Drugs, drugs, drugs...

So, as I mentioned, the day after each infusion I have to take some kind of steroid and also go in for a Neulasta shot to boost my white blood cells.  I found out from the benefits specialist that Neulasta costs $9500/dose.  I go for 6 rounds of chemo.  You can do the math.  And that's just the post chemo "booster"!  I can't wait to see the statement of benefits for the actual chemo drugs.  I want to be quick to say that other than maybe a $20 co-pay, our insurance covers this 100%, but I'm sure this is not the case with everyone's plan, and it makes you wonder what people do.  Other than the lack of wig reimbursement, which seems to be an anomaly, we have excellent coverage.  I still plan on submitting a claim for my wig, letting them reject me, and then I'll appeal and likely lose, but I think it's important to make the point that the policy is lacking.  Squeaky wheel, right?

The nurse confirms that I've taken my steroids and gives me the Neulasta.  I tell him about my trip to the plastic surgeon for another injection and how I usually take valium and percocet to get through reconstruction days.  No problem he says.  Really?  I had a huge infusion of toxic chemicals yesterday, 2 steroids, a booster, and valium and percocet are fine to throw in the mix as well?  Great.  Oh yeah, and if I start to feel any nausea coming on I have two different prescription drugs which I'm now carrying around with me in my purse - just in case.  Now I know why old people have problems mixing up their meds!

I get my 60mls of saline injected and as usual I can't feel it while I'm there.  My plastic surgeon tells me I only have 20 more mls to fill the expander to capacity - yay!  Do I want to do 80ml today, or just come back for another small injection next week?  Go ahead, call me a wimp, but I figured first week of chemo I'd try to be as nice to myself as possible.  Some days I question my decision to do the mastectomy and reconstruction at the same time.  I still think in the end I'll be happy I suffered through them both simultaneously, rather than having to go back for a whole round of reconstructive surgery post-chemo.  But other days, (like today) I think it would be kind of nice to just let myself heal and concentrate on getting through the chemo.  All I can say, is thank goodness I didn't get the additional 20ml, because I seriously thought I was going to blow up.  I really don't want to be on any additional drugs, but I can't imagine getting through these days without at least the valium to ease the stiffness.  I went straight to physical therapy after the injection so she could torture me some more, and that was really all I could manage.  Honestly day two of chemo and I'm mostly suffering from my reconstruction injection than anything else, so hard to say if I've had any real chemo side effects yet!

Chemo - Round One

And we're off!  So, as someone wisely wrote me, the scariest part of the chemo is the fear leading up to it and not knowing what to expect.  So true.  I took my pre-chemo day steroids and drank at least the prerequisite 64 oz of water on Sunday, but I was still up pretty much all night worrying about it, and in the end it wasn't as upsetting or depressing as I had imagined.  You are basically set up in pods of four with one nurse responsible for each pod.  Luckily I was the first person in, so I got to ask my nurse a million questions before anyone else got there.  My particular drugs are all fortunately clear in colour, so I was happy not to have to see some red or blue nastiness coming down the iv into me.  The nurse said that one blue drug can actually turn the irises of your eyes slightly blue temporarily after treatment - yuk.  And, despite the fact that the port still kind of grosses me out, it made the whole IV thing pretty painless.  (I'm sure the pound of numbing cream I smeared on it the hour prior had a little something to do with it).  Jen - here is a pic of the port/iv system for you!  It just plugs right in there. 

To be honest, it's actually quite relaxing.  It did take 5 1/2 hours for the infusion, but they have wi-fi access, a TV you can watch with headphones, kitchen, guest chairs...  The first treatment or "loader dose" is the longest, so my next round should be more like 4 1/2 hours.  John came and hung out with me for this first time and was even able to get some work done.  As people started filtering in, most just worked on computers, read books, listened to music, or slept.  I was so tired from the night before, I slept for about an hour myself.  At one point a volunteer even came in with this psychedelic guitar and was serenading each pod.  He just travels around the country singing at chemo centers.  He said he spent a year "in the chair" himself and just wanted to share the love.  He handed out free cd's to everyone and said to download and share with whoever we like.  I don't know how he makes any money doing any of this, and apparently he is married with three children under ten, but it's pretty impressive.  I got a special song for being a first timer.  One old man even got up and was dancing with one of the nurses with his IV pole. 

