My Two Cents About 2011

Yes, 2011 is ending. Forgive me if I say it but thank you Jesus!  This chick is ready to move on and greet 2012 with a renewed sense of purpose and attitude.  According to my husband, daughter, and the History Channel, it'll all be for naught since apparently the world will be coming to an end on December 21, 2012 (per the Mayans).  I'm going to go out on a limb and say that's probably not going to happen, so I'll just share my thoughts on 2011 and my hopes for 2012. 

What a year!  Started off great for me.  I was on a mission to get healthy and the year ended with a mission to be in remission (get it?).  Ha ha ha.  Anyhoo, I realized this year (before my diagnosis) that I had wasted too much of my life being overweight and unhealthy.  I missed having an active lifestyle, really living my life and enjoying the world.  I spent many years going through the motions; working, being a mom, wife, volunteer, anything to take the focus off of myself and really doing what I needed to do.  As many of you know, Snohomish Boot Camp changed everything for me.  I not only had the resources to get in to good physical condition, but I met people that made me want to be a better person, friend, wife, and mother.  I made friendships that have sustained me through some rough moments, and found a community of people that have accepted me at my worst and at my best.  This may sound like an advertisement for a cult or something ridiculous, but these people have really been that important to me.  What brings it all home is the fact that I found all of this BEFORE I got sick.  What a gift!  I started the fight for my life with the physical tools, the mental strength, and the support system already in place to give me a chance.  I'm not trying to be melodramatic, but that is the reality.  If you don't believe me, go to some cancer websites and read some stories.  There are so many people out there fighting who have no hope.  Not because their diagnosis are so extreme, but because they don't have the means to cope.  I WILL NOT be that person. Does that mean I don't have moments of despair? Hell no!  But it's inevitable that I draw from the strength I've acquired this past year and suck it up and move on. 

Of course none (and I mean none) of the good things would have meant anything without the amazing love and support of my family.  When I say I have the most amazing husband, Jeff, that would be a lie.  No!  Kidding!  We have been married for 17 years and were high school sweethearts.  When you get married young, like we did, you have no CLUE what life is really about-at least we didn't.  You hope you pick the right person whom you believe will be a good husband and father, provider, and friend.  But how do you ever really know?  I can honestly say, I know.  Jeff supported me through the years in every way, and when the going got tough and I got cancer, there was never a doubt that he would step up and be everything I've needed him to be.  He makes me laugh when things are too serious, and he's been there in the middle of the grocery store when I've burst into tears over the thought this could be my last Christmas.  He doesn't take on the world and try to "make it all go away", he simply hugs me and says "it's going to be okay".  He tells me he's proud of me (and I believe him), and he reminds me of my goals (which can be annoying but necessary).  I am so lucky.  I love you Jeff. 

Also, my beautiful baby girl, Mandi.  The reason I wake up in the morning, the reason I go to work, the reason I come home, and the reason I drink and/or do recreational drugs occasionally.  She has been my workout buddy and more supportive than any teenage girl should have to be this past year.  At the end of the day, after all the nasty words and fights, she still wants to crawl into bed with her mama and that is reason enough to fight this fight. 

I'm also so lucky to have tremendous support from my extended family, in-laws, neighbors, and co-workers.  I hope I'm as good to you all as you've been to me;
Mom, Di, Jas, Yvonne, Doug, Howard, Gigi, Kimberly, Paul, Bill, Kathy, Christine, my Healthline Peeps (all y'all), Kyla, Karli, etc.  Thanks for putting up with my psychoness.  Love you all!

So, on that happy note.  I am REALLY looking forward to the New Year.  I have more reasons than ever to enjoy every moment.  I'm going to DO more things, spend more time with my family and friends, and don't be surprised if I give you a hug or throw in an "I love you" when you least expect it.  Life is too slippery a slope to let those moments pass.  Please learn from my experience and don't take things too seriously, or forget to enjoy each day.  Have a happy and HEALTHY new year! Oh and girls, please do your self exams and schedule your mammos!

Libby

If you break your neck, if you have nothing to eat, if your house is on fire, then you got a problem.  Everything else is inconvenience.  ~Robert Fulghum

I'll Show You My Neutrophil Count If You Show Me Yours

I know, that's just silly but I have cancer so back off. 

The last couple of days have  been (drum roll.....) GOOD!  I was able to work both days, not so sure I was productive, but I did make an appearance and go through the motions, so I get props for that. 

Since Tuesday-and my night from h e double hockey sticks (hell if you're slow), I've had some residual achiness from the Neulasta.  It's almost not worth mentioning it's so insignificant compared to Tuesday night's horror show.  I seem to get fatigued a little faster than normal but nothing too bothersome.  I've also noticed how important it is to eat balanced.  I battled a bit of a low blood sugar issue today, but fixed it right up with a Jamba Juice and have been good to go. 

I had my first post-chemo follow up today, which was important because they were going to do some blood work to see how my body tolerated the treatment last Thursday.  This was my first experience having blood drawn through my port, and it's all very fascinating.  I had Jeff take pictures for no apparent reason (other than to share with you all).  After blood draw, I had my appointment.  The doctor asked some general questions about how I was feeling (fine), any concerns (Neulasta can go to hell), any other issues (the port was a pain in my ass), and just an overall "what do you think" kind of pow wow.  In general, I seem to be doing really well with the treatment.  I wanted to fly across the room and strangle him when he told me that he recommends getting the Neulasta injection after each treatment, but after some discussion (screw you doc), we came to an agreement. 

Here's the deal on this whole thing.  The main thing they're looking for when they check blood is what your "neutrophil" levels are.  Neutrophils are the type of white blood cells that fight infection.  The normal range for neutrophils in the average healthy person range from roughtly 2,000 to 8,000.  If the neutrophils get too low in a cancer patient, they can't do treatment until they can get them back up.  The purpose of the Neulasta injection is to boost the white blood cells so the neutrophils stay high enough and don't affect your chemo schedule.  Well, when they drew my blood before my first treatment, my neutrophil level was 7,000. Great, high side of normal, should be good to go.  When they tested them this morning...29,000.  Yep, AFTER chemo, 29,000.  Hellooooooo Neulasta!  I'm so proud of my bones for working so hard!  It's almost like childbirth, now that it's over and I see the results, I have a certain fondness for the event.  So here's where we're at.  When they draw blood before my next treatment on January 12th, if my neutrophil levels are still high (around 15,000), I don't have to have the injection.  Even if I DO have to have it, I've been promised narcotics.  Thank you.

