Wednesday, January 28, 2009

MUGA test and CHEMO starting!

Quick update - today I went and had a MUGA test done it checks to see how much blood pumps out of my heart when it contracts.  Anything over 50-55% is considered normal - You will be happy to know that mine was in the 60% range :)    Folowing is a description of the test I stole from someone elses blog (http://www.slowtrav.com/blog/kim/archives/006401.html)  Gotta give credit where it is due!  I did change a few details that weren't the same as my experience 

"They weren't looking for anything wrong, just a baseline for comparison to make sure it doesn't get damaged by the poisons medications they're going to start injecting into me tomorrow.

As the tech said, this is probably the easiest procedure I'll endure during the next few months. It started with a needle, as they injected something into me (I forget what). Then I had to wait 20 minutes, while whatever they injected into me bonded with my red blood cells (a little tango perhaps). Then another injection, this time with radioactive stuff (and no, unfortunately, I do not glow in the dark). They attached three sets of diodes and wires. Then took three sets of pictures of my heart, spaced 16 min apart based on my heart cycle.  And then I was done. "


I did learn that I have a slight irregularity in my heart beat.  Its not a big deal -nothing to be concerned about I never knew it was irregular -but its been there for as long as I can remember.  Basically, on every 4th beat, my heart beats twice - so when you are listening to it on a monitor, it sounds like - BEEP -- BEEP -- BEEP -- BEEPBEEP-- BEEP -- BEEP -- BEEP -- BEEPBEEP.  No wonder I've always had a hard time trying to find my heart rate at the gym - ya know when you are suppose to stop and count for 30sec - Mine goes 1-2-3-45-umm I think 7-8-9-1011 - Yeah, I never had a clue trying to figure it out - NOW I know WHY!


Tomorrow, I start my Chemo and I'm slightly nervous about it - I think it will be fine and usually you have no side effects the day of treatment (they show up the next day) its just he uncertainty of which side effects if any I will have.  

I was accepted into the test study program for the test drug for my  HER-2 status so I will be getting 4 drugs now (I know I said 5 before if you keep up with these posts - but they decided to drop one of them)  So I will be taking:

Taxotere, Carboplatin, Herceptin, & Avastin 


and for those of you werdos who I know will ask what drugs I'm taking LOL - here is what they have prescribed currently:

Dexamethosone - I take this one 2x daily the day before chemo, the day of, and the day after - it helps to prevent side effects that chemo causes

and 3 different nausea meds:

Granisetron, Lorazepam, & Promethazine  - these are all take as needed.

The Granisetron, I am suppose to take for 3 days following chemo and the Promethazine is sedating so take that one if things get too bad

Fun stuff - I'm hoping and praying that I won't need to take any of them!


Saturday, January 17, 2009

Shaving Party

Come one, come all - be the first to shave my hair off!  Tickets starting at.....  NAH it's free!  

No doubt it will be an emotional event but I figure - if I have to loose my hair I may as well have some fun doing it.  
A few weeks ago I saw this photo in Zac's Professional Photographer magazine:

It is a ceremony of a young boy becoming a Buddhist monk.  Which I have no intention of doing - (becoming a monk that is or a young boy) but when I saw it, it was moving to me and I instantly wanted to photograph my journey.  

Then Zac started talking about me putting a tattoo on my head - which I think is a really cool thing to do -  but its not really "ME" - I was looking around on line to see if I could find some pix of others who had done that and he was right - seems no one has.  However, I did find some cool Henna stuff that I just may have to do :)  

On the Chemo Chicks website, there was a woman who had a shaving party - she invited over some friends and they helped cut and shave her hair off.  I don't want to sit alone in my bathroom crying as I watch my curls fall to the floor  -  lets celebrate - laugh - carve some strange designs and hair styles - lift our glasses and celebrate!  

I don't want this to be a scary time in my life or my kids.  Gryphyn in particular I think will have a hard time with mommy loosing her hair - He is all about hair - he gave up his "blankie" quite awhile ago and replaced it with playing with hair.  When ever he drinks, he curls his hair around his fingers.  When you buckle him in his car seat or he sits in your lap he says "I want to touch your hair"

Somewhere I was reading that to lessen the shock for you family, you should get a short hair cut so that you, and those around you, can get used to seeing you with shorter hair.  So I'm thinking I may do that this week - Zac thinks that I should ask for a "high and tight" flat top with the bald spot and all :)  I was thinking a tad more feminine for now.    

As for when, my hair should start to thin after the first treatment and start falling out after the second so I have about 6 weeks to make the plans.    

So, anyone who is up for a party - let me know and we will figure out a date when Zac the fabulous is available and have an extreme party for him to add to his photography collections :)


Tuesday, January 13, 2009

CHEMO!


