Chemo-Grigio

I saw that in someone's blog a while back... thought it was funny, she just didn't want to leave it at "chemo." When I googled it to see if anyone else used that term before, several Pinot Grigio ads also came up, and one was by Ramona Singer the RAMONA being in huge letters-

Thought it a little amusing, also thought it auspicious enough to use it.  My mind works very loosely that way.

I wanted to close the year with this breast cancer battle as having been very hard to date, but not so hard I can't continue.  I'm hoping the worst of it is over.  And there was the little flub with my managed care company approving one drug and not the other.  Managed Care... what are you going to do?  I did sign up for the case management program within my insurance carrier so I'll be on the phone with them Monday.  Since July I've had to wait days and days for all my procedures because of waiting for approval from insurance.  That is so wrong.

I've learned a little more about myself this year and also that I truly have the love of my life (did I mention I got the most gorgeous (to me) vintage Art Deco diamond ring from my fella for Christmas?  Yeah, that's what I sayin' baby!  He's the best!).  He is a most incredible person and I could not be more grateful for him.  

I had all these great intentions of eating organically but it got to down to what I could stand, and what I could get down with the least amount of problems.  We adjust right?  I'm way good with non-rigidity... even though it meant deviating from the plan.

I am also way into foods right now with high iron to boost my anemia.  This has been a horrible side affect of chemo and compounds the fatigue and inability to catch ones breath just walking across a room or down a hall.  I'm thinking this next round of chemo doesn't have the same affect.  Thank goodness!  I still have a year of chemo, then go to radiation, then another surgery.  It WILL end someday.  I want to carry this out with grace and be not just a survivor but a THRIVER!

I'm simplifying my life in little ways, think this will help in more ways than I can imagine.  

Peace out, and thank you's to all my Facebook friends who's flowers, well wishes, support, understanding and everything else has meant a lot to me.  I don't have a huge family so it makes up for a lot.  It is most appreciated and I love my FB timeline papered with those funny kitty photos and flowers. 

Trudie & Trevor- I don't know if we have the most dysfunctional family on the planet, I'm sure not, but we three survived what we had to endure and frankly, we did okay!  Yes, there could be improvement but... we're okay!  That's enough.  I love you. 

Love to you ALL!

Scenes From a Chemotherapy Suite

Friday's Visit

I took these pics at the end of the day, I'm here for over 4 hours so most folks are gone the last hour or so that I'm here.

This is what's over my head and fascinates me because you probably can't see it but there are fine hairy tendrils on the bottom of the petals... no surprise I think of cat fur.

Locked into the port!

This is the Chemo Suite

Directly in front of me, yes my feet.

Caught off guard!

...but he's so cute he gets another shot!

Puzzle we're working on, I love these because they're new every time you do one! Matching up the heads and hinnies!

The juice... that I'm almost to the finish line with.

Home to the sleeping kitty... he has a cold right now... : (

Had a talk with the doc about some of my symptoms, most seem related to anemia, the shortness of breath, my legs totally giving out on me one night last week.  I don't have quite enough rich red blood cells to carry oxygen to other cells in the body.  Its chemo related and will improve eventually... post chemo.

The Chemotherapy Learning Curve

That's right.  It's straight up.

This blog has been for me, like a diary, and to share for those that wanted to know.   This post really is mostly for me because I need to remember this information and have it ready to pull up when needed... and/or have my friends remind me when needed.  So here goes.

This is a picture of one of the drugs I'm taking, beautiful isn't it?  Beautiful color.  It's Adriamycin.  It's classified as an "antitumor antibiotic."  It's made from natural products produced by "species of the soil fungus Streptomyces."  This drug is the reason I had to take the Echocardiogram; it interferes with the pumping action of the heart.  If that isn't scary enough keep reading.

A tiny bit of background in super simple terms first- cancer cells are typically fast growing, multiplying/dividing cells.  Most chemo drugs target fast growing cells.  Chemo doesn't know the difference between bad cancer cells or normal healthy cells so they disrupt/destroy a lot of normal cells in the process.  Most commonly the affected healthy cells are your hair, cells in you mouth, your stomach and bowel, blood cells... different drugs affect different parts of the body.

