The Results are In!

It dawned on me today, after being questioned by numerous people at work, that unless you happened to see the post on Facebook over the weekend, you probably didn't know the results of my latest scans and appointments. Whoops! I forgot to post the news here! 

It's been kind of a whirlwind weekend (more on that later), but I wanted to get the word out to all of you that were wondering.

It was a "good news" kind of appointment. Kind of weird actually, because I don't normally have those, but I'm really looking forward to many more of them!

1. Blood work and scans all look good! Well, for the most part. I still need an MRI to confirm these results because several areas not seen by mammogram. (The MRI is not for several weeks though, so stay tuned).

2. Prescription for new meds in hand. These meds still might make me crazy, but at least I'll have a baseline and can compare which med made me the least crazy.

3. Dr. has heard the story of my HORRIBLE experience at the Seattle office through the grapevine and has decided to complain on my behalf in hopes of instituting change for others.

4. Dr. also feels that billing department hasn't been nice to us, and has decided to champion that cause on my behalf also.

5. Reasons why I LOVE my doctors confirmed!

6. We ended the afternoon at a friend's house where we brought lunch in exchange for seeing her twin babies. It was a good day all around!

Doctor did bring up some interesting points, which I am pondering, and may write more about in an upcoming post.

Was the Tamoxifen really making me crazy, or was it that taking it every day was a constant reminder of having cancer? Well, I grant her there might be some credibility to that argument, but I vote CRAZY. Ask anyone, especially anyone forced to live or work with me. CRAZY! And whatever the reason, since I stopped taking it, I'm starting to feel slightly more sane. Will fill the prescription this for the new drug she prescribed and start taking it soon to see if there's a difference. 

She's also concerned that my dire need to not live in my house anymore isn't going to make me better. She called it "bringing your muddy shoes to a new house." Dealing with my issues will make me feel better than moving to a new house. Or at least, that's what she thinks. And to this, I respectfully disagree...until proven otherwise. New house, new car, new life...all of it is about celebrating being alive. Embracing the things that are actually important. Simplifying. Enjoying. Finding a new place in the world where I'm not reminded of being sick. Life's too short...time to start living the dream.

So, that's my news for now. Thank you for all your prayers, support, messages of love...

Scan-ticipation is Making Me Wait...

It's that time...the first (of many over the course of the next five years) series of scans/bloodwork/doctor's appointments is coming up.

It has been four months since my last set of scans and appointments, so now it's time for another round. This batch, however, will be the first after an extended period of time without treatment. 

I wish I could say that I was clever enough to have come up with "scan-ticipation," but I stole it from one of my cancer peeps. We also use the term "scanxiety." It's a scary thing to always be wondering what the next scan might reveal. And to have to continue to subject yourself to them for YEARS before you can actually get a clean bill of health.

So, while you think positive thoughts and hope for the best, in the back of your mind (or maybe closer to the front) you are always thinking, "what if....???"

In this day and age, I don't really understand why there can't be a test or scan or something I can do that would give the "all clear/thumbs up/no worries." Seriously, so maybe curing cancer is outside the realm of possibility (though I don't understand what's taking so long for that either), but there's got to be some sort of cool machine that I can walk through every morning that tells me, "yes! You're healthy! No more cancer!" You know, kind of like the machine at the airport. You mean to tell me we can't utilize the concept for a better purpose?!

Anyway, these are just rants designed to distract me from how anxious I'm feeling.

If you're reading this post, send out good vibes, positive thoughts, and all kinds of prayers tomorrow. I won't know anything unfortunately until next week when I meet with the doctor, so don't expect immediate news. Bummer.

Fingers crossed...

Friday Five

It has been a crazy week here in Seattle with almost everything being Super Bowl-related. It's quite awesome for this sorta Seattle native (I've lived here since I was 10, so that has to count, right?) and self-confessed sports junkie. Very exciting! Go Hawks!

Here's the 5 this week:

1. MONDAY SUCKED! TREMENDOUSLY! WORST EXPERIENCE EVER AT A DOCTOR'S OFFICE! And I thought I had been screwed over all the ways possible by the medical profession. I was wrong. Because I posted a cryptic message on Facebook right after it happened which led everyone to thinking that I had received bad news, I will attempt to briefly make a long story short, here goes:
I have, all along, been going to the Seattle Cancer Care Alliance facility at Evergreen Hospital. I LOVE everyone there. However, being in desperate need of psychiatric help for my PTSD, I had to schedule an appointment at the SCCA facility on Lake Union as they do not offer those services at Evergreen Hospital. It was my first (and last) time in this office. So many things about the whole experience made me twitch. But the reason I got so irate is really long and convoluted.
Had appointment with a doctor there at 1pm.
Checked in at 1pm. They page the doctor.
Sat down in ENORMOUS waiting room, surrounded by signs that say, "If you haven't been called in 15 minutes after checking in, please check in again."
1:15pm goes by, but I don't want to be that person.
1:30pm: I check in again. And point out that I have to leave at 2:00 in order to pick up my kids from school. They page the doctor again.
1:45pm goes by...now I'm mad.
2:00pm: I go check in again (for the 3rd time). This time however, all I want is a manager to talk to and to make sure that I NEVER get charged for this visit. And to point out that I just took 3 hours off without pay and have nothing to show for it. They go find a manager and page the doctor again.
2:02pm: a very young, and clearly not well-versed in how to deal with patients, gal comes flitting to the desk and says, with a slight giggle, "Oh, Dr. Chen? He's not here today."
And then I go crazy!  
So, the doctor was not even at work today? And people knew this? And no one called me? Canceled my appointment? Told me one of the 3 times I checked in? How long would I have sat there? Does the guy have a 2:00 appointment waiting in the waiting room also?
So, the gal they finally send out to talk to me is GREAT. And bursts out into tears with how sad she is for what has happened. And is a cancer survivor herself. Which is a good thing she was the one sent to deal with us because she actually understood my frustration.
By the time I get home, I have 3 messages from different people apologizing for the day. One offers to send me a form so I can apply for reimbursement of my time and expenses (never seen that before). We'll see.

