Monday, June 30, 2008

Simply Sad

All the masks I've worn in the past month have been put aside today.  My brain is numb, I can't remember little things, I feel fuzzy.  I feel like I am in a blurry tornado.  I am exhausted, yet ready for a fight.  Ready to learn more about myself.  Ready to see how deep I can dive.  Wondering if my lungs will collapse.  Although I know they won't.  I am back at that first week of feeling. Feelings of utter despair.  Surgery is tomorrow and I am freaked out.  
I will be admitted at 9 am.  At 11 I have a radio active dye injected into my right breast just above the nipple to help my surgeon locate my sentinel nodes.  If you are wondering what sentinel nodes are, my visual may help you.  I keep thinking of my lymph nodes like a bee hive.  And the Queen bee are my sentinel nodes.  They are the lymph nodes that get all the garbage dumped at them first, all the garbage that comes off my chest.  So the dye, theoretically would show the Doc where the cancer would spread to first.  They pull these guys out and any others that feel hard to the touch.  As hard ones, would indicate possible cancer.  They would then biopsy them and I will know within a few days if they have cancer.  
The thing that I have been bracing myself with all day, (I have to think of the possible bad outcomes so I am protected) is that they know of one node that was a few weeks ago 1.5cm's.  That isn't a small size.  So, if that isn't one of my sentinel nodes, that would possibly (all the possibilities of life-you gotta love them) indicate that the cancer has moved to other nodes and other places.  I read in Susan Loves The Breast that the scans I have done only detect chunks of cancer.  And when I remember my surgeon saying that they won't know if they got all the cancer, that is why I have to do Chemo.  Oh!  I just do a doozie on myself.  Putting stats together that may very well not belong together and I just have to reign in those horses.  So, you see, I am worried that the cancer is traveling around.  
The feeling when my Oncologist palpated those big node was a horrible icky, finger nails scratching to the tenth degree, painful and icky.  So, I want that thing out of me.  Today I called both my surgeon and Oncologist to confirm that they both know about that darn node and I want it out.  
My mother in law is here and will be for a few days.  I mistakenly told my Dad and my sis that I wanted them to come later, and today I realized I wanted them here.  This was a little too late.  I have been focusing on how sick I may be with Chemo, and wanted them here then.  What I didn't get until today, is that this is HUGE what I am going through, and them coming here is different than just coming to visit.  I have to stop worrying about inconveincing them but the fact is is that We all need to need each other now.  This cancer effects everyone in our families.  
My poor Dad finally brought himself to reading my blog.  The pain he must be going through, I feel for you Dad.  I can't wait to understand the depth of loving a child, like you love me.  Speaking of, not only have I been getting ready for surgery all day, I also gave myself my FIRST fertility SHOT!  I was able to do it, and it didn't hurt at all.  I am going to try to get some sleep.  I can't eat or drink anymore tonight or in the morning.  I am really scared to finally know what they can find out about this cancer.  It is doubly scary having something that they are unable to know exactly what this cancer is about.  The positive note, my statistics will help some new woman my age next year, with hers.  


Circus in my tummy

This morning it feels like there is a large high school band is playing in my stomach.  Its the mixture of the wonderful birth control pills (I don't do well with nausea) and the fact that in 28 hours I will be leaving for Bellevue to have my right breast operated on.  I am somewhere between nervous and panicking.  The hard part of not knowing a damn thing about what I've been diagnosed with, is that I am constantly reading about breast cancer.  Today, in ten hours it will be 28 days that I've technically "had" cancer.  I guess you don't "technically" have "it" until you get diagnosed.  So that gives me 28 days of constant reading and just enough to make my mind freak out about all the unknowns.
Luckily for me, this is a normal thing, and all you survivors out there write to me and answer all of these questions.  Like yesterday, my friend Shirley (who's been an RN for pretty much her entire lifetime-and is a two time breast cancer survivor) told me that it is baloney that I can't eat fruit and veggies.  If I want to eat them, eat them.  I just have to wash the hell out of them (okay she didn't use the word hell).  The recipe for cleaning them is: 
This is orginally from the Seattle Cancer Care Alliance.
You really don't need a special cleaner for your fruits and vegetables. Just wash them with a weak solution of dish detergent and a scrub brush works just fine. If you still insist on using a special wash. This is a good recipe that is the same as the "natural" stuff in the store.

1 Tbsp. lemon juice
2 Tbsp. baking soda
1 cup water

Put ingredients in a spray bottle. Be careful because it will foam up. Spray on vegetables, let sit 5 minutes then rinse with a scrub brush.

Yippee!!  Thrilling.  This is some of the best news I have had all week.  Some of you may wonder why I would even entertain the idea of  not eating fresh fruits and veggies.  The thing is is that our (I haven't started treatment yet, so I am still on your side-hence the our) bodies have developed an immune system against all the wonderful bacteria on our produce.  But the Chemo will wipe out my immune system and that is why many of the books and people have mentioned to me that fresh veggies and fruits will not be possible for me.  So, get out the scrub brush and spray bottle.  I am so scared of compromising my treatment, since it is all I have to kill this damn disease (please do not write me and tell me that it is not ALL I have.  I know that there are miracles, and I know that I have a mind that can do incredible things), I want to stick solely to what my Doc's say.  That is safe.   
Its 3:30 in the morning and the girl that used to need at least 10 hours of sleep a night is wide awake and exhausted at the same time.  Today, I get to stop taking those disgusting birth control pills and start giving fertility shots to myself.  Oh, yeah.  I thought and so did D that it was just one shot a day.  The thought of this is making me queasy.  D had to come to the hour long injection class with me.  He said that he was NOT going to be able to do any of the injecting, he just couldn't do it.  But last night I mentioned that all the shots start tomorrow, and he said if I needed him to he would.
We thought it was A shot ONCE a day.  No way.  Those that know me, I don't really have a place to grab fat and inject into.  But luckily (I know everyone always says I don't but really I do) I have gained a few pounds this past year (hence the reason I wanted to do a fast right before I got diagnosed) and so the ONE shot a day that has turned into FOUR shots a day, will make my stomach a nice black and blue color.  I am not looking forward to this crap.  This whole fertility stuff.  It is the one thing that I feel like an abused kid that is just checking out.  I need to gloss my thoughts over about all this and not "feel" as the fact that this may not be insurance for me, is way too much to handle.  In fact, I need to eat something to make this nausea go away right now.  Cuz I am getting another wave of sickness just thinking about how *ucking pissed off I am that I have had to do this and that D has had to do this with me.  I am so pissed.  

Sunday, June 29, 2008

Now calm down...

There, there, I keep soothing myself today.  It's all going to be known soon.  What is all?  My surgery is in 1 day and 22 hours.  Not that I am counting.  I sure am hell am counting.  I am freaked out today.  I have a few more hours of being my little limber 33 year old body.  D and I have been remodeling our house for the past five months, and it is almost ready to go on the market.  So today, I have been packing stuff and doing things, as soon I won't be able to lift a box. I can only imagine how hard that day will be for me.  I pride myself in my strength, I still have 17 years later my undefeated squat record at my high school for girls.  
Do you remember in the 80's the Hefty bag commercial.  As siblings do, I used to tease my younger sister by saying, "Hefty hefty Heather, wimpy wimpy Wendy."  So, wimpy wimpy wendy, will be coming and lending a hand as I won't be able to lift my arm.  I'll get over it, I am sure.  I am going to try to not take any pain med's.  Doc's say and other survivors say that the Lumpectomy isn't that painful.  What is painful is the axillary dissection.  I won't know how many lymph nodes will be taken out until I wake up.  
Which leads me to my inner freak out.  What if the cancer is in my lymph nodes and there is a little army of pac men just eating up my lymph nodes?  That scares me.  How does this change my 0 to 100% of getting "it" back, or from it not dying off in Chemotherapy.  Here is one of those 40 times, I have to stop myself and just think about how nice it is outside.  I need to go smell some Lavender.  Speaking of nice things.  My friends Marife and Hans stopped by yesterday with a care package.  She has started a business called Athema.  She makes tons of incredible concoctions of Lavender creams, my favorite- a Rosemary Infused Olive Oil (that is to die for), nettle infused vinegar, ect..  
After they left, I was extremely tired since I didn't sleep the night before, and I couldn't go to sleep because I started dipping bread into this Rosemary Oive oil and mmm  mmm, I was in heaven.  I wondered how my mouth will do with Chemo and if I will be able to eat this still.  Everywhere I read, Chemo makes mouth sores.  I guess it dries up the saliva in your mouth so it makes a haven for all those, icky things I won't talk about.  So, I need to do lots of rinses a day, ect.  If worse comes to worse, I will just blend up everything and suck it through a straw. Luckily I love protein smoothies.  Oh, but no fruit.  No veggies.  My sis, said in the hospital there is some kind of veggie/fruit rinse that she learned about for people with Cancer.  But then I think, if it kills harmful stuff on the produce, do I want to then digest that?  I don't think so.  
Today, I am scared. Soon I will know as much as they will know about my cancer in about a week.  And then, I will know how sucky and lame the other team is.  On a side note, I am now in Love with my short hair.  Especially since it is so hot here today.  I am going to go outside now. I love you all, and thanks for following my journey.  This jester alone, means so much to me.  To have this support.   