The other drug I'm taking is Cytoxan.  This drug is classified as an "alkylating agent."  Does that sound a little familiar?  History buffs?  Here's the really shocking news... it's a derivative of Mustard Gas.  MUSTARD GAS!  Unlike most chemotherapies it can cross the blood-brain barrier.  A lot of the side effects are similar to Adriamycin.

These drugs are usually out of the body in about 48 hours, give or take.  It's so, so, so important to drink a lot of water the first 3 days or so.  Empty the bladder often, and get up in the night to empty the bladder because it's so caustic to the kidneys and bladder... you do not want this stuff sitting there too long in any concentration.

My very personal side effects have been (and these are the things I need to remember):  The day I have my chemo doses I start to retain water immediately, that's the steroid talking.  Sleep is elusive at best.  My taste buds go south soon after the first actual chemo (Adriamycin) administration.  I'm taking a lot of anti nausea medication for the next 4-7 days at least (again, I'm always queasy right up to the next dose).  At about day 5, post chemo I start getting a wheeze in my lungs and have a productive cough.  My throat increasingly swells over several days to the point where taking other important medication becomes more challenging.  During this time I also start getting mouth sores, watery eyes, bounding heart beats off an on, swelling of my feet and ankles continue, puffy face, my vision has gone south, gastrointestinal problems from heartburn to diarrhea, and this last time some pretty intense abdominal pain.  All of these things last over a week.  To top it all off I still have a lot of breast pain, some days worse than others.

When I go to bed at night I start on my left side (doctor instruction) the heart is less restricted that way.  I do the same when it's beating crazy hard.

The immune system is shot, gone, because of both the steroid and the chemo combo.  I have to take my temperature daily.  Infections, colds, flu, would be, well, not good news.

This drug combo is so damaging that its given 3 weeks apart (for recovery time) for 4 doses.  The next two, assuming everything goes well, is November 14th and then December 5th.  I'm seriously hoping for Thanksgiving and Christmas eating!  Then I start on a new weekly chemo regime.

I had a very scary experience on the road driving to work last week where I was taking my meds with crackers and coffee and I knew the last couple of days it was getting harder to get my pills down, but there I was and my pill lodged in my throat.  No air, blocked airway.  Emergency!  I hit the emergency lights on my car and pulled off the road, the rest area near Elma was right there... as I drove in I had in my visual field sparks of light and dark where your brain is telling you that you aren't getting enough oxygen and you're going to pass out... and then... (all this time I was trying to swallow) finally, finally it went down!  AIR!  Needless to say I don't eat in the car anymore.

This is life-as-I-know-it currently; and I'm handling it.  Oh I have my moments, but in context, the bad moments are fleeting.  It's just my reality right now.  I'm learning how to do some things differently to help offset the changes.

Nuestra Senora de Guadalupe

Things We Need

Since my current adventure started I have been wearing a necklace given to me by a family member years ago, it's a pendant of Our Lady of Guadalupe.   I think all Chamorro's are Catholic.   : )   My aunt said:  "Whatever you believe in, Mary is always your mother."  The back says "Pray For Us."  It's silver with an aged patina, the picture does not do it justice.  I wear it everyday.

You know no one... including the Spanish... knows how "Guadalupe" got attached to this icon exactly... a mystery for another time. 

I was reading on Anne Lamott's FB page about how she always wears a Miraculous Mary on a chain along with another pendant that says "God's got it" and so feels semi-okay most of the time.  

I feel much the same.  There is comfort in something so small.  It's a little inexplicable but true nonetheless.  A family thing, a spiritual thing, something tangible to touch when needed to remind you, yes, you're still here and it's okay.  I am comfort.

This last chemo has kicked my ass, and yes, I'm sure further down the road new heights will be hit with this.  Though I haven't... and that's something to be said, all I want to do is vomit.  What little energy is there is spent on NOT vomiting.  It's a delicate balance.   You can never tell what's going to set it off.  A scent, a food, the refrigerator, the cat food, someone else' lunch at work, a perfume, holding too much fluid in your mouth when you're brushing your teeth, someone's breath, their scent, a car, outdoors, indoors.  Get the drift?

