Crap

Good news/bad news day.  After having the IUD out, I got retested and am not in menopause but peri-menopausal.  Grate (my nerves)!  Unfortunately, that means I need to take tamoxifen which reacts poorly with my ssri, Cymbalta.  Cymbalta is the ONLY ssri that works for me.  Others have given me worlds of troubles including colitis, the crazy, total lack of sex drive/ability to achieve orgasm (sorry fellas), the CRAZY, the shakes and just plain not working.  I am going in to talk about all this, but frankly.  I am freaked right the fuck out.

On Being Human

Reprinted with Permission by http://yo-loves.tumblr.com/

As much as we want to pretend otherwise, the human experience is not a pretty thing. In our modern culture we are bombarded with images depicting the human ideal as a goal for each of us to attain. According to these images we should each resemble Kim Kardashian more than, well, anybody in the Honey Boo Boo household. (This is despite the fact that Honey Boo Boo’s family seems to have far healthier relationships with one another.) Our culture tells us that we should be airbrushed and pristine at all times and keep the gore of life tucked neatly away so as not to make other people uncomfortable.

But, let’s be real, life is messy. I do believe that we are all spiritual beings having a human experience. A big part of having a human experience is being tethered to this gross physical sack of blood, bones, pus, and ooze. This ‘sack’ is what defines the human experience in that it both affects the being of our soul and is prone to breaking down. Our bodily instinct of self preservation makes it only natural that we would feel uncomfortable with this. However, embracing the break down is an integral part of really living a human life.

When I recently injured myself, one of the hardest things to deal with was the response from the other members from my yoga teacher training group. It was painful because there was no response. Despite the fact that they all knew multiple ways to get in touch with me, no one reached out to see how I was doing for some time. I felt like a broken toy that had been tossed aside because it didn’t work anymore. In talking to my close friends I discovered that my experience was far more common than I would have thought. One good friend told me how her sister was dumped by a group of women that she had trained for multiple triathlons with after an injury put her on the sidelines. Another friend, a young woman who grapples with a sometimes debilitating disorder, told me about a time when she felt rejected and objectified due to bodily break down. She had just been released from the hospital and was at Whole Foods buying some much needed groceries. While struggling to do her normal shopping from a wheelchair another shopper stopped to open gawk at her straining to reach the asparagus. My friend described the woman as a typical health conscious person: she appeared to have just come from a yoga or gym class and was buying healthy foods, all in a vain attempt to ward off illness and death. I’m sure this stranger was a perfectly compassionate and kind person, but it would seem that coming face to face with the reality that my friend sometimes has to live was enough to pop her out of her comfortable bubble.

And, sadly, I have to point the finger at myself as well. I’ll be honest, there’s something about people with tubes coming out of them that just scares me. As an elementary school child, we had “adopted grandparents” that we would visit in the nursing home once a week. All the other kids thought it was great, I thought it was terrifying. All those old people tied up to machines with various wires and tubes, I was only 8 years old and didn’t know what to do. I truly believe that removing ourselves from injury and disease is an innate defense mechanism build into our bodies. However, as we mature we become masters of our responses to the world and need to learn to respond with compassion as opposed to fear. One day each and every one of us will have the opportunity be in the position to watch our bodies fail us.

I know a brave woman, who is challenging her friends and family on this ground. This woman recently was diagnosed with breast cancer and underwent surgery this past Thanksgiving. Upon logging into my Facebook the other day, I was greeted with a photograph of blood. Her blood. Apparently there was a slight malfunction with her port and a bit of her blood ended up spilling to the floor. Did she freak out? I don’t know, I wasn’t there, but I don’t think so. I do know that she made a dash for every camera in the house in order to document her humanity. And then, did she keep it quietly to herself, sweeping reality under the rug and putting on a painted smile? Not a chance, she posted that right up on her Facebook page for all to see. She gave her loved ones a gift, the opportunity to examine their own discomfort. I have to admit, that move made her a little bit of a hero to me.

