Mondays At Racine

I posted this on my facebook page  but I thought I'd mention it here because it is so good.  I highly suggest that those of you with HBO record (or, hey, even watch live!) the documentary Mondays at Racine.

It is about a salon run by sisters,  Rachel Demolfetto and Cynthia Sensone, whose mother struggled with breast cancer.  They decided that one Monday a month, they would open their salon to cancer patients and give them free services, from pedicures to head shaving.   While the documentary starts with the sisters, the story really focuses on two cancer patients, Cambria, a young mother just diagnosed with Stage 3 cancer, and Linda, 58, a woman who astonishingly, has survived 17 years with metastatic breast cancer.

It's hard to write this review without spoilers, but let me say that watching Cambria's story took me straight back to the early days of my cancer diagnosis, when my son was young and all was unknown.  But Linda's story is the one that stays with me - 17 years of treatment seems unimaginable to me.  She admitted that she had done 15 chemos by filming - that is 8 more than I've done.  While my goal has never been 17 years, it is always in the back of my mind that some women are statistical outliers and somebody has to be one - maybe it could be me.  But, after seeing her difficulty, I couldn't help but think that some things might be more difficult than death - I'm not sure I could manage this for 17 years - life with this pain, this exhaustion, and with what it does to your family.

Back to the salon:  the women are made to feel beautiful and more importantly - normal -  and they find comfort in a place that caters just to them. They go back to hold the hands of tearful newbies who are having their heads shaved for the first time, Cambria now experienced and with her short, chemo-curly do.

The story ends on a realistic note, as a documentary will do.  I do not think there is a breast cancer patient in the world who won't relate to what these women go through, and also who won't feel grateful for the sisters who provide such a  calming refuge in such a frightening storm.

Mondays at Racine is on HBO, which means you can still catch it:  the 18th, the 20th, 21st and 26th and also on HBO 2 on the 19th and 24th.

When you watch it, let me know what you thought.   Don't read the comments if you don't want spoilers!


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Also, I wanted to add that based on a couple of comments, the show, and my own experience, hairstylists seem to be special people.  My own stylist, Cynthia, did my buzz cut when I was going bald at no charge. She made it as easy on me as it could be, styled my many wigs, also at no charge and didn't laugh at me when I pulled them out.  (I originally bought a bunch of cheap ones in many styles and colors, not understanding what wearing them would entail.)   I've practically have to beg her to charge me since my diagnosis. Feel free to check the link out, like her on facebook (she shows photos of her styles and somewhere I'm on there - on of the few times I look good)  and go see her if you are in Sacramento.  She deserves all the accolades she can get.   Tell her I sent you, she does a wonderful job.

Pinktober from a Metastatic Point of View

Today is October 13th, which, as you know, is officially National Breast Cancer Metastatic Awareness Day. What do we Metsters (people with metastatic breast cancer) want you Healthsters (people without metastatic breast cancer) to know about our disease?

First, know that it really is an official day!  There is a formal Senate Resolution declaring it as such, full of "whereas and resolved" and all that legalistic jazz (which would be a great name for a band, by the way).

Where did this resolution come from and who decided on the date?  Why did they choose October 13th, which seems so random,  rather than, say,  October 27th,  which happens to be the birthday of one of my kids?  Actually, I guess I'm glad it's not the 27th as I'd hate to have to choose which day to celebrate.

"I'm sorry honey, but we are going to have to put your birthday off this year - it's NBCMAD, and I have plans to par-TAY.   Dad and I are going to the club to listen to Legalistic Jazz."

I don't know the answer to how this day came into being or why women with early stage cancer get a whole month and a special color and everything, and we, the Chosen Ones,  only get one day.  I do kind of get why the month of October was selected, with the scent of awareness in the air, but it seems kind of forced, don't you think?  I mean, October has been the pink month for decades and October 13th has been Metastatic Awareness Day since only 2009 (the year I was diagnosed with cancer, now that I think about it). Quite the discrepancy.

I'm sure, before Congress was brought in to do the very important work of making this day official, the conversation went something like this,

"Hey, what do you think of including the people who are actually going to die of breast cancer in our Pinktober celebration?"

 "Won't that be too depressing?  Dying chicks don't sell a lot of product."

 "Well, they aren't around for that long."

"How about if we just give them one day?"

Personally,  I would have selected a better month, like April, which is full of hope and promise rather than October, which is full of death and decay.  And October the 13th?  Why?   Did a Friday the 13th roll around, and somebody across the street from the Komen offices (because we know the actual Komen people don't care about metsters) decide to get ready for Halloween and while they were searching eBay for the perfect costume  - one with amputated body parts and glowing bones - suddenly make the death/cancer connection and think, hey! It's Friday the 13th!  This would be the perfect date to let people know about Advanced Breast Cancer?

One wonders why they didn't just choose Halloween, with its built-in focus on death.  I mean, really, is there a better day out there to represent us metsters?  None of us get out of this metastatic cancer thing alive, and honestly, if you saw my mid-section, you would know I need no costume, with the winding scars from numerous surgeries, the puckering muscles, the weird reconstruction, bones sticking out everywhere, topped with grey, scarecrow hair.  I'm the perfect representative for a Halloween Metastatic Awareness Day.

But then, I guess if it fell on an already established holiday, we metsters would not get our rightful attention.

Which, as it happens, we don't, anywhere in the world of breast cancer, from support groups to charitable endeavors.

And, I guess, this begins what we want you to know about Metastatic Cancer:

We are the Ugly Stepchildren of Cancer
While early stage girls are dressing in pink outfits, putting their hair up and going to parties where they get crowned "Survivors," those of us with metastatic disease (aka the Losers)  are left inside, sweeping the stone floors while gulping our Dilaudid, knowing the only Prince who will rescue us is the Prince of Darkness.

