The truth will set you free....it will piss you off first

We all make mistakes, everybody does. How we learn from them is our own choice, so choose wisely!



I started writing this when I found out it was a really a fake. I want to preface this by saying I know that help is needed. I get that, and I really hope she gets help, fast before more people are hurt. There is actually a condition for this. I have given her lots of chances to come clean but she seems to not want to face the real facts. There are people that need to stop praying for your cancer and I feel they need to know the truth.  I want this said by me before the ones that are set out to hurt her take over. I do not want pain, just for this to end! Let me start at the beginning for those you do not know what cancer is like....

You get the word, the call the diagnosis "You have cancer". SHIT, are you kidding me?, am I going to die?, how did this happen?, what am I going to do? Among others, these things go through your head. Your friends and family members want so much to tell you it will be ok and they find ways to help, but if they never had cancer then they just do not really get it. So, it is 2012 and social media is at your fingertips (get it? cause you type, LOL). You search Google, you look at FB, hit Twitter then stop at Instagram. WOW, you find so many cyber friends all feeling those intense feelings. All going through the war against this disease that is taking rank on your body without your permission. You become friends with so many, now I do not mean "friends", I mean you cry with them, laugh and want them to be well. When a blogger friend died this year I sobbed, like a painful sob that I just lost a friend. The connection is real and strong, we call it "CANCER CONNECTION". The fact is we all need this so bad, not just for the advice and words of encouragement but to see we are not alone. I want to meet all these fighters, in Sweden, Netherlands, Canada, Italy, South Carolina, Florida, all over I want to meet, hug and cry with everyone! When I sent them their stupid dumb breast cancer shirt it made me so proud that they would honor me that way.

So do you get how important these friends are, so important. We post pictures to let each other know who we are doing, when the next surgery or treatment are, to make us laugh and sometimes to cry. Enter Katie, so sick with bone cancer. Telling us how she needs this next surgery to survive but the surgery is so scary. Showing us ALL her meds she takes. Pictures go up because she is back in the ER and is scared as hell. Telling us that she cannot go on she accepts death. Pray for her please. We did we pray, sent her so much encouraging words she must have been so happy. We told her we were here for her, told her our own personal struggles. Opened up so she knew she could trust us. Sent her a stupid dumb breast cancer shirt just because I care so much and wanted to lift her spirits, no charge Katie I know how poor you are. I cried cause she was so ill and I wanted to help her. Our heart was heavy for our friend battling and needing support. UNTIL.....

She was a cancer fake and so were her pictures. Her head was shaved for St. Baldrick's then to make it look like you lost it. These are the facts, we do not need to give it more than that.

I reached out to her before I did anything else. I gave her the chance to come to me for help. All she had to do was admit her lies to me. I hope everyone just stops and leaves her alone. She is getting help. Yes it was a lie that got out of control. But I am done trying and I really believe she needs to be exposed. Not to hurt her, because I believe she needs some major help, but to let those who she is seeking attention from know that she does not have CANCER. I am not trying to hurt her, but I am looking out for my friends who she is hurting with her lies, real friends who do not lie to each other! I also feel like this will help her. It will release her from the lie and I hope that she stops. I want her to move past this and get on with life. Those of us fighting right now will never understand why she did this, but I am done trying to figure it out. Katie says she has health issues, I just want her to get better. I want her to have peace.

 I am asking everyone to not be mean or nasty, just delete her from your Instgram, FB, twitter and anywhere else. Stop the negativity and just move past this. Say your peace with her but do not add to this horrible lie. Katie needs her family to help her, she needs support that we can not give her unless she chooses to stop running and lying. For now we need to let her run away and let us not look back. Nobody needs hate mail, emails, texts or such. She was so wrong, but during the holidays, shouldn't we have a little compassion? So get pissed, but be the bigger person and let it go, let her go. Does being mean ever make you feel better? Say something nice or nothing at all. But karma has away to taking care of it all.

The making of a hypochondriac

Before I was diagnosed with Stupid Dumb Breast cancer I was NEVER sick. Even if I had a little something it didn’t bother me enough to go the doctor. Sure I did my yearly crap but nothing beyond that. Then the effin lump came into play. Now I feel like I am uber (I love that word) sensitive to any little thing. A couple of weeks after the mastectomy I was getting this pressure above my eye. Not a headache per say but constant pressure. It was affecting my balance and caused me to get floaters. Must be a tumor right? No just nerve damage from the anesthesia, it gets better over time but worse with each surgery. Guess I am screwed there.

A couple of weeks before the lump I had an ablation, hystercopy and a D/C, nothing like cleaning out the parts. I have had bad periods, cysts blah blah blah so we cleaned house. The ablation should help with all that, nope. This past couple of months my friggin period has been early, came in like a monster and gave me cramps and lower back pain similar to labor. Really I do not need this shit, no one does! So a sono revealed some follicles (another great word, seems all happy and gay!). Gotta love an internal sono, “Do you want to insert it or shall I?” After the sono I went to the OB/GYN, my FAVORITE office, warped I know but the staff and doctor make me feel like family not a patient! My sweet OB decided to do an in house biopsy, OUCH!!!! I love when a male OB says “It is a small probe, I will be quick and you will do great”, excuse me but do you have a vagina??? I held my awesome nurse Gia’s hand and it was over fast but shit balls that hurt. Biopsy came back …what was that word “unremarkable”, really that is good no cancer there but what a dumb friggin word! I am still having back pain that is shooting down my leg and cramps with pelvic pressure so just to be safe I had a CT with contrast of my pelvic and abdomen.

