Boobs On Ice™

The Cost of Life

It's not just a tight economy that makes considering the cost of long term medical care daunting. Some of us can live years, decades, or longer while being treated for cancer or after having a cancer removed. So when I found out what the anti-tumor drug, Arimidex, that I'm scheduled to take for five years would cost without insurance coverage, I was kind of speechless.

My husband turns 62 in a few weeks. Although I think he can't work forever, he claims he will need to, and beyond good insurance coverage that comes with the job, it's pretty clear to me that I'd soon go off many of my prescriptions, especially one that costs $250.

Granted, there are groups like the Partnership for Prescription Assistance, set up to match people with public or private programs to get medications to those who need them.

But how many of us aren't looking for a handout?

We don't want our friends to raise funds for us. We're not asking to get our medications for nothing. We don't want other taxpayers paying for our medications either, in some feel-good utopian ideal society where we're all equal because the state imposes that on us.

We especially don't want to be stuck living a subterranean, windowless existence our kids' basements because even pooling our money we can't afford to build extra rooms onto their houses AND pay for medical care and we don't want to take money that should be used for their family vacations at Disney World and piano lessons for the grandchildren.

But we're still shocked when we discover what our medications really cost beyond our copay of someplace between fifteen and thirty-five dollars.

The truth can be daunting

The future looks much less sure than it used to. Ten years ago I had planted firmly in my brain the image of being the healthy old lady my grandmothers were. And I wonder how many of us would make different choices about medical care for breast cancer - or anything else - if we factored in possible future financial fallout of whatever we will need as a result of decisions we make now.

Given my age, it could be that I am just delaying more tumor growth for 5 years, thus insuring that a recurrence will happen when I'm covered by Medicare and thus have many fewer options.

The AZ&me program looks like it may make it possible for to get a 90 day supply of Arimidex for $50 for a retired couple on a very low fixed income but by then what other medications will I need?

It seems obvious, but unspoken, that there is a cost, both emotionally and financially to keeping people with chronic or terminal illnesses alive.

And beyond that, it's not just a question of living - but how we live.

Do we as a society insist that if our people are kept alive through modern medicine, that hand in hand with that goes having their pain controlled? Do we as a society also take the responsibility of insuring that the living are not just warehoused but feel productive? Is that really our responsibility?

All of it may be something we as a country need to think about. Choices are hard. Hell, the whole topic is hard.

It's easy to philosophize about when the topic is an abstract one. It's easy to write a prescription plan to send to Congress. But as for living the everyday of it? Pfft. Not pretty.

Is going back to hiding under the covers and believing that tomorrow some magic will happen an option, because if it is I'll take it.

And if I win the lottery I'll make sure I sock it away for that really bad day down the road. It's just that lately, I'm not sure what a real emergency looks like.

Living our own "Last Lecture"

I don't usually post the same general content on two blogs, but this is an exceptional time and a cluster of very visible cancer deaths seem to be all around us. So the Boobs blog readers who don't always read the Artsy Asylum Blog may have missed what I passed on there.

I wanted to share it with all of the people who I have any reach to - because I believe it's such an important thing that I need to talk about.

Here's where I am. Since December 7th 2007 I'm in and out of hospitals and clinics and medical offices more than anyone wants to be. And maybe as a part of this or because it's just who I am, it's agonizingly difficult for me to see people with cancer deteriorate and die - even those I do not know, or know only slightly. One of these, Randy Pausch, the Carnegie Mellon professor whose "last lecture" made him famous, died today almost a year after he was diagnosed with pancreatic cancer.

In the time leading up to his death Randy looked good, in contrast with Tony Snow's appearance in the months before he died earlier in July of colon cancer that had spread to first his liver and then elsewhere. Tony was gaunt and had aged twenty years in my eyes. My heart hurt to see him.

Then every weekday that Leroy Seivers of NPR writes his blog I get emotional again as I see evidence of a steady decline and that the always insightful and frank Leroy is near the end of his life, as he now weighs the pros and cons of hospice, and has a home health aide four times a week.

But as sadness envelops me, Randy Pausch simply bloomed! In the months before his death Randy was upbeat and seemed unfazed by what the rest of us are overwhelmed by.

And that gives us all something to consider.

When he gave this Carnegie Mellon commencement address in May, he had lived three months longer than the three to six months doctors had predicted, leading a friend to say he was “beating the Reaper.”