I should theoretically be on the upswing now from my treatment, and will probably continue to feel good until my next infusion.  This is all good and I'm very pleased.  My port is feeling better, and I feel pretty normal...YAY! 

Check out the card Kimberly gave me.  Love it!  Go Honey Badgers!

My White Blood Cells Are Attention Whores

I am no stranger to pain.  I have had a broken leg, dental work without being numb, bulging and ruptured discs in my back, childbirth, surgery, and I planked for 21 minutes (on purpose-yay Snohomish Boot Camp).  Nothing, and I mean NOTHING comes close to the level of pain I was in last night.  Apparently my white blood cells weren't happy with all the attention "nausea" and "port" were getting, so they threw a tantrum.

The day started off great.  I felt very "normal" yesterday morning and went to work as usual.  It felt good being out and about after several days of doing not much of anything productive.  I spoke with my oncologist about my port issues and they assured me that what I was feeling was normal and that I just needed more time to heal.  A couple of hours into my day, I started feeling some pain in my hips and upper back.  That was a bummer because I thought I was through the whole Neulasta loveliness.  Um....apparently not so much.

So here I am at work with upper back pain which was worse when I bent at the knees (for some bizarre reason), hip and pelvic pain.  Ewww.  I was a little perplexed by the upper back pain because THAT was not in the brochure, so I called the oncologist again.  I knew to be aware of some symptoms related to the upper back having to do with a port issue, so I figured I should run it past them.  The nurse I spoke with hadn't heard of upper back pain with Neulasta, but checked with the doctor and he was confident it was related.  Their advice: take Tylenol and if it doesn't help, call them back.  By this time is was late afternoon and I just assumed I could deal with the discomfort since I am a rock star and why bother the doctor AGAIN?  I almost preferred the "pain" to nausea because I could at least mentally prepare or "brace" for it.  Plus, like I said, I'm a rock star and pain is just a nuisance and doesn't count.  So whatever.

Well, I'll tell you what!  My white blood cells were having none of this "ignore it" business.  Jeff's mom, stepdad, sister, and her boyfriend came over to celebrate Christmas and make dinner last night, and by the time I got home, I felt like my bones were exploding.  Literally.  Exploding.  I started to think maybe I overdid it working, moved too fast, sitting in the car driving home, anything to blame it on an action as opposed to it just being "what it is".  After eating and trying to hang out for a bit, I went to lay down.  That's when the fun begins.  Oh yes, we're just getting started! 

Have you ever had a toothache?  Or a throbbing cut?  An injury where every time your heart beats your wound throbs in unison?  Imagine that same sensation only the throbbing is in EVERY LARGE BONE IN YOUR BODY!  I kid you not.  It hurt to breathe.  It hurt to move. It hurt to be alive.  I don't just mean it hurt in an "I stubbed my toe poor me" kind of way.  It was AGONY.  Surges of throbbing, shooting pain in my hips, pelvis and back, legs, sternum, shoulders, everything.  I was taking anything and everything I could get my hands on; Tylenol, Benadryl, Lorazepam, Claritin.  I iced everything and cried like a baby.  My poor father-in-law Dr. Doug was trying to give my ideas of what to do, but there just really wasn't anything besides ice, or maybe try taking a bath.  OMG, it was hell.  I do not know how I got through the night other than the fact I took enough sleepy time drugs to put me into enough of a stupor to survive. 

Thankfully, I am MUCH better today.  I have a general "flu-like" achiness which is a piece of cake comparatively.  I hope I'm through the worst of the reaction and will never underestimate the power of white blood cell stimulating drugs again.  Silly me. 

The good news?  I've completely forgotten about my port. 

All This Hot Mess Wants for Christmas is Another Christmas!

Merry Christmas everyone!  I hope you all had a wonderful weekend with your family and friends, full of good food and good memories.

We spent Christmas Eve at Jeff's dad's house and then had sort of an open house setup at our home on Christmas, serving brunch type foods.  I lasted a couple of hours and then had to lay down and take a nap.  Jeff and I went to see War Horse yesterday afternoon with Howard, Gigi, and our neighbors Bill and Kathy.  T'he movie was pretty good, not great, IMHO. 

Today is day five of Operation Honey Badger, and those little mother f'ers are working their magic (pardon the terminology).  I'm not going to sugarcoat it, I feel like crap.  You'd think this wouldn't be a surprise, and intellectually it isn't, but I guess somewhere deep down I thought I might sail through without a problem at all.  Oh denial, I miss you. 

Looks comfortable, huh?

My biggest issue?  My port.  In case you aren't sure, a port is a hole  they punch in your chest in order to attach a line directly to a vein to administer chemo, draw blood, etc.  It's supposed to make life for chemo patients way easier-and it certainly cuts down on the IV pokes they have to do.  I had my port "implanted" if you will, and that thing is causing me nothing but problems.  It's sore, bruised, and when I move a certain way it feels like the stitches are being ripped open.  It almost seems like something is wrong with it, but I won't be able to talk to anyone about it until tomorrow.  Hopefully I'm just being a big baby and it'll feel better in a couple of days. 

I've had bone aches from the Neulasta, which makes getting comfortable a bit of a challenge.  I'm religious about taking all of the drugs and have managed to get to sleep with the help of meds, but then have issues when I move around and my port gives me trouble.  What the hell?!!!!

I also have this constant feeling of being hungry, but when I eat, I get nauseous.  Oh how I long for the days of being nauseous solely from overeating lots of yummy Christmas food and goodies.  Oh well.  

