Boobs On Ice™

Fatigue Fighting or Fishing in My Wallet?

I hate it when I run across something that sounds too good to be true. But today I came across a photo of Lance Armstrong talking about something called FRS healthy energy.

Coming equipped as I do with a well developed skeptic gene, I don't buy cure-alls or miracle supplements. So I wouldn't pay any attention here except the material says FRS was originally tested and refined by Harvard's "Dana Farber Cancer Institute as a fatigue fighting and general health drink."

And studies - they've at least got some numbers to back them up.

Would I be just as well off keeping up with my fruit and grain and protein awareness program? I have no idea, but the exhaustion is not going anywhere and it's getting old.

Right off the bat since they are dealing with my primary complaint and use two respected names, Dana Farber Clinic, and Lance Armstrong in the promotional materials, I cant get away from feeling that I'm going to need to know more about this.

Remember - I don't look for anything like nutrition to kill cancer cells. But IF there is anything I can do to increase my energy level, I'm so there. Missing events because I'm too wiped out to get out of bed is not my idea of acceptable.

Got ideas for me? Comment away; I'm reading, Or napping maybe, but hopefully reading,

Breast Reconstruction Process: Halftime

If you've never heard much about breast reconstruction following mastectomy you may believe that  surgeons just remove cancerous breast tissue and replace it with a breast shaped form, sew up the skin, and you're good to go.

Not quite.

Clicking on this image will show an enlarged illustration of how the chest wall is stretched - in a series of  weekly or bi-weekly expansion procedures with the surgeon on an outpatient basis - to create a new pocket in which a breast form is placed in a second surgery.

I have one, perhaps two, more expansions before the pocket is large enough to accept the form. The last expansion will be followed by a couple weeks of rest for the chest wall. Then comes  surgery to remove the expander and replace it with the breast form. I am hoping to schedule surgery before the end of May.

So far I'm at four months and counting, though some of the feet dragging was absolutely my issue with decision making and needing reassurance. I admit it has been painful and I've had many doubts along the way.

Below is a video done after my visit with the surgeon a little over a week ago in which my chest muscle tissue was further stretched. It will hopefully give you a little more personal slant.

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Who Knew You Could Help Do Cancer Therapy

Backed by a growing body of evidence, holistic cancer carer is being practiced in major medical centers from New York’s Memorial Sloan-Kettering to Houston’s M.D. Anderson hospital.

The value of complementary cancer care ranging from diet changes to herbs, acupuncture, massage and yoga is backed by renowned oncologists at the best university hospitals and cancer centers.

The Good News is The Bad News

For the estimated 41 percent of breast-cancer patients who try complementary approaches, it's hopeful news. And though most insurance covers almost all of our care, they do not cover complementary care.

They'll pay to run an IV of poison through our bodies and will provide a wig to cover the hair loss but the kind of caring treatment that will ease nausea, pain and increase energy isn't approved unless it comes in pill form.

So I'm going to my community - Can I Help Myself through You?

Though I'm not able to work much, I'm blessed to have some visibility. With a functional brain, I remain able to be productive for an hour or two most days.

My time can be spent working with individuals, solopreneurs and small time operators doing outreach using facebook, twitter, blogs etc in order to help reach and build Connections and Community.

For Second Life I can create an upgraded, non embarrassing (non-newbie looking) Second Life Avatar for you and help you attend some functions that will introduce you to either the business or social life of the Virtual World.

In the Art World - My art pieces have been published in national art magazines and exhibited in multiple galleries including the University of North Carolina. I'd gladly discuss this with you.

Commissioned works are always welcome. Mixed media constructions from matchbox sized to wall pieces of sofa size and specialized flat-stanleyesque art dolls ready for framing and projects are a special interest.

If you're interested in some unique pieces of wearable art that are also stunning when displayed in shadowbox frames, you might like those shown here. Special orders and color requests are welcome.