Long story, sorry. Cupcakes made everything better. Keith smartly drove directly from this fiasco to the cupcake store. I had 2 for dinner and took a 4 hour nap and the world was bearable again. 
Seriously folks, probably not best to make the already unstable patient that much more crazy. Just sayin'...

2. I was watching the Grammy's and realized that Cyndi Lauper and I now have the same hair color (or at least VERY close). Wow! Growing up in the Cyndi Lauper era, I have to admit that's a sentence I never thought I'd write.

3. The hospital that was suing us for our minimal outstanding bill ($800...which in the grand scheme of things is minuscule compared to all the $$ that we owe), which they stopped billing us for so how were we supposed to know we hadn't paid it off (but that's a whole other discussion), just garnished my paycheck for $1,300. Awesome. Don't even get me started. Makes me want to become a patient advocate so that others will not get screwed the way we have.

4. It's been a long, hard year for everyone here in the Yusko clan. I try really hard not to diminish all that the rest of the family went through even though my year has been pretty "me" focused. Teenage boy did not have the best year by any stretch of the imagination, and there have been many days that I considered selling him to the highest bidder. But then I realize that he is so much like me...and I appreciate the fact that he can ALWAYS make me laugh. Whatever the situation. I am so glad that no one has lost their sense of humor in this family, especially him. So many times this week I have laughed because of him. Thank you.

5. I could never begin to repay the kindnesses shown to me and my family this past year and a half. NEVER. Can't even imagine trying. So, when a friend posted this "Pay it Forward" Challenge on her Facebook page last week, I jumped at the chance to participate. So, instead of paying it back, I'm going to pay it forward this year! (And since the concept comes, I think, from one of my favorite books, I really love this movement).


Pay-it-Forward initiative: The first five (I'm actually going to do 10) people who comment on this post/Facebook post/email me with "I'm in", will receive a surprise from me at some point in this calendar year - anything from a book, a ticket, a visit, something homegrown or made, a postcard, absolutely any surprise! There will be no warning and it will happen when the mood comes over me and I find something that I believe would suit you and make you happy. These five (10) people must make the same offer in their Facebook status and distribute their own joy. Simply copy this text onto your profile (and again, you only have to do five, but I wanted to do 10). 

I'm really looking forward to doing this! Cannot wait to see who's in it with me.

And a bonus:
6. I hit the "Register Now" button for the Iron Girl Triathlon in August. Yikes! Who's with me??? Who's going to teach me how to swim? Yeah, that's kind of going to be a problem, but one I'm willing to overcome. So real now...no turning back!

Here's a video to get me inspired:

And the Results Are In!

Monday was scan and blood work day, and Thursday was the follow up appointment with the doc to get the results. And, amazingly enough, it was actually pretty good news...for once. And since I don't want to keep you waiting any longer:

Clean scans!

Blood work was NORMAL!

Spots on the liver, lung, and kidney were all determined to be cysts that the doctor feels do NOT warrant further concern.

The doctor is happy, so I guess that means I should be happy too. And I am, honest. But...well, it's a little weird. I told almost no one the news all day long. Because it did not feel real; like maybe I was jinxing some cosmic force by saying it out loud and getting just a little excited about it.

But, by late afternoon, I was starting to get the texts and emails of concern as people who knew that I had this appointment were in a small panic when I hadn't been disseminating any news whatsoever. So I had to start texting people...and posting it on Facebook...and now, finally, putting it here. Good news for now.

Next round of scans will be April. I'm not sure I'll know what to do with myself.

Oh, yes I do...we're going to Hawaii, which will feel like such a nice reward.

Christmas came just a little early this year in the Yusko household. As one friend put it: Best. Christmas. Present. Ever.

Now, before you worry that I won't have anything to keep me occupied, please note that there's still a lot of things that I have to deal with in the New Year which will definitely keep me busy in January!

The secret (as in, I wasn't telling anyone about it because I thought it signified that the cancer had come back) pain I've been having turns out to be lymphedema. This will require physical therapy. I'm actually hoping that maybe I can get one appointment in before we leave for vacation to start to manage the pain. Which is remarkably annoying, and now that there's an better than average chance I can do something to mitigate it, I'd kind of like to get that started.

Doc also did a big "I told you so" when I told her that my New Year's resolution is to get my PTSD under control. So that maybe I can go back to work someday without wanting to kill people. (Seriously, one of the options on the doctor's "how do you feel?" questionnaire each time is "thoughts of violence towards others." Keith will never let me circle it!) I love that the doc just smiles at me with her "I'm pretty sure I told you that you were a crazy person and not ready to go back to work and needed to get a major handle on your craziness before trying to re-integrate into society" look. So, now she's taking charge of getting me help on that front with one of the amazing doctors at SCCA who specializes in my kind of crazy. This is priority number one in January, honest! Especially because I think the symptoms are actually getting worse and almost caused me to bring down the plane to Vegas with a panic attack. Good times. Especially if you were the couple sitting next to me on the plane who were not related to me.

