too much information running through my brain….

Yep, as I am walking out of the first appointment with my new oncologist, the Police song “Too Much Information” started…you got it, running through my brain.

My friend Linda took me and was my ears…she is awesome.  She was like a big sister to me in high school and back in the day I felt really cool when I got a ride to school with her in her Corvair.

Upon our arrival the waiting room was packed with all ages and stages of life…with cancer and waiting with those who had cancer.  One woman had a gaggle of pals with her like her own personal cheerleading squad and I found that awesome.

So first up was a new nurse to take my vitals.  Really nice woman but she did not ask me what side I was cut on and when she put the BP cuff on my left arm and it started to pump up the volume I thought I was going to hit the ceiling.  So she switched to my right arm and much as I expected after the week I have had and a combination of nerves being jangly for this first appointment and four hours of sleep due mostly to the fact that we had wicked thunderstorms well… my blood pressure was high.

So after waiting a bit my new oncologist came into the exam room.  Very nice, cute, and an awesome smile along with bright, calm and informative — I like him.

We went through all the fun stuff and well…I don’t think he was ready for me.  I might have been a little too zippy, but I was just wired by the time we started talking.

We went over chemo if I need it – it would be four shots three weeks apart, then radiation and tamoxifen. Ok people rub your buddha and dog and cat bellies, I don’t want to lose my hair.

The side effects from all of this crap can just suck no way around it.  But I want to git r’ done, people.

Anther milestone appointment down, another week towards completion finished.

Love all of you and thanks for listening.

Zippy out.

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life as a paperwork pushing mynah bird….

Really, who knew one person could do SO much paperwork about the same thing?  So I have been swallowed up by paperwork for my medical oncologist and radiation oncologist.  List meds, list surgeries, are you crazy, have you been pregnant, do you like the color purple, do you wear underwear on Saturdays, who are your doctors, etc, etc. 

And then one form asks me how I feel about all this.  Really???  Maybe I should just give them the link to my blog? Yes I love having breast cancer, I adore it, can’t imagine how else to spend my time. (no I did not answer that way but was sorely tempted to do so).

And then there is the question about my sex life.   That one did give me a fit of the giggles though because you feel as if a teeny tiny Dr. Ruth jump off the page at you.  (Besides, don’t they know nice girls don’t kiss and tell?)

But seriously, all this paperwork is amazing.  And a lot of it is so repetitive.  I wish there was like this universal application.

Tomorrow is a big day. First date with the medical oncologist.  Am taking gal pals as ears to give the man a break.   Maybe I will make a party out of these things a la Samantha Jones and Sex In The City. As a matter of fact, TV or not, I liked the way the series handled this.  The humor helps when you are watching the episodes as a “chosen” one.

You know what really floors me right now?  How many people are reading this blog.  And I have to tell any woman going through this that writing about this helps get it out. If you can’t blog, journal.

So I spoke to a psychologist attached to my breast cancer program today.  I figure it’s part of the perks so to speak, might as well see what she had to say.  She seemed pretty cool and remarked at how I was juggling a lot of things.  I had to laugh because…. gee you think?

I also keep hearing other horror stories of being a woman who has to work while undergoing treatment.  I am not alone in my worries and it is so not right.  When things happen to me, it’s a clap on the back and “yeah team, let’s rally”.  But women? Not so much.  It’s astounding.  Any politicians reading this?  Want to stop offering women in the workplace lip service and actually help us?  Whether we work in a large company or small, you get the big C life changes there too.  We should be reducing our stresses, not adding to them.

And in other news I have two other friends dealing with canceriffic issues…so can we remember them in our prayers and positive thinking?  They are awesome ladies!

A friend wrote to me today:

 
“a friend suggested to me this morning to set aside 15 minutes each day to worry, then to visualize putting the worry away in a box, high up a shelf. I really liked that idea. scheduled worrying!! then get on with life….”
 

