Merry Christmas!

Judy gets me every time; hope your holiday week is filled with food, family, happiness and love!

http://youtu.be/5g4lY8Y3eoo

Uncertainty

So every year I have a stack of movies I watch in the weeks between Thanksgiving and Christmas.  Typical holiday-type flicks: It's a Wonderful Life, Home Alone, How the Grinch Stole Christmas, White Christmas, The Santa Clause, and The Holiday. Another that I always watch is The Family Stone, which I love because of the giant family and the complicated dynamics between each member.  In the movie Sybil, the mother to a handful of grown children, has recently found out that her breast cancer (which she's battled in the past with a bilateral mastectomy) has returned.

I've watched this movie every year since its debut almost a decade ago, and of course, this year it hits home. I cried at all the parts I cried at before my diagnosis, but this year as I watched, a red flag was raised. What if my cancer comes back too, and what if we don't catch it in time to have the prognosis I had this summer?  I know the chances of it returning are statistically in my favor, but there's still those single-digit percentages that the cancer will return. I've been doing a great job not thinking about that happening, but I'm certainly not immune to it.

So what do I do?  I can't obsess over it and go into every appointment with fear or over-analyze every ping of pain I feel. No one has time for that! All that I can do is be aware of major changes, see my doctors as they suggest, and live the healthiest life I can. That's all any of us can really do, right?  No one has immunity when it comes to cancer; it sees no difference in race, class, gender or birth order.  I just hope that the battle I've already gone through wins me points if there is ever a round two.

Terrific Lady Day

Tis the season for baking, shopping and being oh so busy!  Sorry for the lack of updates.  Quick rundown: last week I met with a group of ladies who had all been diagnosed at 40 or younger.  Quite the difference from the group I've been meeting with through United.  We had a great discussion and it was so nice to commiserate with ladies my age.

2013 has put my family through the ringer, so I've been thinking about how I plan to start fresh in a few weeks.  Step two: lopping off and donating my hair (step one was joining a gym, which I'm loving so far!).  You heard it here first - the mane is now a little bob :)  I went into the cut feeling ready for it, keeping in mind how lucky I was to not go through chemo, unlike a lot of other women.  I hope my hair can make a nice wig for one of those ladies!  

Total donated: 8" :)

I had a quick appointment with my plastic surgeon after my hair cut to check in on my new boobs.  All is going well on the healing front - swelling is pretty much gone (we'll check in again in 6 weeks), and the incisions are looking great. She addressed the pain I'm having in my arm and thinks it should go away eventually. I'll just keep doing my stretches and hopefully it'll be soon!

ACS Newsletter

I'll update on personal matters later tonight or tomorrow but wanted to pass this on from the American Cancer Society; all are great, inspiring reads. Also, on the awareness end of things, be sure to check out the article on knowing your breasts.

Hope everyone's having a great week!

Thankful

Tis the season to shop, eat, be with friends and family, but most of all: be thankful.  I'm usually pretty aware of the things I have in my life that others may not.  I was lucky enough to be born into a very loving family, in a country that, among its shortcomings, offers a relatively safe and comfortable place to live and be a young, working woman.  I get to vote, choose who I marry (hey there, Jas), and at the end of the day, have the peace of mind that I don't have to worry about where my next glass of clean water is coming from, or how to cure my hunger pains. I live a pretty cushy life.

In the past I've completely taken my health and body for granted.  After my scare with breast cancer, I have a whole new level of respect (and thanks) for my physical and mental health.  I, unlike many other survivors, don't wake up every morning with my first thought being "I had cancer." Even when I'm flashing, I don't think "I'm hot because of the Tamoxifen, and I'm taking Tamoxifen because I had cancer." I don't think "cancer" when I stretch the muscles in my chest/arms or accidentally run into something because I don't have feeling in my boobs (it happens more than I'm happy to admit).  When I do think about it, it still seems a little too crazy to comprehend.  Like it was all a terrible dream, except I have the scars to prove that it wasn't (maybe I should seek therapy?!).

I'll never ever forget the fact that I had cancer, but I think it's time for me to move past it.  I'm beyond happy to talk about my experiences if anyone asks; however, I feel that dedicating this blog to cancer is facing it in the wrong direction.  I need to write about living life despite having cancer, to give others hope that they too can overcome the hurdles and come out the other side healthy, cancer-free, and yes, even thankful for the experience. 

I plan to continue to update you fine folks of any support group meetings, doctor appointments, or general aches and pains I have (if I have to deal with it, you're going to know about it), but I'll also be writing about other things going on in my life.  If that means I lose readers (all three of you), I want to thank you for sticking with me over the last five months.  I hope I was able to raise the awareness you have about your personal breast health (health in general!), or encourage you to spread the word about early mammograms.  It's never too early to detect and start treating breast cancer! 

Many thanks; I hope you have a wonderful holiday season!
Cassie

Better Things

Well it's been just over two weeks since I had my tissue expanders replaced and now it's time for me to really help people.  A few months ago I was asked to be on a Breast Cancer Patient Advisory Counsel (PAC), and I said "yes" because in the beginning, my Care Coordinators Lynnae and Carrie (who I attribute much of my sanity during that time to) set me up with a girl in Boston, who had also been diagnosed at 28.  She was finishing up her 5 years as I was starting mine, but it was beyond comforting to talk with someone who knew exactly how I was feeling (each woman who goes through breast cancer has their own, unique story, but I was able to relate to her better than the women I spoke with who were in their 50's and 60's when they were diagnosed).  As soon as I hung up the phone with her, I knew I wanted to be that someone on the other line offering comfort.  Being a part of this PAC is my way to improve the care that newly-diagnosed women are receiving. 

My first meeting was last night, and it was kind of a "passing of the baton" meeting.  Each year in the fall, a few new women join the PAC and the women who have already served their two years leave.  We went over a summary of everything they accomplished over the past two years (The biggest and most important, in my opinion, was creating the Care Coordinator position. I cannot imagine not having Lynnae/Carrie to go to!) and I'm so excited to see what my group comes up with!

Weekend Update

I had a post-op appointment on Thursday with Dr. Heinrich, who was pleased with how my healing is coming along. The swelling I saw just a few days after surgery is almost completely gone (as is the bruising), and the best part of all: I can sleep on my side again! After 4.5 months of sleeping on my back, I've finally made it through a few nights of not waking up at once or twice during my (when I'm lucky) 7 hours. Also, Jason can finally spoon me again! It's glorious :)

Dr. Heinrich also cleared me for physical activity so my sister Rachel and I took a lap around Lake Como to celebrate (I was allowed to walk before, but we were short on time).

Teaser for later in the week: Patient Advisory Committee

Dramatic

As expected, the swelling has minimized significantly and the fears and disappointment I was feeling just a few days ago was all way over dramatic. I'm still not looking the way I'd imagined but it's crazy how far along things can come in just a few days.

The pain is more of just an irritation now, although bending over hurts (thanks gravity) and I'm still not supposed to lift anything over 10lbs or raise my hands over my head (making showering and getting dressed super fun).  I'm at home again today so I'm going to see how things go just taking a few ibuprofen.  The major pain meds put me into a fog and there's no way I'd be able to operate at work tomorrow while on them.

Aside from the "pain," I've been feeling kind of itchy, and not where the incisions are either.  Just the skin, kind of where a tank top would hit.  I thought maybe the skin was stretching but that doesn't make sense either - that's what the expanders were doing.  I'm sure the nerves were irritated while Dr. Heinrich was in there swapping things and that's why I'm getting that sensation.  I have to ask her about it at my post op on Thursday.

That's all for now folks, time for a nap :)

Post-Op

I made it through; surgery Wednesday morning went fine (although we started an hour late; drivers in MN always forget how to drive on the day of the first snow, and Dr. Heinrich was stuck behind a few accidents on her way in). I woke up after the surgery super fast, ate a few graham crackers and I was on my way home. Jason got me set up in bed and I happily slept my way through the afternoon/early evening. My sister Rachel stopped by later in the evening and we chatted for awhile, and I was back to bed around 10:00.