Saturday, June 28, 2008

Thinking all day about this

I want this blog to touch peoples hearts, to bring awareness, and to keep my loved ones in touch with my journey.  That being said, my earlier post today was one that I did not write but I found on another survivor's blog.  It is negative.  It is intense, and it may very well make many of you that do not belong to this club think that I am heading in a wrong direction with my healing.  I chose to post this, first and foremost because it is how I feel.  I have had many things said to me on this short time on my journey that hurt because people care and want to ask things.  But the questions are so insensitive.  So I posted this to help protect me from questions that are NOT needed nor helpful.  To be helpful to you all that are in my daily life wether it be in person or in email. 
Everything is uncomfortable.  My life is on hold, and I get to watch from a distant room everyone living their lives, fretting over all of their goals being met or not.  I can feel peoples fears now more than ever.  And it causes these uncomfortable questions from pouring out of their mouths.
I know I will be okay, wether I make it through this or I find myself coming into this world as a new little being with new parents, I will be OKAY.  Life is beautiful.  I am blessed to have such a wonder filled adventurous life so far.  I have LIVED and LOVED deeply.  I am not scared about my journey or how hard it will be because I have so much love and support around me. Although this changes from second to second.  Yes, to answer many of these questions, I am scared, so badly that I have to force myself probably 40 times a day to not think about it, otherwise it becomes debilitating. 
I felt like it was important to add this post because as of about two weeks ago I got SICK of hearing everyone TELL me I am going to be okay (just as sure of themselves as if before I got cancer, if I had asked if they thought I had cancer, they'd all say NO; well guess what, that was wrong), especially if I kept a good attitude.  Attitude has nothing to do with this.  And it has everything to do with this.  I guess I posted this to help protect me when and IF I get really ill from Chemo and people ask me questions that hurt and I don't have the energy to nicely respond.  This sounds so melodramatic, and I've resisted saying this but, I am going to be fighting for my life.  And it is insulting to me to have everyone tells me I am going to be okay.  Like I shouldn't go through this horrific experience of treatment and just trust blindly that I will be Okay.  
No one knows if I am going to be okay.  That is why I have to do Chemo and Radiation, for a long time.  No one knows 100%.  But what feels good is when people ask me, "what can I do?"  or any uplifting, " Your a fighter, you have strength."  Oh!  I just thought of a good one.  It's kind of like if your little son/daughter was about to play a game of baseball.  You wouldn't say, "You are going to do Okay."  You'd say ( or at least I would say), " Go get 'em tiger!  You have a slammin' swing."  Or, "You can catch every fly ball." 
Just being real with me.  Imagine you puking in a toilet bowl and what would you want someone to say to you?  I would like someone to say, "Here is a warm cloth to wipe your face with."  So, that is why I posted someone else's thoughts as they are how I feel at times.  I just want to help you all be kind and thoughtful with your comments or questions or concerns as I KNOW you WANT TO BE.  I mean really, if you haven't had someone with cancer in your life, how do you know what to say?  I sure didn't when my friend Jody was going through this with her mom.  I sure wish and regret I was there more for her.  I love you Jodster!!

Best of Craigslist

My new survivor friend Tink, put this on her blog, I Will Survive.  She found it on The Best of Craigslist.  This is what Tink said,"It is one of the most fabulous things I have ever read. I wish I could email this person and tell her that I love her. It had me in tears.... because I KNOW. I know how she feels. I want to give her a hug. And I want everyone to know that everything she says is totally true and this is how it is."

Originally Posted: Wed, 31 Oct 09:31 PDT
Cancer Rant

Date: 2007-10-31, 9:31AM PDT

In February of this year I was diagnosed with advanced Hodgkins Lymphoma. I went through eight months of chemotherapy, everything looks really good, and now I am just waiting my post-chemo scans to indicate remission. I am finally done with chemo. Woop woop. This is very good news for me. I’m real happy about it and I am excited to get on with my life.

I was a good cancer patient…no, a great cancer patient. I was tough. I didn’t curl up in a ball and hide, I faced it, I sucked it up, and got through it. I’m not looking for a medal, I just want to preface what I am going to say with the fact that I am not whiney or self-pitying, and that I realize that I am not the only one who’s had to deal with this crap, and that there’s worse things that could have happened to me. I have a wonderful family and caring friends that have formed a very lovely support system for me. I cannot thank them enough for all their help and love.

That said, here’s my rant…This goes out to everyone I know – friends, family, co-workers, doctors, nurses, radiologists, technicians, friends of friends, exes, and others…

1. There is no “good” kind of cancer. Yes, this kind of cancer at my stage has an 80-85% survival rate. That’s great, I am happy about that – really, I am, but that doesn’t make it “good” or any “better” than any other kind of cancer. Cancer is a scary thing, the treatment is excruciating, and at the end of the day, if you happen to get “lucky” and be one of the 15-20% that don’t survive, that statistic turns from a “good” one to a not-so-great one. Really. That’s like one out of five. Can you think of five friends? Picture them. If one of them up and died would you consider it a “good” number of them? I didn’t think so. So please, don’t tell me I got the “good” kind of cancer – don’t even suggest it. Don’t even say, “Well, at least you didn’t get _________ cancer, that would really suck.” Uh, hello, this pretty much REALLY sucks. Next time you get cancer I’ll ask you if you think the kind you got is “good”.

2. Don’t tell me things I don’t want to hear. For some reason, it occurred several times that when I told someone what I was going through (which is kinda awkward anyway), they would say something to the effect of “OH, my (mother, sister, aunt, grandmother, insert any other relative or even remote acquaintance here) just died last year of cancer.” Or “Right, my (insert distant relative here) died of Hodgkin’s.” What the hell?? I have been diagnosed with a terrible disease and am undergoing intensive and debilitating treatment, and you’re going to tell me about someone dying? What? Seriously? It’s better just to not chime in here. Again, next time you get cancer, I’ll try this line out on you and you can let me know what you think.

3. DO NOT ask me about my hair. With the kind of chemo I had, my hair started falling out around treatment #3, slowly at first, then lots at a time until I finally, and very sadly, shaved my head. THAT WAS REALLY HARD TO DO. It’s about a lot of things…it’s about vanity and feeling ugly, it’s about the stigma of being sick and that being obvious to the world, it’s about knowing or not who you are without your hair/eyelashes/eyebrows, it’s complicated. And, I take ownership of the fact that some of that is really superficial shit – but it’s very real and it’s emotional. So, comments like “How’s your hair doing?” “Wow, it’s really thinning out!” “So is your hair just coming out in handfuls?” and “Is that a wig?” are not helpful and WILL make me cry. If you think this is stupid or oversensitive, let me say it again: next time you get cancer let me know how this goes.

4. Don’t tell me it’s going to be ok. Bottom line is this – I know I want everything to be ok, and I know you want everything to be ok – you wouldn’t be my friend/involved family member if that weren’t the case. Unfortunately, we BOTH know that it just might not be ok. We BOTH know that there exists the possibility that it’s not going to be ok and that the disease isn’t going to respond, or is going to come back, and that even if I am tough and brave, it could kill me. I have had to deal with that idea since the word “cancer” came out of the doctor’s mouth. In that moment, and in the hours and days to come, I knew that it could happen that everything was not going to be ok. If I didn’t know that, cancer wouldn’t be such a big deal. If that weren’t a possibility, we wouldn’t have shed tears when we heard the news. So, for my sake, don’t say that line. I know it’s the first thing that comes to mind, and I know you mean it well, but try something else that actually means something, like: “Whenever you need anything I’ll be there” or “This is going to be rough but I’m here for you” or “I’m on my way over with a last season’s Top Model” or even just “Give ‘em hell, sista”. I know you may not get it, but next time you get cancer we’ll share profound understanding when I tell you that I know it may not be ok and that I know that’s real scary.

5. Don’t comment about my weight. Ok, here’s something that I didn’t know before I started this. Chemotherapy is NOT a weight loss plan – YES, they have indeed discontinued all the fringe benefits from the cancer card membership. Turns out, they give you steroids that make you hungry all the damned time. And, you feel like complete shit and don’t even have enough energy to walk up the stairs, much less to exercise. In the beginning when I was still trying to figure out how to deal with shitty side effects like constant vomiting, painful mouth sores, etc, I lost weight because I just literally couldn’t eat. But once I got that under control, the hunger would come on, and man, I can eat a lot. I was in pretty good shape (at the gym five days a week, healthy foods, etc) when all this started and now I have gained weight and am up a pants size. The once-muscle has turned into mushy fat and I’m not happy about it, but during treatment there was just no fix. So, the “wow, you’ve put a couple on, haven’t you?” or “I thought you lose weight on chemo” comments are not helpful and again, will make me cry. Next time you get cancer, see how you feel when I tell you to “hit the gym.”

6. Chemotherapy sucks. I think everyone knows that – I don’t know what the first thing is that pops into your head when you read that word, but I would venture to guess that it’s not something warm and smiley. It sucks, it really sucks. You vomit, are nauseated (which is so much worse than vomiting) all the time, you get terrible headaches, you can’t sleep, you get sores in your mouth and chronic yeast infections, you get seriously seriously constipated, your brain malfunctions and you can’t remember how to get to the bus stop or where you normally leave the toothpaste, your whole body hurts, your toenails fall off (wtf? Yeah) and now they give you shots to stimulate white blood cell production (at least in my case) that cause relentless, incapacitating pain that made you simply want to give up on living just to make it stop. Ok, I said it, chemotherapy sucks – and I am really good at being tough and not letting everyone know all the shitty stuff that’s happening to me at once, but you know it sucks. So, no, I am not interested in hearing you whine about a cold you think you’re getting, your scratchy throat, your eye/ear/sinus infection, your sleepiness, your headache, etc. I know you really don’t feel good, but c’mon man, suck it up – or at least go tell someone else who doesn’t have cancer. Next time you get it, you’ll drop kick the asshole that spends ten minutes talking about how bad their hangover is.