We have such different concerns than the early-stagers that it might as well be another disease. Early stage women are nervous about: mastectomies, how their reconstructions will look, missing work, what chemo/radiation will be like, and the biggie, will cancer come back  - all of that is valid, and I was nervous about it all too -  but it has zero to do with those of us who have had a metastatic relapse.

We are, frankly,  beyond those concerns.  What your breasts look like when you are hoping to live to see your child's next birthday - not on the radar.  When you are on your 8th chemo, you know what it's like. We aren't afraid that cancer will metastasize, we are afraid we won't know the right time to call hospice.   We are concerned with death planning, disability and insurance, how our children will grieve and how we can help them ahead of time. Some of us are hoping to find somebody for our husbands to remarry - I mean, she has to be nice to our kids and very sweet, but not too cute, if you know what I mean.

We wonder:  do we write letters or make videos for the kids or will that upset them?  How much funeral planning do we do and how much do we let our families do?  Will treatment cost too much and leave them destitute?   Will I know when to give up?  How much pain am I supposed to take before I ask for more meds, and if I take too much now will it render it ineffective during end days when I really need it? Should I buy that perfect Christmas present in August, knowing I might not be there to give it away?

We cancel all our magazine subscriptions, we write our passwords and hide them away for our husbands, we throw away that childhood diary we don't want anybody to read, we go through our treasures and mark them with what they are and who they should go to and why.  We slowly give things away so our family doesn't have too much junk to go through, and we never, ever, take advantage of out-of-season sales.  Why buy summer outfits, even at a deep discount, when it is October?  There is a strong likelihood we won't be there to wear it in July.

We are mourning our lives while living them, existing in the shadow between life and death, all the while wondering how long until the final chemo stops working.

Our experience is different than that of an early stage woman, and you may not be aware that there are very few support groups across the country for those with end-stage cancer - believe it or not,  there is no help for us in facing our own deaths.   Early Stage women have a support group in every city in the country; they have navigators and special camisoles and brochures to guide their way, and books! Hundreds of books about early stage cancer.

Metastatic women?  Almost nothing.  I believe there are fewer than ten support groups for advanced cancer listed in the US.   Despite our differing needs, we are lumped in with all breast cancer groups, and worse, we have, in droves, been turned away from early stage groups, pulled aside and whispered to by coordinators, saying "you will frighten the early stage women."  There are very few books for metastatic women as compared to the hundreds for early stage.   Even online support groups end up with women fighting about whether early stage women should be allowed to post in the Stage IV sections.  Many argue that they should be allowed there because they could have metastatic cancer any time, as if that means they understood what it is like now.  There seems to be little available for our emotional needs.

We don't fit in with our "pink sisters."  Our concerns are very different, yet we are expected to be just like them, after all, it's breast cancer.   Alone, we are left to deal with real issues of life and death.

You Can't Tell by Looking
There are a wide range of women with metastatic disease. Some have a low volume of bone mets and are still doing easier hormonal treatments.  They work, they look healthy, and you might never know they have advanced cancer.  They might look normal, but I assure you, they don't feel normal, and it only takes one scan to put them in a different category of functionality.  One where I am now - a person who is doing well but is somewhat disabled (which is still hard for me to imagine).  I have done seven different chemos and had many abdominal surgeries and had a life-threatening illness from which I'm not sure I'll ever recover entirely.   I can't work although I'd love to.  I am in pain, sometimes quite a bit,  and I have to limit myself, but if you saw me in line at Spirit Halloween buying a Grim Reaper costume, you might think I look a bit thin (and be super jealous, of course) but you wouldn't assume I was buying a costume of my twin.

Then there are women who are really struggling - they are on oxygen or in wheelchairs.   No matter how much cancer shows physically, all of us are dealing with end-stage cancer, and conditions can change quickly.  I've seen women in wheelchairs live four years, sometimes get up and walk again.  I've also seen women die 3 months post-skydiving trip.  You can't tell. This disease can turn on a dime.  If you know somebody with whom you need to make peace, do it now rather than later.  Later may not come, even if your friend looks fine.

Chemo Is Not Harder if You are Bald
Oddly enough, people think that if you are on chemo you will be bald.  Not all chemos make you lose your hair.  The chemos that they give for early stage breast cancer as a preventative treatment do cause hair loss but most of the ones for advanced cancer do not.  Know this:  how hard a chemo is on you has nothing to do with your follicular status.   I have felt a lot worse on chemos that left me with a full, lush head of hair than on chemos that left me looking like Crazy Britney.   If you hear we are doing chemo, you should pity us and bring us presents, even if our hair is shoulder length.  Actually, you should pity us more, because we have to do chemo AND shave our legs.   Assume nothing by what's on the head.

Treatment Never Ends
We want you to be aware that when you have Metastatic Breast Cancer, treatment never ends.  People often say to us, "Oh, how long are you going to do chemo? like the answer will be four or six rounds as it is with early stage.  The answer is we don't know.  We will do it until our cancer cells morph and mutate and learn to not die in its presence,  and then we'll switch to another drug.  I have done 7 chemos.  I have had half my liver cut out.  I have had microwave ablation and then gamma knife radiation.  I have done 3 targeted therapies.  As soon as one thing stops working, I start something else.  Cancer wants to live, it evolves like a cockroach in the face of a pesticide -  it learns to survive.  Eventually, there will be nothing left and that is when, I hope, I will be strong enough to call hospice.   So don't ask a metster how long they will be on treatment, or when they'll be done.  The answer is "never."  They will never be done. When they stop, they die.

Awareness is Not for Us
Awareness has never helped a single cancer patient, metastatic or not, but it is especially annoying for those of us who are losing the "battle" with cancer.  If you see the word awareness in a charity description, on packaging or on a flyer somewhere it's code for "we use our money in ways that won't help anybody who is actually sick or dying."

