Someone else's words

I've been reading this book called "The Victoria's Secret Catalog never stops coming and other lessons I learned from breast cancer" by Jennie Nash. I"m pretty sure she hangs out in my head because I can relate so well. I love chapter 6. It so sums up how I feel about the whole losing a boob thing. I am further along now than she is in this chapter but none the less I can totally relate to "longing for what I'd lost rather than envy for what I'd never had" So, I thought I would share:

"In the weeks before my mastectomy, in the long pre-Christmas season, the Victoria's Secret catalog never stopped coming. There was some sort of glitch in the mail system - or some special pre-holiday blitz- and I got two or three catalogs in the course of a few weeks, always on the day that I learned that something more-and worse-was going to happen to my breast. There I was, agonizing over the damage about to be done to me, and there they were-all those bare bodies, all those beautiful, smooth, and perfectly balanced breasts, all those pretty pieces of underwear designed to show them off.

It's easy enough to cancel a catalog-at least in theory. But if it wasn't the Victoreia's Secret catalog coming in the mailbox, it was thier models featured in the Sports Illustrated swimsuit issue, Tyra Banks in a tiny red bikinin on the cover of GQ, or the now-famous Victoria's Secret Web site ad in the middle of the Super Bowl. Idealized breasts were everywhere I turned and I couldn't help but stare.

I tried to make myself go back to the stacks of breast cancer guidebooks to look at the unlit and unposed photos of women before and after their surgeries, but now that a question of mastectomy wasn't philosophical, I didn't want to see those pictures The women they featured were not beautiful. They had cellulite on their tummies and fat on their arms, thin little rib cages and fleshy middles with angry red scars snaking across the skin. They had pendulous breasts and little pointy breast, huge-nippled breasts and dimpled breasts, breasts that were dented and cut and mashed and removed. Every one of the pictures made me turn my head as if I had been slapped.

"You're going about this all wrong," Lori insisted on one of the many afternoons she sat with me at my kitchen table so I wouldn't have to sit there alone. "These are hilarious. Look at this one," she said, pointing to a woman with droopy breasts. "She probably breast-fed about ten kids. And this one?" she said, picking out a woman with large dark circles around her nipples. "Perfect for target practice." I couldn't help but laugh at Lori's loopy sense of humor and was filled with gratitude for her willingness to say anything that had to be said.

"What's so funny?" Carlyn asked, suddenly appearing at my side.
"Nothing," I said, snapping the book shut.
"What?" she pressed.
"It's none of your business," Lori said.
This of course, drew the whole crowd of kids in the house-Carlyn and Emily and Lori's kids, Kimber and Sarah. "We want to see! We want to see!" the chanted.
"No way!" we chanted back. We owned those pages now, and we needed them. One of those surgeries was going to be the one I picked.

~

A few nights later Rob and I were back in the backyard hot tub.
"So do you think I should get breasts like Tyra's?" I asked-because what was I going to say: Will you still love me when I lose my breast? Will you still touch me? It's dark out there in the warm water, and you can say almost anything that has to be said-but there are something things even the darkness can't hold.
"They're nice on her, but on you? I don't think so," he said.
"You mean you wouldn't like it?"
"Sure I'd like it, but that's not why we have great sex," he said.
"They're kind of a critical component," I countered.
He shook his head. "I don't think so. I mean, what's great when we have sex?"
"Your smell, the mood, what you do," I blurted.
"Not breasts," he said, like a lawyer making a closing argument.
"That's easy for you to say- and it's also not what you said before this was a reality."
"That's not fair," Rob snapped.
The breeze blew; the fog rolled in over our heads.
After a moment, he asked, "What makes it hard for you?"

I took a breath and cataloged the things about my breast that I would miss: the sensation of having my kids lean up against me when we read books at night; the feeling of pressing against another person when I give them a hug; the pride I have that these breasts did a good job at what they were intended to do; the warm and comforting feeling of Rob's hands on them: the way the nipples respond to his touch: the exact shape, wight, and balance of them; the fact that they are mine. I stopped to breathe. Rob sat unmoving across from me-frozen as if we were sitting in ice.
"I never thought about half those things," Rob said quietly.
I looked out at the night, dry-eyed and grief-stricken.
"We don't need your breast," he said. "We'll get used to it."

