Giving Back

All and all, I'd have to say this has been a pretty good week. After a bit of a rough start on Monday, I finished out the week feeling SO much better and even had the energy to go to the gym at work twice to ride the bike and do the elliptical. It felt amazingly good to be back in the gym again, even if I'm not allowed to do anything high impact just yet. My physiotherapist tells me my arm has been making gains in its range of motion, my hair is still attached to my head, and I have one more week of respite until round two of chemo. Life is good.

But what I'm most pleased about is that I was offered the opportunity at work to be the Honourary Team Captain for our Komen Global Race for the Cure Team. I've mentioned in earlier posts that I would love to be involved somehow with this year's race, and now I am. It's not like it's my team or anything, but I'm thrilled to be able to help with the fundraising campaign and be part of the committee that helps motivate people to join and, of course, donate. They asked if I would mind creating the official team page, including posting my picture, which will be sent to all staff and to our entire distribution list of ex-pats in the region. I figured having the big boss on the home page wouldn't hurt either, so I arranged a photo op to motivate the troops, to which he readily agreed. Being the vain person I am, I asked if we could do the photo asap before my hair falls out. Problem was, it was a crazy windy yesterday and we were out on the rooftop balcony. The wind is blowing my hair back with such force that I look nearly bald anyway! (Somehow the boss seems perfectly coiffed). It was a good thing I wasn't already in a wig or the cars would have been driving over it on Pennsylvania Avenue. 

On June 2nd, the day of the race, I will be in the midst of my fifth round of chemo, but I will make myself finish that race even if I have to change places with one of the kids in the stroller.  John and I signed up to walk, and plan on doing it with the kids, and I just want to take it all in at a leisurely pace and enjoy it. When you're running a 5K it's over in a heartbeat - there's such a throng of people to work through at the start and then you barely get a chance to look around before you're crossing the finish line.

So here's my pitch: If you're local, I'd love for you to join Team Canada and come walk/run the 5K with me, John and the kiddoes! (Use the discount code EARLYBIRD to get $5 off registration before April 13th). If you can't make it on June 2nd, or you're reading this from afar and aren't already a part of the race, I would really appreciate your support by going to the homepage and donating to the cause. You can click on my name and check out my personal page.  Every little bit helps! XOXO.

Sucky Symptoms

I'm happy to report that today is the first day that I have not been utterly exhausted and in significant "discomfort".  I was feeling kind of depressed yesterday because I was back at work and still fighting the fatigue and constant cramping that I had been experiencing for the past week, and was starting to think that my plan to work through the chemo was not going to happen.  I looked through my book of myriad symptoms and severe cramping was not on the list.  So far in round one of Michelle vs the Chemo Demons, days 4-8 have been the absolute worst.  Hopefully I am over the hump.

On a positive note, I also had my last visit yesterday with my plastic surgeon until after chemo, which should help ease a lot of the pain and stiffness from the expansions.  Now I can just let the tissue heal and expand on its own, until he does the final swap for the implant approximately one month post-chemo (once I have "recovered" from that).  Hopefully my temporary break-up with my plastic surgeon will allow me to spend some quality time with my physiotherapist so she can be more successful in breaking up the scar tissue in my arm and regaining some of my range of motion.

And finally, inevitably, my scalp is starting to get sensitive and itchy.  Yes, I know what this means.  Everyone has been telling me that my hair is going to start falling out about 2 weeks into chemo.  That's this coming Monday.  I've been trying not to brush it or do much with it, but I really doubt it will make any difference whatsoever.  I've been debating what to tell C.  Do I just tell him I'm cutting my hair and don't go into the details, or do I tell him I'm sick and that my hair is going to fall out and be gone for awhile?  I just worry about freaking him out.  He's pretty much oblivious to everything so far, other than I have a sore side and eat more "vitamins" than I used to.  It's funny that hair has played such a prominent role in my posts; it really seems rather trivial when you think about everything else that's going on.  Yet, I've read that for many women, losing their hair was one of the most traumatic events in their cancer experience. For me, it just strips me of all privacy.  Maybe I don't want the cashier at Target to know I have cancer, then again, maybe I won't care.