We want you to know that we need your money donated to charities that focus on RESEARCH.  Say that with me boys and girls:  R.E.S.E.A.R.C.H.  Here is some awareness for you - only about 5% of all monies donated to breast cancer charities end up helping metastatic women.

And, of course, you are aware that only metastatic women die of cancer, right?

Put those things together and you realize nobody is trying to save us.

We selfishly want charitable money to go to smart scientists in labs who can come up with a way to stop those cancer cells from dividing.   The good news is if they can figure that out, they can save early stage women too. They can save women who do not have cancer.  But they need money.

In the meantime, we are also okay with money going towards scholarships for our kids (most of us with end-stage cancer have had to give up our jobs) or direct patient services (such as rides, food, housecleaning and repairs, help with copays, a place to stay for our families if we have surgeries in other cities, etc).  My husband and I both worked and set ourselves up in such a way so we could live on his salary - all of mine was going to fund my son's college education.   And,I had to quit my job, thanks to cancer. Not to brag, but despite it all, my son has a 4.68 GPA in a difficult program and participates in many extracurriculars (which my husband has to drive him to).   A scholarship acknowledging how hard this experience must have been for him and how successful he's been in spite of it would be nice, but there are surprisingly few.

Pink Ribbon Tattoos?
Maybe I'm alone, but I find pink ribbon tattoos very puzzling. Granted, not all women hate the pink ribbon, not even all metastatic women (although all I know). Jewelry is one thing.  But some women tattoo the pink ribbon right on themselves, which confuses me.   I wonder - what if the woman was metastatic, if she understood that she would die of this cancer - would she still want that symbol on her permanently?  What if she wasn't metastatic and then down the road, became so, like 20% of women do?

If one lovely spring morning you were walking down the street, and roaring up behind you came a Peterbilt truck which slammed into you, squishing you flat as a bug, leaving your family behind, your children motherless, your husband without a wife, your workplace without their employee - and if you somehow caught a glimpse of this future - would you go out and tattoo a big Peterbilt logo on your ankle?  Or if, say, it squished your husband, would you memorialize him by inking a truck on you?

Maybe some would.  Hey, it takes all kinds.  But that's what a pink ribbon tattoo looks like to me, a metastatic women.  It's a symbol of the disease that's going to kill me.  And, it doesn't deserve a place of honor on my skin, where I have to look at it every day.  Not that you could see it what with all the wrinkles and scars and such, but you know what I mean.

"I almost died."
I love the TV show Parenthood, and one of the main characters just went through breast cancer last season. Already her hair is longer than mine is and last time I was completely bald was 3 years ago - ah the magic of Hollywood.  Anyway, Christina is doing what I suggest people do who have had cancer - live life fully, take advantage of this one chance you have, fully embrace it, don't look back.  So, she is running for mayor of her town.  You go, Christina!  Where's the ballot, I should be allowed to vote in TV town.   At one point in the show though, she was having an emotional moment with her husband, who is not as fond of her idea of being mayor as she is.  She started blubbering about her cancer and she said, "I almost died." and he agreed with her, "Yes, you did.  You did almost die."

And I'm sitting here thinking, "she did?"  When did she almost die?  Did I miss something?   She was Stage II, she did chemo, she had a lumpectomy, her doctor said throughout she'd do well, and now she's fine. Sure, it could come back, it can always come back....but it probably won't.  So, how did she almost die?  I never thought I was near death when I had early stage cancer, so what happened to her?  Was it off camera?  Did she have c-diff and go septic and her blood pressure crash and she was minutes away from death?  Why didn't they show that then?

TV People:  Having early stage cancer is not synonymous with "almost dying."

That statement is like the women I mentioned above who protested us metsters having space to talk alone about our specific concerns,  whose excuse is, "I'm not Stage IV yet" as if that puts them on the same level. They may have a 20% chance of becoming Stage IV, and I'm the last person to say it can never happen. But if they are still fine, if the odds are still good - why live with that "yet" hanging above a head like the sword of Damocles?

If you tend to do that, you can leave it off, you know, and just say, "I'm not Stage IV." Do that and give yourself that gift.

Speaking as a person who actually has a fatal form of the disease, who will die from it, it makes me ineffably sad hear the "almost diers." It's like every time you get out of your car after driving home from the freeway and saying, "Whew, I almost died."  Sure, you could have gotten into a crash that killed you, because you are in a thousand pound vehicle on a fast road with goodness knows who else - but you are still here.  Don't take that away from yourself.

Having early stage cancer makes you think of your mortality; you may be fearful that it will metastasize, but fear and worry is not the same as living it.  Christina, you didn't almost die.   You had a disease and were treated for it.  You were never close to dying.  Your friend there, the one who is Stage IV and is still going to chemo, the one who is still getting infusions and whom you say hi to each time you go in for your three month checkups?  The one who encouraged you to run for mayor?   SHE is dying, not you.

Thank goodness.

You might wonder why we need a Metastatic Awareness Day.  And, the truth is, we wouldn't if we didn't have the pinkness of the rest of the month bearing down on us.   However, years of ribbons and fun runs and soup cans and pink vacuum cleaners, and  inspiring phrases such as "save the tatas" or "save second base" or people who proclaim their near death experience when they were not near death have trivialized metastatic breast cancer to the point that one of the most common phrases people say to us when diagnosed is, "Well, at least nobody dies of breast cancer anymore."   And, that is even after we tell them we have mets.

So today, on MAD, I think you should know:

Metastatic cancer is not curable.  People die of it.  And I am going to be one of them.

Turn the Tables

What if it was like this?