With all of the excitement over the past days, weeks, months leading up to Wednesday, I'd neglected to really imagine what these first couple days with my new boobs would be like. I'd envisioned beautiful, perky new boobs that look great no matter what I'm wearing. When I finally got the "go" to remove the dressing yesterday, I had quite the reality check: they're swollen, still marked-up from the morning of the surgery (even after taking a shower), and are looking a little lumpy.  They're much softer than the tissue expanders, but I almost prefer how they looked Tuesday to what they look like now :(

I'm trying really really hard to remind myself that the swelling is expected to last a few weeks; that somehow, under the "mess" I'm seeing, there's a very nice set of reconstructed breasts. I'm on the same meds as I was on for surgery #1, which means about 30-45 minutes of awake time to 3-4 hours of sleeping.  I'm not sleeping through the night, and not because of the pain, but because I think my body is just done being rested.

I had a lovely parade of visitors yesterday and I felt great (although drugged) to be in their company again, but now today I'm feeling emotional; sad that things aren't looking the way I'd imagined.  I don't want to do another surgery, but then I don't want to look like this for the rest of my life either. Keeping ice packs near me non-stop; I'm determined to minimize this swelling sooner than later.

New Boobs Day

It's like waking up on Christmas morning (literally, it even snowed last night) - excitement has now beat out nerves in a 97% to 3% landslide.  1-2-3-GO!

November 5

It's the night before my second (and hopefully last) surgery; a day I've been looking forward to since I heard the dreaded "you have cancer" diagnosis from my surgeon. I'm finally here at the finish line; tomorrow's surgery is the last big step in getting rid of the cancer and getting me back to "normal." From here on out (God willing), the only thought of this experience will be the tiny little white pill (tamoxifen) I take each night before bed.

I went back and read some of my early blog posts and I'm so happy that I decided to write all of this down.  Somehow I'd forgotten things, major things, that were a necessary part of the process (i.e. the dread I felt when telling my family and friends the diagnosis; the crazy sensation of drain tubes being removed, etc.).  There's good and bad there - I don't want to forget all that I've been through because it reminds me of how strong I am, but I think time is softening the details a little (maybe a coping mechanism?). I have to say though - the time leading up to surgery #1 was way scarier than the time leading up to surgery #2.  I'm not twitching right now, and I'm 91% calm and collected (the list of things to stress-clean tonight is much shorter than last time ha).

I've come a very long way and have been through hell. I hate that I know so much about the disease, that being pricked with needles has become routine, and that I'm part of a "club" I never wanted to join. I'm ready to not be terrified when wondering if the cancer will come back (something that might take years to get over); to not wake up in pain because I'd accidentally rolled onto my side in my sleep; to feel confident in my clothes again. I am so ready.  

Cancer, you've been a very unwelcome shadow in my life for too long.  You've ruined the plans I had for starting a family (right now, anyway), you've given me physical and emotional scars that will never go away and you've been a major contributor to an already terrible year. You've shown me paralyzing fear in the "ignorance is bliss" life I'd been living. Any tears I might cry will be out of joy at your absence; please never return.

"Breast Reconstruction" vs. "Boob Job"

This article is so perfectly written and so well-timed, I couldn't resist sharing.  FYI, I'm guilty of calling it a "free breast cancer boob job" too; it's the only part of having cancer that doesn't make me feel like I'm drowning.

I'm OK with my feelings of excitement toward it (even if there's a tiny bit of nervousness there too).

Wednesday

By this time next week, I'll be resting comfortably on my living room couch with my new boobs (and Jason!) to keep me company.  ONE WEEK!  I can finally answer "When's your surgery again?" with "Wednesday" and people won't ask for the actual date. I've been counting down for some time (sorry), and today got the following reminder on my phone:

My "event" is just a week away (as if I'd need the reminder, ha)!

Total side note: friends/family who are nurses, this is for you.  I had a second pre-op appointment on Monday to basically make sure I was alive before the doctor could sign off that I was good to go on surgery (my hemoglobin, kidney function and potassium levels are all normal). The doctor came in (not my regular), sat down and started going through my information: current medications, past surgeries etc.  Here's a rundown of the conversation:

Dr.: "What surgery are you having next week?"
Cassie: "Breast reconstruction."
Dr.: (pause) "Why are you having breast reconstruction?"
Cassie: "Because I had a bilateral mastectomy in June."
Dr.: "Why did you have the bilateral mastectomy?"
Cassie: "I was diagnosed with breast cancer."

Now, I'm not saying (at all) that it's the doctor's fault for asking these questions (although I wonder if she saw how old I was and thought maybe I was getting new boobs for fun?).  I'm curious though, why none of that medical history, pretty major stuff, wasn't on my chart?  Especially since I'd had the pre-op for the mastectomy at this same clinic?  They know I had once been taking pre-natal vitamins, but they skip adding cancer to the list?  C'mon!

Ten

Ten days!  That's it, the time has finally come where I can say "surgery is next week!"  Jason and I met with Dr. Heinrich on Thursday to go over details of the surgery.  We talked about the size of implants I'll get (she'll test a few out before sewing me up to see what looks the most natural), what I can expect for pain (I'll be sore for a few days) and how it'll affect the progress I've made with my physical therapy (should actually make things better).  She said I'll be swollen for a few weeks, and I'll have to wear a compression bra of some sort to help with that.  I'll do whatever she says as long as it means I can get rid of these expanders! 

Yesssss!

Flashing

I know I've written about this before and it probably sounds like I'm complaining, but keeping in mind the fact that I'm hoping to help others, I'm writing this for more for educational purposes (I just love how I justify my complaining ha!).

I think the tamoxifen has finally kicked into high gear; the hot flashes have gotten a bit better (or is it the major drop in temperatures we've had the past week?) and my periods have been further spread out than usual.  I'm so happy the flashes have gotten better on their own; my oncologist had suggested I try an anti-depressant to keep them under control, and I politely declined. Not the right option for me - I'm not a fan of covering up side effects with another drug that could give me more/worse side effects. I still have them, just not as frequently and they're not as intense.

It's a good thing too, because when they're bad, all I can do to keep my sanity is stop what I'm doing, roll up my sleeves and pants, take off my shoes, and fan myself with something.  I'm sure my co-workers think I'm nuts, but it makes them tolerable.  Once the flash is over, I get a sweet case of the chills from my body trying to balance out the change in temperature.

I should be assigned my own weatherman, sheesh! Mantra: having flashes is better than having cancer. Repeat 400 times.

NBD: 14 days away!

Countdown

Three weeks to go; excited to get somewhat back to normal!  No more pain (I hope), no more rock-hugs to my friends/family, no more covering the lopsidedness with my hair. 

I am so beyond ready.

Huge Success!

Yesterday a team of 12 awesome friends and family joined me in the Making Strides Against Breast Cancer walk.  It was a gorgeous, crisp fall day and the event had a great turn out! 

Here's a general breakdown on how much money was raised:

• Personal Fundraising: $1,160
• Team Fundraising: $1,950 (plus the contributions of three new team members who joined the day of)
• Total raised by the 1,492 participants: $187,058

It's crazy how generous people are, and it's so great to know that the money is going to such a good cause.  Here are a couple snapshots taken from Julie (thank goodness she was on top of it because I certainly wasn't!):

Top: Team Schober! 
Bottom, left to right: my sister Erin and I; Jason's sticker; Julie (the photographer) and I

Great way to start a Saturday :)

NBD Countdown: 24 days!

Weekend Wrap-Up

I know I rave and rave about how amazing my support system is (I know that I'm a very lucky girl) but I just can't stop when they've helped my Making Strides Against Breast Cancer team raise $1,270!  Wonderful job everyone!

I know I kind of left a teaser about my BRCA1 and BRCA2 test results (sorry!); they came back negative, which means the reason I got cancer was just the luck of the draw.  While it's a little unsettling to not have a definite answer why, it's wonderful to know that the women in my family are "safe" (I use quotes because they could be "lucky" and get random cancer too (knocking on wood that it never happens)) and I get a little peace of mind knowing that my risk of ovarian cancer isn't elevated.  It is what it is I guess; there's another gene test we can do, but it opens the Pandora's box of diseases I'd be susceptible to (they're diseases we can't watch for or prevent), and I'm not sure I want to carry that knowledge around every day.

Ashley made a great point that technology in this area of medicine is developing so quickly that it's not impossible there's another breast cancer-causing gene out there that no one has discovered yet.

Anyway, I hate to come back to this because it's probably so boring to read about, but I'm still having some pretty intense muscle pain.  The exercises my PT showed me a few weeks ago definitely stretch the muscles, but they're not taking away any of the pain/tightness.  I even went as far as calling my surgeon's office Friday afternoon to see if it's normal to feel this way.  Bad news: it is.  Good news: the nurse assured me I'd feel much better after New Boobs Day (31 days!).  I'm going to bench myself for the remaining 3 kickball games we have and really try to watch what I'm lifting, drink a ton of water, and continue stretching.  I can handle 31 days!

