Well, it's not going to kill you

Fight Like A Woman

I visit this site every day http://www.thebreastcancersite.com

They've been having a Fight like a Woman photo contest which caused me to reflect upon what fight like a woman really means.  It's not fighting in the traditional sense of the word.  You're diagnosed and suddenly you find yourself thrust into this foreign world.  You're immediately, or you should be, hooked up with a surgeon, medical oncologist and a radiation oncologist.  All strange territory and they're on your side but when they're assaulting your body it's some times hard to remember that fact.

That's the outer level of fighting surgery, chemo and/or radiation.  The real battle is in your heart and mind.

I've seen people who've just given up after a diagnosis.  They just assume they're going to die and take their hearts and minds down that road.  I've heard of people who just ignore the very obvious fact that they are sick and end up dying rather than fighting.

The inner level of fight is what gets you through.  The positive attitude that this disease is NOT GOING TO WIN.  You endure surgery or surgeries in my case.  You let yourself be pumped full of drugs that can kill you and you let yourself be radiated knowing that it might cause skin cancer, rare but it happens.

All the time thinking THIS DISEASE IS NOT GOING TO WIN.  That's what is means to fight like a woman.

October is breast cancer awareness month

People pay attention with one little click on this link could save a woman's life.

I never thought I'd put a donation button on my site again but in this case I'm changing my mind.  All monies collected with be donated to the Sutter Women's Center Integrated Health and Healing Program in Santa Rosa, CA.

Thank you from this VERY GRATEFUL survivor, 4 years, 4 months, 11 days and counting.

Wishin' and Hopein'

I had an assignment today.  I needed to go pick up a case of wine from a winery that has been donated to Catwalk.  It was a beautiful day and a beautiful drive.  They live on the other side of the Valley from us so the flora and fauna is very different.  Nice, but I'd never give up my redwood trees.

The wife of the winery owner was the person I met.  She had just had a double mastectomy, the lymph nodes in her right arm removed and she still has to have chemo.  I asked who her surgeon had been, it was the ever wonderful Charlie.

We talked briefly I told her I had just made it past year 4, my type of cancer being more likely to reoccur during the first 5 years after diagnosis.

She said she hadn't started treatment yet, I suggested getting a port - I'd suggest getting a port to any one of you that has to has chemo.  The thought of being stabbed twice every three weeks was more than I could bear.  I have tiny slippery veins, blood tests usually end up coming out of the back of my back - FUCKING OUCH.  We talked about the astonishing number of women that are being diagnosed - GO GET YOUR MAMMOGRAM!!!!  And if you have a family history force your doc to fight with your insurance company to get it covered.

As I left I realized that I had not mentioned anything about the IHH program to her.  Knowing Charlie he probably mentioned it but also knowing Charlie he inundates you with information.

Here's wishing, hoping, begging, pleading that we develop a cure for this awful disease.  Or at least some version.  That's the problem with breast cancer, there are so many types.  SO GO GET YOUR MAMMOGRAM NOW and if there is not a digital mammogram in your area fight for one and drive to a place where they have one.  Not a machine where they digitize the film, a digital mammogram machine.  If you can't make it to a breast center demand that the very best radiologist reads your films and just to be sure have her or him read them again.

Yes this is a frightening, terrible, scary disease but the sooner it's found, the sooner you can receive treatment and the better outcome you will have.

The girls made it another 3 months

Yep, I had my 3 month feel up today.  All is well.  Deep sigh of relief.  Amy and I talked about changing my exams to every 6 months, then she refreshed herself on my pathology and declared every 3 months until May 2011.  That will be five years.  I can't believe I'm almost at 4 years!

Because of my pathology, triple negative, the recurrence of my cancer within the first 5 years is very high.  After 5 years is virtually a cake walk.

I would love to tell you I'm not terrified every time I go in for a feel up or every time I go in for a mammogram but I can't.  I'm scared every fricking time and I refuse to let other women think I'm not.

