The “C” Word

In October 2011 I reached the 5 year mark.  Cancer-free for five fabulous years!  They certainly weren’t five worry-free years, by a long shot!  Early last year my blood work started showing some changes.  My Alkaline phosphatase levels were fluctuating.  They would go higher than normal, at my next appointment would drop back to nearly normal again, only to raise fairly drastically the next go round.  Very much like a roller coaster – a very not-fun roller coaster where I worried about liver or bone metastasis.  Of course, I got my very permanent, very meaningful 5-year tattoo in October anyway because I’m very, very stubborn like that.

So, this morning I had my 3 month follow-up appointment with my wonderful Oncologist, Dr. Villa.  She’s wonderful!  Incredible!  Awesome!  I fully and completely credit her (and God, of course) with saving my life.  I’ve even forgiven her for scaring the bejeebus out of me when I asked her what my recurrence risk was way back when in May of 2006.  She didn’t even blink an eye when she said, “90%”.  Jeez!  You could sugar coat it a little, Lady! 

Anyway, back to the appointment.  I’ve been very glad to have one coming up since I’d developed some sensitivity in some of my lymph node areas.  I’ve been losing sleep over it.  At least I think that’s what has been disrupting my night-time routine.  Maybe I’ve been worried.  Maybe a little bit.  Maybe.  So, imagine my surprise when she walked in to the exam room and told me that she was going to consider me cured. 

Wha?  Huh?  Did I miss something? 

Yeah, you heard me right!  The other “C” word. 

Cured! 

CURED! 

Cured, as in, gone.  No more cancer.  Not ever. 

OK.  Am I the only one that thinks this might be a bit of calling up the devil?  Scary stuff…

So she explained herself.  First off, my rogue Alk Phos levels have returned to normal.  In fact, my labs are “perfect”.  <Insert pride and preening here>  Then there’s those odds… the 90%…  Turns out most of those turn out to recur in the first 18 months.  Particularly the Triple Negative Inflammatory Breast Cancer patients, like me.  However, turns out that a small percentage of Triple Negatives have cancers that are particularly susceptible to chemo.  Women with this small percentage of Triple Negative cancer who manage to make it to the three, four and five-year marks also tend to never recur.  Never. 

Joyous of all words, that “never”. 

So here I sit with 5 years and 3 months of cancer-freedom under my belt and a new “C” word behind my name. 

Stella, cancer patient.

Stella, cancer survivor.

Stella, cured.

Cross-posted to Mothers With Cancer

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Milestones

I’m here today to share some great news.  Last week I hit my 5 Year Survivor mark!  What a milestone!  I do feel blessed to be here, in this place, standing in the sunlight of cancer-freedom!  The odds were against me being here.  Inflammatory Breast Cancer (IBC) is not a kind and gentle cancer.  The odds moving forward aren’t really much better but I’m confident in my ability to survive again! 

Five years ago I was given a 90% lifetime risk of recurrence.  I don’t think that has really changed after 5 years (but I’ll be sure to asked my Oncologist when I see her next!).  Unlike other breast cancers where recurrence drops dramatically after the 5 year mark (75% of recurrence occurs in those first 5 years), IBC does not.  Depending on which study you read, the overall percentage of women who reach 5 years  survival is somewhere between 52% and 56%.  That is not necessarily Disease Free Survival (DSF) like mine.  These figures include people like our own WhyMommy who are living with metastatic disease (Metavivors), but living nonetheless.  Still, in the not-so-distant past women with IBC survived only an average of 18 months after diagnosis.  We’ve come a long way, Baby! 

Yet there is still so far to go…  Survival rates for Inflammatory Breast Cancer at 5 years is roughly 54% (I’ll split the difference in the studies).  10 year survival rates are 35% and drops to 28% at 15 years.  Staggering!  Only 28 of every 100 Inflammatory Breast Cancer patients will live 15 years beyond their diagnosis.  These are horrible figures for a young woman’s disease! 

On to better news…  I celebrated my AWESOME MILESTONE with a big party and a tattoo to commemorate!

Don’t ask me why it says “in” counting…

  

Survival Tattoo

The pink ribboned butterfly represents my metamorphosis from cancer patient to cancer survivor.  The dandelion holds the wishes for my cancer sisters’ complete recoveries.  The floating dandelion seeds are for each of my years of survival (there are supposed to be 5 but I need it touched up).  The white (pearl) bird is for my Grammy who recently died of lung cancer.  The fuchsia one is for Andrea (Punk Rock Mommy) – my first IBC loss.  And the pink bird is for Sarah of Sprucehill whose passing hit me so very hard.  I hope to add many, many more floating seeds over the years and no more birds.  Ever. 