I like that idea too!  Now can someone make me do this please….

 She went on to say:

“literally acknowledging the worry, accepting the worry, then letting it go. Otherwise it’s utterly debilitating. I took a class on mindful meditation and it’s the same idea. You don’t deny it it’s there, but trying to allow it to be there, acknowledge it, then literally put it away. The past really is past, and the future is uncertain and out of our control…. and every minute, every second we spend thinking about either robs us of the joy of our right now.”
 

Penn Medicine does this program called Penn Program for Mindfulness – but it is very expensive I think.  And I know how everyone says there is help for paying for all this stuff , but still. I did find an interesting blog about this  topic….And another interesting blog called Komen Watch . What is up with all the Komen criticism?  Have they gone too commercial? Gone too pink rubber bracelets? (I can’t stand those rubber bracelets incidentally)

I did find a fun website today called Pink Kitchen  and I also got to talk to Catie herself from Catie’s Organics/Energy Essentials

My sister got me hooked on her vitamins and supplements – I have a whey shake in the morning  (no soy, no soy milk – usually almond or rice milk or coconut milk) with gluten-free wheat grass, amnio collagen powder, and whatever fruit I have around – berries, bananas, peaches, melon, whatever.  Anyway to that shake I add Catie’s Whole Food Vitamin C Plus  and Catie’s Organic Greens – I sound like an infomercial, but these products and I get along.

Anyway, I did the flake moment when I looked at my calendar and thought “huh, my order should have been here by now”  – so I called the customer service number.  Ends up I never hit “submit”…so I am speaking with this nice lady who suggests I try the Gluten Free Version of The Organic Greens – because it has among other things asparagus in it.  Who knew that asparagus was on the plus list for cancer fighting foods?  I love asparagus too!

So this nice lady is asking me this and that and I said in the order I submitted I am interested in information on stuff they have nutrition-wise that is beneficial to breast cancer  or cancer patients, etc.  Then this lady started quizzing me about my treatment and all of a sudden I realized I was talking to Catie herself.  Sorry but I found that very cool that this business owner would take the time to speak with a small customer like myself.  

And then I found myself talking about recipes with Catie and she liked this new thing I had made up when my friend Sandra gave me a new thing to try in my organic veggie box a week ago: garlic  scapes – they are like young garlic tops for lack of a better description.  Anyway, I   sautéed them with fresh greens  and white beans (navy or kidney whatever was dried in the jar that I soaked) – I think it was two kinds of kale or it might have been kale and collards and some fresh basil, oregano and a little salt and pepper.

Anyway, what a super cool lady and Linda?  She likes Maca too. She has a lot of recipes on the Cure’s in The Kitchen  site.

Today all in all wasn’t bad.  I am discovering I do have inner strength and my soul is stronger than I give myself credit for….that’s all folks…my boob hurts and so does my tail bone where I slipped and bruised it but good….I have things to do so ciao for now.

 
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emotions like a tossed salad.

Wow.  I am doing breast cancer emotions roulette today and I apologize in advance.  I don’t want to be a burden and apologize if I am but today I am a little overwhelmed.  The whole thing – swollen boob, miscellaneous pain, feeling tired physically and emotionally, not feeling attractive every day, work pressure, undefinable life pressure, and so on – I can’t decide today if I am balancing or juggling.

I feel a little like a tossed salad might feel if a tossed salad could feel….

One of my Barbs coincidentally before I spoke to her early this morning   (I have more than one like I have a ream of Karens), had given me what she calls a bible nugget on a 3″x5″ card and I am just going with it:

 

“The Lord is my light and my salvation; Whom shall I fear?  The lord is the strength of my life; Of whom shall I be afraid?” ~ Psalm 27:1

 

Deep breath…inhale…exhale…release…just breathe woman….I am not trying to be a big baby…sorry…I will work through this, just giving advance warning that I might be not-so-tough-girl today….Not feeling negative though…just a little like a tossed salad.

