Stupid Dumb Breast Cancer: Reasons I hate stupid dumb breast cancer

Stupid Dumb Breast Cancer: Reasons I hate stupid dumb breast cancer: #1 LOOK WHAT YOU DID TO ME!!!! #46 because it is sneaky.  I feel great! I am healthy and eat right (I have been a vegetarian since I w...

first day

My insides are churning today. I am unable to concentrate on any one task. And I didn't sleep well last night.

You see, today was the first day of school.

D. started Grade 1 at a new school. S. went into Grade 6 at the same one.

I remember Grade 6. It was when it started to be all about my peers. I remember the drama, the intrigues, the intense friendships that formed and broke up. And I remember the hormones.

And as for D., I can't believe that my baby is old enough to be in Grade One. He has been counting down the days for weeks, complaining that the summer was too long and that he just wanted to start school already. His expectations are very, very high (although last night when he couldn't fall asleep, he asked my spouse, "What if I get bad grades?") and I worry that he will be greatly disappointed.

Yes, emotions ran very high in our house this morning.

And the kids were pretty worked up, too.

smiling can't cheat death

I'm a reasonably happy person. And I believe that concentrating on the half full part of the glass has helped me to cope with many aspects of my life, including breast cancer. However, there have been times when a good wallow or a raging tantrum have been just as necessary and cathartic.

And I don't, for even a second, think that people who worried too much, or got mad or who didn't have a positive attitude brought cancer or their own deaths upon themselves. Nor do I believe that temperament or attitude is what causes one person to go into remission and another to succumb to the illness. I find the belief system that blames the patient to be repugnant.

In many ways, cancer is a crap shoot. It helps to have excellent medical care, good nutrition and the resources that help you cope with the disease and the treatments' side effects. But luck plays a big role in survival as well.

I've been thinking about this lately, and so it appears have other women. Yesterday, I stumbled on a great post at Uneasy Pink, by Katie, who, in turn, pointed the way to Coco, guest-posting at Journeying Beyond Breast Cancer. These women really tell it like it is.

Last week, Canada lost Jack Layton, a leader who was, by all accounts active, optimistic and happy. And we lost him way too young. Many media reports used the common phrase "lost his battle with cancer." Jack didn't lose a battle - there was no failure on his part - he got cancer and died. No amount of positive thinking could have changed that.

(Shout out to my friend Sharon, who first used the phrase "tyranny of positive thinking" in my presence. She has kindred spirits out there, too).

Cross-posted to Mothers With Cancer.

Living with medical errors

I have a picture some place of when I went for knee surgery in 2001 of me home from the hospital with a big bandage on my right knee and the word "NO" scrawled in big letters on  my right knee. This was written by the surgeon after triple confirming with me.

Then I have the memory of me after gall bladder surgery in 2008 where I heard the nurses talking about the excessive bruising on my abdomen after a laproscopic procedure. Basically I heard the doctor must have been really rough on me because of the size and speed at which the bruise arrived - and ho w long it hurt afterwards.

In the past few years the state of Massachusetts has started requiring hospitals to report medical incidents - anything from a fall, surgery problem, wrong medicine, bedsores - annually. In the past three years - 2011-2013 - the rate has risen extensively from 366 incidents to 444 to 753 in 2013. And you say 'why the increase?' How about the electronic reporting system was adopted in 2012.

This all makes me say hmmmm..... Its nice the state wants the data reported and is requiring the electronic reporting system so that things can't be swept under the rug, so to speak. But what about me as a patient?

There is all sorts of advice given but I think it goes down to your comfort level. Lets face it, errors happen in life, 'to err is human'. But as patients we need to speak up and ask questions - what will happen, what should I expect, and communicate with family members so they can ask questions.

I would like to say that of the 753 events in 2013, 282 or 37.5% were from falls. The next largest group was 230 or 30.5% were from bedsores. The leading number after that was 44 serious injury or death from medication error.
 

Talking Teal with Cancer Advocate Rebecca Esparza

On Thanksgiving weekend in 2001, Rebecca Esparza woke from anesthesia to find her parents holding each other up and crying. She took one look at their faces and promptly went back to sleep. Neither Rebecca, nor her parents were prepared for what was to come.
         But then, who could be?
         She was 30 years old and about to learn what the doctors told her parents. A radical hysterectomy had been performed. The tumor on her ovary was malignant and not the benign fibroid discovered in two earlier surgeries. Her diagnosis: germ cell ovarian cancer, a very aggressive, though treatable type of ovarian cancer that occurs in roughly five percent of the 21,000 cases of ovarian cancer diagnosed each year.
         Ovarian cancer, one of the sneakier cancers out there, is an especially difficult one because detection is t problematic. It represents approximately three percent of all cancers in women and is the deadliest of all gynecological cancers. Simply having ovaries – being a woman – and growing older puts one at risk. The overall lifetime risk of developing invasive cancer is low at one in 71. Unlike breast cancer,  there is no one message about screening or detection.
        September is “Ovarian Cancer Awareness” month and an attempt to increase understanding of the pressing need for improved detection and treatment methods.

