My Chemo Friend--Sally

I met Sally on my first Taxol.  I awkwardly stared at her across the aisle of the comfy chemo chairs.  You just don't see many young women or men in the chemo room.  I wanted to talk to her, but sometimes I know I come across as waaaaay too friendly and I didn't want to scare her.  It was obviously her first time in the chemo room and she was scared.  I wanted to at least tell her that it's ok and it does get better.  I wanted her to know that we are fighting the same monster and we will both beat it.  I wanted to hear her story, I wanted to share mine.  I wanted her to know that she is not alone.  Young and fighting. 

I kept asking Sam if I should talk to her.  We kept making eye contact.  It was like meeting someone in a bar and I didn't know if I should buy her a drink or not.  My treatment finished up and I was unhooked, so I pulled up my boot straps and got the courage to talk to her.  Who would think me, of all people, would be shy?!

I approached her and just asked if it was her first time.  She said, yes and I told her it would be ok.  We talked about surgery, we talked about our kids, we talked about reconstruction (we share the same plastic surgeon), and we talked about our BRCA diagnoses.  Sally is BRCA 1+ and I am BRCA 2+.  Our genetics, from the time the sperm met the egg have said that we are more likely to suffer from breast cancer and ovarian cancer than the average woman and man.  This diagnoses is our why.  We talked about our faith and how helpful each of our churches have been.  With a promise of prayer for one another, we parted. 

I felt so fulfilled by our meeting.  This was the first person in real life who has been through chemo at my age with young ones at home.  It was someone that I could simply say "this sucks", and she could say, "yes I know." 

I hope that I gave Sally an inkling of hope that day.  I hope that I provided her with a sense of empowerment rather than fear.  I know Sally gave me more than I can explain.  She gave me a sense of community, that I wasn't alone in this.  Our treatments have only coincided a few times because of changes in schedule, but  I am so blessed by Sally and I can't wait to see her on Friday. 

So Sally, my chemo friend, one day our hair will grow back, one day we will have complete breasts, one day we will not have to meet while we are being poisoned, but for now, thank you.  I can't wait for one day when we can meet for lunch. 

 

Taxol #2, #3, #4, #5, #6, #7, #8, #9

    Well, wow.  I'm behind :)  I guess that's a good thing, because there really hasn't been too much to report.  The Taxol has been going much better than the AC did.  I can function fairly normally, minus being overly tired.  I've been back to work and working Monday through Thursday, full days, for about 8 weeks now.  Fridays are reserved for chemo and rest.  

The Taxol has been much more tolerable.  I have my appetite back and I WANT to get out and do things.  My hair is starting to grow back in, I have a nice 5 o'clock shadow on my head; whereas my eyebrows and eyelashes are nearly gone.  I have experienced a little neuropathy in my hands and feet, but with a dose reduction things have seemed to at least plateau.            

I really don't have much to report on the treatment front as far as chemo is going, other than I'm almost done and I feel great!  Keep your eyes pealed for a "I conquered chemo" shirt walking around in 3 weeks or so.  (I have yet to find this shirt, but I think I need it) 
  

    

My Benadryl induced nap time during Taxol     

Round 2 Cycle 1-Taxol and Leah Peah

Everyone has been telling me how Taxol would be easier.  My only response; I'll believe it when I see it.  After all I had been through with the AC I was just hoping to feel better so I could continue working and not just feel like I was wasting away on the couch while watching 4 hours of Bones every day. 

Sam and I stopped for our traditional breakfast at Brueggers that morning.  We decided to dine in this time because we had the time.  While we were sitting there minding our own business, a random lady approached the table. 

Random lady: Pardon me, Keep fighting the awesome fight.  You're amazing.  (all while handing me something)

I looked down to a gift card with the same message.  I don't know who you are lady or how cancer has impacted your life, but thank you.  Thank you so much.  It is people like you that remind me there is good in this world and there is support even when you aren't looking. 

Sam and I arrived to chemo on our usual Friday morning.  It was the last day of nurse's appreciation week, so I brought gifts for my 3 nurses at the office.  We saw the NP this time and talked about how the last AC went and what to expect with Taxol.  I had been feeling so great.  I had gone back to work and I really wasn't looking forward to endless days and nights of not feeling well. 

(poem found on pinterest)

We drew labs from my port and had my exam.  The findings from the labs showed that I am severely anemic and am close to needing a blood transfusion.  I'm hoping since I feel better I can just eat an iron rich diet and avoid that; also, they say it should improve with the Taxol.  This could be why I'm so exhausted all of the time. 

After the simple exam and talking with my research nurse, Sam and I were ushered back to the infusion room.  I learned my usual chemo nurse Caitlyn was no longer working, her little baby girl was trying to come early so she is now at home on bed rest.  I was so bummed.  Caitlyn has been with me through me entire chemo journey thus far and I felt like she was my security blanket.  She was my comfort zone. 

