Putting on the Pink

Ironically, Danny first refused to nurse on my right breast in October 2005-- my first sign of cancer.  It's appropriate that I ended my breast cancer treatments nearly three years ago during Breast Cancer Awareness Month.

It took me only five weeks to realize that something was wrong with my body. The last normal weeks of my life.  It took another four weeks for a breast exam, mammogram, ultrasound, surgical appointments, fine needle aspiration and finally, a core needle biopsy, before my diagnosis on December 22.  Merry Christmas.  Nine weeks.  And life is never the same again.  Nine. Short. Weeks. And every month since has been Breast Cancer Awareness Month.

So I'm putting on the pink for the month of October.  I hope it helps even one woman do a self-exam!

In the meantime, however, I have a website to share with you.  It's called The Urban Dictionary.  It is a dictionary of slang.  Like Wikipedia, Urban Dictionary is publicly defined site.  As a parent I find this site extremely useful.  As an ex-kid I find it irresistibly entertaining!  In that light I offer you a few of my recently found favorite slang words.  See if you can figure out which one I submitted...

 Cybercondriac:  An individual that reads symptoms of illnesses on the net and begins to believe they're sick.

Half your age plus seven:  A dividing-line / rule, whereby one may not make a Romantic/erotic/sexual move toward someone who is not at least half one's age, plus seven more years.  Ha!  My co-worker is forever quoting this rule.  He swears that since he is 30 it is ok for him to date women that are 22.  Makes perfect sense until you reverse it.  By this calculation at 43 I should be able to date a man twice my age less 7 years.  That's 72 years old!!!!! Gah!

Restless Lip Syndrom:  When a person keeps interrupting a conversation and can't keep their mouth shut.  Hee...  I know a few who suffer from this.


Sticker Paralysis:  The effect caused by having a really awesome sticker and no appropriate place to use it. General symptoms include keeping the sticker in a drawer and never actually using it. Sometimes resulting in affixation remorse.

Nipple Envy:  What a woman feels when she sees another woman's nipple erection and hasn't completed her post-mastectomy reconstruction.  I so suffer from this!!!!!

Pisshap:  A mishap involving urine, usually after a mass amount of alcohol has been consumed.  This one has worked its way into my every day conversation!!!!!  And that's kind of sad...

999

That's how many days I've been cancer free. Nine hundred ninety nine days. I've had 23,976 minutes - healthy minutes - with my family and friends that I wasn't sure I'd ever have.

Tomorrow I mark 1,000 days of bonus life. Can I say how much I love that without jinxing it?

I saw Dr. Villa, my oncologist, today for my 999 day checkup. It was my eleventh 3-month appointment over the last two years, 8 months and 25 days. Actually, I forgot I even had an appointment today until I looked at the calendar this morning. I've been very busy. But I choose to look at my forgetfulness as a very, very good sign.

It means I've been feeling so healthy that there has been no reason for the insidious paranoia that haunts and torments all cancer survivors. It means cancer is not the focus of my life anymore. Is there any better news than that? I wasn't sure I'd ever see this day.

Is this what it means to be a survivor? Not a date on a calendar. Not five years. Not a countdown from date of diagnosis or surgery or end of treatment? Perhaps, it's just a feeling, instead. Survivorship. Surviving in body, mind and spirit. A true return to normal.

I hope so, anyway.

Cross-posted to Mothers with Cancer

Ob la di, ob la da

I have not blogging much at all of late. There's a lot of good in that and a fair amount of bad as well. I've been busy as a one-armed paper hanger. Work is backed up. I'm rarely away from my desk. I'm not taking my breaks or walking like I should so my weight is creeping upwards ever so slowly. Of course, all that busy at work makes my days fly by, too. When I get home there is a whole other life that gets crammed into the few hours between 4:00 pm and 8:00 when the kids go to bed. There's Little League practice twice a week and now games twice a week as well. Therapy for Danny once a week. The ever present laundry and my FaceBook addiction. And filling every spare minute in between is my photography passion.

That's the good stuff. I've been too busy living life to spend much time blogging about it. On the negative side, I'm coming up on my 25,000 mile (2.5 year) check up. As always, I start worrying out of the blue. This time my location of concern is my right hip. It has been hurting for a couple of months now. But the last few weeks it's become so sore that it wakes me at night and I can barely walk up stairs. So this check up, I get a bonus bone scan!

Tomorrow is my chest/abdomen/pelvic CT. Thursday is my bone scan. Then I have to wait until the 14th (!) before I see my oncologist for the results. I'll never make it. I haven't even had the scans yet and I want to call for the results already. Yet, I hope I don't here from her office before my appointment, know what I mean????

Of course, when everything turns out to be just fine I will have made it two and a half years beyond treatment for Inflammatory Breast Cancer. THAT will be a post in and of itself.

In sadder news, Mothers With Cancer lost another of it's own this week. Alabama Pink (Manda) of Whoa, Camel! fame has lost her battle with leukemia. She leaves behind a beautiful 3 year old son, Alastair and the love of her life, Adrian. You can read about her passing on Adrian's blog Rainbows! Puppies! Leukemia. Say a little prayer today for Manda's family.

Put on a happy face

I have to wonder about myself sometimes. Do I even know myself at all?