The man, sweaty and cramping, groaned as he woke with a start. He was, once again, lying in his own mucusy shit. He painfully turned to his wife and gently woke her. On shaky, weak legs, his heart racing, lightheaded and wheezing,  he stumbled to the bathroom, leaning on the furniture to rest as he made his way to wash up.  His hands were trembling so much that controlling the shower head was difficult, and it felt heavy - he had trouble directing the spray. His sleepy wife stripped and remade the bed, wearing gloves she kept by the bedside, throwing the dirty bedding in the wash. Filth washed off, the man reluctantly put on a diaper to save his wife more interruptions and weakly returned to bed, feeling like he'd climbed a mountain.  He was embarrassed at being unable to control his own bodily functions and being as weak as the baby he felt he'd become.

Four years ago, he'd been a healthy athlete, an Ironman competitor. 185 pounds of pure, rock solid muscle, strong and fit.  His life had focused around athletics. His body was a highly-tuned machine, one he had taken for granted; one that would do as he requested as long as he took care of it. Now, he was wasted and withered, 120 pounds at 6'2", muscles hanging from his joints like fraying twine, unable to reliably control the most basic of bodily functions. Even a port-a-potty at the bedside didn't guarantee a night of no accidents. Breathing required oxygen. Eating was painful, each bite of food hit his stomach like a punch. Not that he had any appetite, he ate only a few bites a day and that was to satisfy everybody who was nagging him. He knew they wanted him alive, but they didn't understand what it took. Sometimes, he felt like he was the only person who knew what was going to happen.

Four years ago, he'd sat in a brightly lit medical office and, stunned, heard the words "You have testicular cancer, and it is incurable". The athlete in him denied this, focusing on what the doctor said next, "but we can treat it for some time, there is lots we can try." Hell, he was an endurance athlete, this would be easy compared to that, he thought. He was a winner, this was no different. Just look at Lance.  He would not only be treated, he would thrive.

Four years later, he knew differently. Enduring a 100 mile run or 140 mile triathlon was difficult, but it ended. You prepared, you built up to it, you fueled your body properly. Once the day came, you powered through cramps, pain, exhaustion, but you knew it would have a triumphant ending. When you finished, you then rested, you recovered, you treated your body right, and if you wanted to, you did it again.

What he didn't know was that treating end-stage cancer was like the run that never ended. When you stopped, you died.

He recovered well from his first surgeries and initial chemo was a breeze; his pain was minimal. He was able to keep working, keep exercising, although he grew increasingly tired and weak.  "Peace of cake", he thought.  "Doable."

48 months later, on constant chemo, cancer continuing to grow, subsequent surgeries, septic infections, hospitalizations, it had all taken its toll. 500 appointments later, hundreds of scans and tests, on his 11th chemo, tumors taking over, pain his constant companion, he'd had to quit the job that gave him satisfaction, quit the competitions that were his love, go on disability to help his family, become a drain on society rather than a contributor..

Him.  A former triathelete, successful in his career, successful in supporting his family. Disabled.

He now shuffled through his days, often pulling an oxygen cart behind him, lungs too filled with tumor to go without supplementation for long. No more romantic nights with his wife, no more taking care of her.  Quite the opposite.  His wife, his pretty wife, had to do everything, down to cleaning his soiled bedding, and he no longer felt like a man. She hadn't signed up for this and he felt guilty.  She went to work, she drove the kids to school, to events, she did the shopping, she took the animals to the vet.  She even coached the kids' games. There were days he mustered the energy to watch, sitting on the sidelines with a blanket around him and a stadium pad protecting his bony butt. He cheered the kids on and shivered in the 80 degree cold.

He was always cold.

And yet he wanted to live. His wife, his children, they were important to him above all. He learned to give up the things that formerly had given him a sense of completeness and success - races that made him powerful, weightlifting that made him strong, a job that supported his family, and learned to became satisfied with what was left: his kids giggling, playing a simple board game, laughing over a TV show, an hour or two without pain, sleeping through the night.

It would have to be enough, and he wanted it to last.

One afternoon, he was home watching TV when the doorbell rang. He slowly got up to answer, pain in his back and stomach increasing, nausea beginning as it often did when he stood up.  He opened the door to find a perky, athletic looking young woman standing there in bike shorts. "Hi!" she said cheerily, barely looking at him. "I'm collecting money so I can ride in a 1000k bike race to support testicular cancer. It's a terrible disease, my good friend had it a few years back,  and now he'll be riding with me."

The man sighed wearily.

The girl continued, pony-tail bouncing,  "If I earn $3000.00, I can race for free and half the money goes towards my charity, which is the Tiny Balls Foundation.  They provide information to middle school boys in gym class so they can learn to 'check their balls'.  I have several levels of sponsorship you might be interested in. The first one," she paused and smiled big, "is the Nutsack Nipper, which is only a buck. For that, I will glance and point at your fly and give you a wink." She laughed and said, "I'm sure your package is worth it and we can support cancer for a $1.00!  I'll even let you take a picture of me pointing!"

He stared at her.

She continued. "Level Two is Nads No More. For $5.00, you get a squeeze ball to remind you of what some men can't do anymore,  and I will personally give you a shout out on YouTube as soon as the race is over."

He shook his head and tried to shut the door, but his oxygen tank got in the way. She suddenly seemed to take it all in, the tank, the bathrobe over his distended belly, beanie covering his wispy hair, his unnaturally thin body. He said to her, "I have advanced testicular cancer."

She went on.  "Oh, I hope you're okay.  Like I said, I had a friend who had cancer and he only has one ball and is fine now and his wife doesn't even mind,  so I know what you are going through!  He's such a hero!"