Her friend and also expecting, Hali, would be my nurse today.  Kind and quiet in demeanor I knew I was in good hands. We went over all of the side effects again and I signed my consent.  Benadryl is one of the pre meds for the Taxol, I don't remember the last time I have taken a Benadryl so I had no idea how I would react.  Taxol can create a reaction in a lot of patients so I was armed with a bell in case I became short of breath and panicky--umm that's enough to create panic.  Once the Benadryl started flowing we soon saw how it affected me.  I was out cold.  Sleeping.  I slept through the whole treatment and we didn't need to use the bell. 

No picture this time.  Sorry, I was out within about 5 minutes of the infusion starting.  I woke up just as the Taxol was finishing and Sam and I were on our way. 

I felt good and normal.  This was not normal.  I was so scared of what the side effects would be.  My cousin was coming into town for the Race for the Cure and we were hoping to meet up for dinner.  And . . . . great news!  I felt great, so we could!!

We met up with Leah Peah (yes, we're both 29 and I still affectionately call her this) and her four boys, Austin, Andrew, Alex, and Ashton.  We had a nice quiet dinner and I ate a steak and potatoes.  Clearly I had a craving to knock that anemia to the curb!  Leah had driven for 14 hours and I was tired so we parted ways after a great dinner and a great day. 

Chemo #4--I beat the Red Devil

I had been feeling amazing the week before my last cycle of AC chemotherapy.  I wanted to get up in the morning and I wanted to go do things.  I made a trip to work to visit which was so much fun, I had lunch with Sam's grandparents and great aunt and Camden and Judi, I had a visitor (hey, Lisa!), and more visitors (hi Megan and Katie).  The week was good.  I could eat, I could get dressed, I could shower, I could sleep.  It was the most normal that I had felt in a really long time. 

Frankly, that was enough for me not to want to go to chemo.  Not that I ever want to go, but seriously, I felt good.  Let's just let it be.  But no.  I was reminded by many that I need to continue my fight and this was the last one of this kind.  I'm just so tired of being sick and tired. 

I cry a lot--like daily.  I wish every day I could have my smile and positive attitude show through, but it doesn't.  I cry because I feel like a bad mom; I'm so tired, I can't play or make dinner.  We read a lot of books and I bathe him, but aside from that I sit on the couch.  I cry because I feel like my husband deserves more.  There is no one in this world that deserves this "speed bump" only 3 years into their marriage.  I feel like my husband deserves a wife who cooks and cleans and wants to do activities.  I cry because I just didn't want this to be my life. 

Cancer is horrible.  I just want a life where I can make plan without having to wait to see how I feel, or where I don't have to be bald, or where I can shower without becoming exhausted.  I wish for a life where I'm not nauseated or dizzy and that I can eat the foods I love.  Cancer, I hate you. 

I know I have readers out there that are clinging to this blog for support and positive uplifts, but I have to be real.  The Red Devil that is adriamycin and cytoxan, frankly, sucks. 

Feeling great, I woke up the morning of chemo and got ready as usual.  I registered for classes because I WILL be going back to school this fall.  My friend Jill was taking me this time so Sam could save a few days of PTO at work.  We loaded up with out things to do and headed to chemo. 

Nothing great to report.  I still lost more weight, but kept my numbers where I need them to be.  I'm becoming more and more anemic which is typical.  But overall, I'm still healthy and fighting. 

The port has been making things easier, I still don't like it, but it's easier.  After waiting on a lab that took forever to come back my favorite nurse Caitlyn got me hooked up and I was given the red devil and sent on my way. 
 

 

taxol.  I'm thinking about getting her a gift, but I haven't found the perfect chemo graduate gift yet. 

 

I did ask the doctor, from a request from Sam, when we will do follow up scans.  His answer (Dr. T was out, so I saw someone else) was that I won't.  I am cancer free.  Right now everything we are doing is like a flu shot.  We will know if my "flu shot" works when my "flu season" is over, typically 5 years.  I don't feel like a survivor yet, I still consider myself a fighter.  I pray to God that one day my life isn't all about cancer, but rather about family, friends and love. 

 

To leave on a brighter note, I want to extend a thank you to everyone who continues to follow our journey.  I know your prayers are helping and we praise the Lord for the selfless giving we have received.  I promise, I'm working on thank you notes and they will come (better late than never, right?), but please know how grateful we are.  Truly, we could not do this without the support of our family, friends, and church.  You are all amazing.  

Chemo #3

I was pretty tender from my port placement and a little tired.  Sam and I had to be there early as usual.  We've made a habit of stopping for breakfast along the way.  Just a little tradition to brighten the day. 

It was the first day using my new appendage, ie my port.  Blood draws are always first, so I was called back quickly.  First, access to the port is gained.  Ok, not fun.  She essentially grabs the port access, which is under my skin and holds it while she sticks in a small needle.  This was very sore being that this skin had just been cut to put the port in the day before.  But, once she finds it, she does one poke and I'm done. 

 

(image: Google images)

 

(image: Google images)

 

The IV line is then attached.  The nurse did a quick saline and heparin flush, which tasted nasty (I then understood why there was a huge jar of Jolly Ranchers on her counter).  She then drew blood and flushed again and sent my on my way.  I picked up Sam out of the waiting room and we went to see Dr. T. 