7. It’s a REALLY long road. Eight months is a long time to be sick. It just is, and I KNOW (I really know) that it gets old. In the beginning everyone called all the time, offered to go to chemo with me, sent lots of e-mails, came over to visit when I was sick….but after the months drag on it’s like people get sick of it. I understand that – ‘cause I got pretty sick of it too. I got sick of calling in to work, not doing anything fun, not seeing anyone….even just answering the damned “How are you feeling?” question….I felt like it was better to lie and say “fine” than to say how I really felt because people kind of don’t know how to react or don’t want to hear it. I have a wonderful husband and mother who took exceptional care of me, even when they needed a break, even when it got old, even when they got sick of hearing me say I felt like shit. They did that because they knew I needed them. I needed other people too, I needed girlfriends to just come over with a movie or a dvd of a funny tv show, or to call me on the days they knew I had treatment, or to just call when they hadn’t heard from me in days. Some did and some didn’t. You know who you are and why you didn’t. Maybe you didn’t feel comfortable or maybe you were too “busy.” Regardless, I love you, and I will do it for you the next time you get cancer.

I really, really hope you never get cancer. I mean that for everyone – even if you’re a jerk, even if you write to me and rant meaningless bullshit about my rant, even if you really deserve to have something nasty happen to you – I hope you don’t get cancer. It’s awful. I’m not one of those “I’m a survivor!” types, I’m not one of those in-your-face super tough post-cancer freaks, I’m really normal and I will get over this. That said, if you do get cancer or if your friend or (insert any relative here) gets cancer, you can bet your bottom dollar that if/when I hear about it I’ll be on your/their doorstep with a big teary welcome to the cancer club hug and a mop and bucket to clean the floors, or popcorn and a dvd for the kids, or dinner so you/they don’t have to make it, or whatever it takes, for as long as it takes – and you won’t have to ask for it, and you won’t have to say thanks, because we’ll both just know. It’s a special club and we take care of our own.

Friday, June 27, 2008

My name is on What Bag?

My very sweet brother in law and his family, Kale, Kristen, Haley, and Hannah made these two luminary bags in honor of me.  I was so moved to see these and remembered years ago just after my best friend Jody's mom, Sandy passed away.  There was a relay for life in Seaside, Oregon.  We walked around the track together and I would have never thought that one day, one not so distant day I would have bags in honor of my name around a track in Lynden, Washington.  I am so moved in two different ways.  One that I have family that would make bags for me and take photos for me.  And the other, I cry because it makes my Breast Cancer more real.  
Today I got my hair cut about 10 inches off.  To right above my shoulders.  I had to do it.  I am getting my game head together and hoping I do not get the dark circles under my eyes and loose my eyebrows and eyelashes with it.  But yes, I took the empowering step of cutting off my long beautiful hair and now have a short do, for a couple of weeks.  In a few weeks, my hair now will be thought of as long.  I have one more hair cut before the shave.  I can't wait to have a little pixie cut.  I will post new pic's tomorrow of my haircut.  

List of Potions

Here is the List of Potions and photos of me taking them, as of 6/27/2008. 
1. F18-Radio Isotope for the Bone Scan
2. Liquid Oral contrast w/ Barium a disgusting Berry or Vanilla Flavored Drink
3. IV Contrast with Iodine (this is the one that gave me the heat wave sensation)
4. F18-FDG as an IV again Radio Isotopes   So 2-4 were for PET/CT scans
5. IV Liquid Contrast w/ Gadolinium for the MRI

Thursday, June 26, 2008

Is this a Dream?

Last night I kept dreaming that my surgery was tomorrow (today now) and I was so anxious about it.  I'd wake myself up and remind myself that tomorrow was only Thursday.  I am anxious because once the surgery is done, within a few days I will finally have my final diagnosis and this will and won't be a great thing.  
The thing is that I find myself, like yesterday afternoon thinking in my head that maybe the Doc's will find that I don't have breast cancer.  That maybe this whole thing is a huge mistake.  Why would I have breast cancer?  It is just not possible.  So, maybe they made a bad mistake.  But then I have to remind myself, that I saw my MRI's and my PET scan and yes, I saw the tumor.  So, the countdown is on.  All my questions will be answered soon.  All the Survivor's tell me that this is the hardest part.  All that I have been through up to the surgery.  Once I start treatment its just moving through the process, and then life will be back to normal.  Possibly going a day without thinking about cancer.

Wednesday, June 25, 2008

Heart Racing Morning

One of my all time favorite things in life is to hear the VERY early morning birds chirp.  Oh, that little brat in me that LOVES to wake people up, just feels like a kid at christmas every single morning I hear those sweet little chirps.  I am up before them this morning.  I couldn't sleep, so I found myself inch my way over to D, like a babe trying to find its mom.  I needed to be touched, even if he is sound asleep and all I could have contact with was his foot.  I wanted to wake him up, and open all the christmas presents, to get him up with me and talk, (I'm laughing) but I won't.  If my younger sister Wendy was here, she'd be up for sure.  Not that I disrespect her less, I just love and I know she finds delight (laughing, delight, yeah sure!)  in my early morning wakings.  Delight, uh wiendel??  It doesn't matter,  I will anyways, I am your older sister : )  
But this is way too early.  I just can't freakin' sleep.  My heart is going to jump out of my chest with all the anxieties of having Breast Cancer.  You know, now that I have my business cards, my I am going to kick this thing and so I need to make it a business.  A business of Kicking Ass, it helps to legitimize it for me.  Thanks again D, for telling me I needed to get some made.  Anyways, anyone at anytime throughout my day, I just tell them, "I just got diagnosed with breast cancer."  I tell the bank teller, I tell the hardware clerks, I tell everyone.  I want everyone to know, that I GOT IT.  That they CAN GET IT, and women need to check their breasts.  It also helps me to just tell someone.  Everyone.  Pass it on.  So I hand them a card, with this blog address on it.
This would be the one time in my small town self, that I don't care if everyone gossips about me.  Let everyone be shocked.  Maybe the shock will remind them to check their breasts or remind those men to tell their wives to check their breasts more often.  
Yesterday was a fun day.  Sometimes in life, we just don't know why our heart tells us to do things but we all know that if you follow your heart it is always the right thing.  Almost 10 years ago (is this when that little ittzy bittzy cell went haywire), I dated a guy for a year whose mom had breast cancer that had come back for a second time.   She went through her treatment the year we dated, this all makes more sense to me know.  I think one of the reasons Spirit had me date him,  so that she would be one of my rocks through this.  I was in her life just enough that there is a comfortableness around her that my heart during this rough time can find solace and trust whatever she is telling me.  Yesterday I met up with her finally and we took a walk around Greenlake.  
She showed me her port, since she's a little stats monger, she told me that she is 1 of 2 women in America that our Oncologist knows of, that has had their ports in this long to have the continued Herceptin treatments, for nine years.  She is almost 74, and as active as could be, she had a faster stride then myself around that lake.  She told me that I will not need, I am going to say this again, I will NOT NEED to get a bone marrow transplant.  See, what happens with this whole being a newbie at Breast Cancer is if someone mentions to me, "Will you need a Bone Marrow Transplant?"  I get freaked out.  People are trying to help because they are scared for me.  But in reality, in me trying to stay present, I have just been ripped from that place and now start worrying about that.  
Luckily, she said I won't.  I was starting to worry that my whole body was going to be almost killed off from this chemo.  Like if my skin was just going to start peeling off from my bones.  Note to all, please don't ask "Future" questions.  You'll know if I need to get some horrid thing done, as I will "tell" you.  Okie Dokie??  
The count down is on for surgery.  There is a part of me that doesn't want this tumor gone. How do I explain this?  It's kind of part of me.  Hell, I made it.  It's some weird thing.  Did I tell you guys yet that the first week and my first Oncology appointment I tried convincing D and my Doc that I could handle being awake for my surgery and that I wanted to watch them take it out ( am I a control freak or what).  I don't want to miss seeing it.  I had my appendix taken out, and I still wish I could've seen that.  Like a tooth that had fallen out and swallowed before you realize, its just gone.  I told the Doc, I've dissected bodies before (in a cadaver class, don't worry I am not a serial killer) I can handle it!!  
My surgeon was glad that I have decided to not be awake.  He said, "It just doesn't happen."  But I am not the first that has wanted that they both said.  So, I have to remember, in fact on D's little iphone, I had him put a note on surgery day to bring the digital camera!  Oh, that kid on Christmas morning is jumping up and down inside me again.  Do you know what that means?  Some great pic's are soon to come!  

Monday, June 23, 2008

Chaos Theory

What happens to all those outdated clothes
What happens to all those memories of the past
Filed away in some lost trash bag

Mourning yet again, a new rites of passage
I thought I'd just mourn entering adulthood
Leaving that childhood at the beach

Getting married there was a bit of mourning
The end of my freewheeling days.
But this time
This Breast Cancer time,
Has stampeded my heart like leaving the safety of home,
Of the Beach.