More news:  I’ve added a link on the HELP page for a Care Calendar.  My gf is using it for meal sign ups.  It’s easy peasy and it’s FREE! 

Cross-posted to Mothers With Cancer 

Choices and Changes

May 16th

The boys and I are just returning from a trip to my Grammy’s house – a visit that will most likely be our last. She has advanced lung cancer. I have mixed feelings about Grammy’s particular cancer.

Unlike breast cancer and most others, it is a disease of her own making. A bad choice made by a 12-year-old girl in a time when smoking was cool (and maybe even good for your health), that became a lifetime habit and, eventually, a death sentence. I regret her choice, and my Mother’s after her, even if they don’t. On the other hand, there is virtually no monies spent on curing the lung cancer of a smoker. There is really no hope once diagnosed. And the ticket bought with a 12 year old’s pocket money 68 years ago was for a humiliating, frightening and painful ride.

The very first symptom of Grammy’s lung cancer was a loss of balance. Did you know that? I always thought it would be coughing or shortness of breath. Not so. First she lost her equilibrium so that she was falling all the time. Then she began losing weight. Lots of weight. Her normal 160 lbs dropped to a mere 110 in weeks! She began using a walker, then a wheelchair with help, until she is now lifted into her wheelchair and back to her bed like so much dead weight.

Grammy did chemotherapy. She lost her hair. Then she lost her husband. Ultimately, she opted to have radiation on her brain to stave off the tumor-forming enzymes that would take up residence there. That treatment has now taken her memory and her very being.

Grammy now has dementia. Her short-term memory has been shot for a while now. She thankfully still remembers most people most of the time.

I was writing this post on my iPhone on the train ride home and wasn’t able to finish.  Here are more thoughts on the subject…

Not even two weeks after our visit with Grammy she is on the verge of being confined to bed.  Mere days after we left she didn’t know who my Mom was.  My Mom.  Her oldest daughter.  The one who lives with her and cares for her on a daily basis.  Sure, the lapse was only momentary but the pain of it will last forever.  This is how my Mom tells it…

Mom said something to Grammy that led with a “Mom, …...”, to which Grammy asked, “Why do you always call me ‘Mom’?”

Mom:  “Well… I call you ‘Mom’ because you ARE my mom.”

Grammy (with a semblance of clarity returning to her face):  “Ooooh, that’s right.  You’re my little girl.”

And she cries.

Such a small exchange yet so telling.  And crushing.

While we were visiting, Grammy momentarily forgot that my Grandpa Jess, her beloved husband, had passed several months before.  The next morning she asked if her twin brother was still “with us”.  She cried after each revelation.  What a horrible irony that before the blessing of eternal forgetfulness she must bear the loss of her loved ones over and over again.  Scabs ripped off.  Fresh wounds healing.  Scabs scraped away once again.

Grammy is so afraid she will be forgotten.  She’s worried we will only remember the end.  The cancer.  The forgetfulness.  The frailness and dependence.  As if.  In truth, it’s hard to remember that stuff.  When I look at her I still see my Grammy of old.  The woman who gave me the gift of writing.  My forever champion!  The loving, feisty, belching matriarch that introduced me to playing Hell.

These last months of being infirmed and bald are but a blip on the radar screen of her life.  I could never forget my Grammy.  As if.  But I pray daily that my boys always remember the consequences of the choices she made as a girl.

Advocacy and lymphedema sleeves

Yesterday, Susan made a big announcement.  She is one of my cancer sisters, founder and co-contributor at Mothers with Cancer, blogger at Toddler Planet  and Women in Planetary Science and friend.  She is also an astonishing advocate for, well, everyone. 

Susan has  lymphedema in her arm as a result of having lymph nodes removed from under her arm during her mastectomy.  It’s a real issue.  Lymphedema causes swelling in the affected area due to the build up of lymphatic fluids.  Once swelling has occurred it can really only be reduced a certain percentage.  In other words, the area will never again return to normal size.  The trick is to keep the are from swelling in the first place.  This is where  LympheDIVAs come it.  They have taken a sterile, ugly medical appliance and made it beautiful:  the compression sleeve.  I can’t imagine what it would do to my self-image if  I had to wear something like this all day, every day (not to mention what it would do for my hot flashes!).

