An Open Letter...

In lieu of this week's Friday Five, I've decided to post this letter, even though I'm not really sure who my target audience is.

Dear.....

It is hard not to reflect on your life when you have taken the journey I have over the past 20+ months. I struggle with not letting cancer define me, even though in all honesty, it has completely redefined who I am. And I know that in writing this letter I will likely offend all of you at some point, or make you sad, or make you angry, or all of the above. Please know that my intention is none of those things.  I am not writing this letter so that you will take pity on me or treat me with kid gloves. I am simply trying to be honest and say all the things that I never say when you ask me, "How are you doing? No, REALLY, how are you feeling?" Quite honestly, you probably don't want to know the real answer to that question, and you'd get tired of hearing me rant about what it's like to be "the new me" anyway. 

You're right, I look pretty good right now. Thank you for noticing. My hair has grown back (and it is an awesome color); I have color in my cheeks again (mainly because we went to Hawaii); I don't look like a sick cancer patient (because I'm still up about 15 pounds from when I started this journey. What I wouldn't give for clothes that fit). If you just met me, or passed me on the street, you would never know the road I've traveled. And that is weird to me. There are at least half a dozen people that I work with now who didn't know me "before." Throughout my life, I will continue to meet people along the way who weren't there during the treatments that knocked me on my ass. They've never read this blog. They don't know that what I've been through has re-shaped my view of the world. At this point in the journey, cancer feels like such a defining experience that I feel like I need to wear a badge that says, "Survivor" or "I kicked cancer's ass" or something. Shout it from the rooftops? Maybe. Will it ever be something I don't feel compelled to start a sentence with? (I don't actually start my sentences with this, by the way, but there are so many times I feel like I have to). So maybe what I'm really trying to say is, you just never know the journey that anyone has been on or is currently traveling. Kindness moves mountains...maybe we should all start practicing more of it?

When I say, "I'm tired" in response to your question, here's what I probably mean:
a) I AM EXHAUSTED. I WANT TO CURL UP IN A BALL AND DIE FOR A FEW DAYS. I completely understand that being back at work...at least full-time...is not helping the situation. One friend recently told me that she was out of work for 3 years before going back. Yeah, that sounds like about how long it will probably take for me to feel like a functional human being again. Folks, cancer knocked me on my ass. And then backed up and ran me over. And then did it again and again and again. The chemo regimen I had is called "the red devil" for a reason. There are days where I really and truly cannot get out of bed...for no real reason other than my body won't function. Still. And the PTSD-and/or-menopause-induced insomnia doesn't help.
b) EVERYTHING HURTS. Everything. And lymphedema is a pain in the ass. Not sure why one day is better or worse than another. If I sit or stand too long in one position, I cannot move. Watching me get up from a seated position (at a restaurant, at my desk, off the couch at home to go to the bathroom) is HILARIOUS. It takes sometimes 10-100 steps for my hip/knee/back/leg to actually function properly so I don't look like a 90-year-old hobbling down the hall. At least it makes Keith and the kids laugh when they see it.
c) I forgot the question, but you were probably asking how I was doing, so I reply with my canned answer.

Here's the thing, every one "does" cancer differently. No two journeys are the same, and I am only speaking to mine. Do I wish I could run a marathon right now? Sure. Do I wish I could have run a marathon during treatments? Actually, yes. Am I happy if someone you know has the energy to run a marathon during the middle of chemo? YES! I think that's terrific. But THAT'S NOT MY STORY. Chemo made me want to die. Curl up in a ball and die. I remember one stretch where I didn't get out of bed for SIX DAYS. And I'm sure that I'm so tired now because I wasn't very active during treatments, but save the lectures because I was too busy trying not to die to give a crap about getting exercise. I was way too exhausted to climb the stairs some days. And I wish I was exaggerating.

When I say, "chemo: the gift that just keeps giving" in response to your question, I might mean a variety of things:
a) I am stupid. HOLY CRAP, legitimately stupid. I have NO ability to retain information. I cannot hold a conversation with anyone, especially students. It hurts me to listen to myself talk about books with kids now because half way through, I forget what we're talking about. Chemo brain rocks!
b) I am so ADD now, it's frightening. Squirrel.
c) Menopause BLOWS. Enough said. Okay, maybe not enough. I am 42 years old and have been in menopause for over a year. SUCKS. 
d) It's hard to breathe sometimes...and not because I was trying to exercise. Probably because chemo damaged my heart and radiation damaged my lung.  
e) I can't feel the bottoms of my feet ever. Or my hands sometimes. I no longer have fine motor skills. Opening a jar??? Bwahahaha. That's a good joke.
f) I have a heightened sense of smell. (No kidding, school dance in the gym last week. The minute I stepped out of the library door, all I could smell was sugar, pizza, and sweat. Had to leave school immediately).
g) My tastebuds are shot (which really blows since I can smell everything now).
h) My hair has grown back thicker (yeah), curlier (boo...chemo curl sucks), and with a lot less gray (yeah...although I color it so you wouldn't be able to tell anyway). Doesn't make any sense to me, but there's the truth of it.
i) I'm sure there are many other things which I'm just not remembering right now...because I'm stupid.

When I say, "I hate everyone and everything," I probably mean:
a) I hate everyone and everything.
b) I am so tired.
c) I am sad.
d) I am angry.
e) I do not understand why everyone still cares about stupid, unimportant stuff. (Okay, I really do know, but I get frustrated when forced to confront someone who is taking dumb stuff way too seriously).
f) I'm trying not to say that my PTSD has kicked in and I'm trying to hold it together.

What? 

I'm angry? I'm sad? 

"But why? You're all better now, right?" Here's the thing: PTSD is a bigger bitch than menopause. And I try really hard every day not to let it get the best of me. Or to let you see it. But the reality is, I am an emotional wreck. WRECK. I've cried twice while typing this post and I haven't even gotten to the stuff that's sad. I am at least able to see the panic attacks coming on now, but that doesn't mean they are any fun. Ask the family about the one I had in Hawaii while we were out in the middle of nowhere. I'm sure that the three of them thought someone was going to die. I only have a vague recollection of the event, but it scared me. The best one was trying not to bring the plane down on the way to Vegas. Because my brain was telling me that the panic attack would go away if I opened the plane's emergency exit...while we were somewhere over the Nevada desert. Not kidding. The people sitting next to me were really freaked out.