It is difficult enough to understand the truth that our authentic self lies in our spiritual being. The fact that we are tethered to this physical vehicle for duration of our human experience makes it exceptionally difficult. We must perform the balancing act of both remember our spiritual truths as well as fully engage with the human experience. Is it possible to be conscious of both aspects of our being? I think so. Being sick or injured opens new doors in that it allows us to experience this life in a completely different way. Instead of shunning others when they don’t feel well, or feeling anger at your own body when it seems to betray you, try instead turning to it with compassion and look for the lessons that are to be found in this embodied experience. Clearly this is something that we are all meant to learn. As Krishna so aptly reminded Arjuna in the Bhagavad Gita: the only way to avoid death is to avoid birth.

Check out some of my girls at:

http://lynsiemae.wordpress.com/

http://corakickingcancersass.blogspot.com

And then there was blood.....

We had a small malfunction with my port today.  There was blood on the floor.  Sort of a pretty pattern.  Blood doesn't really bother me. But it reminded me how messy life is.

Today is also the day that 26 people, mostly very young children were killed.  I had planned to write a very long and angry post about this.  But I can't.

Mostly I just cry.

Never forget

I just said to myself, "Well, now that I am a non-drinker, we can save money for those more expensive trips...."

Woah.  I am or was a pretty hard core drinker.  (1/2 pint a night of brandy or a bottle of white wine.)  I don't even want to be a full time non-drinker.  I don't expect to be.  But the fact that my mind is wrapping itself around that thought is pretty amazing.

I was talking to my sister in law the other day.  She had a mastectomy last year.  Had a scary infection.  Just a really bad time.  She said she lost 20lbs when she was fighting but has gained it all back.

I need to make this clear to anyone reading this blog.  I need to make this loud and clear if you are currently fighting your own cancer.  When you get better, the fight does not end.  Let me say that again:

YOU CAN NEVER STOP FIGHTING YOUR CANCER.  EVER.

Congratulations, you need to watch your eating, your alcohol use, your exercise, your environment, FOR EVER.

Failure to do this WILL result in your remission being shorter than it could be.  So if you want to just forget this little episode, when you once had cancer, remember this post.  Remember this, when your doctor says you have cancer again.

(This post is as much for me as for you.)

NEVER FORGET.

Not unlike childbirth

...you may forget most of this.  It's been less than 11 days and little things are dropping off my memory.  I really have to get the updates done before they are gone.

Itchy.

Long Night

Started yesterday with a Doctor's appointment.  I was scolded well for not "resting".  I hate resting.  I had been on the (desk top) computer too many hours the day before, got in a lot of pain, swelled, freaked right the fuck out.

I'm fine. Just back from the surgeon.  Everything looks good to her.  Next up is oncology.

Still tired.  But honestly, doing well.

Tears, again.

I had intended to catch up on this journal this morning but slept until 11:15 after an evening with fighting with Jack (14) until we were both exhausted.  I know I am not the best parent.  I didn't have a very good example.  I am boggled  by some of his behaviors and don't have much in my wheel house to correct them.  So we argue, he pouts until I cry, and we both go to bed angry and frustrated. Derek tries, he really does, but really what do you do about 14 year old boys?  It's as if their common sense has left them and all that is left is "lazy and messy".  Yup.  I suck at being a mom.  I really do.

[Crying while in pain is awesome by the way]

Today I return to the plastic surgeon in charge of the rebuild.  I am still bleeding into the ports, but much much less.  My chest hurts, my bandages itch, I don't feel like eating, sleeping is hard especially when on such a high liquid diet.  I was up three times last night, which is now the norm, but not easy when getting out of bed is still a struggle.

This is not the first day, nor the last I want to give up the fight, to just stand down and let the universe take me.  I am lazy and messy.

by ~aphostol on Deviant Art

Support is made from love.

Be love.

Shut your pie hole, Cora

Couldn't keep my big yap closed. So tomorrow I get another ultrasound and possible deep tissue biopsy. Because I have to know everything about everything. GAH


They were just going to take lymph nodes out of the one breast, but when we changed plans the MRI indicated that I needed another ultrasound and possibly biopsies on that side. I thought that was moot, but it actually is important since the cancer on the left in in the nodes. So if the cancer is in the nodes on the right, they have to come out too....which would not have happened had I not asked.