“We don’t beat the Reaper by living longer,” Pausch said. “We beat the Reaper by living well.”

My message in reflection:

• Please love others and live well while you can.
• Give generously of yourself and your spirit.
• Adopt a cause or two.
• Be present to what's happening around you and not distracted by the latest shiny thing of the blogosphere.

It's easy to be engaged by internet popularity, blog stats, being included in lists and invited to functions. Things are nice to own. But will that really matter when you face the end of the road?

Like Randy Paush who was only 47, or others we know who were suddenly stricken and died much earlier, we never know when an unexpected diagnosis - or a bus - will mark the end of our time here.

Let's make today even - simply this day - one that we'd be proud to call our last.

And then tomorrow let's get up and do it again.

And while you're doing it, just know that I love you all.

MyFax Piggybacks on Pink: Links One Dollar Donation to Cancer for New Accounts

In the Good News: Bad News department, a note from Marie Grimaldi let me know that Ottawa-based MyFax, one of the leading Internet fax providers, has agreed to donate $1 to the Canadian Caner Society for every new MyFax account opened between now and June 20.

The money going to a good cause, and I applaud the effort to go green w/ paperless faxing since according to Energy Star, fax machines are one of the most energy-intensive pieces of equipment in your office. The energy vampires constantly draw power because they need to be available at any hour to receive a fax.

But what is sad is that MyFax folks chose not to donate the cost of even one month's service fee when a new user signs up. In my view, donating a dollar when the fee to users will be anything between $120 and $500 the first year is insulting to the cancer community and frankly a disappointment. I not only think they can do better; I think we should expect better.

At least at first blush, piggybacking a sales effort to the whole pink marketing of the cancer machine makes me suspicious of a company's true nature. In an odd twist it seems as if they are less than the generous community-aware folks they'd like to look like. And a dollar donation is shameful.

What do YOU think? Tell me why I'm wrong. Are they a poor startup starved for cash and with a tiny profit margin? I might agree with you if that's the case. What are other good reasons the dollar fee is so low?

The Great Unknown - Facing Fears

When Eden Spodek wrote about her long ordeal in a healthy woman's battle with breast cancer she was extremely brave. And I surmise that she was brave through the whole experience.

It sounded like me in my forties; A part of me that's gone missing. For example although I knew most of Eden's story in advance, when I read it I cried. I gave her some feedback, then cried again. I sobbed when I pushed the publish button and again when I read it to my family.

I'm not generally a crier. Instead I'm more likely to just take action. Jump in. Fix something. Offer something. DO something!

But she was so brave. I'm so disappointed with myself by comparison these days.

All week I've been trying to figure out what's really at the core of this fear that's increasing daily to the point that it's overtaken me and nearly frozen me in place.

Back in December when I get that sudden diagnosis of invasive breast cancer that had already grown, I was very matter of fact. I went through the testing at that time with my pragmatic self intact.

An odd blend of self- deprecating black humor and perkyness seemed to be a good defense.

But over the past five months much of my authentic self seems to have ebbed away and my veneer worn thin.

My husband any youngest daughter have provided sounding boards and care whenever I asked something of them - and even when I didn't. She cooks, shops, runs errands, and does the nurturing part of the job. He cleans, works, makes appointments for me and goes to most, then goes back and works some more before coming home to play listening board to my concerns.

Why can't I be brave and strong with all that support?

Searching for clues, tonight at http://www.breastcancer.org I read a question from a woman who admitted to having a high level of fear about her cancer experience.  Rosalind Kleban MSW, Administrative Supervisor for psychosocial programs at Memorial Sloan-Kettering Cancer Center's Lauder Breast Center in New York City told the patient:

"you are doing brave things—taking care of yourself and doing things that need to be done. It's always amazing to me how wonderful breast cancer patients look. That just covers what they're experiencing within—the terror, uncertainty, fear—how they are really feeling."

I'm not so sure this applies to me. Oh sure, I'm doing some of the things I need to do. I've been looking for a doctor who was on my wave length and so far the progress is that:

• My mastectomy has healed and my chest wall gradually expanded.
• I now have one partially rebuilt breast and one intact breast that will be "matched" in a double surgery that has been moved up to June 11th. The end of that road is in sight.

• On the other hand a bone scan reveals that cancer may have spread and could be responsible for pain I'm feeling in a number of other areas.
• These will be screened tomorrow with CT scans and X-rays.
  