So I drank my white chalky crap at 11:20 and went to be scanned away. It was gross, cold or warm all GROSS! You know how I roll, with a posse in toe. MC and Genevieve came along for pictures (cause ya never know what they will find) and moral support (cause ya know I have no patience right now). I do not think the nice lady working the big machine was amused by my estrogen, but she ended up being a good sport. I think it is funny that spell check changed entourage to estrogen so I left it, BLAHAHAH! ANYWAY, they scanned my lower parts in no time and I was off and running, to the bathroom cause dude I had to pee! Then home to wait……

I know I am so lucky that I have friends that will read my results ASAP. My good friend called me to tell me I have ANOTHER fucking cyst, he did not say it this way he is too sweet. Basically, I am a breeding ground and need to have it all out! The thing that sucks is you have to do all this when you have been bitch slapped by cancer, you just never know. The correlation between breast/ovarian/uterine cancer is crazy! There is no cancer right now YAHOOOOOOOOOOO but honestly I feel like these cysts are just waiting for some action. I do not plan on giving it any! Anyone that thinks that cancer no matter the stage, ends with a mastectomy or the last round of chemo or the last radiation is a fool. The doctors all take all "issues" differently and with a closer eye. The oncologist will review all this when I visit him in January before the oopherectomy/hysterectomy (more funnier words). At this point January 24th can not come soon enough. So out with the uterus, the ovaries, the tubes and cervix who needs you anyway, not me.

I never used to worry about health issues, I do not have Munchhausen, I never liked being sick. This is all new ground for me and I do not like it. I used to be so active now I can’t focus. I keep waiting for the other shoe to drop. My journey has been hard for me, yes there are other people dealing with much more, but for my family this sucks! Every time I go to the doctor a new “thing” arises. Makes me not want to go. As time goes by I know this gets less and less the worry at least but right now until my MRI in May I worry. Cancer is a sneaky bastard that loves to pop out and give you hell. I plan on being just the bitch to give it back!

somehow, i thought

I thought it would all happen more quickly than this. I thought if I had no complications, then I would just heal.

I thought that "three days in the hospital and two weeks puttering at home" meant that by the start of the third week I would be running errands, writing, going for walks and yoga and that I would be putting this behind me.

It's not happening that way.

I am healing.

I'm just not very patient.

My head still hurts. Sometimes a lot.

I am more tired than I could have imagined.

I still feel stoned, even when I have taken nothing for the pain. My brain is just not working properly.

And my fingers don't seem to want to type what my brain tells them.

It has been three weeks since my surgery and it really doesn't feel like it was very long ago at all.

Except that I'm less patient now.

Which is probably a sign that I'm healing.

I'll get there. Of course I will.

Today, I just wish it were easier.

beginning to feel a glimmer...

Human patch work quilt, kind of gross yet amazing at the same time

I have been playing with this blog post in my head, which if you have ever been on 3 different types of pain killers can be a crazy place.  DIEP is no friggin joke people no joke. I have two large incisions on my breasts that are healing nice, 6 new drain hole marks (I hate those god damn mother fucking drains), a new and improved belly button, and a big ass cut from side to side in my pelvic area. Let's break it all down shall we?!

 

The toobs (if you are new here I'm calling them toobs because they are tissue made boobs) are soft, real looking and WARM! No more cold foobs, no more. We will watch the scars for keloids, but we are on top of it now. This is just what I wanted these toobs oh glorious toobs.  I know that this seems so cray cray (as the kids say) to some but to me I just took two parts of me back from cancer! Take that you stupid dumb breast cancer beast.

 

Drains! Why do we hate you so?? Well you are gross tubes coming out of the side of us. When they tug on things we think they will be ripped outta our bodies. They have to be dumped 4 times today, grossssssss! They itch like crazy and by crazy I mean like I am going to go nuts and I can't scratch them. Oh and did I tell you that you have to hang them around your next when you shower?? Again gross. The only thing they are worth is when your kids are screwing up threaten to make them dump those JP Morgan grenades.  Totally works. I won't even go into when they pull them out, the feeling you have oy vey.

 

Someone told me that the DIEP/TRAM is similar to a c-section. Really?? My incision  without exaggerating goes from my butt check bone on the left to the butt check bone on the right. Please tell me how many babies came out that big, you can't cause there are none!!  The other point here is that when giving birth which is amazing does not involve the removing of tissue and muscle to make breasts in a 10 hour surgery, 2 day stay in ICU, 3 more in hospital.   Keep these things in mind when you try you comparisons out on people.

 

The following pictures are very graphic, very. Quote from my husband "Are you going to post those?" I debated but I really feel like they need to be seen. This was 2 days after surgery. I am very very swollen and have gone down a lot since and I mean a lot. And am starting to take shape nicely, I'm looking forward to watching my body heal. It's been through a lot and I'm so happy with this chapter. FYI I am in a lot of pain physically but mentally I feel the healing beginning.