Until then, I now have some great new meds to keep me sane...which also have the side effect of MAYBE getting the menopause craziness under control (or at least making the symptoms liveable). Yes, chemo induced me into menopause (like a ton of bricks). Yes, tamoxifen makes sure I stay there. Yes, I took my ovaries out and compounded the problem. Holy crap, did that ever compound the problem. It's like living in a sauna here 24/7. I've given up sleeping through the hot flashes because it's just easier to deal with them while awake and watching TV (and playing on the computer). I've been going to bed around 3:30-4:00am every night and getting up at 6:15am. Then maybe going back to sleep from 7:30-9:30am. I'm sure this lack of sleep has nothing to do with exacerbating the PTSD symptoms AT ALL, right?!

As I type this I realize that exactly one year ago today, I was headed to my first round of chemo. So I guess it's only fitting that I got some good news to mark this "anniversary." WOW. What a difference one year can make. I can't even begin to do a coherent post on how I feel about everything that's happened in the last year (and then some). I'll save that for another day...maybe as I'm relaxing on the beach.

Instead, I thought I'd put this montage together of my journey. Now, it took all of 2 minutes to make this using a fun new app I was playing with on my phone (which appears to have cropped the bottoms off of every picture, but I'll figure out how to fix that on the next montage I make). And I was just quickly scrolling through the pics on my phone. But they are in order from start to finish, so it's interesting to watch. Enjoy the ride with me!

And might I just say...WHEW! HALLELUJAH! THANK YOU! AMEN!

A New Doctor and a New Plan

Because you can never have enough doctors on your team...or doctor visits on your schedule...I now have a new one: a surgeon specializing in gynecology. Yippee.

You see, the estrogen in my body is what is trying to kill me as it's giving the cancer something to feed on. I've been on a daily dose of Tamoxifen (anti-estrogen therapy) since August, but the oncologist has felt all along that it would be benefial to my long-term prognosis if I would consider having my ovaries and other parts removed. Initially, we agreed to discuss this issue further after radiation.

Well, guess what? Radiation has come and (thankfully) gone, so let's discuss it. To be honest, there's really not that much discussion that took place.
Me: "So, I need to have them out? Can I have it done before my calendar year out-of-pocket maximum expires? Yes? SOLD!" Don't need them, don't want them.

Yep, that was the end of that appointment. Didn't research the pros and cons, didn't look anything up on the Internet, nothing. Because frankly, I'm just exhausted, and maybe don't care as much as I should. I'm an expert patient now, so bring on every medical procedure that you can think of. Really. Bring. It. On.

I left with an appointment to meet with this new surgeon and off I went.

And I think that the appointment with this doctor took a grand total of 15 minutes.
Me: "So, what's involved? How soon can we do it?"
Dr: "Blah, blah, blah, robots...blah, blah, blah hospital. I've got an opening in November."

DONE and DONE! Another surgery on the books for the beginning of November. The pre-op appointment is this Friday (no, I have no idea why the pre-op appointment is so FAR in advance of the surgery, but that's not my job), so I'll hopefully have more details about what this entails.

Right now the biggest decision that I have to consider is how long I'm going to be out of work this time? Hussle back and salvage sick time for the spring? Or burn all the time and come back in the New Year refreshed, rested, and maybe healthy? Hmmmm...

Cancer Buddies

Funny story:
Teenage boy has had a "suspicious" mole on his cheek for, um, a few years. As per usual with our family, we have ignored it. Until now. After this summer, it really is looking stranger.

So, I make him an appointment at my dermatologist (who diagnosed the immediacy of having the strange spot on my foot removed), but I don't tell him. Because, let's be honest, we've worried enough about cancer in our house this year, teen boy especially (though he would NEVER admit it).

On the way to the doctor is when I actually tell him why we're going. And we had a pretty funny conversation. And I remembered that he really is a great kid who I love dearly, even if this past year has NOT been proof of that.

He decided that we were going to be "cancer buddies." Because he's as much doom and gloom as I am, and was sure that he was going to have skin cancer. I can't really recreate the conversation, but it reminded me why we get along so well...same grim sense of humor!

Oh, and it turns out, there was nothing to worry about. Mole was completely normal. So, he's not going to be my cancer buddy after all...THANK GOODNESS!

So What's Next?

I had my first follow-up appointment today. Because God forbid they even give you a week off from going to the doctor. Two whole days...whoohoo!

But it is good to go in for this one, because it's time to start planning my future and all the follow-up care that will become my life moving forward.

Here's what I know:
While it would be LOVELY if there were a magic blood test or scan that they could do to say that I'm "cured," there isn't. Which really sucks when you try and answer your kids' questions about "so, are you okay now?" Sorry, kiddos, I just don't know. I'd like to think so, but it really is pretty up in the air because of how angry my cancer has been this whole time. And the rest of my life is going to be one big unknown.

(On an aside, this brings up a whole host of weirdness regarding how to think about yourself and answer people's questions. How do I know if the treatments worked? Am I a "survivor" now? I don't think that I am. I mean, I survived this horrible year of treatment, but I don't think that I get the official "survivor" label until I've been cancer-free for 5 years. DO YOU KNOW HOW LONG THAT IS???!!! How do I know that I'm better? How do I know if the cancer comes back? Basically I've been told, if I'm still alive in 5 years, then the treatments worked. Awesome. For the rest of my life, every time I feel "bad," my first inclination is always going to be that the cancer is back. Again I say, awesome).

In two weeks, I'm scheduled for another mammogram. But this is only on the non-cancer (right) side. The left is too radiated right now for a mammogram (or any other scan) to be useful. Another mammogram (both sides) to follow in 6 months, with additional breast MRI then, and every 6 months (maybe 3) after.