   

When you buy a sleeve from LympheDIVA, though, you can make it your own, match your outfits, show your personality, feel beautiful

 

   

Of course, there’s a price for beauty.  Isn’t there always?  And LympheDIVA sleeves aren’t cheap.  In fact, as Susan’s lymphedema Therapist pointed out to her, many women can’t afford to buy sleeves at all, which causes the tissue in their arms to harden.  Here’s part of an email Susan sent to me:

Last month, I was lying on the table having my arm worked on as my lymphedema therapist tried to reduce the swelling in my arm.  I try to zone out a little, as it’s not all that comfortable, but we got to talking about my pretty lymphedema sleeves, which you guys have seen me wear around town and at BlogHer. 

Apparently, I’ve been living with my head under a rock, as I was surprised to hear her say, “so many of my patients can’t afford lymphedema sleeves, and their arms are so much harder.  The tissue actually changes, and their arms are stiff or puffy no matter what I do.”

Can’t afford lymphedema sleeves?  Well of course that’s true, isn’t it, as they cost $100 and up for each arm, and it’s important to have two sets – one to wash, and one to wear.  I started rolling solutions around in my brain.

So, being the giving woman and problem-solver that Susan is, she began looking for programs to help those in need in her little corner of the world.  She found none.  By happenstance and good connections, she was introduced to a foundation, Crickett’s Answer, who agreed to work with LympheDIVA and donate some sleeves and gauntlets for women in need.  Next thing you know, $12,000 worth of  lymphedema sleeves are now available through Crickett’s Answer for these women!!!

This is awesome!  Wonderful!  Amazing!  And generous!  But here’s the part that floors me.  Susan, is not just a cancer survivor, she is a current cancer patient.  She has two small boys at home, she works for NASA, and she’s had a recurrence of  her Inflammatory Breast Cancer.  She mothered and worked and rested throughout the spring and summer while she also underwent chemotherapy and radiation for a regional recurrence.  Now, this week, while making numerous phone calls to foundations, organizations and businesses in order to help other women , she had a PET scan which revealed six small spots on her lungs

I am heartbroken.  For me and for Susan and her family.  For the world really.  Susan is one of the good ones.  She is tireless in her advocacy.  She is dedicated to her family and her work.  She is generous to a fault.  And she will more than likely die of breast cancer. 

The bright spot in this scenario is that Susan is creating a legacy of epic proportions.  (Yes I said “epic”  even if it is a banished word!  I’m a rebel like that.)  She is raising the bar.  She is a role model in every sense of the word.  She is that better person that makes me want to be one, too.

Avon Walk – Take Two

When I signed up to do the Avon Walk for Breast Cancer this past July I had it in the back of my head that it would be a one-time thing; a goal to accomplish, an in-your-face to cancer.  The plan was simple:  I would drag my over-wight survivor butt up and down the hills of San Francisco with some high school girlfriends, reconnect a little, maybe lose some weight and enjoy a few photo-ops along the way.  Well, I did that all right!

I didn’t anticipate the feeling of accomplishment that participating in the Walk would bring me.  I didn’t expect to be part of a $5.5 million dollar donation for under and uninsured women to receive treatment!  I certainly didn’t foresee forging a bond with my teammates (and our own personal roadie!) that would extend way beyond the Walk into our wildly different personal lives. 

Participating in an event of this sort is physically comparable to a cancer patient’s treatment.  The similarities were startling.  Over those two days last year I relived my own cancer story.  I began the Avon Walk just as I did chemotherapy, cautious but positive I would make it to the finish line.  I trusted my training and I trusted my body to take me where I needed to go.  I knew I could depend on myself. 

I began strong but somewhere after the half-way point the road became much more difficult.  Doubts began to creep in.  Maybe I’d overestimated my capabilities?  What was I thinking?  The last 6 miles of day one were all uphill.  San Francisco hills!  Just to raise my eyes to the road ahead physically stopped me in my tracks.  It was too much to contemplate.  Yet quitting was not an option.  Too many people were depending on me – watching me.  I simply bowed my head and put one foot in front of the other, mumbling prayers and complaints with every other step.  It’s the same way I made it through treatment. 

By the end of day two my feet and knees had failed me.  My spirit was broken.  I kept going out of sheer stubbornness and the support of my team.  I was surprised to be re-learning the same life lesson from chemo – no one can do it alone; we all need help and support.  As I crossed the finish line on Sunday afternoon I was overcome with emotions.  I had once again pushed my body past its level of endurance and SURVIVED!  At that moment I felt that I could do anything!  And I CAN!