So, besides PTSD (which, is not just for soldiers, BTW, and which I really need to write about in a post all it's own), what makes me sad and angry?

LOTS!

Ignoring all the "what if the cancer comes back?!" "What if I don't see my kids graduate/get married/grow up?" "What if, what if, what if?" questions that constantly swirl in my head, here are just a few things that I think about... 

I feel guilty about everything my family has had to go through, and the damage that it's done to their mental health. None of us will ever be the same, and whether that's a good thing or not, the trauma wrecked havoc and did it's share of damage. 

I get sad when I think of all the things that I want to do that I could have, and maybe should have, done long before now. Why was I waiting to check those things off the bucket list?

I lost a year and a half of my life. Literally. I don't actually know how old I am anymore. I answered the question wrong the other day when someone asked. Seriously.

Cancer is isolating. Whether that's by force, or mitigating inherent health risks of hanging out with people who carry germs, I barely saw anyone during the entire time of my treatments. And now I'm so used to hanging out in my room, by myself, it's really hard for me to remember to be a member of a family, community, neighborhood...how to be a friend. I struggle with getting outside the shell that cancer created.

Treatments have bankrupted us. Not just emotionally, but financially as well. Actually bankrupted.

I don't know if I am a survivor. The doctors sure don't call me one (I have to wait 5 years for that), but I feel like I should surely get a label for all that I've put up with! Or a special place in Heaven. Or a better dessert than everyone else. But I also get twitchy anytime someone calls me a survivor...like maybe they're jinxing it for me. 

I think I'm a different person. And I desperately didn't want cancer to change me. But the reality is, while cancer did not change me, living through it has definitely made me a different person. And that makes it feel like I've let cancer win. I struggle every day with feeling like I'll always be "that cancer patient" in your eyes. And my own.

I am nesting in reverse. I am getting rid of EVERYTHING. And science major me who took enough psychology classes in college can see why I'm doing it. I know that I'm doing it because I don't want my family to have to sort through all my things if I were to die. And because things don't mean anything to me anymore. But I can't stop.  Just spent the last two weeks giving away ALL of my books. 

I am so mad that there is not a cure for cancer. And that people are still diagnosed with it every day. Research, people, research!!! 

I get so angry when I see that you are not living your dreams. Or you are unhappy. Or you aren't saying, "I love you" to those that matter. Or caring so much about things that don't matter. SERIOUSLY! Life. Is. Too. Short. And I know that unless you've lived through something like I have, you understand the words that I'm saying, but you don't really GET. IT. You think I sound like the teacher on Charlie Brown. But if you aren't happy, then what the hell is the point of being healthy????!!!

So, before I alienate everyone, I'll wind this up with a few simple statements.

Cancer is not for wimps.

At the end of the day, there's no prize for being a workaholic, or the "perfect" wife/mother/family, or having the most stuff. Let it go.

Be happy. And let those around you be happy. Whatever that might look like. 

Eat dessert first.

And I'll be doing a regular "Inspirational Quotes" segment here on the blog. So I think I'll end this letter with the first one...

Amen!

How I Am Now...

Today seemed like a good day to chart my "progress" toward returning to a "normal" life. Now, before you start laughing, yes, I know that "normal" is a relative term and that my life has a new normal now. Every day I deal with my new normal, but I couldn't really find a better word.

So, here's how I feel today, which is:
29 weeks after my last chemo treatment. (Seriously? It's already been that long? It feels like just yesterday. I am still traumatized by the thought of waking up every week to willingly put myself through that. 16 rounds of chemo in 20 weeks is still unfathomable to me...some days I don't know how I survived. Some days, I don't think I did survive).

9 weeks after my last radiation treatment.

2 weeks after my 5th, and hopefully FINAL, surgery. KNOCK. ON. WOOD.

Numb: Lots of different ways to interpret this, and it is possible that I am a little numb to the world, but I actually mean this in the most literal sense. My hands and feet are still numb, a residual effect of the chemo. There are days that are better than others which gives me hope that some day, ten years from now, everything will be back to normal. But then there are days when it is worse and I think, no such luck. But I'm so used to it dealing with it now, that I really don't notice it.

Tired: I can't imagine a day when I'll be back to the way I was before all these treatments started. I definitely have good days and bad days as far as my energy level goes, and maybe that's the most annoying thing...that there isn't rhyme nor reason to why I feel especially tired one day over another. I can be feeling great and then suddenly, WHAM! I've hit the wall and cannot go on. Or I'll wake up at noon one day and not have the energy to get out of bed. I've been known to yell at Keith, "why did you let me sleep that long?!?!" To which he always replies, "you obviously needed the sleep." Well, yes, but I would also like to be a functional human being every day, not a sloth. Oh well, a girl can dream.

Angry and Emotional: I'm not even sure what to call this category, but I'm pretty sure that it all goes back to PTSD, which I'm positive that I have. (After further study, I have learned that 10% of cancer survivors have full-blown PTSD, and 60% of cancer survivors have some form of PTSD. I'll be doing a future blog post linking you to some of my findings, written by people who did a much better job of explaining it). I have panic attacks, anxiety, moments of profound anger, unexplainable emotional outbreaks...I feel like I'm a ticking time bomb. When Keith and I went to Vegas in September, I almost had to have them bring the airplane down somewhere over the Nevada desert as I was having a full-blown panic attack. Yes, I know I need to get help for this...I'm working on it. Just been a little busy. This is my goal for December or the new year, I promise.

Stupid: Chemo brain and I are not friends, but I'm finding ways to hopefully make up for my lack of brain power on many days. I watch the kids compensating for how they have learned to deal with me and I feel bad. Teen boy will yell at little sister for constantly repeating a question, but I know that she's doing it because she thinks she has to. I have also since learned that memory issues are a symptom of PTSD (see above), so there's that too.

Sore: Well, that has to be a given, right? I just had surgery 2 weeks ago. I actually feel much better this week than I did last week. But the doctor says that I still have 2-3 weeks until I can "do" things more exhausting than walking. But Vegas for Thanksgiving is still on, because really, that's all about eating and sitting in the sun, and pretty much nothing was going to stop me. Just don't make me laugh.