 Who am I kidding...this sucks!  I feel so bad for the people who have to have chemo every week, or two weeks, whatever.  I'm lucky compared to them and I'm miserable.  Hopefully this is just how I'll feel the first few days but then I'll rally and have a good couple of weeks until my next treatment.  I'm going to work tomorrow and I hope getting out and accomplishing something will make me feel better. 

I'll end this post with a photo of my brother-in-law all "dolled" up yesterday.  I don't know what possessed Mandi and Cheri to dress Scotty up in drag...isn't he pretty?

Ooooh Pretty Flowers!

Okay...come clean.  Who sent me the beautiful flowers today?  I received them this afternoon and they were a-mazing!  The only thing the card said was "Go Badgers".

Whoever it was, thank you from the bottom of my heart.  It really brightened my day!

I had a bit of a rough night last night, and I'm not gonna lie, I was disappointed.  I had a nagging stomachache, headache, and just could not sleep.  My good friend Lorazepam let me down which was incredibly annoying.  I got up this morning and was not in a good mood.  It took me about a third of the day to snap out of it, and by late afternoon I was feeling pretty good.  We got all of our wrapping done and feel pretty ready for the next couple of days. 

I went in and got my shot of Neulastin this afternoon.  This is a drug specifically designed to increase white blood cell counts, which can often be the toughest battle a chemo patient has in terms of staying healthy through treatment.  If your white blood cell count gets too low, you are extremely susceptible to infection and life would just pretty much suck.  When you have cancer you pretty much battle suckiness on a daily basis so let's not make it worse if we can help it, m'kay? 

What the Neulastin does, if you can visualize this, is to cause your bones to go into overdrive producing white blood cells.  Imagine the marrow of your bones as sort of porous like a sponge.  Much like a sponge, when you add liquid to it, the sponge expands.  So when your marrow is producing more cells, the bone expands and what does that do?  Hurts like a you know what.  Now, I am all about narcotics and whatever pills "make it all go away", but much to my dismay they aren't too generous in that department  at the cancer center.  Nausea?  Anything you need.  Bone aches from the drugs they give you to save your life?  Take some Tylenol.  Yep, Tylenol.  Oh and if you need a chaser, Benadryl.  I think I need to have a conversation with these people.  Can you give me something that will knock me out until next month please?  Thank you!

So, since that's not going to happen, they do recommend of all things Claritin.  Yes, Claritin.  Apparently (who figures this stuff out by the way?) they found that over the counter Claritin given the day before a shot of Neulastin and for four days after, greatly reduces the swelling and pain associated with it.  I guess it's the antihistamine that does the job.  So, I've taken my Claritin religiously and am hopeful that whatever aches I get, if any, are minimal.  Should know in about three days. 

I hope you are all ready and excited for the holiday.  Remember to slow down and enjoy your friends and family.  I insist. 

Let's Get This Party Started!



Nurse Lorraine

Today was the big day-my first chemo treatment-and boy was it a long one! We had to check in at 9:00 a.m. at the Cancer Partnership in Everett, and we were pretty amped up to get going. The infusion area there is very nice and very comfortable. The nurses are all over the top kind and crazy attentive. My personal assigned nurse was Lorraine, and she was nothing short of Fabulous with a capital "F"! Right from the get-go she explained everything in great detail. She asked me a ton of questions and answered a ton of mine, and it was all very reassuring. It's all about confidence in your caregivers people, at least for me.

My mom, Gail, and my aunt, Diane

Howard

First off, you have to imagine my "entourage" walking into this place. It was me, Jeff, Mandi, Jeff's dad Howard, my mom Gail, and my aunt Diane. Jeff surprised me this morning and shaved his head which was totally unnecessary but very sweet. Of course his hair will be grown back by the time I lose mine in a couple of weeks, but sweet of him nonetheless.

Mandi giving Jeff some of her hair to cover his shaved head.

So my entourage and I get settled and the festivities begin. They are extremely pro-active in treating nausea so the very first medication they give is for anti-nausea. That takes about half an hour through the IV which goes directly into my port. The next step for me was the Taxotere infusion. This one can have some initial infusion reactions so they start off with a slower than normal drip to see how it's tolerated. If it goes well, they increase it after about a half hour. Total time on this one was supposed to be about an hour and twenty minutes. I tolerated it well the first half hour and they increased it. Then of course I had a reaction. I started feeling really nauseous and wasn't able to shake it through the entire infusion.  They did slow it down again and watched my vitals pretty close to make sure I was ok.  I didn't vomit at all, it just wasn't pleasant.  Like I said, they are very careful with nausea so they adjusted my at home medication regimen and before giving me my next drug, I got another dose of anti-nausea meds. Right about this time my friend Kyla stopped by and brought me some iced tea and the movie Pretty Woman. Love it!  I was a little out of it at the time but it was so great that she came to visit.  Thank you my lovely friend!

Kyla and I

So the next drug to be given was Cytoxin. This one was supposed to be less harsh and only takes about 40 minutes to infuse. By that time they moved us to a semi private room (I think my group was a tad overwhelming). Here's the line of the day (which gives you an idea of the banter going back and forth).  Picture Mandi getting her flu shot and Howard says "suck it up Mandi".  Not to be outdone,  Mandi cleverly responds "Grandpa I'll suck it up, if you suck it in!". A true Hagen...Jeff was so proud (and so was Grandpa). So anyway, we're in our private room and very comfy. The cytoxin went off without a hitch and we were free to go. Woo hoo! One down three to go. We were there for about five hours and ready to get home.

But oh nooooo, the story doesn't end there. We're driving home and are just about over the trestle and Jeff mentions "I'm having some issues with my throat and my chest feels tight". Seriously? This was alarming because like Mandi, Jeff too had a flu shot. Can anyone say anaphylactic reaction? Yep. We dropped Mandi at home and I got Jeff two Benadryl and we headed back towards the hospital. On the way we were able to get through to our doctor's office and they got him in right away. By then the Benadryl started to kick in and we were fortunate to avoid a trip to the ER. The doctor gave Jeff some Prednisone and our day was done. We were wiped.