• I'm meeting with an oncologist on June 5th to go over new CT scans and X-rays test results as well as pathology reports and tests from December and January..

But most of that has been guided my husband's appointment making skills. Behind the progress I'm beginning to come apart at the seams and the uncertainty and terror is starting to show. It's not the CT scan, or the IV contrast and bariuum coctail that I fear.

Beyond the tests is the great unknown

So perhaps it's really about the long schlog just to get to this point. And the waiting. Perhaps it's about more strangers and even more doctors. Then add in putting my trust in each person on a medical staff will assure that their part of the process is done and done correctly.

It could be the myriad of possibilities that await, or even resenting putting on a positive face. And the responsibility of educating myself and the family so that we can consider options of what to do no matter how things turn out.

In the end

The wearing away of my pragmatic, chipper, upbeat
self is getting on my nerves. If I was my kid, I'd be tempted to give me/them a swift smack on the tushie and tell them to lose the tone.

A healthy woman’s battle with breast cancer

By Eden Spodek

After months of agonizing over whether or not to make my story public, I’ve decided to come out as a woman who has decided to share something very private. Especially since so much of my life has become public over the past 20 months with the launch of my blog. This story is a very painful one and one I’ve only shared with close friends. Between 2002 and 2005, I had a double mastectomy, reconstruction and a complete hysterectomy. Here is my story…

Saturday, May 24, 2008 marked the date of my eldest son’s Bar Mitzvah. There was a time when I wondered whether or not I’d live to see the day. For me, it was a day for celebration on two levels.

Eight years ago I learned I had a genetic mutation known as BRCA1. According to current statistics, I had close to a 70% chance of developing breast cancer and a 40 % of developing ovarian cancer by age 70. The odds of it happening sooner than later were also staggering. It was the beginning of a difficult journey that I believe helped prolong my life. Otherwise, I feared I wouldn’t have been around to watch my children grow up.

Why did I get tested in the first place?

My mother was diagnosed with early-onset breast cancer at the age of 32 and died when she was 37 (I was 15). There was also a history of breast and ovarian cancer in her father’s family. I am also an Ashkenazi Jew (a high-risk group with 1 in 44 women having a BRCA gene.) Those two factors made me eligible to for genetic testing when the criteria was more stringent than it is today. (For the first time in Canada, Jewish women regardless of family history will be offered the genetic test for free*.)

I also had some early warning signs, excellent physicians and started having mammograms when I was 28. When the first familial breast cancer practice opened up in Toronto while I was in my early 30s, my gynecologist urged me to meet with Dr. Paul Goss, a medical oncologist specializing in familial breast cancer research. I think I had just given birth to my eldest son. I was offered genetic testing early on but knew I wanted another child and didn’t want the results to get in the way of my decision. I waited almost two years after my second son was born.

I suspected I already knew what the results would be and I wasn’t ready for them to be confirmed. Once they were and I was told I had the BRCA1 gene, I wasn’t surprised but I’d by lying if I said I wasn’t upset. I was upset enough to gain more weight than I had gained during pregnancy. (I lost 30 pounds six months later and kept if off until I struggled with my body image during the breast reconstruction process.) Through the familial breast cancer clinic, genetic counselors and social workers were at my disposal. I spent a lot of time studying the genetics issues. I had lots of decisions to make:
• do nothing,
• enter a more intense screening program,
• take Tamoxifin for five years which at that time was more experimental, or
• have prophylactic surgery – an option I had sworn against since I’d heard of high-risk women opting for it years earlier.

After doing some heavy soul-searching and scads of research, I chose more screening including regular mammograms and MRIs as part of a study. I also tried Tamoxifin. After 3 weeks and feeling like I’d aged 20 years, I nixed the experimental drugs. I hated the MRIs yet I refused to take the sedatives they offered during the procedure. I also hated waiting several weeks for results – results that were often unclear or false positives – that often required repeating. I also had an area described as “ropey” on the left side of my left breast. Doctors performing clinical breast exams were always concerned. I kept having doubts about the efficacy of the screening. I also had spots called calcifications – another warning sign of things to come.

Eventually, prophylactic surgery seemed like a more viable option. Dr. Goss was known for being aggressive when it came to recommending prophylactic surgery as prevention to otherwise healthy women who may or may not develop breast cancer. And, with early screening and detection the odds of survival were increasing. Except for one thing, he thought women with BRCA 1 or 2 seemed to get more aggressive cancers and even early detection wasn’t always enough.