Confident, she said, "I'm sure you'll be fine, nobody dies of testicular cancer anymore,  and you must want to donate then, huh? You can really help cancer patients if give me $10.00 for the Hairy Cherry Package.   Hah, package, get it?"  she giggled.  "For that, I will give you a Red Solo Cup that you can use at my race to fill up with beer as many times as you want!"

The man said, "Aren't you aware that alcohol is linked to cancer? Besides, it's unlikely I'll live to see your race."

"Oh, sorry" she continued, as if she didn't hear. "My grandma died of ovarian cancer so I know all about it. Wow, she really suffered right before she went, I hear.  Okay, how about the Stolen Family Jewels level then? For $20.00 you get a Crotch Rocking Athletic Cup as well as a pack of condoms!   Or, maybe our corporate sponsorship would interest you, our Hanging Brain level. Your prize is an hour with a hooker!"

She handed him a flyer, which had a picture of a squirrel wearing a jock strap, colored purple, with a smiley face on the front above the phrase "Show your support, save the nuts" on it.  She had also included suggestions for ways people could show support for those with cancer, miraculously all of which also helped her:  cheering her on as she races, tweet her campaign to raise money, contribute extra to her so she could also buy a new bike and ride in more charity races.  There were, of course, incorrect statistics about cancer as well as an incorrect synopsis of Lance's story.

"Save the nuts," he thought wearily. "How about save the men?"

The disease that had taken him from a strong, athletic husband and father to a walking skeleton, which had robbed him of his future, would soon leave his wife a widow and his children fatherless,  was a now a method for everybody to make a dollar. The "Tiny Balls" Foundation, he knew, did nothing with the money they raised except print wristbands for teens to giggle over, and not a dime went to research to find a cure. Their popularity meant everybody and their mother wanted in on the action, hoping to prey on the sympathies of others.   Who says no to helping cancer patients?

This disease, the one that had amputated two of his body parts and taken his sex drive, that had taken part of his liver, colon, his lungs - his manhood - and soon will claim his life, was just a way for this young pony-tailed girl to make cutesy, immature jokes while trying to grab their piece of the testicle pie.

Of course, this wouldn't sink in to her if he explained it.   She wanted to run a race and had found a way to get others to pay her entry fee, no different than all the corporations hoping to up their sales by slapping a purple ribbon on a product and donating a few cents to the Tiny Nuts foundation.  Whether their product may cause cancer or not is irrelevant to everybody.  You can't keep the machine going if everybody is cured.

He thought sadly that without even realizing it, this woman was using her friend's pain as a tool to get what she wanted, and the suffering of others was just an abstraction to her, even when right in front of her.  Her grandmother had died of cancer?  A story she could use to make her greed okay.

It seems the only people who recognize the fraud this type of fundraising is and how much pain it can cause are the ones who die of the disease.  And, they don't complain for long.

The man gently shut the door, slowly pulled his oxygen cart back to his chair, sat down, shut his eyes and waited.





What if there was a month for men's cancers? Would it be treated with the same childish focus on body parts and the same disregard for human suffering as breast cancer is in October?  Would everybody try to make a buck?  Would we have tee shirts that say "Save the hard-on?"  Would men walk around in shirts that say, "Yes, my balls are gone, the real ones tried to kill me?"   The shameful part of all of this is that women started it, and women perpetuate it. 

This disease has nothing to do with breasts. It's about having cancer.  In some of us, it becomes a fatal, incurable disease. And, those of us who do have advanced cancer suffer in unimaginable ways that changes our perspective.  Even a women with an earlier stage cancer can't understand it - unless it happens to her, of course.   October and its focus on breasts and cutsie-pie pink and selling products is demeaning to woman who are going through unimaginable struggles.

Would men let it happen to them?  

The Trap

Wednesday, I saw my oncologist to get my most recent scan results - the scan that I hoped would show how well SBRT has worked for me.  What I wanted to know - what we all want to know - is this: "Did those magical gamma rays kill the cancer?"

I fell into the cancer trap, even knowing it was there, teeth bared and waiting to snap:  I assumed I'd learn my future, that it would be there on that paper. For a while, I forgot that none of us can know that,  whether we are diseased or not.  These scans make us think the impossible is possible.

I sat in the exam room until my doctor came in.  He looked at my blood tests and said they looked fine and then opened the file that had my scan results.  He read the impression section to me.  "There is decreased enhancement in the region of the porta hepatis, within the fiducial markers, likely from radiation change.  A cleft of decreased density is likely related as well  ....  There are no focal enhancing lesions to suggest residual or recurrent tumor."

I smiled, because that sounded like pretty good news.  I told him I was going to put it on my fridge with a big fat gold star.  I instantly imagined that with that single line, I will get my dream of seeing my son graduate from high school, which is 8 months away.  "No lesions to suggest residual or recurrent tumor."

Reprieve.  I'm going to live.

Now, I know metastatic breast cancer is like playing the game of whack-a-mole. Odds are it'll rear its ugly head again and soon; I'm certainly not cured.  Only 15% of women with metastatic breast cancer are alive five years past the diagnosis and I'm barely into year three.   But with those results, for now, and maybe a while, I felt that I'd reset my doomsday clock.

My oncologist continued, "we'll will keep up with the zometa, herceptin, and perjeta and I'll see you in two months."

"Two months!" I exulted.  I have not gone two months without seeing a doctor in years; that right there tasted like victory, confirmation that I'm on the path to success.

Sternly, my oncologist told me that next time he sees me I must weigh 95 - a five pound gain. I nodded meekly but my mind spun that comment, too,  into healthy gold.   "There is no reason not to gain weight" my thoughts whirled.  "Surely, in two months, my appetite will come back, the pain will be gone, and I can eat without discomfort."  I went further into the World of Health.  "Maybe all pain will be gone, maybe it's just scar tissue that will heal.  Hey, if my body isn't all caught up fighting cancer, many things can happen:  my weight will improve, my energy will heighten, my need for pain meds decrease and my life become more normal. Maybe I can go on a vacation, maybe I can start a business, maybe I can write a book, maybe I can finish my scrapbooks, maybe I can get the house clean. Certainly, I can get up to 95 pounds.  Heck, maybe I can go for 100, 105 even."