He moved behind me and cupped his hands around me the way I like. It could have been any night, but it was one of our last nights, and all I could think about was what it would feel like not to feel that feeling and what it would be like to thumb through the Victoria's Secret catalog, the next time it came, with longing for what I'd lost rather than envy for what I'd never had.

Test Results

I know we all could use some good news so I'm so happy to have some to share!


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I had my follow up appt today and they took the drain tubes out I am so glad to be rid of those!
I also got the test results back and all the margins were clear and it had NOT spread to the lymph nodes So that means that they got all the cancer out and it hasn't spread anywhere else!

As far as staging, It is stage 2 - technically, for those of you who care or know what it means, I am a T3N0M0. For those of you who now what to know what that means :)
T3= The cancer is more than 5cm in diameter
N0= The cancer has not spread to the lymph nodes
M0= No distant cancer spread

So the next step is oncology treatments. I am still waiting for the consult to oncology - they are super backed up so I will probably be referred to a cancer clinic somewhere outside the VA - which is also a good thing - I'm happy to go somewhere that specializes in that - not that the VA doesn't (they do have a primary oncology clinic at the VA)

The Dr today said that they will probably be aggressive in the treatment because I am so young - so I am curious as to what oncology recommends for me treatment wise.
Earlier this week we were at the pharmacy picking up a prescription for Gryphyn (3rd round for this double ear infection :( ) and it was super late so we were talking to the pharmacist. The whole cancer thing came up and she said that her mom had cancer and that she had told her NOT to get chemo unless it was a life or death choice - she explained that chemo is so bad for you body - yes it kills the cancer but it also attacks so many good things in your body as well. You can only have a certain amount in your body because it makes you toxic. Once you get it you can never do it again. So if I choose to do chemo now and the cancer does come back, I'm screwed I can't do chemo again. So I'm really considering NOT doing it now. I don't have all the facts yet but from what I have heard, I am thinking of just doing radiation and an estrogen blocker. The more estrogen you have in your body the higher your risk for cancer - so the less you have the better.



So, yea! for good news finally

Christmas Photos

I have been waiting to post till I had more info from my drs and I also wanted to add some pictures since the last few posts have just been long posts about me.  With all the hectic holiday-ness, I just got around to editing some photos the other day.  These are for my mom who doesn't have a computer.  Every now and then I will sit down and get a bunch ready to print off and mail to her - honestly who does that anymore :)  LOL  Gotta love technology!  

Some of these Zac posted on his blog already - He loves sharing pix of the men so when he got some new ones, he couldn't help but show them off even though, they were suppose to be our christmas pictures  (Oh yeah) That okay, since he put them out there before I had a chance to do cards with them, I got him to take some more.  Last night we braved the cold and walked all the way across the street and were able to get some more - which turned out even better than the first set so,  "THOSE" will be our Christmas - or probably at this point New Year cards.  Stay tuned for those to come soon!

This is one of my favorite photos of the men and I :


Gryphyn - YES he is pretty much wild and crazy all the time :)  


Vahn- aka : Mr Smalls -  


As for me,I am doing good - I'm up and around and my friends i've seen say that I look great! This past monday, I went to a prosthetic place and got a camisole type shirt with a pocket that you can "stuff" to look like a breast. It makes me look more balanced which is nice. It also has a place to hold my drain tubes - so it is much more comfortable to wear. The drains are actually the most annoying and painful part - they go under the skin and are stitched in place. They are starting to get scabs around them and hurt if they get moved at all. I can't wait to get them taken out. As far as other pain, I am down to 2 pain pills a day. I hurt the most when I wake up - I think from not moving all night and again before bed. During the day it isn't too bad if I don't try to do too much and the men don't crawl all over me. Other wise It sort of feels more like sore muscles during the day which isn't too bad.

> 
> I am still waiting to hear back about the test results for staging and further treatment. I have a follow up appt tomorrow the 23rd so I should know more then. I meet with the main surgeon Dr Lee -who has been there for all my procedures but I never met - actually he came to see me this time when I was in recovery. I'm not sure I will know anything yet about if I have to do chemo or not since I was told that oncology will make that call but they will tell me the results of the test to see if it has spread to the lymph nodes.   So more updates tomorrow or the next day when I know more.  