It was just a normal quick appointment.  The side effects had been a little bit better on round 2 and they are giving me everything they can to combat the effects.  All was well, so we went back to the waiting room to wait for my favorite nurse Caitlyn to call me back to punish me. 

Thanks to a huge breakfast bagel from Brugers on the way to treatment, I had only lost a few more pounds and the staff was ok with it.  I still need to gain, but they were ok for this treatment. 

Caitlyn hooked me up through the IV line and we were started right away.  Don't mind the picture, I was really tired. 

 

Things went smooth and we were headed home before we new it.  Really there isn't too much to report as things went as planned.  3 down, 1 to go.  I really want to quit chemo.  It's hard and I hate feeling sick all of the time.  I hate that I can't make my family dinner, I can barely sit at the table with them because the smells make me sick, and I can't play for long with Camden. 

 

I know that quitting isn't an option because I have a family and there are more people to think about than just myself.  But man, this isn't fun. 



 



Going to Port

After my last chemo, the nursing staff was very frustrtated working with my IV so I was scheduled to get a portacatheter placed.  This is something, again, that I wasn't looking forward to and I didn't want to do.  With cancer, you don't get a lot of choices and you never feel in control.  This has been a challenge for my Type A personality. 

A port is essentially just an IV that staying all the time that all of my chemo and blood draws can be admninistered through.  I just get one very small poke and everything else is fed through the line. 

(image: Google images)

I was scheduled for surgery with the lovely Dr. DJ to get my port placed.  Just a simple, same day procedure.  My good friend Melissa agreed to take me because Sam needed to already take me to chemo that week.  She picked me up in one of our many spring snow storms and we trekked our way to the hospital.  It was a slow drive with lots of cars in the ditch, but we made it with plenty of time to spare. 

I checked in at the information desk and a volunteer escorted us into the operating room dungeon down stairs. I don't think he thought we were nearly as funny as we did; he introduced us to the addmissions woman as the two smart asses.  Whoops.  It was a short wait and I was taken back to get prepared for surgery. 

I have lost all of my hair by this point, so I was wearing my hat.  Just dreading the time when they were going to tell me to take it off.  I did not want to take off my hat.  Again the nursing staff was great and the process went by quickly.  Because of the weather a lot of people had cancelled, so I seemed to get a lot of attention.  Getting an IV started was a problem again, I still have bruises nearly 2 weeks later (and yes, I know I got behind on my blog--sorry!).  But the CRNA finally got a good stick. 

Melissa got to come back and see me before I went in.  Of course we joked and laughed most of the time.  That's why I like this girl, she thinks I'm funny.  Before I knew I was taken back for a quick nap and then taken to the recovery room.  Everything went really quickly and easy. 

Now I look more like an alien with a lump on my chest where the port access is.  I know this will ultimately make things easier on everyone, but I just didn't want it.  It feels funny and I don't like the lump.  I got to try it out at chemo the next day.

(image: Google images, I don't have black chest hairs)

The Shaving

Sam and I took traditional wedding vows.  There is something about vows that have been said for hundreds of years by millions of couples that reins true to the Lord in what we were promising to each other.  I never wanted to write my own vows because I never thought I could perfectly express what those words already were saying. 

 

 I __________________ take thee, _______________ to be my wedded husband/wife, to have and to hold from this day forward, for better, for worse, for richer, for poorer, in sickness and in health, to love and to cherish forever, according to God s Holy Ordinance, and thereto I give thee my pledge, until death us do part.

In sickness and in health.  Marriage isn't about just being healthy and just getting all of the highs in life.  Marriage is about the celebrating the successes, but embracing each other through the lows.  I never thought in 3 years of marriage Sam and I would be faced with the challenges that have been brought before us.  

In sickness and in health.  Sam and I both report no cavities in our marriage, healthy physicals, healthy vet visits, and healthy pregnancy and delivery.  I think there is a reason sickness is listed first in the vow of marriage because all couples need to be reminded that you may not both be healthy through your entire life until death do you part.  

In sickness and in health.  Even after my short hair cut the shower was still an emotional experience for me.  Not only staring down to no breasts, but then feeling clumps of hair falling down my back and fearing the need for a plumber when I grabbed my towel.  I asked Sam to shave my head for me.  He agreed, even after me reasking multiple times and even offering to ask my friend Jill to do it for me.  Sam insisted he wanted to do it for me.  

In sickness and in health.  I've cried a lot since my last treatment.  I don't know if it's the change in meds or the change in my appearance or really what.  The most tears I have shed have been the last week.  It took me a whole week to compile my thoughts for this post.  It's been traumatic for me.  Hair is a vanity, but cancer has already taken so much of my femininity, why does it have to take my hair, too?