I only feel safe in my past strengths
As if I've raised myself these past decades to be
A Survivor, to know I can make it.
I feel so scared, abandoned by my Own body.
My own mind, spirit, soul, blood, and lymph

Will I make it?
To where?
What will I be then?
I wonder now, who is this body, this spirit, this soul?
Does she have the chance?
Or am I just part of the worlds chaos

Before Cancer

Before I got that call that ended the carefree world of chosen anxiety ridden emotional moments I was reading The Diving Bell and the Butterfly. I had been listening to Sarah Cahoones latest record, over and over and over again.  In the past few weeks, I have had a strong repulsion to listening to that album or of picking up that book.  Those items helped me process and go over my old thoughts, or was it my old thought processes.  That book and that album will forever signify to me, my 33 year old fun and ridiculously stressed out life.  What a joke.
What a joke that I used to get so bent on all the small stuff.  I got my feelings hurt if something happened in real estate or in my life.  I always tried to make the situation better.  I am not that person anymore.  I actually have no energy to care.  Maybe I will care again someday.  But I don't think so.  I think I've just changed, and for the better.  My Dad always says, "Worrying about it doesn't change it.  Might as well not stress about something you can't change."  I understand now.  I understood then, but always new that that lesson would take age and life experience.  I have gotten a good dose of life experience in the past 3 weeks, three weeks in six hours.  
Last night I picked up that book and started reading it.  I did only because I hate to not finish a book, or anything for that matter.  It silently would drive me crazy.  I LOVE to check things off my to do list.  When D got back from band practice last night and crawled into bed, I asked him how he was doing.  He said that he is right now, just trying to act like our life is normal.  I told him, that my life is never going to be the way it was.  It will be new and we together will make a new normal.  I told him I understood what he was thinking and trying to be, but I also told him his life would never be the same way.  It is scary not knowing what is ahead for us on this journey.  I have no idea what this Breast Cancer road looks like and what I have to do to get better.  Curse that BEACHES movie!!  Damn Beth Midler!!  I wish there were more awesome cancer movies out there that depicted a good fight that was won!!  

Sunday, June 22, 2008

Weeds and things

This weekend is almost over, so that means I have just two more weekend days before surgery.  D and I got a lot accomplished this weekend and it feels good not to have so many monkeys on our backs.  He has been very supportive of me and it really helps to just listen to me.  I can't stay rosy and always in the present moment.  Although that is the only time that I feel good, is when I am in the moment.  At the bottom of my belly, I am afraid and sometimes it helps if I can tell someone all  those horrible fears.  I am really scared.  
What is incredible to me is that my surgeon told me that I may have very well had this cancer for eight years.  When he told us that, I blew it off like he was just throwing around a probability. He ended that thought process with, "You'll never know, how long you've had it."  The other morning I was reading Susan Love's Breast Book, and in this book she said that by the time Breast Cancer turns into a Lump it usually has been there for six to eight years.  So that puts me at 25-26, (so maybe the surgeon was right). 
 That is amazing to me.  I have been joking around that maybe the day those cells went haywire I ate one too many maple bars.  I love bakeries and I love sugar and it is hard and just wrong that I cannot indulge in this way anymore.  I wonder what I will grow to love, food wise.  Please don't comment that there is Stevia, because I think its disgusting.  Have you tried Agave Nectar?  I am going to try to make some bran muffins with my mother-in-law.  She makes really yummy ones with blueberries.
I've read about Port-a-caths this weekend.  They are the size of a quarter.  So there will be just a small bump under the skin of my chest.  Thank god it isn't some huge quart size container under my skin.  D and I have been thinking it was huge.  I get kind of creeped out thinking about it but at least I know now that its small.  I wonder when I get a massage, and I am face down, if I can lay like that.  Or if I will need a pillow under my chest.  D and I thought about what I could do while I am in chemo sessions.  I told him I just want to make a book of happy things for me and sit and mediate while listening to healing music.  This is the medicine that is going to kill any radical cancer cells floating around in my body.  I want to use this time with fully being in the highest of places and visualizing total and complete health.  Renewal.  

Saturday, June 21, 2008

Singing in my sleep

I keep forgetting to write about this.  If I ever questioned the power of music, last week (D reminded me of this the next morning) I sang Graham Nash's song from the album "Songs for Beginners", and the song,  "Simple Man".  The line I sang and changed it in my sleep was, "just want to hold you, don't want to let you go."  And Graham's version is, " I just want to hold you, and I don't want to let you down."  I was facing my fears of death in my sleep, my fear of not being able to hold my husband anymore, of dying.   Luckily we were sleeping, as I am completely tone deaf!!

I know I am not going to die, but one cannot control what the subconscious needs to process.  

Happy Solstice

One of the best things I do for myself is force myself from my fuzzy flannel sheets when I cannot sleep.  Since I've found out I have cancer, my sleep can become all about the fury of Breast Cancer. All the questions start piling on top of one another and soon my heart is pounding and I start getting so anxious.  The best thing I do for myself is get out of bed.  Luckily I love to write, so this is my only way of talking about all the hard stuff.  I can talk to D about anything, but there are only so many times I can talk about a port-a-cath to him.  I layed in bed this morning imagining that port-a-cath's tail being like a scorpion's tale to my heart and started panicking.  What if it hurts my heart?  What if it does start to hurt me and I can't get to the emergency room fast enough?  Do you know what this tells me, in the middle of my slumber?
To get out of bed, write about my fears, and then read about my fears.  Ignorance is a bad thing for me.  I have now turned my soon to be implanted port-a-cath into a scorpion's tale!!  Oh, I feel better now, I am laughing out loud.  Well, quietly it is 2 am and D needs to sleep.
I am so excited it is summer, as of almost three hours ago.  I wonder if I'll be able to go to my favorite little beach in Leschi this summer to lay out and listen to the little ripples of Lake Washington?  Will a sun tan be okay?  Will the chemo make my skin sensitive to the sun and may I burn more?  So many questions?  My Oncologist must get some pretty wacked out ones?Like my panic with the port-a-cath.  I am going to have to make it my friend.  Okay, that's it.  I am going to have to welcome it to my body.  It is going to save my little veins from being poked and prodded over and over again.  It will save them from getting burnt from the chemo.  It is my little helper.  I wonder what I  will call it?  One young survivor told me she called hers "Alien".  She made a joke to the surgeon once all her treatment was done, a year later, "Okay, now is your time to put anything else in me!  Are you sure there is nothing else?"  
Oh, boy!  I surely have no idea what is in store for me.  Yesterday was another doctor's visit.  I felt myself get kind of panicked over knowing I needed to go to another one yesterday. I thought to myself, " I can't wait till all these doctor visits are over."  I felt my body relax back to normal for a second, and then I realized that I was just getting started.  My life is soon to be one huge doctor appointment, starting July 1st.  How will I be able to make this fun?  I will soon find out I am sure.  Instead of date night, I will have chemo night, radiation night, will D and I have fun?  I have to stop myself here, as I will of coarse have fun.  Fun just might be measured in a new way for a while.
Everyone is wondering when I am starting my treatment.  I have no idea.  I am thinking mid-July?  I will of coarse be posting more info when I know.      

Friday, June 20, 2008

Fertile Hope

What a day its been!  I got the great news today that I got a grant from an incredible company based in New York called Fertile Hope.  This company gives money out for the fertility medications for young women with cancer, who are high risk of becoming infertile due to their treatment.
The weather in Seattle today is incredible.  I mowed the lawn, which is no small feet.  We have a huge lot with a gigantic hill!  I couldn't help but wonder how long it will be until I am out there again mowing the lawn.  I keep reading that if the chemo makes me tired, (sometimes hard to even breath one book said) that  the only way to combat the fatigue is to get outside and do some exercise.  Last night I spoke with my hair stylist who's been helping me to grow my hair super long.  I told her that I had Breast Cancer ( I can't help but capitalize it) and told her that in a few weeks I want to cut my hair to my shoulders, and then right before chemo I want to go shorter.  Then once my hair starts to fall out, then I just want to shave it.  I know that it will be a huge let down if I had huge clumps falling out on my pillow.  My way, I will feel empowered.
She mentioned that not all peoples hair falls out.  But I corrected her and told her that my Doctor looked me in the eye and told me mine was going to.  People without cancer seem to think that all cancer's are treated with one kind of chemo, and this is simply not true.  Since my cancer is aggressive and responds well to chemo, I will be given the extra strength elixir's.  Funny to think that I used to love to drink real healthy elixir's and now, I will have some disgusting lifesaving elixir poured into my port-a-cath.  I've also been thinking about how it will feel to have the port-a-cath stuck under my skin in my chest, I wonder if I'll feel it wrap its way around to its resting place above my heart.  I wonder If D and everyone else will have to hug me gently.  Ick!!