As the evening is winding down I feel pretty good. Nothing too concerning going on, just tired and a little tummy discomfort, but stuff to be expected. Tomorrow I get a shot of Neulasta which stimulates white blood cell growth and has been known to cause bone pain.  Let's hope I don't experience that little treat of a side effect. 

Good night all.  Go team Honey Badger!!!!!



Getting ready!





 

Whatcha doin' Lorraine?

 

Here we go!  First drug being infused!





Nice and comfy in our private room.



An Exercise in Visualization

Work with me here.

On the eve of my first chemo treatment, I can't sleep.  It's either the steroids they're having me take, the port that's sticking up about an inch out of my chest and hurts every time I swallow or move (not horrible just annoying), or it could be just a bit of anxiety about the morning's events.  Probably a combination really.  Anyway, I couldn't sleep and kept thinking about those little toe fungus creatures from the Lamisil commercials a few years back.  Remember those guys?  If not, you can watch it here- Lamisil Digger.  Why on earth would I be thinking of them?  Let me clarify.

I was talking to Kimberly and she mentioned something about the chemo running around and killing all the nasty cancer cells.  I think that stuck in my mind and being half asleep, I started visualizing a scenario that looked like this.

So my nasty little cancer cells (similar looking to that little digger character), have been laying low and hiding since their buddies were found and removed (surgery).  So they've split up and are taking refuge in remote areas of my body, waiting to rally.  Let's bring in the big guns, shall we? 

In my story, chemo is the Honey Badger of medications.  Honey Badger doesn't give a s***!  Nothing gets past this little cutie.  Honey Badger relentlessly runs around (in his glittery pink Tom's of course) looking for it's food of choice (cancer cells) until there are none left hiding.  Anywhere.  Well Honey Badger is not what you would call a "delicate" creature, so he might destroy some good things during his little hunting trip, but that's okay as long as he gets the little nasty digger guys. 

I've read that the power of positive thinking can make a huge difference in recovery, and you're supposed to visualize your body healing and the bad cells being destroyed.  Hey, I'll do anything that will promote healing and might as well smile while I'm at it!

So when you think of me getting my chemo treatments, envision these two characters fighting it out.  My money's on Honey Badger.

You Complete Me (and not in the overused Jerry Maguire sort of way)

Ok...the title is a bit of an "inside" joke between me and the people I work for, Kimberly and Paul.  Just wanted to thank them publicly for being so great and understanding of my situation.  I was told I would be "fired" if I showed up to work on Friday after my first treatment, which is very sweet of them.  I am so fortunate to work for such great people! 

(Shameless plug coming up) Oh and if you ever need experts on SQL Server, they're kind of the best in the world (not kidding).  Here's a link to their website  SQLskills.

Thanks guys!

On the 6th Day of Christmas My Doctor Gave To Me...Education On Chemo-ther-a-py!

Today was my first "official" day as a patient of Dr. Jiang at the Cancer Partnership in Everett.  I had what they call "chemo education".  Basically they bombard you with anything and everything you could possibly want/need to know about chemotherapy and it's effects.  Once again, I'm amazed by how crazy smart these scientists and doctors are. I mean how do they find the exact right combinations of drugs to kill these specific cells?  And, how do they do it without killing you in the process?  I am so fortunate to have access to fabulous health care, and lucky Jeff has great insurance through the City of Redmond. 

This whole thing is going to be an interesting process.  It's very complicated (at least it seems that way to me right now) with all the drugs you need to take prior to chemo, blood draws before, blood draws after, immune boosting shots, white cells, red cells, platelets, yada yada yada.  Thank God they gave me a binder with all the details because I retained very little from the actual meeting. 

I will say I was pleased with the Cancer Partnership in general.  They have a lot of educational support, classes, support groups, as well as a wonderful resource room where you can get anything from hats to wigs to port protectors.  Very well done.

 We also got a tour of the infusion suites where I'll be getting my chemo.  Today there were quite a few "younger" patients in there and it was actually sort of awkward.  You kind of make eye contact and almost want to say something like "yup...me too".  But you just avert your eyes and keep walking.  Of course I wanted to start handing out bracelets but that might have scared them, so I didn't.  There'll be time enough for that anyway.

So my next big day is Wednesday when I'll be getting my port placed.  Should be fun!!!!  I did get a port protector (a padded pillow sort of thing to protect the port where the seat belt hits) with cats on it.  Sweet!
One last thing.  I want to show you what my dear friend Kyla posted on Facebook yesterday.  Apparently her daughter, Brianna, was making a gingerbread house with her grandma, and thought of me.  

I think this is just about the sweetest thing I have ever seen.  Thank you Miss Brianna Seek!

Identity Crisis

Today I'm having an identity crisis.  I'm sure it stems from my "big" appointment yesterday and the whirlwind which will be my life for at least the next week.  Let me explain what I mean.

Up until two months ago, my biggest worry was making sure I didn't miss a morning boot camp and ruin my streak.  I literally worked my life around that one thing.  Now here I am dealing with all of these decisions and traumatic changes, but still trying to have a normal life.  It's so bizarre.  I don't feel different.

When I was at the Cancer Partnership yesterday for my appointment, it was a big eye opener for me.  That place was packed!  I could not believe how many people were there checking in for treatment, checking out for treatment, or waiting to see a doctor.  There was literally no place to sit and it was depressing.  I hate to say that, but some of those people looked so sick and I really thought " I do not belong here.  I'm not sick like these people".  Newsflash!!!!  Yes I am.  What-ever!  I do not want to be that person and that is a tough thing to digest. 

Of course every time I go to the doctor I end up learning something new and scary, which doesn't help.  Yesterday the lovely tidbits of info I got included the fact that I may lose my fingernails and toenails, and that with my type of cancer (lobular carcinoma), I actually have a higher risk of developing cancer in the other breast.  Awesome news! (In case you aren't sure, I'm totally being sarcastic).  So here I am today, going on with my normal life, when every once in a while it hits me.  Holy Sh**...next week at this time I'll have a hole in my chest and will be full of insane chemicals destroying every fast growing cell in my body.  Nice!