It's October!

I have to start out by saying how awesome my family, friends and coworkers are!  In less than a week we've blown past my initial fundraising goal of $250 and are sitting at $495 with 11 days to go!!  That's $5 short of half of the team goal of $1,000 I set! Your generosity is fantastic - keep spreading the word!

I attended my second breast cancer support group this afternoon, and I have to admit it was kind of a downer compared to the nutrition/fitness conversation we had last month.  Some of the ladies are having a really tough time and it makes me thankful that I have the love of so many people to help me get through everything. 

One thing that stuck with me (maybe it's because I'm new to being part of the breast cancer club) was that one of the group members said she has a hard time every October during Breast Cancer Awareness Month.  Everyone is so focused on it and somehow everything turns pink, and she has a hard time with the constant reminder of her experience.  I guess I never looked at it that way, but I get her point of view.  I feel like it's a month for people to be more active for the cause, donate a little and maybe reach out and help someone who may be battling the disease. 

As I left the meeting, I noticed I had a message from Ashley (my gene counselor) at the Breast Center.  (I was in the Breast Cancer suite when she called me - wish I would've bumped into her!)  She left a message saying she has "good news" and that I should call her when I can.  It was already after hours so I'll call her back tomorrow, but I'm trying to decide what her good news is.  Here's how I see it:

1. I have a mutated BRCA1 or BRCA2 gene that caused me to have breast cancer.  In this scenario, I can have my mom and/or dad get tested and from there, alert my other family members.  I can also, after having kids, choose to have a hysterectomy and/or oopherectomy, which would eliminate my risk of ovarian cancer.  Get rid of it!
2. I don't have the mutation, and we have no idea why I got breast cancer.

Not sure which of the two scenarios I'd prefer!  I guess there are positives and negatives of both, but I wouldn't necessarily call either good!  Cancer is cancer.

New Boobs Day Countdown: 36 days!

Making Strides

Taking a break from all of the pain talk (boooo pain; it's still here), I've decided to sign up for the American Cancer Society's Making Strides Against Breast Cancer walk on October 12!  It'll be just a nice little morning walk compared to the 3-day (60 miles!) I did a few years ago, but this one is hitting much closer to home.  My fundraising goals are definitely doable, so I'm sharing the link here in case you haven't been on Facebook today/checked your email (I'm sorry in advance for soliciting).  Please take a moment to visit my fundraising page to contribute, or walk with me if you're in the Mpls area that weekend! Let's go Team Schober!

Ma ma ma ma ma ma ma ma madness

I promise I haven't forgotten to update, we've just been crazy busy and have a few more weeks of the madness before things slow down! 

Not much to report on the cancer side of things; I've been waking up sore every day so that's fun. The muscles in my chest and arms have been really tight and I've been trying to stretch as much as possible.  I think sleeping in my in-law's guest bed over the weekend, long jaunts in the car, short walk/runs, and playing kickball are all playing a part in the soreness.  I'm just overall not being very cautious with my body anymore and I think it's telling me to slow down.  Who has time to slow down though, when there's so much fun to be had? 

We got home Sunday night from a great weekend in WI!  We spent time with Jason's parents, cousins and aunt, went to Lauren's (one of the two cousins we saw) bridal shower, and to the Packer's (GO PACK!) v. Redskins game on Sunday with our good friends Andrew, Joelle, Robin and Emily.  It was a packed (see what I did right there?) weekend with little sleep, loads of fun and awesome memories made.

The girls and I dancing with the Tundra Line at Lambeau Field and some snapshots from the game.  We're super excited about our cool new Packer's sunglasses :)

Let the craziness continue (oh, and only 50 days until NBD)!

BRCA

So with much encouragement from my care team, I finally had blood drawn and sent off to see if I test positive for the BRCA1 or BRCA2 gene.  I wasn't hesitating because I'm afraid of the results; believe me, after being diagnosed with cancer I think I can handle gene test results.  I'd made a note to schedule it, pasted it to my computer, and then each time I saw it, looked past it.  It just started blending in with my surroundings ha!

If I remember correctly from the gene counseling session I had before my surgery, it was discussed that I have a 17%(?) chance of having a mutation (fun fact: we all have the gene, it's just a matter of it mutating or not that causes breast cancer).  That could be way off, but it'd be nice to know (and nice if one of my parents would get tested too) so I can tell any potential affected family members that they're at risk too.  I should find out the results in 3-4 weeks, so I'll keep you updated.

Go Mode

After having my final, yes final, expansion on Thursday last week, I met with Dr. Howe on Friday morning to discuss how the tamoxifen is going.  I'm having the very typical side effects: hot flashes and night sweats (hot) so nothing to be too concerned about.  He was so impressed with my blood work that he told me I could officially tell people that I'm cancer free.  Did you hear that!?  Cancer FREE!  Gone, zip!  Of course as I was finally finishing my last thank you notes yesterday, (writing it in every single one) I couldn't help but wonder if I'm totally jinxing myself by celebrating and blabbing to everyone about it.  On the other hand, I think I deserve the bragging rights - it's the best news I've had all summer!

Bringing me to my next topic: my energy level.  I don't know if it was the great news on Friday or the fact that I got some heavy duty relaxing in this weekend, but I've been like the energizer bunny lately!  I've been working out and kicking butt on annoying little house projects I've been putting off.  I've even been able to squeeze an episode of Orange is the New Black once a night (one more episode left... dreading the end of that hour, Season 2 needs to be available pronto!).

Loving and living life; only 58 days until New Boobs Day :) We finally broke the two-month barrier people!!

Long Winded

Jason's aunt Colleen is a genius and suggested that I write to Ellen, you know, that Ellen, to see if she'd be willing to help out with my pajama project (ohhh boy, let's call it the Pajama Project! I'm seeing logos flash in my head!).  Of course!  Ellen helps so many people, and this could be a way for her to really make an impact.  I wrote up a page and a half explaining my story and how much I love the pajamas and why everyone having a mastectomy should own their own pair.  Then I realized I had to stay within 1,500 characters.  Wom womp.  I whittled and deleted, bringing what was originally well over 4,000 characters down to the 1,500 requirement, on the nose.  Here's what I submitted:

On 6/14/13 at the ripe age of 28, I was diagnosed with breast cancer. I had a bilateral mastectomy soon after, and during my recovery was given a Victoria’s Secret Supersoft Short PJ Set. I was preaching about how much I love them day in and out when it occurred to me that I needed to do more. I had an idea to gift a pair of these pajamas to every woman going through a mastectomy. Sadly it’d be a lot of pajamas and I’m not Scrooge McDuck with a vault filled with gold coins, so being a part of the social media world we live in, I reached out. I wrote a review on the VS website (by Cassie61413 on 8/12/13 – check it out!) hoping to give a gentle “hint hint.” I also submitted a short essay to Fab-U-Wish through BrightPink.org, acknowledging the fact that we’d need some collaboration between multiple, huge organizations to make something so big happen.

So far I’ve heard nothing, and that’s where you come in (third time’s a charm, right?). I’ve seen you and your sponsors give out some pretty hefty checks to very deserving people. As someone who has been through it herself, I believe that anyone having a mastectomy, single or double, is more than deserving of a little comfort. Is it at all possible that you would be willing to be the bridge between the Victoria’s Secret pajamas and patients as they leave the hospital? I know this is such a major request and it will involve many moving parts, but how worth it if even one person feels the comfort I felt? Thanks for your consideration!

I really do hope that the third time is a charm and she's interested in this project!  

Support Group

Yesterday afternoon I met with the breast cancer support group that Lynnae and Carrie (my two angels from the pre-surgery days) host once a month.  The topic was nutrition, and so fitting too because I've been doing some pretty hefty research on combating hot flashes.  I was, as expected, the youngest in the group of a dozen women, and we had a great conversation about soy, ground flax seed, and a plant-based diet.  I'm pumped to try a few things and see how they affect the side effects!

Tomorrow I have one more (I won't say last this time, I might change my mind again) expansion.  I know, I know, I thought I was going to be done too. I'm liking the size I'm at right now and Dr. Heinrich wants me to over-expand so she has room to work with.  My lovely sister Rachel is chauffeuring me to my appointment and I'm excited for her to meet the wonderful staff at the clinic I go to.