Well, we were hoping that I could possibly get out of having to do Chemo - but after meeting with the Oncologist yesterday, we feel chemotherapy it is the best course of action at this point.  

Right now, if I chose NOT to do the Chemo, I have about a 60-65% chance of the cancer coming back - If I choose to DO the Chemo treatments, my chances drop to 15 -20% for reoccurrence. They won't ever be able to make the numbers zero because everyone is at risk for cancer (some more than others) already having it, puts me at a greater risk.  

So, tomorrow,  I have to be at the VA @ 12:30 for another surgery.  I am having a small operation to have a port placed just under the skin below my collar bone.  This will help to make the chemo treatments easier.   Well at least less needles in my arm anyway.  It looks like this:
The handout they gave me on it describes it this way:
"The PowerPort Implantable Port is a small device with a hollow space inside that is sealed by a soft top.  It connects to a small, flexible tube called a catheter.  When a special needle is put into the soft top of the PowerPort device, it creates "access" to your bloodstream, meaning that medications and fluids can be given and blood samples withdrawn."

Like this:

I'm not sure of the exact date I start Chemo yet - My oncologist wants to start next week but is still waiting on a final HER2 test results.  When I was originally diagnosed, one of the blood tests , called an HER2  was inconclusive - they are now running a more specific test called fluorescence in situ hybridization (FISH) test.  This test provides information related to the number of copies of the HER2 gene in the tumor cells.  

About 15-20% of breast cancers have too much of a growth-promoting protein called HER2 and too many copies (more than 2) of the gene that instructs the cells to produce the protein.  Tumors with increased levels of HER2 are referred to as "HER2-positive."  HER2-positive breast cancer tumors tend to grow and spread more rapidly than other breast cancers.

My test originally came back as a 2 - which is boarder line - If I do end up being HER2 positive, then they will add a drug called  Herceptin to my other chemo drugs. 

Herceptin is a protein  that fits like a lock and key on HER2 cells.  Once it attaches to the cell, it bring other immune cells to help kill the cancer cell.

The other drugs, I will be taking as part of my chemo are:
Cytoxan, Adriamycin, & Taxotere
Cytoxan and Adriamycin both work to stop the grown of cancer cells, causing the cells to die.  Taxotere is a mitotic inhibitor that effects the cell during mitosis keeping it from splitting into more cells. This drug is given every 3 weeks.  Which sets the time frame for my treatments.  Right now, I am scheduled for 6 sessions (every 3 weeks)  

On a sad note, today was my last day at work for quite a while.  The oncologist recommends that I limit my time around kids  (other than my own) because my immune system will be weakened by the chemo treatments and a common cold could become deadly  - I am going to miss the kids in the 2 year old class that I teach and all my friends at Trinity Presbyterian's MMO program!

Saturday, January 10, 2009

Breast Cancer 3 Day



As you all know, a few months ago I was diagnosed with breast cancer - and I have been struggling with the whys and what do I do with all this. There must be a reason God allowed this happen - am I suppose to learn something? 
DO something? WHAT??

I remember doing a breast cancer walk with the girl scouts many years ago and thought I should do that - since I have boys, I was thinking I would fly to AZ and do this walk with my niece's girl scout troop - so I was looking on line to see when the next one was and instead, came across the huge 3 day walk.
How is it even possible that I have never heard of this? 
So many women all over the US raising money and trying to get the word out to find a cure - and I miss it!



So now I'm even more compelled to help get the word out. 
Before I was diagnosed myself, I was so naive to breast cancer and its effects. 
I always thought - yeah that sucks - but its not like anyone dies of breast cancer! SO WRONG! It could have been me this time if I hadn't insisted the dr's do a biopsy when they wanted to try stronger antibiotics. More and more people I know personally or thru a friend ARE being diagnosed with breast cancer. The numbers are astonishing!

"In 2008 alone, it's estimated that nearly 200,000 American women and nearly 2,000 men were diagnosed with breast cancer. Unless we find a cure, within 25 years more that 5 million Americans will develop the disease and over 1 million could die."

So more than ever, I am up for this challenge! 
The 3 day walk covers 60 miles in 3 days time. You are required to raise a minimum of $2,300 to register other than that, I'm not really sure of the details yet - but I am convinced that I HAVE to do this. For me and for other women - TO FIND A CURE!

My sister Valerie is joining me in this challenge. 
We will be walking in AZ on November 13-15th

If you would like to join our team, make a donation, help us train, or be a part of this in anyway, we would love to have you along on this journey!

www.The3Day.org

Friday, December 26, 2008

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.

Tuesday, December 23, 2008

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

Monday, December 22, 2008

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 :
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Gryphyn - YES he is pretty much wild and crazy all the time :)  
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Vahn- aka : Mr Smalls -  
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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.