Alas, that other little part of my brain takes over and says "put on your glittery pink Tom's and suck it up!  You've had your moment, now move on!".  And so I am.  I refuse to let this blog be about all of the depressing aspects of this side trip I call cancer, but allow me my moments.  The objective now is to "handle it with grace" (thank you Debbi Grieser-you are so right) and to hopefully learn something along the way.  If I'm lucky, I'll educate someone else while I'm at it. 

I'm leaving you with an awesome video to watch...it made me smile.  Holiday Flash Mob

Second Time's a Charm!

So I had a second opinion today at the Cancer Partnership in Everett, with Dr. Jiang.  I was most interested in his opinion on my chemo options, since my current Oncologist didn't explain things very well.  I was very pleased with how the appointment went. 

First of all, he actually took a few minutes to talk to me before getting straight into logistics.  He asked a bunch of questions about family history and lifestyle, then did an exam.  He actually said "you're very healthy".  I thought that was ironic.  Here I am having a consultation about treating my cancer and the doctor tells me I'm healthy.  Go figure.

Anyway, after getting all the info, he gave me his opinion.  He agreed with my first Oncologist's recommendation for having the combination of Taxol and Cyclophosphomide (TC).  Because of my age, characteristics of my tumor, and my overall health, I'm the perfect candidate.  He also told me that this combination is heading towards becoming the standard protocol for treatment in early stage breast cancer, especially in younger patients.  He also told me that because this particular combination was studied in Texas (I think-somewhere in the west), it was more widely accepted on the west coast and south west.  He said the east coast was still resistant to it because it was new. I thought that was very interesting.  I guess you have to start somewhere with every new treatment, and I'm really glad we're given the options here in the NW. 

Dr. Jiang also told me that he did not want me to wait until December 29th to start.  I said "what about Christmas?"  He said "you'll have lots more Christmases, don't wait".  Ok... I kind of like that.  He also told me I needed a port for the chemo, which was something I thought I wouldn't need with this combination.  He told me it wasn't worth the risk of causing damage if an IV slipped, and with a port they just plug you in and you're good to go.  That part doesn't really scare me.  Everyone I've talked to says it's no big deal. 

Here is what my Christmas week is looking like.  Monday- Chemo education, blood draw, and a meeting with the financial people.  Tuesday-nothing.  Wednesday- Port placement.  Thursday- Chemo.  Friday- blood work and a follow up meeting.  Craziness!  Even though I've been preparing for this for almost two months, it suddenly feels like it's happening really fast.  But like my aunt said, "after next Thursday you'll only have three more to go".  When you put it like that, doesn't seem so daunting.

My overall treatment plan looks like this:

Chemo once every 21 days for a total of four treatments.  After chemo, I'll have radiation Monday through Friday for six weeks.  After that, I'll be on a hormone blocking drug called Tomoxofin for five years.  It's the beginning of a long journey...but I've got my seat belt on and am ready for the ride!

Thanks for all of the support everyone!  It means everything to me!

What does a Honey Badger and BRCA Genetic Mutation Have in Common?

Pretty much nothing except I wouldn't want to deal with either of them! 

If you haven't seen this video about the Honey Badger...go watch.  Too funny!

Ok...so what is the BRCA mutation?  Let me give you the 411...

One of the things they recommend you do when you get diagnosed with cancer at a young age (under the age of 50 is young in the breast cancer world) is to be tested for the breast cancer genetic mutation-or BRCA.  Out of all the women diagnosed with breast cancer, roughly 6% of them will be carriers of the genetic mutations BRCA1 or BRCA2.  If you are diagnosed (as I was) under the age of 40, your risk factor goes up to about 10%.  Not an alarming statistic, but it can have some pretty signifcant implications.

Jeff and I met with a genetic counselor last month because my doctors wanted me to get tested.  Here's the deal with that.  If you test positive, not only does your risk factor for breast cancer increase dramatically, but so does your risk for ovarian cancer.  Sadly, the screening for ovarian cancer is not even close to being as good as it is for breast cancer, so our genetic counselor said her recommendation would be to have a complete hysterectomy.  Not only that, but it has some serious implications for Mandi.  She would have to be tested as soon as she was 18 and if she were positive, she would need to be screened for breast cancer starting in her mid 20's and would have to make some major decisions regarding how aggressive she would want to be to avoid a cancer diagnosis.  Some women who have a family history of breast cancer and test positive for one of the BRCA mutations, opt to have mastectomies and hysterectomies prior to any cancer.  This may sound extreme, but in some families it's not an issue of will they get cancer, but when will they get it. 

So who wants to even think about this stuff?  Well, a woman diagnosed with breast cancer at a young age with a 16 year old daughter does...that's who.  So we had the test done and I've been waiting about four weeks for the results.  This was kind of the last hurdle to jump in order to have a clear picture of what my long term prognosis would be.  I was also anxious to know if I'd need to start planning a hysterectomy and how to fit that into my busy schedule.  I got my results today and I was....NEGATIVE!!!!  Woo hoo!!!  Good news...finally!

It amazes me what these smarty pants scientists are able to figure out.  BRCA1 and BRCA2 are only two mutations they've been able to pinpoint, and there are still families with significant history of cancers that test negative for this.  Basically that means there are other mutations causing cancer in families, they just haven't been able to isolate them yet...but they're working on it!  We were told that even though I tested negative,  Mandi will need to start being screened for breast cancer when she is ten years younger than I was at diagnosis.  This means she'll start having mammograms at the age of 29.  We have 13 years to find a cure people!  So my daughter-or anyone else's-never have to go through this. 

Awkward Family Photos

If you've never checked this website out, you must.  It is hysterical!  Awkward Family Photos.

Last weekend my amazing friend Dawnelle, took family photos of us for the first time...ever.  Yes, sadly, there is very little proof of my existance for the past 16 years.  One of my goals when I started working out was to get to a point that I felt comfortable being in pictures.  Of course now family pictures are a necessity, given the situation.  I also wanted to have them done before I lose all of my hair (although my boss bought me a killer wig...but that's another post).  Here are a few of my favorites.  And just to top it off...this is what I'm fighting to live for. 