Total side note: I'm super sore from 1) dancing my booty off at the wedding over the weekend and 2) playing kickball last night.  Not as ready to jump into activity as I thought :(

More later this week - this gal is exhausted!

It's my Birthday!

Usually I wouldn't have ended "It's my birthday" with an exclamation point, but I'm a changed woman.  My outlook on aging has gone from "I'm going to celebrate 29 every year from now on" to "Bring it on age, I made it this far." I'm perfectly happy where I am, at the age I am, and instead of dreading a new number, I'm embracing another successful year under my belt.

I'm confident that 29 has good things in store.  The biggest thing on my radar: I'll celebrate five incredible years with Jason in a few short months.  Another thing I'm looking forward to: New Boobs Day!  I'll have milestones to celebrate with family and friends, mini celebrations at our favorite restaurant, Kafe 421, and a whole lot of being thankful happening. A few goals:

1. Mega-clean our basement of all the cobwebs, dust and miscellaneous boxes that landed there when we moved in 3 years ago so we can maybe start finishing it
2. Finish landscaping our back yard
3. Push my idea of pajamas for women having mastectomies further; I've heard absolutely no feedback from the organizations I've reached out to, and that's not ok 
4. Secure our wireless network (small but something I've been meaning to do for a long time)

As we celebrated turning 29 last night, I was talking with some girlfriends about over-committing and missing out on time with the people who mean the most to me.  It's difficult to say "no" to things, but I'm going to try really hard to start saying it more.  Life's too short to waste even an hour doing something you don't want to do.  I want to really savor the time I have with the people I love and not constantly be worried about what I'm falling behind on on my list of things to do (I'm famous for my to do list's, by the way). 

Looking forward to what this new year has in store for me.

Jason = Positive Vibes

While waiting tonight for our purchase to be gift-wrapped for one of the many weddings we have this summer, I picked up a name horiscope-like book and found such a promising message under "Jason":

You will marry young (we were 24 and 25) and will weather initial difficulties (hello 2013!?) due to your age and inexperience (no one, at any time in their lives, should be prepared for what this year has put us through). Time will bring confidence, security, and happiness.

How uplifting, right?  Of course I searched for my name, but no one recognizes "Cassie" as a name.  I don't count Cassandra as being close enough (that's not my name); I want straight up Cassie.  No cool name pencils or key chains for this gal growing up.  Oh well, I think Jason's scope is perfect for both of us.  Time has brought us so far from where we started in all of this, and I'm so confident that it will eventually not cross our minds every single day.  Just a matter of time.

Another matter: kickball.  Our team did awesome last night, starting our season off with a 11-2 victory!  The ref was nice, cracking jokes while I was trying to play catcher, and we were all miserable in the oven that has taken over MN this week.  We made the best of it though and I'm so proud of our team.  I played without pain (although I'm pretty sore today) and I know the more I do it (i.e. every Tuesday for the next 7-8 weeks) the better I'll feel.  As a matter of fact, kickball will pretty much bring me right up to New Boobs Day (70 days)!

Living

"I like living. I have sometimes been wildly despairing, acutely miserable, racked with sorrow, but through it all I still know quite certainly that just to be alive is a grand thing."

- Agatha Christie

Dance Dance Dance

Have I mentioned how hot it's been this summer?  Yes?  Sorry - it's seriously scorching and making me completely regret taking central air off of my "absolutely must have" list when we were searching for and buying our house.  Next time AC, next time.

We celebrated my oldest friend Maeghen yesterday as she married a very cool and sweet guy, Reid at their gorgeous backyard wedding.  She was stunning, the guests were some of my favorite people, and we danced the night away.  That's right - I danced.  For a very long time.  I jumped, twisted and shook my booty and the fact that I had major surgery 8.5 weeks ago didn't cross my mind once.  I had the best time and felt 100% like myself again!  SUCH a great feeling!

Jason and I; the Maeghen and I; and the newly-weds Maeghen & Reid

I wasn't in any pain last night, just a little sore this morning.  Best part about the wedding (in a me-centered, selfish manner): I proved to myself that my fears of exercising are nothing to worry about.  If I can jump up and down for hours at a time, I think that I'm totally capable of getting back into an active life.  What perfect timing too; we have our first kickball game on Tuesday!  Can't wait!

Hot Hot Hot!

Going to make this short and sweet since I'm in a bit of pain and my head is spinning!  I had my sixth and final expansion this morning!  Woo hoooo!  So very exciting :) No more weekly appointments and days of nausea from the pain meds.  All I have to do is wait wait wait (patiently, of course) for New Boobs Day to roll around (76 days) and I'll be on my way to my new old self.

I was right about the hot flashes last week; they've officially begun.  It's been quite a hot and humid week so it's not helping, and I've been waking up 3-4 times a night overheating and uncomfortable.  I'm exhausted!  I'll try to roll over on my stomach (no way, ouch!) or side, (again, ouch) to air out my back but that hasn't been seeming to work all that well. I'm keeping on with the flax seed though; I know it'll kick in one of these days and it won't be so bad anymore.  I'm meeting with my oncologist in two weeks to check in on how the Tamoxifen is going, and I have a list of vitamins that are supposed to help the flashes that I'm going to run by him.  Until then, it's a hot child in the city!

TGIF

I've survived my first week back in the office.  Of course, it wasn't a full week there, just 3 days, but it's a start!  I also have some pretty exciting news: New Boobs Day is officially happening on Wednesday, November 6th (only 82 days!).  I can't wait to get these rock-hard, uneven, armpit-bags outta here and some pretty new softies put in.  I don't even care that I'll have to go through more pain; it'll just bring me one step closer to feeling normal again! I've been told that this surgery is much easier than the one I had in June; I won't have any overnights in the hospital and I'll be back to work in the office within days of the operation.  Awesome!  I'll have (I do already!) so much to be grateful for at Thanksgiving!

My expansion yesterday went really well - getting a needle through a bruise didn't hurt as badly as I imagined it would, and I'm slightly less sore this week than I remember being last week. The ride to WI last night went fine too.  Something's up today though; I feel nauseous and have a slight headache.  I took the same dosage of pain meds I've been taking during the last couple expansions, but I have a feeling they have something to do with how I'm feeling.  I'm considering not keeping up with them today - I'd rather deal with the pain on it's own than this sick feeling I have right now. 
 

View from the passenger seat: a hot air balloon just as we got into Wisconsin.

I also think that the hot flashes have started (of course, it's a beautiful 75 and sunny right now, so that might have something to do with it).  They're nothing terrible, but I'll get super hot and take off the tshirt or sweatshirt I'm wearing, then I'll get super cold and have to put everything back on.  It's happening maybe once an hour, and I don't think they're intense as I imagined they'd be.  If this is it, I'll totally be able to handle it for the next 5 years.  I've been adding ground flax seed (thank you Joelle!) to my food and my mother-in-law Barbie just suggested incorporating more soy into my diet to minimize the flashes.  I'm totally up for trying any natural remedies, especially if they're healthy in other aspects too!

My Essay

Taking Dana's advice from the other night, I submitted a short essay to Fab-U-Wish. I was only able to write 150 words (super limiting the way I tend to ramble on sometimes) but I gave it my best shot:

    "In the first few days at home after my bilateral mastectomy, there’s nothing I could do to get comfortable.  My brain was fuzzy from pain meds, I had yucky drain tubes coming out of me and fresh wounds on a very sensitive part of my body.  The only way I was remotely close to feeling comfortable was walking around topless (not great in front of visitors); that is, until I was gifted Victoria’s Secret Supersoft Short PJ Set.

    I don’t need anything, so my wish is that every woman having a mastectomy could have a pair of her own. It’s a BIG wish and it’ll take some thought, collaboration and generosity.  Ideally, we could somehow get VS to pair up with the Bright Pink, the American Cancer Society and/or Susan G. Komen to gift these to women before they leave the hospital. Comfort for all! #JustThinkAboutIt #Philanthropy #Survivors"

Hopefully it's a start!

Talk About the Little Things...

It's funny that I wrote about appreciating the little things in life just last night because this morning, I found a coconut yogurt in my fridge and was absolutely thrilled (that's what happens when you mindlessly grocery shop - you forget what you buy)!  So yummy; made my day!

Today is expansion #4 (that's right, totally skipped talking about #3 last week when I wasn't writing) and although I feel like a seasoned pro at this point, I can't decide what I'm dreading the most:

1. Knowing the PAs will stick a needle through the bruise that formed after last week's expansion, or
2. Riding in the car for 4ish hours later tonight while on pain meds.