So, he sent me on a journey.

I spoke to every leading breast cancer specialist in southern Ontario. Each one had a different area of interest and a different perspective. Male doctors also seemed more in favour of surgical options than their female counterparts. I also spoke to specialists in Eastern Canada and Chicago.

While on my journey, new information emerged about the relationship of ovaries and breast cancer. Specifically, removing them and/or tying fallopian tubes would not only decrease the chances of ovarian cancer but was also found to decrease the risk of estrogen-receptive breast cancers. My childbearing years were over and the thought of removing invisible organs instead of my breasts seemed like an easier option.  I started asking my gynecologist questions like “If I remove one ovary and tie the other tube, what would my risk reduction be?” She referred me to one of the two top gynecological oncologists in the city.

Timing is everything.

A mere two weeks before my appointment, a well-supported study was released comparing two groups of women with BRCA1 who opted for prophylactic surgery. There was a staggering difference in the occurrence of ovarian cancer for those women who removed just their ovaries vs. those who removed their ovaries and had a hysterectomy. The surgeon made a convincing case for the latter. I left the office in tears and was told I should have the surgery within two years because I was two years away from the age when the cases of ovarian cancer in BRCA women increased exponentially. Ovarian cancer is very difficult to detect, particularly in the early stages and difficult to cure.

After much research, anxiety and introspection, I decided to start what would later become a three-year surgical misadventure, with an oophorectomy and hysterectomy. I had just turned 40, and a young 40 at that. The thought of premature aging and losing my breasts was daunting and scared the you-know-what out of me but I was married with two young children and the though of them living without me was far more frightening. I knew what it was like to grow up without my mother and couldn’t bare the thought of my kids growing up without me.

Besides with laproscopic surgery, the procedure was supposed to be quick and the recovery relatively easy. Unfortunately, things don’t always go as planned. I started bleeding uncontrollably. They had to cut me open after all. I almost bled out on the table. When I woke up, I was left with huge stretch marks (I never got any during pregnancy so they were quite a shock), anemia, chronic lower back pain and frequent bladder infections for the next six months. A 3-week recovery period turned into a three month absence from work.

Back to the boobs…

I continued with the MRIs, mammograms and clinical exams. After getting the all clear several times, things changed. I was diagnosed with a fibroid adenoma. I had a small benign spot on my right breast that was indicative of a future malignancy. I had two needle biopsies – the first one inconclusive, the second one seemed all clear. Regardless, I couldn’t stand feeling like a sitting target. I was ready to tackle the next round and have a bilateral mastectomy.

Next I had to interview and be interviewed by the surgical team. They needed to make sure I was comfortable with my decision and had done my research. It didn’t take much to convince them. The plan was for immediate reconstruction with expanders for six months to be replaced with cohesive gel implants.

Unfortunately, things didn’t go as planned this time either. My incisions didn’t heal properly. The expanders had to be removed two weeks later. I went from a double DD cup to being flat as a board for eight weeks. I wanted to end up a B or small C.  Instead I wore prosthetics for several months until I was healed enough to have the expanders reinserted. It was almost two years before my breast reconstruction was complete. For most women it takes between six months and one year to complete the process. The good news was they didn’t find any malignancies during the post-op biopsy of my breast tissue.

Along the way I had a supportive husband and family, joined a support group and spent a lot of time as part of an online community for high-risk women called FORCE as “ElisaS” (a hybrid of my real name). I met several other women in real-life and online who were dealing with similar issues. Out of the 10 women in my real-life support group, 5 of us have remained close over the years. Of the 5 of us, only one woman hasn’t had any preventative surgery. She was recently diagnosed with breast cancer. Fortunately, it was caught early but it may have already spread to her lymph nodes. She’s awaiting her prognosis.

Why didn’t I do this sooner?

I was concerned about my privacy and that of my family. I needed to wait until they were comfortable with my decision to go public. I believe there is a stigma attached to women with a BRCA gene mutation who choose surgical prevention. We’re caught between a bit of a rock and a hard place because we’re treated sort of like we have breast cancer and sort of like we don’t. We’re still pioneers as far as the medical community is concerned too. I’ve experienced adversity as a result of my prevention decisions and I am concerned about whether or not people will treat me differently as a result. It’s been weighing on me for a long time.