Have I Mentioned That I Love My Surgeon?

No, not THAT way!  I want him to be my dad.  Or at the very least, come with me to every appointment.  He was so great and I wanted to do something nice to show my appreciation.  So what do you get a doctor who...SAVED YOUR LIFE?  Yeah, they pretty much don't make a gift or a card for that.  They really don't, I checked.  Anyway, I decided to write him a nice loooooong thank you note and am going to deliver some cookies from the Snohomish Pie Company.  I also made a box and am going to fill it with these breast cancer bracelets I've been making then he can give them out to his other breast cancer patients. 

I seriously want to call him and ask his opinion about my chemo options, but I think that might be a little weird.  I guess I COULD ask him when I drop off the thank you gift.  Hmmmm...does this make me a stalker? 

What's Boot Camp Got To Do With It?

Pretty much everything.  It's been  three weeks since I was able to attend my last boot camp.  I miss the workouts, but the people more!  They were such a great support system when I was first diagnosed and I'm bummed that I don't get to see them every day.  I will say that I don't miss getting up at 5 a.m. though.   I've been so lucky to have gotten to know such an amazing and supportive group of people!  On my last day of camp before surgery, I showed up and a bunch of them were wearing t-shirts that said "Fight Like a Girl" in support.  So awesome!





For the past year, I've been what you might consider a psycho boot camper.  I went Monday through Friday for 50 straight weeks-missing only three days in September because I had Vertigo.  The 5:30 am class (which was my class of choice) had a pretty regular group of people that attended.  As you can imagine,  I've gotten to know some of them very well and consider them good friends.  One of the avid campers, Kimberly, was diagnosed with breast cancer the day after me.  Can you believe it?  Although neither of us would like to see the other going through this, we both felt fortunate to have someone going through pretty much the exact same thing, at the exact same time.  What a blessing...and a curse.  I had t-shirts made for Kimberly and I that said "Cancer's Nothin'!  I Survived Peri-Lyn!".  Peri-Lyn is our trainer and was a huge inspiration and resource this past year.  I'm also afraid of her.  Just kidding.  Not really.  I love you Peri-Lyn!

I know that all of the hard work I put in this past year has prepared me for this moment.  Furthermore, if I hadn't lost all the weight, I'm not sure I ever would have found a lump.  So thank you Snohomish Boot Camp for changing and SAVING my life! 

Using and Abusing Your Nurse and Doctor Peeps

Thank goodness I have tons of medical resources in the form of friends and family.  I don't know how people get through this stuff without people who can interpret the information.  My aunt Diane is an RN.  My mother-in-law is an RN.  Jeff's stepdad Doug is an OB/Gyn, and of course I have access to the amazing nurses at Evergreen Healthline where I still get to call myself an employee (albeit a rather infrequent one).  All of these people have been instrumental in getting me information, interpreting information, and being advocates for me.  Of course I've also had Jeff at almost every appointment and he serves mostly as comic relief but has managed to retain information that I've completely missed.  We are all a great team.  I'm going to list a few of the medical people who've been there when I've really needed them these past couple of months.

Diane Johnson, RN
Yvonne Madsen, RN
Dr. Doug Madsen
Laura Main, RN
Carol Lange, RN
Debbi Grieser, RN
JoAnne Parr, RN
Denise Brown, RN
Dr. Gerald Kent

Sorry if I've used and abused you!  I'm sure it won't be the last time!

Second Opinion

Up until yesterday, I haven't felt the need for a second opinion.  When you first get diagnosed with cancer, everyone tells you to get one.  I didn't have that sense.  From the start I was confident in the treatment I was getting and with what I was being told.  I did a fair amount of research on my own and everything was in line with what I was reading.  I also had Dr. Kent right off the bat-who I want to come follow me around and answer random questions he was so great.  But, after my meeting with Dr. Nguyen, I got on the phone and decided I needed to talk to someone else.

Of course I have that initial feeling of guilt that goes along with this.  I don't want Dr. Nguyen to be upset with me because she is a nice person and I'm sure she's a great doctor.  I also adore her PA Donna, and don't want her to be mad either.  I know that it's silly to feel that way but human nature I guess. 

I have a second opinion scheduled for Next Thursday December 15th.  I could'nt get in to Seattle Cancer Care Alliance, so am going through the Providence Cancer Center in Everett through the Everett Clinic.  I'd like to go through Evergreen but my insurance doesn't cover it.  Besides, I've heard wonderful things from my cancer friends about the Providence center and the doctor I got in with, Dr. Jiang, has a pretty impressive background.  I'm only looking for an opinion on treatment, not diagnosis, so it should hopefully be pretty painless and straightforward.  If I like them, I may switch Oncologists all together. We shall see!

Sooooo Much Information!

I had an appointment with my oncologist Dr. Nguyen and her PA, Donna Kentley yesterday.  Let me just say, I don't like Dr. Nguyen.  She's very nice but has ZERO personality.  This brings me back to what I said in my earlier post about the medical profession.  You certainly want experienced and knowledgeable doctors, but they have to have a good bedside manner or it means nothing.  At least to me. 

Oncology-Donna Kently, PA-LOVE her!

I was given two different chemotherapy options. The first one is the tried and true used for many years combination of Adriamycin and Paclitaxel (Taxol).  Adriamycin in particular has some pretty nasty potential side effects.  Potential heart damage, higher instances of leukemia, uterine cancer, etc.  Ummm...not too appealing.  You also have to have it infused through a port implanted under the collar bone so they have access to a main artery since it's too toxic to adminster intravenously.  It's given every two weeks for four months. Sounds lovely!  Like I said, it's been used with great success for many years.

The second option is a combination of Taxotere and Cyclophosphamide.  This little cocktail has been used for five or six years with similar success but with less potential for long term side effects.  It also can be given intravenously every three weeks for three months, so a shorter period of time. 

Now, any reasonable person would think "why not do the option 2?" which happens to be what my doctor recommended.  Seems like a no brainer.  Here's what my issue is;  when I asked Dr. Nguyen why everyone doesn't do TC, she couldn't really answer other than to say "physician bias".  I wanted her to say it in a way that made ME BELIEVE it was the best choice for me.