Neither sounds awesome to me. Wish me luck!

Weekly Inspiration

Jason's very sweet aunt Colleen has been sending me inspirational quotes each week and I just wanted to share one (so cliché, I know!):

“Enjoy the little things for one day you may look back and realize that they were the big things!”

Focus

My goal with this blog from the beginning was to share my story, hoping that it would help other women in their late 20's cope with situations, feelings and decisions we're not supposed to be coping with at this age.  I feel like I've lost focus a little and I've not been keeping up with my writing as much as I had hoped to.

To start fresh after almost an entire week of not posting, I have an idea I want to put out there. An idea that I know could potentially help hundreds, maybe even thousands of young women going through what I've gone through over the last couple months.  It's an idea that definitely needs more thought, and maybe even help from others (for sure from a few huge organizations).  Please feel free to leave comments, suggestions, tips, contact information, etc if you think you can help.

Cutting to the chase (you're probably thinking, good LORD this girl is dragging on); I received a pair of these Victoria's Secret pajamas as a gift from my lovely friends Julie & Josh and basically lived in them the first couple of weeks after my surgery.  I loved them so much, I bought a pair for a family friend who had her own bilateral mastectomy a few weeks after mine.  I raved about them to my sister and because of my recommendation, she bought a pair for a client of hers who also had a mastectomy (way too many women dealing with breast cancer for one paragraph, by the way).  The pajamas are amazing, and I'm not just saying that as someone recovering from surgery; I'm sure any lady would be comfortable in them!

I've already written a raving review about these on the Victoria's Secret website (I don't see it, or any other product reviews on their website.  I hope it wasn't just for their R&D team...), but I think it'd be awesome if we could somehow get Victoria's Secret to pair up with the American Cancer Society, or Susan G. Komen to get a pair of these into the hands of every woman having a mastectomy. I plan to mention the pajamas on social media, making sure to tag the above organizations, but I need to do more. What else can I do to make this idea a reality?

Oooofta

Talk about jumping back into work.  Before I went out for my surgery 6 weeks ago, my goal was to attend and work the event in Duluth.  I did it, but holy cow did it wear me out!  The early morning hours and longer-than-normal days totally took a toll on me and I was a major grouch last night (sorry Jas)!

It was awesome being back in Duluth again, even if I was working most of the time.  We went to all of the places that have become my favorite after years of visiting Rachel while she lived there.  Sunday was my favorite: we started the "vacation" by hiking at Gooseberry Falls, then had dinner at Hanabi and took a cruise of the harbor on the Vista Star.  Monday I was so exhausted after work that we had dinner at the Anchor Bar in Superior (best burger in MN, in my opinion), and passed out at the hotel by 10pm.  After a long and successful day yesterday, we stopped by Grandma's for an unwind beer before hitting up Rocky Mountain Chocolate Factory and starting the trip home.

Some snapshots from our trip

It was so nice to get away for a little bit!  Now that I'm back I need to be in full-speed-ahead mode but I think my refreshed brain is ready for it :)

No new news on the cancer-front, other than the fact that I found an email in my work inbox today that I sent the morning of my diagnosis.  I get nervous all over again thinking about that day :(  Good news: no sign of side effects from the tamoxifen yet (knock on wood); watch, now that I've said that I'll get hot flashes all day haha!

Third Time's a Charm

I had a successful expansion yesterday in which I had 35cc's injected into each side. It's like Goldilocks - 50 was way too much, 25 not enough, but 35 was just right :) I was a little sore last night and today but tolerable, and I think tomorrow I'm going to see how it goes without any pain meds. 

I'm very excited for tomorrow: Jason and I are going to have a little adventure in Duluth! I'm scheduled to be there for a work event but that's only for a bit tomorrow night and then during the day Mon/Tues. Jason's never been so I'm pretty pumped to show him all the places I've learned to love while visiting my friend Rachel while she was in Duluth for pharmacy school. It'll be like a mini vacation, which I think we're both in desperate need of. The weather should be nice and I can't wait to see the gorgeous city. It's been too long Duluth!

1-2-3 GO!

Today I'm starting tamoxifen.  It's a big day (in my opinion anyway) because it's the starting line to my 5-year marathon to a cancer-free me.  It also starts a 5-year ban on getting pregnant (cancer, you're a jerk).

Of course, here I am, impatiently waiting for Jason to take me to Target so I can get the pills and start them already (it'll just be one/day).  I figure, the sooner I start it, the sooner I can finish.  If you're not familiar with the drug, here's a rundown courtesy of WebMD:

Tamoxifen is used to treat breast cancer that has spread to other parts of the body (metastatic breast cancer) (taking it is precautionary for me; my doctors have assured me that my cancer hasn't spread), to treat breast cancer in certain patients after surgery and radiation therapy, and to reduce the chances of breast cancer in high-risk patients.

This medication can block the growth of breast cancer. It works by interfering with the effects of estrogen in the breast tissue.

Side effects can include:

• hot flashes;
• leg cramps;
• muscle aches;
• hair thinning;
• headache; and
• numb/tingling skin

How lovely!  I'll be a 55-year-old woman stuck in a 28(almost 29, eek!)-year-old's body.  The possible side effects are much better than having cancer; need to remind myself of that, probably once they start kicking in more so than right now though, haha!

One Step Forward...

You know what comes next.  Such a roller-coaster of emotions, this year has been.  On top of everything that's happened—deaths in the family (one very sudden), my cancer diagnosis/surgery/recovery, and plans for starting a family completely disrupted—Jason found out yesterday that the company he was working for is going out of business, as of yesterday, leaving him on the hunt for a new job.

Things could be worse; I have amazing insurance.  My medical bills through this whole process have racked up to almost six digits, and we've only seen $25-$45 co-pay's here and there.  I'm not done yet either - I have another surgery and 5 years of medication coming up. The bills could very likely surpass what we took out as a mortgage on our house.

Yes, the unemployment Jason will collect will be less than his salary, but his confidence, skills and talent will land him a great job, and soon too.  From the moment he heard the news, he's been sending his resume out.  He's not wasting any time and I'm so thankful he's so on the ball. If he doesn't stress about money, I won't stress about money. 

Our worst day is still a better day than many other people in this world are having.  It took me awhile yesterday afternoon (between wiping tears and sobbing to my sister on the phone - hey, it's a lot to handle in a short period of time) to remind myself to be grateful for everything we have. Pitty party - table for one.

Timing, ohhh you sweet son of a b****.  You're awful right now. 

Weekend Wrap-Up

Did I mention that I started work again last week?  I was (and will continue for a bit longer) working from home.  It felt great to have my brain back in use after my three weeks "off" but I found myself getting frustrated because of the workload.  It's not a heavy one to say the least - work has been great about easing me back into my duties - but I do feel overwhelmed at times, which I think, is the most frustrating part.  Before all of this, I'd be able to take on what I've got on my plate and then some without blinking an eye; now, I'm distracted and feel really slow.  I'm getting the work done, don't get me wrong, but not at the speed or quality I typically like to produce.  Crossing my fingers that this next week goes a little better!

My "home office" at the dining room table and a
big perk of working from home: catching kitty cuddle sessions :)

 

 

My second tissue expansion on Thursday was a much better experience than the first!  I still had the tight, sore feeling from the first round, but the pain I felt in my ribs was completely absent!  I sneezed once late Thursday night and felt a quick stab, but other than that, my meds did their job and it was tolerable.  Thinking about getting a little crazy this week and bumping it up from 25 to 30 cc's in each side.

We met with a reproductive endocrinologist Friday morning and since, I've been struggling to summarize our experience.  Although the man is a genius who in the past made national headlines for his work with surrogacy (in a good way), his social skills were a little off (i.e. talking to me, as in mentioning something about the age of my ovaries [28 like they're supposed to be, if you're wondering] but looking at Jason while saying it.  Odd. 

Anyway, the reason we met with him was to determine what our options are for starting a family.  Here they are, as clear-cut as I can make them:

1. We harvest, create and freeze embryos now, before I start taking the tamoxifen, and use them either when I'm off the medicine in 5.5 years (it's been suggested that we wait 3-6 months after taking it so the drug is out of my system) or implant the embryos in a surrogate at some point before then.  As you can imagine, this process is extremely expensive (like, needing to with the Powerball before doing it, expensive).
2. We look into adoption.  I wish I could write a paragraph about it, but I've honestly not started doing research on it yet so I can't!
3. We wait 5.5 years (until I'm 34.5) to try for our first child. 