 

 

I will leave you with this story....

I get an email from a sweet chick who my cousin gave my contact to. We chatted back and forth via email. We talked doctors a few times about recon and our upcoming surgery. Wait when is your surgery? Just so happens that my DIEP is Wednesday and Michelle is getting her mastectomy on Friday, on the floor that I will be moved to. Wouldn't it be funny if we met?? At 3ish on Friday I just got out of ICU they said ok let's get you up to me. So I put my wedges on, no just kidding that wasn't happening this time, so I get my sandals on and start walking. I was dizzy, light headed, nausea but I was up and walking. And I was heading to room 5037 the exact room that I had my mastectomy in. MC and my nurse were with me and we saw some people milling around, it was Michelle's family and she was back in her room. Her husband waved me,  I cannot express how happy I was. There is nothing like a breastie hug nothing. We meet in the halls again for another walk but the texting was already outta control by then, I hope she has unlimited!

 

I can never ever explain the feeling of meeting someone with cancer, someone who gets your crazy thoughts, your happy ones, your guilt and your pain. They understand when to give advice, listen or cry. They just get it. The bonds I have made through this are insane. I met Jaime another badass cancer ass kicker, a few weeks ago and if a few days go by without a text I worry. Just today in a simple chat with a breastie left me feeling relieved that someone gets me and what cancer warriors need, she has a great name too (hint it's Anne Marie).  Next week I will be meeting someone that I have been talking to for almost a year. We have shared some private info and some good girl friend chat but most of all we lean on each other. I'm so excited so excited!

 

I'm not ready to rock my tiara but the pink boa is near by.  I am looking forward to getting physically better each day, having my mind heal a little each day and starting 2014 new and improved!

DISCLAIMER this took way longer than I ever thought and trust when I say I didn't write enough, maybe I should try youtube videos were I talk!!!!

 

 

better than yoga

Lucy could give lessons in how to relax.

The $15,000 Faint

A good ride spoiled -- November 25, 2010

Some of you already know that I spent Thanksgiving in the hospital.

       It was a fluke, a frightening moment that turned into a 24-hour - oops - make that a 23-hour stay.  It was the first (and last) time I've ever been wheeled into an emergency room feet up, head down.

       This was also the first time I've been an empowered patient in the age of social media.

       What a difference technology makes. Instant access to my Twitter feed, #HCSM and #Livestrong friends added an entirely new spin to the displacement of being well one minute and riding in an ambulance in the next. Within moments of tweeting that "something weird happened," my inbox filled with virtual hugs and messages of concern from. People truly do care.

        Here's what happened.

        As it was getting light that morning I cycled to town for the annual "Run Through the Woods" event. For years we've volunteered with the Woodlands Cycling Club to escort the  runners, from pro-ams to families out on a healthy-holiday jog. We have a great time supporting them, then cycle another 20 - 30 miles so we can enjoy our Thanksgiving with (some) caloric impunity. On our way over to the starting point my tire slipped into an expansion joint and I toppled straight over and landed right on my knee cap.

        In typical fashion I hopped back on my bike and started pedaling. This is what you do when you fall down in front of a crowd of people who are now staring at you as though you've sprouted another arm. You pop up like a jack-in the-box.  And smile.  Your biggest, most charming, No, I’m not really the idiot I appear to be smile.       

         But by the time I reached our group and stopped I went from feeling stupid, to feeling unwell, to feeling lousy, to losing it, all in less than five seconds. It was like an underground sprinkler system broke. Water started dripping from me. Nausea came on like a freight train. The next thing I knew I was sitting on the curb near the stoplight, a medic on each side. They seem to have beamed down for the occasion. One was taking my blood pressure and watching me with the intense, odd concentration of someone who can’t hear anything going on in your veins.

        What trilled across my mind was an appointment two days earlier with my internist.  Right before I was left she came back with my EKG reading.  She said something about a "poor r-wave progression" and ordered a nuclear stress test. That was a “what?” moment.  While I know now this phrase doesn't mean much if you're heart is healthy, I did not know this Thanksgiving day.  So when the medics were adamant about doing an EKG I agreed. It wasn't long before I was on my way to the hospital.  Until the ambulance left I didn’t even know that the competitive run had been delayed until we cleared the intersection.

       You see how all the pieces came together now, don't you?  What an awful day.

Having my Blackberry was almost as good as having my own pillow.  I became my own paparazzi. Taking horrible photos from my phone somehow helped the worry.  Click.  Look, there’s a photo of my helmet!  Wow! Click.  Look, there’s a great picture of Steve’s bike!  Click. Click. Click.  My Blackberry became another way of telling the story.  Still, as cool as smart phones, social media and online communites are there are some things about being in a hospital that haven’t changed:

1)  Any pain you're experiencing will inevitably be worse lying in a hospital bed;

2)  Not knowing a test result or the cause of symptoms you’re experiencing will bring into play up all the bad things that COULD be wrong despite the fact you were healthy until this happened;

3) Social media and chatting with Twitter pals does not change the fact that the longer you stare at the IV needle in the crook of your arm the more that sucker is bound to hurt;

4) Experienced nurses are much more forthcoming and fun to be around than a freshly minted one who may view you as a potential rehabilitation project.  The older nurse brought in a portable computer, had a super laugh, and read all the test results to us as they arrived. We talked about her ex-husband (who we agreed, did not deserve this awesome woman), cancer, stress, sudden death and holidays. The new graduate, on the other hand, started citing studies on red yeast rice instead of telling me my cholesterol readings.  Party pooper.