I am both an idiot and a genius.  

7 Days to go.

Appointment with the cancer surgeon today.  I think it's my last pre-op.  Still haven't talked to the anesthesiologist.  That person worries me most.  I keep thinking about the loss of my breasts and I just don't care.  Anything is better than constant worry about the cancer getting out of hand and spreading all over my body.

My dreams are strange recently.  Some understandable.  Water themes due to the vast amount of tea I have been consuming.  Last night bees, which I can only assume is about the cancer cells.  At the end of the dream someone (I don't know who) had redirected the bees into the sun.  They weren't coming after me any more.  There was snow (cold water) and a long bit about my family and anger.  

7 days.  One of which are Thanksgiving, my favorite day.  Friends, food, love.

 by =PixieCold

Nesting

When I was pregnant I began nesting shortly before giving birth.  This was a normal thing that I had heard about on many occasions.  This weekend feels like a nesting weekend.  I want to get things put away properly, tidied up, and scrubbed.  I am sure that part of that has to do with Thanksgiving, though we are having well loved friends over who could care less if the house was clean.

I am assuming this compulsion is something more akin to "putting my affairs in order."

Today, I do not feel as if I might die.  I do however feel peculiar.  Not exactly myself.

I'll leave it at that for now I think.

by LauraZalenga

  

Picture Day

I had my pre-op with the reconstruction lady this week, it was a lot to take in.

I have a red folder full of all the things that will happen, could happen, and things you very much don't want to happen.

Today is picture day.  The photographer I am working with is coming over for our concept and before pictures.  I have high hopes for this project.  It's keeping me focused on creation (instead of death) I am trying to write text but it all sounds so......poetic.  Dumb.  Sappy.

Or angry.

But it's picture day.  So today I make art.

Cease and Desist

Today is the day I am done.  I am done with alcohol and nicotine until I am pronounced "in remission".  Frankly, I can't imagine smoking again unless Derek dies before me.  I have reduced the booze over the last few week and have decided to make mimosa's for my final adult beverage.

It suits me.

I am fortunate to have a very supportive spouse who will be tea-totaling with me.  I am fortunate to have friends who will stand by me in the next two weeks and help be not go insanier.  I am so freaking lucky they caught this cancer early and I have had time to think about the choices I have made, the doctors I trust, and the belief that they will "fix this", and after a time of struggle and perseverance I will be fine. Better than fine.  I will be new, and renewed.  Clear headed and stronger.

Thank you for your support.  Raise a glass of something for me.

Get this shot at Cutcaster.com

Insurance

It looks like my insurance doesn't want to pay for my BRACA test ($2700) and sent me another letter saying that it may not pay for reconstruction.  (Even though the law currently says they must pay for reconstruction after a mastectomy.)

Awesome.
Fuck.

Pin Cushion

After playing pin cushion on Wednesday I have my pre-op appointment with the plastic surgeon next week.  I will also be starting the photo project.  Which is good.

This week was a struggle.  My back/hip has been out and hurting.

I imaging I am becoming accustomed to the word Cancer.  I have been working very hard at removing the potential for death from the concept of Cancer.  My sister-in-law, who had a mastectomy last year, said something like, "We all have it in our bodies, it's just there, so why worry about it?"

We have the technology.  We can rebuild you.  I sing mantra's to myself before falling to sleep.
"I am healthy, and strong, and centered.  My family is safe, secure, and supportive.  I have a positive mental attitude."

Denial

I talked to my mother in law last night. She wondered how we got from Lumpectomy and Radiation to mastectomy, reconstruction, and possible chemotherapy. She said this is all "very dramatic". 
Yes. Cancer is dramatic. 
Yes. Evidently, much of my family, and possibly, in part, my husband are in denial. 

Being "strong" and "handling things" does not make cancer less scary, serious, or dramatic.

Denial

by:  moviegirl78

Meltdown #4

This is lonely business.  Even more so when husband doesn't make time to go to the doctor with you. Hopefully we discussed/cried this out so I will not be quite alone, or at least not by myself.