I had my three month visit with my oncologist today. This time I actually went in with a well-thought (yet hastily-scrawled) out list of concerns to discuss. But first, the important news... all my blood work was perfect! No indications that there is any cancer on the horizon. Amen!

Rarely do I have lists for my doctors. I usually breeze in all sunshine and smiles making the best of even the worst of situations with a few notable exceptions. I was decidedly unsunny when I arrived at the Emergency Room with a ruptured fallopian tube. Once Daddy-O and Ben got there the whole episode became fairly foggy, but I do have a vague recollection of thrashing around on the table in pain, sure I was about to die and praying out loud for God to save me or at least not take me in front of my son. Or when I bawled my eyes out pregnant with Danny at my regular doctor's office because I'd had undiagnosed bronchial asthma for months and was so physically stressed from just. not. breathing. that I couldn't maintain anymore! Otherwise, I might have one off-the-cuff question or two but that's it.

Today's list read something like this:

• Forgetfulness!!! Chemo-brain or old age?
  
• Still painful sternum
• Big bruise on arm since August!
• Wake up still tired. Low energy? Depression?
• Daddy-O says I'm a bitch... asks if meds can be increased... please?????

After regailing her with my many and varied tales of forgetful woe, Dr. Villa came to the shocking conclusion that I am doing too much multi-tasking. Put another way, if I put too many balls in the air one is bound to fall every now and then. Plus, I am getting older.

No worries about he painful sternum. I don't know why I shouldn't worry. She didn't say. I didn't ask. I'm ok with that.

Same thing with the ginormous bruise (which is really a mere shadow of it's former self) that has been on my arm since August. No worries. Eh.

I worried that I might be having a bit of depression (even though I don't feel like I'm depressed) as indicated by my waking tired after a full nights sleep, constant low energy, etc. etc. Those are the same symptoms I had the last time I didn't feel depressed after I had my miscarriage. Turns out I actually was. Huh. Who knew? So I thought I'd ask. But my Dr. V gets the big bucks for a reason. Her first question was if I'd been excercising, which I haven't. See asthma reference above which is triggered by cold. The virus I got in early December flared up the asthma and it's been too cold and/or windy for me to get outside and walk until this week. So no excercise for me. Click! 100 watts glaring at me. That accounts for both symptoms. See. I knew I wasn't depressed.

But apparently, I am a bitch.

I'm finding this harder and harder to deny. Though, in my defense, I do live with three testosterone-ridden humans and suffer with immeasurable provocation. Still, I do sometimes step out of myself in mid-rant and raise an eyebrow at my own hostility. At any rate, she is going to increase the dosage of my Effexor and see if that helps with my break-through hot flashes and these apparent nasty mood swings.

Daddy-O is lucky to have her as an ally.

As well as all that went, I left my appointment feeling less than satisfied.

We normally hug and gush and smile after leisurely minutes of familiar catching up. Today was more formal and doctor / patient like. She looked fairly sober as I left. No hug. No emotional fireworks display for the wonderful bloodwork and continued victory over cancer. I walked out feeling like a burden. *sigh*

Now I can't help but wonder if I am always so positive and upbeat because that is the way I've always been or because I crave approval.

The Journey's the thing

Three years ago yesterday my whole world stopped. For a split second anyway. Before it was thrust into a strange slow-motion, fast-forward kaleidoscope of cancer treatment and regrets for a future with my children that might never be.

Is there and other phrase that has the same effect as "it's cancer"? What powerful, life-changing words those are. Normally I would think news of a close friend or relative's diagnosis would be worse than your own. But after careful consideration, I think it's far, far worse if it is oneself. Particularly, if you happen to be the mother of young children.

When I heard the words for the first time my heart stopped. Confirmation. My worst fear. I cried.

Was I crying for myself? The prospect of death. The stress of all the medical tests. The relief of finally knowing. The fear of an unknown future.

Was I crying for my kids? Losing their mother at such young ages (that was the only end I could see for them). The confusion and pain they would feel because of me. The scars they would always carry. How those scars would change their lives.

Was I crying for my mother? Hearing that one of your children may die (not a certainty in her context for some reason). Bearing powerless witness as the child you created fights for survival. The pain that would cause - the unnecessary burden.

All those thoughts rushed through my head at once, scorching a path as they passed. Quickly in and out. Shock left in their wake. Mental paralysis. Yet my fingers started typing. As the doctor's voice relayed test numbers and statistics through the phone to some walled-off portion of my brain, I tapped off an email to co-workers. "It's cancer." Even in shock I knew it would be less painful to type than to speak those dreaded words.