5) Survivors missing lymph nodes are given bright pink bracelets lovingly titled "AFFECTED LIMB. NO PUNCTURES." You can still expect at least one tech to start to take blood pressure from the arm regardless. Slap them. They won’t know the difference.

6) Meals will still provide you and your loving family member (LFM) with a five-minute laugh break.  Start a 'name the entree'' contest.  The one who dares to take the first bite gets dibs on #7.

Fried foot? Oh, it's fish. Who knew?

7)  As a seasoned survivor you already know how to take care of yourself. The good food is always in a small room off the nurses’ station. That’s where they hide the  Diet Dr. Pepper and Blue Bell ice cream.  Send your LFM on a raid.

8) If you are admitted through the emergency room for 23-hour observation, an on-site physician called a "hospitalist" will be your new best friend.  This is probably outstanding if you can understand them. Two different physicians visited.  I tried dear readers, yes I did.  Go back to awesome #4 nurse.  She will explain what’s going on, and why.  Besides, you already know what’s going on, don’t you?  I did.

9)  There’s still no easy way to manage IV’s, wounds and a bath from the sink.  Still, after all these years.

10) Something surprising will happen.  After talking through everything with me the next morning the consulting cardiologist says suddenly, “oh, you had a vasovagal response to falling.”

          “A what?”

          “You fainted.” 

           Cool. Leave it to me.

Even though I scrubbed our Thanksgiving this year, the next time I fall?  I’m grabbing the smelling salts on the way down.

Happy holidays!

Note:  I actually did learn a lot from this experience.  Surviving cancer doesn’t leave us immune to other problems associated with the A-word (aging).  Heart disease is still the number one killer of women in the United States.  My thanks to journalist Mary Knudson, author of Living Well with Heart Failure, for her friendship, input, and advocacy on behalf of women with coronary illnesses.  Mary blogs at http://heartsenseblog.com/

time passes

Much Needed Cancer Dialog Launched from Voices of Survivors Foundation

Talking about cancer can be difficult in the best of circumstances. Try living with extensive metastatic disease.

If that sentence alone conjures up images of hospitals and IV's think again. Today the Voices of Survivors Foundation launched a new initiative -- called "Conversations" -- that explores ALL aspects of cancer survivorship, including dying.

In the first segment, VOS executive director Lynn Lane talks with 37-year old Alli Ward, who has metastatic ovarian cancer that has spread throughout her body, including the brain. The interview will knock your socks off. Ward is authentic, funny and genuine as she talks about having to move back home, the loss of independence and having to ask her parents for rides since she can no longer drive. You'll feel that this incredible woman is a long-time friend. She teaches us all to look at the person, not the disease.

If you're not familiar with The Voices of Survivors Foundation, go to http://www.voicesofsurvivors.com. The nonprofit organization is the brainchild of Lynn Lane, a native Texas who was living in New York when he was diagnosed with prostate cancer at 41. After his treatment the former documentary film maker started filming survivors he'd met online when he was researching his own illness. Once the resulting clips were posted the incredible responses led him to devote his efforts to documenting survivorship -- in all forms -- on a full-time basis.

He is well known and widely respected in cancer circles and his work brings a fresh and much needed dimension to cancer survivorship.

Watch the video at: http://bit.ly/uPBsw and send a beautiful thought to Alli Ward.

Blessings,

Jody

oh oh...

"CT scan radiation may cause cancers"

but on the other hand

"Study: Coffee and tea may lower diabetes risk"

in other news

My children are still very beautiful.

(photos: Mary Anne Folckomer Register)

melancholy meme

These are questions from the Proust quiz in a recent issue of Vanity Fair magazine. I stole the idea from a friend (she did it on Facebook, so I won't identify her here) and I've been thinking of it ever since.

It was interesting to do. My answers reflect the fact that I have been in a somewhat melancholy mood of late. I tried to answer without censoring myself.

Feel free to answer the questions in the comments or to link to your on blog if you do it there.

What is your idea of perfect happiness?
Being somewhere beautiful, being with someone I love. Happiness can come out of nowhere. I am better trained to notice it now.

What is your greatest fear?
That I will die and my kids will forget me.

What is the trait you most deplore in yourself?
Lack of discipline and the fear that causes it.

What is the trait you most deplore in others?
Intolerance of difference.

On what occasion do you lie?
Sometimes to protect others' feelings. Occasionally to protect myself.

What is your greatest extravagance?
It used to be shoes. I do like nice glasses but that's only every couple of years. I'd have to say that now, it's eating out and yarn.

What is your current state of mind?
A little fragile, anxious and blue. Figuring out how to get past it.

