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

A Port and Crazy Hair

Well, my mediport is in.  It's on the left (non-mastectomy) side, so now I'm feeling tender on both sides - fabulous!  I'm actually finding the spot where the port was inserted is less tender than the small incision they made at the base of my neck where the catheter was inserted into the vein. I have to keep it covered and can't shower for 36 hours, then I remove the dressings and apparently the stitches dissolve on their own and I'm good. The whole point of this is to provide a less intrusive way to administer chemo, so I don't have to undergo a million needle pricks over the course of the year.  I can't show you how it looks right now as it's still covered, but it's raised up from the skin more than I imagined.  It was described to me as feeling like a nickel under the skin, but right now it looks more like a grape!  Maybe it's just the swelling?  We'll see.  I also had my first physical therapy class yesterday, and it's left me a little stiff so I'm a bit of a physical wreck today. 

I basically passed out as soon as we got home from the mediport procedure. We then headed over to the American Cancer Society in the late afternoon to check out my free wig options.  This is a very kind service from people who have donated wigs, but it actually left me very depressed.  I basically had two choices that even remotely worked for someone under 60, and they still screamed wig.  I can't imagine wearing them out in public, let alone to work.  They just may be staying with the ACS for the next recipient.  Remember those barbie-like blond heads when we were kids that came on a pink stand and you could style their hair?  I used to love that thing!  I'm like a ridiculous human version here:

Red head anyone?

Oh, and other than the surgery and the bad hair day, we also got confirmation today that we will get absolutely no insurance coverage for the cost of a wig.  According to almost everyone you speak with the majority of insurance companies will cover the cost of a wig as long as you have a prescription from your oncologist (which I do).  The benefits coordinator at my oncologist's office was so shocked that she offered to call herself to confirm for me - still a no go.  And its not like we have lousy insurance, it's actually very good.  But, on this one point, Anthem BCBS of CA - you suck it. 

Valentine's Day

John, being the romantic that he is, stayed home from work today.  We started our enchanting day in a two hour chemo prep class, followed up by a trip to the plastic surgeon, and finally a wig consultation.  I mean how romantic can you get?!

I actually found the chemo class to be very useful in some respects.  There were a lot of little things I didn't know, like I can't get a regular dental cleaning during chemo, I have to start using toothpaste for sensitive teeth like Sensodyne, I shouldn't be the one to clean up after the dog (finally a perk!), and my nails may turn a dark colour.  The bad part about the class is that they are also obligated to tell you every possible negative side effect, even if very few people will experience them. Some people are all "knowledge is power" and they want to know everything.  I'm more of a store that in a binder on the shelf in case I need it kind of gal.  It's like all those books on childbirth.  I finally forced myself to read the chapter on delivery, which I had successfully avoided for nine months, basically the day before I gave birth because sometimes all that stuff just freaks you out more.  Besides, isn't that what the doctor is there for?  Anyway, the facilitator was excellent, we did take away lots of information, and even a couple of coupons!

My trip to the plastic surgeon - not as fun.  Today was my first saline injection into the expander.  He injected 60cc's (same as MLs I think).  I didn't feel the needle go in at all, but I could feel the saline getting forced in.  It wasn't uncomfortable, just a strange sensation.  Great, I thought, this is going to be easy.  We made our appointment for the second injection a week later and off we went.  By the time we got out to the parking lot I was already starting to feel it.  Owwww!  It's like something stretching your skin from the inside.  No, correction, it IS something stretching your skin from the inside. Think Sigourney Weaver in Alien. Let's just say, even with the valium and the percocet, it was a difficult night.  Maybe I need to reconsider this whole reconstruction thing.  Do they really need to match?  Maybe a "little sister" would be just fine.  An added sock for special occasions?  Food for thought.

Which brings me to the last dreamy stop on our Valentine's tour - the wig shop. As I mentioned in my last post my new friend Jackie is lending me her "underhair" which is kind of like a skull cap with hair attached to it that you can use with any hat.  I think this is going to be great for around the house, running errands and everyday stuff because you can just wear it with a ball cap or a sun hat and who will know?  I also think it will be tons cooler than a full wig in the summer.  That being said, I think I'm still going to need a full wig for work, hence my first consult at this wig store, which I didn't know existed but is about 5 minutes from my house.  The woman was fantastic and has actually been wearing wigs since she was 15 years old.  I would never have guessed that she was wearing a wig.  We tried a couple on, but most of the ones she had were brunette so they made it that much more difficult to try to think about it looking "natural", particularly at the hairline.  The other thing is that I have very thin hair so all these wigs feel strange to me because I'm getting about twice the volume of hair! Albeit thick, here's one I thought the cut and length were cute (obviously she would try to match my natural hair colour as much as possible). I actually think I look like my sister Jennifer in this one:

 This one is hysterical.  She was trying to match colour at this point, and kept telling me to ignore the style, but all I could think of was Dana Carvey in Wayne's World:

Anyway, this was my first trial, but I can't procrastinate too long as my hair should fall out about 2 weeks into chemo so I've got 3, maybe 4 weeks?  The store owner had a new shipment of wigs scheduled to arrive soon that she thought might suit me so I am heading back in on Friday morning.  I also have an appointment with the American Cancer Society tomorrow which apparently gives out one free wig to all patients undergoing chemotherapy.  I have a feeling that the free wigs will be a little Halloweeney but it's still pretty amazing that they offer the service.  To give you an idea, the prices of the wigs I was looking at were nearly $500 and that was for synthetic hair.  I can't imagine what the human hair ones cost.

Tomorrow is also the operation for my port which I'm a little nervous about, but I guess I should be used to this by now.  It's more the idea of having a quarter-sized disc tapped into my vein under my skin for a year that freaks me out.