I feel like an 18-year-old again, starting college and trying to foresee where I'll end up in 4-5 years. Most 18-year-olds shouldn't be able to make such major decisions about their future (I put myself in that category); they haven't "lived" enough to know what they want to do when they grow up, and this feels like a similar situation.  How are we supposed to know what's best for us in the next 5 years?  I hate hate hate that there's a time frame pushing us too; if we decide to freeze embryos, we'll need to start the process in the next couple weeks, and I feel like that kind of a decision (and finding a pot of gold) requires more time.

Needless to say, I've had some very emotional moments over the past couple days, and I think that's why I've been delaying a post.  I didn't know what to write.  The thought of waiting for so many years to have a baby is breaking my heart, especially since we were ready for that part of our lives right now.  I'm trying to have patience and generate positives about waiting but are you kidding me?  I'm the most impatient person on this Earth and waiting that long sounds like cruel and unusual punishment (for a crime that I've never committed).

Time to break out the good ole note pad and make a pros/cons list (after researching more about adoption, of course).

Reproductive Endocrinologist

Support, and Not in the Form of a Bra

I celebrated my four-week anniversary post-surgery by sharing my "close friends and family only" blog to Facebook in hopes that I could be a voice of encouragement to others who may be experiencing a similar situation.  The response has been overwhelmingly positive, encouraging, and loving, and I'm so very grateful to everyone taking the time out of their lives to read and share my story.  You are the people who add the fuel to my fire!  I've heard from a few ladies that it has motivated them to schedule an appointment they have been putting off, and hearing that makes me confident that I did the right thing by sharing my experience.  If even one person is able to catch something before it's a scary something, I'm doing my job!  It's never too early to get tested, and I'm not just talking about breast cancer either.  There's no room in life for hesitation when it comes to your health!

On a completely separate note, I just got home from having my second expansion.  Like I mentioned after last week's painful experience with 50cc's, I only did 25cc's on each side this time. I have to say, they're coming along quite nicely!  My preliminary assessment says that the right one is finally catching up to the left in terms of shape (it's been a little flatter) and my guess is that to any random, unknowing person, they wouldn't give me a second glance!  They're feeling a little tight but we'll have to wait a few hours until the pain (if it's coming) will really kick in.  That should be perfect since I have dinner plans with a few girlfriends at 7 (sarcasm font). I'll let you know how it turns out a little later!

More Tears

I know it's hard to imagine being so incredibly happy yesterday and then sad today, but it's true.  It happens.  Today Dr. Howe (my oncologist) called referring me to the U of M's Reproductive Medicine Center so I could set up a consultation with a fertility specialist before starting tamoxifen.  The woman I spoke with gave me a general rundown of services, all of which are extremely expensive, and most of which are not covered under my health insurance plan.

I know it's way too early to be giving up on having kids, especially since there is still so much that we don't know - we have many options.  It's just very cumbersome and scary and not at all the way I imagined making our little family of two into a family of three or four.

I'm still feeling VERY optimistic about everything else; it's crazy to think that it's been four weeks since my surgery on June 26 - absolutely nuts!  I'm feeling better and better every day and couldn't have asked for a better recovery period!

Reproductive Medicine Center

Reproductive Medicine Center

Reproductive Medicine Center

Tears

Of JOY!  Psych, I bet you thought after reading the title that something bad had happened.  Nope, not this time!  We just got home from my appointment with Dr. Howe and he gave us the very happy news that I won't need chemo or radiation!

He confirmed that I will have to be on tamoxifen for the next five years, meaning that the hormones in my body will be blocked by the meds, giving me menopause-like symptoms (and not very good for growing a baby). Dr. Howe is having a team member of his refer us to a couple fertility doctors, so we'll definitely be having a baby discussion before I start taking anything.

Hip hip HOORAY!

Nerves

You'd think by now I should be over being nervous for doctors appointments.  I'm not.  Jason and I are meeting with my oncologist over lunch tomorrow to discuss further treatment.  I'm hoping and crossing my fingers and toes that the oncotype test results are in so we can include that information as we decide on a plan of attack.

If the results say the cancer is likely to reoccur, I'm looking at some chemo and/or radiation.  If not, then yippee, neither!!  Either way, it's very likely I'll have to be on Tamoxifen.  I can get into the awesome (sarcasm font) side effects of that tomorrow once I know more, but yikes.  Welcome back nerves!

Third Time's a Charm?

I had the privilege of being drained for the third time today.  Gross right?  How is it possible that over three weeks of healing, I'm still producing enough liquid that it needs to be extracted from me?  Thankfully, it was MUCH less today than it has been the other two times, so I think 1) the room my expanders took up is leaving less room for the liquid and 2) the compression bandage is working.  I've certainly been drinking mine and Jason's share of water the past couple days so maybe that had something to do with it too? 

Tonight I spoke with a lovely woman from Boston who had, 5-6 years ago, been in a very similar situation as mine.  She was 28 at the time of her diagnosis, and although her surgery and (so far) treatments were different, she was able to offer me something no one else at this point has been able to offer: knowing exactly how I feel.  No, she and her then-boyfriend (now husband) weren't trying for a baby like we were at the time of diagnosis, but she understands the fears of recurrence and having cancer constantly on the brain.  It was SO nice talking with her; I'm sure by the end of our 40 minute conversation she was more than ready to hang up, but I'm looking to her as a resource of information so I can't get enough of it. 

I hope that I can be that voice someday, helping another young woman in our situation.

Talk About Pain...

So last night I mentioned being in pain from the first expansion.  It got much, much worse from the time I made the post.  I somehow got myself to a lying down position on our bed, bawling, and was attempting some of the stretches I learned in PT (hey, the drugs weren't working so I had to exhaust all avenues) while Jason was Googling to see if others had had a similar reaction to their first expansion.  They did. 

The stabbing pain I was feeling in my ribs was normal; we found out the a lot of surgeons will sew the breast muscle to the ribs, so of course, when the muscle expands (because of the tissue expanders underneath) it pulls the ribs, making them feel like they're slowly breaking.  How nice right?  I broke down and took more of my meds (I've been trying to take less than I need - who needs all of these drugs in their system?) which helped me sleep.

I woke up this morning and just laid in bed, dreading sitting up (by far the most painful thing I do every day) and finally I gave myself the 1-2-3 and I was up. I took meds immediately and over the past two hours, they've kicked in enough to allow me to take a shower (a very slow and careful one at that).  I'm planning on taking it easy today; maybe doing my stretches a few times but other than that, I don't think I can handle much more :(

Expansions

What a great weekend!  We were busy, but not as much as a typical weekend when the Schober's are in town.  They're such a great source of support and love; Todd was his usual sassy self and Barbie was a doting mother-in-law with an eagle eye for me the entire time.  Love them! 

Although I thought we played it pretty easy, I'm exhausted today.  I slept late and woke up hot and crabby, that is until we had breakfast in a nice air-conditioned restaurant nearby.  And get this: I drove today!  For the first time in 20 days I drove a car!  I didn't make it very far, just to a gas station a few blocks away, but it's a start!  It was still just a little too painful to pull the steering wheel and I'm hesitant and slow which isn't good when driving in the hussle-bustle of the city.  I think I'll give it another couple days before trying again.  It'd be amazing to have the freedom of driving again; it's awful having to rely on others for rides.  I feel like such an inconvenience sometimes!

This afternoon we met with Dr. Heinrich who (thankfully) drained out another couple large-syringes of fluid that had collected under my skin.  It's so gross; I'm so relieved that it's gone.  It's jiggly and uncomfortable and I hate having it!  Jason and I didn't think this would happen too, but she wanted to expand me today as well!  After we got rid of the nasty fluid, she asked me to lay back on the table.  She took out her magnet and found the ports into my tissue expanders, then marked the spot on each side with a blue X.