Thanks so much to everyone who sent me encouraging messages throughout the day, including Jacki's "chemo angels".  My new e-pal Jacki asked her friends to send me some words of wisdom, so I received little notes of inspiration and helpful hints from her network of friends across the U.S. as well.  I am feeling very humbled by everyone's kindness I must say.  I had so many messages I'm still catching up on emails, because of course, as soon as we got home, collected the kids, and ate dinner I was off to a class at Life with Cancer called Look Good, Feel Better.  It just so happened that their course offering for this month was my first day of chemo, but I figured I'd better get in there because the next one wasn't for another month and I'd already be hairless and hideous well before that.

It was actually a really helpful class.  In addition to a free bag of make-up, a trained make-up artist gave us tips on how to highlight your eye lids when you lose your lashes and pencil on eye brows, and basically best accentuate your features when you look/feel less than stellar.  She kept mentioning that she worked for Bobbi Brown (I later discovered this was not the the Bobby Brown I was envisioning in parachute pants singing My Prerogative) so I was a little confused by her choice of endorsement for a while.  Anyway, I don't wear much make-up, and sunscreen and chapstick apparently don't count, (trust me, my sister has been trying to turn me into a girl for years) so I definitely found it useful. 

And that was my first day of chemo.  Other than the fatigue from lack of sleep the night before, I really didn't really feel any different than when I arrived.  I keep hearing that you start feeling more of the side effects around day 3, so again more anxiety about what's to come.  Tomorrow may still be a bit of a rough day though I would expect.  I have to go in for what's called a Neulasta shot in the morning to boost my white blood cells and help out my immune system while the chemicals in my body are killing everything.  Because it basically works its way through your bone marrow, it can cause bone aches in some people.  I also have another injection with my plastic surgeon in the afternoon, followed by a physical therapy session.  There's really not much time for convalescing in this whole process is there?!

Crazy Coworkers & Other Amazing People

It's official, my work colleagues have completely lost their minds.  My buddy loaded this giant "get ready for chemo" basket into my trunk today and the thing is incredible.  You'd think they've been set up on a street corner in DC somewhere collecting funds for months with all the goodies in there.  I'm not joking.  And I can tell that every item in there was thought about with a lot of love and attention to what people would need/want for chemo, such as pajamas, slippers, a super plush bathrobe and throw, a breakfast tray (for all those meals John is going to serve me in bed), a special cap to wear at night that collects my hair as it starts to fall out, moisturizing shea butter butter socks, an Amazon gift card to fill up my Kindle with lots of reading material for infusions, and last but not least, a Nordstrom gift card for any other last minute items I might need.  But wait, that's only the cancer part.  In addition, they also included some of my favourite feel good things in general, like decaf teas and coffee with an eco travel mug to drink them in, three different kinds of chocolate, a package of ginger scone mix, and a bottle of wine (do they know me, or what?).  One of our interns, who also happens to be a very talented artist, also designed a card for me which everyone signed.  I am ridiculously inept at expressing my gratitude, but I am amazingly lucky to work in an environment with such caring and thoughtful people. 



I've already mentioned all the wonderful food I am getting from my neighbours on a scheduled basis, as well as a special delivery of Canadian nanaimoes and butter tarts (and more food) arranged by my longtime Winnipeg gal pals.  Don't get me wrong, I love the swag, but what makes me all verklempt are all the good wishes and thoughts behind all this.  I love that I've reconnected with far away friends, made some new ones, appreciate the encouraging emails, comments on this blog, and the fact that any of you are following my story at all!  I was approached once again by a complete stranger with a generous offer to send me a beautiful complimentary head scarf for chemo.  Stacey reached out to me via this blog this week and told me about her work as a Good Wishes Ambassador in memory of her friend, and mother of three, who passed away from Triple Negative Breast Cancer last year.  It's people like this that I find so inspiring.  It's this amazing invisible network of goodwill you never knew existed.  I sincerely hope that when I make it through chemo (and beyond) that I will figure out a way to volunteer, give back, or pay forward all this good karma I've received.