"Maybe," I thought, "I can be normal."

Some serious dreaming right there.  The trap had me but good.  I imagined my future all the way home.  Not like you would imagine the future, because I know I still am destined to die of cancer.  But, I started believing in time again, planning for things days and weeks ahead, simple things like buying new boots for winter, some baby clothes, maybe some clothes or a new coat for me, going on walks to improve my stamina, volunteering at my old school,  planning a vacation, stuff I hadn't thought of in ages.  I even got annoyed at how uncomfortable my implants are, something I'd accepted without question until that moment.  "I have to live with this forever?"

Yesterday, I had an appointment with the radiation oncologist who directed this portion of my care, also to go over the report. As I was escorted back to the exam room and the doctor entered, I smiled big.  I knew he was going to give me great news; after all, I'd had the report.   He was going to tell me, for sure, that he himself had conquered my cancer.

And, as he pulled up my films, he said something surprising, "I'm not that excited about it."  He pointed out before and after pictures.  He didn't see that much difference between the scan I had pre-SBRT and this one.   The changes,  he said, were minimal.

Okay, don't get upset.  I'd forgotten that we had started from a pretty good place - my pre-planning PET scan had shown that the Perjeta had been very effective on the cancer, and the SBRT was going to be done on something already becoming inactive.  So these results reflect that reality.  But they don't show a huge cancer mass murder, like I'd hoped.  I didn't hear "You don't have cancer, you are NED" like I had wished. But no new cancer has grown either, so that's important.  His news was no different than the news I'd gotten from my other doctor.    I'm stable.

I remembered at that moment that it didn't matter; I don't want to live from scan to scan when it's all an illusion anyway.  A week from now, I could be diagnosed with brain mets.  Two years from now, I could be as healthy as I imagined early on.

There is no way to tell from one scan.  The trap let me go.

The doctor asked hopefully if I was continuing with chemo, a slightly deflating statement.  I explained that I was not able to because my white counts still have not recovered, but told him I was still on herceptin/perjeta/zometa, a combination that seemed to be working for me and he was happy to hear I would continue it.

We agreed to do another scan in 3 or 4 months, whether it's ordered by my oncologist or him, and he agreed to see me again to go over the results.  I do like to get both of their perspectives.

Doctors are always a bit more cautious than patients, as they should be - we have one experience to draw from and they have thousands.  It's good to have that discerning eye, or two, to remind you that you still have a critical disease and not to allow your mind to go places that will only become very disappointing, like vacations to Tahiti and Disney and visits with great-grandchildren, which still are not going to happen, no matter how great that one scan is.

It is not easy to stay out of that trap - the trap that is your imaginary future.  And, you have to remember, like my RO said, "If you feel good now, that's all that matters."  

There are not a lot of people who get out of metastatic breast cancer alive.   But there are none who get out of life alive either.  So the question becomes one of time, and one of trying with imperfect methods to peer into the fuzzy, foggy future and see if you are standing there, and we use the illusion of PETs and CTs to try and cut through the muck.  I think the truth is, we just can't know with crystal-clear perfection what is going to happen to us, no matter how many machines peer into us, or how much contrast solution we are injected with.

What we have is the here and now.  We have our families, what's in front of us, and if we feel good, we are good.  It's as simple as that.

The previous years have not been easy ones - the game of whack-a-mole is a hard one to play, because what we are whacking is our own selves.   The trap I fell into was thinking that somehow, this scan would be different - this would be the one that allowed me the luxury of breathing room, that would give me some normalcy.

And, that will never happen again.   I'll keep playing the game, trying to beat disease back, having constant medical appointments while trying to avoid the trap of the future and instead,  just accept and enjoy the here and now.   Those are the cards I was dealt, so that's what I'll do.

When Good Boobs Turn Bad - Book Review

People are always nagging me encouraging me to turn this blog into a book.   And, you know, if a publisher offered me a fat advance I wouldn't say no, but guess what?

It's too late. The book I would have written has just been published, and it is called,When Good Boobs Turn Bad: A Mammoir by the hilarious Jill Foer Hirsch.

After promising to review her book, I opened it intending to read just the first page.  I wanted to see her writing style, and then I was going to go to sleep.  To be perfectly honest, I've read a lot of bad books and articles about breast cancer, and I was half expecting another snooze-fest.  I'm happy to say I was completely, utterly wrong.   Despite my advanced stage worries, I couldn't put her book down, and Jill, you cost me a night's sleep.  And, considering I take 2 mg of Ativan every night, that's no small feat.

I'm not kidding when I say her book is the best memoir about early stage cancer I've ever read, and also not kidding when I say I'm super jealous that I didn't write it.

She's wry, descriptive, humorous and helpful, all at the same time.  Her stories about dealing with cancer are LOL funny, and she sprinkles anecdotes with  tips on how best to manage breast cancer treatment.  She's both engaging and informative and writes in an accessible, down-to-earth style.  She's included photos of herself at the various stages of treatment, making it seem like it was written by your best friend.  One with unmanageable hair, just like mine yours.

At first, I read with suspicion.  I mean, this chick is hilarious -  and I thought I had the market cornered on cancer humor.  Did she steal from me?   She has my attitude about dealing with breast cancer down pat - that's to plow your way through it with a minimum of tears and a maximum of giggles.  She was determined to find the amusing parts of the experience (and there are many) and focus on those rather than fears and pain.  Naturally, I scoured her book to see if she had stolen any of my jokes or if she had copied my blog because really, can there be two women who laugh about cancer?  Well, apparently there can be.  She's pure original.

