prevalent...discoloration, hardening, still somewhat painful...but the medical reality is that for the moment, all that can be accomplished with a hospital stay has been done.
I am seeing radiology for the initial consult on Monday, but plainly, nothing will be persued until the tissue is normalized.
In a week I check back in with my plastic surgeon to see what he/ I/ we think of my progress, and I start back to work on Tuesday.

The weather outside is evidentally beautiful, cooling off, clear and sunny.
I am looking forward to sitting out on the back deck, watching my girls and a boy romp about wildly.
I am looking forward to working on my recovery quilt, to sleeping in my own bed, and, though the hospital food has actually not been bad, to eating my own food.

I am not going to worry about what is going to happen, what might happen, what has happened.
That is all the noise of Charlie Brown's teacher at this moment.
I am looking forward to daily life again.

Let us all set ourselves free from reaction to our circumstances & just find appreciation for the freedoms we do have access to.
*waving my magic wand over all our heads*

Tuesday, October 11, 2011

Do not pass go...

For the last few days, despite the fact that I have been on antibiotics since September 20th,my breast has gone from pink to dark pink to red to burgundy, &, as of this morning, with a tad bit of swelling.
And, yes, I *have* been checking in with doctors, but the concensus was very vanilla.
Until today.

I called the plastic surgeon & said in no uncertain terms that I needed to be seen, which they were very good about. (Again.)
My doctor was at the hospital, but they had his colleague see me, & the nurse came in & took it upon herself to e-mail him photos of my autumn-colored anatomy.
Which brought him back from the hospital for a personal exam.

Long story short, I am going in the hospital for 1-3 days to receive IV antibiotics, as this is the beginnings of cellulitis~~a type of inflammation/ infection that can become very painful & hard to deal with.
We discussed my upcoming radiology experience (which of course, I had to reschedule) and the whole landscape has shifted like a snowbank.

At some point, after the cellulitis is under control, I will do the whole radiation protocol.
As I've mentioned, the usual way of dealing with this is to do a mastectomy, have the radiation, wait for six months, so the tissue can settle down, before doing any kind of reconstruction.
My plastic surgeon said that it is not a problem to have radiation with the expander in place (which, truth be told, I am rather grateful for) and/ but it will create a great deal of scarring into the tissue around the expander.
I asked if it would create so much scarring that getting it out would be a problem, and (I just love this guy!) he said "Oh. It will be a little difficult, but I've done it before. That is not a problem."
What, evidentally, is the problem is that after removing the expander & cleaning up the scar tissue, the capsule that the implant was supposed to fit in will be too compromised to comfortably hold an implant.

So we had our original "what are my options, doc?" discussion part deaux.
Again I declined a lat flap or a TRAM flap (using parts of my latissimus dorsi or my transversus abdominus, core muscles which I need for my work) sooooo *drum roll* we are back to the only option available, which is the belly fat transplant. (He had a better name for it, but that has slid off the teflon surface of my brain, that was busy processing timelines, like a perfect sunny side up!)
Yes, the long surgery, with a longish hospital stay, BUT! I will end up with a breast composed of my own tissue that should have a very real/ natural breast-y look to it.
And my Rubenesque stomach will be less so. Maybe almost flattish...
Ok. Not really going to complain about that, I must admit.

The time line for that surgery will be in the early summer of 2012. Six clean and clear months after the radiation ends.
All in all, though this is more complex than the original expectation, this is really such an easy journey as far as breast cancer goes, that I have not one single bitchy word to say.

I am waiting for the hospital to call me with my room number, so I am going to go pack now.
And then (looking right & looking left) if I still have some time, I am going to go sew some quilt blocks!!!

Oh, come on! You know you would, too!!!

Friday, October 7, 2011

Batta, batta,SWING batta!!

Like baseball, you never know where the next pitch in life will be coming from...
This week I have been very lethargic (doing nothing really does take it out of ya!!) & on Wednesday I was sitting at the computer when the phone rang. It was the breast surgeon's office, who "wanted to see me right away".
So, I spent three hours imaging all scenarios that they might be calling me in for, working out my responses to each one, & just resting, centering, letting go.
By the time I was walking in, I was prepared for any old thing that cancerland might have to offer up on a platter.

The facility I am being treated at is a huge complex, housing all kinds of oncologists in different specialties; 6 floors in a huge, spread out building, that has a huge hospital that is its affiliate as well.
They know what they are doing and have been doing it a long time.
Part of their protocol is that every week they have a Tumor Board (yes, yes) that meets.
They all review each others' cases, so you have the benefit of a second, third and fifteenth opinion.

The Tumor Board decided that they weren't comfortable with the margins on one side of the mastectomy.
That is the area past the affected tissue that is definitely unaffected. They want good margins (healthy tissue) to have a gap, as it were, so that there is no chance of a possible spreading.
One one side I had 5 cm. clearance (that is great), on two sides I had 1 cm. clearance (acceptable), and on one side I had a squeaky little 0.1 cm clearance.
En masse, they did not feel comfortable with that.

My surgeon said I had three choices:
One: do nothing, recognizing that I have a 25% chance of a reoccurance if indeed, there are any cells left.
Mmmm. I might be willing to roll the dice for 10%, but a 1/4 chance just feels too high.
So that one is off the deck.
Choice two is to redo the surgery.
Excuse' moi, but that would be such a hot mess: take out the expander, remove more tissue and skin, sew me back up, put in a new expander with whatever I could safely have in my body.
Maybe another 4 days in the hospital, reacting to anesthesia, and four more weeks off, recuperating.
All of this before the planned second (which in this scenario, would be the third) surgery.
Not so excellent crazy about that option.
And behind door #3, Monty??
So, I have my hesitations about tissue health, as radiation is intense therapy: the average protocol is 5 days a week for 5 weeks.
But, of the three, it is the only choice that feels comfortable to me and my sweet body.
(Yes, I actually do ask for its feedback on these things.)