What is the quality you most like in a man?
Intelligence. The ability to laugh at himself. And if he's in love with me, that's pretty attractive, too. OK, so that's three. I did say that I lack discipline.

What is the quality you most like in a woman?
Intelligence, strength and a sense of humour.

Which words or phrases do you most overuse?
Lately, it's "Oh, for pity's sake!" Trying to excise the potty mouth.

When and where were you happiest?
No particular moment in time. In PEI with T., in London with S., at the family cottage, in the arboretum with the dogs...

Who are your favorite writers?
Depends on my mood. John Steinbeck, Jane Austen, Joseph Boyden, Sarah Waters...and lots of mystery novelists too.

Which talent would you most like to have?
I wish I could sing.

If you could change one thing about your family, what would it be?
I'd make us all appreciate what we have.

If you died and came back as a person or thing, what do you think it would be?
A well-loved dog with a stay at home alpha human and a family that loves me, walks me and feeds me well. In other words, I would come back as one of my dogs.

What do you dislike most about your appearance?
Where to begin? Trying to be healthier in my attitude about this. But my weight (exacerbated by lymphedema) is getting me down lately. And it would be nice to have my breast back.

Where would you like to live?
Somewhere where there is no winter.

What is your most treasured possession?
If you agree with me that the dogs are family members and not possessions, then I guess that would be my raven ring.

What do you regard as the lowest depth of misery?
Being 38 years old and learning that your liver is riddled with tumours and you don't have long to live. Needing morphine to control the pain for months. Having your heart ache on behalf of those who love you, especially your kids.
And life really is pretty good when you climb out of those depths.

What do you most value in your friends?
Loyalty, love and and humour.

What are your favorite names?
Sacha
Daniel
Katya

What is it that you most dislike?
People who think they have already learned all there is to know. And cancer. I don't like cancer either.

What is your greatest regret?
Not maintaining friendships with some people who were very important to me.

How would you like to die?
Painlessly and after having lived a long life.

What is your motto?
Be good.

not imaginary

It's a running joke in my house, "Mama's talking to her imaginary friends." They're the people I've met online over the last few years, through blogging and various social networks. Of course they are very real people and when bad things happen to them, I do feel it keenly.


S., though, was someone I met in person - at the Conference for Younger Women Affected by Breast Cancer in early 2009 - and with whom I continued to connect online. We first connected because we both had metastatic breast cancer but soon realized that we had much more than the cancer in common - a progressive outlook, quirky gifted children and we both chose to expressive ourselves in creative ways. Unlike me, though, S. was a bona fide artist who used fabric as her medium.


S. was about my age. She had been diagnosed at Stage 0 but the cancer seemed to have quickly metastasized (was it just very aggressive or had something been missed? This was one of the things we discussed over dinner on the evening we met). We ended up spending all of our free time together, during that long week end in Atlanta - every coffee break, meal and evening. We even grabbed lunch together before grabbing our shuttle to the airport.


We stayed in touch after we got home, exchanging the occasional email and through the Care Pages that S. set up to share news with family and friends. She wrote to me about her latest art project (which integrated images of cancer cells), her daily life and a wonderful trip that her family took to Costa Rica. She also shared her frustration with the fact that no treatments seemed to slow the progression of her cancer.


Last week, I received a notice that S.'s Care Page had been updated. I logged in and found a message from her husband: saying S. had had moved from treatment to hospice care. Yesterday, he contacted us to say that this remarkable woman had passed away in her sleep.


I've run out of words to describe my sadness and the grief I feel on behalf of her family. Another child has lost her mother. It's all so wrong.


Over the week end, Zoom remarked that having cancer brings a lot of people into your life but takes a lot of them out, too. And, the truth is, I would do nothing differently, even knowing I would face loss and be forced to confront the possibility of my own death. The people who have come into my life - online and off- since my cancer diagnosis have improved my life immeasurably. I wouldn't trade that for anything.


But, right now, my heart is aching.

Hahah stupid dumb breast cancer I got two pieces of me back, sucka!

Cookies for the hospital staff and shoes for me!

The surgery was a success! Ohhhhhh yeah. I have soft toobs (tissue boobs), I am so so happy. Drugged and in pain but satisfied. I came into the hospital with some badass wedges with lots of sparkle and try full of Italian cookies for the staff Yes  I used bribery even brought another tray for the ICU staff. OPPS did however forget my posse in the waiting room where they waited for 10 hours. They all know where the cookies are. 

Back to the toobies, I have the bestest plastic surgeon on the planet and his side kick amazaboobs. They did a great job and can't wait to show my breasties when they heal. The doctors took two. Swollen lymph nodes which were benign, bam! The entire staff is wonderful, I Mean really wonderful. They are smart, sarcastic and attending to my every whim which can be a little crazy. 

Thanks so much for all your love, support tweets, FB and Instagram comments. I can very drugged up  and trying to respond when I can. 

I just. Have to say this... Hahahahaahahahahahahaha cancer I for two pieces of me back! Sucker!! My tiara is shined and boa is fluffed but for now it's nap time! 