I don't know how long that call lasted, but there was a tight wall of support behind me as I put the phone in its cradle. I couldn't turn around. I felt marked. Marked for death. An object of pity. Not strong. Weak - in constitution and capability. A failure. I ran away from their concern like a coward .

~~~~~

All through my treatment, I never successfully shook those initial feelings of failure and weakness. I'd failed to remain healthy. I'd failed as a wife; cashing in the vows from our marriage. In sickness and health. Till death do us part. I'd failed as a mother. Would I see my boys grown? Would I leave Danny with a father stretched too thin from providing and filling both parental roles to adequately see to his therapies and education?

Yet I survived.

Chemotherapy made me realize what strength is... and that I have it. It gave me time to work through that onus of weakness and failure. Time to realize that God's plan was perfect - even for my children. Even if it means that they may have to live without me someday. It gave me time to appreciate my husband for the man that he is and not the one I sometimes wish he was. And to be grateful for those in my life that have always been there for me, and even more that stepped out of shadows and into my life. Mostly, it gave me time to acknowledge my life, my loves and my future... in all its incarnations.

I am so pleased to be here three years and one day later. I am proud of the journey I've made. I am grateful that I have been able to walk my boys through a difficult time and prepare them for others in the future. More grateful still that those future tragedies just might not include their mother.

When I look back at that afternoon in December 2005 I see myself consumed with fear. Today I have replaced that fear with power and action. Daddy-O still refuses to mention the "C" word by name, choosing instead to simply reference his worry from time to time, knowing I'll know exactly what he means. As for me, I talk about it often - stripping cancer's power and making it my own.

I am more than a Breast Cancer Survivor - I am a Thriver.

People's HealthBlogger Awards

A few weeks ago I thought it might be a good idea to enter Mothers With Cancer in the People's HealthBlogger Awards. The Awards are for any bloggers who write primarily about health or healthy living topics. That's certainly MWC! Plus, the Awards are sponsored or invented or made up... (whatever) by a website that is forever sending me all sorts of email invitations that I quite rudely delete and ignore. A little more visibility with our target audience would be nice compensation for the probable carpal tunnel I'll eventually get in my Delete Finger.

Anyway, that great idea was a few weeks ago (I think). But, as I've been discovering, my mind is as water tight as a leaky dinghy at best... and a collander at worst. So I applied and promptly forgot all about it. That's me. Memory like a steel trap! At least that used to be the case. *sigh*

Frankly, I've been a bit worried about my memory issues of late. I can't seem to remember anything anymore. This isn't the run of the mill Chemo Brain. On Wednesday Ben had an appointment with Dr. Flaton at 10:30. I saw it on the kitchen calendar that morning. I left Daddy-O a note reminding him to let the school know I'd be picking Ben up. I told Ben about the appointment. I even remembered to grab the medication evaluation paperwork from the bookcase. Next thing I know, my cell phone is ringing and it's Dr. Flaton's office calling to ask if we were keepingour appointment. It was 10:45! Gah!

The day before I discussed with Wonder Sitter keeping Danny home from preschool the next day. I agreed to call his therapists & let them know not to show up. I couldn't even remember that long enough for the 3 block drive home. I did finally remember it 24 hours later as I was driving home from our office Christmas party. I am not going to go into the dozens of messages and reminders I have forgotten to give Daddy-O.

Of course, I worry about breast cancer metastasis to the brain. At least that's what I worry about when I remember there is something to worry about. Directly after the thought of mets enters my head I hear a resounding "Pshaw!" bouncing around between my ears. I guess I don't really believe I have a brain metastasis. It's just that I have always had a near perfect memory - particularly for daily minutia. It's frustrating to completely forget entire appointments and conversations. I imagine it's much like being a man...

Just in case someone Googles brain mets looking for some useful information and got my drivel instead, I will include a list of the 7 Typical Signs or Symptoms of Brain or Spinal Metastisis.

In any patient previously diagnosed with cancer, the following should raise the suspicion for a brain tumor:

1. A persistent headache with or without vomiting.
2. Seizures (Change in type or frequency )
3. Double vision, mental changes, speech difficulty.
4. Stroke (brain hemorrhage). Certain brain metastases, such as melanoma, renal carcinoma, and choriocarcinoma bleed easily.
5. Confusion
6. Any numbness, arm or leg weakness, back pain, difficulty walking.
7. Loss of control of bowel or bladder.

Numbers 6,7 are more common with spinal metastases.

Fortunately, I'm just forgetful (probably getting old) and a hypochodriac as the only symptom I can lay claim to is "mental changes". If I can remember long enough I'll say a little thank you for that during my prayers tonight.

In the meantime, click on the handy little button on the right and give a vote for MWC.

A Life Sentence

If you'll remember back a bit, I posted an excerpt from Ben's Sentence Completion List. This was an assignment from Dr. Flaton, the pediatric ADD specialist. As a very special treat for you today, I will post the remainder of Ben's sentences. And perhaps a comment or two if you are very, very good readers. Just a reminder, Ben is 8 years old.

1. I would like to be a scientist.

2. My mother loves chocolate martinis. (ack! choke! cough! While technically true, this was not high on my list of things I wanted the doctor to know.)

3. I cannot have a cell phone. (This is so true. But I am considering wrist watch walkie talkies with a mile and a half range.)