And then there's the fatigue.  All I want to do is sleep, including while driving.  Okay, we won't go into that, I carry apples and/or carrots to help keep me awake.  It's the only thing that works.  BUT... all I want to do is sleep.  What?!  I have to drag by butt across the room???  Noooooo!  I don't feel like chatting on the phone.  I don't feel like doing anything at all.  I'm barely coping right now with myself.  I'm hoping to feel better soon, the week following chemo... not good.  I did manage to get a good amount of food in me today at lunch, and felt the boost from that.  Auspicious sign.  Nutrition works!

I am hopeful for next week.  Things should be tasting better, going down easier, and I should be feeling better.  I plan to sleep this weekend.  

I've got Mary on my side.

It's here...

The last 4 days or so there is an increase in hair loss.  I sit in my room in the mornings to put my face on and oh... dropping some eyebrow... or sprinkle of eyelash (I make sure I wear mascara so I'm not getting any lashes dumped in my eyes during the course of the day).  What am I going to do with no lashes???  I get stuff in my eyes all the time as it is, especially cat fur!  Anyway, the last 3 days brought a new phenomenon... scalp pain.  Needles in my scalp!  I came home today and did a little Googling... I LOVE Google.

More tears... My. God.  So much info on this subject... so, so many women experiencing this.  Makes your heart hurt.  I feel their pain.

I did learn some things.  I also learned Turneric is not good during chemo, it blocks something or other and interacts with the chemo itself

... need to do more research on this.

Back to the lack of eyelashes... maybe I should just do glasses to help protect my eyes and focus on lips?  I still have pretty full lips... votes?  Red lips, burgundy lips, brownish lips, something that says "look at me, look at me!"  Well, no... I don't have to get all that crazy... but you get the drift.  Meanwhile, I'll just live with the scalp thing, not much choice there... and hope it goes away... soon.

Nam-myoho-renge-kyo.  Trying to bring in the Mystic Law of the Universe!  Can't hurt.

Stuff & Nonsense

A Tiny Ode to Tami

In the early 2000's I really loved the daily inspirational quotes from Mary Manning Morrissey.  For the most part they really spoke to me.  One of my favorites that I have shared with coworkers is the one about how St. John of the Cross coined the phrase "the dark night of the soul," it's a book in fact.  It was about that in-between space where your old life doesn't work anymore and you haven't quite moved into the new one.  I always thought that so a propos for folks newly in recovery, trying to find their feet in a new reality.   Oh, and hello?  That's where I am right now.  Trying to find my feet.

I went to get my head shaved and my hairdresser Tami (not sure how she spells her name!) greeted me with a hug.  I sat in the chair and she got the clippers out.  "Wait!  No cutting it short first???  You just start clipping???"  Apparently you do.  It was a little like the scene in GI Jane.  Tami had never seen that movie but she probably will now.  She said I had a nice round head.  And yes, it felt good to feel my scalp in this new way.  I put a temporary wig on that I had, it looked horrible but would get me home.  We got up to the counter and though I was prepared to pay she smiled and backed up and said no, she couldn't take any money.  I fussed with her a little, and she was so sweet not allowing me to pay her anything.  We hugged again, she gave me her email to keep in touch and I was off.  It will be a least a year and a half before I see her again.  I cried all the way home.

I've been crying ever since... in between distractions.

I had a sore throat on Friday, it had been sneaking up for a couple of days and presented itself in full force.  I still had to go see the oncologist regardless for blood work.  And the good news is (despite my reality) the blood work came back favorable, meaning, I was a little anemic, and a little something else, but overall, it didn't destroy me!  Yay!  I get to continue!  She gave me gold stars for tolerating the chemo!  Except... why... well I had a lot of questions, the biggest was how do you measure progress?  Do you just do a known chemo plan based on past successes and hope for the best, or is there a way of knowing.  I have friends to have 3, 5, 10 year checkups who say they passed and are cancer free, how do they know?  Answer:  There is no way of knowing really.  So, unless a problem arises that indicates something is going on you just hang onto that hope.

Alrighty then.

My eyesight has gone south, reading, and computer vision.  She said that was probably because of the steroid (and emotionality too, I'm sure).  You get lots of meds with your chemo, and that's probably a good thing.  I've essentially never had heartburn in my life, I do now, so I get a pill for that too.  I did find out the chemo is out of the body within the first 48+ hours.  Really?  It's the effect of that chemo that's so long standing.  I'm always queasy.  Always.  Erin, thank you, the Queasy Drops work!  I think the Ginger Gum works so well because it's so hot in my mouth it distracts me.