In short, If I've got a skill I can share with others. I will

So now although I'm far from able to commit to taking on full time service clients, it's time for me to share those skills I have. My goal is to conserve energy to heal while also covering the cost of :

• yoga,
• acupuncture
• cancer therapy massage
• hydrotherapy

Defraying the expense of some of the treatments that have been proven helpful for cancer patients but are uncovered by my insurance, plus providing some household and personal assistant help is my goal. Combined with a five year hormone treatment I'm hoping that over the course of the next year I'll improve.

My aim is to be well enough to devote more of my energies to outreach for the Frozen Pea Fund (a 501c3 Non Profit Corporation which raises money for cancer research and to set an example of openly talking about cancer from diagnosis)

Supporting the Body, Mind, and Spirit

integrative oncologist Donald Abrams, M.D., at the University of California, San Francisco’s  Center for Integrative Medicine, insists that acupuncture, massage, and other therapies—all administered by practitioners skilled in cancer care have a place in a plan designed to support a patient's  body, mind, and spirit . .  while having conventional cancer treatment.

“Modern Western medicine is all about expelling evil without concentrating on supporting good,” says Abrams. “I tell patients that I am supporting good.”

I want to Support Good as Well

If you feel as if you can support my effort to get to the point that I can do more please get in touch. I'd be glad to talk with you about it. And if you'd rather not go the consulting route and don't need help with your visibility, you might like one of the small art pieces described and shown here.

Let us know which piece you're interested in and my daughter Kate will send an invoice for me, get the piece signed the way you'd like, and carefully wrap and ship it for you.

A comment below, or a message to either Kate or me on twitter will get you a response and we can talk about what you need. And I appreciate any referrals you can send my way.

   

Where and What is the Paradigm Shift Oncologists Expect in Understanding and Treating Cancer?

 

Dr. Larry Norton, Oncologist, Memorial Sloan Kettering Cancer Center / Dr. Lynn Schuchter, Oncologist, University of Pennsylvania Cancer Center / Carol Hochberg, SHARE / Dr. Dennis Slamon, Oncologist  Revlon  UCLA Womens' Cancer Research Program with interviewer Charlie Rose, discussing the paradigm shift in cancer discoveries and understanding that are occurring at that moment in labs around the world, and that they predicted would continue to bear significant fruit for the following 12 to 24 months - Interview from August 2007

Second half, interview about global communications with  Peter Chernin, President & Chief Operating Officer, News Corp.

 

 

How Do Hormones Fight Breast Cancer?

So far I've figured out that if I'm too busy spreading my energy all over the place I won't have enough for myself.  But this whole cancer thing sure doesn't end with a mastectomy as I was led to believe.

It's all an interconnected puzzle as far down the road as I can see. And now enters the H word . .  hormones.

When I think hormone therapy I think hot flashes and adding hormones via pill to replace the ones we lose during menopause.

But when being treated for breast cancer Hormone therapy doesn't actually involve using hormones themselves. In fact it should perhaps be called anti-hormone therapy because it uses drugs or surgery to block the hormones that are being used by cancer cells to stimulate their growth.

"estrogen and progesterone circulate in the bloodstream. They can attach to breast cancer cells and stimulate tumor growth. Estrogen is the major promoter of cell growth in hormone dependent breast cancer.

"The goal of hormone therapy is to deprive the cancer tissue of estrogen, .. halting or slowing of cancer cell growth.

"Unlike chemotherapy, hormone therapy, also called endocrine therapy, does not kill the cancer cell. (it) acts by either blocking estrogen from reaching cancer cells or reducing the production of estrogen. cancerfacts

Tamoxifen is a hormone blocker that a lot of us have heard of somehow. It's been used for years in both North America and Europe.  

For women before or after menopause it has been considered first-line therapy because it a.) blocks estrogen's action at the tumor but b.) acts like estrogen in other areas of the body.

For example, it has estrogen-like effects on the bone and supports bone health while blocking actual estrogen from reaching tumors or cancer cells that have metastisized.

Aromatase inhibitors on the other hand sound like an option for a shower. Not so I'm learning. They're used to block Estrogen's feeding of the tumor cells but in a different way than Tamoxifen. 