4. If I only had a cell phone I'd love my Mom and Dad. (Boy! They learn early don't they? The answer is still "NO!")

5. Girls _____________________ (He had no reply to that. I find that comforting on so many levels.)

6. I am ashamed of Danny having attitude. (Note that he's not ashamed of his own behavior. This answer is totally worthy of a presidential candidate!)

7. I am afraid of nothing. (Yeah, that's what I was afraid of...)

8. I like Pokemon cards.

9. I don't like summer school.

10. I love my Mom, Dad and Danny.

11. Boys are my friends.

12. Mother should do nothing. (I am not exactly sure how to take that... but I like it.)

13. There are times when I am bored.

14. I hate bullies.

15. It makes me sad to watch a kid being bullied.

16. My home is small.

17. Father should do nothing. (again with that?)

18. People think that I am stupid. (What!? After much teeth gnashing and hand wringing it turns out there is a snotty 2nd grader that asks him things like "what is 1000 x 200?" When Ben doesn't know the answer he tells him he's stupid. Grrrrr!)

19. Sometimes I think about skateboarding and fishing and surfing.

20. Nobody knows that I have ADD. (I can't decide if it's wonderful or really sad that he doesn't get that people know he's ADD...)

21. The best thing that ever happened to me was riding a horse.

22. The worst thing that ever happened to me was breaking my wrist the first time.


So, I guess we haven't completely ruined our kid. Except for being outed about the chocolate martini addiction and the small house it's all good.

Did anyone notice what didn't make the list anywhere?????

CANCER.

That's right. No cancer anywhere.

No, "worst thing that ever happened to me was mom getting cancer..."

No, "mom should buy a wig..."

No, "afraid my mom will die..."

Just normal, every day eight-year-old boy stuff: science, surfing, cell phones and Pokemon cards. Thank you, Lord!

Cross posted to Mothers with Cancer

Imaginary friends, clinical trials and the joys of poop

I've had a bunch of things to share with you, none of which seemed worthy of a whole post in and of themselves. So today will be a Tapas Topic day, in that the subjects will be small and plentiful yet not enough to make a post.


Tapa numero uno
First there is this new site called BreastCancerTrials.Org that lets you enter your health history, then matches you up with any clinical trials you might qualify for. All for free. How cool is that? Well, not cooler than not actually having cancer... but still pretty nifty.

I entered my information. Since I am currently cancer-free, am not undergoing any treatments and do not take Herceptin or any other receptor-positive treatments (praise God for all that), I only qualify for two trials, neither of which I am interested in at the moment. The first, categorized as Supportive, was on treating vaginal dryness for women with breast cancer. Um, yeah. No thanks. The second is Preventative in nature and one I would be interested in if it were closer to me. It is on diet and exercise to prevent breast cancer or a recurrence. So interested in that. Unfortunately, the nearest research site is Houston, TX. But that doesn't mean YOU won't have better luck so go fill out your own health history and see what pops up.

Tapa numero dos
And did I tell you that Danny has an imaginary friend. Yep. It's official. Absolutely no one knows who Brenden is - ergo, he must only exist in D's imagination - unless he suddenly grew a social life I don't know about. (And how unfair would that be since I don't have one?) I guess Brenden has been hanging around in conversation for about 5 or 6 weeks now. I actually thought he was a real kid. Danny talks about him the same way he talks about everyone else, in the third person, in question format, as if he interacts with them on a daily basis. (i.e. "Does Alayna clap at the soccer game?") I just assumed Brenden was one of the boys in his new preschool class. When I finally got around to asking, turns out he's not.

I've never known anyone that actually had an imaginary friend. Intellectually I know there is nothing wrong with it but I guess I've still always thought there was just a little something off about those kids. And that's not to say there isn't something a just a little off about Danny either... However, this article I found from the Seattle Post - Intelligencer Reporter was comforting nonetheless.

Tapa numero tres
For those of you sick to death of politics, please skip this tapa. Actually, this might fall more under the confession category than anything else. I voted "yes" on Proposition 8 - the ban on gay marriage. Weeks ago, actually. And now I wish I could take back my vote. I have never had an issue with civil unions or any of the other rights or privileges that come along with such a legal status. My single objection has always been with calling a same-sex partnership a marriage. How hypocritical of me. Who am I to deny equality to any segment of society? The worst of it is that I knew it was hypocritical and discriminatory when I cast the vote. And still I did it! I voted with my emotions and not my intellect. Gah! I hope it is overturned - again.


Tapa numero quatro
I promise this one is lighter by far. We've been seeing an ADD specialist for Ben, Dr. Flaton. I really, really like working with her. She's already given me great insight into what it must be like to be ADHD... helped me see things from Ben's viewpoint. At any rate, she gave Ben a bunch of questions to answer before our next appointment. They are haaard questions. At least I thought so. I guess they could be perfectly simple also. The few that Ben completed I thought were answered very well. (spelling has been corrected because I couldn't stand it.)

1. Tomorrow I will "go to the beach and play."
2. I wish that I "was rich and famous."
3. I worry about "my little brother."
4. I hope "I will never die in a 100 years."
5. My father "is going fishing today."
6. In school I "learn about science."
7. It isn't nice to "be a bully to other kids."
8. My teacher "is nice and kind."

Tapa numero cinco