 

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je suis fatiguée

Can I say I am tired of being tired?  I am tired of being tired. I am tired of the swollen boob syndrome and hurting. 

I will get better, but I am tired. 

And I am in a weird mood.  At times  this disease called breast cancer is a lot to take in.  Trying to live a normal life, but on some levels, what is the new normal?

And oh yes, what else?  More reams of paperwork to fill out…for the medical oncologist and the radiation oncologist. 

Balancing life, getting back to life, trying to manage stress and new costs of living.  It’s a lot.  It made me check in with my nurse navigator today.  She is this voice on the other end of the phone who is just calm and normal and soothing.  At least when I talk to her when I have doubts, it makes me feel more normal.   Some days you can still be positive but not feel normal.   After all, being one of the anointed ones with breast cancer can be damn annoying and I still wish this would not be happening to me thank you very much but it is and so I shall deal…whew! Holy run on sentence Bat Girl!

I want the oncotype back already. 

Hey God?  You listening?  Low end of the scale please in the oncotype world of things…

How do people do this?  Am I doing it with the same grace and courage I see in others fighting breast and other cancers ? 

Have any of you read Onco Girl?   You should.  It puts a lot into perspective….

Other new things? All natural deodorants.  Yes, yes….paraben free, aluminum free, and so on.  I am becoming smell obsessed this summer…

I have been trying the Trader Joe’s all natural but I think it’s only so-so.  That being said a couple of my friends have told me about the mineral salt crystal things.  You wet it and put it under your pits basically.  Or you rub it on when you come out of the shower and your skin is wet. So I will try one of those.

News flash: girls don’t like to smell.

Yes, I am still positive. I will fight to remain positive.  I will fight to kick this cancer’s ass with a little help from my friends. (Love you guys!)

Finally?  This journey is a process, people.    That’s for damn sure.

Now back to your regularly scheduled programming…

Nighty, night

 

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a gift from the heart: an angel’s wing

There is this jewelry designer named Megan Steer who lives and designs in New York City.  I was introduced to Megan and her company Lura Jewelry through my friend Janet who created Clover Market.    I do some of the photography for Janet for Clover Market as many of you know, and when I saw Megan’s work, it was love at first pair of earrings. And getting to know Megan, the artist, has been ever so nice as she radiates such amazing energy and kindness. She really is a beautiful person inside and out, and the way she is? Most simply put, it is reflected in her creations in a very cool, sometimes inexplicable way.

Well, I have never missed a Clover Market until my surgery.  The last market was just a couple of days after my surgery so I just couldn’t do it.  Megan sent me a little note after I wasn’t at the last market of the spring season saying she had missed me.  I sent her a note back and told her I was sorry I missed her, and what was up.

I got a box in the mail on Saturday.  It was from Megan with a note that said in part:

“…I’ve told you before that you bring me luck, so I wanted to send you this necklace.  When I carved it I was thinking of an angel’s wing, and the writing on the back is Sanskrit and it means “I am divine love”…I’ve also been donating money from the sale of this necklace to the Breast Cancer Reasearch Foundation.  There is a lot of love, and a lot of healing in this piece and that is why I want you to have it!”

I love the necklace and I am blown away by Megan’s generosity of spirit.  It was exactly what I needed – I have not written since Friday morning and suffice it to say, the pressure from work has taken a toll on my post surgery self.  The stress on Friday caused incredible and surprising pain to my two surgical sites – where the nodes came out and where the lump was excised.   And some swelling too. I know that probably sounds nuts to some of you reading this.  Sorry.  Not trying to freak anyone out.

I did, however, have a great weekend which was very relaxing.  I am a lucky girl at the end of the day. And I feel the love you all send me around me. So one day at a time, yes?