I meet  with my radiation oncologist on Wednesday, at which point we will, I am sure, set my schedule.
In preparation, I have doubled up on whole foods nutrient supplements that I do, plus more vitamin C (I've done 3,000 mg. a day for decades, but I can use even more of healthy collagen production capacity now), more vitamin E (bumping from 400 IU to 800). I already have an experience with amazing wound healing, from earlier in my life, with vit. E, so I know that will be a great thing.
And in addition, my acupuncturist has given me a healing salve to put on every day after radiation & an internal supplement that will help the body download the heat & heal, while receiving the benefits of the radiation.

Put me in coach; I've got my lucky bat and I am feeling strong.

Tuesday, October 4, 2011

Aces high, buddy.

I am always so amazed that we humans seem to be learning & relearning the same basic 3 or 4 dozen life lessons over & over again...Seven billion personal spins on the life processes that every living human encounters...

This little jaunt with unwittingly overdoing it, having to do some backtracking mentally, regarding my expectations of healing, and some extra care from my friends in the holistic healing community, have brought me back to the same holy grail of realization as most before me: life can change directions at any moment and one of those changes in direction will read "The End".
Humorous & heartrending that we all "know" that, yet none of us know that until mortality whispers sweet nothings into our distracted ear.
Not being able to just jump back into my life at will, brought up for me just how close I was to a chapter that would have had a scrolled "Finis" after the last sentence.
Like all of those before me, I have been asking the questions we all would benefit from asking before the tall guy with the sickle arrives whistling a happy tune:
What would I be doing differently if I knew...

It is a good season, literally, to be asking these questions.
It is a long-running joke among all who know me, just how exceptionally calendar oriented I am.
I plan things on a very long time line so as to make room for many, many things.
By this point in the year I have my next year's calendar set in beautifully polished stone. My days off are chosen, seminars to teach or take already penned in, yearly events, such as when to attend the Quilt Festival and Renaissance Faire are set, usually with hotel reservations already made, as well. Birthdays, anniversaries, monthly meetings, neighborhood holiday get-togethers, all on the H.C. (Holy Calendar).
I do this for myself, but also for my clients, so those who wish to book ahead, to have standing appointments, can choose their times with confidence.
The H.C. for next year is in my home, ready to be formatted.

So. What *would* I be doing differently if I knew...?
I'd be doing more art. more quilting, I would actually have a regular physical activity ("exercise") that I enjoyed.
I know. It sounds so very basic, but I have for lo, these many decades of my career, pencilled in everything I just mentioned, and if _____ then I would do those essential life activities for myself.
If: I wasn't too tired, something else came up, yada yada yada.
So American.
So silly.

This week as I unwrap the 2012 H.C. I will sit in silent contemplation of my life first.
I will pencil in time for Continuum and weight workouts (yes, I am a heretic that way!) and walks and dance.
I will make drawing, quilting, encaustics and multi media work a regular part of my life, not just tucked in around the edges.
There will still be plenty of work time, and trips, and all the rest.
I just had to get here first, I guess; the reshaping of the outside making room for the reshaping of my internal map.
Something lost exchanged for something to be gained.
Not a bad hand.

Saturday, October 1, 2011

What to do?? Answer: D : None of the Above

You've had your yin, ladies and gentlemen, and I have got your yang, fresh out of the oven, right here.
Step right up!!!

The last two days I have been feeling so good that I thought it was time to get some work done on a quilt I've had in mind. I had cut all 700 strips of fabric before I went in for surgery, so I wouldn't have to stress my arm in any way...
The day before yesterday I sewed for two hours or more, and felt fine.
Yesterday I did the same, but toward the end I began to notice that my left pec (chest muscle) was really starting to ache in a sharp way. I began to notice that everything I was doing was left sided: reach for a block, lift the presser foot & put it down, sew, lift the presser foot & put it down, put that block on a stack to the left; get a new block...from the left.
So, I stopped immediately, took two Alleve & went to bed early.

I woke this morning with swelling so profound that, in clothes, I look totally even side to side.
Admittedly, they put 400 cc's of fluid fill in my expander during surgery, but that is *ahem* nowhere near my natural size.
And the pain had increased.

I talked to the doctor on call for the weekend and, through my tears, told him what I was seeing & feeling, sure that I had unwittingly created some major damage to my healing.
He said that 95% of women do this same thing; that at day 10-12 we are feeling so much better that we begin resuming normal daily activities before the tissues are anywhere near ready for that.
He had me do some circulation tests to make sure that the swelling isn't endangering the sutures, and, thankfully, all is well in circulation-sutureland.

He did tell me to get back on my pain meds for a few days (so yes, I was sleeping on the couch with the dogs all day...) & to do (hear this in Sgt. Schultz' voice from Hogan's Heroes) NUSSINK!!

So all my cheeriness has become mulch today.
Even knowing that, gratefully, I have not hurt myself, I must now just sleep & watch TV for two weeks.
I might possibly get to read if I can go back off of the meds in a few days...

Is that a curl I feel growing right in the middle of my forehead??