Yesterday was our last soccer obligation for the season. It was an entire tournament day. We love soccer and have had a wonderful season - even though we haven't won a single game. Well, before yesterday. We actually won the very last game of the season. 4-0. Woohoo! The boys were thrilled! Here is a picture of Ben celebrating with Coach Daddy-O.

Sweet, huh? Oh course, that's not the real story here. Danny and I sat on the sidelines the whole day. We had a great time cheering an clapping for Ben's team.

Unfortunately, Danny had an accident in his pants because the port-a-potties were so far away.

Fortunately, I had thought ahead and put him in a pull-up before we left the house.

Unfortunately, I had already removed all kid stuff from my van in preparation for Daddy-O's fishing trip so I didn't have any wipes or other pull-ups. Yikes! It was only 10 AM.

Fortunately, one of the other mom's had everything I needed. Day saved. After lunch there was another small accident before we made it to the outhouse.

Unfortunately, this time there was diarrhea involved. Ack! Still no supplies and now day-saving mom had taken her diaper bag to lunch.

Fortunately, Danny doesn't mind going commando.

Unfortunately, the diarrhea wasn't an isolated incident.

Fortunately, he was wearing very dark, thick pants and there wasn't very much of it... that second time.

Unfortunately, there was also a third time.

All I can say is that my youngest son is such a trooper. He was swooped up, rushed home, stripped, thrown in a bath, scrubbed within an inch of his life, brusquely dried & redressed then back at the soccer fields within 30 minutes. Surely a record.

Portions cross posted to Mothers With Cancer

Just one last word on Breast Cancer Awareness...

New and Improved! Now even better than before!

That’s me. New and Improved.

The obvious, of course, is that experts have worked hard to remove all cancer from my body. As a result, I am now Cancer Free. And we all know that the less ingredients something contains the more it is worth. Today, however, I received an unexpected upgrade.

This afternoon I had my optometrist appointment. The first one in a little over two years. I hadn’t really remembered much from my last appointment. My main goal is always to get my contact prescription refilled and get on with my life. But that particular year, 2006, I was in the midst of breast cancer treatment. I had just finished 8 rounds of dose dense chemotherapy, had just had my first single mastectomy and was regaining my strength in anticipation of 6 months of oral chemo in concert with 6 weeks of radiation therapy. In short, I had other things on my mind than my eyes. So I was a bit nonplussed when Dr. E asked if my cataract had been bothering me.

I didn’t even remember I had a cataract. Once he said it, though, it all did sound vaguely familiar. Something about a very small developing cataract that we were going to keep an eye on…

At any rate, Dr. E settled in to begin my exam. “Let’s get a look at that fading near vision.” He says as he hands me a card with impossibly small letters on it. As he logged my results in my chart it was his turn to look a bit confused. It seems my near vision is better now than it was two years ago. I reminded him that I had been in the midst of chemo last time and under a significant amount of stress to boot. Perhaps that had effected my eyesight. He was skeptical. “Maybe… but that has never been my experience.”

Whatever, I know what stress can do. A bit of blurred vision is the least of the possibilities.

Then he moved on to “get a look at that cataract”. Only he couldn’t find it. You read it correctly. He looked and he looked. He used about three different lights and all but crawled inside my eyeball his own self. Seems I no longer have a small developing cataract.

Dr. E is such a jovial man. It was wonderful to see him all but scratch his head and smile while he said that it just must have been the chemotherapy because there certainly wasn’t any cataract now. He declared me “Too perfect. More perfect than last time.” and sent me on my way.

A little over two years ago I had Inflammatory Breast Cancer, a small cataract, fading near vision, and cough-variant asthma. Today I am cancer free, cataract free, have perfect near vision and no asthma issues to speak of. I’m a advertiser’s dream!

More importantly, I am blessed beyond measure.

Cross posted to Mothers With Cancer

God's Country

We just came home from Yosemite. It's the first time I've ever been there. Man, did God ever work overtime on that place! He certainly out did himself.

Words really can't express how beautiful the park is so I will just give you a glimpse of my photos from Saturday.

Why I am celebrating this October

Am I celebrating because today is my first boyfriend's birthday? (Happy Birthday, Troy!)

Nope. I got over that looooong ago. Strange though, that I still remember his birthday every single year. It's been 38 years for cripe's sake. (What kind of word is "cripe", anyway? I think I need a better vocabulary.) But, I digress.

Am I celebrating because it's the Federal Government's Fiscal New Year and I hardly have any work to do? You betcha! Yet, still not the reason I'm posting.

Is it because my Candidate O'Choice, Barak Obama, has widened his lead over McCain and his less-than-qualified VP pick to a whopping 14%?

Oh, no. There will be no celebrating yet. I hear there is a little thing called the Bradley Effect (when voters are too ashamed to tell opinion pollsters how they really feel) and I'm not going to tempt the fates. But if it wasn't for that little anomaly possibility... I'd be doing the happy dance all over the place.

No. I am celebrating because I have just received a clean bill of health from my oncologist!

Two Years. No cancer. No Evidence of Disease. Blood work all normal.

Triple Negative Inflammatory Breast Cancer. On Breastcancer.org, Dr. Gabriel Hortobagyi, F.A.C.P says that with current neo-adjuvant treatments for IBC, "about one in three patients with inflammatory breast cancer will survive five years, and the great majority of those who do are probably cured of their inflammatory breast cancer. (here's the good part) Most of the recurrences of inflammatory breast cancer have been very early, within the first couple of years."

