Taxol! What a pain! And the New Year ahead...

Yep, they were right.  The physical pains associated with the Taxol do eventually catch up with you on day 3.  Uggghhhhh.....the weirdest thing for me, is "feeling" all of the side effects and knowing that it's the poison inside of me causing all of it. 

My hands look like sausages, I have gained 6lbs in one day from fluid.  My fingertips are numb, my legs are ACHING as if I had the flu.   I can't sleep....Do I sound whiney yet?  (I am really not complaining too much out loud, just here in blog land)

But with that being said, I am going to keep trucking along, and hope that this passes by pretty quickly.

Tomorrow is the New Year, I have high hopes for my year 2012.  I know that it is going to be a long and tough year for me, but I can HONESTLY say that I am still very thankful that it is me going thru this, and not one of my boys.   This whole cancer thing, REALLY is ZERO fun!

Everyone have a most Happy New Year! And take care of yourselves!

Taxol, my new friend!

Is Taxol my newest chemo friend?  It's killing the cancer inside of me, and I feel pretty NORMAL!
I hope I am not speaking too soon, but today has been a good day.  I have done some extra sleeping. 

But on the "clothes" scale, I was wearing jeans and out running errands today!  LOL, usually after my chemo's I am in pjs for days, and then I finally work my way up to yoga pants....today was a blue jean day, which I would say is small miracle in itself :)

I am finished with my rounds of the Red Devil (the Adriamycin and Cytoxin cocktail)  I am so glad those rounds are behind me.  The 5 days it took me to get over those drugs were miserable...

I didn't have any of the allergic reactions that 50% of patients experience with the Taxol which is a great thing.  At least I had my own guardian angel there yesterday, my good friend Taft was at Duke South yesterday working, and would have been part of the emergency team if I had gotten into any trouble yesterday.  Luckily, we were able to just hang out and talk and not get all serious with the medical interventions :)
The side effects of the new chemo meds are suppose to hit me on day 3 or 4 and last between 3 and 4 days. All of my at home meds have now changed.   My home meds now are geared towards bone and muscle pain, and also something called peripheral neuropathy. That is tingling and numbness of the fingertips.  This can be permanent in some cases, so I have to stay on top of the 4 vitamins that they have asked me to take to try to combat it.  Alot of diabetics experience this.  If the neuropathy becomes unmanageable they are going to stop the Taxol early.  If it gets to the point where I can't put my earrings in or clasp my jewelry, they want to know.  But hopefully, I can get thru these 4 rounds without that happening, so the Taxol can do it's job....

So my thinking right now is, I can handle the physical pain alot better than the miserable aspect of what the Red Devil was.  I will get back to you on Saturday or Sunday, if that changes.  I hope that I am not a total idiot for thinking that way....

But I have felt great today after my newest Chemo cocktail which I started yesterday.   I will have a total of 4 rounds of the Taxol, one down only 3 more to go!  Come on February 8th, that will be my last day of chemo treatments.  Go ahead and do a cheer, because I sure am! 

Once, I am done with the chemo part of this journey, I am moving on to radiation.  I am thinking I am starting radiation by March, that will last for 6 weeks.  I plan on doing my radiation at Duke Raleigh to be closer to home and to save me from having to drive to Duke 5 days a week.

In February, I have to make some BIG surgery decisions, and I am researching my options.  I have bought some books, and I am hoping that they will make a light go off as to which path I need to take...my surgery list is a big mouthful...

Double Mastectomy

Axcillary Lymph node surgery

Hysterectomy

Removal of Ovaries

Reconstruction surgery-which may take a few surgeries (I am unable to do implants, so I will have to have the tissue surgeries done, which are more involved and take more than one surgery day to complete)

So it looks like the year 2012 will be filled with lots of anesthesia and hospitals for me.  I cannot wait till all of this is behind me.

A big thank you, to Uncle Eric and Uncle Steve for spoiling and taking care of the boys yesterday while we were at Duke.  The twins turned 8 yesterday, and they had a great day, filled with movies, pizza, ice cream, and Kanki.

I love getting all the little cards and trinkets from everyone, it really makes going thru this so much easier!  Yall have really spoiled me! 
I am so LUCKY to have each and everyone of you!

Just when you think you have your shizzle figured out

Hello all,
I don't have alot of time, but I thought I would give yall the basics of what I found out this week.
I had genetics testing done a few weeks ago to see if I was positive for the BRCA1 or BRCA2 gene. 

And lo and behold I tested positive for the BRCA2 gene. 