Back Home

So, if you haven't heard yet, all went well with my surgery - Here is what I can remember of the past few days:

We got to the hospital at 6am and waited about 30min before they came to get us (so totally could have slept in)  They took us back to a little dressing room where I changed into a hospital gown and bagged up all my clothes to be put in a locker - then they came and got me and took be to the pre-op area.  Got me all set up in a bed and asked me a bunch of questions, took my vitals etc -  then zac kissed me goodbye and they took me off to see anesthesia.  

Once there, they got me all hooked up with an IV and gave me something to help me relax.  Then they realized that they didn't have a current pregnancy test on me.  Such a pain - they did one the day before during my pre-op appt but when I went to have my chest x-ray, the  results weren't back yet so they x-ray tech called the lab who said that it had been cancelled - so I just told her verbally that I wasn't preg and we went with that - but before surgery, they had to be sure - so they wanted me to give them a pee sample - of course I couldn't get up to try because they had already given me something by iv -so I got a bed pan instead -  yea right! Of course I couldn't go it - you try to lie down and purposely pee in bed - You lose that ability around 4 I think :)  So meanwhile, they figure out that they need a blood test anyway so they drew that and checked that way - we had to wait about 30min for that results big shock, it came back negative.  So then it was off to surgery - I got a cool little hat and they switched me to the operating table and immediately I was surrounded by people all doing their job and given oxygen and more drugs which quickly had me drifting off to la la land.  

When I came too - I was missing a boob - what the?! - Oh wait they were suppose to take that.  I was still pretty out of it and nauseous - not as bad as the last operation - but still not much fun. I didn't actually puke until they gave me a pill to settle my stomach.  Go figure.  They quickly got me all set up in a room and gave me pain med by IV.   The pain hasn't been too bad - it was more of the headache and nausiou that was getting to me.  I had two roommates who both had their TV's on so I kept my curtains closed to try and block out the light and tired to sleep as much as possible.  Zac stayed with me most of the afternoon editing pictures while I slept.  He went to get mom and the kids later that night and my boss Tina and my friend Sabrina came to see me and brought me flowers and balloons - I was sort of out of it - but it totally made my day - It is a rule that if you have to be in the hospital, you get flowers and balloons :)  Thanks guys!  

Shortly after that, Mom, Zac and the Men arrived.  Gryphyn wanted to know what everything was and mostly wanted to run around and check out stuff.  Vahn immediately climbed up in my lap and gave me a hug - such a sweetie.  They didn't stay long since it was bed time for them and I was drifting as well.  I had waited to get some pain med till right before they got there because my nurse said it would make me sleepy and I wanted to be awake to see them.  So after everyone left, I tried to lay down and realized that the pain was still the same and I couldn't sleep - so she gave me some different stuff and I was soon out.  However that didn't last long - due to the constant IV fluid I was getting, I woke up every hour all night long to pee.  So annoying!  Around 3am I was up peeing again and my nurse was making her rounds, I told her I was starving - they hadn't given me any dinner since I was so nausous before - so the nurse got me some animal crackers and some milk then said that they had just had a christmas party and there was a tray of left over meat, cheese and fruit if I would like any of that - so she made me a plate - I ate some of that and drank my milk and juice - when she came back to check on me she said "good news - you have kept down enough fluid orally that we can take your iv off - so you won't have to get up so often to pee"  So then I went back to sleep and got a whole 2hrs in until that came around to check vitals and stuff. - so over all, it wasn't a very restful night.  

This morning, I had a bunch of staff come in and see me, my dr, the main dr, nurses, techs, social worker, high school students (taking vitals) and my pastor Kevin came to see me - I sort of drifted in and out all morning.  I didn't really find out much info yet, they will call me with the test results in about a week, I have a follow up appt on the 23rd, Skland Prosthetics will contact us about a fake boob and I will be getting a letter to fee base (meaning the VA will pay for it) to the Cancer Center - so for now, I just take my drugs and rest.  I don't have any restrictions as far as lifting or moving - I'm not allowed to drive while I'm taking pain meds and I can take the bandages off and shower starting tomorrow.

So, I think that is everything - Thank you to everyone who has been there for me - your prayers and support mean the world to my family and I.  :)

Just for fun!

Surgery

So much has happened so fast that I can't keep up with who I've told what to.  So, here is all the latest info:

On Monday (Dec 1st)  I paged my dr about getting an MRI and a different dr answered and said that she had taken over for him - she reviewed my info and called me back and wanted to see me to talk in person. So, the next day (Tue Dec 2nd), I met with plastic surgery and then with her - it was a long day with lots of info and questions and decisions - It left me exhausted mentally and physically! 