Memo that I didn't get earlier: After menopause adrenal glands take over producing Estrogen when the ovaries no longer do so. I had no clue.

But with aromatase inhibitors the idea now is to block the chemical aromatase,an estrogen precursor made by adrenal glands.

In other words the aromatase inhibitor stops Estrogen from running around my blood stream before estrogen ever actually BECOMES estrogen.

It used to be that AIs were only used only as first-line therapy for for advanced breast cancer in women who were past menopause. Then sometimes they were used in other patients as second-line therapy after tamoxifen stopped working & cancer cells started regrowing.

Now however that's changing - or at least some cancer docs feel that Aromatase inhibitors should be my first line of defense instead of tamoxifen.

But I find it interesting - and good news too - to learn that some patients have responded to multiple forms of endocrine treatment by using one, then a second, and then a third drug months or years later.

Today I'm betting on at least a good five year run with smart docs on the case. Tomorrow maybe I'll decide that's bunk but that's how I feel today. It could be a year - it could be eleven - it's all a roller coaster ride though. Maybe crossing my fingers could help.

Still, my real fear is the fatigue. if I'm too exhausted to deal with it all I won't do well.  How do we manage treatment and living and all the rest? That's another challenge that maybe even smart docs can't solve for me.

Four Month Post-Diagnosis Cancer Update

Writing theoretical and informative bits about mammograms and types of cancer isn't going to cut it for me forever I suppose. At some point I have to tell you how I'm doing.

Back to the Oncologists' Numbers

I had no idea until I saw her computer analysis in early February that if I lived another 10 years (19% of women in my situation won't) I'd have abut a 50/50 chance of having a cancer recurrence within that time period. In short - I feel that my surgeon misled me at best and through the oncologist I got the real picture.

Terrified and shocked, when I saw those numbers, I decided I'd up my chances any way I could, including chemotherapy. 

As February turned to March and the 60 day after surgery mark passed, I expected to keep feeling better. I didn't. I was becoming more and more exhausted with the slightest activity. Chemo hadn't started because I needed more tests and a neurologist's clearance. And that was a good thing, because I had made a decision based on fear, without thinking it through.

For the chance to add 7% to my chance of being cancer free in 10 years I was opting to make myself deathly ill, adding more pain and exhaustion to that which Fibromyalgia syndrome already gifted me with. 

As I felt worse and worse over the next month, voluntarily lowering my quality of life in order to possibly increase longevity seemed like a really dumb thing to do.

In March, Cancer exhaustion had set in.

I could actually understand how some patients opt not to have treatments that will prolong or save their lives because they are just too exhausted to proceed.

At this point, too exhausted to go for my weekly reconstructive surgery appointments, there was no way I was ready to start any other kind of therapy at all, especially chemotherapy. And why call my family practitioner to ask for her input? It seemed hopeless.

Enter the K-Dawgs

At this point #2 daughter, Kerry, had apparently had it. Nine months pregnant, she was not willing to let me curl up and give up. She lobbied for something - anything - to treat the pain and fatigue, including acupuncture with which she had personal experience, and massage which Isabella Morri had been evangelizing with me from the other side of the continent.

Kerry made an appointment with an Acupuncturist with a Masters Degree, Virginia Mitchell who promptly had a fit about my energy level. She set about rebuilding, and guiding me to conserve. Daughter #3, Kate, jumped on the bandwagon, becoming chauffeur to twice weekly appointments and manager of the master schedule.

At the same time, project YUMM materialized out of thin air. No longer was I getting away with going for hours without eating.  Kate shopped for and prepared little plates of goodness nobody - including me - could push away.

Melon, blueberries, healthy cereal, yummy cheese, vegetables, tuna macaroni and other salads, proteins of all sort - it was always attractive, served in manageable portions, creative and well balanced.

She's kept at it, and when I eat what Kate cooks I do feel a little better than when she gave in to my constant suggestions to just order pizza.

