seeking inner calm

Posted on May 19, 2011 by carla

Ok so yes, I have to get to the “heart” of it all today and I am anxious.  Maybe this happens, but since I am but a newbie to the land of breast cancer and surgery please bear with me.  That lovely man of mine, my friends and family have been troopers to put up with my stress camp the past 24 hours. And I am all stressed about this still because I am still not into cardio.  At my site. Don’t they get that I am trying not to stress out about this?  Sending me from pillar to post is not helpful…I am trying to be the patient patient and it’s still not working so well today…

My breast surgeon and my other OB/GYN have both checked in.  These women are truly amazing and I will be forever indebted to my OB/GYN who said “we have to really look at this lump. I can’t take that kind of risk with you.”  And the ladies of my surgeons office? They are getting used to the hurricane on the phone that I can be. And I love my nurse navigator.  All these voices on the end of the phone and they are just so nice.

I have my referral in for my surgery too.  So save the heart, it’s all falling into place.  And I like the place and the person who will be leading my radiation.

It’s just that this is not only surreal but a real time eater.  Hours just fly by.   I have been reading other breast cancer women’s blogs.  As I discover them, or they me, check the links column to the right of the posts.

I am in this crazy sisterhood for real.    My inner calm is almost back. May it stay with me the entire day.

Oh I have yet another writing project I started.  I have not linked it here yet, the two are separate.  What do you think?  Should I be really brave, have a total coming out party and link them up?  Have a read here and let me know your thoughts.  Maybe I am being silly but since that ex of mine used to dismiss all my writing as self-aggrandizement sometimes that voice pops into my head.  Realistically I know his sniping came from the fact he didn’t have it in him to take pen to paper as they say.

I also got a tip to read a blog called Onco Girl – read it – it’s amazing.

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more, more, more….

Posted on May 18, 2011 by carla

I know you people wish I would give it a rest…but today  I am on a quest. (And apparently “I am a poet and I did not even know it”)

Do I file this under boobalicious?

So tamoxifen, my buddy drug post surgery for the next five years will shut down the estrogen in my body, turn off my ovaries, and send me into menopause.  Alrighty I can deal with that.

But a friend and survivor whom I adore because she is just so blessedly calm and practical in all things and breast cancer said to put on my to do list once I have a medical oncologist and to also ask my breast surgeon about this in more detail  later: because studies show that after three years of tamoxifen the ovaries and things estrogen are apparently so in retirement and uninterested in running naked through my body that these studies now show switching to aromotese inhibitors might prove to be a way to round out years four and five.

I also am curious about other genetic testing in addition to what I mentioned in a previous post about BRCA testing.

So I have pulled a couple of things off the Internet to keep a note active about this:

BreastCancer.org: Aromotese Inhibitors

Aromatase inhibitors stop the production of estrogen in post-menopausal women. Aromatase inhibitors work by blocking the enzyme aromatase, which turns the hormone androgen into small amounts of estrogen in the body. This means that less estrogen is available to stimulate the growth of hormone-receptor-positive breast cancer cells.

Aromatase inhibitors can’t stop the ovaries from making estrogen, so aromatase inhibitors only work in post-menopausal women.

There are three aromatase inhibitors:

  • Arimidex (chemical name: anastrozole)
  • Aromasin (chemical name: exemestane)
  • Femara (chemical name: letrozole)

Each is a pill, usually taken once a day.

 RICHMOND, Va., May 17 (UPI) — An immunity biomarker may predict a breast cancer patient’s risk of cancer recurrence, Virginia researchers say.

Masoud Manjili, assistant professor of microbiology and immunology at Virginia Commonwealth University Massey Cancer Center, and colleagues say the breakthrough may lead to new genetic testing.

“We know that the body initiates an immune response when it detects cancer, and immune system cells are usually present at the site of the tumor,” Manjili says in a statement. “Our test differs from currently-used tests by looking for a biological response to the presence of cancer, and not relying on genes expressed by the actual cancer cells.”

The study, published in the journal Breast Cancer Research and Treatment, found a specific, five-gene signature related to tumor infiltrating immune cells can accurately predict relapse-free survival.
Read more HERE

ABC NEWS: Predicting Breast Cancer’s Return

OPINION By LEN LICHTENFELD, M.D.
Feb. 7, 2007

Tuesday’s announcement by the U.S. Food and Drug Administration that it had approved the MammaPrint test represents a step forward in our efforts to more precisely define which women with breast cancer require adjuvant (preventive) chemotherapy following primary treatment for the disease.