Old: I feel like I have the body of someone who is at least 20 years older than me. I hope that some of that goes away over time as my energy level increases. But chemo threw me into menopause, and this most recent surgery will make sure that I stay there, and it's not any fun. Chemo-induced menopause hits you like a ton of bricks and never lets up. And since having my ovaries removed, it's just gotten worse. Okay, so it's not like I didn't think it was going to happen, but I really didn't think it could get worse. HA! I greatly misjudged that one! Oh well, nothing I can do about it now...it's not like they're putting anything back. I do have an appointment with the chemo doc after the holiday and we will discuss if there is any way to manage these MOST ANNOYING symptoms.

Tired: Did I mention this already? I'm sure that it doesn't have anything to do with the horrible insomnia that I have (again, a symptom of PTSD and menopause, so not sure who's at fault here). I would say that it's gotten worse since the surgery, and 3:00-4:00am is my new bedtime, if I'm lucky. Which is awesome when everyone has to get up at 6:15am to get ready for school.

Misc: Every time I do presentations about books to kids or grown-ups, I always have a "Misc" category, so why should this be any different.
My range of motion is still not what it was, and this is completely on me for not continuing with physical therapy. At some point, you just start bleeding money and you're tired of being in yet another doctor's office, so these appointments were a casualty of both. But I did just start up my massage treatments again this week.
My taste buds are probably at 70% of what they were, and I know this will not change. So many things no longer taste good to me, and many things that I didn't like before chemo I love now. Crazy! But survivable.
My hair is growing back but I think my eyelashes are starting to fall out again (which scares me). I'm currently pretending that my eyelashes aren't really thinning (ignorance is bliss). The hair is a weird entity that doesn't feel like mine. I don't mind it short at all, but the color is so strange, and the texture is different (it reminds me of cat fur), and the curls are making me insane. But we have determined that we don't think there is nearly the amount of grey there was, so possibly one perk?!

Ongoing concerns: I continue to take Tamoxifen every day (and likely will for the next 5 years). But I'm going to check on this at next appointment because I'm kinda not a fan. I have my first scan and blood work scheduled for December, and then it just keeps going every few months after that. Will keep you updated. Also, it's very hard to explain what it's like to be living a life where there's a possibility of recurrence around every corner. Where you never truly get a clean bill of health. Where you live in fear of what they may find on the next scan. Where they tell me "if you're alive in five years, then the treatment worked." Awesome! I try to think positive and not worry, but there's always a nagging fear out there...

GRATEFUL: Again, it will never be possible for me to thank every one individually for all that you have done for me and my family. I cannot even put into words the gratitude that I feel...I get emotional just thinking about how lucky I am to be surrounded by friends, family, and a community that cares. Really and truly the only thing that I can do is pay it forward (or return the favor if you ever need it). Stay tuned for my Thanksgiving Day post...

Hopeful: Just this past week, I have started to look to the "future" and things that I want to do. A couple of things that are on my radar right now include forming a team (or two) to participate in the June, 2014 Relay for Life event here in Redmond. I will be doing this and will update you once I register. I'm stumped on a team name, but hope to have one in the next few weeks. If enough of you want to join me, we can have 2 teams...or a kids' team. (They recommend 15-20 people/team). Let me know! Or find a Relay for Life event in your area to participate in! I am also setting my sights on competing in an Athleta Iron Girl triathlon in August, 2014. (It's nowhere near Ironman distances so don't be thinking great things about me just yet). But I've enlisted the help of a friend (and Ironman competitor) who has promised to whip me into shape! And to do the event with me! Anyone else want to join?!

And, lastly, my more immediate goal is to read ALL the back issues of Food Network magazine that I haven't touched since October, 2012. Food has definitely not been my friend this past year, but now, I'm in a place where I want to peruse them! Grateful for these small miracles!

Chemo Brain in Action

Just thought I'd offer further proof that chemo brain is a real thing...and so much fun to deal with. Here are just a few examples from my daily journeys:

(1) At the new surgeon's office, filling out paperwork/forms (because you can obviously never do that enough), I was stumped by one of the questions.
Marital Status     S/M

I was supposed to circle an answer.

I am not kidding when I say that I had to skip the question on the first pass because I didn't even know what marital status was. The second pass didn't really clarify the question for me and I finally had to ask Keith for help. He had a great laugh over this. Good thing that he was there to help my brain along.

(2) Going through the drivethru with the teenage boy on the way to his soccer game. We had hoped to stop for breakfast sandwiches at Starbucks, but they were out, so we were forced through the Wendy's drivethru. I ordered his sandwich, gave the guy a $20, and drove off. While teenage boy is screaming, "What about your change????!" Had no idea what he was talking about or any memory of handing the guy a $20. (Luckily, there was no one behind us in line, so I could do a quick back-up in the lane and collect my $18.50).

(3) A co-worker asked me to order a book for her. She even wrote down the title and gave me her school credit card number. It is on a giant sheet of paper stuck to my desk...I've looked at it every day I've been at work for the past 2 weeks. Yesterday she asked me when I thought the book would arrive. Hmmm....that would require me to have ordered it, right? Whoops!

These are just small samplings of what it's like to be me on a regular basis. This does not include all the sentences I speak where I mix up the words (though this is fun to watch the kids' brains spinning trying to translate what I meant to say without asking me to repeat it). Or the times that I forget the kids' names. Or that I've had my son's paycheck from reffing soccer in my purse for 4 weeks now because I forgot to go to the bank (even though there is a sticky note stuck to the dash for all those weeks that says, "BANK!").

Chemo brain ROCKS...

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!

Here's What's Up

Tired of saying "radiation, radiation, radiation" and repeating on an endless loop, I thought that I would just jot down some notes about what it's been like to be me the past few weeks.

(1) I need MUSIC MONDAY suggestions ASAP! Comment here...early and often...please!

(2) We did the biggest back-to-school power-shop EVER over the weekend. Because I cannot be far away from my favorite radiation machine Monday through Friday, we had to cancel the annual Oregon coast/beach camping/shopping extravaganza. Instead, it became a blitzkrieg event, where we powered through every store possible in the shortest amount of time, barely stopping to eat. While it was exhausting (no, I'm never going to do this again), it was actually really fun. At dinner on Saturday night (at like 9:30pm because we just couldn't stop shopping) the four of us LAUGHED. A LOT. AT EVERYTHING. And I don't even remember most of what was so funny (except I remember some of it had to do with the fact that I'm not sure English is my children's first language. Did teenage boy really ask, what's a verb?). But it just felt good to laugh.