My port (this picture is from this morning) still hurts a little, is tender, and you can still see the bruising.

Had my first lone grocery store adventure on Saturday, David is at a conference.  There I was in the baking isle when suddenly I got hot (threw my

sweater off), then a cold sweat, panting for air and this sudden extreme fatigue came over me, like I couldn't lift a finger.  After the worst part of it ebbed I checked out to go home.  Ate, drank some fluids, rested and went out to do Os' shopping.

Have I ever mentioned I have a 15 lb Norwegian Forest Cat with an eating disorder?

I do.  Mama has not been feeling good so I've been lazy and giving him a lot of crunchy food, good crunchy food, but I'm usually a good mama and feed him wet food (human grade good food).  I decided I needed to put him back on his wet food diet and he will have nothing to do with that.  No, I won't eat.  So I get him this new food that's specifically for finicky eaters and he stands 4 feet from it and sniffs the air... and walks away.  Okay, he hasn't eaten in 24 hours so I go get a spoon to feed him that way... to get him started... and look back... he's eating.  A little.  Okay, licking.  We're having the same struggle today.  He's worse than a teenage girl.  I see feeding him in my immediate future.  I get zero breaks from this cat.  He's so freakin' gorgeous that in the midst of frustration he's so dang endearing.

Life goes on right?  I'm taking one day at a time, sometimes one moment at a time.  I'm getting a crash course in a new life and it moves faster than my usual slow pace.  I love slow, I have a deep appreciation for slow.  Hard to keep up, you know?

Chemo & Port

Cornbread Tastes Like Cornbread  

My chemotherapy started Friday October 3rd.  My doctor saw me for a few minutes beforehand and informed she had some of the biopsies retested from the surgery.  Rather than being a rare case enigma, what she suspected was now true, I have two separate cancers occurring in my right breast.  One is the slow growing tumor that was removed and the other a wildly aggressive cancer that took over all my nodes and breast tissue.  Well, how 'bout that?!  This will mean an additional chemo drug, Herceptin, that I will be on for a year.  I'm just, you know, going with the flow... "like water off a spinning ball..."

My port was not in yet but they wanted to get the show on the road... me too... so they set me up in this nice suite, in a comfy reclining chair, and I had my friend Abigail with me for this first visit.  We watched other folks come and go.  First the infusion of saline- 30 min, a steroid- 30 min, anti nausea- 20 min, Adriamycin- 30 min, Cytoxin- 1 hour, saline again 20 min.  Abigail and I chatted off and on throughout.  I went to the bathroom (only for toxic avengers) which was a beautiful sunny bathroom and noted a mosquito flying around and landing on the wall.  I smiled.  When I walked out I said there a mosquito in there... a really stupid one!

I did fairly fine, noticed my tastebuds going off relatively quickly, mild nausea only that night.  Saturday, and already the "tireds" were kicking in.  A little more nausea but had meds for that, not too bad.  Sunday very tired.  Really didn't do much and doc said to take it easy this weekend.  

Never, ever, ever get your port in after you start chemo!!!  Big tip here!

The Port   

A port is a device for easy entry into a big vein for chemo or to draw blood.  It's placed under the skin on your chest.   So when you go for your appointment they just hook in and do everything from this one port.  Spares wear and tear on your veins.

Monday was port day at the hospital outpatient surgery.  So... okay, when you're dealing with nausea it is not a good idea to go without food or water!  Or, have a surgery!  I started retching and vomiting on the surgery table, they were trying to get IV meds in me as fast as possible, but nope!  I am the queen of vomit!  Actually, retching since there was nothing coming up.  It was cool, the surgeon was waiting patiently for me.  After the port went in and surgery done I was parked in the hall vomiting, er, retching again, over and over.  Finally they got it under control, good thing too because I had maxed out the medication.

David finally found me so we could go home and I slept, and slept, and slept...

It's now 3:35 on Tuesday and I'm just starting to feel semi-normal, and conscious.  My eyes have not wanted to focus much, at least for reading up to this point.  I went to the grocery store earlier, and that was an assault on all of my senses.  