The cancer diagnosis and loss of childbearing capacity would have been enough for any woman. Rebecca found she’d been transferred to the Labor & Delivery floor with all its joy, balloons, beaming grandparents and crying infants. When she requested a transfer she ran into the second hurdle she’d battle along with her
cancer: indigent care.
         As a free lance marketing and public relations consultant Rebecca, like many young adults diagnosed with cancer, did not have health insurance. She cashed out her 401K and her parents took out a second mortgage before she even started chemotherapy. Then there was the chemo itself and all its long-term side
effects. “The oncologist I ended up with was pretty brutal. She said to me, ‘I sure hope you’re not an athlete because this chemo decimates your lungs. She also said I would lose my hearing...neither happened! ”
          Germ cell ovarian cancer is quite similar to the kind of testicular cancer that champion cyclist and cancer advocate Lance Armstrong was diagnosed with in l994. Where Lance was able to change the chemotherapy drug that damages lung tissue, Rebecca didn’t have a choice.  "My oncologist suggested 'bleomycin' was the preferred drug to battle my germ cell, not 'ifosfamide.' My chemo regimen was 'BEP' and Lance’s was 'VIP,'"she said.
          Her caregiver of 16 years, Robert Marraro and her family kept her afloat during her treatment. “You can’t ever underestimate your family, you can’t say thank you enough,” she said. “They’re the ones who helped me get through this. My Dad was the one with the sense of humor, who tried to make me laugh and who pushed me out the door to my chemo appointment when I was too sick to care.”
          Yet, she says, “I was lucky to get treated."
          Ultimately she turned her experience of “being in the dark” and the “lonely desperate time” trying to find resources into a passionate advocacy and navigation assistance on behalf of underserved populations in Corpus Christi. “There wasn’t one place I could find that had updated info on services for patients battling cancer in Corpus. Robert and I decided that we did not want this to happen to any other family. That’s where we’re coming from,” Rebecca said.
          To that end they are in almost everything cancer related in her community – the American Cancer Society, the Make a Wish Foundation and LIVESTRONG. Rebecca and Robert started a community outreach group in 2003 after becoming connected with the Anderson Network at MD Anderson Cancer Center in Houston, where she now goes for treatment.
          After celebrating her fifth “cancerversary” in Las Vegas late in 2007 she started to experience a somewhat familiar run-down feeling. The following April. she was diagnosed with papillary thyroid cancer. Removal of her thyroid and 50 lymph nodes followed.
          When it appeared that radioactive iodine treatment wasn't necessary her physician said, “It’s another miracle for you,” her physician said.
           And for us, too.
           The second cancer and anxiety that stems from frequent follow-up do not slow her one bit. She ticked off some of upcoming cancer events – a conference in Washington for the American Cancer Society’s Cancer Action Network (ACSCAN), a Make-A-Wish get together for volunteers, October 2 LIVESTRONG
Day, the LIVESTRONG Challenge and yes, back to where we started, “Teal Toes.” She is arranging media coverage for a local spa that is hosting a special ovarian cancer awareness promotion with teal pedicures.
           She laughed about the color. “I’ve learned to take it all in stride.”
                                                                        #   #   #

You can find Rebecca Esparza on twitter @rebeccaesparza and on Facebook. Rebecca, 39, and Robert Marraro live in Corpus Christi, Texas.   In 2008 she was awarded a LIVESTRONG Challenge Award by Lance Armstrong.  She is also a recipient of the American Cancer Society's Presidential Award and an ACS "Hero of Hope."

Resources on Ovarian Cancer:
Ovarian Cancer National Alliance
Libby''s Hope

This is the first in a series of articles on ovarian cancer.  Watch for next week's post!