Thursday, June 19, 2008

It's not about the breast

Today was my last visit with my surgeon before surgery.  He helped me feel more informed and I use this word because the fact is is that "they" the Doc's of the world do not know what, how, or why breast cancer was, is , or in the future maybe formed.  And the 10% recurrence rate is a relative value, for all of us.  If you get cancer than X is your chance.  My numbers are not 10% but my numbers are either 0 or 100%. Not a mixture, not a smaller or bigger percent but either I don't ever get Breast Cancer back or I do, and it will come back 100% not sortof, not kindof, not a little, but if it does come back it does.  End of Story.  Okay, so the spiritual side of me can shift all those cells, and I will get to that work when I can.
First, I need to realize what I am working with, what the hell I am trying to shift.  The other fact is that I did visualize my body in complete harmony and I still got cancer.  The doc's and books say I should call it what it is, Infiltrating Ductal Carcinoma.  So, that is what I have and I know it doesn't make me what I am, but I have this cancer in my body right now.  Right now I am sick.  Right now I don't feel sick.  My heart is absolutely exploding with pain and grief, and sadness but I could be a poster child for health.  I am that model that is promoting health but takes a break and smokes a cigarette behind closed doors.  
Whether I get a lumpectomy or a mastectomy there is no survival difference.  I will survive, all the Doc's are saying that.  It is a difference of a Quality of Life.  Which today I understood on a deeper level verses the superficial "Range of Motion" I might have due to a mastectomy or wether or not my husband will be attracted to me still.  The real quality of life that my Surgeon spoke about today is that it might come back.  Which CANNOT be mixed up with survival rate, they are different.   No one can tell me any different.  They will have new numbers, numbers that are again for the general public, after my surgery.  Depending on how many lymph nodes are involved.  I will then again be faced depending on that outcome with new "life"decisions.  
My quality of life will be measured with questions only I can answer.  Because if the cancer comes back, there is a big possibility he said that it will come back in another place other than my breast.  So it is NOT ABOUT MY BREAST!  It is about my life, and how much of a risk taker am I.  It is also about the Doc's not knowing ANY real number for me, for my body, and for my immune system on wether or not it will or won't come back.  And if it does, where it would come back to, and when it would.  No one will ever be able to answer this for me.  So my faith comes into play here.  I have decided for sure to do the lumpectomy and before surgery I have got to get myself ready for that decision.  I have to look at it as it is "giving" me a choice, a choice after surgery, depending on lymph node involvement on wether to go back and do a mastectomy it is sparing my breast.  The question I will never know, until "it" comes back, "if" it does, is how long I am sparing this breast.  Which brings me back to It is About the Breast.

Wednesday, June 18, 2008

The Flood Gates are Wide Open

I was thinking last week that it had been almost a week since I cried last.  Today, watch out I couldn't stop crying, and I am not a crier.  We went to the fertility clinic this morning and set up my plan.  The girl who stopped taking birth control pills about eight years ago because I was worried I would get some horrible disease, today agreed to taking DOUBLE doses of birth control pills for the next ten days.  My angels have orchestrated an unbelievable timing that fits perfectly into my timeline of healing from surgery, harvesting eggs, and then starting treatment without delay.  The ride home was very rough and upsetting, so many decisions in just two weeks.  
I left the city for the afternoon and visited friends out on Vashon Island.  I got great news while out there, I do not have the BRCA 1 or 2 genes.  So that means no mastectomy on either of my breast.  I will heal much faster with the lumpectomy.  Phew, that was a huge hurdle to jump through.  I have had a day of running into people that I love and I would just start crying. My heart got opened up and I am thrilled that I am not a carrier and I am also so sad that I don't have anything to blame.  There is simply no excuse.  Absolutely no excuse as to why I have cancer.  Crazy.


Tuesday, June 17, 2008

Have I been depressed?

Today I think I am happier than I have been or maybe I have just been able to keep my head above the water for a while now.  I am not a depressed person, nor would I ever let myself indulge in that but I think I was on a bit of a gloomy cloud the past few days.  What snapped me out of it was remembering what my Oncologist said to me, who is very fatherly by the way, and what he said was, "Hold onto that 50% chance," when he was talking to me about being able to have my own kids naturally.
 I have been forcing myself to focus on the positive's.  But I also had my share of self-indulgent mourning of the fertility that I chose to get stuck in for about a week.  One day D said, " You know this fertility isn't apart of the cancer, the insurance doesn't even cover it, it is a separate thing."  But it isn't.  It is and was all thrown at me, and since I am a woman and since this is my body, it was apart of me being diagnosed with having breast cancer.  I think for a guy it may be different.  For D, he just wants me to focus on ME getting better and not all of these "other" things.  Which now about 75% of me gets.  I have gotten letters from all the mom's in my life saying for me to focus on myself right now.  The kids will come in whatever form they will.  Spiritually I understand this and I can say 99% of me believes this.  But it was a lot to move through.  It was a huge hurdle.
 I am over it now.   I had to, today I had to move on.  I chose to open my heart to the fact that I am going to choose to will my body to be restored to a healthier me when this is all done.  So today is a good day because I am happy again, or is it that little control freak in me that feels in control again.  
I saw my new Naturopathic Doc today that specializes in Oncology.  She said that I was eating everything that I should be.  The only thing she wants to add to my diet is Fish Oil, which I learned during Chemo is better than Flaxseed oil.  Luckily I like Carlson's Lemon flavor, its made in Norway.  She said she see's a lot of woman that are healthy like me that want to be able to blame something.  I felt the tears swell up inside me as this is how I feel.  I just want to say, "Ah-ha!  There is that damn little culprit."  If this genetic test comes back negative, I will never be able to say what "evil" stole this time from me.  I will get to have that be one of those mysteries.  I can make it a good mystery in my head, like the way both my husband and I felt like we should go to the Van Gogh exhibit on opening day, and how we met there. 
D and my younger sister thought I should add a post as to how the lump was discovered.  I simply noticed one day that there was a lump.  I second guessed myself for a few days, and to not be an alarmist I mentioned oh, so chalantly to D on the coach one night that I thought I had a lump in my breast.  I had him feel it and he said that I should go get it checked out.  I waited about a week, as you know how life throws all our little stressful to-do's at us, until D mentioned to me if I had made that appointment yet.  No, I hadn't and the reason I am writing this isn't that I found the lump myself, it is that I was then going to ignore the fact that I found the lump.  I was scared and didn't want to think about it.  Plus, everyone under the sun was saying it was just a cyst.  So, if I had listened to everyone and if I hadn't made that appointment than I would've put it off until next year.  Next year would have come and I would have at some point made my yearly exam appointment and maybe then it would've been questioned.  
Lesson here, if you find a lump don't wait and second guess yourself, that's what doctor's are for.  

Monday, June 16, 2008

Sunny Days

I have been feeling so good and healthy the last few days.  It is so weird to me that I feel healthy but this cancer is quietly so quietly killing my body.  What is even weirder is that I have to for the first time in my life make myself sick to make myself healthy again.  I keep waiting to start spontaneously blowing chunks or to start loosing tons of weight or just a sign that I am not well. But there are no signs.  My friend Gen said to me when I first got diagnosed, "When you scan your body can you feel the cancer?"  Great question because normally we can do that.  Its a silent killer this guy.  How bizarre.  
So the impending chemotherapy and radiation treatments are ahead a few weeks and I have right now to feel awesome.  And I do.  All day D and I were out in the sun tooling around hand in hand.  We went to the Tacoma Art Museum and then took the Vashon Ferry over to have lunch, and then drove home.  Our summer is going to soon be full of doctor appointments and a frame of mind that now I am trying to get ingrained in my and our heads.  It is that I have never wanted to be a victim of anything in this life.  I truely believe that I have the power to make anything be positive and if not than I fall into the victim role.  I am going to learn about myself in a deeper way, and am going to look deep into the meaning of life for me, and when anything gets hard for me I want to remind myself that we found it, we found it early.  And that I have the chance to kill this silent killer that once stalked me unknowingly.  And it is a good day.  It is a good day as I am alive and I am fighting a fight and I am going to make it.  
I spoke with a long time friend the other day that almost a decade ago was diagnosed with tongue cancer.  She has had a long battle with this disease as it goes away and comes back, goes away and comes back.  She explained to me that she is living with a chronic disease.  She remarked that it is only my first two weeks, and I am being so positive.  I told her that is all we have.  If not than I fall into the fear.  If all I have is two more years I want those two years to be full of love and of light and of me digging deeper into myself than I ever have.  I don't want to miss any opportunity to love in a deeper way.  So, yes this has been only two weeks in about five hours, but I get to stretch myself in new and exciting ways.
Today I am getting appointments made with my new Cancer specializing ND to help with any adjuvant therapies that are out there and also with a dietician so that I am eating all the right things through this process.  It is another sunny day here in Seattle, and I am going to go take a walk.  

Sunday, June 15, 2008

Familial Strands

Funny that yesterday morning I spoke to two friend's one who is my age and the other who is older, and they both said that their grandmother's, their mother's, and aunts had had breast cancer.  The older one of coarse "for preventative" measures had just recently gone to do the genetic testing with the same genetic counselor I saw.  But when the younger one told me that, "You know its something people would like to not think about."  This attitude is what kills women.  If this was a mandated test with complimentary care for positive gene carries with family ties like this it would save the insurance companies so much money.  It would help to prevent breast cancer and all of the long term effects it has on a woman's body.  I told my young friend that she needed to think about it and go get tested.  If all of those women in her immediate family have struggled and luckily they all survived it, she needs to take control now while she has control.
On a side note, this maybe one of the few times that I can say I agreed with what Bush has done while being President.  But a month ago, he signed and passed The Genetic Test law that those that are tested cannot be discriminated against and not given health insurance.
I couldn't sleep at all last night, and neither could D.  I had "cancer" dreams all night, and he stayed up worrying about me and our house that is almost done.  The house thing is just part of doing a job and having the kind of meticulous brain he has.  He will walk thru the house over and over and any problems that arise he will not be able to let it go until he comes up with a way to fix it.  So my poor husband slept as little as I did.  This morning I will try to let him sleep in.   The sister in me likes and REALLY enjoys waking people up.  Early.  Its the brat in me, but it brings me such joy.  Joy that I will not indulge in this morning.  Crap, I hate doing the right thing sometimes.
I've been thinking lately too about my last conversation with a young survivor.  She told me that one day I would be a survivor.  D had posed this same question as I designed my (I'm such a Capricorn) blog cards so that I can give them to people, " I see that you have- 33 year old Survivor.  Do you think that the Real Survivor's will be offended."  I said, " I don't care because in my mind and body I have survived already.  I am going to survive, and I've been living with this cancer for a while now albeit unknowingly.  I am a survivor."  I feel that anyone that has had cancer and they've recently got diagnosed or they recently have passed from this disease is a Survivor.  There is absolutely no difference, other than a mental difference and time and the struggle.  But I am a Survivor.  I am going to make it through this, I just don't know what "this" is yet.  I could say- 33 year old Virgin Survivor.