Her assistant (didn't catch her name), on my right, and Dr. Heinrich, on my left injected me at the same time.  First, 25 cc's.  Then, when I said I wasn't really feeling a change, they added another 25 cc's.  It was CRAZY watching my "breasts" get bigger right before my eyes.  It was like puberty in fast-forward.  Sitting up I felt an enormous amount of pressure in my chest, and since getting home, have felt sort of a stabbing pain right down the center of me that pulses each time I expand my chest to breathe. I'm on as much medication as I'm able to take and I'd say my pain level is at a 7.  It hurts bad.  Almost as bad as those first few days after surgery.  I think I need to hold off next time and only do 25 cc's :( 

Keeping up with the Schober's

I've been a busy girl!  I'll get through the yucky part first.  Because I was still producing so much fluid after the drains came out, I had to have the excess pocket (what looked like a nasty fat roll/side boob) drained, which at the time didn't hurt much, but about an hour after killed!  That was Thursday, and I've noticed that it's been filling up again, which means another possible drain at my appointment on Monday.  Dumb.

Yesterday I met with a physical therapist who showed me exercises I can do at home 2-4 times/day to regain the range in motion I've lost since the surgery.  I did it once first thing this morning (before taking any of my pain meds) and wow, it hurt.  Bad.  Showering after was not fun and took WAY longer than it needed to.  Once the drugs kicked in I felt much better and went shopping with my two sisters for some new dresses (the tube top swim suit cover-ups need to go) and after painful try-ons, came out with a few scores!

When I got home I did the PT exercises again and did much better; not so much pain, a little further in the stretches.  It feels so good to be doing SOME sort of exercise again; I know I'm burning maybe 15-20 calories while doing the stretches, but anything is better than nothing at this point.

I'm awaiting the arrival of Jason's parents - Todd and Barb - at the moment.  They're the best in-laws a gal could've hoped for (and I'm not just saying that for brownie points either).  I'm so excited to see them, but at the same time a little nervous.  When they're here, we like to show them the town and check out local events.  Usually our outings involve way too much eating and drinking (something I've not done while on all these pain meds) and are go go go non-stop.  I hope I can keep up with them!

Todd & Barbie <3

Pins and Needles

Now that my awful drains are out and I'm showering a ton, I've noticed that I've started getting more and more feeling back in the incisions.  I imagined that if I did get any feeling back, it'd be normal, skin and tissue feeling, or whatever I was feeling before surgery.  I was WAY wrong; I've been getting these super intense minute-long episodes where it feels like I'm being poked with a needle straight through the nipple (if I had one).  It's crazy and totally takes my breath away.  Of course I've checked it out and it's called phantom pain.  I'll have to figure out how to deal with it because man, I can't be going through that all the time!

We met with Dr. Sanan yesterday and I totally had a breakdown in the examination room.  C'mon, you can't ask a gal in my position "how have you been feeling" after the last three weeks I've had.  I blame PMS.

Long Road Ahead

That was by far, the most amazing shower of my entire existence.  When I finally felt the water make it's way through my 3-day-old, hairspray and dry-shampoo crusted mane (my friends and family can confirm, I have a mane) I started bawling.  At first because the cool water just felt so good on this hot summer night we're having.

And then I started crying because the last time I was in that very shower, it was the morning of my surgery and it brought back all the nerves, fears and emotions of that morning.  It reminded me that I've had a very hard three and a half weeks; weeks I wish upon no one.  I've been poked and prodded, biopsied, cut, stitched and taped.  I've woken up to pain so deep, a simple movement of my arm can take my breath away.

I've been shown so much love, support and friendship that I could fill a ship with it and send it off to places that need those very things, and I'd STILL have some left over for me.

I've proved to myself how strong I can be, and then ten minutes later how weak I can be.  I have a long way to go until I'm 100% recovered, but this shower is one in the first stumbly steps I'll take to get there.

Sweet Relief

Today I FINALLY had my drain tubes removed!  For those of you not paying attention, I've had these in since my surgery date, 12 whole days ago, to collect excess blood and puss my body produced while I was healing. 

Going into the appointment I had low expectations - I was supposed to be at 30cc's on each breast in a 24 hour period, and this last one was more like 45.  The color was right where it needed to be (sorry if that's gross) and the PA checked with Dr. Heinrich, came in and gave us the fantastic news that we got the green light to remove them.  I wanted to jump (too painful) and scream (too juvinile) so I flashed Jason a big smile and politely said "yay"!  Inside I was crying and hyperventilating like the young silly girls do when they see Justin Bieber.  This was my Bieber moment.

The PA removed the tape that'd been on my sides for the better part of two weeks and had me take a deep breath in and exhale for five counts.  During the exhale she pulled the tube, and I felt it uncoil inside of me - it was such a crazy cool feeling.  Removing the tape hurt worse than having the tubes pulled out, so when she moved on to do the left side I was feeling awesome.  I was able to hold in my excited screaming until we got to the car, which I'm sure Jason appreciated (sarcasm font). 

I have dinner plans with girlfriends but you better believe the second I get home that shower is mine, and I'm probably going to stay in there for a half hour at the very least.  Ohh sweet water, sweet shampoo and conditioner, how I've missed you!!

Over it

SO over these stupid drains.  It has been 12 days since I've taken a proper shower and these tubes coming out of the sides of me are driving me nuts!  Now that I'm feeling a little better, I've been going out in public a little more and wearing a fannie pack with pockets of puss and blood inside isn't exactly stylish for a gal my age.  I've tried pinning the bags to the insides of my clothes/dresses but there's no hiding these ridiculous things. 

Tonight I needed 15cc's or less on each side, followed by a repeat performance tomorrow morning.  Just now I was at 37 and 32.  Not cutting it.  Jason's trying to be positive, saying things like, "maybe by Wednesday" but oh. my. gosh.  I thought getting through the weekend was going to be tough.  I don't think I can do this for much more.  I'm considering canceling my appointment all together tomorrow; they'll tell me to come back in a few days.  Waste of time if you ask me.

Guhh!

Drains Drains Go Away

I'm reclaiming my independence, sort of anyway.  Yesterday I was able to successfully shave my armpits AND put my hair in a ponytail.  Tasks such as these are pretty simple to the every day lady, but a week after having surgery, with limited range in arm motion, I was pretty pumped I actually did it.  How exciting!

I didn't get into the details yesterday because my post was getting a little long, but I'd gotten the pathology report back the other day from Dr. Sanan.  He said that he had detected a few cancer cells in the sentinel lymph node he removed, meaning that had we not done the surgery, those cells could've spread to the next level of nodes and further on to the rest of my body.  Again, another close call in this crazy ride.  And, validation that I 100% made the right decision getting the bilateral mastectomy instead of the lumpectomy.  

I'm getting pretty sick of these drains.  Not so much the draining part - every time we empty them out it's kind of a guessing game to see how much will be in the cup.  Until this morning, I've been producing too much and the doctors don't want all of that excess liquid in my body.  The part that's bothersome is where the tubes come out of my sides.  They feel bruised and sore and just overall uncomfortable.  And because it's Friday, I'll be waiting until my appointment Monday afternoon, even if my drain totals stay where they are, to get them out.  Bummer.  I can do a few more days, I can do a few more days...

Non-Independence

It's been a week - I would've written sooner, but between nurses checking on me every 2 hours at the hospital, my mom and Jason fussing over me while at home those first few days, and the endless visits and phone calls from my family/friends since then, I feel like I haven't had time!  That sounds absolutely crazy since I'm not working and other than a doctor appointment and a trip to the market (I had to bust out some tears to convince Jason I was ready for an outing), I haven't gone anywhere.

I blame the naps.  Everything makes me tired.  While in the hospital the nurses were adamant about taking walks around the halls, so now that I'm home, I've been continuing those walks and I come home pooped!  The only movie I've watched in its entirety is the Little Mermaid, an 85-minute movie, and I think it was the adorable laughter of my niece Cecilia and nephew Josh that kept me awake for it.  Oh well, napping seems to be pretty nice; I can do it whenever I want and I usually feel pretty good after.  

My first walk post-op! Don't you just love the leg compressors AND grippy socks?

 Let's go back to last week so you can get the gory details of my surgery.  The day before, Tuesday, I was a ball of nerves.  Twitching and mind racing and just not doing very well.  Wednesday morning I did VERY well.  We got to the Breast Cancer suite right on time.  They had me change from the waist up into one of their luxurious gowns and head into the same room I had my biopsy in.  Jason and our bags were with me at this point and there was some delay in the injection they were going to use on me so we waited.  And waited waited waited.  Calmly might I add.  Finally they came in and injected me with a radio-active solution that Dr. Sanan would use to help find any stray cancer cells while he was operating on me. Included in the solution was something called lidocaine, which made my breasts numb.  A quick shot in each side and we were good to go.