Second choice plastic surgeon appointment today.  I hope my car gets fixed soon.  (So I can run away and join the circus.)

Watching the weather.

LOL

Walking around with an estimation of my future boobs made of rice in panty hose.  I am bouncy, and frankly a lot more symmetrical and balanced.  Still have to call the back doctor to find out how much boob my back will take.

Still having moments of abject fear.

The fact that there is brisket in the crock pot and that we moved the living room around today actually helps.

Crossed fingers

Now I wait to hear from the plastic surgeon.  I wait to hear if I have the "bad genes".  I wait to get the new surgery date.  I wait to find out if I will need chemo.

I am a worry master, but a patience novice.  I am working on that.

by ~xXxNewCultQueenX

Logic wins.

We decided on the total mastectomy, and reconstruction.
Yeah!!! New boobs.  Boo!!! No nipples.
That's gonna be weird.

So I have decided to do a huge chest tattoo and make pretty art and appropriate sized circle shapes where the nipples would be.  From I understand, I can get little "bumps" put in to act like nipples.  It's not the same, but it's something.

Currently I am looking for a photographer to follow me through this process.  Have a couple people who I have reached out to.  I am going to write a book, with lots of pictures, mine and theirs.

I will come out of this a different person.  I will come out of this more beautiful and focused and healthy.  (lather, rinse, repeat.)

Here is the concept for my tattoo:

   How Koi Become Dragons

By: Koiponder

Written on July 29th, 2009

In the wild, koi are cold water fish who gain strength by swimming against currents. It seems they have captured the imagination of fish fanciers for centuries.   Many years ago, in a time before recorded history, a huge school containing thousands of koi swam up the Yellow River. The colors of their well muscled bodies flashed in the sunlight making them seem like a million living jewels. All was going well until the koi reached a waterfall. Immediately, a large number of them grew discouraged and turned back, finding it much easier to simply go with the flow of the river.   Yet, a determined group of 360 koi stayed on. Straining and leaping, each koi strove to reach the top of the falls. Again and again they flung their bodies into the air only to fall back into the water. All this splashing noise drew the attention of the local demons who laughed at the efforts of the struggling koi. Adding to their misery, the demons sadistically increased the height of the falls. Still the koi refused give up!   Undeterred, the koi continued their efforts for one hundred years. At last, with one heroic leap, a single koi reached the top of the falls. The God’s smiled down in approval and transformed the exhausted koi into a shining golden dragon. He joyfully spends his days chasing pearls of wisdom across the skies of the vast and eternal heavens. Whenever another koi finds the strength and courage to leap up the falls, he or she too becomes a heavenly dragon.   The falls have become know as the Dragon’s Gate and, because of their endurance and perseverance, koi have become symbolic of overcoming adversity and fulfilling one’s destiny. 

http://browse.deviantart.com/?q=celestial+dragon&offset=120#/d3a9e91

New Information

Went to see my gp today to get the hysterectomy planning going.  Not going to let my lady parts to sneak up on me.  Their sneaky, those lady parts.

Next up time for a little work and a sandwich.  Unfortunately, my car died where I had lunch.  Had to get the other car, return D to home, and fly to Dr. 2, the radiologist.  I liked absolutely NOTHING he had to say.  I understand they have to tell you everything, and some of it was unpleasant, but given thought, the radiology they were planning for me sounded crazy.  Actually radiology in general seems crazy.  Radiation on the breast with a small plate over my heart sounds like something I don't want to do.

Drive from there to where my car broke and called the worlds stupidest tow truck people.  Why don't people understand time?  25 min. is not equal to 10 min.  The fact that they took 1.5 hours to get my car up on the trailer boggles my mind.

I left them to it and went to Dr. B, my surgeon.  I was informed that there was something unpleasant and tricky in my right breast.  That pretty much sealed the deal.  The difference between plan A:  Lumpectomy and hard core radiation and plan B:  total mastectomy is this:

Plan A gives me a chance of getting another cancer within 10 years.  A 10-15% chance.
Plan B gives me a chance of getting another cancer within the next ten years of 3%

It seems pretty logical to go with Plan B.  Yes, it's more invasive and involved.  But we had a second to think about it.  I was originally supposed to have surgery on Thursday, but one of the doctors couldn't make it.  Now I have time to think.