Inspiration

After sharing my experience with Susan Reynolds for months, Katie Delahaye Paine at mesh last week, and conversing with Mathew Ingram on twitter about transparency in the context of the story that broke on the front page of Canada’s national newspaper, The Globe and Mail (also his employer) last weekend – coincidentally, on the same day as my eldest son’s Bar Mitzvah – I knew it was time to tell my story.

I decided the benefits of sharing my experience and possibly helping other women outweighed the costs. I hope I’m right.

...
*NB Dr. Steven Narod, holds the Canada Research Chair in breast cancer and director of the familial breast cancer unit at Women’s College Hospital in Toronto. He is instrumental in the program being offered to test Jewish women for the BRCA gene mutations in Canada. I consulted with him and genetic counselors on his team during my journey.

Update: Five Finger Shoes give me the - er - um -

Though I sent a note to Vibram about those shoes you either love or hate, repeating essentially what I said in my earlier article about how I thought they might make cancer patients feel better - the five finger folks seem initially unimpressed.

I got a polite "dear John" esque letter in return; essentially don't call us and we probably won't call you.

Oh - and there was a caution to talk to my cancer docs before trying the shoes.

- heh - like that's going to happen. I'd use the shoes as an excuse to stop by the office and show off the shoe though.

This lukewarm response could have been because I contacted them through their web-form, which did not separate my lovely paragraphs and provided them with a page of what looked like run-on babble. I did not look like I graduated tenth in my class. Or maybe lke I graduated tenth in a class of twelve.

Or it could be that I did not name names. I should have told them that Devra from Parentopia had sent me or that tweeting about them could really help them since I made @guykawasaki's Alltop tweeters list!

(You think they know what twitter is?)

Speaking of Guy, I wonder if he wants a pair of what Devra calls toeshoes to go with his orange crocs. Five fingers has a pair that's kind of red-orange - or one with bright orange webbing between the toes.

That idea is helping ease cancer pain already as I'm sitting here laughing. And all of our kids could refuse to be seen with us. Maybe they'd pay Vibram NOT to sell them to us! Luckily I just have less living at home than he does.

But off embarrassing our kids and back to toe shoes

OK - it was only yesterday so I'll give them awhile to respond but if they don't it'll be their loss since it would be super if they see the opportunity sponsor my trial of the funny cute adorable shoes that of course will make me feel like tippy-toeing around instead of lying in bed feeling like a truck ran over my chest . . . and then backed up so it could get my back too.

The next option is to take the $ from an acupuncturist appointment or a dozen yummy mocha frappuccinos I beg from @badwolf when she's out.

Focus on the finger

Sooner or later - I'm trying toe-shoes come hell, high water or really bad scan results when I go to Sibley hospital next week for tests. Which begs the question wouldn't these blue ones look cute in the CT scan macine with my adorable little gown?

And if I had them before surgery on June 18th I could sport them around George Washington University Hospital and cause a stir.

Oooooh yes - the perfect way to give a special focus on the finger - ten of them in fact - to the health care system.

Come on, Vibram. You KNOW you want to help me do that! Short of coming out with a GREEN five fingered shoe - the Frozen Peas Ease Pain model . . . ohhh wait now that's even better.

Hmmm . . this could be big for Vibram. Who do we need to explain to the finger guys just how big it could be? The name Scott Monty springs to mind.

Now that is a killer idea if I ever had one. Figuratively speaking of course.

Might Validation Help the Exhausted?

Caring for every patient to the best of our abilities does not mean sweeping under the carpet the symptom listed most troublesome by the majority of cancer patients in this country.

There's something that over half of us say is worse than the pain of cancer and treatment and recovery.

And by that I mean that yes, most cancer patients rank fatigue as a symptom more bothersome than pain.

How stunning is that?

But do you ever hear about that? There's something to simply being heard; to not being discounted. In an online issue of a journal: the Oncologist devoted to cancer-related fatigue, dated 2003 (one article you can download below) you'll find articles that make a strong plea for acknowledgment that for cancer patients fatigue is real.

2003. That's Five years ago.

Oncologists knew - or should have known - that they should be telling us it was part of cancer to feel beyond tired, beyond fatigue, and that they don't really know all that much about why it happens or what to do about it.

It wasn't simply having someone acknowledge that fatigue is a part of the cancer experience that helped me accept that I wasn't nuts, but reading what Doctor Jane Poulson said of her own cancer exhaustion at least let me say "finally!"