(3) I went in to work on Monday (because I'm dumb...I know). It was just for a couple of hours, and I didn't really do anything but stare and feel overwhelmed by the amount of work to be done before the start of school (somehow my library became a dumping ground over the summer). And how was I rewarded for this? By getting sick. So. Very. Sick. Damn middle school germs that obviously linger FOREVER. I feel like complete crap now. I get it...compromised immunity + school germs = sick. (Of course, I went up there again today. I figured, what the heck, I'm already sick. I know. I told you I was dumb). 

(4) Before I got sick and wanted to kill people because of this awesome sore throat and headache, I was starting to feel fatigued from radiation. I had a good 3 hour nap last Friday. And another one a few days before that. I haven't read a book in 4 days because I can't stay awake.

(5) I hate my hair. Everyone loves it, and I'm not saying that it's horrible. But the color is all wrong and the curls are driving me to drink. When I look in the mirror I do not see myself. I have decided to keep it short for awhile. And wear the Katy Perry wig for school pictures for the rest of my life.

(6) Chemo is the gift that just keeps giving. I am starting to make plans for the fall and eventually returning to work. Every day I think about what I can no longer do and how it will impact me going back to work. I've decided to make this a post all on it's own...stay tuned.

(7) Before I caught the plague, I was able to get out and exercise a little bit. I was doing pretty good and trying to get out every day. Until about a week ago. And then I got tired. And then I got sick. Hoping to pick it back up again by the weekend. However, last 10 pounds still not coming off and the clothes still don't fit. Super frustrating.

(8) Really missed not going ANYWHERE this summer. Radiation puts a crimp in your social calendar, that's for sure. I feel like I deserve a vacation when this is all done!

(9) To end on a positive note, my former student Nolan has reached his fundraising goal and will now be able to walk on the 3Day (here in Seattle in September...just a few weeks from now). His mom Deb, and another friend Julia also reached their goals, so I'm hoping to be able to get out and cheer them on. Who's with me?? Thanks to EVERY ONE OF YOU that donated to Nolan (or anyone else that is participating in the walk). It is terrific to see so many of my friends on his "supporters" roll call! And thanks to all of you that are supporting anyone participating in events that raise money for cancer causes...Obliteride, Relay for Life, etc. And those of you walking/running/riding for a cure. (Check out one of my students who walked this spring in a Relay for Life event...go Abbey!) 

The New and Improved Me

I realized the other day (or maybe a month ago and I immediately forgot again until just the other day) that I had only posted recent pictures pics of the "new me" on my Facebook page.

So, I thought I would post a few here to keep you updated on what I'm looking like.



(1) What my nails look like still if I let them grow out. I'm hoping that you can tell from this picture how the longer they get, the less they are attached. So then I have to cut them short...and then when they grow out the process starts all over again. So much for that career as a hand  model.



(2) The Sharpie drawing all over me for radiation simulation. The blue dashes mark the entire area that is radiated (it goes from sternum to armpit, collar bone to below my left breast). The black dot in the middle of the "cross" that you can see is a permanent tattoo...and there's a matching one in my armpit. Damn. I was really hoping for something much cooler. At least an "X" marks the spot kind of tattoo. That beautiful scar that you can see is my surgery scar...about half of it. And there's a matching one of those in my armpit also. 



(3) The new me, with my awesome pixie haircut. When  your hair initially comes in after chemo it's a combination of straw and cat hair. I'm not sure how else to describe it, but it HAD to come off almost immediately. Thank goodness for friends who are hairstylists! Next stop, maybe some color because this current one is all kinds of NOT ME. I'm thinking purple...or Katy Perry blue.

Radiation Update

Two weeks of radiation are in the books. I thought that I would provide an update on how things are going. 

First, you must know that radiation is the SAME EVERY DAY. Don't expect a bunch of updates here over the next several weeks because it is basically just Lather. Rinse. Repeat. Mind-numbing and boring. If you want to know what radiation is like on a day to day basis, see my previous post here.

For those that forgot, yes...it really is every day, 5 days/week. Two weeks down, 5+ more to go. (Somehow I get a partial extra week and I'm not sure how or why. I guess it's because I'm just an overachiever as we've previously discussed here). Here is what I know and how I feel after the 10th treatment:

Compared to chemo, which had an on-time percentage of ZERO, radiation runs 90% on-time. This is quite cool, and I am quickly getting spoiled. And on-time means ON-TIME! You had better be there and dressed in the super-cool (yes, that's sarcasm) gown 3 minutes before your scheduled appointment. For example, for an 11:00am appointment, I come rolling into the facility at 10:53am, do a quick change performance in the dressing room a la Superman in a phonebooth, and sit in the waiting room awaiting my appointment. Usually, my butt has just grazed the chair when the tech comes and calls my name. Then it's off to the "warning: high doses of radiation in this area" room for treatment. 

The techs are GREAT! There are 3 women that rotate in, and there are always 2 of them with me. They are my new friends. There's also a student (not like teenager student...he's probably in his mid-20s). They asked me on day 3 if I minded if he was a part of the treatments so he could learn. Since he was not required to stick sharp needles into my spine that might paralyze me (something I wouldn't let the intern do when I was giving birth), I said, "why not?!"

Treatment time varies from 12 minutes (the fastest so far) to 29 minutes (the longest time spent splayed out on the table). I've had chauffeurs taking me each day, really just to keep me company. Teenage boy child wants it noted that he's had to put in 2 shifts out of 10, and feels that's as much Angry Birds as he can possibly sit and play. Usually, my wonderful drivers hang out and have a coffee, read a book, check their email, and stare at the beautiful waterfalls (that my insurance company must be paying for, so I'm glad someone gets to enjoy it).

HOWEVER, just when I was getting used to "definitely being out of there" in under 30 minutes, start to finish, I hit "Take Your Grandparent To Radiation" day this week. Again, nothing against the elderly (and I mean those in the 80+ year old category), and I saw A LOT of grandmas and grandpas while I went through chemo, and I feel horrible that all these years on Earth have not earned them a break from dealing with cancer, but everything just seems to S...L...O...W   D...O...W...N when the walker/wheelchair/rolling bed crowd descend. And I'm okay with it, and I did not ask to jump ahead because I could "go quicker" (although I really wanted to). I am happy to just wait and read my book (I still carry one everywhere, just in case). But my 2:00pm appointment that day didn't start until like 2:45pm, so they ruined their on-time percentage.