Saturday, June 14, 2008

Surgery Date

I keep forgetting to say this, my surgery is set for July 1st.  We will have the genetic tests back then and I'll be able to make a good decision with all the information.

Out on the Town

I had to get up, my five o'clock wake up hour visited me again this morning.  I spoke with a new young survivor yesterday.  I add the word new, to add emphasis that there are tons of us, yep..Heather you are part of a new sea of people.  D and I went out last night.  I had a great time, sortof.  If I didn't want to be present with myself and make myself "normal" I could have a lot of fun.  Luckily, D would look at me throughout the night and not let me feel bad about being real in my head.  He'd ask me, "How are you doing?  What did you do again today?"  As if I hadn't told him maybe ten times already what I did today.  He was allowing me to talk, and to talk about myself.  Fuck I have cancer.  I still cannot believe it.  Me, I have "it".  UnFreakin' unbelievable!!
As I got ready I looked myself in the mirror and looked at my hair and looked at my face and I just cannot believe this.  I put makeup on for the first time since this all happened.  My costume.  Those that know me, know how much I love to dress up in costumes, but this is a different kind.  A kind that only survivor's or newbies like myself understand.  Knowing that I am going out tonight to spruce myself up when all I feel inside is turned upside down.  We got dressed and looked great.  My husband is a terrific dresser and I love that about him.  So we walked out, and I drove down to Fremont.  I wonder if after surgery I will be able to drive?  Will I be able to lift my arm that high on the steering wheel?
Years ago I ate dinner at the restaurant called Cactus with my good friend George.  I loved it.  I told D when I meet him, and is a joke now that I thought this Mexican restaurant was Gourmet.  So whenever we go to or go to leave a Mexican restaurant either of us will say, "That was Gourmet."  Last night was no exception.  We ate at El Camino and I ate my first little free range animal inside an enchilada since this all happened.  I know that I need to start eating Raw and Veggie only for this whole process and for the rest of my life.  My indulgentcies will no longer being a connisseur of bakeries.  No more sugar, not at all.  Oh, I got side tracked, so dinner last night.  Gourmet, definetely.  
There were kids everywhere.  My attention to this was different than my longing to have of the old days.  This was  a very different one and I decided and realized that I am in a mourning stage.  I am grieving.  I am grieving many things that were taken from me twelve days ago.  I just looked and watched all these kids, but this time I also looked at all the parents.  Did they all know what a blessing there little one(s) were.  How lucky they were to have this life?  This chance to hold and squeeze their flesh and blood?  It is all too incredibly painful and I need to go there.  I cannot pretend and swipe these feelings into a corner of the room and hope that I don't have to clean it up.  I have to clean it up.  I have to be present with all of this.  It hurts, this very real 60%-50% chance that I will be needing those eggs.
D has decided to do the embryo thing. Yesterday morning I when I spoke to the new survivor she said that she never went out of menopause.  I told D that, and that is when he said that he has thought about it and he wants to do it.  I looked him straight in the eye, and thanked him.  He said, "I don't want to be responsible for making you unhappy."  At that I told him thank you, and at that I told him that I needed him to think out of respect for me hard.  If I only do an embryo with you and when this is all done and said you decide you do not want to have kids, I am SOL.  So unless you know for certain you want to do this with me, which I'd love more than anything in this world, I need you to tell me.  Because if not, I am going to also freeze my eggs.  He said it was my decision, and I told him no, it is also yours.
So dinner was great fun.  The cutest baby in the whole restaurant was about 7 inches from me and D cracked a joke.  He said he'd been thinking yesterday that if we do have a baby that way he could tell the little guy (I want twin boys super bad), " You've been costing me money before you were born."  As a joke.  I thought it was funny.  Funny too, because I think he is allowing (is this wishful thinking) himself to mourn as well.  Looking at the very real possibility that our kids will be made in a petri dish.  That is sad, but as my good friend yesterday said, Its an incredible science and that she is lucky to have the chance make her a mom, as they've started trying in this way.
At dinner I said to D that its amazing how when I talk to all these young survivor's they are filled with so much love and strength and courage towards me and fill me up in a way that I need so deeply now.  I feel like my little hummingbird in me is drinking that sugary mixture in a little red drinking dish.  I just drink it up.  I told him I had always regretted not going to college and belonging to a sorority.  And now, I do.  There is a love that is so deep and I have never seen their faces.  Amazing, because right now I really need that.  I haven't told all of you.  But this battle is huge, and I feel like do I have the strength to pull through this?  Whatever "this" will be?  My unknown "hard" journey ahead, how hard will it be?  Okay, we all "know" I have the strength, but I am talking to the shocked selves inside, and all that know me are shocked.  And for that shocked part, there is a realization.  None of us are exempt from getting cancer.  And none of us are exempt from having those same cells that went haywire, not do what they are supposed to do with all this treatment.  And so I am scared a little.  
I guess it might kindof in a horrible comparison, I know be like going off to war.  I am still at home making sure I have all my guns and such.  I have trained my whole life for this.  I know what I need to eat and I know what I need to think, and how I should be thinking.  But I don't know how my mind and body is going to react if I get blindsided my a grenade.  No one does.  So, when I talk to these survivor's I am filled with a magick potion.  A potion that I think only they and I can see.  These women give me so much added strength that I know I can and will make it.  They made it, so can I.  GGRRRR....Go woman of Cancer!  My little damn new sorority.  I love it.
Today and yesterday I am filling my time with busy stuff.  I finally attacked our 2007 taxes and got them done.  Tomorrow we are going to Chuck Close's exhibit at the Tacoma Art Museum.  I can't wait to have my mind blown in a different way.

Friday, June 13, 2008

Not a pocket full of posies

I am pissed this morning.  As I lay in bed under my fuzzy flannel sheets, I started thinking about breast feeding.  I have to.  Just incase you guys didn't get this earlier, I have wanted to be a mom badly, I mean badly my whole life.  When I was a little girl I babysat for anyone in my neighborhood.  My doll collection that I still have were my little babies and I often would pretend I was breast feeding them right along my mother's side, as she fed my brother. 
Thoughts came to my head as I was under the sheets and I started getting so mad.  I understand that anger is a base emotion, and I understand that it is my sadness that is fueling it right now.  But if that gene comes back positive and I choose out of sheer statistics to remove my breasts (which is the no brainer choice for MY body, maybe not yours but for mine) and  I don't get a chance to nurture a young one in this way, oh.  Watch out.  I am going to loose my mind.  I mean it, loose it.  All the things that I have read for years will no longer be possible for me.
I won't be able to give birth and put my baby to my breast and feed the little tiger.  I won't be able to feel the benefits of oxytocin being released through my body and getting the baby high from nursing.  I won't be able to walk around with a pad in my bra because of the "let down" reaction.  I won't feel a "let down".  I won't be in the kitchen making muffins and hear my baby cry and have my breast start pumping that milk.  I won't have the accidental let down in public if I hear another baby cry.  Do you wonder if I really meant it now when I say, " All I've thought about is having a baby."  I could be crying over nothing, maybe I won't have that gene.  I hope the Genetic Counselor is right this time around, and the other Doc's are wrong.  That would be nice.  I wonder if I will be able to breast feed with the breast that has cancer in it if I just do the lumpectomy?  That sounds like from my ignorance a bad thing.  Like a dirty thing that I wouldn't want my precious little one to be near.  My breast that had cancer in it.  Would there be a transfer of any little particles in the tiniest amount at all??  Not that this is shrouding in the tiniest amount my decision to either do or not do a mastectomy.  Because right now I haven't been faced with the genetic answers yet.  
As I take in a deep breath, I am breathing in the sun's rays deep into my body and breathing out all this sadness and I am going to go through my day staying in the present moment.  All of these fears can stay here.  In Wonka Land, up in the " TV Mikey" room of space in the sky.  For those of you that haven't watched Willy Wonka as obsessively as I have in my life (maybe 200 times) you have a fun movie to watch tonight!    

Thursday, June 12, 2008

A basket full of decisions

I talked to my dad today about the decision I need to make about freezing my eggs.  He reminded me that the 40-60% chance that my kids, if I carry the genetic gene would as well if they got it, then have a smaller percentage from that number if they actually got it.  So...I have decided I am going to do it as I am not delaying my treatment.  Even if I was, the surgeon today said that biologically it wouldn't do a thing to my cancer, waiting a few weeks.  Emotionally it is an intense place to be, if I went there.  But I am not going to because I have to stay in the present moment and be still with my decisions.  
Tonight I spoke with my Oncologist.  He is an amazing man and he said that he has been working on compiling the numbers that would help someone like me answer my question.  The one in the earlier post, am I the 75% of the 10% since I am a Triple Negative?  He said there are no stats for this yet, and to go back to the known big number.  Leaving me at 10%, which is only a 9% difference.  The short term recurrence rate is 10% if I do the lumpectomy but long term success rate is the exact thing.  I am pretty sure I am going to go for the lumpectomy because I can always go to the mastectomy if the caner returns.  I have a 90 % chance that it won't.  D posed a question to me today.  If the cancer was in my leg with the exact same sats what would I do?  I didn't have to think, I'd keep the leg.  My surgery is scheduled for July 1st.  I have a few weeks to decide.  

