Monday, September 30, 2013

Music Monday

Another recommendation from a former student. At first I thought I'd never heard this one because I don't listen when radio personalities talk artist/title. But when I played the video I felt just a little bit cool again because I had heard it before!

Wednesday, September 25, 2013

Saying Thank You!

This past weekend was the 3Day Walk in Seattle. I was very lucky that the route passed close to my house so I could get out and cheer everyone on, especially those amazing friends walking for me (and many others who's lives have been touched by breast cancer).

Now, having walked the 3Day before myself (twice), I know what it's like to have people cheering you on...and passing out snacks. It is amazing how much farther your feet will go when you have some sugar! So I wanted to make sure that I was saying thank you (see my sign above) and offering some sugar treats for anyone that needed a little pick-me-up. 

Another fun thing about the 3Day is all the people supporting the event and the crazy costumes and decorating of vehicles that you see. Plus, I love to see the walkers that have come up with great team names. (Probably because I suck at such creative endeavors). I think the best one I saw this year was a group of guys calling themselves the "Chesticles." 

Once I figured out that the route would be in Redmond on Friday, I basically invited myself to a friend's house, who invited us to another friend's house where we camped out in lawn chairs in the front yard, eating hummus and drinking beverages while the walkers went by over the course of about 4 hours. Armed with a bag of candy to hand out, and a thank you sign that I had made, I was able to clap, cheer, and say thanks to everyone that passed by. It was a really fun time! And it reminded me why participating in this event is such a moving experience. (It also made me really want to walk in a 3Day again...soon. Maybe next year? I'd really like to walk with the whole family, but you have to be 16 so we have 5 years until AJ would be old enough. Maybe some of us (which one is going to take it for the team? Husband? Or surly teenage boy?) could walk next year...marking 1 year cancer-free. And then we could all walk in 5 years to mark that anniversary? Hmmm...this has potential...though I might have to start fundraising now. That's a LOT of $$$ to come up with).

Here are some highlights of the day:
I saw kilt guy! But I wasn't quick enough to snap his picture. Ask anyone that has ever walked a Seattle 3Day, and they will know who I'm talking about. LOVE THIS GUY!! And that he always a kilt and boots.

I was able to give a hug to someone I knew in high school but had NOT seen since graduation. What are the odds that I would have seen her amid the sea of walkers?! Okay, she saw me first, but you get the point...

Loved the people who painted their tractor pink and drove it around all day.

All the bicycle cops were sporting pink tires. Awesome!

I was presented with a "survivor" bracelet by this Seattle Police Officer. Normally, these bracelets are blue and black and worn in honor of fallen police officers. Someone in her precinct made them in pink/black for the event and she handed them out to those of us battling in honor of her own mother's fight with breast cancer. I did not get her name or her badge number/station, so I am incredibly lame, but am so honored to be wearing it. (Of course, when she pulled her vehicle over to stop and present me with the bracelet, some of the people cheering with me were scared they were in trouble for the beverages they were drinking, so that was a funny story in itself).


Here's a picture of my friend Julia and her group of friends (all moms of current/former Evergreen students).

Here's a picture of the Sole Mates (who were amazing enough to invite my family to join their families at their post-3Day dinner celebration). Two of their group is actually missing from the picture as they were not walking with the group at the time.

Here's my friend Deb and her son Nolan. So grateful to all of you that answered the plea and donated to the cause so that Nolan could participate in this experience! I think I might be interviewing him to find out what he thought about the weekend. Kudos to him...and his mom...I'm not sure I'd really want to walk 60+ miles with a teenager that was related to me. (Hmmm...maybe I should re-think my family fun idea above).

So grateful to all that walked! Glad to be there to say "thanks!" 

Monday, September 23, 2013

Music Monday

Here's a suggestion from one of my favorite former students. I actually listen to this one all the time, but I never used it as a Music Monday. So obviously I should.

By the way, expect more music suggestions from aforementioned high schooler...but this was the only one that she recommended that I'd even heard of (because I'm obviously not nearly as cool as I think), so I thought I should start with it.