I am a little out of steam and am going to say good night…

I awoke this morning with devout thanksgiving for my friends, the old and the new.
– Ralph Waldo Emerson

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friday morning…

Friday morning…another week done.  Another week with breast cancer, yet an essentially positive one.   This disease is a bitch, however as it makes you question everything… but I am o.k. and with a little help from the almighty, modern medicine, and friends & loved ones I will be fine and remain  fine.

But back to the question everything – breast cancer does do that.  Hand in hand with that, comes how snippets of conversations can affect you now as a breast cancer patient – your awareness is heightened in a sense.  So when you are speaking to someone going through treatment and/or living with the disease  be aware –because even if they get it and they  never deal with radiation or chemo or surgery ever again, I am learning you will always live with the disease – it is part of you forevermore which is why it is so important to handle it well I think.  Maybe that doesn’t make sense, maybe I have not articulated it properly, but there you have it.  Inner peace some moments, even when choosing to deal with this positively is something which can be hard-won.

So this morning my hospital system finally calls me back about the bills. “Well we can only break it out over six months” this faceless voice says to me.  Really, I am thinking?  Well you all better hope you don’t sock me with too many bills.  I find that really, truly aggravating.  I like to pay all my bills, including any credit card balance, off at the end of the month. And I do.   But where are the brownie points for that?  I ask because the first time you ask for help, a little consideration, or a payment plan they act like they are going to give birth to a Hydra if that happens. 

Seriously.   I don’t like asking for that consideration, but I did and they can deal with it.  After all, how many people do they have that just stiff them?

Oh I took a long look at the other incision today where they actually removed the tumor.  The surgeon removed those strips covering it yesterday.  It’s kind of cool.  She basically unzipped my skin above my nipple, following its curves.  So as I heal, the scar will be there, but it will be very neat and mostly unnoticeable. The other mark is not an incision, it was actually a blister that was caused by the strips and adhesive.  And what you see otherwise is the incision  and scar in its early stages (slightly puffy ) – not anything improper.

Life goes on people.  And life is a process….one foot in front of the other.  I am good, people. Smile…

With the new day comes new strength and new thoughts.
– Eleanor Roosevelt

 

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post-surgery update: more to do, more to learn…

Saw my lovely surgeon today – and she is lovely – I really like her and her office staff . 

I am not out of the woods yet so keep the prayers and positive thoughts coming.  That little bastard they yanked out of me goes in for oncotype. I have a stage 2 estrogen-receptor positive cancer- so this test is a crucial key in making sure I treat this the best way possible.

Ah yes… for some of you this is a new thing – it is a cool thing – oncotype is a test which to my limited knowledge basically tests  the tumor and from that they can have a better gauge as to the probability of recurrence and whether or not I will benefit from chemo, or if it will just be radiation and tamoxifen for now.

Depending on where I am on the scale – it comes back as a graph the surgeon said – is whether or not I need chemo.  If I am on the low end, no chemo; if I am on the high end, chemo and radiation.  If I am in the middle, I don’t know. But knock on wood and kiss the rosary beads, because as I have clean margins and no lymph node involvement I am hopefully considered at a lower risk for recurrence, but of course there is no crystal ball – hence why oncotyping is SO amazing a tool.

Oncotype is something the nurse lady from Aetna told me about yesterday when she was asking me if I was having chemo or not.  Yesterday I thought I wasn’t having chemo at all, and now well, I don’t know – will have to cross that bridge when I get to it.  I just sure hope I am not being paranoid and I didn’t flunk some quiz with the insurance company and they won’t try to deny my having it or paying for it – after all I am the new cancer patient not a doctor.

But we are going to think positve thoughts, are we not? 

My sweet man took me to see the surgeon today and I know he was tired and it is Africa hot outside.  He is aces and so are my gal pals.

One of my neighbors brought me over this amazing pasta salad tonight so I did not have to cook.  It is so good.  Not cooking once in a while is indeed a treat.