Adjuvant chemotherapy for breast cancer has been one of the great success stories in cancer treatment over the past 30 years. Through the efforts of many researchers, women and their families, we have learned how to prevent recurrence of breast cancer and increase survival for many women with breast cancer. As a result, we have seen steady declines in the death rates for women with breast cancer.

We also know that we provide adjuvant chemotherapy to many women with primary breast cancer who would have otherwise done well without additional treatment. But the types of tests and information about a particular woman’s breast cancer that we have available today are simply too imprecise to allow us to accurately and confidently separate women at high risk of developing recurrent of breast cancer from those who are at low risk of recurrence.

If we could do this, we could potentially avoid chemotherapy in the low-risk women, and thus free them from the need to take adjuvant chemotherapy along with its associated costs, inconvenience and side effects.

Ok people, love you all madly but that’s enough out of me for one day…I know Rome wasn’t built in a day, yet today I feel like I did some redecorating if that makes any amount of sense….

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princess thundercloud

Posted on May 18, 2011 by carla

One of my neighbors years ago told me if I had an American Indian name (and if I don’t get this politically correct, go easy I am really, really cranky right now) it would be Princess Thundercloud.

Pretty funny, but fairly apt.

So I have run around and gotten myself squared away for a look see with my primary care physician, who is a fantastic doctor whom I wouldn’t want to change out. While I am not a delicate flower, I hope she and I do not butt heads tomorrow. I just have a schedule and I am keeping it. And I want to reduce stress.

But I also reached out to another one of my doctors to get this moving along.  I have a plan, I have a surgery date, I have a life. I also need to keep up my work schedule.  I am not a trust fund baby, I am a woman living in the real world with a distinct weakness for shoes and earrings (another topic for another day LOL).

A few friends have weighed in on the EKG thing and one of my doctors, so I have peeled myself off the ceiling and found my inner calm again.  I also had this awesome conversation with the PR guy from LBBC about an idea I had – and he was nothing short of completely cool.  LBBC is a really cool organization if you don’t know about it, you will hear about it here from me. I just like them and their approach – and if you are newly diagnosed like me I suggest you order their Guide for the Newly Diagnosed too…

I try to keep Princess Thundercloud under wraps, but some days she just has to come out and play. 

Now if everyone would just play nice in the damn sandbox I could get this piece of crap cut out of my body and move forward. Just sayin’

After all I have a plan and a life to lead and the bullshit quotient of every day that exists with not just breast cancer but preparing for surgery and dealing with hospitals, doctors, and insurance companies while performing the duties of my daily life is exhausting. 

Our healthcare system should not be so convoluted, complex, complicated and what have you.  It should be much simpler – doctors want to heal as do nurses, but our healthcare system and insurance companies add so many layers.  Who are the layers for?  I don’t want to complain because knock on wood my health insurance company has been treating me very well but I just wish the system was more clear cut and the steps towards my goals from that perspective were fewer and sometimes easier.

This too shall pass…I forget who used to say that to me all the time.  My father maybe.

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i knew things were going too smoothly…

Posted on May 18, 2011 by carla

Some days you just need the F-Bomb.  Today is one of them and I don’t need this crap, nor do I need more stress.

I was wading through the sea of what referrals I need for surgery, what codes, blah,blah,blah and a woman in my surgeon’s office said “do you have a cardiologist?”

WTF????

Uhhh no because I have never had any heart issues…well apparently I might??? Fabulous.

The EKG shows something called an “anterior infarct” and now to add to my list of motherfuckingpainintheassthingstodo I need cardiology clearance and oh yes… a cardiologist.

OK my stress is definitely ramped up now and given the nature of hospital systems, I can’t talk to someone directly, I need to leave a message.

Ok God? You up there? It’s me , not Margaret.  Really? Really? I need a break.

I don’t need this on top of everything else.  I do not need layers of stress on stress.

I just want to get better with as little drama as possible.

Is that too much to ask?

FUCK

 I am grateful if I have an issue and it is discovered NOW and not at some other point, but wow….I need to breathe

UPDATE: Someone from my primary’s office called back and she will see me tomorrow afternoon.  I said to the nurse, “you do understand I have breast cancer and I have surgery scheduled and come hell or high water no farting around  I will have this mass out on schedule and I will get cardiac clearance and the surgeon is adamant on this.   I do not have the time to fuck around with this nor the temperament. I don’t need medical clash of the titans I need a game plan and fast movement and no bullshit.  If I come in tomorrow ideally I want to go then to cardiology.  If this is stress related I need to minimize it NOT make it glow”

We’ll see what happens.  I mean this could mean I have a murmur or something bad or nothing at all.  But I do not need my wallet sucked dry and my stress levels rendered impossible while trying to fight cancer.