Then I have a CT scan in 6 weeks to assess the "spot" on my kidney. Hmmm, thought it was my liver? "Oh no, we've decided that one is a cyst. Now we're concerned about the spot that's growing on your kidney." WTF???? When did we have this conversation???? Never mind, I'm actually past the point of caring. Schedule the CT scan and then we'll talk about it. Good times...

After the CT scan, I will have another appointment with the chemo doc (who, after you complete your treatment regimen, becomes your long-term care physician) to talk about the results. There will also be a blood test to check all my levels. And they are going to do a thyroid check because she thinks based on how I feel right now that it's possible that chemo has really messed up my system. No shit...you think??!

I also get to add another doctor to my team. There is strong discussion about having my ovaries removed, so I need to contact the surgeon who specializes in this to talk about it, and hopefully get it on the books soon. Better be before December 31st is all I can say. I am NOT paying any more yearly out-of-pocket maximums! Two years of that was enough for now, thank you very much!

I get to continue taking the daily Tamoxifen dose because I appear to be doing fine on it. Actually, it's because I never looked up what the side effects are so I don't know what to complain about. She said it is probably a good thing that I'm blaming some of my current ailments on the residual effects of radiation and/or chemo and don't know enough to blame them on Tamoxifen.

The radiation burn hurts (deep down, through layers of skin), and is continuing to get exponentially worse each day. This is expected, and will likely continue for about a month before turning the corner and starting to heal. How many times can I say, awesome?! It's beautiful...this is about 1/4 of it. Was really funny when the girl child asked, "mom, why is your skin so red?" I just stared at her until she figured it out.  

My "discharge" instructions from treatment include the following phrases:
(1) No alcohol consumption
(2) Don't gain weight
for the rest of your life.
(or something resembling these...I can't find the form to verify the exact wording). Why? Because my cancer responds to estrogen (estrogen positive) and alcohol consumption and weight gain encourage the production of estrogen (who knew?). I am also on Tamoxifen, and discussing removal of my ovaries to further limit estrogen in my system long-term. What is really funny about seeing these statements in print is my reactions to them.
(1) Shut up, I will be having a mojito to celebrate the end of this LONG and PAINFUL year. Maybe TWO!
(2) It's your fault I've gained weight!!! All the damn steroids, and treatments, and throwing me into chemo-induced menopause, and should I continue? UGH! 

Oh, and she laughed at me when I said that I was scheduled to go back to work on the 1st. Laughed. I believe that the words she used were "mentally unbalanced." (Honestly, if she could have committed me right then and there, I think she would have. She's already called twice since I've been home to access my mental well-being and offer phone numbers of therapists. I'm sure this had nothing to do with the complete breakdown I had in her office). There's a giant form you have to fill out every time you meet with the doctor listing every imaginable symptom you could be experiencing. I always joke about making a big circle around everything just to cover my bases. Today, I was actually reading some of the options: feelings of anxiety...anger...thoughts of violence toward others...hmmmm, I believe this process HAS made me a little angry. Can't imagine why???!!

On a positive note, it's been suggested that I must have a party to celebrate the end of the day-to-day madness of this cancer. I concur! However, seeing as how there is no Katy Perry concert upcoming that we could all attend together, I'm pretty sure that I don't have the time, energy, or $$$ to organize such a fete (though perhaps my insurance company would like to kick in some cash). And I'm surely not cleaning my own house to have you all over. I love you, but maybe not that much...not right now. Did you not read the paragraph above :violence toward others?? So, if there is someone out there SUPER inclined to be that person, feel free. I'll be there! With my Katy Perry wig. And I will be drinking a mojito!

Where I Was One Year Ago...

One year ago today, on the first day of another school year, I was not at school in my library like I normally would be.

Nope, last year I spent the first day of school at the doctor's office for an appointment with a surgeon (who would later become "my" surgeon) to talk about the lumps that were about to take over my world.

Last year on the first day of school, at that first doctor's appointment, I had already had a mammogram and an ultrasound, both of which were inconclusive (soon to be the story of my life). I had told precisely no one about the lumps. Well, that's not entirely true. There were maybe a half dozen people that knew only because I couldn't manufacture a good enough story about why I'd be missing the first day of school on the spur of the moment.

Keith can back me up on this, but during that first appointment with the surgeon, we heard words like:
"can't possibly be cancer..."
"unlikely to be cancer..."
"you're so young..."
"I wouldn't worry..."
"99% sure it's not cancer..."

At the end of the appointment there was no real urgency to get a surgery scheduled to perform that first lumpectomy. I took her next available appointment, which was over one month later.

And the rest, as they say, is history.

Fast forward to today, another first day of school.

Obviously a LOT has changed. My daughter started middle school...not at her home school (mine), but at a choice school she really wanted to attend. My son started his junior year at a new school...one that will give him a fresh start after what we like to call "the year we are going to forget." Both of them are jumping into new adventures at places where they barely know anyone, and I couldn't be more proud of both of them.

And me? I'm still not back at school to start this first day. (Though I did get to spend my morning with one of my favorite Evergreen teachers who recently retired, so it felt a little like being there for both of us). And because of continued treatments, I probably won't be back in the building until October.

And as for what the future holds for all of us? I don't know. I do know that I learned a lot this past year...about myself...my family...what is really important...and what isn't. And that's an entirely different post, so stay tuned. 

But I just wanted to take a minute to mark this "milestone." And send out good wishes for the start of a new, and hopefully better, year for all of us.