March Forth!

March 4th, the only day of the year that is a command, as well as John's birthday, so march forth we did!  I was set and determined for hubby to have a fun birthday no matter how tired and cramping I felt, so I sucked it up and we hauled it off to the Natural History Museum - one of our faves - for some morning fun.  We checked out the butterfly garden, and all the parts the kids love like the dinosaurs bones and mammal exhibits.

I said in my last post that I feel like a hundred year old woman, but in some respects I also feel like a toddler.  I needed a snack when the kids started to whine about being hungry, I could only last a couple of hours, and as soon as we got home it was straight to naps for everyone.  Well, except John, who was probably catching up on work of some kind or another.  When you think about it, spouses kind of get the shaft in this whole business.  I get all the attention and flowers, and he gets to do more house and yard work solo.  Not that what I'm going through is any picnic, but he has to work a full time job plus come home and pick up the slack on all the stuff that I'm unable to do right now.  He often deals with the medical insurance issues that come up since it's his work plan, and I know he's behind at work because he also tries to come to all the "big" appointments with me, and in the beginning there are just so many that are critical to the big picture.  So here, J, I am officially putting in in writing that I am grateful for all you do and would never even have made it this far without you!  Happy Birthday! We love you! 

Dinner at Dogfish Head Ale House

Technical Difficulties

I heard from several people that they couldn't leave comments without having a Blogger account which didn't sound right, so I played around in my settings and think I have solved the issue so that anyone can leave a comment if so desired.  Blogger had it sneakily set up that way as a default setting to "encourage" you to set up an account, I imagine.  If you encounter any further difficulties let me know - this is all new to me!  As always, thanks for your feedback and stay tuned. 

Freaky Friday

Just to bring you up to speed, I turned one hundred this week.  Wednesday, I was actually still feeling pretty decent.  My expander was still bothering me, but I even went into work to attend a seminar, and although I probably over taxed myself a little bit, it wasn't terrible.

Yesterday and today (days 4 and 5), have been a whole other story.  Remember Freaky Friday?  Well, instead of inhabiting Barbara Harris or Jamie Lee Curtis's body, I got Betty White.  Not even.  Betty is way more spry than I have been feeling.  Just total and complete utter exhaustion and weakness.  My oncologist said some people describe it as fatigue similar to third trimester pregnancy.  Ha!  I don't know about you, but my pregnancies were relatively easy.  Sure I was tired when I got home from work and often took little cat naps, but I went to the gym or walked right up until the week I gave birth and wasn't sick at all.  Other than appointments, I didn't have to miss a day of work while pregnant, but the thought of actually going to work yesterday or today is making me laugh.

I had nothing on the calendar today, so I got up and had breakfast with the kids at 6:30, read a few emails, and then went back to bed for half the morning.  I got myself showered, had lunch, forced myself to do my physio exercises, and then went for a little walk around the neighbourhood.  Please don't envision me power-walking or busting it down the trail.  Think of walking with your toddler and that is about my speed.  It just makes me feel so much better to get outside and get some fresh air; I have never been one to stay in the house all day.  It is very disconcerting to feel so unlike myself.  I'm a total weakling.  (And as soon as I'm done with this update, I will be returning to bed for nap # 2)! 

Thankfully, I have not been feeling any nausea.  Every time I eat something, I get these uncomfortable cramps for a few minutes after, but they seem to go away on their own, so I ignore them and try to keep on moving.  I have basically been eating my regular diet, although I guess I am anticipating nausea so I am probably choosing more bland comfort type foods than I might normally?  Could be worse. I am also trying to drink more water.  I have never been good at staying hydrated so I hope this is one routine change that sticks. 

I'm really hoping that this is my "dip" and I will start to feel better as the weekend approaches. I didn't want to compromise my family time feeling crappy, so my hope in starting treatments on Mondays, was to get it over with during the first five days and then be functional and fun for the weekend and upcoming two work weeks.  That was the plan anyway...

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?!