In sickness and in health.  We walked down to the basement bathroom where I cut Sam's hair for him.  We got out the folding chair and the clippers and cape.  I turned the chair's back to the mirror.  I couldn't watch.  I just couldn't do it.  My hair had been combed funny and was under my hat all day so it was hard to clip short.  Sam tried to joke and lighten the mood, but we both knew what our true feelings were.  When we were finished I looked up to my ever-loving husband, the picture of strength and positivity, to the tears in his eyes.  I apologized to him.  I felt so ugly, so worthless, so helpless, and so sorry that I made him do this to me.  We embraced and both cried for a long time.  Cancer is hard, cancer is really, really hard, but the emotions that are placed on your marriage are the toughest we have ever experienced in our sort 29 years.  

In sickness and in health.  I took that vow in front of God and our family and friends on October 3, 2009; pledging to Sam that I would be by his side no matter what until death do us part.  But, you know what, he took the same vow.  He reminds me daily that beauty is not on the outside, that I am so much more than my hair.  For this, I say, I love you Sam.  This is why God put us together, because we are stronger as two than we are as one.      

Chemo #2

My mom had come back to visit for the last week.  We really didn't do much other than hang out and get the house picked up for my next down period.  We had some great times just being together and being with Camden.  He is starting to say so many more syllables and can say most animal sounds on command--even a rooster!  He amazes me every day and reminds me of what I have to fight for.  

I woke up on the day of chemo in tears again.  I hate this crap.  I don't know how to put it.  I just feel like its torture and I wish I didn't have to go through this.  Sam went to work because my mom was with me this time.  But in true chemo day fashion I fell in his arms and cried.  My hair started to really come out on Wednesday and my emotions were high.  I have said from the very beginning that chemo would break me and it has.  I cry so much out of frustration and anger.  

I showered and watched the clumps fall down the drain and I cried in the water pouring over my head.  I feel so vain having these feelings, but throughout this process I want to be honest and upfront.  

My mom and I had to leave very early to get to chemo by 7:30.  I had my blood drawn and then had to meet with the nurse practioner since Dr. T is on vacation.  Today was my first surviorship appointment.  Apparently, there is a national program for cancer patients to get them through the stages of survivorship.  I'm still fighting the battle, but I have survived the diagnoses.  This appointment is a check on where I am doing emtionally.  Well . . . if you read the first few paragraphs you might guess, I'm pretty down.  

I met with the wonderful Sara, NP.  Fresh out of school and a sponk for the fight against cancer.  I think she and I could be friends outside of this crappy diagnoses, but we tried to stay on task--hard for me, I talk a lot.  I was asked a series of questions on a computer terminal that then printed out my areas for concern that we would talk about. 

We started off the visit with how my last treatment went and basically found out it went about as bad as possible.  I should have called, but I hate to be that patient.  We talked about how things should go better this time and what threshold I should have for myself and how much I should allow myself to tolerate. 

Then on to the survivorship portion--cue  the tissue full box of Kleenex.  Sara asked one simple question:  How are you feeling about all of this? 

You know, I don't know if anyone has truly asked me that yet, or if it was anyone I felt that I could let me guard down to.  I felt like I could be honest and my first response was "I don't want to die." 

The past couple weeks since starting treatment this all become so real for me.  I'm the strong one, I'm the comforting one, I'm the one who gave the eulogy without tears at my brother's funeral, I'm the one sending donations and prayer; so why me?  Why do I have to be on this side of things? 

I don't want to die.  I have worked so hard in my life for what I've become.  I've gone from a 5 year plan to a 2 day plan because I don't know how I will be feeling.  It's awful.  I'm scared, I'm sad, and I'm angry. 

My areas of concern from the questionaire were fatigue and body image.  Man, I sound vain.  I went from working a fast paced full time job, going to school, taking care of a toddler and husband to sitting in a chair taking 2 naps a day.  Taking a shower is utterly exhausting and going to Target requires an internal pep talk.  Body image--oy, where to even scratch the surface.  I was a gymnast and a dancer growing up--you look pretty for those things and you strive for perfection.  You have beautiful make up and hair and your outfits are always sparkly.  Ok, so I've lost the sparkle in place of scrubs and sneakers, but I still pride myself on my looks.  I'm still working (ok, let's be honest, talking about working on) on my post partum body and now I have to go through losing one of the outmost sercurity blankets, my hair.  I've known since surgery this would happen, but catching clumps of hair in the shower is so hard on your self image.

Sara and I talked about groups and meetings that I could go to to meet women who are also going through what I'm going through.  I'm still skeptical because I don't want to sit with a bunch of post menopausal woman talking about cancer.  No offense, older ladies, but it's just not the same.  When you are 50 you have lived a good portion of your life the way you wanted, I've only just begun to figure out what I want my life to entale. 

After our hour long discussion and lot of tears from me and my mom we went and got seated in the infusion room for treatment.  I lost 4 pounds so I got in trouble.  If I lose too much weight they have to scale back my treatment and therefore the cancer isn't getting attacked as hard as it should be.
 

 

I think my favorite part is the heated blanket.  I need one of those blanket warmers at my house.  Things went mostly as planned, but apparently my veins suck and they had a hard time getting my IV in and to stay where it needed to be. 