So what does this mean...basically, 3 of my exon's are replicated on my gene chain.  This is hereditary and was passed down to me.  Those 3 little cells is what has caused my cancer. 

LONG STORY short...I am skipping all of the genetics mumbo jumbo for now and actually maybe forever, it does not make for good fun reading...

If I continue on my same treatment plan knowing my genetics results, my breast cancer will have a 50% chance of coming back.  Even after all of this CRAP. 

The good news in all this is there always a plan B.  The plan B a double mastectomy which will decrease my chances of the cancer coming back by 90%.    I have questioned why the heck  we didn't do this in the beginning.

But with the information I had then, the treatment plan we chose then was the correct path for me then.

The best I can sorta get from the docs is, you don't treat a cut on your finger with an amputation.  And in the scheme of things, they really try to not have to do mastectomies unless it is the last resort. 

Dumb moment at Duke yesterday--

ME on phone with Duke surgery office--Yes, I want to have plastics scheduled for a consult, when I come back in February to schedule my other surgeriers.  I found out my BRCA2 results and they are positive and I don't want to waste anytime getting plastics involved, so I can keep my treatment plan moving along.

Family practionioner--So you want plastics involved?  You want a mastectomy?

ME-Ummmm, correct me if I am wrong, but because I am positive for this gene, I have a 50% chance of the cancer coming back, unless I get a mastectomy which reduces my risk to 90% chance of it not coming back.

FP--Yes, those numbers are correct.

ME--Yeah, those numbers make my desicion pretty clear.

Duhhh to myself!!!

So, we will work out what I need to do with my ovaries at a later date.  The BRCA2 gene causes an increase in ovarian cancer.  So whether, I get them removed or take medication, I need to research and figure it out.

I am sorta getting the feeling of being chopped away piece by piece...I really am taking this whole Buffy thing in stride, I definitely have had my days.  But I get that she is mine to own, and I can't really change things.

And again, I am just thankful, that I am strong enough to take this on....and that it is not one my sweet little boys.  Again, mommies have those super powers to get thru anything :)

Says they won't lying about this bald thing...

I lost my hair just over a week and a half ago. This coming up Friday will be two weeks now. 

I have to tell you I cried like a baby that whole day.  I am so glad that my SIL was here with me that night for a few hours, its amazing how she just made everything better!  Thanks Sara!!!  Love you tons!

Kathleen, my very sweet mama from the block, had been cutting my hair shorter and shorter that week because it just kept shedding and shedding.  I was leaving my DNA all over Raleigh and Durham.  It's a good thing, I AM as innocent as I look or I could be in some serious trouble. 

One of the biggest pains about being bald, is my kids perception of me.  I REALLY don't want to be scare of me, think I am going to die, or have any of their friends pick on them because of their bald headed mama. 

When my hair was shedding and I mean SHEDDING, I was letting the boys pull it out for me.  Braeden and Chase thought it was a great party trick.  Braxton has been alot more sensitive to it, but I am his favorite, I think he is really worried about me.  But all three boys are pretty excited about the prospect of coloring my bald head with washable markers, again what a fun party trick.  I have had to tell Chaser no SHARPIES :)

Some memorable quotes

Braeden--Mom are you going to wear a wig to soccer?  You probably should because it's embarrassing to be bald.  I don't want any kids to pick on you.

Chase--Mom can you get a wig like George Washington?  This makes me giggle.

Braxton--thinks its great that he has the longest hair in the family now.

Speaking of wigs, they suck pretty much.  No matter how much they cost.  They are itchy and I feel so self conscious with them on.  (Memorable quote from Janele S about one of wigs, "how did you find one that had 50 million colors like your real hair."  that makes me LOL :)

A big thank you to my friend/hairgirl Dana Ray of 12 years, for giving my wigs haircuts :)

I guess I should add the positive note about being bald, I can get ready in 14 minutes FLAT....

With that being said, I am pretty comfortable in my skin and have been rocking the hats and bandana's.  It's just much easier that way. 

Again a big thank you to Chrissy Wisler and (mama) Brenda Keen for making me the most rocking bandanas :)

Tui and Missy thanks ladies for the gifts of hats :)

Chase has specifically asked me to wear wigs to his sporting events, so I will not scar the child and comply.

I guess I should add the positive note about being bald, I can get ready in 14 minutes FLAT....

Now on to my very awesome husband and  supoortive friends that just ROCK and who also happen to be bald now....

Bart shaved his head the same day, I had to shave mine.  Steve and I had some concerns, but in the end it turned out awesome! 