It's been less than a month since the girls really inserted themselves into my unrealistic and unworkable plans. Today the status is:

• Continued acupuncture has made a difference in my outlook and pain level.
• Chemotherapy is not something I'm considering but I am researching another option with better results for my type of cancer: hormone therapy (tamoxifen or amnidex/arimidex or both) for a period of five years.
• I've gone back to George Washington University Hospital to continue visits to rebuild my right breast. A second surgery should be possible by the end of May.
• After a long sobfest with my internist I've gotten feedback about unrealistic expectations for recovery and have a second referral to Georgetown's Lombardi Center for a team approach to a complex case of cancer, exhaustion, complications fibromyalgia throws in the mix and who knows what else.
• I'm focusing less on work for the frozen pea fund, making sure I responded to everyone who wants a part of me, etc. and more on conserving energy and focusing that energy inward.
• After talking with numerous professionals I'm persuing prophylactic mastectomy of my left breast.
• To defray some expenses I'll limit myself to very few consulting jobs(1) and creation of wearable / frame-able art construction pieces
• And perhaps most importantly I have accepted that unlike what my surgeon claimed would be the case after my breast was removed, I'm very ill and may be for some time. The proof of the pudding is the handicapped parking hang-tag I've resisted but now have given in to.
• I'll be doing very little for the remainder of the year, limiting myself to physical appearances for the Frozen Pea Fund and the Seacoast Concert for A Cure

It's just got to be upwards from here, as we look forward to a new granddaughter in our lives, and a warm summer filled with sunny days. It helps to believe that.

Besides the support of my family, the response from the internet community have been just amazing. I know that readers probably think that if they send a card, or a bookmark or a package of brownies, a CD or a book it gets lost in the flood of mail. But it's really not that way at all. If you have a friend who is ill please know that they will be absolutely energized every time a piece of mail arrives.

You should know that if you have a friend in your life who has a serious illness and you're a few months out from diagnosis, the flood to the snail mail box has dwindled to a trickle. If there's anything I can pass on that would help you help someone else it's probably to encourage you to continue sending special teabags, or bath bombs, great smelling body oil, a book or magazine you enjoyed (yes - even a used magazine!) or a picture that your kids drew. I promise - it means a lot and will continue to, I assure you.

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(1) What kind of consulting?

a.I'm guiding clients in selecting suitable Second Life names, creating non-newbie avatars and providing suggested activities for those new to Second Life who would like to experience a few business and social functions which will enhance their physical life business or life

b.I'm helping people build their online image including their twitter following, and  helping them to use pownce, eventful, twitter, facebook and other social media to raise their profile and / or that of their businesses

Art: My Fallback Treatment Funding

I'm researching Complementary and Alternative Medicine for cancer treatment - not in the hope that I'll ever get the insurance to pay for it but to be better informed about what might help.

So far Dana-Farber Cancer Institute's website is most helpful. It is written in patient-friendly language but also includes information for doctors to download.

Their cancer care and research is so forward thinking that their therapy center combines massage therapy, acupuncture, nutritional guidance, and other services with more traditional ones. YAY, right?

BUT - even they say

"Despite the documented benefits of some of these therapies, most insurance plans will not pay for them.

Their response is to adapt. Dana-Farber bills health insurance for what they can, offer some at no charge at all, and some have a reduced fee.

So if NIH, NCF, Dana-Farber research and hundreds of other studies show positive results to alternative therapy why won't insurance cover it? It's nuts but that's the case with my top of the line insurance too.

So I'm putting together a collection of Art pieces to sell in order to pay for it myself

Art is my answer to helping underwrite costs of my care. These are mixed media construction pieces that can be shown in shadowbox frames or worn as pins

Because as always my community is really my strongest link in my chain of care - far more vital to me than any insurance company might be. I'll be looking for your help in talking about what I'm doing and why.

What about the future? Hopefully it will include both education and legislation

We need insurance that pays for compassionate care of any sort that has been shown to boost immune function, reduce pain, and improve overall quality of life.

What of patients who can't make and market art through their online networks? What if their skills involve more physically challenging activities they just can't do when they are sick?

That doesn't seem right.

In the meantime, I've got art.