And one writer in the journal article makes the case that It's worse if you feel isolated in fatigue:            

"What a comfort there would have been, however, in knowing that my exhaustion was being monitored, was being taken seriously....

"I was doing my utmost--a healthy diet, meditation, counseling, as much exercise as I could manage, and lots more besides--to cope with my fatigue. I needed to know that my exhaustion wasn’t the result of a want of imagination or some other lack in me or my attitude.....

"I didn't need to hear of 'sleep hygiene' with its pejorative implications. Nor did I need pills or potions to block out the experience. I knew I needed to feel it all fully, if I were to grow through it, to turn it to my advantage. I knew I had healing resources within myself if I could just push through the fatigue to access them. What I needed was to be held safely in that place." 

Maureen Gilbert. A Survivor's Journey: One Woman's Experience with Cancer-Related Fatigue The Oncologist, 2003

Unlike Maureen, I'm not fine with feeling it fully

I'm done with the "it's just something I'll have to go through" period of acceptance. Now I'm getting mad.  So to hell with feeling it fully. In fact I've had five months to feel it - and some years before that when we didn't know what the symptoms were from. I'm beyond ready to walk out the other side of exhaustion - or to be dragged there through some miracle of modern medicine.

Not only do I believe that it's necessary for this overwhelming symptom to be recognized and brought clearly into the light of day; it's just plain time to do something about it. Recognizing it and acknowledging it is certainly the first step.

If you're a patient:

Be assured that we understand you are beyond exhaustion, that it is real we encourage you to insist to your doctor that it's a serious part of your cancer experience. If the first one doesn't do something pro-active to try to help, see another doctor. No platitudes, no sympathy, and no telling you to tough it out is going to help you feel better.

If you're a friend or relative of someone with cancer 

Please know that their symptom is not something that a nap can simply take care of, whether their doctor gets that or not. Help them find a medical professional who is able to think outside the box. Let's face it; they are likely just too worn down to do this themselves.

In the end discounting cancer exhaustion makes it worse for the person experiencing it, for those around them who are baffled by it, and for the goal of reducing the impact of the disease in every way possible.

I'm not shutting up about until somebody hears these thousands of voices repeating the same words.

I just want to feel enough energy to get out of bed to make dinner without needing a nap after doing 5 minutes of it! I'm not demanding that I be able to walk from the car to the metro train to have drinks with friends. Or push my granddaughter on the swings. Or fly to a conference with my husband. I just want to get up and go to the grocery store for bread.

This lack of knowledge about cancer exhaustion is simply not acceptable in the United States in 2008.

Related reading:

• Download: Download cancerfatigue.pdf
• Doctor Poulson: We're Not Just Tired
• Cancer Fatigue: it Feels Like Death

 

Message in a Bottle: Virtual Notes From Mom

Not being morbid, but I've done a lot of thinking - and some writing - about leaving something of myself behind no matter when it is that I die. I have cancer, let's face it. It turned out to be the invasive kind so it could appear in some new spot next year or in ten years, it's still worth thinking about if it's twenty years from now.

It would be worth thinking about if I were 30 and might get hit by a bus - or lightening - tomorrow too.

When the kids were little - mine are 22 to 37 now - I kept a jar with slips of paper in it on the dining room table & sometimes the kitchen table - sometimes even plastic easter eggs held strips of paper. I was heavily into paper.

At one time the jar had chores written on the strips, and sometimes there were surprises or rewards on the strips, but most often the jar held questions, ideas, seeds of thoughts. Often at dinner one or more of them would pull a strip of paper and talk about the question.

They were things like:

• What’s the most important thing you ever learned?
• What do you like about your toes?
• What was it like when was your grandfather was a little kid?

Funny or bonding or just designed to get them talking.

So a few years down the road - in this age of electronic everything -  there should be SOME way to get my kids a virtual version of short notes from the glass jar when they need one.  Adult kids and even grandchildren should be able to do something when they need to feel connected to me, that would get them a message - a little note - containing something I'd say to them if I were around.

You never ever know when they need one.

• Waiting in the ER for their kid's broken arm to get casted.
• After losing out on a dream job.

They just need mom - anything mom can say - not about the specific situation they face but just something she wrote for them.

Oh I could just start writing messages on slips of paper and sticking them in jars or boxes or someplace to be divided up later.. but that makes the container the symbol, not the message. So I don't want to do that.

Then comes the question of what to say.