Deal or No Deal Seriously

Met with the Surgeon today.  He helped calm me down with a few key questions and statistics.  I asked how soon after I get my mastectomy can I get my reconstruction done.  He said, "What is your goal?"  I said, "To Live."  Well then, if your goal is to live and if you were my daughter I would suggest not waiting for the whole process of getting reconstructive surgery, (its a whole process, unlike fake boobs) and start with your treatment.  I am wanting to give myself the best odds, and that is to kill this cancer as soon as I can.  He said because I am thin, reconstructive surgery is going to be a bit of a challenge.  I will have to cross that bridge when I come to that.  
He told me that Since I am so Young and Since its a Triple Negative I have (D and I again remember different numbers here, funny what stress does to our brains, we need to remember to bring a tape recorder) a 10-30% chance of me developing breast cancer a second time if I do a Lumpectomy.  I quoted the first surgeon's statement, "There is 30 years of research showing there is no difference in survival rates if I get a lumpectomy vs. a mastectomy."  He said that he disagrees with that as it really boils down to A Quality Of Life issue.  If I want to have the lumpectomy and risk getting it back and fighting this thing again I gave you my chances above. If I get a mastectomy I have a 1 % chance of getting cancer again.  
This is a no brainer, I am taking the deal of Mastectomy.  If my cancer was one of the other 3 that feed on things that they know about and if they could give me whatever drug to decrease my chances of getting it again, I would take that Lumpectomy.  But I am not going to risk this again.  If two months ago, someone said, "If you go down this road you have a 10-30% chance of getting it, heck even a 10% chance of getting breast cancer, and if you go down this road you have a 1% chance."  What road would you choose?  I choose to stick to the road that is going to insure my life for the next 55 years.  I am so young, and there is so much ahead of me that I have a larger amount of time that this could come back vs. a woman getting this in her 50's.  
Hard questions that I can only answer.  I am the one who will have quality of life issues, dealing with the pain of tighter tissue and restricted movement due to this surgery.  And if I go under, and they do find more and the tumor is bigger and more nodes are involved than expected, I would be getting the mastectomy anyways.  My Oncologist is going to call me tonight and talk with me about all of this.  I am interested to hear what he thinks.  Can you believe I am getting to deal with this?  Amazing.  The Why's are all around and I am ignoring them.    


Okay I just spoke with my Surgeon.  It is a 10 % recurrence rate for the lumpectomy without the gene bit.  Those numbers are high, much higher and I could be freaking out over nothing and warping my brain about things that will not matter.  But I need to weigh this all, and need to decide before surgery.  If I do the lumpectomy or the mastectomy either way I am going to be watched like a hawk for the next 5 years or so.  If a second cancer does appear they will catch it very early and then off with that boob!  What my surgeon did say is that he is concerned that I am under the age of 35 and that it is a Triple Negative.  
I have a question for my Oncologist now since he works closely with young woman with Triple Negative.  What I need to know is from that 10% (guys I got a D in Alegbra 2 with a tutor) you get the four sub-groups, the feeders on Progesterone, Estrogene, Her2Nu, and my lucky devil Triple Negative.  What are the rates of recurrence with women UNDER 35 and that have the Triple Negative?  Are we 75% of that 10%?  Phew...Right now I am leaning towards the lumpectomy.
If I get the lumpectomy and during surgery if they find more nodes than one that is cancerous the Surgeon said it does not changed my recurrence rate.  It isn't higher.  This is why I do Chemo and radiation.  The lumpectomy will allow me to be a better athlete, a massage therapist, and allow me to be closer to the person I am now.  I love to go snowboarding, ect.. Although I am not sure if I will be able to do that, if I fall will it cause me to have lifetime lymphadema?  I asked the Surgeon how will he know if he got all the cancerous nodes out, he said that he wouldn't know for sure, and this is again why I do chemo and radiation.  Another interesting thing he said is choosing a mastectomy gives me control with what I can have control with.  It is bringing my recurrence rate down to 1%.


Wednesday, June 11, 2008

All too fast and painful

Have any of you watched Deal or No Deal?  If not, it's a game show that people have the chance to try to win a million dollars.  I like to watch this show because right before your eyes you get to see someone forgo a whopping $200,000- $300,000 in hope that they get the million bucks. I am always screaming at the TV, "Take the Deal!!"  Seriously, they walk in with zero bucks and they could walk out with a nice little chunk.  I am not that much of a risk taker.
I am a risk taker that likes to jump off of bridges into a known natural swimming pool.  This "known" is the key.  I wouldn't do that if other people hadn't, and the older I get these risks are getting fewer and farer between.  This is the exact thing we, D and I are dealing with this morning. Fertility.  As most of you know, D has been trying to figure out if he wants to have kids and with all of this he has moved to a closer place of possibly wanting them.  I totally respect his decision either way. I have to.  I am not one of those woman that would poke a whole in a condom and say, "oops."  So today we got a call from the fertility nurse.  We, D and I didn't know that there are two types of freezing eggs/sperm.  In fact I didn't know the sperm was even an option.  D is supportive of me freezing my eggs, if I feel that I have to do that.  It's my body.
He is just not into freezing our embryo's, at least in the, "right now you have to decide because we have to move on this as my cancer treatment has to move forward, right now."  This is the deal.  My Oncologist says that some of the women my age return from Menopause, if the chemo forces them into it.  D's point is that this is all IF's.  IF I go into menopause, if I don't go out of menopause, and if, if.  This is all too much, too soon for him.  A month ago he was dead set on not wanting kids, with the not for sure still being tossed around.  Now, he realizes that he may and so he has to decide now.  Now if he wants to risk not getting to have a biological son/daughter with me, if I am unable to due to my treatments.  My Dad says just pull back, just freeze your eggs.  If I just freeze my eggs it is a 20% chance that they will be able to make an embryo when we are ready.  Since eggs are so fragile, this is not the greatest of odds.  If we freeze an embryo the chances go to 60% that we would be successful, they aren't as fragile.  This just sucks.  I need to be focusing on getting well and not on wether or not I am going to be able to have kids in the future.  It is so much all at once.  I have a call into the Oncologist.  We need the stats.  
D is a numbers guy and we need to know, do all the young woman my Doc works with go out of menopause/return to normal? If so, then are we worrying over nothing?  But if there are woman that don't return to normal, then I will just be freezing my eggs, and not our embryo.  D said, it is just wrong, just not natural.  My point is that none of this is natural.  If I wasn't going to do the super science of Chemo (very unnatural) I would probably be dead in the next few years. We are all dealing with this news of my having cancer the best we can and as fast we can, and dealing with all the unknown's the best we can.    There is only so much both D and I can move through in a matter of a week.  
Last night on Oprah an incredilbe man said that roadblocks aren't for stopping us, they are put in our lives to help us see how much we want something.  This is one of those times.  


I just got back from the gym.  While I was on the treadmill my athlete rose inside me again, and shared this story with me.  Even though I fell overboard in a huge stormy sea, the team (you guys and D) threw me a dingy.  Right now I am swimming towards that dingy and getting hit in the face and gulping air and fighting for my life, fighting to get to that damn dingy.  I know I am going to make it and I know that I am going to paddle to the big boat with all of my loved ones. While I am getting back to all of you, and D, you're going to be cheering me on, and wiping the tears off my face.   But I am the one who is in the Sea and Dingy named Breast Cancer.  I am the only one that is going to be a Survivor and if all I have once I get on board is that 20% to have kids, I am going to take it.  So, regardless I've decided to get my eggs frozen.  The embryo thing is intense.  D even said, "I'm surprised you want to do it."  Funny how when your are faced with severe options our choices become at times wider than we'd ever imagined.  And D isn't in the sea with me, and if I go to his side of things I do totally understand how "icky" or "wrong" freezing our unborn, pre-fetus, embryo's this option is.  
So, I've got that 20% and I am going to take it because that is what I have to do.  End of story.  I am not going to let cancer potentially take what I value the most in life.  I refuse.  I am going and will be a mother someday.  I want nothing more.  Nothing more.