A library event WOW

I heard through the grapevine that the library had a “surprise" for me. I hate surprises, I am the one planning the surprises, not getting them! I had it under great authority that I would love it. Well, I DID!! The library made me a fabulous Stupid Dumb Breast Cancer tree; it was filled with quotes, shoes and pinkness. It is awesome, just like the staff there. They also had a message board with things people could say to me, which is still there and I cannot wait to read. Surprises were good here! Thank you so much my friends at Fayetteville Free Library, thank you.

The night started with rain, Yuk. I would rather it snow, sorry but I would.  Then my van died in front of the library, needed a new battery. Truly never a dull moment. My minions got to work. My older boys were very good about helping set up and get ready so big thanks to them! Genevieve got to work displaying all the photos which I think looked beautiful in that library room. MC and Kristin set up the shirt table, seriously what would I do without my peeps??? Echo, Riley and Ben stayed to help pass things out and then listen to the talk. Made me so incredibly proud to have them there. My son needed to hear this to really grasp what I went through on this summer. The girls needed to be aware of this for the future. I was so happy that my niece, despite how crappy she felt, as did two other teenagers that I hope get inspired to be active. Well, I know they will and I cannot wait to see what they do! I think I just lite a fire under their asses, I am proud of their passion to fight cancer.

I loved meeting all these survivors that I have grown to be friends with. I mean I LOVED it. I feel like I know them but seeing them made their story come to life. You do not know how much that meant to me. My story in part is some of their story and we share a cancer connection. After the negativity left the building (yes it seems t follows me like the plague) the energy that came through from everyone was pure positivity! And so I began MY journey with everyone listening, laughing and shedding a few tears. I tried to not watch my sister; she is a water works girl! I told my story which to me and my family made for a long, tiring physically draining summer. My son was so proud of me, which made me so happy. I mean shit he is almost 13 and he was inspired by his MOM!

I want to make this BIG; I want this to come to your town. See the reality is that it doesn’t matter if people in Troy, NY know me personally. If they know cancer then they get my story. I am just simply giving cancer a voice and a face. There is so much more behind this pink ribbon that I love to wear. This is the story of a young woman of 4 boys who caught her cancer and took the paths that she saw fit. It may not be the story you relate to but it is showing what happens to a women’s body when she takes this path. I want people to see those drains coming out, the scars, the pain, the SHOES!! Breast cancer has a face and it is young, it is fierce, it wears high heels. Stupid dumb breast cancer is not your grandmother’s disease. It hits woman of any age, race, and ethnicity.

So, I thank the library for their support and the guts to show this at the library. I would love to come to your library, your school, your town. South Carolina isn’t that far right??

Advocacy at #SABCS

Dec 6, 2010 San Antonio: 7:15 am

My mind is stuffed with data - slides, posters and much more after attending the 35th annual San Antonio Breast Cancer Symposium last week, an international gathering covering everthing about the science of breast cancer. 

Conferences like this are a conundrum: there are more sessions to attend and people to see than one person can possibly manage ... yet we know how vitally important the information is for women with triple negative, inflammatory and/or metastatic breast cancer. We all know women whose lives depend on what is happening in the translational research context and Phase III trials. We all want to have the chance to stand up to applaud, cheer and yell. This year there was polite applause. While I keep hearing the phrase - from lab to the clinic - there wasn't a lot for the woman having an appointment tomorrow. That is the truth from what I've studied so far. Knowing what is possible helps us understand how to pinpoint our advocacy.

Here are a few highlights: 

Susan Rafte, Houston

• 34 Years: that's how much time was needed for the first-ever "civilian" moderated session.  Susan Rafte, founder of the Pink Ribbons Project in Houston, moderated a three-part panel on breast cancer survivorship that included presentations on sexuality during and after treatment, the risk of secondary cancers and cognitive dysfunction. Patricia A. Ganz, MD, speaking on the cognitive issue, was a far better bet than the small but attention-grabbing study on chemobrain presented later in the week. Establishing a survivor-led session was a huge advance in advocacy that we want to see continued not just at SABCS, but at ASCO and ASCO Breast. Let patients help, is what @epatientdave in the Society for Participatory Medicine says.  Ditto that!

• Atlas Shrugged: The Adjuvant Tamoxifen: Longer Against Shorter or (ATLAS) study showed that use of tamoxifen for 10 years instead of five provided a 2.8 percent decrease in overall mortality, especially in the second decade following diagnosis. You could hear the collective groans from survivors who have taken the drug. You could hear the collective groans from medical office staff in charge of answering the phones. You could hear the questions about tamoxifen/vs aromatase inhibitors and who to start when and on what from oncologists. In the long run this trial will not change your life; it will add to the wealth of information oncologists have in developing treatment plans for women diagnosed today. With one huge exception: if indeed pre-menopausal women are going to be prescribed 10 years of tamoxifen then an effective survivorship plan that includes side-effect management must come with the prescription. No kidding. What use is the information if adherence in the population under 45 barely approaches 50 percent? This issue itself is bigger than the trial findings. Adherhence is a worrisome trend considering the natural history of ER+ breast cancers and its tendency for "late" recurrence (be sure you know when late recurrence means five or when it means after 10 years - it varies). At some point in THIS life I hope to hear one physican stand up and state the simple truth, "There's no doubt. This is a tough drug to take and we've known this for a long time." 