 

 

Four sticks later and my IV was finally in--and the nurses had scheduling set me up to get a port.  I really didn't want to have to get a port, but they aren't really giving me an option.  Pretty much how I feel about a lot of things, so I will just roll with it. 

 

The treatment took a lot longer than the last time because of all of the IV problems.  We were finally done about 1:00 and of course I found someone to talk to.  She is an older woman who is about 10 weeks ahead of me in treatment.  She was wearing a gorgeous wig and gave me a few tips.  My mom finally pulled me out of there because I tend to make friends too easily.  At least the place is comforting. 

 

I didn't make the same mistake of going for Mexican, but a burger sounded good and I've been craving dilly bars so we drove through the DQ on the way home before I took a nap.  I'm half way done with the red devil (adiamycin and cytoxan).   I just have to keep reminding myself that I can do this. 

 

The Days Since Chemo

There really hasn't been much to update since my first treatment, sorry to my fellow followers.  The first treatment . . . well, hmm, to put this without swear words . . . was not fun.  I was already nauseated on my way home from treatment and the next day was worse.  The mornings seem to be the best, but then it just gets worse as the day goes on. 

Saturday and Sunday were the worst days and by Monday the nausea was subsiding, but starting on Sunday I had a splitting headache that would not go away.  I tried to stay on top of pain medicines and antinausea medicines, but nothing really made it better.  Watching TV commericals with food is nearly impossible and watching the Food Network is out of the question. 

Frankly, I'm too stubborn so I didn't call the doctor.  I didn't want to be considered a baby that just couldn't handle it.  I deal with patients like that on a daily basis and I didn't want to be one of them.  I'm 29 years old, I'm tougher than that. 

Finally on Wednesday I began to feel a little bit better.  Other than being very dizzy, the nausea was mostly gone and my headache was at least managable.  I was still really tired and the simplest of tasks made me exhausted.  Taking a shower required a two hour nap afterward just to recover. 

My appetite hasn't been the same.  Mexican food is a no go (umm, seriously I wonder why), so I have lived off of chicken nuggets and tots because they are bland and I know they will sit well.  I'm lucky to get about one good meal a day because I don't have an appetite. I typically love food, and I love Mexican food.  Some will be shocked to know that the thought of Chipotle makes me want to puke. 

Each day has gotten better and that is what is important.  I'm finally starting to feel normal; just time time for them to push poison through my veins again. 

I did finally talk to the Dr. T's nurse Amanda.  We went over my side effects.  Well, my stubborn-ness did not pay off.  Apparently, I should not have felt this horribly.  I had more severe and more side effects by number than I should have and I should have called the doctor.  They are rearranging my medicines for the next dose so hopefully I will feel a little more normal. 

Dose two is tomorrow.  I don't want to go because I don't want to feel like this again.  But, I will get in the car tomorrow morning to start another battle.  My hair has stayed stable through the last couple weeks; until yesterday.  I finally blow dried my hair and flat ironed it.  After I was done there was a big chunk of hair in my brush.  I cried.  I just feel like cancer has stripped me of so much, why my hair, too?  But my wig, Juliet (named by my sister), is waiting on the wig stand for when I need her. 

Thank you for the continued prayers, cards, and kind words.  You people are amazing and without you I wouldn't be constantly reminded why I fight.  I don't know if in my lifetime I will ever be able to fully express my gratitude to you.  But, please, know that when I say thank you that is the best words I have for the generosity and support. 

Chemo #1

I hadn't been sleeping well the last couple nights in anticipation of what to come.  I had been telling Sam from the beginning that I was fine with the cancer stuff, I was fine with the surgery and I was fine with the reconstruction; but chemo would be the one thing that would break me.  The thought of poison running through my body is just really weird.  I know I want to work in medicine, but sometimes I don't agree with the medicine going into me.  I understand the science and the theories, but it's just different when it's you. 

I woke up before the alarm and my mind was spinning.  There was just so much unknown about how I was going to feel during and after the treatment.  By the time Sam's alarm went off I was in tears.  I was so scared of everything.  I didn't want to do chemo, I was done with this cancer stuff.  Sam held me and assured me we were in this together.  I had got him a card on the day of my surgery which I feel sums things up for us pretty well. 

 

I love you. 

Nothing will ever get in the way of that. 

Because together we have a the strength

to look the world in the eye and say--

"Give us your best shot.  We can take it."

And you know what? The world will see

that what we have, "different" though it may be,

is far too beautiful, far too big to ever weaken. 

You are half of my heart, and I am half of yours. 

There's no one and nothing that can separate us. 

We have an awesome future ahead of us. 

One that I know we'll face together,

hand in hand and heart-to-heart . . .

because I love you and you love me back

--J. Gahr

 

We got ourselves showered and ready to go.  Because it was raining we didn't know what traffic would be like to downtown.  Camden may have been a little confused because we were leaving nearly an hour earlier than normal.  I had packed a bag with my breast cancer planner, a book, the iPad, and my wallet.  Again, there isn't anything online that you can find that will give you a list of what your chemo bag should entail.  I mean people bring suitcases in there, so I wasn't sure what I would need. 