Dr. Thomas Buchholz, also on Breastcancer.org, agrees. "It is true that if IBC were to recur, it tends to reoccur earlier compared to non-IBC breast cancer. For example, non-IBC breast cancer can even recur a decade after treatment. This would be very, very unusual for patients with IBC."

What do you think? Is that enough reason to celebrate this October?

October 2006 - Mexico


Today.
Two Years Cancer Free and counting...

Deja vu

Ben re-broke his wrist last night while at a sleepover at his friend's house. For those of you keeping score, he just got to take his splint off from the first broken wrist last Friday.

He and his two buddies were screwing around on the top on a bunk bed. They had been told to get down three times. Ever the good listener, Ben got down quickly... by falling from the top bunk onto one of those rolling drawers that goes under the bed. Both the drawer and his wrist came away slightly worse for wear.

Unfortunately for Ben, it is no mere buckle fracture this time around. He appears to be working his way right up the Broken Bone Scale and is the proud owner of a gen-u-ine Greenstick Fracture. That means that one side of the bone has broken and one side is bent.

This is Ben's actual xray. The yellow arrow points to the break (on the top side of his forearm) and the red arrow shows the bend on the other side of the bone. The milky white line (not pointed out by a convenient arrow) spanning the bone just above the break is the old buckle fracture which has healed.


Perhaps he will learn a lesson from this incident about listening. Yeah, right.

Pretty In Pink

You may have noticed the blog renovation... If you guessed that the new color scheme is all in honor of Breast Cancer Awareness Month then you must spend too much time reading blogs, talking to me or sitting in an oncologist's office. Or maybe all of the above...

You will be bombarded this month by pink ribbons, media stories on breast cancer tragedies and triumphs and products on every aisle in every store asking you to contribute to the cause, finding a cure. That's all wonderful. The publicity is needed - welcomed, in fact.

Just don't let it stop there. Please don't sit on your couch watching a news story about a young mother losing her battle with Breast Cancer and cry into your tissue. Then turn off the TV and think it can never happen to you.

I was 39 when I was diagnosed with Breast Cancer. I had an 8 month old baby. My mother was diagnosed 6 months after I was. My friend, also a young mother, had two different kinds of Breast Cancer at the same time.

If you do nothing else, do your self breast exams. Know your body. If you detect a change at all, go see your doctor. It's so much better to leave the doctor's office feeling foolish for worrying... then to leave in shock with those words ringing in your ears. Breast Cancer.

Countdown

It's that time of year again. The end of fiscal year. The time of year that all Federal Government Contracting employees work until the money is alllllll gone. Day and night. Weekdays. Weekends. Did I mention we don't get overtime? One of the great ironies of Federal employment is that we do not fall under federal labor laws. Instead, we get "comp time", an hour off for an hour worked.

At any rate, In just 8 short days, I will get my life back. Just in time for October, aka National Breast Cancer Awareness Month. Working towards my new focus, bringing Breast Cancer out of the shadows and into the light, I will be hosting a fund raiser for Young Survival Coalition.

I thought about doing a walk, or (gulp) a run... But any one that knows me would recognize that as a pipe dream. So I decided to go with what I know. Beverages. Namely, the adult kind. And it just so happens that YSC is sponsoring a Drink Pink, Think Pink campaign. So, I am going to throw a Pink Cocktail Party!

I'm just so excited. The very thought of a pretty pink Pomegranate Martini just might get me through the next eight days...

Did you hear about this?

Alopecia Universalis (AU) is a genetic disorder that causes an otherwise perfectly healthy person to become completely hairless. Yikes!!! Often these unfortunate individuals are born with some hair but lose it rather quickly, often thier fingernails and toenails as well. They must be careful as they have minimal natural protection from the light, sun and dust.

Dale Platts, 13, from the UK has AU. He's had it since he was 5 months old. You wouldn't think this would be too bad for a boy. At least he's not a girl, right. Except when you remember that he has no eyelashes, eyebrows, or nails. And then you remember how exceedingly cruel junior high kids can be. The very last thing on Earth one wants at thirteen, is to be different in any way, shape or form. Hairless is unthinkable.

Well, Dale makes it through the school day by wearing a ball cap. It keeps the sun out of his lashless eyes and covers his hairless head. It also helps him fit in.

This year, however, the powers that be at the Robert Pattinson School in the UK have called on the dress code to prohibit Dale from wearing his ball cap to school. The penalty for baseball cap wearing will be removal from class to be taught in isolation.

I am proud of Dale for standing up for his rights. The first day of school found his capped head bobbing through the halls. He was sent home.

Now I ask you, what would they have said to this boy if he had been battling childhood leukemia or some other form of cancer? If his hair loss was a temporary symptom of a larger battle for his life? Would it have mattered? Would the temporary nature of his condition have swayed the school to bend the dress code on his behalf?

A disability is a disability. And, yes, a rule is a rule. However, the intent of a dress code is two-fold: to minimize class disruption and to eliminate gang/group affiliations via clothing. Dale Platts is doing neither of these things. In fact, a case could be made that in wearing his ball cap he is, in fact, minimizing class disruptions that occur because of teasing, etc.

Sometimes people really discourage me. They just can't see the forest for the trees.

How to be happy in spite of it all, part 1