It's Groundhog's Day All Over Again

Yesterday marked the end of radiation, week 3,000...or something like that. 

Lather. Rinse. Repeat. 

Or, as one friend put it, "your life is kinda like Groundhog's Day, isn't it?" Yep! That's exactly it. No kidding, it is so weird to live the same day over and over and over. I kinda feel Bill Murray's pain now.

The only remarkable things about radiation this week were: 
(1) the day that ALL the handicapped spots were taken in the parking lot. This was definitely a predictor of how slow things were going to be that day. I knew we were in trouble from the get-go...

(2) at the weekly visit with the doctor, he was stunned at how well my skin is doing. Holy crap! You mean something has actually gone better than expected? What?! That is completely unheard of for me, so I'll take it!! KNOCK ON WOOD that it holds up through the remaining treatments. And a thank you to the gene pool that allowed me to have good skin I guess.

(3) I think it's possible that I am finally getting over the PLAGUE that I caught last week. It's been almost TWO WEEKS now. UGH! Chalking this one up to continued compromised immunity. Looking forward to not being so susceptible to germs...some day...

(4) I've been really tired this week. So. Very. Tired. Had figured this was coming. Doctor thinks it might be low blood counts, but decided to chalk it up to the aforementioned plague (see #3). He will be more concerned if I'm still dragging at the end of next week. 

So, I think I can see the light at the end of this radiation tunnel. Three more weeks...if I've done the math right (which it's possible I haven't because I'm still stupid from chemo).

In Which I Spoke Too Soon...

Damn it! I knew posting that Music Monday yesterday and being all excited to start radiation would come back to bite me in the ass!

Through NO fault of my own, but entirely due to many doctors not understanding what/how the others were thinking, I did not start radiation yesterday. Ugh.

Soooo complicated to explain what/where/why it went wrong, but here's a quick update with a "new" plan of action:
(1) Yesterday, doctor appointment with the surgeon to get the "okay" for radiation. Which she gave...I think the appointment lasted 6.7 seconds. And yet, I still love her.

(2) Today, doctor appointment with the chemo doc to talk about my next round of drugs from her. Nope, no more chemo, but now I am "well" enough to start Tamoxifen. This is a pill that I will have to take every day for the next five years. DON'T FORGET to take it every day, she says. Ha, ha, that's funny. Have you not read my post about how I can't even remember to take my vitamins??? (I do have awesome new daily pill dispenser, FYI! Thanks!)

(3) Tomorrow, doctor appointment with the radiation doc. (See, you people think I'm making it up when I say that I've had 9,000 doctor's appointments...I really think this might not be an exaggeration). This is what I've been calling "practice radiation." I've now been given the proper term: radiation simulation. I think this will make my parents (and some of you who have voiced concerns over the fact that they're practicing on me) feel much better about the whole situation. Simulation is where they tattoo the spots they want to radiate (yes, actual tattoos...that are permanent...lucky me! I hope that they're "X marks the spot" tattoos!). Then they feed me through a CT scan machine for the better part of TWO HOURS (WTF??? Can I read a book while this is going on? Two hours?! One friend suggested I sing, loudly and badly, the entire time unless they let me at least listen to a book). The imaging is then given to a ???? (am not clear on this part, perhaps a doctoral candidate in physics?) who determines all the angles and whatnot that I need to be given the radiation so that it will do the maximum good with the minimum damage. Remember, one of the 3 areas that they will be radiating is in line with my heart, so my choices are heart damage from radiation, or lung damage. I opted for lung. And hopefully whoever this person/computer is that calculates all the trajectories is brilliant and finds a way to avoid both.

Will let you know how it all goes. And when my start date ends up being. Rumor has it, it takes a week to make all the necessary calculations, so hopefully will start on the 25th...or 26...thinking with my luck it might be the 29th. 

In Which My Life Turns into an Episode of House

Seriously, my life could not get any crazier. 

First off, let me say, I am a HUGE fan of the TV show "House." HUGE. FAN. I am positive that I've seen every episode at least twice, and am thankful it is one of the few good shows that has re-runs airing late at night when I can't sleep. I can actually tell you which channels at which times the re-runs air if you're interested.

Now, to the funny part of the story...

Memorial Day weekend (Sunday), I am watching House re-runs. Because why wouldn't you if they are on?! Have you seen the show? Then you know how with 5 minutes to go, Dr. House swoops in with his brilliant diagnosis and saves the day. In this particular episode, (which I know I've seen but I've kept watching on this day because I can't remember what the medical mystery was), with three minutes to go, House finds a spot on the bottom of the patient's foot that turns out to be a melanoma that has been causing all the cancer-related symptoms (because melanoma is cancer, right?). When they show the "spot" on the bottom of the guy's foot, my brain says, "Hmmm...that looks a lot like the spot on the bottom of my foot. You know, the one that's been there for probably three years, and just appeared one day? Dark purple/brown/black, never goes away, never changes color. Hmmm..."

Of course the first thing I do is start Googling everything I can to see if this is a real thing or just made up for TV to make Dr. House appear even more brilliant than I know he is. Holy crap, it's real. You can get melanoma on the bottom of your foot. Double Holy crap. There's a healthier than average link between skin cancer and breast cancer and vice versa. AWESOME!

Second thing I do? Start laughing! Uncontrollably. Because, seriously? What else are you going to do?

Third thing I do? Mention all this to my husband because this is the first time I've actually told anyone about said spot on foot. Because why would you?!