She begins with her diagnosis, Stage IIB cancer, and goes on to discuss her treatment, from testing to surgery and on to chemo.  She shares the options available to her and why she made the choices she made. She also regales you with her fashion challenges and the awesome food she got to eat. (That reminds me - bring Jill a casserole, please.  She is brave and strong and deserves your attention.)

She describes the exhaustion that comes with chemo by saying, "Even my fifteen year old cat was less lethargic than I was.  I looked on in awe and wonder as she got up every couple of hours and was able to stretch and change sleeping positions.  You know it's bad when moving at the speed of an old, lazy cat is your goal."   And, OMG, I have thought that about my 14 year old cat many times.

 She describes her flap surgery, which is not "blue skies and fluffy white clouds" and which caused her several complications.  You and I would freak out about having an open sore on your stomach pouring fluids of various colors - but she was grateful because it gave her more writing material.  That's how crazy she is.

I have always believed the best way to get through a frightening, tragic, scary event is with humor.  Jill obviously believes this too.  And, she did what I couldn't do - she wrote my book.

Even though I didn't write it, I believe this book should be given to every women who has a diagnosis of early stage cancer.  Put it in a gift basket with a bedazzling kit for jazzing up those hospital gowns, and a copy of my blog URL to assuage my jealousy.  Not only will this book help a woman know what is coming - I still remember how confusing those early days were -  but it also gives them a guide on how to emotionally manage a scary event with humor.  Anything that helps lighten the load is a good thing, and this book definitely lives up to the statement that "laughter is the best medicine."

Most women do survive a cancer experience and Jill has made it abundantly clear that she expects to be one of them, and her attitude is infectious.  She's currently a year past treatment and doing well enough to write a book, so that's also encouraging.

If you want to see a book written by me, then go buy Jill's book.  It's as close as you'll get. In the meantime, I guess I'll stick to pendants.

When Good Boobs Turn Bad: A Mammoir:  funny, homey, smart, helpful.   (The links will take you straight to buy the book in paperback or kindle.)

This concludes the review of this great book.









(Part II of How to Survive Cancer will be coming soon, I promise)

My first necklace

EDIT!  The product sold ALREADY!  That might be a record.  Thank you, S.  I will send it out on Monday and I will have more up in the coming days, all unique and different.



Hey boys and girls. A quick note before my next two real blog posts come up.

I'm feeling healthier (yay!) but obviously can't work.  I also have a child who is a senior in high school and a husband talking retirement.  I have decided to sell necklaces to help add to my son's college fund and senior year activities.  I realize that I may only buy a tassel, even with lots of sales, but that's okay, I am contributing.

I fell in love with these glass tile pendants and thought that I would make some.   I like them so much, I thought you might too! I have lots of designs drying and lots more in the works.  In fact, there is glue all over my house and my cat has a toothpick stuck to her tail.

There are glass tiles out there, but so far, mine are unique in glass tile world as they are collage with embedded items, not just pretty paper.

So, below is my very first one that's ready for sale!  How exciting!

Some coming up are cancer-related (and yes, pink, but I will do all the cancer colors, and in honor of my friend Sarah, gone over a year now, teal will be coming up soon.)  Of course not all of them are about cancer.  

Each one comes with a hand-written letter about why I made that particular design. I also have a liberal return policy - if you don't like it, ship it back, no questions asked.

If you order from me, I will mail it within 2 days after payment. Remember, I'm new to jewelry making but I think they came out okay, and I wear them so I figured you would too. I will do a special page to put them up when I get photos taken of more of them (I'm waiting on gold pieces) but for now, I was so excited that I finished one that I wanted to share it immediately!

Don't worry, Part 2 of my "How to be a Survivor" is coming up soon, as is a special review about a book I read.

In the meantime, even if you don't buy, I would appreciate a like on facebook!  Oops, I forgot to watermark it.....next time.  :)

Here is a photo, apparently once they are sold the entire listing disappears.  But you can see what you missed:
 

How to be a Cancer Survivor - Part 1

An online post about 9/11 sparked a conversation about whether we should "never forget" or whether we should "move on" from that terrible day.  My argument was that the two are not mutually exclusive, they can both exist at the same time.  My example was cancer survival.  Many woman move on.  They can never forget such an indelible experience which leaves such visible scars,  yet they manage to put it in the past - it becomes a bad dream they remember once in a while.

Then there are those who don't move on; who daily talk, think, and live cancer  - sometimes years past diagnosis and treatment.  I'm not talking about those of us like me, who are in endless therapy.  I am referring to women who were early stage, whose treatment is long past, and yet their cancer diagnosis becomes the defining moment of their lives; their identity.  They are stuck in one moment in time.

That is understandable to me -a breast cancer diagnosis is a tornado that has attacked the very foundations of home, and nobody is taught how to rebuild.

What do I mean?  Monday, a woman finds a lump.  By Wednesday, she is diagnosed with breast cancer, details as yet unknown.  She is going to die, she's sure. By Friday she's learned there are types, sub-types, and more sub-types; she's floored to learn it isn't really one disease after all.  In the coming days, she learns jargon such as HER2+, ER+ or ER-, Triple Negative,  the TNM staging system, Oncotype DX, BRCA genetics.  She must learn what a sentinel node biopsy does, statistics and odds about types of breast surgeries, radiation facts, differences in breast reconstruction. She's poked and prodded and thrown into MRI after CT, sees surgeon, plastic surgeon, oncologist and back again.  She must make crucial decisions very quickly, ones that she feels unqualified to make based on information she didn't even know a week or two ago. She worries that it is life-threatening to take the time to become informed enough, so she dives in and spends days and nights reading about breast cancer: books and websites, forums and blogs.  She reads journal articles with a medical dictionary by her side.  Her life truly becomes consumed by cancer; it is a full time job at first, often with four or five appointments a week, and tons of homework.  She's thrown into this cancer medical blender and can't get out.