Everything tastes so, so weird.  Indescribable.  Protein is important but the very least thing I'm interested in.  I go with whatever I can get down at the time.  Thank you to all my Facebook friends for you input, strength, and wisdom during this very trying time of mine!  It's all appreciated!  For my sister, I love you!  Finally David, who makes it all a little more bearable.

The Fear

I loathe rushing around, I really do.  Had the Echocardiogram today.  This afternoon I was sitting in my office and Abigail was talking to me and I suddenly realize what's happening... something is in my left hand frozen in mid air, my right hand is on my computer and I'm bouncing my leg fast and furiously; looking at her with wide eyes.  I stop.  Realization.  It's here, the anxiety is here again.   Abigail understood, "how could you not be?"  Shed some tears in secret at work.   Yes, secret, don't say it's okay to share it because if I did I would completely lose it.  I have really infectious tears, then others would cry, we'd all be crying and then our eyelids would get swollen and faces blotchy.  I would not recover.

Instead I went out to dinner with Abigail, Indian food one of my favorites.  It was a pleasant respite.  And then I cried off and on all the way home.

Fear.  Fear of the unknown.  Great gobs of fear of chemo and all of it's possibilities, of ports, of my diagnosis, of my future for the next entire year.

Tonight, just tonight... I'm afraid and feeling vulnerable.  As I write this tears are squirting out of my eyes.  I'm tired.  I don't want to do this.

"I must not fear.  Fear is the mind-killer.  Fear is the little-death that brings total obliteration.  I will face my fear.  I will permit it to pass over me and through me.  And when it has gone past I will turn the inner eye to see its path.  Where the fear has gone there will be nothing.  Only I will remain."

Oh, Frank, if only I were a Bene-Gesserit.

Blazing Through Darkness

I stole that "Blazing Through Darkness" from one of my favorite John Berryman poems Op. post. no. 12.  Finally, I get to use it!

Doctor visit over and here's the news:  The PET scan came back clear.  This came with a caution that it didn't mean there weren't cells somewhere that were replicating as we speak, but the chemo should take care of that.  Huge, anxious-ridden load gone!  I can breathe again.

Next we will be putting in a port for the chemo, electrocardiogram, something else I'm forgetting; and  I have to do these before we even start the chemo that is slated for next Friday.  It will be a busy week.  I'll be on Cytoxin, Adriamycin, and one other that also escapes me right now, but is taken at the same time as the Cytoxin.  There are a myriad of other companion meds as well but those are the big ones.  Schneikies, this is so weird.  Have I mentioned how freakin' scary I think chemo is?  Only totally.  Wish my doctor could have used a Jedi mind trick on me so I could remember all this stuff but I do keep an organized notebook to help.  The hospital will just call me to do stuff and and I will comply.

I will lose my hair.  She wrote a prescription for a "cranial prosthesis," a wig.  "Dispense 1" Cute, huh?  I'm looking forward to this, why you might ask.  Well, I remember actresses Persis Khambatta, and Sigourney Weaver saying about shaving their heads for roles how sensitive the scalp is and how incredibly good it felt to run their hands over their bald heads.  Yeah, I want that!  Won't be forever and I'm wishing and hoping my hair comes back in curly!

Dear Friends/Co-workers:  Make sure I'm drinking a lot of water.  Very important!  This is how these poisons are excreted from the body and I suck at Water 101.  I try... but I suck.  Must do better starting now!  Gonna get a big ol' water receptacle, gonna fill it up and drink it!

David and I had lunch at the Iron Rabbit before leaving the Olympia area, my new favorite restaurant, we had lamb burgers.  I'm in love with this restaurant.  They have a tartar sauce that has an unidentifiable ingredient that makes it so different from all others!  Stop it, it's deeply meaningful, and important because another week and  I won't want to eat!

Dear David,
"You and I, we're like 4 year olds
We want to know why and how come about everything
We want to reveal ourselves at will and speak our minds
And never talk small
And be intuitive
And question mightily and find god."

Dear Alanis, I found my "like-minded companion."

Surgery Day

Step By Step (you have time to back out!)

Surgery day started at home with a Lidocaine cream to the right nipple... this is for the nuclear imaging later in the morning.  The staff at CMBC gave me a tip to use that cream at home and use saran wrap over.  If you ever have to do this be generous with that cream!