Boob juice

Yesterday was erratic and long, stressful and painful, yet full of energy, smiles and a really great time! I had a sono of my thyroid which raised some questions but it will be fine I am sure. Then I got my first fill and what a fill it was! Genevieve called it "boob juice" which I loved so that's what I am calling it now. They take a metal connector to find the right spot then the injection starts! No joke the needle resembles a turkey baster. How did it feel!??  STRANGE!!!! It made me a little nauseous. Feeling the liquid go into a foreign plastic bag in my chest just made me feel queasy, yuk! It didn't kill, it was just way uncomfortable in a painful way. I mean, shit, I had a double mastectomy and delivered four babies!  After my awesome Boob Juice Injector Babe did the right side we looked and you could really could see the difference. The right looked big and the left deflated.When she did the left, Genevieve took a video of the other side getting injected and you can see it grow! This whole process is wild. Medically, wow, mentally ugh, physically ouch! Still blows my mind I have stupid dumb breast cancer, I mean WTF?! Glad I have great doctor,s just wish I didn't need them.
We ended the night with some great friends, family and deep fried pickles! We rocked out to the Commodores, funny cause I got a brick house in my chest! They rocked the house (well not at all they were horrible but we had the best time). A few cocktails and I didn't feel the pain. Until about 1am then fuuuuuucccckkkkkkkk. My shoulders hurt, my back, armpits all are so sore. She said I would feel like a just had a good workout. Yes that's one way to describe it but it's more intense than that. Sleeping was no good, maybe a couple of hours total. I know it won't last but shit. I hate how I start to feel just a little better only to get smacked again.  I just want to move past this all.
Now the big decision, when do I stop the filling? The verdict was straight down the middle last night. Most Chicks told me one more fill, shocking. Not sure what I will do but it's my choice. I feel like this is the only thing I can control. So I will control it yet still take comments that will be evaluated then processed for the final ruling. My ruling no matter how many Tom says "DD"!!!

all good things

Today is a pretty emotional day for my little family.

Tomorrow, my youngest, will start Grade One at a new school. While that's a pretty big deal in and of itself (at least it's the same school his big brother attends), this also marks his last day at the day care housed in his old school.

My family has been involved (except for a few years between kids and when D. was in home care), with the Glebe Parents' Day Care since 1999, when S. was a toddler. It's a great day care but the staff at their First Avenue program are truly exceptional.

When S. was "emergency airlifted" out of First Avenue in Grade One, they re-opened the day care an hour early so that staff could meet him at the bus (his temporary school was further away and the school day ended earlier) for the rest of the term (from February until June).

And, earlier this year, when I needed a space to launch my book, the staff offered their wonderful facility free of charge. They decorated it so beautifully and there was even a message on a chalkboard in the washroom telling me how proud they were of me.

And those are just a couple of examples.

This past week end, D. and I made a poster-sized card with a photo of our family. We all signed it. We also made cookies (I burned the first two batches, my spouse did the baking of the last couple, as I was becoming hysterical). We also gave them a bottle of gourmet chocolate sauce to pour in their coffee.

D. and I made cards for the three teachers who hosted the book launch. I want to make scarves for all three of them but of course, only one was finished. D. had me paste photos of the scarves in the cards for the other two, so that they would know what they are getting (I made a "Lace Ribbon" scarf for J., T. is getting a "Clapotis" and, if I can manage the pattern, I want to make "Juno" for A.)

I had T. and D. deliver it all to the day care, confessing to my spouse that I am "emotional coward." Apparently, the staff and T. have decided that I am not to be let off the hook, though, so S. and I will join T. when he goes to collect D. at the day care this evening.

There might be tears.

These photos were taken first thing this am and are thus not particularly flattering. I just wanted a photographic record.

To distract myself this, I thought I'd do this nifty little book meme that Sassymonkey wrote about at BlogHer:

"Using only books you have read this year (2009), answer these
questions. Try not to repeat a book title. It’s a lot harder than you
think!

Here's the meme with my answers. If you haven't read enough books so far this year to answer all the questions go back as far as you need to get enough books. If you've played it on your blog leave a link so I can go visit."

I was planning to do it even before I noticed that Sassymonkey had used my book to answer one of the questions but that particularly tickled me.

Describe yourself: Dragonslayer (Bone #4, Jeff Smith)

How do you feel: What It Is (Lynda Barry)

Describe where you currently live: Three Day Road (Joseph Boyden)

If you could go anywhere, where would you go? Toronto Noir (Janine Armin and Nathaniel G. Moore, eds.)

Your favorite form of transportation: Walk Through Darkness(David Anthony Durham)

Your best friend is: Tipping The Velvet (Sarah Waters)

You and your friends are: Casting Spells (Barbara Bretton)

What’s the weather like: All the Colours Of Darkness (Peter Robinson)

You fear: The Price Of Darkness (Graham Hurley)

What is the best advice you have to give: Nobody Move (Denis Johnson)

Thought for the day: Don't Look Twice (Andrew Gross)

How I would like to die: A Good Death (Elizabeth Ironside)

My soul’s present condition: Hurry Down Sunshine (Michael Greenberg)

I seem to have read a lot of books with darkness in the title.