How do I feel as I'm about to start the 3rd week of treatments?

The fatigue has started to set in. I took a nap after treatment on Monday and Thursday of this past week. Big naps...I think one was 3 hours. 

I'm having trouble breathing (and my husband thinks it's crazy that I haven't brought it up to the doctor yet). Not all the time, but I can definitely feel some shortness of breath, and it comes and goes. Like in the shower on Friday when I thought I was going to die and had to sit down. Am so used to this from chemo though. But yeah, he's right...I probably shouldn't ignore this since my heart and lungs are so close to the treatment area.

I can feel the area they are radiating. And it's not just the 3-4 "spots" that they are targeting. It is the entire area that the doctor originally marked on my chest with a Sharpie. Kind of a funky rectangle from sternum to armpit, collarbone to below my breast on my left side. There are random shooting pains deep down, similar to what happened after each of my surgeries, so I recognized what the nurse was talking about when she was trying to describe what to expect. Yep, been there, done that. 

My skin is starting to look sunburned, especially in my armpit. Terrific. Feels great. You know that feeling when you take a hot shower after getting too much sun at the beach? Yep! That's how I felt starting yesterday. Oh goodie. (FYI, have been warned that this "coloration" could be permanent, and anywhere from red to tan. Or it may not...you just never know). And the best part? It's not just burning the skin that you can see. It's like they are giving 2nd and 3rd degree burns way down deep, through all the tissue. 

Going to the hospital every day SUCKS. Don't you think I've earned my own parking spot at this point?? I sure do!!

And a few things of note that are probably residual chemo effects, because it is the gift that just keeps giving. This week my feet went back to being more numb than normal. Just when I thought we had hit a level I could live with. And my hands HURT...shooting pains in my fingertips, and even less hand strength than usual. And I thought it was impossible to get lower than zero, but I guess not. Joint pain all over, especially in my shoulders. All of these were so bad this week that I think one of the really long naps could be contributed to my hope to sleep off these symptoms (no such luck).

So yes, basically it's just one big party here. I did get out and about a couple of times this week, to a movie with friends, and the Harry Connick Jr. concert last night. Nice to have that fun...hoping there are more good days than bad days moving forward. Fingers crossed!

Speak No Evil

Or, "What Not To Say To a Cancer Patient."

First, before you take offense to this particular post, I want to say that it probably wasn't aimed at you, my dear friends and family. For the most part, everyone has been wonderful to me, and nothing but supportive, and always quick to offer help when I most needed it. And this is not a "rant" against stupidity (although, it unfortunately exists..just wait for my post about the DMV), but rather a way to help all of us be more considerate when talking with cancer patients.

When you are a cancer patient (or probably any person suffering from a long-term illness or life-altering disease), you get asked questions...a lot of questions...all the time. And quite often, they are the same questions over and over and over. This is really because most people are so caring and want to help/understand.

If you are lucky enough to know people that have traveled the cancer journey before you, or with you, or even after you, you tend to bond with these people in a way that I cannot fully explain. Sometimes, they seem to be the only ones to know exactly the right words of encouragement to give you when you feel like crap. So you get together for coffee, or you chat on Facebook, and you feel like you can laugh with these people in a way that others can't quite grasp. And while you're chatting, you discover that you all have the same "pet peeves" when it comes to things that people, well-meaning or not, say to you.

I asked all my "cancer peeps" (yes, that really is how I think about them) for their input on this post. Our roll call includes: Hodgkin's Lymphoma, Testicular, Lung, Thyroid, and 7 Breast Cancers (6, plus me)...so 11 people total. Five of us went to the same high school and are basically all the same graduating class so I wonder if I should do a study of what was in the drinking fountains there and how many of us there really are and whether it's higher or lower than the average. 1 is family, 1 is the mom of a high school friend, and the remaining 4 are friends I have met along the way through school, kids' schools, and sports. One has been "lucky" enough to go through cancer twice, 15 years apart. (UGH! Cannot even imagine...she's my hero). Some are newly diagnosed, some just starting treatment, some just finished treatments, some are one year post-treatments, and a few are lucky enough to have hit their 5 year cancer-free mark.

Here are the questions that I asked: "Do you have one, two, or even ten things that bug(ged) you that people, well-meaning or not, say/said to you? Or things you just got tired of hearing? Whether it was friends, family, acquaintances, or doctors...I'd love your thoughts." (Now, please note, at the time I'm writing this, a couple of people had not yet responded because they are likely enjoying their summer and not waiting around for emails from me. I will update with their responses as needed).

These people were very thoughtful with their responses, and all agreed that for the most part people were supportive and wonderful, as I've already mentioned. Many of us think it's possible we have even been guilty of some of these "no-no's" at one time or another. Several were worried that it might seem like they are nit-picking, but I assured them they were not. I culled the responses and have included our advice to you...in no particular order...here's what bugs us the most...(direct quotes are marked, otherwise I've compiled and paraphrased).

Please do not be one of these people:
"The One Up" 
Every single one of us remarked about this. These are the well-meaning people who want to tell you a story about someone they know who has cancer "much worse" than you do, and how said person is soldiering on. If they can do it, so can you. I'm pretty sure this is designed to "buck up" our spirits. Unfortunately, it has the opposite effect. Here's the thing, we all know someone who has it much worse than we do...we see them EVERY TIME we go in for treatment. (For me, it was the lady next to me, pregnant with twins, who was getting chemo. Yep, my Stage 3 Angry Cancer didn't seem so bad that day). BUT, whether we are in the throws of treatment, or about to start some scary phase of treatments, or even desperately trying to recuperate from the last round of chemo, WE FEEL BAD. And we have a right to feel bad because "it just sucks to be in the middle of it." I'm sorry that your neighbor's mother-in-law/friend from high school/second cousin, twice removed has it worse, but I only have enough energy to care about me, and all your comments do are make me feel bad about myself for being a wuss.

