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I never asked “why me”.  I always thought “better me”.

Today is one of those days that reinforces that.

We have a good friend whose girlfriend has been diagnosed with breast cancer.  I’ve never met her.  But through him I am able to help.  I can offer advice.  Help for nausea.  Advice on hair loss.  Disability is available.  It’s a reprieve.  Take it.  I have hats and beanies.  They are hers for the taking.

It feels good.

It feels right.

It feels like that year or so five years ago weren’t for naught.

I don’t pretend to know God’s plans.

I really have no credible idea why I am still here and others are not.

God knows.  He has vision.  He sees the big picture.

I know I’m the Cheese.

I know not everyone survives.

I know I may not always survive.

But I also know that I can help.

I offer hope.  I offer help.  I offer insight.

How can I run from that?

Who can really ask for more from life?

 

Cross-posted to Mothers With Cancer

Feeling Like the Cheese…

I often compare my cancer experience to a game of Farmer In The Dell.  Only in this version it’s Cancer that takes a wife… and a child… and a nurse.  And I, well, I am the Cheese.  And I stand alone here in my survivorship.

That’s how it feels, anyway…

Ironically, at the last appointment, my oncologist thought to talk with me about “moving on” with my life since I’m “cured” now and all.  Moving on from self-identifying as a cancer patient.  Moving on from surrounding myself with cancer blogs and cancer patients.  Moving on from the death and loss.  Is that even possible?  She postulates that at some point in survivorship it becomes unhealthy to continue hanging with the cool cancer kids.

Yeah… I get that.

That whole “moving on” thing has looked particularly appealing in the last week or so, as we of the breast cancer and Mothers With Cancer worlds hold virtual vigil at the bedside of Susan Niebur.  She has single-handedly done more for breast cancer education than anyone I’ve ever known.  Susan is  one of those people who attract others.  In fact, nearly every woman I know in the cancer world, I know because of or through, Susan.

And the world is going to lose her.

Cancer will take another wife… a mother… a planetary scientist… an advocate… a friend.

I can’t be the Cheese!  I refuse!  I will seek out the unwilling members of this effed up club!  I will support them!  I will encourage them!  I will cry with them and for them as I clutch their hands tight, refusing to let them leave the circle, too!

It’s the least I can do…

 

 

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

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.

What Blindness Cannot Do.

We’ve all seen this touching poem written by an unknown cancer patient.

WHAT CANCER CAN’T DO

It cannot cripple love, it cannot shatter hope

It cannot corrode faith, it cannot eat away peace

It cannot destroy confidence, it cannot kill friendship

It cannot shut out the memories, it cannot silence courage

It cannot invade the soul, it cannot reduce eternal life.

It cannot quench the Spirit.

All this is true, and more.  I am living proof.  But it’s not just true about cancer.  It is true about any situation in our lives.  I know I have passed my positive attitude on to Danny.  I hope he keeps it throughout his life.  I offer this regarding blindness:

WHAT BLINDNESS CANNOT DO (by me)

It cannot silence sound.  It cannot stop creativity.

It cannot dim vision.  It cannot eliminate motion.

It cannot reduce self-respect.  It cannot erase intelligence.

It cannot still hands.  It cannot destroy heart.

It cannot limit dreams.

 Here is my internal inspiration!

Danny playing at Big Sur Creek

And here is the inspiration found in my inbox this morning.  A blind photographer.  Can you imagine?  No?  Well thankfully Pete Eckert could…

Amazing, right?  I wish no less for Danny in his lifetime.

Wanted: Your Parental Two Cents

Help! 

This is a touchy subject.  I wouldn’t be broaching the subject if I wasn’t at my wit’s end.  The whole thing embarrasses me… and Daddy-O.  Apparently, though, it doesn’t embarrass the one person it should!  Frankly, I just do not know what to do about my oldest son.