 

We dropped Camden off and he started his day out with french toast.  I couldn't get enough kisses before I went.  He has great kissing lips.  But we quickly got back on the road because of the borderline freezing rain. 

 

Once at the clinic, I checked in and waited for my labs to be drawn.  I had the same phlebotomist as last time.  A nice Nigerian woman with a sweet British accent named Liz.  I told her I was going to grow to hate her.  Just joking of course.  She had to get I think about 10 tubes of blood from just my hand.  Because they were doing treatment into my arm she had to go low to not get in way of where my IV would be placed.  She got 20ml the first stick.  Then tried two more times to get more as there were four more tubes needing blood.  After the third total stick and no more blood, she stopped because she didn't want to dig too much.  There is quite a bruise, but not too bad considering.  And she was gentle about it. 

 

Because I was the first appointment of the day, I was taken right back to the exam room to see Dr. T.  She always asked if I have been hospitalized, any new pain, new concerns, and then gives me a quick physical exam focusing on my heart and lungs as well as my lymph nodes in my arm pit and neck.  Then she puts in the final orders for the chemo and out the waiting room I go to wait for my nurse. 

 

We over heard the oddest conversation from a man about his toe nails and finger nails falling out.  It was so weird, but all I could think of was if my finger nails and toe nails will fall out, too.  Not soon after, my lovely pregnant nurse Caitlyn came to get me to start treatment.  

 

I was the first one back into the infusion room so I got to choose where I wanted to sit.  We chose a seat by the window and the TV.  Caitlyn went through what the timeline would be for the day and what medicines I would be receiving.  I signed my consent and she got my IV set up.  With a nice armed blanket, my feet up, and my iPhone I was set.  

 

 

My shirt, courtesy of my breast cancer angel Jess, was quite the hit.  It says "STPD CNCR".  I felt there wasn't anything more fitting in my wardrobe.  I received 3 antinausea medicines, then the adriamycin, then the cytoxan.  Just like promised we were all finished up with everything since I walked through the door in about 3 hours.  During my cytoxan I also go a massage.  Apparently, a local massage school comes in and gives free massages to the chemo patients.  It was great.  She rubbed my neck and back and shoulders.  It was all I wanted and more. 

 

Just before I was to go, Caitlyn has one more medicine to torture me with.  It's the medicine to suppress my ovaries and hopefully protect my eggs a little more.  She was going to inject a pellet into my belly.  Yes, you read that right, it was a pellet.  The needle was the biggest thing I have ever seen.  The injection itself wasn't that bad, but my belly sure hurt afterward.  Luckily it's a three month dosage so I will only have to get 2-3 more of these.  It reminded me of the boob harpoon they used for the core biopsy. 

 

We left the clinic and walked down to the Midtown Global Market and had the best Mexican food ever.  I'm still trying to decide if that was a good idea or not, but it sure tasted good going down. 

 

We made a quick stop at the pharmacy for anitnausea medication and then went home.  By the time we got there I was wanting a nap and wasn't feeling the best.  I took about a two hour nap and then the nausea hit hard.  I spent most of the early evening in the bedroom with a puke bucket nearby.  But, my baby boy came into rub my feet.  I love him so much. 

 

 

After drinking some flavored water I felt a little better, but soon made my way to bed.  I was just hoping the next day would go better. 

 

 

 

Clinical Trial Randomization

This will also be a short blog post, just to let you know which group I am in for my clinical trial. 

I was randomized into the control group.  Boo, not what I was hoping for.  I really wanted to get the Herceptin, but there is no change in my original protocol so we will "just keep swimming."

I'll add some cute pictures of Camden for everyone's enjoyment though.  These are all from his one year photo session. 

Sister Time

My sister, Kristen, goes to school in Wyoming for dental hygiene (brush your teeth people) and had a spring break, so she made the long trek to Minneapolis to visit.  I love having her around.  She is opposite, yet similar to me.  Physically you know we are sisters.  With the Sam nose and stature, but your personalities are very different.  I am very Type A take control and Kristen just kind of goes with it.  She has been there for me when I call her because I miss our brother Jason and she has been there with me to rejoice getting engage, having a baby, and getting into nursing school .  I love her and I am so happy we have each other. 

 

 

She came into town on Saturday and instantly we began our love for gastronomy by going out to eat.  And then a NAP, because seriously doesn't love a good nap.  She would attend church with us and make our weekly Target run with us and then honestly I think we took another nap. 

Monday we started off getting things done.  I needed a wig.  Since I am going to lose my hair I needed something to cover my bald head.  I don't know if I will ever feel comfortable with just a bald head, but I don't know yet if I will be comfortable sporting a scarf or a wig.  We took off to a wig ship in Anoka, but once we got there we realized it was closed on Mondays.  So after a quick Google search we found a place in Har Mar mall that had wigs and other hairloss type stuff.  A little further than I would have liked to drive, but in the end it was worth it. 