I'm getting a little ahead of myself, considering I'll still be in treatment, but I'd really like to be involved somehow with the D.C. edition of the Komen Race for the Cure on June 2nd.  Being part of a team (even if I have to walk), volunteering, raising funds, something.  One of my work colleagues attended a planning meeting for the event recently and brought me back a t-shirt.  She got a white one, but was told by the organizers that I needed to have a pink one.  Love how I'm being considered a "Survivor" already, only 2 months in.  It made me smile. 

More Appointments

I had to take the day off today to fit in my four appointments.  First stop - my breast surgeon.  She basically said everything looked like it was healing well, and that I don't need to see her again for six months.  I had a few more questions to ask about my post surgery pathology report which we hadn't discussed in the first post-op visit.  Her answers left me a little unsettled, but I'm starting to get used to that.  I don't feel like I'm going to die any minute like I did when originally diagnosed, but I have this feeling that I'm going to be looking over my shoulder for the rest of my life, waiting for something to rear its ugly head.  I repeat, I'm super happy that I'm only stage 1.  It means my tumours were small and there was no lymph node involvement.  The negative parts to the diagnosis are that my specimens were grade 3 which means they are fast growing.  My Ki-67 test, which shows how fast the cancer is growing, also confirmed this with a score of 34% which is considered "high". I also found out that lymph-vascular invasion was found locally in the breast tissue during surgery.  What that means is that cancer was found in the blood vessels and lymph channels in the area they took out.  Luckily it did not spread to my lymph nodes and makes me feel like the full mastectomy was indeed the best choice for me.  But, it doesn't necessarily answer the question about the vascular invasion (blood vessels) which is part of the reason I have to have chemo to make sure they kill everything that could be floating around in there.  The reason for the targeted hormone therapy in addition to the chemo, is my HER2 status, which is positive.  HER2 + breast cancers tend to grow faster and are more likely to spread or come back as compared to HER2- cancers.  But, HER2+ breast cancers respond very well to a drug called Herceptin which is a fairly new drug, but apparently has had amazing results in clinical trials.  So, a little more focus on the negatives this time, but it actually makes me want to get on with the chemo that much quicker and continue the war.

My second appointment was fairly uneventful.  You may recall I had to spend an extra night in the hospital because I couldn't void my bladder completely.  The urologist checked me again and this time there was nothing remaining in there so he deduced that it was all the post surgical drugs making my bladder "sleepy".  He told me to have a nice life, ensured me that I did not have cancer of the bladder, and I was on my way. 

Appointment number three was my post-op medi-port check.  The nurse thought is was healing really quickly and she peeled off all the surgical glue/dissolvable stitches which actually made it feel more comfortable.  I think it looks like ass, but she said because I'm fair that it's going to be "colourful" for awhile and because I'm a little bony, it's going to stick out on me a little more and be more obvious.  It's also still tender, but apparently that is normal as well so I was getting no sympathy from the port lady. In fact, she told me some people have been known to get their port inserted and then use it for chemo the next day.  The whole thing grosses me out so I try not to even picture it. 

My last appointment of the day was physiotherapy.  My physiotherapist at Vienna Physiotherapy Associates is super nice, and to tell the truth I don't mind going there at all.  Sure it's sometimes difficult to do the exercises because my arm is so tight, but they let you lie there on the table with a hot pack, massage my arm and shoulder blade, stretch out my arm and allow me time to do the actual exercises that I never seem to have the time to do at home.  Then it's back on the table for more rest and an icepack.  Compared to my life of late, it's like a trip to the spa.

Back to work

Well, as I mentioned, the original plan was to start chemo this week, but the holiday made it hard to find a free slot, so I decided to go back into work for a few days instead.  I don't know if I've shared this already, but my employer doesn't have any short-term disability.  You can use your banked sick and vacation days, but unfortunately I used up pretty much all my accumulated sick days during my two maternity leaves because I figured - when will I ever need these?  Use them or lose them!  Well, this is hardly something I anticipated, so I gambled and lost mine.  Not that I feel the least bit sorry for spending more time with my kids as infants, but maybe I might have saved a few more sick days had I the gift of foresight.  I have about 9 days of vacation left, which I'm going to run through pretty quickly, particularly if chemo goes poorly, but keep your fingers crossed. From now on my employer is allowing me to work as much as I'm able, and I just record my hours on time sheets instead of getting my regular salary.  This is great for having the luxury and job security of taking time when I need it, but not so great in the sense that I don't get paid on the days I don't work!  In my mind right now, the plan I'm hoping to go with is to take the week of chemo off, go back to work for two weeks, repeat.  If I feel better than I anticipate during the chemo week, maybe I can work from home a few days, but it's just going to be a play it by ear kind of situation.  Luckily my work colleagues are awesome and very supportive. 