Here is what we decided 

- Next week (Dec 9th) I will have a modified radical mastectomy (on my left side) - this removes all the breast tissue except for the skin - they do remove an oval shaped portion including the nipple and then they will sew the skin back together (sort of like a football). They will also remove lymph nodes from my arm pit area to test and insert a drain to make sure I don't have any blood or fluid build up. About a week later, they will remove the drain and I should also be getting my test results back to determine the staging and how to proceed from there. At this point, I will be referred to oncology and they will make the decision on the chemo and radiation treatments. Once radiation is completed (about 6-12 months out) I will go back for the breast reconstruction. After talking with plastic surgery, we feel that it would be best to wait to do the reconstruction. They said that I would have better results if I waited till after radiation treatments. Radiation destroys tissue and that isn't a good thing for "new" healing tissue - they said they would do it now but most likely I would have to have further surgeries to repair and "fine tune" the breast - so, not what I wanted to hear - I don't really want to be breast-less for up to a year but what do you do - its the best option for the most realistic outcome. We did decide to go with the tummy tuck method over implants - so at least I have on good thing to look forward to :) -  we have time to figure out all those details later.   

Other questions I have been asked - and the answers :)

Are you positive you know what type of cancer it is? 
Dr Turner (my 1st dr) made them double check there findings so yes - when I spoke with Dr Diesen (the new dr), she said that it was invasive ductal carcinoma - which means that it started in the duct and moved beyond them. The section that they took was 2cm and tested negative on the top but the bottom was positive to the edge meaning that they didn't not get all of it out. She also said that the surrounding area was precancerous -meaning that if  I left alone, it would become cancer.

Do you know what stage its in?
NO - and they won't know until they remove the lymph nodes. Staging is based on 3 factors - the T (tumor), N (node), and M (metastasis) - currently the T is a T2 which means the mass is larger than 2cm but not larger than 5cm. The N, is whether or not the tumor has spread to the lymph nodes - which they will removed to test during the surgery. The last factor the M -which is if the cancer has metastasized to other parts of the body - again the lymph nodes would tell them this. If the lymph nodes come back negative for cancer then it has NOT spread anywhere else - they always go there first. So if they test positive, then they will do additional tests to see where. I forget the order they "drain" to but the cancer could spread to the brain, liver, lungs, and bones. All of these would not be treated with surgery but with chemo and radiation - so that doesn't change the surgery aspect either way - as for the other breast, they already know it doesn't have cancer in it because the mammogram shows that it doesn't. 

Can you positively say its nowhere else in your body?
NO, not yet until we get the lymph node testing back.

Why did you get it? What caused it? Was it job related? Hormones? Bad Genes? Hereditary?
No one knows the answer to this one. I don't have any risk factors that would be an indication that I was a risk for cancer:

You can check out the following link for a list of the risk factors:
http://www.cancer.org/docroot/CRI/content/CRI_2_4_2X_What_are_the_risk_factors_for_breast_cancer_5.asp

Was the lab wrong?
Always possibe but he dr DID have them double check the results because he didn't think it was possible based on factors and what he saw and felt.

Was a proper cancer biopsy done?
Partly yes - they should have removed a larger section as well as lymph nodes - had they know it was cancer.  I could go back and have the larger portion and lymph nodes removed and tested then have additional surgery as needed - but essentially, that is what we are doing in the mastectomy (at least I know they will be getting it all) :)

Emotionally, how am I doing?

SIGH - I'm a mess - I think - I'm not really sure on this - all I want to do is sleep and cry, neither of which I have time to do.  Two little men require all my time and energy so I have to be there for them.  So, I'm just kind of ignoring everything else.  I really don't want to lose a boob, I think it will make me feel less of a woman.  I already have enough self conscious issues I don't really need this added on top of it.  I don't want to be "helpless"  I'm really bad and asking for help and letting anyone do things for me.  I'm tired of people telling Zac that he is going to have to step up and be my crutch.  I hate that he feels like he is going to have to quit his photography (which he loves) and get a traditional job.  It breaks my heart that I can't pick up my kids - they don't get that mommy is sick and it hurts to hold them.  I so don't want to be - see now I'm crying - enough of that!