Fourth, fifth, and sixth thing I do? Stop surfing the Internet. Demand dermatologist phone number from a friend who has a good one (but I refuse to tell her why. Good thing she's on vacation for the weekend and not too curious about details). Count down the hours until Tuesday morning when I can call for emergency appointment.

Tuesday morning, I make Keith call because I cannot do this and keep a straight face. We do NOT mention anything about the House episode. Truthfully, upon further inspection (all weekend long), I must admit the spot has changed slightly since chemo started. Now it is lighter around the edges with a dark spot in the center. So along with my entire medical and treatment history, this is why we tell them we are concerned. Soonest appointment I can get is Friday. Good Lord.

Friday 5/31 is appointment day. No, I do NOT say, "so, I was watching this episode of House over the weekend..." because even I know that sounds like CRAZY TALK. CRAZY. TALK. We talk about my cancer/treatments, she looks at the spot on my foot for 3.6 seconds and says, "Yeah, that's got to come out within 30 days." SUPER! Good thing I already have a surgery scheduled for 6/14, and just happen to have the best surgeon around who can do all these things for me. It'll be one stop shopping.

The scoop? It could be melanoma, but might not be. However, it MUST come out because of it's stronger than average likelihood of being melanoma, and no one wanting to risk leaving it alone, especially me! When it is removed, it will be biopsied so we'll know for sure, but at that point it will be out so unlikely to require further specific treatments.

So now my surgery this Friday is a Three-For-One: (1) Port removal; (2) Re-incision/scraping around for breast cancer cells; (3) Removing this "spot" on my foot. Lucky me. It means I won't be able to walk on my foot for at least 2 weeks, and I can't use crutches for most of that because of the re-incision surgery. Super fun.

All in all, it's been a funny couple of weeks here. I self-diagnosed via a House episode. I've spent more than my share of time wishing Hugh Laurie was my doctor (because that might actually make all of this worth it). And I've learned some valuable lessons:

(1) Always pay attention to spots and lumps.

(2) Never find something wrong with you on a weekend or a Holiday, but especially a Holiday weekend.

Against Medical Advice

So, I have finally reached my decision about what treatment comes next! For those of you keeping tabs, the delay in moving forward was because I was being a "bad patient" and not wanting to have a double mastectomy. It just never felt like the right decision for me (damn you Angelina Jolie for "coming out" when you did because if I have to hear one more person point that out to me, I might scream). 

After WEEKS of tests, scans, and doctor's appointments with EVERY doctor on my "team" and then some, here's what I can report:

I am going Against. Medical. Advice.

(1) The breast MRI I had done two weeks ago came back CLEAN (This is a miracle of God, BTW)!

(2) I have had all the genetic testing there is to have and I do not carry the BRCA gene. Yeah for me...and my daughter...and my son and any kids he might have some day...and my brother's kids (again, some day...ha, ha).

(3) It's all about risk/reward for me, and no one could sell me on the fact that the reward of this surgery actually outweighed the risks. In all honesty, I'm more likely to die from a heart attack now (thanks to the chemo), leukemia (again, thanks chemo), or lung cancer (chalk that one up to radiation) before the breast cancer came back...if it ever comes back. I'm really not increasing my risk by any significant percentage over the course of my lifetime.

I will NOT be having the recommended double mastectomy (bad patient = me). (Some day, I will tell you the story of how I played my doctors against each other like a teenager manipulating their parents. It was quite funny, and what happens when you have three doctors with very distinctive personalities). 

Instead, on 6/14, I will have ANOTHER surgery (a "re-incision," my 4th) just so they can open me up and scrape any microscopic cancer cells that might be hiding. Honestly, I really don't think they need to do this but the radiation oncologist said it would make him feel better. Fine. Whatever. 

Somewhere around 7/10, I will begin radiation treatments, which will be every day, 5 days/week for 7-8 weeks, taking me through mid-September-ish.

That's what the plan is right this minute. Thank you for your continued support and prayers!! And for not posting links to articles about how amazing Angelina Jolie is and how I should just suck it up. 

So, What's New?

Holy Crap, there still is no plan moving forward. I am hoping that next Tuesday's appointment with the radiation oncologist (who likes to explain things in GREAT detail) will provide the answers I need so that I can have a "schedule" for what's next.

Besides the fact that I've had 4 scans and 4 doctor's appointments and 1 major meltdown in the last two weeks...Why the delay? Because I'm being a bad patient, at least according to the doctors (who I love and I know they have my best interests at heart). But the "best" strategy moving forward (according to them) involves radiation plus multiple surgeries over the course of the next 2 years, where I'll be out of commission for weeks and/or months at a time. 

And I'm no longer sure that it's the "best" strategy for me. Decisions...decisions...

FYI, being a cancer patient sucks :)

I will keep you all updated as soon as I have a plan that I feel right moving forward with. Thanks for the continued support and prayers.

A Week of Scans...and a Weekend to Wallow

Because I know that you were concerned I might not know what to do with myself without chemo to go to, never fear. The doctors obviously wanted to make sure that I had something to keep me occupied.

I had a scan and/or doctor appointment every day last week...and I only wish that was a joke. I had to have a post-chemo echo (to see how bad they damaged my heart with the chemo), a CT scan (that's the fun one where you get to drink the radioactive sludge), and several follow-up appointments to discuss these scans with the surgeon and the oncologist.

And because that wasn't enough fun, I have two more scans this week (MRI and mammogram), an appointment with a reconstruction surgeon, and ANOTHER meeting with my "regular" surgeon. HOLY CRAP! Have I mentioned that I am beginning to hate being a cancer patient???