Amy ordered my annual mammogram today, but it's not just a regular mammo it's a diagnostic.  It scares the shit out of me every fricking year.

What if it's come back?  What if I have to have surgery again - that's ok because I have Charlie.  But even worse what if I have to have chemo again?  Dr. Fun "retired" to work for Amgen on breast cancer research.  There's not another oncologist in the county that I'd want to take care of me.  I'd have to head to San Francisco.  Amy did leave me with a bit of good news today, RR is considering hiring a FEMALE oncologist that specializes in breast cancer.  She's supposed to be great.  I just pray I never have to go through chemo again.

It's way to late, I'm way to tired, my tooth hurts and I need to get some sleep.

Catch you later

Wishful thinking

I periodically go to sitemeter and check my stats.  At least once every couple of weeks there pops up a "will breast cancer kill me" search.  It just breaks my heart I wish I could reach out to these people and say No probably not.

It's going to take you for one hell of a ride but these days it's unlikely to kill you unless you have ignored that lump in your breast for too long, or haven't gotten a mammogram for a while.

If you're lucky, if you've paid attention to your body  you or your mammogram will find a tiny little lump that can be dealt with easily. You will most likely have a tumor with positive hormone markers, the surgeon will remove the lump, you'll get 33 days of radiation and you'll be put on a drug for 5 years.

If you're not so lucky and have lymph node involvement that's a bit more complicated because you'll probably end up having to have chemo to try and keep it from spreading further through you lymph system.  Trust me chemo is NOT fun.  I have an unusually sensitive body chemistry.  My treatments were every 3 weeks and I would be sick for 15 days after.  How I envied those women who came in on a Friday afternoon got their chemo and went merrily on their way back to work on Monday.

And if you're like me, your markers will come up triple negative.  That means there is no hormones, progesterone or HR2 in your cancer.  Makes it a bit more tricky.  This cancer is very aggressive.  I didn't know it at the time I was diagnosed and was dead seat against having chemo.  No way, no how.  Then came the pathology reports, a visit to Dr. Fun who filled my head with so much information I thought it would run out of my ears and subtly pushed for chemo.  She finished her explanation, told me she was going to call Amy and tell her exactly what she told me and that I should call Amy and discuss it.  We talked and Amy said in no uncertain terms "HAVE THE CHEMO".  Triple negative cannot be treated with after drugs like hormone related cancer can.  It is also more likely to reoccur in the first 5 years after diagnosis but after that you're virtually home free.

I'd like to reach out to each and every one of those searchers and give them comfort and hope but I can't.  All I can do is post information like this, say get a mammogram EVERY YEAR- preferably a digital, not digitized film.  If cancer is found it will be in it's early stages and you'll be OK.  Another suggestion is as soon as you're diagnosed find a therapist in your area that specializes in breast cancer patients.  I wish I had done it at the very beginning but, alas I was too shocked to even think about my mental health.  You come out of this journey a different person.  You may be lucky and retain most of yourself or you could be like me who 2 1/2 years out I was considering suicide.  You can read my archives to see what happened.

I'm telling each one of those searchers now EMAIL me.  I'll try and point you in the right direction and besides I can be there for weeping on  a virtual shoulder or just someone to talk to in the middle of the night when you're laying there absolutely terrified because you're really on your own and no one else can understand.

I understand.  I've been there.  I lived through it.  It was not easy, it was not pleasant but I LIVED THROUGH IT.

No but it's going to piss the living hell out of me.

This assault upon women's healthcare.  Of course you need to take into account that this public health studies were begun under the Bush administration so there was probably no science or scientists involved.

However now that the crackpots in the House and Senate have their bribed little hands on our health I'm feeling a bit wary.