I am so thankful that my MIL - Ann is willing and able to come out and help.  She gets here tomorrow and will be staying for a month.  We don't see eye to eye on everything but I know she loves me and my MEN and always has our best interest in mind.  We have always had a good relationship which isn't common in Mother and Daughter in laws :)  I am truly blessed that I got Ann as mine!

I am also thankful for all my friends who have been there for me.  My church - Underground (http://www.ug-3.com/connect.htm) is already putting together meals for us and countless people have offered to help however they can - childcare, cleaning , hanging out etc...

God has truly blessed me with family and friends that love me  -  I have every intention of beating this dumb cancer and living a long healthy life!

I don't need a new hobby!

I told Zac recently  that I don't need a new hobby!  It seems that all my free time is devoted to cancer now.  All I do is talk to people about cancer, search online for cancer stuff, and today I even went to the library and got some book - guess what subject - YEP cancer! "Sigh"  

I so want to just crawl into bed, pull the covers over my head and make this all go away.  Unfortunately, its not going away so I have to do what I can to become informed and fight this!

I am still at such a loss as to what to ask the drs.  Its like being stuck in a foreign country where you don't speak the language.  

What?  HUH?  Uhhh - No habla cancera!?!?!

What should I be doing right now?  How do I  ensure that the decisions that I make now are the best ones to ensure we don't have to go thru all this again in a few years?  Will I still feel feminine with fake boobs? 

I obviously don't "WANT" to lose my boobs - I am a girl after all.  But at the same time, they are just boobs and don't really serve a function (anymore).  

Right now, I am all for doing a mastectomy, and really would like to do both breasts. Especially if I can get reconstruction done, (again the whole girl thing)  I  don't want to be selfish about this and not make the best medical decisions based on my emotions and body image.   I feel that making the most radical decisions NOW will help ensure we don't have to go down this road again in the future.  

Last week, I had coffee with  my friend Deb.  Last year, she was diagnosed with breast cancer - (her situation is scary similar to mine - same kind same size etc...) she told me that I should demand a Breast MRI be done prior to surgery. She also gave me a bunch of literature.   Its all so overwhelming - but like she said I have to be my own advocate. They wanted to put me on stronger antibiotics when I asked for the biopsy to be done - had I not they wouldn't have found the cancer. 

I talked to my dr on Friday and asked him:
If they were going to do a CT scan, Breast MRI and Bone scan?

-He said that there wasn't a rush to do those until after the surgery and they knew better what they were dealing with.  The results wouldn't change what they did surgery wise only the treatment afterward.  

Deb however, told me that the Breast MRI shows if there is any additional cancer they need to remove and if it is present in the other breast as well.

I also asked him if they were doing both breast why or why not? 

- He said that he didn't think it would be beneficial at this point to do both. Again, they don't know what the heck they are dealing with yet. Most women choose to have both done to reduce the chance of reoccurrence but he said even if you do remove the breast tissue, it could still come back in the chest wall or sternum area.

Another question I asked him was if I could have a port for chemo put in during surgery? (so I don't have to have it done later) 

-He said based on the size of my mass, he didn't think I would have to have chemo - Again, when I told Deb this she totally disagreed. Her cancer is stage two and was just over 2cm - mine is already 2cm and they know that they didn't get all of it - so I don't see how I wouldn't have to have chemo also - not that I want it mind you but what the heck??? I have no clue what to think or do about all this!

So, I read and ask questions- find others who have been thru this and talk to them on the phone for hours.  I spend all my free time searching the web - wow there is a lot of stuff out there.  One of my favorites that adds humor to a not so funny subject is: preparetolive.org. It opens with a video of the grim reaper going into the cancer ward of a hospital and ends with a cancer patient chasing him out. Dying has never been an option in my mind with all this but something about the video makes me feel empowered.
Another site planetcancer.com has a video about a girl named Anne.
~ "Anne is lonely. She lives with her mother, has no friends, and is fighting cancer. Her escape from reality exists in the form of The Aviatrix, an intergalactic superhero alter ego who rockets through space to fight the powers of evil on distant planets". It ends with her riding off in her bathrobe (the official uniform of the U. S. cancer team - standard issue) with the lawn man - Cheezy- true but fun none the less! So, while doing all this research isn't my first choice, its where I am now and what I need to be doing - so - I've got a new hobby! Who knows maybe someday I'l make my own short movie! :)