Alright then-  starting the day off in Tacoma at 0645 at the Carol M Breast Center... for a wire guideline for surgery.  I had the same team who did the ultrasound and biopsy.  It didn't take too long and before I left the facility I put even more of the Lidocaine cream on.  Off to TG and nuclear imaging for the next step.  Remember when I said you might want to wear a mouth guard?  That would be now...

The procedure at nuclear imaging consists of radioactive injections into... that's right... the nipple.  <shudder>   Three of them in fact.  BIG needles.  I have to say my generous application of that cream helped with pain immensely.  Yes, there was some discomfort, but it's more the texture and thought of the idea of the procedure that causes more cringe factor than the actual pain.  The purpose of this procedure is to visualize the sentinel and other nodes and follow their path for inspection during surgery.

Now we wait.

During this time I was admitted to my room by a very nice aide.  I did send David who was with me this whole time... away.  Not everyone does this and it's a personal preference.  I needed my own space to cope in my own way; and not worry about him and how he was coping.  He could have handled it, I just needed to do it this way.  I went through a lengthy admitting process with an RN which was interrupted by a call from nuclear imaging to now take some pictures.

Somewhere in the 1100 hour I saw my surgeon who wrinkled her nose at my anemia (runs in my family, we're all anemic, even the males) and also my low Vitamin D level... something to work on later.  She showed me the node pictures we will be checking on.  Then I saw the anesthesiologist who did his own lengthy admit.  I dutifully notified him I come out of anesthesia pretty slowly and vomit abundantly, or in this case retch energetically!  Most medications for nausea are also sedative, so... what ya gonna do?  Nothing.  Need to add here, even though lots of folks are taking histories and questions are repeated, it's important because going through this 3 and 4 times, it was that fourth time that I remembered things I had forgotten.  

I was in and out of bed a lot due to physical discomfort and anxiety.  Finally it came time to put the IV in, and I fussed at the nurse when she wanted to give me a Heparin shot.  Are you kidding?  You take me off my regular meds for a week because they thin the blood just so you can now give me Heparin?  The medical world is a curious place.  I have a guess at the reason but... whatever.

1315 and time for the surgery (as scheduled) and off I go.  It was at this time that I realized TG was uniquely designed in kind of a mirror fashion so family and others can roam the halls on one side, but there's a secret back side that patients can be transported through without a lot of contact with others, or very few others.  Ingenious!  Secret things go on in those back hallways I'm sure of it!  They rolled me into the operation room where my doctor was talking with her team on one side of room and the anesthesiologist and a couple of others were on the opposite side.  Moving from one bed to another is no small task when hobbled with an IV in your hand and your arthritis is flaring up because you haven't had your meds for a week!  I made it and made sure since I was going to be on this table for awhile and wanted to actually be able to walk later, that I was comfortable and various body parts were supported.  Two pillows under the knees, one under the heels, and the very kind anesthesiologist anticipated and slid one under the small of my back.  Ahhh... 

Okay then, I'm ready.  Injection (your going to start getting slee... and... Zzzz....

I hear David, then see him.  Someone else is in the room talking to him.  This whole section is really pretty fuzzy except that as soon as they stood me up to get dressed; then came the retching, again and again.  We somehow made it down to the car... retching... and off we go.  I wanted to go home following the surgery but it became apparent this was not a good idea.  We ended up staying at his place in Fife.  I had a dark room with air conditioning (hot day) sleeping away with intervals of awake and retching.  A little water, retching.  I woke up later that night and had toast I think, more water and back to bed, I was staring into space anyway.  Retching, and out.

In the morning I just wanted to go home as soon as possible.  No more retching so off we went.  The next 3 days were a blur too; the pain was not too awfully bad, I only did half doses of pain meds during the day and whole dose at night for 3 days.  The swelling of the whole upper arm and breast was terrible, of course had to keep incision sites clean and dressed.  Had a little trouble with one but it has finally cleared up.  There was discomfort for the whole 2 weeks and even first week back at work, but acetaminophen handled it pretty well.  