Thursday, September 19, 2013

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 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!

Tuesday, September 17, 2013


Amazingly enough, this week marks the END of treatments! 

After 4 surgeries, 16 rounds of chemo, 1,000,000 scans and doctors appointments, I am ending 38 rounds of radiation today!!!!

Almost one year of CONTINUOUS ACTIVE TREATMENTS is finally in the past. 

Not even remotely close to the end of doctors in my life (in fact, I have my first "follow up" appointment Thursday), but this is something that needs to be celebrated, even if only for a moment.

Not much to say, so I thought that I'd share some pictures of the day:
(1) On my way to the last radiation! Stupid Cancer indeed!

(2) Cheers to being done with treatment! Forced Keith to celebrate with me at a restaurant he doesn't like. And, I have to say, I was monumentally disappointed by this mojito. I think the bartender was color blind and made it with lemons instead of limes. I am going to use this as an excuse to celebrate again.

(3) The "award" that they gave me for being done with treatments. I love that the pictures they put on it are all things that mean something to me and that they've come to know about me.

Wednesday, September 11, 2013

Caregiver Wednesday: Guest Post #1

Another post in my Caregiver's "series" (which may or may not happen every week, but will pop up here occasionally). I asked several of my cancer peeps if they had a caregiver that was willing to respond to some questions. The first one I am going to post here is actually from a long-time friend that, with her mom, was a caregiver to her step-dad. 

Thank you so much for sharing your story Jen! I have merely copied and pasted her honest responses. (All of my asides are in parenthesis and italicized).

Who were you the caregiver for? My step-dad.

What was the type of cancer? Glioblastoma Multiforme.

What was the treatment?  Craniotomy/tumor resection, oral chemotherapy, radiation, and gamma knife surgery. (It's amazing to me how much caregivers end up learning about the cancer and the treatments...sometimes even more than the patient).

What did day-to-day look like for YOU?  Since I wasn't living with my step-dad at the time, my day started with a morning phone call from my mom (the primary caregiver) updating me with his condition, plan for the day, and overnight issues.  During the time that he was actively receiving care (chemo & radiation) I would drop my son (2 1/2 years old at the time) off at a friend's or my husband would work from home so I could pick up my parents and drive over to the U for treatment (University of Washington Medical Center...I'm guessing this involved driving over a horrible stretch of freeway in this area and a bridge, based on where I think that they lived at the time. If you are from Seattle, you know that this is NOT a fun drive to do every day under the best of circumstances).  My mom isn't comfortable driving on freeways so all appointments/treatments required a driver. A family friend and I organized a driving calendar. (Based on personal experience, this is a terrific idea and SUPER USEFUL for everyone).

What was your "role" as caregiver? (Yelling at doctors, driving to appointments, taking over at home, all of the above?)  Driving to appointments, being on point for emergencies (there were several), on Tuesdays/Thursdays, the days my son was at preschool, I would come by their house to visit and help, providing opportunities for my mom to take a break every once in awhile, by being there at the house or being by the phone and calling in every 30 minutes to make sure he was okay on his own.

What was the worst moment for you?  There were many, of course, but here are just a few.  The first was visiting him after his brain surgery and seeing the confusion and pain on his face and then once we realized that some irreparable harm had been done. He never recovered his speech, motor function, etc.  Feeling helpless during times when I couldn't be at the house to help. Each downward spiral of stages such as when we realized he needed a hospital bed in the downstairs office, hiring caregivers to help during the at-home hospice time, getting him a wheelchair, and finally when we saw his own sense of hope start to fade.  Of course, the times he spent at the hospice center was heart-wrenching, and finally his passing. (I cannot even imagine what this was like. And I feel that it's a good time to point out that while I loved my caregiver dearly, I really wasn't the person that was checking in to see how he was doing. People would ask me, "How's Keith?" and I would say, "you'll have to ask him." Seriously, people, check in with the caregivers. Theirs is a HARD road and few people remember to see how they're doing).