Next we took a walk down to where the pre-op rooms were. After a bit more waiting, a nurse stood in front of me and asked if I was ready.  Lady I was BORN ready! She brought me into my own pre-op room and asked me to change into a purple gown, this time all other clothes gone. I was folding my pants and putting them into a plastic bag when Dr. Heinrich came in.  She made all of the markings the Dr. Sanan would follow during surgery and made me feel excited about the new boobs I'll have someday.

The nurse comes back in and as she asks me the health questions I've been asked all week (they type my answers into their database as they ask them, why is it that that no one seems to ever see them?) as a second nurse attempted to get an IV going on the top of my right hand.  She has a hard time with it, says my vein disappeared (huh?) and goes for one on my mid-forearm.  The nurses both leave and my family are finally able to come in now.  It's Jason, my mom, sisters and brother and I all smashed into this tiny little room but we make it work.  We crack jokes and once the anesthesiologist comes in we're almost having a good time.  She gives me something that makes me feel all goofy and I say goodbyes to my family.

Next I'm wheeled through hallways and into the operating room.  They transfer me to the operating bed and next thing I know, I'm out.  There was no counting down from a hundred, no "think happy thoughts" order, just sleep.  My guess is that, unknowingly to me, they injected my IV with something.  Fine by me!  I got to skip the anticipation and anxiety of the what if questions.  I wake up 6-7 hours later in the recovery room.  When I say wake up, I mean dozing, but I could hear myself snoring so that woke me up every time I started to doze. Dr. Sanan came in to check on me and said that everything went great and I finally got the go ahead to see my family!

I'm unhooked from a bunch of tubes and monitors and wheeled through the hallway, at the end of which I make out my mom, dad, sister and brother.  I gave them a little parade beauty-queen wave and then I'm in my room with a few nurses.  They transferred me over to my bed and got me all comfortable and finally let my family in.  At this point I'm super dozy and have zero recollection to what we discussed.  All I wanted was to sleep so when my eyes started drooping, they all (except Jason) went home.

Throughout that first night I'm woken up every two hours to take meds, have my blood pressure measured, my temperature taken and my oxygen levels looked at.  The machine that monitored my oxygen would go nuts every time I would finally drift off (deeper breathing = less oxygen) so they swapped me with something else.  I have these awesome (I wish I had a sarcasm font to use here) drain tubes that are removing the excess blood/puss from my wounds so we were emptying those every couple hours too.

These aren't MY drain bags, but they're exactly like the ones I had. 
I used black and white because to be honest, the liquid inside is pretty nasty!

The next few days/nights I had a few visitors and my mom/Jason took turns staying the night with me.  Its all a blur because I was sleeping so much of the time.  When I finally got the "go" to go home on Saturday the 29th I was the happiest girl ever!  My bed at home is definitely not as easy to maneuver in and out of as the bed in the hospital, but I can walk around topless here without anyone giving me dirty looks.  I'm not allowed to shower so I've been going through packs of baby wipes and we still have those drains to take care of.

The results are exactly what I was expecting - I have a 3-4" incision on each breast that's all stitched together and no nipples on either side.  The tissue expanders and drainage tubes give the appearance of a really botched boob job.  They're rock hard and the tubes look like veins sticking out (I'll spare you all a picture of that).  I wasn't looking for perfection at this stage and am happy I don't have to wear an uncomfortable bra or tons of gauze to cover the incisions (The zip up camisole I brought to the hospital?  Totally uncomfortable and haven't worn it once).  I think once I get the drain tubes out they'll look a little more normal (or at least normal for a girl who just had a bilateral mastectomy) and as I expand the balloons, they'll get better and better.  No more of this "A" cup I'm at right now :) 

I've been able to relax a little, and wanted to include pictures of some of my favorite things (among many many others) that were gifted to me and have kept me calm and comfortable during my time at home.  I recommend all of the products below, whether you're dealing with an illness or not - they're all fantastic!

From top left: Aveda's Blue Oil, a tuberose magnolia candle, eucalyptus spearmint pillow mist
from Bath & Body Works, and the softest button up jammies from Victoria's Secret

My time at home has been interesting so far.  Like I said earlier, I've had a few visitors and if anyone knows me, I like to have a tidy house before anyone comes over.  It's not difficult to keep a tidy house, just basically picking up after yourself, but when Jason doesn't allow me to do anything (beside the pain, the most difficult part of recovery), the house is less tidy than I like.  At least it has been decorated with a dozen vases of gorgeous flowers from my lovely brood of family and friends wishing me a speedy recovery!

I wish I would've taken more photos of the flowers :(  These are from my dad the Schober's

I put on a pair of jeans yesterday that indicated that I am, in fact, getting fat from wearing all of these stretch pants and comfortable clothes and eating all of the delicious treats my friends are bringing over.  I had a breakdown at that realization.  With no ability to work out (other than my short walks), I'll need to limit my food intake to strictly healthy foods, which is not my forte.  I work out for the sole purpose of eating treats.


The hair front has been quite interesting as well.  I have a lot of it and Jason's not exactly what I'd call an expert at taming it.  My sister washed it for me last night and we let it air-dry, so I'm going to bend the rules today and try to get it into a decent-looking ponytail this afternoon. Wish me luck!

I think today we're going to head out at my brother-in-law's parents house for a little bit.  They have a pool in their backyard that I won't be able to swim in, but at the very least I can put my legs in and pretend I'm swimming.  Later I'm bound and determined to see the fireworks so I'm hoping we can find a spot that's easy to get to and won't jostle me around too much.  I'm also hoping that I stay awake long enough for them!  Happy 4th all!

Surgery Day

It's finally here.  I can't say that I'm excited, but I'm very happy we're getting the show on the road and I don't have to spend any more days with it consuming my thoughts.  The next time I wake up, I'll be cancer free :)

I wasn't impressed with myself yesterday.  I was at work wrapping up everything for the next couple weeks and surgery is all I could think about.  I got to the point where I couldn't stop moving, I was almost twitchy.  I broke down on the phone with my dad for a little bit before heading to Erin & Rob's for a family dinner.  The mood there was quiet; I think everyone was feeling the nerves I have.

On the way home Jason and I were completely silent in the car.  There's nothing that can be said at this point to make either of us feel better.  I'm afraid of the pain I'll have in the next couple days and he's afraid something will go wrong with surgery (that's one thing I'm NOT afraid of - my surgeons are awesome).  When we got home, we both just started doing stuff - me inside and Jason outside - to pass the time.  Until this experience I've never been a stress cleaner, but it's been a fabulous distraction.

After crossing off all of the things on my to-do list (extra long for this extra stressful week and a half), I got to packing.  Here's an inside peek at the wardrobe I'll be rocking in the next couple days:

• My awesome post-surgery zip up camisole, complete with pouches for the drain bags
• Grannie panties
• Tube top swimsuit coverups
• Leggings
• Moccassins
• Wrap sweaters and zip-up hoodies
• Cloth headbands

I also threw in a few extra items for my sanity:

• Baby wipes
• Cleansing facial wipes
• Makeup (I'm so vain)
• A brush
• Burt's Bees Rejuvenating Lip Balm
• Throat lozenges (I read that they're helpful)
• A Kindle

My little overnight bag is filled to the brim but I don't care :)

This morning I'm nervous but calm (does that make sense?).  My stomach is churning but I don't feel like I have a panic attack coming on.  It's all out of my hands now, and I need to stay confident that things will be just fine.  Yes the next couple weeks will be hard, but the cancer-free result will make it so worth while.

There's no way I could've gotten through the last week and a half without my family and friends so here's a thank you: the support, love and encouragement you've given me played a tremendous part in my positive attitude.  The dinner, treats, movies, magazines, pedicure, gift basket and clothing are all completely unnecessary, but I appreciate every last bit and will utilize it all in my recovery.

My Jason: This has been an experience I never wanted us to go through.  When I look back at two weeks ago, I see two dumb kids with nothing but a backyard full of weeds to worry about.  Ignorance really was bliss.  There's no other person I would want by my side right now.  You've kept my feet on the ground (we all know how my imagination and hypothetical thinking can get the best of me) and you've been such a solid person to lean on when I need to break down.  Your love is so evident and your calmness is so soothing.  I love you so very much and can never thank you enough for your drop-everything attitude, pre-bedtime "wake me up if you can't sleep" offers to talk, and care I know you'll give me in these next few weeks.

I'm going to be just fine.

This might be it for a few days.  Keep the positive, healing vibes coming my way and I'll be sure to give you an update on how awesome it is having draining tubes coming out of me.