• Science is Incremental. Breakthroughs are rare. Advances don't arise from a vaccuum. Most  point to the 2005 ASCO presention of Herceptin in HER2+ cancer as the benchmark. "Cancer researchers often toil in a grey mist, a world of indistinct outlines, an oft-depressing, or at least frustrating place," George Sledge, MD, past president of ASCO, wrote in OncologyTimes. Wow. It helps when we understand the researcher's daily challenge; the clinician's hopes.  A basic understanding of how medical progress happens is essential for making sense of SABCS. Without it the symposium would be a very disappointing place. Distinguishing hope and hype, promise or promotion is key.

• Anecdote vs Evidence.  My experience is essential as an advocate and writer. It empowers me as "ears" within the breast cancer community. But my experience is not evidence. It's my story. 

Science in action. Biomarkes w/in HER2+ drawing.

• Moving Forward in HER2+ Cancers.  There was good news here: one year of traztuzumab is still the gold standard. And to see where things are going? Take a peek at my horrible photo above: it gives you some idea of the depth of detail necessary to develop effective treatments. We are talking about layers within an individual cell itself that are at times impossible to fathom. All within one cell.  Plus another discussion on "functional genomics" left me with the impression that it may not be an individual biomarker itself that makes the difference in developing effective treatments but the architecture in which those biomarkers exist, or better yet, the roadmap or pathways the biomarkers populate.

• Avastin:  So long, farewell...or at least, until the drug can be matched with the right biomarker.

• Advocacy: The breaking story as far as I'm concerned?  The photo here, advocates and fellow recipients of scholarships from the Alamo Breast Cancer Foundation.  Betty Summer (L) and Vicky Carr, are part of a group that formed within the conference itself.  This is why advocates attend conferences like SABCS.  These women identified a need in the triple negative breast cancer population and moved forward immediately. Not tomorrow or next week. They went to work that day. They met, planned, thought, and considered the evidence. They found physicians involved in triple negative research and asked tough questions: where is the promise? Where is the hope? Before the weekend was over they were formulating a plan, "drilling deep," as we heard all week, outlining strategic initiatives to address an aggressive and confounding form of breast cancer.  If there's success, and I'd say there was, it will be in watching their story unfold. They are part of the solution. So are you.

There's much more to come.  Thanks for reading,

From Cure Magazine on advocacy:

 http://www.curetoday.com/index.cfm/fuseaction/blog.showIndex/kathylatour/2012/12/3/Breast-cancer-advocates-a-visible-presence-in-San-Antonio

With thanks to the Alamo Breast Cancer Foundation for the scholarship that made it possible for me to attend the 2012 San Antonio Breast Cancer Symposium.

Hey all-
AM went into surgery around 8:30 this morning. Gonna be a long one. She should be out around 5:00 pm. Did she wear crazy heels and make homemade cookies for the hospital staff? Why, yes, she did. Photos coming when I can get to them. My wife kicks ass at surgeries...I'll post again when she is out. Tom. 

healing

Well it's not been linear but I definitely am healing well.

The drugs have made it hard to concentrate and type but things are progressing well. Today is the first day that my fingers and my brain seem to move more in concert.

And now I have treatment tomorrow.

So please don't worry if I don't blog. I'm doing fine - and expect to get back into regular writing next week.

Thanks so much for all the love and support from near and far.

It means more than I can say.

writing your way through breast cancer

It's been two days since chemo, so I feel lousy and have the attention span of a gnat.

It works out well for me, therefore, that I have something I've been meaning to share with you all for a while now.

I really like the Philadelphia based organization Living Beyond Breast Cancer. I've been fortunate enough to attend two of their own conferences (one called "News You Can Use" and one specifically for women living with metastasis) and the Annual Conference For Young Women Affected By Breast Cancer, which they co-sponsor (last year's was in Dallas and I'm applying for a grant, in the hopes of being able to attend in Atlanta this year. It will be the 10 year anniversary of the conference).

A little while ago, LBBC contacted me to see if I would be willing to be interviewed for their Winter 2009/2010 newsletter about "writing your way through breast cancer." I didn't hesitate, as this is a subject about which I am passionate.

You can read the interview on their web site. I am also please to not that they have listed "Not Done Yet" under the heading "Creative Coping: 10 Publications To Motivate You."

Judy

I'm sure she did not "go gently into that good night." 


Judy was a fighter, a woman whose Facebook page stated "I love my life." And that was life centered around her family and friends, especially her 10 year old son and her husband.


I first met Judy (and I do feel like I knew her, even though we never met in person) when 20 or so women were brought together by Susan to form the group blog, Mothers With Cancer. It was clear from the outset that Judy  would become a particular friend.


She had a passionate sense of social justice, a dark sense of humour and a straightforward manner that endeared her to me immediately. Like me, she loathed the pinkwashing that takes place every October. We even both had dogs who were considered part of the family.


Judy never stopped being angry about cancer. She railed against the unfairness of a world that afflicts so many of us with this evil disease.