Was there a good moment for you?  I think making the choice to spend Tuesdays/Thursdays at their house was a gift. I had just moved into a new house and my son had started preschool so my "free" time was limited as was my capacity for truly being on the "caregiving front lines."  These are memories I treasure, just sitting and visiting with both my mom & step-dad. (So true, Jen. Thank you so much for sharing this. It's sad that cancer makes many of us realize that there are more important things to life than the hustle and bustle of every day that tends to take over. I am so grateful that you had this time...that you took this time).

Did you have to alter your life to be a caregiver? If so, how?  Yes, any extra time I had needed to be focused on my parents.  Not only did I want to help with logistical issues (driving, schedules, caring) but my mom doesn't have other family to help so she truly carried the weight of the world on her shoulders.  As best I could, I tried to help her emotionally by listening and being a sounding board for those times when she cracked from all the pressure.  I spent a lot of time on the phone with her and tried to be as present as possible while juggling my own obligations.

What is something you wanted to say to the patient but never did?  When my step-dad was clearly nearing the end of his life and was in a coma, we each took turns with him, talking and telling him how he changed our lives and that we loved him and that he could go.  I'll never know if he could hear what I said and I know that my love for him was something he felt...but I don't know why everyone always waits until the "end" to truly say all the important things.  I guess I wish he knew that all along...he was my true dad. (Amen!! Thanks for that reminder!!)

What is the one (two? three?) thing(s) that people say/said to you that you wished they wouldn't?  The whole "he's in a better place" thing, was they really know that? Or advice about "clinical trials" and going to Mexico to drink goat pee and such.  I know they were trying to be helpful but my mom and I spent HOURS researching and were choosing a treatment plan that we felt the best about.  This sounds weird too....but sometimes hearing about how "so & so had the same thing and they're cancer free and dancing the tango in Vegas" felt like a lot of pressure and didn't provide the intended hope. (This sounds suspiciously like my "what not to say to a cancer patient" post. Better amend that to include caregivers also).

What did people do for YOU that you appreciated?  Helping with my son was HUGE, it meant the world to me that I didn't have to worry about him while we navigated these waters.  Also, the family friend that organized the driving calendar since that was a monumental hurdle for us.  We also had a friend that made little radiation care bags that had juice boxes and snacks in them...that was great! (See people, sometimes you can help the cancer patient by helping his/her caregiver).

What is one thing that you wish people HAD done for YOU?  My parents would have benefited from a "dinner train"...people certainly brought by food, but something more organized would have been great. (Many websites do online sign-ups now for free: CareCalendar, SignUp Genius, etc. make this very easy to do. So offer to be the person that organizes this so the caregiver doesn't have to). For myself, just people checking in with me personally would have been nice...I did have a friend going through the exact same things at the same time (she was just a few months ahead of me) so we spent many hours commiserating!  Camaraderie rocks!

What is the best piece of advice you could give someone that has to be a caregiver? Be prepared to go through a whole range of emotions...sadness, anger,'s not an easy road. You absolutely MUST get out into the "real world" from time to time to realize that there are other things going on besides cancer and hospitals. (There are??)  Also, part of your role is an advocate and this can vary depending on the severity and condition of your loved one.  For us, my step-dad needed a lot of assistance so we really spent a lot of time researching and have to be a doctor yourself to truly make sure your loved one is getting what he/she needs.  And...remember to hold onto a little bit of yourself so you don't lose you completely.

Again, thank you for being so honest and willing to share Jen. I know that it was a difficult time, and appreciate your insight into how we can all help others through the same situation.

Next time, some thoughts on caregiving from another long-time friend...who happens to be the person that started me on my library career path.

Also, those of you reading this...if you were a caregiver and/or had a caregiver throughout the cancer journey and would like to offer some thoughts, contact me! And if I've already asked for your thoughts (cough, cough, husband, cough, cough), this is your reminder to get me your responses!