My friend Jim, had said from the beginning of my cancer journey if I lost my hair, he was going to shave his head.  We shaved his head on Thanksgiving night.  It really looks good! I have to say the new haircut fits his new motorcycle very nicely :)

Stone and Noah two awesome kids, shaved their heads that same night....they are both totally rocking the mohawks!  Thanks to the moms!  I love having their support!

And this past Sunday my friend, Anthony shaved his head in support of me.  He looks awesome.  Free haircuts baby!  Let me know if anyone wants one, hehe!

I can really say that the support of all of yall just means the world.

Tomorrow, is chemo treatment 3.  Wish me luck.  I counted up  my weeks, and it looks like I will finish up the chemo part of this journey on 2/8/12. 

<3 to you all!

So what is this Chemo thing all about

Hey yall,
I have had a ton of people ask me how my 1st chemo went.  I thought I would give yall a time line of what I experienced.

I had Chemo on Tuesday, and was feeling pretty good during the treatment.  As soon as Bart and I are packing up to go.  A headache hits me like no other.  You have to understand, I take maybe 4 Advils a year.  I never get headaches...The headache is obviously medicine related, because goodness gracious they were pumping my body with all kinds of poisons. 

We go home, I go to bed for a few hours.  (I am able to get up that night, and have Braeden and Chaser read to me. Which for the whole chemo time, I am able to have them to that with them)

After they go to bed around 745, I hit the hay again and end up sleeping a full 15 hrs.  I am guestimating that I slept around 18 hours both Tuesday and Wednesday.

Wednesday, I had to go back to Duke to get a shot to increase my WBC count.
My major symptoms that day were extreme exhaustion, and the whole time I was awake,  I was nauseaus and my mouth had that watery feeling like when you are pregnant.  I was able to hit the Target with Bart before my appointment to get a few things we needed.  So I was up and out and about, like a living zombie I would say :)

On Thursday, the few hours that I was up, I had a few friends stop in, and I was able to visit with them for and hour or so.   My major symptoms that day was more exhaustion, and the whole time I was awake,  I had major stomach cramps, girls you know what I am talking about. 

Never fear though, me and the girls were able to do some online shopping from my bed for some special chicks around here with birthdays, lol!

I did shed a few tears this day because even if you are only up for a few hours on Chemo the days FEEL so long, and you wonder how you will get thru them. 

On Friday, I was going to have to be in full mama mode, Bart had to work. I was still feeling like crap, tired, tired. 
As I was sitting in carpool, I almost lost it.  You feel SOOOOOO BADDDD and SOOOOO tired.  I wasnt sure how in the world I would get thru entertaining 3 boys with the rain outside....I appreciate the offers from Roger and Tui to go get the kids, but I really feel like if I can do it, I NEED to do it. 

Had offers from neighbors, that they would pick the boys up food for me that night.  Was glad about that, I couldn't even imagine where the energy was going to come from to clean the kitchen if I did cook. 
So lets fast forward to around 6 pm.....

For whatever reason, I am not complaining, it was like a switch!  Seriously, some of yall probably saw my facebook post.  It really was as if someone, turned me back into normal Marsha. It truly was craziness.  I felt COMPLETELY LIKE ME.  So since last Friday at 6pm, I have been feeling great and normal!

I am on an every other Wednesday chemo schedule, my next one is due on 11/16/11.  I honestly am not looking forward to it.  I know I will get thru it, but it's not really any fun. My brother Jeremy called me the other day, and we both laughed about how "Yeah, nobody says this chemo crap is fun"...Kinda like when you have a new baby, nobody EVER says you are going to be get lots of rest :)

I hope that my regimen does make me any sicker than what I was last week.  Also, I talked to my nurse at Duke, she said that they started me out at the highest Chemo dose for me.  So this means they will not increase my Chemo dose, and that usually most patients will experience the same Chemo effects each treatment, just add in more fatigue. 

I really am quite ok with sleeping for 72 hours, but I am not sure how I would get my 12 glasses of water in a day that I am suppose to drink to flush the Chemo thru my body and so it doesn't sit in my bladder and damage it.  TWELVE glasses, I am usually a 1 glass a day kind of girl.  But I would like to tell Beth Farner, thank you for introducing me to Mio, that stuff is awesome!  Beth, also brought me and fun Mullet cup to try to get all of my water down :)

More fun gifts last week, Clare made me my very own "Flat Steven Tyler's"  think of the childhood story books Flat Stanley!  SO funny and fun to hang with Steven!  Also Clare, got me the coolest shirt that says "Battle Mode"  I am totally going to use that next week during chemo.