I've been waiting to post this to my blog till I talk to my doctor, he should call sometime this evening.  I spoke with a young survivor today, who got breast cancer when she was 30.  Funny how she was sent my way today because she is one of those woman that didn't go back from menopause.  She wasn't able to freeze eggs, and later in her life, she met the man of her dreams and got married and they adopted a little girl.  She made a few good points to me, points that in my franticness of the moment tried overlooking.  One of the main points is this, to be able to do the egg retrieval they need to wait till my second day of my next moon.  Which I just finished, so I am out for a month already.  At which point they will give me estrogen or progesterone or both, I can't remember right now.  For two to three weeks I am on those med's and then they can start doing the egg retrieval.  So this whole fertility trying to get my egg thing is pushing my VERY needed cancer treatment out for about two months.  This is what does not sound good to me. 
The other point she made is that cancer feeds off of something.  Like I said in earlier posts. My Triple Negative feeds off of something they just don't know what.  If my body is pumped full of these hormones, which cancer usually feeds on am I increasing my chances of giving my cancer a party?  A party that wants to go visit all of its neighbors, like my ovaries?  No Doctor is going to be able to say yes or no to this.  There is not enough information about Triple Negative yet.  
My new cancer survivor friend also said, " You have to remember, you are the most important thing right now.  Getting you cancer free as soon as possible.  Getting you healthy."  I cannot agree with her more.  Since I have such an aggressive form of cancer, is it worth waiting?  What if my fight is super hard, super super hard.  What if in the back of my mind did we wish that I hadn't waited to start treatment.  We know it is in my lymph node(s) so speed is important, right.  Get it done.  Like yesterday!  Or am I just trying to talk myself out of this?  The woman I spoke with today also said a great thing," Don't you want to know what your chances are when you do beat this, for you to be able to conceive a baby naturally?"  The other thing is if we wait 3 weeks to get the genetic tests back, and If (oh, the freakin' if's) I am positive for one of the whopper's do I want to inflict that 50-60% chance on my kids of them getting breast cancer?  That is something I do not even for a second have to think about that is a no.  
So, I am left, waiting for my Oncologist to call and spew this all out to him.  He will wait and do whatever I want.  This is my game I am playing.  My Deal or No Deal.  If I didn't want Chemo, he would say okay.  But I do want chemo and I do want my own kids, but this waiting to be treated thing is also something I do not want to do.  There is too much empty time filling up and allowing my precious healthy cells in my body to be sabotaged by those evil little sick cancer cells.  I am exhausted, yes.  I feel like today was the worst day I've had except the day I found out I have breast cancer.  I am playing God, and I am asking my husband to play God too. It is so wrong.  I am starting to look at this whole thing as, look this is in the hands of something greater than I.  If I am meant to have my own kids, I will be able to snap out of the Menopause and have my own kids.  If not, I have friends that adopted two beautiful little girls and I know they couldn't be more loved or love than they do.  I think I've come to my answer.  I'll wait to talk to my Doctor.


My Doctor just called. He said one thing that just put it all to rest, if one of you doesn't want to do it, move forward.  
He also told me that no one is going to treat me with this fertility thing until we have my pathology.  We won't get this until surgery, and then we will have to wait a week or so to get my results.  If the cancer has moved to many nodes and if its a super nasty tumor, he very well may suggest that we not delay treatment.  Which couldn't start until I heal from my surgery.  If its just in a node and not a nasty tumor than he said he may say I have the six weeks it will take to get my eggs.  He also said that there are no stats available, and if someone tries to tell me otherwise they are simply not true.  There is absolutely no way to have stats that prove if someone hadn't delayed treatment six weeks if their outcome was better or if the hormones they pumped me with did anything to the cancer.  
He told me to wait until after surgery and we will all know more then.  I did ask him what my chances of being able to bear my own kids when done with chemo, not great.  They are 40 to 50%.  Chemotherapy is so toxic.  Crazy, thanks for going through this with me.  Today was the worst day, maybe more than getting cancer.  I have officially had the most precious thing for me possibly being taken from me.  


Tuesday, June 10, 2008

Genes and not much more..

Today was my genetics appointment with the Genetics Counselor Robert Resta, or as he suggested Your Majesty.  Great guy, D and I loved talking with him.  He thinks that I do not have any of the genes that caused this cancer. He said that one week he is right the other week my Oncologist is right.  It is such a new science that they are learning new things each day and sometimes they just don't have any answers for you.  Unless you have one of six known genes.  He is certain I do not have four of the genes.  That leaves BRCA 1 and BRCA 2.  The test will take between two and three weeks to get the results.  I know, everyone is wondering if this cancer is so aggressive why haven't I had surgery yet.  Well, we needed to get the results from last week and this week.  My appointment with my Surgeon is on Thursday, he is coming in before hours to meet with us as he is slammed.  We'll be crossing the bridge over to Bellevue around 6 A.M.  
The thing is is that me getting cancer at age 33 is uncommon but this is starting to happen more or more.  Or the Doc's are just starting to look for it and are catching it more and more. Plus I am a Triple Negative so this points towards a gene, or a mutated gene so I betcha the Surgeon will want to wait to get my results.  I hope not, but who know's.  I am in the best hands in this city, and am putting their suggestions in their hands.  Whatever they tell me to do, I am going to do.  The cancer has probably been in my body for a while, and waiting two more weeks to make sure I do not have the BRCA's is a good idea.  No need to have one surgery and then have to go back in and have another breast removed.  Plus, I am totally speculating that my right breast will need to be taken off.  It is just moving in that direction.  I will know more on Thursday. 
 I also got an Eccho Cardio Gram done today.  I think that is what it is called.  It's an ultrasound of my heart.  It enababled the Doc's to know if I have a heart murmur, (I don't think I have one) and it also gives my Doc's a base line.  This might be because some Chemo treatments are hard on the heart. If my treatment does get hard on my heart they will be able compare my heart to pre-chemo to make sure I am okay.  I am just going through the days now.  Like a little ant.  I have a specific trail that I have to follow home and I am now done with this bit of testing!! Yeah!!

Monday, June 9, 2008

Don't make that face..

When I was a kid, one of my favorite books was about this kid that used to make the most horrid faces imaginable.  But one day, much like today (as its terribly windy here) the wind changed and his face wasn't able to change back to normal.  I kind of felt like that today.  
D said a very sweet thing to me this morning, after my sister left.  He said, " I want our old lives back."  Simple.  Cutting.  Sweet, and Painful. " Yeah, maybe in a year," I said.  I think both of us know that our lives will never be the same.  I felt the life in me fill my heart today so I got dressed and went to my office and finished some paperwork on a few of the houses I'd just sold.  Walking into my office I got a hug from everyone and tried to not to cry.  Looking and listening to everyone working hard on their houses, I felt a little jealous.  I just cannot believe that I am on hold.  I'm on hold because despite what most people think, Realtors work their butts off and it is an incredibly stressful job.  A job that I knew I wouldn't be able to give my 110% to. 
I got to do my first massage today since we got the news.  I like to think of my massage practice as my walking mediation practice.  It felt so good to focus on someone else's body for a while.  A body that is in good health, a body that is working the way it should.  How is it that none of my Doctors found this lump in the past few years, or in my last exam four months ago?How is it that I was overlooked?  My Oncologist says its because most Doctors will never see cancer in younger woman in their entire careers, so they don't think out of the box when doing exams.  They just don't think its possible.
I got a manicure today.  The ladies all know my name, as I walk in they say, "Hello, Heather."  They asked me how I was, and I explained that I had breast cancer.  I told her I was 33, and she said, "Me too."  Quickly, they bantered back and forth and she explained to them all, in another language, one that I don't know, that I had breast cancer.  I told them next time I see them, I might not have hair.  How crazy is that.  "Your hair is so beautiful, are you sad?"  
I am sad, and sure my ego is sad and threatened that it will loose these locks.  Will I just go bald? Maybe I'll wear a scarf and a hat.  When my sister was here she told me that five years ago, she got fourteen inches cut off her hair for Locks of Love.  The biggest surprise was that she had never given it away, that she still had it.  Unbelievable!!  I love it, I actually might be able to have a wig with my sisters hair.  How cool, but do I want a wig?  Isn't the wig, for everyone else?
When my mom was in the nursing home, since she had a stroke at 54, and was paralyzed she didn't ever leave the home.  Eventually she just shaved her head, it was easier to take care of and she had no one to impress.  I wonder what I will do.  At the Oregon Country Fair, one of my favorite summer festivals I used to love to dress up and wear wigs.  I was able to morph into a freer me.  I just don't know about this.  We all know its ego.  I mean really, if I was on a deserted island would I care if I had to shave my head?  If someone left a wig on a rock, would I wear it around?  Yes, the girl in me that likes to dress up would.  And yes, the girl in me that likes to braid my hair might.  I just can't believe I have breast cancer.  It's crazy.
So yes, the wind is blowing and my life has changed and my life is never going to be the same.  That is what I didn't say to D this morning.  That for the better or the worse, my life and his life has changed.  When I get healthy again, and when I go into remission, our lives still have been changed.  The life of waking up in the morning and taking everything for granted is over.  Simply over.  
Today was the day that my Dad and I got to trace all the cancer in our family.  Back to my grandparents on both sides.  Tomorrow morning we are meeting with my Genetic Doctor and will start to learn if I have the genes that pre-dispose me to getting breast cancer.  On my Dad's side only my Nana had it and she had six brother's and sisters.  On my mother's side, my grandma had skin cancer on her face-no big deal- and my grandpa had hand cancer.  Neither died of cancer.  I am hoping I do not have one of the known six genes.  But I kind of wouldn't mind either because at least there could be some kind of blame.  I want to point one of my fingers at something.  D is always saying I have a little detective in me.  I'm that person driving down the road that looks for drunks, or calls 911 when I see a reckless driver.  He always laughs at me, but hey, if I can help the little detective in me loves to do it.  I'd make a great cop.  
Today I was out with all the "normal" people and starting to face the fact that my body is going to change and morph into a new butterfly.  I am a little nervous about it.  End of story.  I am just nervous.  Here comes lots of yoga and meditation and soul searching like my hippie days of the past have never seen.  I get to look square in my eye, an eye that may not have eye lashes for long.