We were greeted, by the two cutest middle age women.  There were about three full shelves and then three additional rolls full of all kinds of colors and cuts and textures.  I didn't know where to even start.  The one woman on the phone said "try the opulence, she is prefect for the opulence!"  We sat down and went through wig basics and started trying things on. 

Awful, awful cut

Complete joke

Not too bad, but it wasn't me

 

 

And the winner is . . . . .

 

 

First, please ignore my face.  We were having fun.  If you have seen me recently, this is my hair cut.  When we text it to Sam he had to ask his coworker and my friend Melissa if that was my hair or a wig.  It's so real and looks like it coming right out of my head.  Later in the week we picked up a pretty silk scarf that I will have to play with. 

 

I still need to decide if I'm going to go to the salon and have her do an intermediate cut.  I love my hair, I've always had nice hair, so it's really been emotional for me to go through the thought of losing my hair.  The ladies at the shop got me set up with wig shampoo and conditioner, a wig stand, and a head cap.  I was set!  Overall it was a great experience. 

 

On Tuesday I just had a dental appointment and Kristen had a class conference call (she does some classes through another school for her bachelor's degree) so It was going to a short day.  This was also our brother's birthday, so even though I think we both knew how said we were, we pushed through and got things done.  Kristen wanted to come watch get my teeth cleaned because she is weird and into that teeth stuff--yuck!  But I'm still in the no cavity club.  We then went to lunch at Punch Pizza.  Oh yumm, buffalo mozzarella and san martzano tomatoes and fresh basil, melt my heart.

 

We then decided it was time for some pampering.  Pedicures!!!  Who doesn't like their feet and legs rubbed.  I could care less about the polish, I just like the massage.  Because I don't have any lymph nodes on my right I'm not supposed to manicures.  Kind of stinks, but if I go to a really nice place with sanitized tools I would be ok.  But pedicures are still game.  A couple hours of our time, laughing at the male nail tech hitting on Kristen.  Hilarious. 

 

Wednesday would be her last day here and as we had to planned, we went to the Minnesota Science Museum to see the Body Worlds exhibit.  If you like anatomy and physiology you will love this exhibit.  It is amazing to see the dissection of human bodies down to such a raw form.  The reproductive exhibit is my favorite.  It is neat to see a fetus from nearly conception to full term.  How they grow and develop is truly a miracle. 

 

We ended her trip with dinner at home and a few hugs.  I miss her.  I wish we were closer, but Facetime does wonders. 



Scan Results

This is going to be a short one, because really there isn't that much to say.  I had all of those scans done about a week ago.  Amanda, Dr. T's nurse called late last Monday night to tell me . . . . .

ALL SCANS ARE NORMAL!!!!!!!!!!!

 

 

 

 

 

 

We now assume that all the cancer is gone and the chemo and radiation are preventative to get rid of any floaters out there.  Praise God, praise medicine, praise my husband, praise my son; I needed this boost of positive information to keep going. 

 



Clinical Trials

My oncologist called late last week to talk about a current Phase III clinical trial.  This trial is for a specific subset of breast cancer patients.  When I received my biopsy results, as well as the surgery pathology, it was determined I was HER2 negative.  HER2 is a protein that attaches to the cancer cell and becomes part of the fuel for the cancer.  This is considered to be a very aggressive type of cancer as this type typically grows very quickly because of the protein. 

In all actuality my cancer is not a true HER2 negative, but rather a HER2 low.  There isn't enough of the protein to consider it positive.  The clinical trial the office called about is investigating whether or not HER2 low patients would benefit from the standard of care given to HER2 positive patients.  There have been studies in England and Europe that have proven HER2 low patients to benefit from receiving the medicine Herceptin as part of their protocol.  It cuts the recurrence rates in half. 

It is a 50% chance I will be randomized into the group who receives the medicine.  If not I will be in the control group for the study.  The study will follow my treatment for 10 years.  If the study reaches a Phase IV and eventually FDA approved then I would be one of the first people to receive this new protocol. 

I have signed my consents to be a part of the study and now wait for randomization.  I hope I get the Herceptin, but if not I know that I will be furthering the knowledge of breast cancer.  And specifically breast cancer for women under 30.  There aren't a lot of statistics or studies done on my group of women, but in my opinion we are the ones who need it.  We have too many years to live and more research should be done on how to minimize recurrence and metastasizing cancers.  This is just one way I will give back to the women who will follow me on this never ending bumpy path.   

What Are We Waiting For

In order to make sure we know EXACTLY what we are dealing with I need to have a few scans before I can start treatment.  Dr. T suggested I have a PET scan, head MRI, and EKG before I begin my chemo.  I also have to go to chemo class. 

The PET scan is a scan to show the function of my organs.  This is a full body scan, to my knowledge, and will pick up on any additional tumors in my body.  They use a contrast dye to illuminate anything out of the ordinary.  This scan terrifies me.  Not so much the scan, but what the results might show.  I don't want there to be any other cancer in my body. 