Anyway, I actually enjoyed being at work this week.  3 days was perfect.  The only problem was the fatigue.  This was the first week I didn't have an hour nap over the lunch hour!  I usually take a valium in the morning to manage my stiffness, but they do make me very drowsy.  Tuesday I was completely beat by the time I got home.  Wednesday I skipped the valium and just took Ibuprofen, but it didn't seem to make much difference.  I fell asleep on the couch at 7:30pm and apparently it took John four different times to wake me up and encourage me into bed.  I actually brought a blanket and little pillow into work thinking I might take a nap under my desk during lunch time, but I never did.  Any Seinfeld watchers out there?  Remember that episode where George sets up his office under his desk, takes calls from under there, and basically lounges around and sleeps?  Maybe I need to think about this a little more...

Normal Weekend?

So the bandages are off the port now and you can have a sense of what it looks like.  It's about two inches below my collar bone.  Right now it's still clearly bruised, and I think the shininess is from the fancy sutures they have on there that will eventually dissolve on their own, but once the tenderness and lovely shade of yellow begin to fade, I don't think it will be that big of a deal.  (Don't worry, I won't be showing you the other side)!

Today was a holiday, but I couldn't resist the temptation to visit with my plastic surgeon and have another 60cc's of saline pumped in.  I actually snuck a peek at the needle today, and that thing is huge!  This time I was smart and pre-medicated, so it wasn't all that bad, but I find it gets worse as the day goes on.  If I didn't know what it was, I would think I was having a heart attack.  Your chest gets super tight, and then it starts to move down into my lower back and arm.  Valium is my best friend today.  My next one is the second day of chemo - that should be fun!

Other than that we steered clear of cancer related activities and tried to have a semi-normal long weekend.  I am still kind of obsessed with trying to get everything organized and in place before chemo.  We got the boys haircuts, I re-organized the baby's drawers so all the clothes in there actually fit, I want to buy a million diapers and wipes in bulk, and then I decided we all needed to go to the open gym at the Loudoun Sports Bounce so I could see if C would like to have his birthday party there in April.  (You can never book too early)!  I clearly am not going to be inviting a gaggle of four year olds over to my house, planning fun crafty activities and baking a fondant Batman themed cake this year, so it's definitely the low maintenance party route for us.  And really, it's what he wants anyway!  I may be popping anti-nausea meds and sporting a chic head scarf, but I will be doing it sitting on a bench while C runs around with his buddies and the staff does all the work...

Sports Bounce

Fresh Haircuts

A Wig and A Tea

Well, I finally did it.  Bought the stupid wig this morning.  I named it Lise, and it will stare down at me from atop her little stand on my dresser, each night before I go to bed.  The sales lady was wonderful, but I felt like I was on an episode of "Say Yes to the Dress" and she was waiting for me to have this teary moment where I just knew this was the one.  In the end I chose one that is a little darker than my regular colour, although when we went outside it did seem a lot lighter.  From what I've read, your new chemo hair often comes in a little darker, and often a different texture, or curly if you had previously straight hair - hello)!  Maybe this darker colour wig will help ease the transition.  I actually think it looks red in certain lights.  The thing I need to get over is that everyone who knows me will know it's a wig - duh.  There's no getting around that.  It will be a different colour, and my hair will be about twice as thick.  But, if I met someone for the first time, I honestly don't think they would know it's a wig.  Unless of course it blows off on a windy day, that would be troublesome. 

And, when I arrived home from the wig store my underhair had arrived in the mail from Jacki, so now I also have an option for covering up my melon with a hat!  Very happy.  I think it will look splendid with a Winnipeg Jets cap.

After a quick nap, mom and I headed over to my friend Nicole's house who was hosting a little tea in my honour with a bunch of the neighbourhood ladies.  It was super sweet. We sat around chatting, drinking tea, eating yummy snacks and just catching up with each other. Many of them hadn't seen me in person since my surgery so it was nice to visit with everyone again and just get out of the house and do something social. 

 Me & Mom