Jen asked in a comment on the post I wrote about her and the 3 day walk "what should we do?"  Because my focus is breast cancer, duh, I told her to talk to the doc who delivered her kids as a first step.  As an OB/GYN he or she is the perfect place to start.  Lot's of tumors get found by OB/GYN's.  I suggested that she find out if there is a digital mammogram machine in her community, if there's not one in San Diego we're all in big trouble.  I suggested all of you start rabble rousing in your communities and raising funds for digital mammo machines.  NOT digitized films mind you a digital MACHINE and along with that a dedicated radiologist to read the films.  No more what ever radiologists hands the digital pictures happen to land in that day.  We deserve and should demand nothing less.

Don't be intimidated if you're told that can't be done, especially you Kaiser people.  Yes it can and the Sutter NorthBay Women's Breast Care Center is living proof.  It's not easy, it took us 10 years but it got done and we can now say with pride that we have the best equipment available with literally the country's best radiologist to read them.  Our ultrasound machines come from a place the sounds like "WE".  "We" sends it's people to our radiologist to learn what can be done with their machines.

If any of you are interested in more info please feel free to email me.  If I can't answer your question I can certainly find someone who can as my personal doc is also director of the Center.

Fellow women, we need to unite and make it very clear we will no longer be pushed around.  WE have voices and we can raise them very loud if we choose too.

I shall now remove myself from my soapbox for the evening.

The Pink Glove Dance

I was sent this email by a friend who has a friend who's daughter-in-law thought up this project.

"Our daughter-in-law,  Emily (MacInnes) Somers, created, directed and choreographed this in Portland last week for her Medline glove division as a fundraiser for breast cancer awareness.  This was all her idea to help promote their new pink gloves.  I don't know how she got so many employees, doctors and patients to participate, but it started to really catch on and they all had a lot of fun doing it.

When the video gets 1 million hits, Medline will be making a huge contribution to the hospital, as well as offering free mammograms for the community.  Please check it out.  It's an easy and great way to donate to a wonderful cause, and who hasn't been touched by breast cancer?"

If you're reading this blog you've been touched by breast cancer, you know how ugly it is because you've read about it here.  Drop whatever it is you're doing and go watch in now.  It's a blast!

The Pink Glove Dance

The day finally arrived

with breaking hearts we let our beautiful Max go today.  It was way past time but as he was really Larry's dog so I had to wait until he was ready.

We are blessed with vets that make house calls so none of us (Larry, Max and I) had to make the long trip into town.

We had him laying on a blanket with a fan blowing a slight breeze upon his beautiful self.  We'd given him his pain pills in the morning so he was already kind of mellow.  Marty, his vet gave him a sedative first.  He actually feel asleep and was snoring so we know when she administered the real drugs he didn't feel a thing.  We spent a few hours with him, Larry sitting and thinking while I petted him.  Then had our tenants help us move him to the place Larry choose to bury him.

He has a lovely spot by a Chinese Pistache tree.  One of his truck beds is in the bottom of the hole which had been lined with plastic to keep his scent away from the wild animals (forest and all you know)  We had him wrapped in a blanket, his other truck bed on top, a layer of dirt, a wooden barrier, then more dirt and a couple of beautiful but heavy rocks.

You all know how I've struggled with this but I had to wait until Larry was ready.  He was finally ready today.  We buried Max, came back into the house and shared favorite Max stories, Dr. Sanity - God bless her soul called twice to make sure we were ok.

 We cracked open our last GOOD bottle of champagne and celebrated our puppy boy.  We were so lucky to have him in our lives and we will miss him so.

Before he left, I tasked him with finding a new puppy for "Dad" while he's busy enjoying Dog Heaven.

Stats

I check my stats often via sitemeter.  I have an average of 14 people per day hit my site.  Clearly most of them don't read what I have to say but some do.  I often wonder if it's because they're my friends - thank you Erin, Connie & Nicki.  Or if it's people looking for breast cancer information.  As you can see I'm transitioning away from spending a lot of time on breast cancer.  I'll never abandon it because it will ALWAYS be a part of me now.  