Acupuncture as Medical Preventative Measure

Cuddling with my kitties makes me feel better. I can't prove it - but I know it's so. And apparently I'm not the only one who finds one-time weirdo medicine like acupuncture helpful too. Yes, I've been researching to make sure I'm not totally out there.

An article in AARP magazine recognizes that at one time a cancer patient might have been thought "wacky" for seeking out something outside the oncologists' office to add to conventional therapy.

Years of research and observation on the impact of acupuncture and other components in what I call a stew of integrated care, now more medical professionals are seeing the value of other approaches to healing than those they've known previously.

In recent years top medical institutions such as the Cleveland Clinic, Columbia University Medical Center, Dana-Farber Cancer Institute, Duke University Medical Center, and the Mayo Clinic, among others, have started or greatly expanded integrated-care programs for cancer, heart disease, and other illnesses, while increasing numbers of medical schools have begun designing curricula to train physicians in integrated medical care.

Already, most states can boast at least one major hospital offering integrated care. And smaller integrated-care clinics are proliferating in cities throughout the country.

The momentum is being driven, in part, by the National Institutes of Health's (NIH's) National Center for Complementary and Alternative Medicine (NCCAM), which has funded more than 1,800 research studies at 260 institutions and which runs a consumer-information website that received 2.6 million inquiries in 2006 alone.

In my way of thinking however, neither the number of inquiries nor the people streaming into acupuncturist, massage therapists, nutritionists and yoga studios should be a deciding factor in whether cancer patients should be advised to seek out alternate forms of therapy.

But measurable changes should make us think.

For example the relationship between stress and the way cancer progresses hasn't always been clear,  though it made sense that stress would be a negative influence.

In 2006 however researchers were able to pinpoint beta-2 receptors for the stress hormone adrenalin on actual tumor cells. There is now no question.

"Stress was advancing the cancer"

According to Lorenzo Cohen, Ph.D. the director of M.D. Anderson's integrative medicine program the tumor grew a whopping 275 percent in stressed test mice compared with nonstressed mice, and metastasis (cancer breaking outside the confined walls of where it is and leap-frogging to somewhere else as well) was 50 percent higher.

"From this we can now speculate that stress affects cancer in humans," says Frenkel, of M.D. Anderson. "We don't have a pill for this—but we do have yoga, meditation, and guided imagery."

Another study, presented to the American Society of Clinical Oncology, showed that patients with stage-three pancreatic cancer who received a range of alternative therapies along with aggressive chemotherapy had a median survival rate nearly double that for similar patients who received the chemotherapy treatment alone.

This makes it only a short jump to acupuncture, which in my mind at least is a source of positive energy and stress relief plus a sense of being cared for and nurtured.

I'm not, as I always say, advocating any form of cancer treatment. But for right now, my personal blend includes not just a mastectomy, but acupuncture too. And animals, which is another subject indeed. It just stands to reason though, if I feel better I can heal better.

Resources: The Best Medicine
                 cancercenter.com
                 Universtiy of Tx MD Anderson Wellness Center
                 National Center for Complementary and Alternative Medicine

September 2001: The Snowball Begins Here?

Research says that what kicks off the kind of tailspin I've been in for the past six months can be due to a sudden event such as accident, assault, or loss but more commonly happens when gradual build up of illness or other stresses on the physical systems break down the body's ability to adapt and cope.

Charles A. Moss MD writes

"The imbalance can occur in patients regress or decompensate. . . .(this) can occur in any patient and is not dependent on certain diagnoses or complaints, although it is more likely  in seriously ill patients. . .  often when there is a rapid deterioration in the condition of the patient.

But every life involves stress

On September 11, 2001 in a home about a quarter mile from the Potomac River in Arlington Virginia, I sat down on the end of my bed to put on my earrings and shoes before I left the house for Pentagon City where I planned to work on a contract.

I looked up and saw a plane fly into a building. I barely moved for the rest of the day.

My husband called to ask if we were safe. Co-workers had witnessed a plane thundering by their tall glass walled office building window south of the Pentagon. Soon acrid smoke was in the air outside the house, five minutes north.

My son called from his air base letting know that they were locking down and that he loved me.