Personally, she is bombarded with friends and relatives telling her about somebody they knew who died of her cancer, or giving her wacky alternative theories or sharing some diet they believe kept somebody alive, and now she has to research those as well.  As decisions are made and treatment starts, she takes time off work and normality, and her world changes to that of statistics and odds, scrubs and nurses, medical offices and waiting rooms.

She is the center of this world, and all eyes are on her. Doctors take seriously every ache she describes, nurses focus on her, friends bring food, family comforts her and appreciates her anew.  She's brave, admired, told she's remarkable and special, heck, there is even a special color just for her.  She is no longer the mom in the PTA, she's the mom in the PTA who has CANCER, and is treated accordingly, either with extra kindness or with unwarranted avoidance, but whatever it is, she is now different.

Eventually, she relaxes and becomes part of the process. She knows by first name everybody in the medical offices, she makes friends with other patients.  She learns she is not Stage IV, she is not going to die, not soon anyway.  The terror lessens but doesn't leave entirely.   It is comforting to see a doctor regularly, to know that medications are actively fighting cancer. She may spend a year being treated, or a few short months, but it doesn't matter, it's CANCER and it's her life.

Then her last therapy is over: the chemo bell rings or the certificate is handed out or her rads end or surgical staples are pulled.  The long-awaited day occurs -  she's finished. She's out the door.  She's declared cancer-free.  She's back to her old life.

And many women reel, not knowing what to do.  It's like being dropped into another country with the same name as the old one, one that looks familiar but is no more.  She is left with a mangled body, often with mechanical defects, body image and sexual changes, medication side effects, conditions nobody has told her would happen,  She has a body that has made CANCER, that has betrayed her,  and she doesn't know why and nobody will ever be able to tell her. And, it can come back, early stage or not, even years later.  Many women enter a psychological prison of fear.

Fear of having to do it again, of it coming back locally or fear of it metastasizing and that she will end up like me, end-stage.

I am certain that many women who have been through cancer treatment develop a form of PTSD due to the intensity of the experience.

But all she is told now, once therapy is done, is that she's a Survivor.  She's given unhelpful phrases like "New Normal" and to figure it out on her own and get back to life with no details about how to do so. She doesn't know which aches and pains are side effects or leftovers from treatment, which could be cancer, which would have happened anyway (yes, cancer patients get normal-sick too).  Nobody has explained that tamoxifen causes bone pain, that shoulder problems are common, that scans are frequently open to interpretation.

Friends and family, having watched helplessly by the sidelines, are ready for it to be over, and begin to get frustrated when it doesn't end for her like it does for them.  She feels pressure to move on, but doesn't know how.

Many woman can do it; they can take a deep breathe and move forward and put cancer in the past.  They jump right back into the pool of life, shocking and cold as it may seem.  Many cannot, through no fault of their own.  They dip a toe in and pull back, dip a toe in and pull back, over and over, never getting in over their knees; the fear is too cold, their heart races with each dip.  Some women become stuck in a cycle of fear and appointments, fear and tests, the fear being a return of cancer and the tests are because the doctor must take complaints seriously. "With your history" becomes the catchphrase of her life.  A cough? Probably the flu, but "with your history" they run extra tests, which send women spiraling back into cancerland, certain the result of this test will show spread.   Some women live that way for years and are either always miserable or have periods of calm and peace pierced with flashes of misery.  "My back hurts.  Is cancer coming back?" they wonder, even the day after falling off a ladder.

These women with early stage cancer sometimes write me, the dying one,  to ask for help, that's how desperate they are. "How did you know it was back?  How do you do it?  How do you live with fear?"

It's a huge problem that the medical world doesn't address.  In one of those many cartoonish brochures you receive explaining treatment options,  there is usually a line or two about "woman may feel lost as treatment ends, but that is normal." and ..... period.  Okay, it's normal.

Now what?

I really think there should be a post-therapy cancer class, so women can learn to identify when to be nervous, what to expect, and given tools to manage their lives after treatment.  Included in this class should be physical therapy so women who have had reconstruction can learn that their body function has changed and strengthen the muscles necessary to avoid pain that may now be normal for them.  It never fails to amaze me that they can remove a body part, split chest muscles in half, put an implant inside, and then expect people to have full functioning with no re-training in balance, or strengthening in other compensatory muscles. Many, many women suffer shoulder and back problems post-mastectomy - and most of them think for a while that it is cancer returning.

Yes, I am the terminal one, the women everybody is afraid of becoming.  But still I understand what women go through.  I only had a few months after treatment ended before being diagnosed with mets, and in hindsight, I was likely Stage IV from the beginning.  But I didn't know that, and so I understand the nerves that come.  I did not live in fear those months, on purpose.  In fact, I was about to shut this blog up and go away and leave cancer, in all its forms, behind.

I cherish those months before I was diagnosed with metastatic disease.   I look back on them as last vestiges of my thinking I had a future, with plans and dreams like a normal person.  I miss the days when I could see something online and not think, "Oh, my friend will like that for Christmas, I hope I'm alive to give it to her."

I want women to cherish their time post-cancer too.  Whether cancer does come back a year later or more likely  never, they should love and enjoy their lives as quickly as they can.  I don't want women to look past beauty to the fear.  I want them to look past fear to the beauty.

I know they'll never forget, but I want them to move on.



In Part 2, I will have suggestions on how to accomplish this goal, and steps on how I had planned to do it.




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