David shared some things with me the doctor had told him that I had zero memory of.  That first week post-op was emotional and I forgot how stupid one gets following surgery.  Words just did not come to me.  David had a good time trying to figure out what the "thing" was... which applied to everything!  It was like a little game!  We laughed fairly often about that.  My kitty Os was a concerned companion as well, ever at his mama's side.

I had the discussion with David about this being a situation I was in the middle of and he was experiencing a facet of it that I couldn't really help him with.  His experience was as unique as mine, but different, and he needed to talk to his friends/support people.  He has several male friends to do this with, women as well, and I could only encourage that.  He was very strong and didn't overreact to everything I blurted out... which I'm sure was some scary stuff about mortality and that general theme.  We both have a heavy road ahead of us.  He is smart, funny, a wonderful care giver, and oh so easy on these eyes!

A week later my post-op visit was a downer.  They found more involvement than expected and all of my lymph nodes were dark hard little rocks.  All were removed.  Surrounding tissue was removed and didn't look good, biopsies elsewhere didn't look good.  Then there was something about "margins" and they have to go back in, and do more surgery.  "Whack 'em off" I said.  "Lets do the surgery now!  They served their purpose, take 'em, I'm totally okay with that, take 'em."  Alas, diagnosed at "at least Stage 3" we need to get the chemo started ASAP to treat systemically... since the likelihood it has moved outside of the breast is pretty high.  We worked on a referral to switch services to the Olympia area to ease that path for me for the oncologist, the chemo, and the radiation.  Full meal deal.  

I want to take this moment to say in spite of all the bad news all along the way that my doctor/surgeon is really a wonderful person.  Very direct and I appreciate that.  At every step along the way from nurses to techs it was "oh wait... your doctor ----'s patient.  She likes things done a particular way."  This sometimes seemed to be with a bit of genuine fear (that puzzled me at first, then amused me), but it was more often with respect.  The admitting RN said "you don't just have a good doctor, you have a great one."  From my doctor's point of view when I told her all of this, simply said, "it just about patient care, that's all."  Humble in all her awesomeness!  

Next Up:  The Oncologist

In The Beginning...

Tell Your Story

Saw that, heard that.  Okay.  This is a story about my right breast and recent diagnosis of Invasive Ductal Carcinoma. The three words you don't want to hear that will change your life forever.  Wait, shouldn't there be like a prologue or something?  Something about my very first mammogram in December of '94 when the radiologist said "there's a very large mass in your right breast right up against your chest wall."  I'm not kidding- I giggled, then I laughed.  Really.  It's immaterial but there were other things going on in my life that kept smacking me in the head and this was a final blow.  I said "of course there is."  At that time they prepared you for the worst possible scenario and scare the heck out of you.  My sister came up to take care of me just in case.  Oh the drama.  What was removed was benign.  Moving on.

Over the last 4 years there have been, again in the right breast, calcifications and a Stereotactic Biopsy, boy, that was fun!  A lump that vanished, and then, here it comes... in April of this year I woke up to a massively painful breast!  I mean I couldn't stand my shirt, or my own hand to even touch!  In hindsight this was the first signal that something was very wrong.  I called my doctor "I think I have mastitis!!!" Went in and yes, looked like mastitis, went on antibiotics and felt somewhat better a couple of days later.  My yearly doctor visit was two weeks later and though I hadn't noticed any lingering discomfort myself, when she went to examine my breast... let's just say it was lift-off, right off the table!  She saw a blush on my breast and the oddest thing... the areola was fading in color.  Get thee to a mammogram!

So fuck that.  I couldn't do it.  Too much pain.  My doc sent me instead to a breast specialist in Tacoma who also happens to be a breast surgeon.  After a lengthy history she still needed a diagnostic mammogram and I had to bite the bullet!  It was the first time I had been to the Carol Milgard Breast Center.  It's like a little spa, warm reassuring staff, women running around in white robes.  Coffee, cocoa, tea.  When I went in I held both my tech's hands in mine and looked steadily into her eyes (demanding direct attention).  "My right breast is really painful, I'm really scared.  I need you to take your time and be oh so gentle with me."  I could not have asked for a more compassionate person to take care of me.  She was amusing too, repeatedly saying throughout "comme ci, comme ca."

They found "something."  This was followed up with an immediate ultrasound.  Yep, something.  

Next: another doctor visit to go over those results and then schedule a biopsy.