"The One Up, part 2"
My cancer peeps are "young" in the grand scheme of things. Hearing about how your grandma had breast cancer when she was in her 80's does nothing for us. We have young families, jobs, and would like to think that we're pretty active go-getters. "I know they were trying to be well-meaning but their mothers were 70+ when they were diagnosed, not 42! Come on, I have young kids and a whole life." Not to mention the fact that cancer medicine has advanced GREATLY in the last few decades, so these experiences, while sad, are completely irrelevant to our situation.

"Compare and Contrast"
Please do not compare your health "crises" and experiences with mine. Now, I'm the first to raise my hand and say that I'm sure I do this with my cancer peeps (but we're allowed, because we try and garner info from each other about what the unknown is like), and I apologize to anyone I've ever done this to in the past, and know I'm working really hard NOT to do this ever again. But please do not talk about your benign lump or your hazy mammogram results or how it was a scary couple of days for you thinking you might have cancer, but thank God you don't. Now, if I'm joking about my hideous MRI, and you've had one also, please, feel free to commiserate about that. But your experiences are not mine. Which leads me to...

"I Know How You Feel"
NO YOU DON'T. Even if you've had the same drugs, and the same doctors, and the same diagnosis. You have no idea how I feel. Every time I hear this from someone (usually a random stranger out in the community, or someone over the phone I have to deal with when "discussing" insurance...or the DMV), I want to lose it. If you take nothing else to heart from this post, please do not ever say these words again.

"God's Plan"
I am the first to admit that I'm not the most active church-goer out there, but I definitely believe in God, and pray for strength a lot. However, I'd like to think that he is not a mean and vindictive god who would want me to feel this terrible. Telling me my cancer is "God's plan for me and is my cross to bear" just doesn't work for me because I disagree. Perhaps, years from now, it might be appropriate to have a discussion about how having cancer changed my life/life plan, but not now. Not while I'm right in the middle of it. All this will do is make someone stop believing in God, or start hating God.

"God's Plan, part 2"
Or, "But you're such a good person." Again, cancer sucks. Random, stupid, and angry are all words that I use to describe it. Believe me, I've given quite a bit of thought to "wow! You'd have thought I would have some good karma points stored up." This is okay for me to think...but not at all helpful for you to say.

"Be Positive"
This is kind of "God's Plan, part 3" in my opinion. Yes, I think that attitude is a key component, and my cancer peeps completely agree. However, telling someone "attitude is everything" or "if you just have a positive attitude, it will be okay" is JUST NOT TRUE. I've been told I have a pretty remarkable attitude considering what I've been through, and they keep finding cancer every time they do a surgery or a scan. And then I get pissed and hate everyone. And then I feel guilty for not having a positive attitude. Lather. Rinse. Repeat. Attitude helps, but a positive attitude is not going to cure you. It is okay to feel bad and a cancer patient needs that permission not to be happy all the time. 

"How Are You Feeling?"
Especially when it includes that look of pity in your eyes. This was one of my personal pet peeves and I'm glad that I wasn't the only one. I felt I was jinxing something if I answered, "not too bad." Wow, if that isn't asking the chemo gods to rain holy hell down on you, I don't know what is?! And if the reverse is true and I'm not doing well, you don't really want to know all the gory details, so I just wouldn't tell you. The sentiment is nice, but this is just not the right question (see below for what to ask instead).

"You Look Good"
The hell I do. What you really mean (ie: what you're amazed about) is that I don't look like a Holocaust survivor, which is how you think a cancer patient should look thanks to movies/TV/your grandma's cancer experience from the 1970s. Even if, God forbid, we really do look better than we've ever looked in our lifetime, we feel LIKE CRAP. We don't recognize the person we see in the mirror. Tell me I look good bald, that eyelashes are overrated, that my coloring seems good today...find something meaningful and specific...and maybe even funny. Anything other than something that sounds canned, and is really just a well-meaning lie. In this same category are "someone as young and healthy as you" which I hear from my doctors all the time. I HAVE CANCER...I am not healthy. Pick different words.

"The Health Nut"
This one was a hot button for us. We've all run into the person who says "I eat this or don't eat that" or "how they never drink milk because of hormones and all the other things they are careful not to eat, blah, blah, blah."  As one friend put it so eloquently, "Helpful? No. Interesting? Hardly. Even if it were, it's a bit late don't you think?" Another said, "that's great for them but 1) I have already been DIAGNOSED with cancer and don't need any guilt on health habits and 2) HELLO, I am triple negative - hormones aren't a factor in my type of breast cancer.  *SIGH*" 

"The Cures"
Again, I fully believe that curing my cancer is a process and should involve a lot of different elements like traditional and non-traditional therapies. But why must we feel the need to perpetuate the chain letter email that if we just eat 12 pounds of bananas every 3rd Thursday we will be cured, and here's the true-life case of the one person, 300 years ago, that it happened to. Please don't get me started on what I think of these "cures" (magic potions) and whether they actually work. One of my peeps shared how a well-meaning person sent an article about "willing away the cancer through positive body-talk." Now, if you had my EXACT type of diagnosis, and you thumbed your nose at Western medicine and ate those bananas and you were actually cured, then sure, let's talk. I'm open to incorporating bananas into my diet. But I'm going to make it a PART of my treatments, and not rely solely on them...or any type of treatment for that matter. If you really want to find a way to help me get better, offer me the name of a personal friend/family member/your own doctor that works with cancer patients so that I can have another name to add to my arsenal.

The Dumb Questions:
I kid you not, I'm not making any of these up.

"How did you catch it?" Repeatedly asked. My friend that survived testicular cancer has the best response: "Seriously? Toilet seats. Always use the ass gasket, otherwise you'll end up with testicular cancer. Tell your friends." Guess what people, you don't "catch" cancer. Just saying...

"Are you a smoker?" Top of the list for lung cancer patients. First, I have to say, think about what you are going to say when you hear the answer to this question, regardless of what it might be. If he/she says "no" are you going to say, "sucks to be you"? If they say, "yes" are you actually going to say "then I guess you should have expected it?" Honestly...this kind of falls into the "How did you catch it?" question above.

"What are your chances of survival/recovery?" "What does this mean for your kids?" "Are your kids going to get it?" Most cancer patients don't want to talk about statistics and percentages as it pertains to whether they are going to recover or not. Honestly, the "odds" of my 5 year recovery is pretty crappy all things considered (somewhere in the low 60% range), but I'd prefer not to think about that as it doesn't do me any good, thanks for asking. And I'd prefer not to have a long conversation about what this means for my kids, or their genetic makeup, because it's scary enough thinking about my own cancer. And I was trying not to think about my kids having cancer, but thanks for putting that out there because I needed one more thing to stress about.