I took the weekend to wallow in the sucky-ness (shut up, I don't care if that's not a word) that is my life right now. And how much I didn't like the initial results of my scans.

So, shut up already and tell us the news, right? Here's what the scans show: There are still spots on my liver, and my kidney, and my lung. And the lymph nodes that were "lighting up" initially. AAAAH! Are you KIDDING me?! Now, they are small, and they haven't changed in size, so several doctors have said, "yeah! Good news!" But I say, "WHAT? 20 weeks of chemo and the scans aren't CLEAR? The spots haven't gotten smaller?" I think I'm going back to using "craptastic!"

All I really wanted was some positive result. I've played along all this time and put my body through hell all these weeks and I get "no change?" To say the least, I was really disappointed. And I lost it at the appointment on Friday where we discussed these scans. LOST IT! Like, she had to prescribe me calming meds because I think she thought I was going to leave there and kill someone. Keith wins the prize for betting I wouldn't fill the prescription...I haven't...but I think she felt compelled to mellow me out. Or maybe legally required not to send a crazy person out into the world.

Then I decided to wallow in self pity this weekend because you know what? You just can't have a positive attitude every day. And I felt I was due for a good wallow in how crappy life is sometimes. 

I've come out of that funk now, and am hoping to get through the rest of these scans and appointments and hope for a plan moving forward. Surgery? Radiation? What's next? These are questions that you all want to know and I'm hoping answers are on the horizon.

I appreciate all the thoughts and prayers coming my way. I feel the love and the strength, honest, and I definitely need it.

Stupid. Cancer.

Did She Just Call Me Old?

This past week during chemo, I was talking with the doctor about all the symptoms that I'm feeling. Or rather, not feeling since everything is going numb little by little. 

I started by talking about how I can't feel my hands, or feet, parts of my legs, sometimes my face...boy, neuropathy sure is fun. Then I was mentioning how I had been in excruciating pain before the trip. Probably an 8 out of 10 on their smiley-to-frowny face pain scale (which is pretty funny, actually. At some point I'll have to get a picture of it so I can post it here). My shoulder had been hurting so bad, I was considering stopping the chemo if it got any worse. 

Well, now my shoulder is just numb. I can't feel anything...pressure...temperature...not a thing. Super. So, the pain is gone for now, but the neuropathy is getting worse. Ugh.

And while I'm complaining, the doctor asks, "Is it possible that you're just old and that's why you're feeling this pain?" Did she just call me old? Did I just pay for that? As Keith pointed out, the teenage boy can tell me that for free...and does ALL THE TIME. Well, that sure got the doc laughing (which is now our goal each week). 

All this time you've been telling me I'm "so young and in good health" and now I'm old?! And if I am, it's only because chemo has aged me a thousand years during this process! 

Thank God there's only two more weeks of this to go. While the doc does think that the symptoms will just get worse over the next few weeks, and reminded me that neuropathy takes a LONG time to go away after chemo is done (and sometimes it never does), she did remind me that we are so close to the end/goal, that it would be a shame to stop now. So, persevere I will.

But I'm not sure that I'll stop complaining...

And I guess it's time to start getting religion with the glutamine (which is HORRIBLE, by the way. Makes every drink taste and feel like chalk).

Chemo, Week 18

Holy Crap! Who's idea was it to do chemo at 9 o'clock in the morning when coming home from vacation at 2am???? What moron thought that was a good idea? That could not possibly have been me, right?

Yes, I had to come back from a gloriously relaxing week of vacation directly to week #18 of chemo. Really tough to be motivated to do that. In fact, when the alarm (my husband and teenage son) went off at 8:30 to say "GET UP!" I rolled over, cracked one eye open, and said, "Hell NO!" Yep, I became that patient. There was no way that I was getting out of bed. In fact, it's possible that I said something like, "I double dog dare you to get me out of this bed." It had to be something like that because the teenager was laughing. I probably sounded like him when he's been woken up.

So, the loving husband, who could sense his life hung in the balance, called and moved the appointment to 12:45pm. So much better. Well, except for the fact that getting there after noon meant we didn't end up leaving the hospital until close to 6pm. It was a LOOOOONG afternoon.

Nothing eventful happened...

And guess what that means? Only 2 more chemo treatments left (which will now be on Tuesdays). It's almost unbelievable to think about. I might actually make it to the end of this first part of the journey.

I Revolt...And Win The Battle

Yesterday was the 12th week of chemo! Eight more weeks to go! A small milestone to celebrate. (There are many more surgeries and treatments after chemo, but this is a start). However, it marked another milestone: I won a battle with the doctor!

It all started with the typical weigh-in...this week I gained FOUR MORE POUNDS...IN A WEEK. That's SEVEN pounds in TWO weeks for those of you keeping track, and 12+ pounds in the nine weeks I've been keeping track. That's 10% of my body weight!

Let's just say, I went CRAZY. As in every nurse at the check-in desk started laughing at my ranting. Here's the thing, don't keep weighing me every week (which implies this is an important thing to track) and then not expect me to notice the number on the scale. Four pounds in a week? How do you do that? 

My very loud rant at the scale (which was very humor-oriented, not screaming-scary-crazy person ranting), continued with the nurse assigned to me. Lucky her! Keith, the nurse, and myself did have a GREAT laugh over this. Especially the one question where she has to ask, "Is anything swollen?" Yes, apparently my ass is. She was laughing so hard, she couldn't continue the questionnaire...and decided she probably shouldn't write that down. (Though I did double-dog-dare her to). I blame the steroids for this weight gain and said I was THROUGH with them. The wonderful nurse said I was welcome to bring it up with the doctor (and wished me luck, because she knew this was a mighty impossible battle to win).