 I know they can never give absolutes, but help me out here.  Tell me I'm the perfect candidate for TC and based on stats I'll do wonderful.  Don't just tell me that you prefer it with no explanation.  If it's been used for many years with success, should I go with the Adriamycin?  Or do I go with the one that doesn't look like it will damage my heart and give me another kind of cancer but they don't have many years of results to look at?  If anyone can help me out on this, that would be great!

Why I Am So Fortunate!

So here's the deal.  I am so lucky.  First of all, the area that I felt in mid October that prompted me to go in and be checked was not my actual tumor.  Yes, that's right.  What I thought was a suspicious lump was just fibrous tissue.  If I had not been aware and gone in, who knows where I would have been.

Also, the type of cancer I was finally diagnosed with, Lobular Carcinoma, accounts for only 15% of all invasive breast cancers.  Of those 15%, 95% are women over the age of 55.  Quite unusual for me to get this particular kind.  This may sound unlucky, but, usually this type of cancer tends to have multiple tumor sites and unless you're having regular mammograms (which I wasn't because I was under the standard age guideline), you don't find palpable tumors until they're more than 5cm in size.  So the fact that I only had one tumor site and it was only 1.8cm big, means I caught it very early.     

I am so fortunate that I went in when I did.  Given that it was already in one of my lymph nodes, if I had waited until I turned 40 to have my regular mammogram, who knows how far it could have progressed before it was diagnosed. Do your self exams and get your mammograms!  It's all about catching it early!

Post-Op and Final Diagnosis

So, my lumpectomy was performed on November 21st (Monday) and I was scheduled to go back for a post-op check the following Wednesday, November 30th.  I was told that I might have my pathology results back in a couple of days but given it was the week of Thanksgiving, my expectations were pretty low.  We went about the business of celebrating Thanksgiving, and I sort of tried to forget about things. 

By Monday the 28th I still hadn't heard anything.  I contemplated whether to call them or not and decided since it was already Monday, I wouldn't likely hear back until Tuesday and my appointment was for Wednesday anyway, so why bother.  I go back and forth with wanting to know everything and still wanting to live in a place with limited information so if it's bad I won't have to deal with it. 



Dr. Kent and I
 

 The crucial information I was waiting for was; the actual size of my tumor, the actual type of cancer, whether they got clear margins (the cancer free area surrounding the tumor), and whether my lymph nodes showed any signs of cancer.  All of these things determine my actual staging and treatment options.  All of the tests that they had done prior to surgery gave them a very good idea what was going on, but until the actual tumor was dissected they wouldn't know for certain. 

So, I went in to my appointment on November 30th with no information and I was quite anxious.  When I walked in, Dr. Kent was on the phone with pathology-not happy because he still had not gotten results.  This was quite unusual and created a lot of anxiety for me.  This is why I love Dr. Kent though; he told me he was not happy with pathology and had checked for my results every day while he was on vacation.  I thought that was so great!  I'm sure he does that for every patient but it made me feel like he really cared.  He wasn't sure what was taking so long but could see that they had to send my samples out for "special smears".  I was concerned by this and he told me it could be because they were seeing signs of two different types of breast cancer and needed to confirm.  He said I was healing well and answered a bunch of questions trying to make me feel better.  We left the appointment still not knowing.  I was quite emotional after that, but went to work.  Thankfully my bosses were both so understanding and sweet. I was able to get myself somewhat together and Kimberly took me to see Breaking Dawn.  

Later that day I got the call from Dr. Kent and it was not what I expected.

I was told I have Invasive Lobular Carcinoma (a more unusual kind of invasive breast cancer).  My tumor size was what they expected at 1.8cm, and my margins were clear (phew).  But...one of my lymph nodes was positive for cancer.  Crap!  Apparently I had a 3mm size cluster of cells in one of the four lymph nodes.  Another node showed some microscopic evidence of disease but not enough for them to consider it positive.  Thank goodness Dr. Kent had removed four nodes during surgery otherwise I would have had to go back and have what's called an Axillary Dissection (where they remove a bunch of nodes).  So that was good, but the whole lymph node positive thing was not.  Dr. Kent reassured me that my prognosis was still very good and I would do fine.  I was still a mess.

I called my oncologist and she told me that I was now a stage 2 and my chemo regimen would be increased from one treatment every three weeks for three months, to one treatment every two weeks for four months.  So basically I was diagnosed all over again with all new information.  The type of cancer I had was different, the nodes were positive, and my treatment was going to be more aggressive.  Not what I wanted to hear.  I spent the next several days processing this new information and trying to stay positive.  I knew I was still very fortunate and my prognosis was still great.  It just felt like a blow.  I was feeling very confident and now had to re-evaluate things and change my plan.

Next stop...Oncology and what comes next.

Surgery

Jeff, my aunt Diane, and I went to my initial pre-op consultation with Dr. Kent at Group Health in Bellevue on November 3rd.  Going in to the appointment I knew he was chief of surgery and I was in good hands.  It's so hard with the medical community because you want doctors who are smart and good at what they do, but you also want them to be caring and compassionate.  I was so lucky to get the best of both worlds.
After going over the formalities of diagnosis with Dr. Kent, he made it a point to look directly at me and say "you're going to be okay".  That did it.  I was a fan for life.  It was the first time one of my doctors said that.  It was crucial at that point to hear something positive so I could grab on and use it as fuel to move forward.  Being diagnosed with cancer-or any life threatening disease for that matter-is traumatic.  You feel like you're in this scary world all alone, even though you may have a tremendous amount of support.  I equate it to having a baby.  People can tell you before you get pregnant and give birth what it will be like, but until you actually go through it, you really don't know.  Anyway, having Dr. Kent and his staff treat me like a human being with a future was exactly what I needed at that time. 

After my MRI, I opted for the lumpectomy.  The plan was to remove one lymph node-called the sentinel node-and if that node was negative for cancer, the theory is it hasn't spread to any other lymph nodes and they don't need to remove gobs of them like they used to. 