After all I have a plan damn it….and a life…I hate bullshit

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rainy day…busy brain

Posted on May 17, 2011 by carla

It’s another rainy day and while great for my herbs newly planted in my garden, it’s making me a little mopey.  Not bad mopey – my head is just a bit crowded. 

My Nurse Navigator called.  Apparently they don’t feel I need further genetic testing at this point and I get the feeling I am not a candidate for mammosite because maybe my mass is stage II but maybe it is on the large size.   So I am just regular radiation.  All conjecture at this point on my part, but I think maybe that is it.  Yes I know the side effects of  radiation  on breast cancer patients I have read probably too much about it….but the thing I read about that bugs me the most is the sunburn-like skin reactions. I burn easily. (Yuck)

So I found a site that lays out the radiation and yes I read most of it already – sorry folks my busy brain wants to know why – anyway check out breastcancer.org – one thing I learned is what vitamin supplements I can’t take during treatment – if they occur naturally in foods I am apparently o.k., but I am to stop taking vitamins C, A, D, and E, during radiation therapy  .

Good lord, so much to learn and think about. 

My surgery is scheduled.  You won’t be learning about that exact date here.  I do need some privacy and I am going to be a bitch about it.  I also want to preserve my quiet time.  Sorry.   The simple thing of it all is I need to take care of myself now.  Which means a lot of you might see less of me. 

I will need help getting back and forth to radiation I think.  I don’t want to be a distracted driver cancer patient.   The doctor handling my radiation therapy is amazing – I haven’t met her yet, but I am damn lucky to get her.

So did I tell everyone a bird shit on my head this past weekend during birthday fest weekend?  Apparently that is like crazy good luck.  I will take it.

Hmmm. So anyway, today is also election day around here and Arnold Schwarzenegger fathered a child with a woman on his household staff.  So very Upstairs Downstairs of him.  Somehow all of this is truly not important, you know?

I have not decided how often I will scribble on this blog, so if I go silent for a couple of days don’t take it as something is wrong, I just might not have anything to say.

And incidentally since some of you have asked – the photos on this blog are mine.  Photography like writing is a catharsis and gives me pleasure.   Ironically, an event where I was a seconding photographer for a friend of mine who is one of the most amazing professional photographers was the Butterfly Ball which is an event put on by those fine folks at Living Beyond Breast Cancer.  It was an amazing event to be a part of even if it was a working night for me.  Flash forward a couple of years and I am now one of them.  Who knew?

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busy, busy

Posted on May 16, 2011 by carla

Monday has been a blur.  The weekend was so wonderful and bam! Reality came pouring back in starting at about 6:30 a.m. Between work and getting more crap scheduled, it was a blur.  Not a bad blur, or particularly upsetting blur, just a busy blur.

Today I also had a call from my Nurse Navigator who is part of the whole team entrusted with my care through this process –  I had phoned her last week with questions. 

My Nurse Navigator was down to earth, cool, and very helpful.   She gave me numbers for support groups, therapists, nutritionists, and many other things.  She went over my familial history of who what, where, and when of cancer and will be asking my surgeon if I should have genetic testing.  She answered questions I had with the potential side effects of tamoxifen.  Some of them have definite ick potential….

Two other things my Nurse Navigator discussed with me that I found really helpful was  one telling people when I needed space and not being afraid to ask for help.   The second thing was that as I got into this and met others with my cancer and those who had other breast cancers, to keep in mind that every case and experience is different.  That is very true.  Especially given one experience I read about today.

It is a very powerful account of a woman’s journey through breast cancer. Wow. Now her cancer is different than mine – much worse truly, and every case is different.  She’s a definite survivor and what she has written is incredibly powerful, but if I wasn’t reading it from a slightly detached perspective I might be really terrified about what lies ahead.  I am not trying to minimize this woman’s experience, it’s just so different from how I  feel thus far. 

Maybe I won’t always feel as positive, but I will tell you what, I am going to work damn hard to stay in this place.

Maybe all that will be easier said then done, but I have to get through what lies ahead.  I want the good on the other side, you know?

Today I also had a visit from one of my oldest friends which was really nice.

The day was a pretty good one.

May they continue….

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happy birthday to me…

Posted on May 14, 2011 by carla
d1 by mainlineclicks
d1, a photo by mainlineclicks on Flickr.

So maybe this year my birthday is just more awesome – truthfully the best ever…. or I am more aware of the gifts we have in this world and grateful for the love I feel around me.

The weekend started with dinner with a really special man and friends and we heard Danielia Cotton perform. She is one of my favorite performers and her lyrics talk to you. Plus you have to love a female performers who can not only do Billie Holliday justice but at the drop of a hat belt out AC/DC and a little Prince.  If you have never listened to her, I suggest you do so.  She is awesome.