Today in my surgeon’s office I looked around a very crowded waiting room and except for a couple of women, the majority oozed this vibe that scared the crap out of me.  Maybe that is insensitive because who knows what everyone’s stage of the disease was, but truly a room full of negative oozing women really gives a bad vibe.  I hope I do not ever go to live in my head where some of them obviously were – how sad.

So…one more day of this under my belt!

And a final note and cause for celebration?  I can wear deoderant again!  Yipee!  I think I am going to stick to the quasi organic kind with no aluminum and no parabens for a while just to be safe – besides it will be what I have to use during radiation if they let me use anything at all.

Time for one of my favorite positive affirmations:

I choose love, joy and freedom, open my heart and allow wonderful things to flow into my life.

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dancing dollars and other tales

Hmmm my blog must be getting some reads because spammers have discovered me.  Hey spammers? Truly, you don’t want to mess with a woman with breast cancer.

Yesterday was o.k. except I am tired and I still hurt  and my left hand, mostly the fingers got a little swollen until I rested my arm.  My left underarm in addition to being smelly most of the time just seems to feel dry and odd – I think it’s because I am not using deoderant or anything.

Did I mention I have Aetna for health insurance?  I found out yesterday that they do not cover the creams that cost on average $85 and up that help your breast get through radiation.  Xclair, Biosane (sp?), Radiacare…all not covered.  I hear people talking about “My Girls” but that is also kind of pricey.  One that is reasonable that most women seem to like is Sween Cream.  It’s all pricey but I have to try something.

Money, money, money, it’s only money …isn’t there an old Abba song with those lyrics? YIKES.

Oh and it gets better…go ahead…ask me what radiation will cost me out of pocket every week for six weeks?  Ask… ok give up?  $250 per week.  And the breast MRI? The co-pay is $250.

Guess what? These people can put me on a payment plan.  I have to live. I am not made of money and this is starting to bother me.  Women have to worry about SOOO much when dealing with breast cancer.  Truly, it’s not fair and it needs to change.  We don’t ask for this disease after all.

I am seeing dancing dollar signs…can-can gals.

Oh part of my benefits means I get a nurse from the Breast Program from Aetna.  She’s really nice.  Wish I wasn’t so suspicious of insurance companies even if these are benefits I pay for – I think it’s left over from my Keystone years. 

I wonder if I can start using deodorant on my left pit soon.  I found an all natural no aluminum no paraben or whatever deodorant from Trader Joe’s.

Oh and I spoke to the nutritionist that came to me through my hospital’s breast cancer program – I need to know what I can take and can’t take during radiation and what I have to cut out permanently – soy is the no brainer.  But she said something about flax seed? And maybe evening primrose oil?   I did not take them too long so I am not particularly attached to them .  But she had never heard of Maca root.  Maca root kills hot flashes.

But ahhh yes, from Memorial Sloan Kettering:

What are phytoestrogens?
These are herbs that have estrogen-like activities. A few popular examples include soy, red clover, flaxseed, and dong quai.

 

Now Maca doesn’t have a bad write-up on Memorial Sloan Kettering’s site…hmmmm…but   evening primrose oil? No more of that.

No more flax for me either…But seriously?  The Herb Info section from Memorial Sloan Kettering is helpful

It’s hot and I have a headache…but I will think positively.  It’s as hot as hell out though….

You must do the things you think you cannot do.
– Eleanor Roosevelt

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life goes on…

I thought I would post something NOT having to do with breast cancer today – earlier when I took the beasts out (gingerly and with my other arm), I looked down on our sidewalk and went “ewwwww”.  Apparently the ‘hood is lover’s lane again…I would say I am glad they are being safe, but really why do they leave things like this on a public street?  All in all given the snotty rep of the area in which we live, this reminder of we’re all human while really gross is damn amusing….

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what a day…

Might I say I am amazed at the crazy kaleidoscope of bruising on my boob?  And it hurts.  It still looks like it is healing o.k. but I am sore.