Sara K, thanks so much for the PURPLE 32oz BPA free cup, to help me chug my water, and also getting me some Mio.  (Her and Beth obviously have great minds!)

Tracy and Lisa for getting me the Get-Well buttons!  They make me smile BIG :)   I <3 Pain Meds, the nurse's favorite, Chemo Sucks, One Tough Chick.....

I Love You people,
Marsha

Pick a topic any topic. Wigs? Haircuts? Power Port surgery? 1st Chemo?

I will begin this post going back to the weekend of 10/28.

With the Chemo I am on, I will loose my hair 2 weeks after I start it. 

Again, no body really wants this crap to happen to them, but the bigger picture is the bigger picture, I gotta live and do what I have to do. And I will probably miss the at least 3 to 4 compliments I get daily for my funky highlights, it will be ok :)  Dana Ray you have always rocked my hair!

So as always, I am wanting to make things fun and decided that an last minute plan to go on an outing to a wig shop would be just thing I needed to get started on accepting my new found baldness that will be upon me before I know it.  So off we go, Michelle, Sara K and I.

We end up at the Gallery of Wigs off of Edward's Mill Road.  You walk in and of course it's instant, ohh those are cute, eww not for me.

I would imagine that I tried on every length, every color.  I found out that I should never color my hair Platium Blond that was an awful color on me. 

Nor should I grow it out much longer than it was that day. (I cut my hair later that night) 

So a few hundred bucks later, I am the proud owner of two wigs, one is a very simple cut that we posted on FB, and the other she had to order in the "funky" colors that I wanted.  She also called that wig the cadillac of wigs, which scared me just a  bit.  But with this wig, I can flat iron it, hot roller it, and do whatever I want style wise up to 350 degrees.

So later that night, My MaMA Kathleen (she is a hairdresser) was at our neighbor's house celebrating his birthday.  I have always wanted to try a shorter hairstyle with the stack in the back.  (Remember, I have been growing my hair out for KJ and Rollin's wedding, and I was really liking how it look long, too) 
But I figure what the hay, I am going to be bald soon, Mama Kat let's go to your house and get haircuts.  So 7 of us piled into Kathleen's car and off we went.  So I am the proud owner of short hair for at least 10 days :)
I will have to say, I am dreading the growing back in stage, not sure if the pixie hair is for me....but pixie is better than nutha!   I hope I don't sound too whiny, its just my real thoughts....

Of side notes, Braxton wants me to get afro wigs.  Chase says he wants me to wear bandana's everyday because they rock and I will look cute in them.  Braeden just wants to know if I will be bald forever like Mr Geoff next door :)  

A big thank you to my neighbor Chrissy Wisler, she took some fabric I had purchased and made me some really cute bandana's.  I told her, I was going to have to buy outfits to match the fabric.  lol  Bart just groans at that statement.  But SERIOULSY, I can't be mismatching :)

So on to the not too fun stuff.
My port was on 10/31 at 7:00.  A big huge thank you to my sweet friends the Howells for getting me there. Taft got me there safely, and it confused us slightly, because for a minute we were thinking we headed to work, lol!

So things I can tell you the port.  The nursing staff were great, the not so great part for me was when the actual doctor came in, he never whet to the side of the bed where my head was turned. (they had me positioned just right, and I could not move my head.  So I have NO idea who the boy-child doctor is who did my surgery or what he even looks like. 

I hope I am not being bitchy, but seriously that would have take 3 seconds to introduce himself.  (Maybe, I am just spoiled, because when I worked in the hospital I was very much like I am outside of the hospital, personable, humorous etc.  I am also that way as a patient) 

Fast forward, this dang Power Ports HURTS for the first day, I needed to be in bed.  But Braeden knows what a big deal Halloween is around here.  We Crums and neighbors have the best time with the dressing up and decorations.  Braeden asked me every so sweetly if I would be giving out candy, and I could not disappoint that little face. The rain may have been a mixed blessing, who knows.  Donna came over and we passed out candy for almost 2 hours, when the boys got back, I was promptly sent to bed by Donna and Angie.

Next day is Tuesday the 1st my first chemo day...I will short and sweet about this. 
It was a LONNNNNG BUTTT DAYYYYY of appppppts.  I won't bore you with all the details, got there at 8:30 had muga scan (this will be my baseline picture of my heart, then we will recheck to see what chemo has done to damage it, THIS is what makes me want to cuss....is it not enough that I have cancer, but the drug you are fixing me with is going to damage my perfectly good heart.....sigggggghhhhhhh)  That's all the negative I will say, but DAMN!  
(again, sorry to all of my non-cussing friends, but I don't smoke so I need to let it out somehow)

Saw my medical oncologist after my muga.  She hooked me up with a pharmacy of drugs, I now take 12 pills a day vs the ZERO I was on....Bart bought me a pill organizer this morning, kinda made me feel old. lol 

So off to chemo appt I go....pretty benign.  It's a room full of recliners and tvs, and overworked RNs that can get to the alarm bells quick enough, so many alarms it sounded like a construction site.  The sad part for me, is all of the people in that room that were there.  Cancer affects so many people.  I know each and every one of you are affected.  This is my 3rd encounter with the monster.