An extreme example of compare and contrast: "I was going to get my hair cut during my recovery period for reconstruction. The well meaning hair stylist compared my reconstruction (from a mastectomy) to her 20-something friend who had a "boob job" because she was tired of her "A" cup." To this I must just say, use your brain people...use your brain...

Now that I've probably offended every last one of you, let me reiterate, that is NOT MY INTENT. You are all good people! You say and do the right things. My (our) hope is just to provide you with an insight into what your questions mean to us. 

So, what can you say? Or what should you say?

"I am so sorry you are going through this."
"I am here for you." (But don't say it if you really aren't prepared to be there. Or be very specific with what support you are able to provide. For example, "I can drive your kid(s) to soccer practice" or "I can run to the grocery story for you" or "Do you need a ride to the doctor?").
"Whatever you need..." (Again, see above. If you're really willing to clean my house, offer it up. If you're happy to have my kids spend the night, please take them. If you'd like to organize meals from friends and neighbors, that'd be lovely).
"What do you need?"
"How is your day going?"
"Do you want to talk about it? Or not?" (I have friends that are very good at NOT talking about cancer at all when we are together...it's a great opportunity just to be a normal person for awhile. This is something we ALL want).
"I am at the store, do you need anything?"
"Is there anything I can do to help?"

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. 

How I Feel Today

It has been 9 weeks plus 1 day since my last round of chemo (that's 64 days for those of us with math skills). Since that dose on 4/29, I've had scans, scans, and more scans, a bazillion doctors appointments, and another round of surgeries (three surgeries on one day, for which I'm sure I will be billed triple). And I have tried to rest and recuperate in anticipation of radiation starting on 7/15. Oh, and I've picked a fight with the DMV.

This is the part of cancer treatments that gets a little sketchy. Your hair starts growing back, you get a little energy, and people start to forget you have cancer. Or they expect you to be better. Or your school district can't imagine why you can't possibly be at work and therefore needs yet another doctor's note proving you are sick. (Let me repeat: IMMUNE SYSTEM COMPROMISED + MIDDLE SCHOOL KIDS = NOT HEALTHY). You don't look like a cancer patient, so people don't realize that you still feel bad. (This is not a rant against my family and friends, by the way...all of you have been amazing. But the random person looking at me on the street probably doesn't realize what I'm going through simply by looking at me).

Since I think I did a "here's how I feel 2 weeks after chemo" post, and maybe another one at one month after, I thought I would continue the tradition with a How I Feel Today, a little over 2 months post-chemo. I hope that it helps anyone going through the process (or their loved ones) understand that how you feel doesn't magically go back to "normal" the day after chemo. And unfortunately, some of these items listed below are permanent or could be YEARS before they go back to the way they were.

In no particular order:

(1) I have dropped 8 of the 18 or so pounds that I gained. I feel like the last 10 will NEVER go away and had to resort to accepting my mom's offer to buy me some summer clothes. Ugh. That's a size I've never seen before...

(2) My taste buds have sort of returned. I almost hate to type this as I'm sure that I am tempting fate, but I'm pretty sure that they are 2/3 to 3/4 back to what they were. Some things still taste funky, and I can eat much spicier food than I used to be able to tolerate. I actually think that this is the new normal for my taste buds and that there is no getting better from here. But having been to the dark side, I will not be complaining about this. THANK YOU to everyone that has taken me out to eat these past months and said, "what would YOU like to eat?" 

(3) My feet are still numb. Not 24/7, but enough of the day to be weird. But again, I'm so used to it now that I don't actually notice it except at night when I'm not walking around and they are tingling. And I think my one shoulder blade is actually still numb in places. But I told the doc it was better so that'll just be our little secret. (And I typed "is what" instead of "it was" on the first go-round here...see #12).

(4) My temperature regulation is CRAP! Chemo-induced menopause still in effect here. I really feel like this one might be permanent also. Some days it is SO HORRIBLE. I can be such a sweaty mess at times, and no, it's not because it's been hot here or after I've been doing something active. I just randomly start dripping from head to toe while watching TV, shopping in a store, standing and talking to people. Super fun!

(5) I am holding my fingernails on with a wing and a prayer...I feel a little like McGyver. I know that I've said for WEEKS that they are days away from falling off, but I really do mean it. So far, I haven't lost any, KNOCK ON WOOD. I do have to keep cutting them short and gluing them together and I swear I am one snag away from losing 3 of them at once, but I still have all ten. They are UGLY though...all black and brown and detached from the skin in places.

(6) My foot is feeling better, but I still have to walk around in cushy shoes and wear band-aids. Just when I think I'm better, I try to go up the stairs or stand for a period of time without the shoes and I realize that it hurts. (Totally not related to chemo, but thought I'd mention it).

(7) I still have bruises from the latest surgery, especially where the port was. Beautiful greenish-yellow bruises. 

(8) I have no feeling in the skin for about an inch all around the 3 inch scar across my chest. I don't think I ever will either. Four surgeries pretty much killed all the nerves there is my guess. And the scars are angry looking. Not infection angry, but it looks like I need to come up with a good story to accompany them. One friend sent me a card that suggested I say I fell in the fountains at the Bellagio...sounds perfect! 

(9) The area in my breast/chest that has been operated on so many times is, quite understandably, missing quite a bit of tissue. Now, you'd have to stare at it pretty hard to really notice (because I'm a master of dressing and didn't really have any boobs to start with), but in this warm weather when we've all been wearing tank tops you can really see it. It's about the size of a little kid's jumbo sized crayon and runs perpendicular to the scar. Running my hand over the area (which I have taken to calling the divot) to put lotion on the scar kind of freaks me out. 

(10) My hair is growing back. The hair on my head is really a horrible color. I'm thinking it's going to be dyed some cool color in the very near future as I really can't look at it anymore. My eyebrows are coming in a different color from my hair which is awesome (NOT!). And I'm a little grumpy that I have to start shaving my legs again. Especially because I don't have eyelashes yet. Seriously?? Can my system not figure this all out please?!