Big day.

Tomorrow is a big day. Primary care doc. and referral to an OB for Hysterectomy, followed by radiologist, followed by surgeon. In between, I think I will do some thrifting and take some fall pictures here and there. 

Hoping that I don't have the "bad" gene.  Hoping beyond hope that I don't need chemo.  

No chemo, no chemo, no chemo, no chemo, no chemo, no chemo.

Better

Better mood this morning.  I am up because I have a ticket to see the President of the United States on Wednesday, the day before my surgery.  

This week is going to be a bitch, but there are some bright bits.  

A dark mood

Because I could not stop for Death,
He kindly stopped for me;
The carriage held but just ourselves
And Immortality.

We slowly drove, he knew no haste,
And I had put away
My labor, and my leisure too,
For his civility.

We passed the school, where children strove
At recess, in the ring;
We passed the fields of gazing grain,
We passed the setting sun.

Or rather, he passed us;
The dews grew quivering and chill,
For only gossamer my gown,
My tippet only tulle.

We paused before a house that seemed
A swelling of the ground;
The roof was scarcely visible,
The cornice but a mound.

Since then 'tis centuries, and yet each
Feels shorter than the day
I first surmised the horses' heads
Were toward eternity.

-Emily Dickenson

Punishment

What stage of grief is this?  I woke this morning teary.  I have thought to myself, "You have been missing it.  This is your punishment."  My punishment for not participating in my life.  My punishment for being afraid of everything.  My punishment for my self imposed isolation.

Bucket List

I feel like I need a bucket list.  I have always been good at making lists.  I am also very good at wishing, but you have to be careful about what you wish for.  I have been wishing for a more fit body, a thin body, bigger boobs, for as long as I can remember.  I forgot to "wish" that these things wouldn't come to me through the cancer.

So today I have been thinking of things I want for my son, for Derek.  Places I would like to see, and people I deeply want to spend time with.  Things I would like to surround myself with.  Things I would like to achieve.

And instead of just wanting and thinking, but actually making plans, and thinking of ways to make things happen.  Step by step ways, so I don't fall into the "be careful what you wish for" trap.  My personal genie in the bottle has a sick sense of humor.

I will be doing a photo journal for this experience, this cancer.  I need to do this.  So soon, my pictures will be here too.

MRI

Thank God for Kimiko for picking up Jack for the haunt. Derek is still loopy, and I just got back from the MRI. Felt like it was going to shake my teeth right out of my mouth. I touched my fingers together at one point and felt lit up by electricity, like putting a butter knife in an electrical socket.  I counted out 30 min. but the young MRI tech promised it was less.  He was a liar, but trying.  I don't like laying on my stomach much.  Looking at the pictures of my breasts I wondered why men like this view so much.  They seem so awkward and misshapen hanging down that way.  But maybe larger too.  I don't know.

At this point I don't care.  

It's fall.  It's been 5 weeks since the mammogram that found the cancer.  The cancer.  Not my cancer.  It's an unwanted guest, destined to be evicted with great alacrity and prejudice.

Today's little slice of horror.

45 min. worth.  And I have metal in my neck that will constantly be pulled at.  Fun!

I am not the cancer.  I am however my complete annoyance at having the cancer.

Diagnosis Part 2

I have Grade One Stage One Invasive Ductile Carcinoma that is Estrogen receptor positive.

So.  MRI on Friday (Tomorrow), Surgery next week.  (Hopefully).  I am in a research study for a one shot Radiation treatment during my lumpectomy.  They will also be doing a touch prep gross evaluation while I am asleep.

Hopefully, that will be all I need unless tests come back indicating I need Chemo.  I will be on Tamoxifen for a very long time (possibly forever.).

I have to start thinking about if I want to keep my lady parts.  Regardless of the Tamoxifen.

I can still have coffee and a drink if I would like!!!  (for the time being.)