Just after I returned to work after breast cancer treatment, a co-worker paid me an incredible compliment. She told me that I had handled my diagnosis and treatment with (I am paraphrasing here with all the accuracy Chemo-Brain permits) incredible grace and, well, I can't remember what else, but it was good. The general idea was that I had a wonderfully positive attitude that continued to astound those around me.

I pshawed her, of course. Because, there was nothing graceful about my actions nor reactions. Nothing heroic. Nothing brave. At least I didn't think so. I was just doing what I had always done during trying times. What I had watched my mother do before me. And my grandmother before her. I put on a happy face.

Sounds simple doesn't it? Or maybe you're thinking simplistic is more like it. Well, you're probably right. When others began asking me exactly how I stayed so positive in the face of a daunting cancer diagnosis and 90% recurrence risk, right on the heals of my finding out my infant was born blind, well, I couldn't explain it. At least not in terms of usable information. It's just something I'd been raised doing. I didn't know quite how to explain the process.

Then I found The Bounce Back Book, by Karen Salmansohn a few weeks ago. It's a short little self-help book, more along the lines of a pocket manual than a book, but it certainly clarified things for me. Salmansohn has a knack for doing exactly what I could not; break down the process of having and maintaining a positive attitude.

In her book, Salmansohn offers 75 tips for "thriving in the face of adversity, setbacks, and losses." Many of these tips are a bit redundant, merely rewording the same advice to fit a slightly different situation. Sometimes that's what it takes, however, for understanding to register. Hearing something many, many different ways. I don't mean for this to be a book review, yet if I had a friend going through a rough patch and looking for a way to fight negativity, I'd consider sending The Bounce Back Book. We could all learn a bit from it's pages.

For my purposes here, I will tell you what I took away from this book. That is, I will share with you those behaviors (as identified by Salmansohn) that I have practiced over the years and feel contributed to my success in overcoming the more negative crap life has thrown my way.

The Formula
Each of us has a genetic tendency toward optimism or pessimism, according to The Happiness Project in the U.K. This, however, only accounts for about 50% of our personal happiness equation. The rest is all about what you do and the choices you make. Dr. Jonathan Haidt even came up with a fancy, schmancy formula to become happier. And he's a Positive Psychologist, or a positive psychologist (I'm not sure which-but I think it might make a difference) so he ought to know.

H = S + C + V

H = happiness level C = current conditions

S = set point for happiness V = voluntary activities

I happen to think Dr. Haidt is on to something.

Family
About that genetic predisposition towards happiness, or not. I guess I must have it. We're real Nietzsche people in my family, "What does not kill us, makes us stronger." And boy, oh, boy, have we been getting stronger in my lifetime. I've always remembered my Mom laughing off the bad times. She always found the humor in life when I was growing up and still does to this day.

Humor saved the day when I was fourteen years old, sitting in the front row in front of my Father's casket with the rest of my family at his funeral. As you can imagine, it had been a stressful few days after he'd died, no matter how expected his death was. We, as a family, have always turned to humor in times of stress. True to form, when we noticed that the florist's shop had placed an arrangement directly in front of my Mom's chair that was completely bug-eaten, we just couldn't stop the giggles. I'm sure the entire congregation behind us thought we were sobbing uncontrollably, in reality, we were shaking from trying not to laugh out loud.

We're sort of wacked, I know. But that outlook has served us well, over the years. In general, we try to always see the humor in a situation. One of my very first comments after my cancer diagnosis, which came close to Christmas 2005, was that I wouldn't have to worry about what I ate over the holidays because I was starting the Chemo Diet come January!! Woohoo! Holidays, here I come!

My family could have focused on the loss of my dad, instead we chose to break an overwhelming situation down into more manageable pieces. We focused on the insect-riddled flowers to get through the funeral.

Similarly, I chose to see the diet-free holiday season as a silver lining instead of the dark cloud that was a cancer diagnosis. The cloud hadn't blown away and my dad was still gone but my outlook on the world was much more positive for my efforts.

Cross posted at Mothers with Cancer

Breast Cancer and the Stressed-out Dodo

Remember the Dodo birds from the Disney movie Ice Age? There's a part where they all walk around chanting, "Doomed. Doomed. DOOMED. DOOOOOMED!" Just before they all accidentally walk, jump, fall or roll off the cliff one by one.

Well, that's about how I feel every time I read a new article about breast cancer research. This morning's article on Yahoo Health informed me that I was doomed from childhood.
According to the latest research by Dr. Ronit Peled of Ben-Gurion University of the Negev in Beer Sheva, experiencing severe life events at a young age (before 20) can increase your risk of developing breast cancer by as much as 62%. Well, shit.

Doomed.

Peled studied 622 women between 25 and 45 years old. 41% of them had been diagnosed with breast cancer, the other 59% had not. Their "Severe Life Events", such as loss of a spouse or close relative were tallied as well as mild/moderately stressful events like bad illness, tragedy or job loss and they were given a questionnaire to determine their anxiety, depression, happiness and optimism levels.

Guess what? The women who had two or more severe or mild/moderate life events were 62% more likely to have beast cancer. Plus, those mild/moderate life events seem to build on each other for a cumulative effect. Oh, goody!