Monday, September 9, 2013

Music Monday

I had never heard this song, but a dear friend from high school got in touch with me and said that I had to use it for a Music Monday. It is a song that another friend of his uses as his "cancer song." Good choice! Thanks for the suggestion...adding it to my playlist now!

Wednesday, September 4, 2013

Caregivers: Where Would We Be Without Them?!

Today marks the first in a series of posts that I will be doing about CAREGIVERS. This also serves as a hint to those of you that I asked to guest post (hint, hint, dear hubby, that also means you), to get me your responses ASAP. I've got the first two I need the rest of you.

First off, "caregiver" is a pretty generic term, and if you think about it, I have had so many people taking care of me and my family over the course of this past year and throughout my diagnosis and treatments. There are the people that have fed us, given me rides to the hospital, taken care of the kids, and helped us out financially. For all of these things I am truly grateful!

However, for the purposes of this series, "caregiver" means the primary person responsible on a day-to-day, round-the-clock basis for taking care of the patient and all of their specific needs. So, in my case, my husband Keith. (At the end of this series, I will be posting my thoughts on how amazing he has been throughout this entire process. But I'm not sure that I can be coherent enough right now to put my thoughts into words). 

Let's just say that he's been a rock and exactly what I needed. And sometimes I'm amazed at what I find myself asking him to do. Or rather, not asking him to do, but needing him to do and not wanting to admit it. 

When you think of yourself as a pretty self-sufficient person ready to take on the world, and then you find yourself in a position where you cannot even come close to being that person you once were, it is sometimes VERY HARD to admit that you need someone to take care of you. And you might not be the best patient. And you might do stupid things like trying to carry heavy crap across a soccer a field when you shouldn't...or unload boxes and boxes of textbooks at work...or try and stand up long enough to cook dinner. You should see Keith and the kids respond to my follies: Keith just looks at me with that "would you just give me the blankety-blank cooler before you actually do die and I have to carry you across the field too?!" look; cute little girl child hovers around me waiting to prop me up, or pick up everything; and surly teenage boy gives me the huffy teenage eyeroll before saying, "seriously mom, just give me the _______/shut up and put on my sweatshirt/give me the keys, I'm driving." 

Next week, I'll be posting the first of my "guest posts" from people that I know who have been caregivers (which, by the way, is a SUCKY job that I'm not sure I'd be good at). Until then, I thought that I'd start with a link to a great article that I read this summer about just this problem: letting a caregiver actually take care of you. It's important to understand that caregivers want to help you and taking care of you is probably the only way that they can feel like they are doing something to help you. It's kind of a give-and-take relationship that you both get something from. Seriously, you have to read here. 

And if you've been checking in here often enough, you'll understand immediately why I love this article so much. HILARIOUS! And the scene he describes is almost identical to ones I've had with my family on more than one occasion (minus the cool, international locale).

Tuesday, September 3, 2013

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 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 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.

Monday, September 2, 2013

Music Monday

Finally, some more music suggestions for you. Thanks to several people who have sent me recommendations!

This suggestion came to me by a friend who used to teach at the same school. Of course, I had to start with this one, by my new namesake, Katy Perry. Seriously, I really need to go to her concert the next time she rolls through town. Who's with me? And I probably won't even stick out if I wear the blue wig!

Sunday, September 1, 2013

Because It Needs to Be Said

Okay, I'm just gonna throw this out there because it needs to be said...

You know that post that I wrote about "what not to say to cancer patient?" Yeah, the one that went viral and now everyone is reading? The one all of you have freaked out just a little bit about?

Here's the thing...if you are worried that you have said the wrong thing to me or someone else that you know, you are NOT the one I was writing the post for. If you are concerned about what you said, odds are you didn't say the wrong thing. 

And keep in mind, it was really about just helping you understand how many questions we patients get asked on a daily basis.

Also, my mom has decided that none of the rules apply to you if you are the mother of the patient, so she wanted to make sure that I added that as a disclaimer. Got it!