When the doctor walked in about 30 minutes later, we laughed that the nurses hadn't warned her to stay away. I semi-calmly voiced my concerns about the steroids and this crazy weight gain. I mentioned that I was going to have to start billing my insurance for new clothes because nothing fit anymore. She listened to my concerns, agreed that the steroids could be the cause, and then she looked at my chart. "Wow! You weren't kidding," she said with wide eyes. No, I wasn't joking. Thank you for recognizing that gaining four pounds in a week is concerning!

Long story short, I win! She agreed to drop the steroids from the pre-med infusion regimen! HALLELUJAH! Now, I will have to wait until Friday to see if it makes any difference. Fingers crossed...

(Also, I am composing a post soon about weight gain, breast cancer, and chemo because it is a dirty little secret that no one talks about. I think that people facing this diagnosis should be prepared for all the things that they will face).

Biggest Loser in Reverse

The weight gain continues...Friday's scale reckoning saw a 3 pound weight gain in the last week. THREE POUNDS in seven days. That's what some Biggest Loser contestants LOSE in a week. Add that to the 5-6 pounds that I've gained since Christmas and that's NINE pounds gained in 8 weeks. 

So tired of hearing that it's because I'm not active...or my system is all messed up...once I start exercising it will get better. NOT TRUE! I have been getting out walking this week (and saw a three pound increase in spite of it). I drink more water than any person I know. And I don't actually eat all the "bad" things I used to because they don't taste good anymore. There is clearly something else going on here.

But no one takes me seriously when I complain that none of my clothes fit. My concerns are dismissed because I "look healthy." Here's the thing though, if I was any normal person with concerns about gaining 3 pounds in a week, my doctor probably would take me seriously. That's quite a bit of weight for someone my size to put on in a week...it would take a LOT of effort to do it.

I am convinced that the steroids I am given play a huge (ha, ha) roll in this. If there is one more week of weight gain, I might go postal on someone...stay tuned...

Allergic to Tape? Of Course I Am!

Because it has become quite a comedy of errors on chemo days, I thought I would post about my latest adventure.

Friday was my second round of Taxol, which is honestly WAY better than the AC dosing that I was getting. It is SUPPOSED to take about an hour for the infusion, plus 15 minutes or so for pre-meds, plus about 30 minutes for lab work. So, all told, I am only supposed to be there for two hours TOPS. At least, that's what they keep promising. Hasn't ever lived up to that. This past week was the kicker: arrived at 10:30am...left the hospital at 4:15pm. I wish that was a joke.

One of the biggest snafus that day was my allergic reaction to...medical tape? Band aids? The infusion needle stabbed into my port? I'm not sure, but it was immediate and painful and caused MASSIVE delays as I threatened to rip out my port.

Here's what I looked like about 10 hours after the reaction:

You can't really see the port in this picture, but it was so red it appeared to be on FIRE! And here I thought I'd have to save Allicia Keys' "Girl on Fire" for a Music Monday during radiation. Maybe not, because I was truly on fire.

Thanks to several people who have offered suggestions to solve the problem this week. Will let you know what works!

In Which I Hate Everything I Heard at the Doctor

I swear I'm trying to be a trooper through this whole process. And I do still have my sense of humor, I promise (keep reading for proof of that). But talking to the doctor on Friday before my latest round of chemo, I kind of hated everything that she was saying.

(1) My impending mastectomy and reconstruction sounds like it's going to SUCK for me because as we all know my cancer is "special." Traditional strategies for reconstruction probably aren't an option, and probably won't even work. And it could take up to a YEAR after radiation ends. Which will put it into another school work year...and insurance calendar year...(don't get me started on either of those right now). Yeah, more money and more sick days...

(2) Even though I think that the steroids they are giving me is actually what is killing me, she is still going to give them to me. I swear the migraines are steroid induced, and I know the weight gain is. UGH! However, on the plus side here, she says if I still get the migraine this go-round, she will agree with me and reduce the amount I'm given.

(3) Finally asked the big question: How do we tell if this treatment is working? Kinda wished I hadn't asked it. I'm the kind of gal that wants ANSWERS! TESTS! DEFINITIVE PROOF! Bring on the numbers people. Yeah, apparently it doesn't work like that. Basically it boils down to, if I'm still alive in 5 years, that's how they know this treatment worked. That's a pretty sucky answer folks! (Of course, there were so many funny responses to this, I promise you that Keith and I were saying all of them. Like, "And if you die within the year, then Whoops! My bad." Had the doc physically LAUGHING so hard, she had to stop her explanation. We won the day's prize for humor, so that was a perk I guess).

So no, there are no blood tests, scans, etc. that give me an "all clear" immediately following treatment. They are doing the best possible treatment based on my angry cancer and the positive results in others with similar cases. I totally believe this, and believe in them and the process. I have no doubts that this will work. HOWEVER, I'd like a little proof! Other than, "you come to the doctor every six months and we talk about how you're feeling and go from there." Because guess what folks? I was feeling pretty good before this whole process started and then these lumps (which no one thought was cancer) appeared and by that point I was already Stage 2-3.

Now, the one thing that I do have going for me is that I will get some scans right after these treatments because of the "unusual" lymph node and the spot on my liver (WTH? I don't remember anyone saying ANYTHING about the liver) that were "lighting up" in previous scans. They will check to verify that those areas aren't showing up anymore, so that will at least give me some sense of relief. 

But still! Sucky answer!