The good news? Women with a "general feeling of happiness and optimism" had a lower risk of being diagnosed. About 25% lower.

His conclusion: Women suffering severe losses at a young age should be considered at high risk for breast cancer and treated accordingly. Do you hear that AMA???

Also of note, Isreal has the highest incidence of breast cancer in the world. But it's not like there's any stress about living there or anything.

As I read the article I did a quick mental calculation of my pre-20 Severe Life Events.

• Age 11 - Dad clinically died for 5 1/2 minutes.
• Age 14 - Dad died.
• Age 15 - House burned down
• Age 15 - Close schoolmate committed suicide
• Age 17 - Schoolmate killed in freak car accident

Doomed.

Looking back, I had many risk factors for breast cancer that I was unaware were even risk factors. Of course, there is the ever-popular BRCA2 genetic mutation. But, hey, it's not like I knew about that before hand. I had read, however, about the increased risk for women who had their first child after the age of 30. I was 33. What was I supposed to do about that, though? Go pop out a pup just to avoid the Big C? Hardly.

And this article brought to my attention the role early stress may have played in my disease. Also, the Mayor of Lemonland at World Wide Breast Cancer informed me that a history of benign breast biopsies is also a high risk indicator for breast cancer.

Huh. See what I mean? Me and the Dodos had a lot in common.

Cross posted at Mothers with Cancer.

If I could save time in a bottle...

One of my new co-blogger friends has been victimized. She was given hope for a cure for her cancer. A radical new surgery, Pelvic Exenteration, was set before her like a glass of cool, sweet water to one dying of thirst. A cure. Hope against hope. Life with her 6 year old son. A future.

But like water in the desert it proved to be a mirage. Her cancer has already spread beyond her pelvic cavity, up towards her liver. This radical surgery in which she will lose so much of herself, cannot cure her any longer. It is too late for that. And it cannot give her greater longevity. Time, is the most precious of commodities.

What it can give her is quality of life in the time she has left.

A consolation prize at best.

Jen is feeling understandably down this week. Stop by and read her powerful words upon receiving this disappointing news and offer her support and encouragement.

Ask me no questions, I'll tell you no lies

Today was my seventh 3-month follow-up oncology appointment. For those of you who don't feel like doing the math this late in the day, that's 21 months post-treatment. 21 months No Evidence of Disease (NED). 21 months of living life. Of course, there is always bad with the good. It was also 21 months of waiting for that other shoe to drop. 21 months of worry. 21 months of mental Do Before I Die lists and At My Funeral Memorial Service lists.

I did get a clean bill of health today. My blood work was all normal. My lymph nodes were all fine. I have no bone pain, pulmonary issues nor headaches beyond the norm. In short, I rock Survivorship! Knock wood.

This 3-month appointment was different than the others, however. This time, I asked questions. This time I wanted more than a checkup. I wanted information too.

I've already shared that I purposely avoided IBC information while I was undergoing treatment and why (read all about it in my memoirs, Why bad Focal Points Happen To Good People) also that I don't have a great track record with asking my doctor cancer questions. The last time I worked up the gumption to ask a scary question I DID NOT like the answer. Can you say 90% recurrence risk?

So I started small, with the nurse who took my blood pressure when I asked her to make copies of my pathology reports. I've somehow lost them over the last 2 years. (Besides, amazingly enough, the details were fading and I was no longer sure I had my facts straight.) Wow. She came right back with them. She didn't even tell me I would need to pay a small fee for copies like the old office. So far so good.

When Dr. Villa came in we hugged and I showed her the new pictures of the boys. Then I told her all about this site and how excited I am about it. She asked for flyers or cards - which I have not made yet. My bad. Then we got down to business. Thanks to posting here I've developed the courage to ask the questions I've been wanting to ask for a long time.

I asked her about the original statistics she had given me about recurrence. She had told me most recurrence occurs at 2 and 5 years. And I'm coming up on the 2 year mark. She said that she had forgotten that I was triple negative when she had given me those numbers. The figures for triple negative breast cancer are more like 12 to 18 months. But I am beyond that. And that is very, very good. Perhaps, she says, you've fallen into that niche of ones who sneak through.

More good news. This was working out better than I'd hoped. So I asked about the infamous Cancer 5 Year Mark. "Does that hold true for Inflammatory Breast Cancer also?"

"I'm going to say 'yes'," she said. Yes? Yes! Yowza! Something to work towards!

And I asked about preventive clinical trials that I may qualify for. There are none at the moment. It's nice to know she's keeping her eyes open for me. I've wondered about that for a while now. She did mention two new bits of research that she wants to keep in mind for me.

We will check my Vitamin D level with my next blood work. Studies have shown that breast cancer patients who are deficient in Vitamin D have almost double the chance of a recurrence or spread over 10 years time and are 73% (!) more likely to die. Holy cow!!! It's not about drinking milk. It's about getting 15 minutes in the sunshine without sunscreen daily. Do it! 73% is too huge a risk not to.

She's also closely watching Avastin for it's benefits in preventing recurrence.

I had read about both when they came out so it's nice to know I'm keeping up well enough on my own.

I want to send a big Thank You to every one of the women at Mothers With Cancer. The sisterhood that is forming before my eyes is already having its effects. Empowerment. Strength. And this is only the beginning.