The Biopsy

Mental Flow  (somehow this got lost so added it here)

I started my blog last night because I hadn't slept more than 2 hours collectively on Sunday and Monday nights.  I was wound the last 3 days, hyper.  Possibly hit some level of anxiety because during the days I've been having palpitations... that I shouldn't be based on the very slim use of caffeine in my life currently, plus I take a beta-blocker so... what the...  Anyway, my mind has been awake and making huge leaps in thought.  I decided it was time to write the story... and as a friend said- "Anything that quiets the chatter is way good."  It just flowed out, a good portion of this one too.  Oh, did I mention I slept like a baby last night?  'nuff said.

I should have mentioned that during that first visit to the specialist, my doctor didn't really think there was going to be anything wrong.  I had breast pain and was told some women just have some breast pain.  True enough, I have even known some.  Going off caffeine and chocolate was first on the list and should make some difference.  I was okay with going off the chocolate, but coffee... tea... (grumble, grumble)  What I really liked about this doctor was her suggestion to add Vitamin E and Evening Primrose Oil to my daily regimen.  We also went through the "Breast Cancer Risk Assessment Tool" together that can be found at:  http:www.cancer.gov/bcrisktool/  I should add we did it 3 times because she was surprised I was at 18%, thought it higher than it should have been.  In the end we agreed it was probably ethnicity and prior biopsies. 

There I was back at the breast center having had the mammo and ultrasound; this time for the biopsy.  I had the same tech and doctor who did the ultrasound the week before.  As biopsies go it really wasn't too bad, the worst being the numbing fluid going in and that lasts... oh... maybe 2 seconds.  This is a fairly quick procedure.  Pac-Man taking bites.  The tech was a beautiful young woman whose mom went through breast cancer surgery and treatment five years ago and had the same doctor I did.  We were in agreement there should be music in the room for this procedure!  Distraction can be a useful tool sometimes.  The surprise came at the end when I squirted blood out everywhere as they removed the biopsy tube.  Warm, red shower... on everyone!  Most unexpected! My lovely tech had to apply pressure for 15 minutes.  The result of that was a hematoma, or as I heard a doctor once say many years ago- "a hema-tomato."  It lasted right up to the surgery.

Back to the specialist for results:  Invasive Ductal Carcinoma.  They had biopsied the tumor and surrounding tissue- all came back positive.  Okay.  Alright.  I tried my very best to take a breath/or/not hyperventilate, I can't remember which it was, possibly both.  I found myself in this strange altered state the rest of the day, like I was under water... kind of sensorily blunted.  

The Plan:  next stop surgery and then radiation.  "We're going to take the tumor, some of surrounding tissue; we're also going to do some nuclear imaging of the sentinel and other lymph nodes.  We'll do more biopsies on everything we remove.  You may or may not need chemo, you'll see an Oncologist who will determine that.  Looks like Stage 2 right now."  Folks- I hesitate to tell you what that nuclear imaging consists of; but oh no... I will not spare you when the time comes.  You might want to wear a mouth guard though.  Tacoma to Aberdeen with tears off and on.  Schneikies!

I want to add here that such a scary diagnosis brings up a lot of fears- how am I going to deal with this and work?  Am I going to lose my job?  Do I have enough sick time?  How on earth and I going to figure out some kind of income while this is happening?  Will I go to debtors prison or just plain prison (they don't have debtors prisons anymore do they?  I don't think so... still... the thought was there)  I'm going to paying through the nose the rest of my life.  I have said many times in my life to many different groups- most of us are one or two paychecks away from financial disaster.  Tragic to know what you're facing and have to think about this stuff.  Right now this very minute I'm looking at thousands of dollars... okay, let's NOT think about that.  Give me the forms I'll sign them.  What else can you do?  Times have changed and outcomes/survival rates are improved; with that in mind the very biggest fear is still... that it's completely possible that there won't even be much of a future.  I know, I know, don't be a Debbie Downer... I'm not focused on that, really.  Alas, it is a possibility.  Okay, let's NOT think about that one either!

I have to say that when I told the management team where I work what was happening they were nothing but completely supportive and wanted me to focus on getting healthy.  We'll figure it all out.  That is something.

Next up:  Surgery Day & Significant Others