At the same time, she never stopped appreciating the beauty in the world around her - in her environment, at work and in her family and friends. She never stopped finding things about which to laugh.


It's because of Judy that I applied for Little Pink Houses. I know that her family's week with the organization was a glorious experience (and so was mine). We often said how great it would be to meet up in person. Jeanine from Pink Houses did meet both of us and told me she is confident that we would have liked each other as much in person as we did online.


Judy, my friend, I miss you already. My heart goes out to everyone who loves you, especially Nate and Frank. Many, many, many people mourn your loss and celebrate your life.

All I want for Christmas is a wax and stilettos ....

What??? It's totally normal! 

My amazaboobs family "strong like bull"

No really all I can think about is "shit I need a wax". Some people prep for surgery by packing their bags, making meals and freezing them and getting the house in order. Truth is I threw some pjs into a bag with my make up bag cause I am so sure I will be up for applying foundation! My breastie Amy came by with stuffed peppers, lasagna, chili and a whole bunch of other goodies so why would I bother?? As far as the house goes, well shit it ain't gonna crumble. I know if Nikki is reading this she is so proud! The old me would have gone over board packing, cooking and cleaning, the new me ain't got time for that!! Yes all I can think about is shit I need a wax and I don't just mean ear brow. I got a hair cut last week, I have my priorities!! But am running outta steam and time doc appointment tomorrow got switched and it's messing with me. My very sweet girlfriend owns a salon and wants me to stop in, maybe I'll let her do my EYEBROWS! Doesn't everyone get a Brazilian before a DIEP??

Shoes, can we please talk shoes!! I have looked a little but haven't found the right ones. I mean they gave to not only have attitude, be fabulous and sparkly but go with a hospital gown. Do you have any idea how hard that is?? Wear something you have you're thinking, possible but come on it's a 10 hour surgery!! I deserve a pair of shoes that will keep our (by our I mean the posse that will show up with me) minds off the surgery and on to things that make you feel strong. What does that better than a 6 inch stiletto??? Plus it's a trademark we don't want to let the hospital staff down. Shoes make me feel strong and full of attitude, just what I need to go into surgery where I will be laying flat while my very capable doc and his lovely smart assistant does their magic! This is his "signature surgery" seriously it is. He is one of 40 doctors in the US that do these. I feel like I'm getting the Dolce & Gabbana of plastics I think amazaboobs shoes are a must!

A little partyyyyyy to say bye bye to the foobs!

Am I scared?? No I won't be doing anything but laying there and I know how to do that just fine. I have awesome doctors by my side not to mention I'm brining a tray of Italian cookies so they will be on their game. The recovery will suck but it's doable, the healing will take time but it's doable, I will slowly get a little of me back and that's do-fucking-able. This has to happen for me, for my mind and body. Cancer took so much from me I feel like I'm taking back just a little. Tom will post Wednesday when I go in and throughout the day, remember it's 10 hours and he will not be nearly as witty as me but the grammar will be impeccable! I wonder how fast my posse will annoy the waiting room staff, I wonder how much coffee MC and Tom will drink, I wonder how many times my dad will say "how do you think it's going in there", I wonder how many times GDeb will get everyone something anything to calm them, I wonder if my sister will breathe, I wonder if my brother will stay. The great thing is they all have to deal with each other without me answering, telling them what to do, what to
get or organizing lunch. Really if you think about it they are getting the break! All I know is someone better be shining my friggin tiara!!

Yup Dolce & Gabbana, do they come in a 6.5?!?

Motherless Daughters

 

 

 

 

Sometimes I go about my day and the thought of my mom never enters my mind. Lately, she is nonstop.  There are times in a child’s life that they just need their mother. I was so lucky growing up to have 2 amazing Grandmothers, a sister, a godmother,  a big brother, a dad like no other, Aunts who went beyond their role, my mother’s friends who took me in,  and friend’s mothers who made it their duty to treat me like a daughter (Momma Lorraine you always make me feel like a daughter). Because of all of them, I was so filled with love that it was easy to get past the loss. Through a LOT of therapy I learned to become who I am, knowing that I was just like her and to stand proud. Yes, sometimes the loss is intense but you learn to get used to it. Anyone who says “you will get over it” is full of shit and does not know what they are saying. You never get used to a losing a loved one, you just learn how to cope.  

My mother died just a few weeks after my 1^stbirthday. It doesn’t make my loss harder or less than my sister or brother, it just makes it my loss. I grew to love the woman in this picture without ever even knowing her; a mother’s love is that strong. During my journey with stupid dumb breast cancer the loss of her has been the biggest challenge. Some days it would be so great to have her, but I do not let myself go there. I remember that in some capacity she is in my life, she is here.  I am told she was a fierce, opinionated, strong willed, out-spoken, hard ass of a woman. HMMMMMMM……I think we may have butted heads, A LOT!

San Antonio Breast Cancer Symposium #SABCS

More than 9,000 people from over 90 countries are in San Antonio this week to discuss the latest breast cancer research.  


Since I'm not able to attend as I had planned, I am providing the NEXT best thing -- aggregated tweets from #SABCS -- thanks to a tip from Sally Church (@maverickNY).

a message in my library book