And boy am I tired.  I think I did too much today. 

My friend took me to Trader Joe’s this morning before work (yes I went to the office, more on that later).  I hadn’t been to any grocery store in a coon’s age and needed staples and some easy prepare stuff since I have to go easy on the left arm and the rest of me.  I was even down to my last roll of toilet paper. 

So yes I got some healthy stuff and not anything with any plant-based estrogens.  I was in a cold sweat by the time I got back from that. Wow.

Then I figured I had better go into the office physically – not just work remotely.   I must have looked awful when I arrived because my co-workers basically intimated I looked like death warmed over (truthfully? I felt like it too).  One girl in my office left me a very sweet get well soon card, but I never saw my boss as he was out-of-town.  I have not heard from him since I went in for surgery – not even an e-mail to see how I made out.    Whatever.  I left a few hours later because I started to feel dizzy.

I came home (no, I did not drive) and was soaked in sweat – it’s hot and I am still exhausted is what I have to admit to myself.  I just got up again after lying down for a while.

I listened to my messages, fed the beasts and one of the ex sisters in law I kept called.  She’s a love and totally cool, it’s not her fault her brother is who he is.

The first funny thing in the conversation was that the ex apparently hid from my mother at Devon Horse Show over Memorial Day.  He had gone there with his other sister  the Harpie from Pennsyltucky.   Had a total giggle over that  and picturing him the horse’s ass hiding behind some horse’s ass so my mother didn’t lay eyes on him.  However, had she seen him I would have loved a front row seat and popcorn. 

Apparently now in addition, the ex-factor  knows I have breast cancer.  I don’t care.  And in between his typical usual obsessions which aren’t worth air time he says “well she dodged a bullet”.

Gee, ya think?  But that is the second bullet since technically  the first bullet dodged was him and being freed from him.

Then he gave my ex SIL  the bum’s rush – probably so he could get off the phone and run and burn up the wires by calling the Harpie from Pennsyltucky, who will in turn burn up the wires.  It’s the way it works in that family – there is no greater joy than dissecting someone else’s issues.  And I am sure by the time he recounted the story it was HE who dodged the bullet because he didn’t have to deal with a woman with breast cancer. 

I also saw two of the breast cancer survivor women I know today.  They are both amazing women and it’s nice I don’t have to dissect all of this with them because they get it, they have been there.  One said to me something I have heard from the survivors I find the most adjusted to life after breast cancer:  that they did not really go to support groups because the women they met  when they tried them out were so negative and so dwelling on the awfulness of life they couldn’t handle it.  And I have heard this from a LOT of breast cancer survivors. They all tell me they love the information that the breast cancer non-profits have, but have found the support groups  have been the Alpha Sigma Depressed of it all.  That’s a shame.

I still think I am coping pretty well emotionally.  My largest issue is making myself realize I did have a big deal surgery and I have to rest and take it easy.  Given the onset of the heat wave this week around here, I can tell you I will do it.  I also have a follow-up with my surgeon later this week.

My stitches hurt a bit this evening.  I think I need to lie down again.  I also really hate having half a smelly body in the summer.

What else? A friend of mine gifted me a few comfy camis for when I start radiation.   And another friend of a friend who is a breast cancer survivor sent a pin to me that had been prayed over to mark my getting through this initial stage with the surgery.  It marks my moving forward and looking ahead.  And I am.  I have a lot to look forward to.

One last interesting thing worth a mention today?  Some of my friends whom I have supported in the past when dealing with various life issues that I would have expected to have done at least the occasional sanity check on me with this?  I haven’t heard from them at all.   I am not keeping mental book on it because when you support a friend you don’t do it for future paybacks, merely because you care, but from a sociological perspective it is interesting.

Hope you all had good days.

Life is not about waiting for the storms to pass…
It’s about learning how to dance in the rain.
– Vivian Greene

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