Danielia sang me happy birthday which was super cool and one of those very funny moments in life that are just cool, and we hung out with her a little bit after the show – met her aunt and her mom, who are both wonderful women.

I thought at one point last night if I could just bottle a few of those moments.

It was a perfect night and way to start off birthday fest.

I am content and I am happy.  Can’t ask for more than that…

Life is good.

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happy is a state of mind I choose

Posted on May 13, 2011 by carla

I know some people think I am bit nutty because how can I say I am happy when I have breast cancer.

Ok look, maybe every single day I won’t be happy, and some days I will be scared, but you know what people? We’re a long time dead.  I am alive.

Yesterday in the middle of everything else I witnessed a rear ender fender bender behind me a couple of hours before I saw my surgeon.  Someone was looking out for me, I was not part of the accident chain, but I did stay and was a witness for the young woman who was behind me at that traffic light because I knew she was already stopped, and well, once upon a time I was rear-ended and  although people saw me get rammed, no one stopped for me.  So I decided to pay it forward.   It never hurts.

I heard from another old friend today who has her 2nd anniversary of being breast cancer free coming up.   She is a nurse by trade, so talking to her is terrific.  She did a mammosite instead of traditional radiation, and it sounds interesting, so I am going to ask about that Monday morning.  She told me about what taking tamoxifen does and that some of the most obvious side effects ebb over time as your body adjusts.

So yes, today I am happy.  I have all of you and I have a plan and I can see forward a little bit.

And my surgeon’s office called me back and my office pal there was laughing at me and told me to take the weekend off and give my head a rest…LOL, I haven’t been that bad. Damn, they did not know me during the eminent domain days when I was really extra special…

But yes, people out there, including other of the pink sisterhood whom I have been connecting with and who have been discovering this blog – I am choosing to be happy.  I won’t be that way every day or I would be some crazy sort of Stepford wife, but I am choosing that as a goal.  After all, the mental outlook is half of tackling anything.

Walk on people…it’s spring, the season of rebirth and renewal.

Be happy and pay it forward.

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reminding myself to learn patience

Posted on May 13, 2011 by carla

Some days patience is a virtue I have a hard time discovering….and today? The word of the morning thus far is irritation.   And it’s probably just in my head because I have things to do….but….let’s start at the beginning (and yes it is like I have had may daily cup of French Press but in truth I have not yet)

Anyone who knows me knows I do not let dust grow under my feet – I like to get things done.

So yes, I was first call to my surgeon’s office this morning, but hell, she gave me the date yesterday she could cut the lump out and I want that set in stone.  I also want them to fight for me to get my radiation treatments scheduled closer to me because I am not a lady who lunches, I have to work and am self-supporting.  Six weeks of chemo, five days a week at a site not close to my office might prove to be financial hardship.

When I called the office the voice on the other end of the phone was well,  irritated.  “We just walked in the door, we have no idea what you are talking about.  Our scheduler is not in. We’ll call you back”

Ok, I am trying to be patient and say to myself  they just walked in the door, etc., but on the other hand,  while this is normal to them, there is nothing normal about this to me and I am the breast cancer patient and a new one at that.   I also know that I do have to be my own best advocate and continue being proactive.   I need that for me to survive.

Maybe these office people aren’t necessarily going to love me, I hope they at least like me…but the fact of the matter is while breast cancer is every day at the office on the job for them, there is nothing normal for me about this.  I am like a rabbit with the carrot, dog with the bone: I want that damn appointment she mentioned to me yesterday.  I want to get approved for radiation treatments that are closer to home so I can work and not spend oodles of money on gas or on germ filled Septa trains day in and day out.  After all check out the photo from traffic hell yesterday just getting there…

Good lord people, I have a plan…work with me here.

Ok now that THAT is out of my system, day one of life has begun now that I have a plan…now if I could just get the stuff scheduled today I want to get scheduled today.  I know, I know— there are a bunch of you laughing out there right now at me because patience some days is a virtue I have yet to discover.  Please give a girl a break.  I want this lump out …

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breathe….just breathe

Posted on May 12, 2011 by carla

I can breathe….1 lump 3.5 to 4 cm stage 2 – lumpectomy , maybe node removal depending on what sentinel node shows surgery day.  Tamoxifen   for five years.  I don’t know if I am thrilled about reading the list of side effects however – but what drug doesn’t have a huge list of side effects?

Radiation for 6 weeks, five days a week .

God gave me my birthday present.

I love all of you and these are happy tears of relief flowing down my face.

That  is all for now — I am exhausted.

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