I got lots of pre meds for about an hour and then at the 3:25 pm with Dr Phil on the tv on the talk show The Talk....my chemo iv push started. 
The worse thing about yesterday, was I had a killer headache, and I never get them.  But I woke up this morning feeling fine.  Supposely the real and true effects of chemo don't hit you till week 2 of your treatment.

I have a 1230 appt to get a shot to boost my WBC counts, which apparently causes achy bones,  that sounds like a blast!

So I am off my lovely's.  See ya soon

Eating Nabs and having a Diet Dew for breakfast is a BAD thing

Hi all,
I had yet another exciting needle filled day over at DUMC today. 

We got to Duke on time at 8:30 this morning.  Bart and I were armed with our books and iPads in anticipation of the wait that you always have at Duke, affectionally know as DukeTime.

I was able to catch up on emails and my calendar which is a huge task. 

By this time, it was around 9:30 and I had not eaten yet.  I sent Bart to get me something to snack on, he came back with nabs and a DMD.  I was still eating when the RN came to get me.  I had just put a cracker in my mouth, and made a joke about me talking to her with my mouth full, and that I was sorry.  She immediately, asked "you are eating?" 

(I am thinking, yeah can't you see the orange crumbs that are likely on my chin? Or the big ol DMD I am carrying, because I am never without one of those) 

She then told me I was scheduled for surgery.  I told her as far as I knew the only torture I was up for was my biopsies that day. 

I then spoke to another RN...blah, blah, blah!  So the misunderstanding was, that I was scheduled for my Power Port today, and that what I thought was my Power Port appointment on Tuesday is in fact my Muga scan.  (The Muga scan evaluates heart damage.  I have a healthy heart now, but I need to get a baseline Muga done, because the heart and the Chemo I am going to be doing are not very good friends.  That Chemo biotch ain't called the Red Devil for nothing)

So moving on, I had my breast MRI with Biopsies done today around 1130.  I was on that table for at least an hour and half if not more.  Initially, the "kids" I mean the extremely young looking doctors told me that they thought they were going to potentially be taking at least 36 biopsies today.  I will let you fill in the blank, what I was think.  HOLY------------! 

I asked for Valium for the MRI, the baby docs were hesitant, I quickly told them that I was not the kind of girl that can sit/lay still for 8 mins which is the time span of some of the pics/views they have to get. 

I had at least six 5 minute scans today, which they are OFTEN telling you not move.

It is so hard to lay still.  Everything itches, your nose suddenly has a bat in the cave, hair that was securely up in a ponytail now is falling out and tickling your cheek, your neck, you have to pee so bad even if you had just gone right before the scan, etc etc.

Keep in mind they are squishing the hell out of me, and also inserting 6 inch needles into me multiply times.   

If they could tell you not to breathe they would. (I dare you to try it at home, it ain't easy.  I am not really a complainer, but I think the Valium helped calm my mind down.)

I am uncomfortable to say the least after today.  They only took 5 biopsies, they think what they are seeing is a fibercystic mass on my right side. 

So I am back home, just got in from Tao Kwon Do with Chaser, as soon as Bart gets home.  I am going to find some really comfy jammies to put on.  And fall out for the day.

Side note funnies,

I am not suppose to take a shower or a bath for 48 hrs.  For real people?  The PTA bath does not work!

I now have more "metal" in my body.  I can't wait to go thru airport security.  The count is up to 2 Titanium clips and a Copper IUD that I had to get switched over yesterday.  (If that is too much information, SORRY)  But as Sara K, Chad and Jeff B were discussing last night, we think it will be quite a show the first time I get "wanded" thru security...lol 

Thanks to Donna and Tui for carting my kids to school and back for me!  It really is a HUGE help. A big thank you to Linda and Beth for bring grub over tonight for us.

So things on the agenda next week

Monday the 31st, I will be having surgery to get the Power Port in.  (I may actually have Chemo this day, I will know then.)

Tuesday the 1st, I will be having a Muga Scan, and I am thinking Chemo this day, too.