Waiting for surgery to begin

Lymph nodes basically serve as a filter for your immune system.  They trap bad organisms (like cancer cells) and keep them from getting into your blood stream and into the rest of your body.  In the old days, they used to remove a large amount of lymph nodes (there are roughly 40 under each arm but hundreds throughout your body), which caused a lot of long term issues for women such as Lymphedema.  They discovered that they could get the same information by removing the sentinel node(s) and it was much less traumatic on the patient.  In my case, when Dr. Kent went to remove the sentinel node, he saw that two of my nodes were inflamed.  This could have been because of my recent biopsy or it could have been evidence of cancer.  He opted to take a total of four nodes and test them.  At the time of surgery he did a dissection and they were all negative.  He removed the tumor and I went home the same day.

I have never had surgery before (other than having teeth pulled) so I wasn't really sure what to expect.  Overall it wasn't a bad experience.  I did feel crappier than I thought I would for several days afterward, but was back to feeling normal about 7 days post surgery.  The incision to remove the tumor wasn't painful, but the area where they removed the lymph nodes was very uncomfortable.  It took about two weeks for me to be able to raise my arms without discomfort and I know it will take a while before it's completely healed. 

Next stop...post op and final diagnosis.

How It All Began...

Well it all started on Friday, October 14, 2011.  There was an area on my right breast that felt a bit odd.  Since I'd lost about 60 pounds in the previous 11 months, I initially assumed it was just a natural change in my body.  Being that I had just turned 39 and my mom had gone through a breast cancer diagnosis last April, I thought it would be a good idea to see my doctor about it.  I wasn't concerned since other than my mom's recent diagnosis, we have no family history of breast cancer.  Besides, given her age at diagnosis, hers likely had no genetic component.  So I made an appointment for the following Thursday. 

As it turned out, my daughter Mandi had an appointment for Tuesday of the next week and while with her, I asked the doctor to take a peek at my lump.  She felt it and said "it feels soft and squishy, which is good" but recommended I get a mammogram to be sure.  I still wasn't terribly concerned and made the appointment for a mammogram and ultrasound on Monday October 24th. 

This is where it starts to get real.  While having my mammogram (which I thought was a piece of cake by the way), the tech left the room, came back, and said the radiologist wanted more pictures.  Okay...hmmm.  Next I went in for the ultrasound.  Again the ultrasound tech did her thing, left the room, came back and said "the radiologist wants more measurements".  Ok...what's going on.  I asked her and of course she wasn't allowed to comment and said the radiologist would be in shortly to discuss it with me.  Now I was nervous.  I KNEW they saw something.  So the radiologist came in and said they wanted to get a closer look and have me in for a biopsy.  I asked him based on his experience what did he think.  He said "I'm very concerned".   

I left the appointment concerned but still thinking it may be suspicious but the odds were in my favor that it was nothing.  I went home and did what every potential cancer patient does-but should NOT do-and went straight to the internet.  Big mistake...HUGE!  I was terrified by what I read and of course focused on the worst case scenarios.  My biopsy was scheduled for Thursday, October 27th. 

I was very emotional heading into that appointment and when they said my husband Jeff couldn't come back with me, I burst into tears.  Suddenly I didn't want to be alone.  The nurses were very kind and reassuring and we went forward.  I was scheduled to see a different radiologist this time for an ultrasound guided core biopsy.  This is where, using ultrasound, they shoot a needle into the tumor sight four different times and extract samples. It was actually a lot less painful than it sounds. When the radiologist came into the room, the first thing she said to me was "I'm pretty certain it's cancer".  So, there you have it.  She still did not have specifics but based on the looks of the tumor, she had enough experience to know what she saw.  I asked if it was Ductal Carcinoma In Situ (which is what my mom had) and she said no.  That made me nervous at first because my mom's was stage 0, highly treatable, and non-invasive.  They performed the biopsy and Jeff and I met with the nurse to schedule an appointment with a surgeon.  They were going to proceed as if it were cancer, but still needed the biopsy results to confirm the actual type and specifics of the tumor. 

I spent the next few days telling our family and friends, crying, researching, and trying to come to terms with our new reality.  The worst part of the experience was the five days between being told by the radiologist that it was most certainly cancer, and when I actually got the pathology results.  By the time I was called with the results, I was elated by the "real" diagnosis.  I don't think the nurse who called knew what to do with me.  I was literally excited!  I was told I had Invasive Ductal Carcinoma.  My tumor was roughly 1.8 cm big, progesterone and estrogen positive, and HER2 negative.  This was very good news.  What it meant was my tumor wasn't very big (under 2cm is good), it was hormone receptive (which means it will respond well to hormone therapies), and it wasn't an extremely aggressive form.  Invasive Ductal Carcinoma is the most common form of invasive breast cancer.  Roughly 85% of women diagnosed have this type and the prognosis is very good.  The next step for me was a pre-op meeting with a surgeon and deciding whether I wanted to have a lumpectomy (where they remove the tumor and some surrounding tissue), or a mastectomy (where they remove the entire breast).  That was a much tougher decision for me than I thought. 

My initial reaction was to "chop them off!".  But, that creates it's own set of issues.  Recovery and reconstruction can take many months and can be very traumatic.  I was told that there was no difference in long term recurrence rates between women who had a lumpectomy with radiation, and women who had a mastectomy without radiation.  It was a tough choice.  I didn't want to spend the rest of my life waiting for a recurrence, but I also knew I would most likely do that anyway.  It took me a little while to make the decision and decided to wait to see what, if anything, the MRI revealed.

Thankfully, my MRI showed no additional signs of disease in either breast and no evidence of the cancer in my lymph nodes.  This was fantastic news!  I felt confident that I was at a stage 1 with a fantastic prognosis.  My surgery was scheduled for November 21st and I decided to go forward with a lumpectomy and sentinel node biopsy (using radiation they track which lymph node receives blood flow from the tumor first). My plan for after surgery treatment would be assessed once the tumor and node(s) were removed but it was looking like chemo, radiation, and hormone therapy.  I was okay with that-just tell me I'll survive!

Next stop...surgery.