That's all I got for now.

Cry me a river

Felt more like crying a river than river walking.  Only made it through about 20 min of water walking class this morning.  Walked as stoically as possible to the locker room and cried for 20 more.

Probably just over tired.

Health history

Must do current and past health history today.  Surgeon tomorrow.  Did not sleep last night.

Dreamed of an old lover.

My Dentist Sent Me Flowers

I love the people at my dental office.  I went in to check on when my last work was and I told them I had cancer.  The cancer.

I don't have time for cancer.  I had time to stop in and tell them though.  I tell everyone.  It's like being pregnant, only in a negative way.  People respond the same way.  "OH WOW, how do you feel?" Just like when I was pregnant.

Tired

Tired, almost to the point of falling over.  Always at 2:30p.

Foot hurts.  Tomorrow will be better.  Seeing Judy for Lunch and Acupuncture (probably with a short nap wrapped in.)

No smokes today.  So far not a single puff.  Sinking.

Things to ask, after you ask "Am I Going to Die Soon"

Note to Self:

Fill out your 5 wishes.
Ask for referral to cancer nutritionist.
Ask for referral to cancer support group.

Notes for Doctor:

Make sure LabCorp Only

Can I take Vit. D and Vit. C?
How about milk thistle?

Any foods to avoid?  Coffee?  Booze?

Birth control?

Blood markers for metastasis?

For Surgeon:

Ask about a frozen -section biopsy.
Make sure about clean margins.
Be sure to express that I don't care about scaring, maiming,  dimples.  Get it, and get it all.
Tell her about fast metabolism of pain killers and anesthesia 
How long until results are ready?
How will we know if it has metastatic qualities?
What further tests are needed?
Is it estrogen and/or progesterone receptor positive?
Testing for the C in lymph (sentinel node?), lungs, liver, etc.?
Surgical options - lumpectomy, mastectomy?
When will I go to oncology?


For oncology:

Port in chest?





 

Diagnosis

I had some biopsies last week.  It's Breast Cancer Awareness month and I did my mammogram because I found some lumps.  They are usually nothing, but this time, I wasn't so lucky. 

I got my diagnosis this Tuesday.  It hit me kind of like a mac truck.  First I told my husband.  Then called my boss, because I am practical like that.  Next Facebook, because you have to tell your friends and that's the quickest way to spread news:

October 9th:

So yeah, I have cancer. Hopefully they will be able to just cut it all out.  

The good thing about being a Professional Pessimist(tm) is you are not overly shocked. (Actually, I think I might be in shock.) Don't you worry (but please keep me in your thoughts), I will beat this minor disturbance in my cellar structure. I am going to miss coffee and booze and cloves, but those are probably the things that lead to this. 

Love you all. Mean it.

Later I went to lunch with very good friends.  That was good.

So far, all I know is this:  

I have G1 tumors that are ductile and local.  They are in a centinal node.  

Appointment with the surgeon on Thursday.  So far I have purchased and am reading 2 books.

A Survivor's Guide to Kicking Cancer's Ass and a book about whole foods for cancer.

------------------------------------------

That's all I've got so far.  My body hurts, I am tired from lack of sleep, by boob still hurts from biopsy (1/4th of my breast turned black and blue.)  I'm pissed.  I need to quit smoking, coffee, and booze all at the same fucking time, and I am pissed.  

Onward into the void.

Squish

This is the first day.  This is the day I went into get squished.  I had found a couple lumps in my right breast.  Just lumpy, bumpy, fibrosis shit, I thought.  But I didn't like the way the doctor was talking, didn't like her language.

"The right one, that looks fine, just fibroid lumps.  But this left one.  I don't like this one.  See these dots, all in a row.  Nature doesn't do that.  I don't like that.  Let's take a look and make a plan."

I got the "close up" mammogram.   

......let's take a look and make a plan.  NOT lets make a plan to take a look.

I think she knew I had cancer that day.  I think I knew I had cancer that day.

We made a plan to do biopsies.  Biopsies.  Four on one side, one on the "questionable side".

We made a plan to take a look.