Since I don’t know when they’ll need me, and it will have to be a system where they pull one out when needed - not one where I have something all ready for the day after their husband cheats on them - I think it would work if I could just keep the messages focused on memories of them, hopes for them, love for them, tossed in with some good old mom sayings that might make them cry or laugh or roll their eyes but will make me seem close by.

Maybe eerily so, but I hope not. Because I look at this as a project of love that could be done by anybody, at any time. I'd love to have little notes available from my grandmother to me, even now when I'm a grandmother!

But now's the time I need to call on technology. If we don’t have a magic dispenser dude to open a jar and hand the kidlets a slip of paper - and they are spread out over the US like my four - is there a virtual way to get them what we want them to have - and what they probably really need? . . I hope so.

I'll be looking for it. In fact I think it sounds like fun,

We're Protected By Cool PEAs

When I read information that shows how much community and a sense of connectedness can decrease recurrence of cancer, I start to think of all those cute little pea avatars I see online every Friday. When I had my biopsies those cool little peas stuck in a baggie in my camisole all huddled together in my cleavage, conforming to the shape of my breast, protecting it and bringing me cool comfort.

Face it - there's an analogy here

Just like those comforting, calming frozen peas in my bodice, what the pea avatars have come to represent are hundreds of virtual strangers who have come together to help me keep my cool on my walk through the cancer maze. It's a beautiful thing

Over the weeks since that day in December 2007, I've discovered more and more amazing caring people in the virtual community who don their pea avatars on Fridays - and increasingly I glimpse them on other days too.

More than words or gestures

These people have nothing to gain, but they provide me and other patients with a sense of community, of virtual support, that is absolutely invaluable to us.

We may not be able to measure how long we stay cancer free because of the support of our all those cool frozen peas surrounding us in our communities. We may not be able to measure our love for those people who have never met us and still reach out in many ways to us every day of the week.

But I can point out that I recognize that they help in real, identifiable ways, every single day.

And I thank them from the bottom of my heart.

graphic representation of connections in online communities above from orgnet community where you can learn more about community

Pea avatars complements of the Frozen Pea Fund Flickr group

Sticks and Stones; the Quality of Life

When I woke up most days last week everything hurt. It got worse as the week went on and I rolled up more and more into myself, interacting less and feeling worse.

I'm an analyzer by nature. A looker, an observer.

So it was natural to ask myself a question. Given that waking up hurting is absolutely normal for me, what was it about this week that threw me so hard?

Glancing at a run-down of the week, Valentines day was coming up with its guarantee of chocolate and flowers. And I had on the schedule a visit with some really nice guys that I was looking forward to talking with, Jonny Goldstein and Scott Stead.  

What was hurting was something I couldn't point to on an anatomy chart. 

It goes back a few weeks to when someone I've known for more than a few years, before twitter, said to me:

Bet you're already tired of the phrase, "quality of life."

Um . . Actually I  wasn't tired of that phrase.

Because no one had said the words to me.  Or if they did I had not heard them; willingly or unwillingly I can't be sure of my ears' filtering ability.

It's possible that I could have put it out of my mind and had no memory of it. But I really don't believe that anyone had opined on how I was affected by the phrase quality of life.

And though these are only words, until your own life is an issue the words have little meaning.

So what did it mean?

I can't speculate beyond that it was careless and didn't mean much. But that said, it's just reality that some people must wonder why some of us chose to hang around with all this crap going on with our bodies.

Today I can put it in perspective. On February first apparently it struck a nerve.

Only words.

People say sometimes they don't know what words to use to talk to those with any illness, cancer or whatever it is. I understand that, truly I do. And we all want to be talked to.

But yes, there are some things that are better offered directly, in a note of support, surrounded with words of reassurance. For some things, the 140 characters twitter offers just won't do.

And it's true. No matter how we're taking it, or seem to be, there are emotions - sometimes even hormones connected with the cancer or the treatment - involved.  So a quip opining that anyone with a terminal illness is probably sick of hearing about their quality of life might not be the best idea.

Because how will you feel if they respond: "You are the first person who as talked about my Quality of Life."

Only words

Honestly, as sad as this is to think, it could happen that someone may decide that their quality of life is pretty lousy; that life was not worth living. Someone who is not lucky. Someone without my twitter community, my insurance, without my husband, my children, my granddaughters might not care if they didn't get up tomorrow, or next week, or next month - and take steps to hasten their departure.