But I can’t do it without your help!  Though I’m required to raise at least $1800 in donations, I hope to raise much more with your support!  Last year your contributions and my walking raised $2400!!!  All donations, large or small can and will make all the difference in this fight!  I may make the difference for me or you or someone you love. 

You can make a donation to my fundraising campaign by clicking HERE.  If you would prefer to write a check, contact me and I’ll send you the information form. 

Let’s pool our resources and stop breast cancer today!  I am IN IT TO END IT!  Are you with me?

Good News for the Triple Threat

Finally!  Some good news about breast cancer from CancerConnect.  Well, at least for me… and all the other women out there who are Triple-negative and carry the genetic mutation BRCA1 or BRCA2.  Hurray! (Never thought I’d be saying that!)  That’s ME! 

For those of you lucky enough to not travel in cancer circles I’ll let you know what being Triple-negative means in breast cancer terms.  Most breast cancers grow when exp0sed to estrogen or progesterone.  This is called Hormone Receptor-positive breast cancer.  Patients with this type of breast cancer will most often be put on medication (hormone therapy) to block the effects of these hormones for 5 years after chemotherapy/radiation.  Also, about 25% of breast cancers are HER2-positive.  That means the “whatever” (human epidermal growth factor receptor 2, blah, blah, blah) in their bodies that controls cell growth and reproduction is working in hyper-drive.  These patients are treated with therapy to slow these agents. 

One would think that hearing cancer and negative in the same phrase would be a good thing.  Not so for Triple-negative breast cancer!  Instead, it means that there are less treatment options because there are no readily identifiable instigators.  Just to add insult to injury, Triple-negative cancer is more aggressive than others as well. 

I have already drawn the short straw in the genetic lottery by being a possessor of the BRAC2 DNA mutation.  And I have a Triple-negative breast cancer.  That makes me one of roughly 20% of all breast cancer patients.  AND I have Inflammatory Breast Cancer, comprising a mere 5% of all breast cancers. 

Geez.  I wonder what the odds of that are?

Check this out though…  The good news is that we rare Triple-negative birds seem to have a lower 5 year recurrence rate than other BRCA1/2 carriers.  Huzzah!  And just in time for my 4th Survivor Anniversary tomorrow!!!

In It To End It

I just passed the 300 mile mark in my training for the Avon Walk for Breast Cancer!!!  It’s hard to believe.  When I began training at the end of January I didn’t really think I’d be logging that many miles.  I also thought I’d have a hard time raising the minimum $1800 in donations. 

Happily, the money has pretty much raised itself thanks to extremely supportive friends and social networking sites.  Better than that, the walking has been a joy and a blessing.  I’ve loved (most every) step in the 300 miles I’ve walked so far.  I’ve reconnected with friends and nature.  I’ve seen the seasons change in an amazingly subtle time-lapse. 

Now I have only 8 short days and about 12 more miles of training walks before I join 3000 other fundraisers, survivors, supporters and friends in a walk to help end the horror of Breast Cancer. 

We will walk full circle, starting in San Francisco at Fort Mason, crossing the Golden Gate Bridge, hoofing through Sausalito and back recrossing the bridge to the Presidio district then Crocker Amazon Park where Avon has set up the Wellness Village.  Walkers will camp there for the night.   Not my group, though.  After walking 26.2 miles in a day I don’t intend to walk more than 4 feet to the bathroom.  Call me selfish.  Heh.  The next morning we will be back on the road to Market St, the Fisherman’s Wharf area and right back to Fort Mason where it all began. 

I have never in my life been into physical fitness.  I was a perfectly happy Couch Potato/athletic supporter.  Training for this challenge has been a big leap for me both physically and emotionally.  I think have finally recovered from my Breast Cancer ordeal enough emotionally to feel the need to represent Survivors as a whole.

I will walk in 8 days.  I will walk with old friends from High School.  I will walk with new friends I make along the way.  I will walk with those who have lost loved ones to Breast Cancer and those who, like myself, have lost living time to the disease.  Most of all, I will walk with the spirit of Diana and PunkRockMommy and Bobbie who’s lives were stolen from them far, far to early. 

Three hundred miles and four and a half years down in a journey to end Breast Cancer.  Only 39.3 miles and 10 days to go. 

I am In It To End It so no one else has to go through Hell again.