(image: drugline.org)

 

(image: http://mediumtimes.blogspot.com/2010/11/scan-results.html)

The brain MRI was suggested, but because the tissue expanders have metal in them and an MRI is magnetic I get to do a CT scan instead.  This is great.  Much bigger tube and no Jason hockey mask covering my claustrophobic face.  This is to make sure the cancer isn't in my brain.  Again, scary. 

(image: http://happyhippierose.com/2012/02/10/how-a-ct-scan-near-bout-killed-me-seriously/)

 

Last I have to get an EKG or ECG (same thing).  This is just a fast little test to show that my heart is healthy because the AC chemo can cause heart failure in patients who may have an underlying heart condition.  

 

Sam and I will also attend a chemo class together.  I'm not really sure what to expect here.  It's given by one of the oncology nurses and I guess she just talks about what will happen during treatment and what I need to do before and after to insure that I feel the best I can.  

 

I should be calling the wig shop or writing thank you notes, but instead I sit here blogging and feeling a bit sorry for myself.  Today is my first day alone alone.  I guess I'm just in one of those valleys that people talk about when they mention peaks and valleys.  I'll get out of it and tomorrow will be a better day.   



Stage 3A--Gulp, This Sucks

I found out in the hospital that my sentinel nodes tested positive for cancer during surgery.  I found out the day I returned home from the hospital that 4 additional nodes tested positive for cancer.  That is 5 our of 13 nodes that held this demon living inside of me. 

Since I am finally catching up with blogging--sorry I can only handle so much cancer talk each day--I met with the my oncologist yesterday.  I figure I should claim her, we are going to have a long term relationship.  

A few people have asked how I chose an oncologist.  Well I don't know anyone in real life who went through breast cancer at 28 recently or who lives in the area.  I really like the Piper Center, apparently it's one of the best cancer centers in the metro area, so I started an online search for the doctors who partnered with the center.  I found this lovely petite looking lady named Dr. T.  She was Harvard medical school with undergraduate degrees in biology and religion.  She seemed to have a strong but calm presence yet faith.  I looked at a few others, but ultimately kept coming back to Dr. T.  I guess she was it. 

After arriving in the serene office of Minnesota Oncology we were told by the receptionist that there was coffee and tea available.  Holy crow; they had real mugs.  In I'm sure what was an attempt to make the place a little more tolerable they had the hearts of Sam, my mom, and myself. Sign me up, I'll take a tea.  My mom had her tell-tale hot chocolate (I seriously think she has an addiction) and Sam had a cappuccino.  We waited patiently as many hairless people walked by.  

I felt like everyone was staring at me.  "That must be the new girl," is what I thought they were thinking.  I donned a healthy complexion, all of my hair, and the lovely lumps under my hoodie pockets which were my drain tubes.  I sat back nervously checking Facebook and drinking my chamomile tea.

We were called back and my weight and height was taken (seriously they really know how to ruin your day).  We got to our room and more vitals were taken.  The nurse came in to go over the 10 page health history I had filled out.  Ok, maybe not 10 pages, but probably 8.  She had a really odd sense of humor that no one was really sure how to take.  Before she left the room she asked what I was expecting out of the visit.  Heck, I've never done this cancer thing before.  I had no clue.  She asked if I had done any reading.  Umm, hell no.  I tried one night and the first thing Google showed me was the poor survival rates of woman under 30.  I immediately shut the computer and never went back.  I'm not paying Dr. Google, I'm paying my team of physicians.  I should listen to those I'm paying for their hard earned, very expensive opinion. 

Dr. T came in and started going through all of my test results.  The biopsy, the MRI, the genetics, and finally the surgical pathology.  This is what the doctors use to see exactly what is happening and how they will treat it, but also how they will stage my cancer. 

I kind of knew what was coming, but didn't really feel like hearing it out loud.  Breast cancer is staged at Stages I, II, III, and IV.  At stage III they break it into A, B, and C.  This is based on your tumor size, lymph node involvement, and how fast the cells are dividing.  My cells were now at a grade III out of III.  This means the cells are dividing very fast and growing quickly.  The primary tumor was still measured at 1.7cm and the secondary tumor of 7mm was a benign mass.  Again, I had 5 out of 13 nodes positive for cancer.  This puts me at a Stage IIIA.  

Because of my age, stage, lymph nodes, and cell division I have earned myself a ticket to chemotherapy, radiation, and medication for 5-10 years.  This sucks.  My mom put it best; aside from wanting another child, my second selfish request is to not lose my hair.  

Dr. T pretty much insured that I will lose my hair.  She gave me a prescription for a wig and told me the American Cancer Society will give a free wig.  I wonder what I will look like bald?  There is a 20% chance that chemo will put me into an early menopause.  So there is hope for a miracle baby when this is all said and done.  I do have the option to harvest and freeze my eggs, but with no guarantee we will need them and a $12,000-20,000 price tag Sam and I have decided it's not for us.  I have always talked about adoption and maybe one day that will be the way God completes our family.  There is light at the end of the tunnel, there is hope.  Thank you all for uplifting me in prayer, with kind words, and encouraging calls and cards.  I need each of you to beat this.