He steals.  He takes little things from stores – things he can fit in his pockets unnoticed like lip balm or those stupid silly bands.  He pockets small objects, toys mostly, from his cousins – though he is always quick to proclaim innocence and ulterior action.  I believe he pilfers erasers and pencils, etc. from the school book fair but can’t actually confirm it.  And, most recently, he has taken candy from a friend.

This has been going on in various manifestations since he was 3 years old.  The week before his 3rd birthday we went to the party store to buy stuff for his birthday party.  He asked for a mylar balloon.  I said no.  When I put him into his car seat I noticed something sticking out from the pocket of his sweatpants.  He had stuffed them full of latex balloons.  I immediately marched him in to the store and made him return them to the cashier and confess (in front of a long line of customers).  The cashier was embarrassed and dismissive.  “It’s not a big deal”, she said to me in front of Ben.  I stridently disagreed, took my son home and spanked his bottom (with my hand, thank you very much overly-concerned-about-corpal-punishment people). 

A couple of years later he took some lip balm from the local surf shop.  Then went out of his way to show me the item as soon as Daddy-O brought him home.  Busted by his own bragging.  He’s cute but not the brightest bulb in the pack.  Off he went with Daddy-O; back to the surf shop.  We asked that the owner call the police.  (There had been other incidents here and there that I just can’t remember now.)  The owner refused but did give a very appropriate lecture on the distrust for a petty thief and how they will be followed every time they enter a store.  We also made him pay for the item as well as return it.  Hit him in his pocketbook, so to speak. 

Fast forward to the last few months.  I suspect, though cannot prove, that he pilfered copious amounts of pencils and erasers from the book fair at school.  I can’t prove it because he says he bought them.  And he does have money from time to time.  And I don’t keep an inventory of what he has in the art supply category.  So I looked at him suspiciously and asked the question and raised my eyebrow at his response then let it go.  I dropped the ball, I guess.  Perhaps I should have followed up with the school… but I work and I’m busy and gah… that just seems like so. much. trouble….  and maybe a little bit I didn’t really want to know anyway.  sigh.   Same thing with those ridiculous silly bands all the kids are wearing these days.  Daddy-O bought him one pack.  One pack.  Next thing I know he has about 300,000 of them on his arms.  Where are they coming from?  Traded them at school.  Bought them at the market.  Blah, blah.  Again, no proof.  No pudding.  No trust. 

At Christmas time, he lifted a few flies from the Fly Shop in Redding.  I caught him pretty quickly when my Mom-Radar was activated by his suspicious behavior when I walked in the room.  He received a nice and appropriate bare-bottomed spanking and, again, he was taken to the store and forced to confess and return the items. 

Then last night he took a roll of Lifesavers from his buddy.  Stupid Lifesavers! And from a friend!  He’s losing his electronics through the weekend.  He’ll go over tonight and have to look his friend in the eye and tell him he took something from him.  The thing is, I don’t think it’s the first time he’s taken something from friends.  There is a suspicious PS2 game at our house when we never had a PS2.  He says his friend at Nana’s house gave it to him.  I don’t believe him any more.  On the other hand, why would he steal a game for a system we didn’t even have? 

So here is where you come in.  I don’t know what to do.  I can’t seem to get anyone to call the police on him.  Obviously, talking to him and shaming him in front of the merchants isn’t working.  He’s getting to that transitional age where things cease to be “stages” and become traits set in stone.  It’s a dangerous, messed up path he’s on.  I have a few ideas gathered from friends over the years of dealing with this.  Most are pretty harsh, which I like.  I feel like it’s going to take a rather large shock to break this cycle.  Here are some of my ideas.  I welcome beg for your feedback and suggestions.

Solution #1:  AN EYE FOR AN EYE.  Take away something of his each and every time he takes something from someone else.  Perhaps give said item to the victim as a form of restitution. 

My thoughts:  All for it, except I am usually the one buying his stuff so I’m really hurting myself.  Him, too, of course.  It’s hard for me to agree to giving away items I’ve worked hard to buy. 