A daughter phoned from an office near the CIA. Should someone pick up her two year old at daycare?

I woke up my youngest daughter. There was something she needed to know about.

It was her sixteenth birthday and smoke swirled around Manhattan on the TV screen. It was hard to make sense of it.

And in Washington that day was followed by months

Humvees with guns mounted on the roofs stood in parking lots, at intersections, along our tree-lined streets. People hugged service members they saw on the street.

Then more months went by as old Arlington door mail-slots were taped over and letter carriers wearing latex gloves dropped mail in baskets that were set out on front porches.

I lasted six months before leaving for a thirteen month sabbatical in Colorado. I painted. I wrote. I built a website, I learned to write HTML. I learned about blogging. I didn't see a humvee.

The world I knew had changed forever. And changed on a dime

The return to Virginia was a mixed bag involving a new home in a suburban location, one daughter starting college, another daughter and granddaughter moving back home.

Doctor Moss writing in the Medical Acupuncture Online Journal, discusses a physical situation very close to mine. He reports seeing in a variety of circumstances but all having one consistent theme: a high stress level

Who does that sound like

I come into the picture challenged with Fibromyalgia, a heart condition and an old injury that increases it's grip with the years. Living in a bedroom subdivision separated by highways from even the suburban town nearby I'm an hour away from husband's work and any real activities I'd be interested in. But that was nothing.

Then comes 2008. A client doesn't pay me for Social Media work done in July and August. He later dissolves the company and begins another. A stroke comes in September. Invasive Cancer diagnosis in December. Swift surgery that's supposedly ridding me of cancer with, the surgeon claims, only a 7% risk of recurrence.

Less than 24 hours later I'm out of the hospital, but totally unprepared to be. It's four days before Christmas.

Maybe it's all been a shock to my system

Two months later I get the word from the oncologist that based on my medical file and current statistics hard core Chemotherapy is out of the question in my physical condition and the level 2 chemo I'd be a candidate for would only decrease the chance of recurrence by about 3.5%

Worse news: I've got a 19% chance of being dead in 10 years from something other than cancer and if I'm alive I've got about a 50/50 chance of having a recurrence.   

Meanwhile, Doctor Moss writes

"...In a person with energetic resilience, the imbalance can frequently self-correct with any well-designed acupuncture treatment that effectively brings balance to the energetic system. However, when the depth of the imbalance prevents a response, the (more intensive) treatment is required.

So far we've tried the initial acupuncture treatment twice, once with more dramatic success than the second but both surprisingly positive. In between the two I've had a follow up procedure with rotten results - which is why my clinician decided to go back to step one and do the H/W treatment step one from the start.

Maybe the treatment is simpler. Maybe I need to be taken on a cruise to Alaska, sent off to a spa, left in a cabin in Colorado, cuddled, swaddled, rocked, or sedated just to keep from adding to the overload.

 

Somehow - I don't think insurance pays for that either.

 

Charles A. Moss MD is in private practice in La Jolla, California, specializing in Medical Acupuncture, Integrative Medicine, and Family Practice.  A frequent lecturer in Five Element Acupuncture for Physicians,  he is a founding member of the AAMA.                

Charles A. Moss, MD  La Jolla, CA 92037  619-457-1314

Your Neighbor's Home Remedies

“If there’s any illness for which people offer many remedies,’’ says a character in Anton Chekhov’s “The Cherry Orchard,” “you may be sure that particular illness is incurable.’’…

I think Chechov, by way of his character, have a great point in this line. I've noticed that since I've gotten cancer only a few people offer me remedies.

Naturally - because the ways to fight cancer are fairly well known.

On the other hand when the complaint is fibromyalgia, a systemic, chronic, incurable illness, everybody and their brother have suggestions. Except the doctors that is. They're with me. There's no curing fibromyalgia. I'm on my own.

So here I'll try to stick with focusing on cancer, though my lousy immune system and being exhausted is what's really holding me back from being much better than I am. 

On the other hand, cancer may be easier to tackle than the other factors that make for a questionable quality of life, hard to believe as this may be.