But I'm trying to add other information because I want patients and survivors to realize that you need to move on.  I can hardly be the "spokesperson" for moving on considering the difficult time I've had and am still having.  But I am getting better, slowly, slowly, painfully getting better.

One of the things I suggest is that as soon as you're diagnosed find a therapist.  You may have to do some serious hunting to find the right person for you.  Just don't be stupid like I was and wait until you're scaring yourself and the people around you.  Until you are seriously thinking about killing yourself (forget suicide it's way to tame a word) or checking into a mental hospital.

It's hard suddenly going from a patient having all kinds of support to being a survivor. Does any one even know what it really means to be a survivor?  Because let me tell you lack of disease does not make you a survivor.  Your body has survived but your mind still has to deal with all the trauma that goes with being a having had all this treatment.

Walking into your oncologist's office (at least in CA) and seeing the sign that chemicals in this building may kill you - well duh.  Getting stuck with needles, getting pumped full of drugs.  Some that you may be allergic to - oh that was fun.

Can you tell that I went to an Advisory Council meeting today???

On Therapy

If you are coming to this site because you have just  or recently been diagnosed PLEASE LISTEN (ok READ) CAREFULLY.  In retrospect I wish I had started seeing Dr. Sanity (my therapist) when I was first diagnosed.  I think that life would have proved to be a bit less traumatic during the  2 surgeries, chemo, radiation, ruptured bowel and subsequent emergency surgery and recovery, PET/CT scan and all the myriad things that you have to go through.  Also if you need chemo I STRONGLY recommend getting a port.  It's minor surgery and keeps you from getting stuck in the veins ( mine happen to be small and rolly) every time you need blood work or your chemo.

I was blessed to already have been a member of the Community Advisory Council for the Breast Care Center for a few years before I was diagnosed.  I had a biopsy on Friday and my doc was on the phone Sat. morning.  She'd already arranged appts with the nurse navigator and gotten in touch with the surgeon.  It was like falling into the arms of your family.

Things would not have piled up until I had a  break down in Amy's waiting room, again in her exam room, was put suicide watch and hard core drugs. 

You will find wonderful support from your docs, the nurses, the techs and your friends when you are diagnosed.  Beware it may take time for your friends to come around, but they will and they will stay through side effects, shaving your head, hearing you moan about losing your hair, and more moaning about losing your hair, you name it, they will be there.

But once you're done with treatment all of a sudden all those medical people are not there.  Your friends will still be there they just might be a bit confused for a while, they'll get over it.  You're done, you're cured, you're expected to go on as if nothing happened to you.  However your life has changed forever. Follow up doc appts, more frequent mammograms.  Possibly even ultrasounds, MRI or PET/CT scans.  It all depends on your type of cancer and how advanced it is.  And always that tiny fear of recurrence that lurks in the back of your mind.

YOU NEED SOMEONE IMPARTIAL AND SAFE THAT YOU CAN TALK TO.  SOMEONE WHO CAN HELP YOU LEARN HOW TO MAKE THE TRANSITION FROM PATIENT TO SURVIVOR - TRUST ME ON THIS.

I didn't do it and now I'm paying the price.  I'm  not going to go back and make the links, there are far to many.  You can read my archives.

OMG Poor Dr. Sanity I cannot shut my brain down. It's like a train wreck where both the engineer and brakeman have bailed and the train is either going to crash or run off the tracks.

She likens it to taming a herd of wild beasts

Just take my advise and have someones arms you can fall into while you recover emotionally.  I'd also recommend starting a blog or diary.  It helps you get things out of your mind and onto "paper".  If you're like me you obsess.  It also gives you a place where you can record the questions you want to discuss with your various docs.  All of a sudden you'll find you have a hoard of them.  My advice is to pick out one as the point person.  Run all questions through him/her it's much easier that way.  You have one person who knows the whole picture.  I choose my regular doc as she is very well versed in breast cancer.  I could ask her to translate the doctor speak I got from the surgeon, medical oncologist, radiation oncologist and send questions back the same way.