Solution #2:  CAN’T TOUCH THIS.  Make him walk with his hands behind his back whenever he’s in a store/at friend’s house.  Stop him before leaving and publicly search his pockets.

My thoughts:  This one is going to happen regardless but I just don’t think it’s enough. 

Solution #3:  HUMILIATION.  My old sitter suggested this one.  When she had the same problem with her daughter she made a sign that said, “My name is _____ and I am a thief!”  She then had her march in front of the victimized store (I think it was a grocery store) for 30 minutes during rush hour.

My thoughts:  I really, really like this one.  I just don’t know what to do about location.  March up and down in front of his friend’s house?  Or maybe location isn’t the important thing…  Maybe in front of the grocery store for maximum exposure… 

Solution #4:  FORE WARNED IS FORE ARMED.  Make him (or us, perhaps) announce to store managers or parents upon his arrival that he is a thief and bears watching. 

My thoughts:  Nice.  But equally as humiliating for Daddy-O and I.  Don’t know if I’m that strong for the long haul.

Solution #5:  HUMILIATION TAKE TWO.  Make him a t-shirt to be worn either to school for a day or out and about on errands that says roughly the same thing as Solution #3. 

My thoughts:  Schools may deem this abusive.  And I do have concerns about alienating all his friends. 

Now it’s time for YOUR thoughts.  Please, please help. 

Note:  Drive-by’s wishing to only snark at my parenting skills without helpful advice are not welcome and can kiss my, well, you know. 

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.

What I worry about…

Hoo boy!  Today’s suggested topic from The Daily Post is “Are you stressed out?” Well, really… who isn’t stressed out these days?  If you’re not unemployed or under-employed or upside down in your house or already lost it you’re in the minority.  It seems like everyone is broke.  There are furloughs and lay-offs and foreclosures everywhere I look.

Daddy-O and I are working.  Thank you, God.  We are, however, trying to navigate the quagmire that is the Mortgage Loan Modification process.  They sure don’t make it easy but they do make it extra stressful so that’s something.  Heh.  Business has really picked up for Daddy-O in the last month or two so we’re starting to see a wee, tiny light at the end of the tunnel.  (Hopefully, it’s not a train.)  But that is not where my stress lies.

Danny needs scleral shells.  I’ve known about it for a while now but life always seems to get away from me.  When I got his school pictures back in November I realized how imperative it is that we start the process of getting his prosthetic eyes.  His eye socket seems to be dropping.  His face is becoming asymmetrical.  Not. Good.  What’s really not good, though, is the cost associated with the shells.

 

Danny's Kindergarten Picture

 

D. Danz & Sons is the company that services our area.  Luckily, I hear they are one of the best available in the prosthetic eye business.  That’s the good news.

The bad news is that the cost for each eye is $4,610.  Yep.  You read it right…  for the pair of shells it will cost a whopping nine thousand two hundred twenty dollars!  $9,220! The worse news is that my insurance will only pay $1,000 total.

I really don’t know how we’re ever going to pay for it.  NOT getting them is not an option, though.  sigh.  I never thought I’d need to worry about things like this since I have very good insurance through work.  It’s funny how you don’t realize just how difficult medical (and insurance) issues are until there is a problem…

I did get a point in the right direction from our Pediatrician.  They told me about a local organization called Jack’s Helping Hand.  I had heard about them before because they have a toy lending library for special needs kids.  What I didn’t know is that they have a program to help with medical/lodging/travel costs not covered by insurance.  I just need to hurry up and do the paperwork since Danny’s appointment is February 19th.

Please put in some prayer time asking that Jack’s Helping Hand accepts our request.  I honestly don’t know how we’ll cover the costs if they don’t.  Perhaps  we’ll do some sort of fund-raiser.

Anyway… that’s my big worry these days.  Not as big or bad as it could be.  Not so different from anyone else.  Just money.  Just with a little twist…