(11) My short term memory BLOWS. Please don't tell me it's because I'm getting older and that it happens to everyone. I don't really care. I think I might actually qualify for a study/treatment at the UW for this. If only I could remember where I put the information about how to contact the program. I wish I was kidding!

(12) I have developed some sort of weird stroke-like symptom where I'm saying words in my head, but they come out of my mouth all garbled. It doesn't happen all the time, and so far no one has pointed this out while it's happening, which means either my family and friends are really polite and ignoring this OR it's only happening in my head and I'm the only one that can hear this. I'm kind of scared that it's the latter.

(13) I suffer from shortness of breath a lot. All this chemo damaged my heart. 

(14) I find out in 2 weeks if I'm healthy enough to start Tamoxifen. This will be a pill taken every day forever (or 5 years...same thing) and is something I get to do because my cancer was estrogen positive. Last month when I went in for evaluation for it, I was not deemed fit to handle it. Probably because I was just coming out of my 10 days of PAIN and I wanted to kill everyone.

(15) I CANNOT remember to take my vitamins every day (see #11). I've tried everything...setting a reminder in my phone...moving where the vitamins are kept...NOTHING works. And then when I do remember to take them, I can't remember if I've already taken them for the day (again, see #11). I really do need to break down and get one of those old people weekly pill containers.

(16) I did not have any allergies this year. This was kind of a perk. Granted, it's because my immune system is still shot to hell, but if there are small mercies in this whole process, then I'll take this one.

(17) Things I probably should ask about at my next appointment: Should I still be staying out of the sun? (I think yes, but I'd like to hear no). Is it okay to drink that birthday mojito or is my liver still on overload from all the poisoning the chemo did? When is it okay to go to the dentist again? (Well, I really don't want to ask that one because I'm okay with not going to the dentist, but I probably shouldn't avoid it any longer than I have to).

(18) Being TIRED for no reason at all, at random points in the day, and without warning goes without saying. I cannot imagine a time when I will ever be able to go back to work full-time again.

(19) So very thirsty...all the time...

(20) I have ZERO hand strength. The biggest inconvenience is that I cannot open anything...like bottles of water/tea. In fact, as Keith is getting ready to leave for 3 weeks with the kids, I told him to open all the bottles before he leaves or I might die of dehydration!

I have good days and bad days still. I've said this quite a bit, but yucky is my new normal. It's amazing how crappy you can get used to feeling. I hope that some day I won't feel like I'm a 60 year old...at least until I really am a 60 year old.

Pain, Pain, and More Pain

So, you probably thought that you were keeping up with the blog. 

And now you feel like it's been awhile without any news and you're thinking maybe you weren't on top of it after all and must have missed some posts.

No, you haven't. It has been more than a few days since I posted any updates. Here's why:

(1) Reading like a crazy woman because it is about to be Summer Reading season and I MUST get my list done!

(2) Getting everything organized for the last week of Pantry Packs for the school year...HALLELUJAH!

(3) I have been in CONSTANT pain. And let me clarify what this means. Today (Weds. 6/5) is the first day in 10 DAYS where I haven't felt like I wanted to die. For some reason, I woke up the Saturday of Memorial Day weekend in pain from head to toe. Not just a general achy-ness, but total body pain. Of the stabbing/shooting pain variety. 

After 4 days, Keith was calling the doctor because this clearly cannot be normal. I do not look right when I move (if I can move), and there are times when I'm brought to tears. Around day 5, I am finally able to put into words what is going on: you know those spikes that some people wear on their shoes to aerate the lawn? It felt like a 400 pound man was wearing those and walking all over my body, ALL DAY LONG. 

3 Tylenol and 2 Ibuprofin every 4 hours was not making a dent in the pain. And I refused to take the good drugs (Oxy) because that's not really a solution in my opinion. (Though one friend suggested taking enough Oxy to put myself in a coma for 4 days and then maybe when I woke up the pain would be gone. By day 7, I was actually considering this, if only I'd been able to get the dosage correct).

What's really special about this entire cancer/chemo/treatment process is that feeling bad is the new normal. If you talk to anyone that I interacted with last week, I appeared to be okay. At least, I was upright and functional most of the time. It's sad what you get used to experiencing.

But today, KNOCK ON WOOD, I haven't experienced the stabbing me with steak knives pain, so I'm hoping I'm in the clear from whatever the hell this was. Doctor has no real answers except that everyone experiences chemo differently, and it is not unusual to have delayed side effects. Great! Any more surprises up your sleeve?

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. 

Chemo is Over, Why Don't I Feel Better?

Call me crazy, but I actually thought that a week after chemo ended I would be on the road to feeling better. Clearly that was naive thinking. And probably has something to do with the fact that they conveniently don't tell you many of these things up front. It's not that they're lying to you exactly, but I guess they don't want to overwhelm you with small details like it could take MONTHS and maybe YEARS to start feeling like normal again. Oh, they tell me this now with a smile on their face that says, "you poor sweet girl, thinking this would all go away," but I hadn't considered that two weeks after chemo was over I'd still feel like crap. UGH!

Because I'd love for others not to be surprised by this, here is how I currently feel (or at least, what annoys me the most):

(1) I am pretty sure that I have aged TWENTY YEARS in these past 20 weeks. No joke, I feel like an old lady. Watch me start walking after sitting/standing for a few minutes and you will believe me.

(2) I am tired. All. The. Time.

(3) I am up 13-18 pounds from my pre-chemo weight. It depends on which weight you're comparing to...the first day of chemo weight or the summer weight before all this started. Either way...SUCKS! I have one pair of jeans and of course some great sweaters (which don't work so well with this unusual heat wave we've been having) that fit. Oh, and my pajama pants. But that's it. Keith has offered to loan me some of his soccer referee shorts...classic. 

(4) I think part of this 13-18 pounds is water weight/edema. Dear God, my skin is tight everywhere: toes...arms...of course, legs. Ick. And this is normal. And no one is concerned. (Well, I am, and I'm starting to do something about it...shhh!) There is only about 20 minutes when I first wake up in the morning where I don't feel stiff and sore because of this. And do you know what they say to do to help with this? Don't stand for long periods of time. Sit with your feet elevated. Walk. Hmmm, call me crazy, but doesn't walking require standing for a period of time? 

(5) My hair is growing back and I'm now a blonde. This is not bad, just weird!

(6) I will probably die of a heart attack before the cancer kills me. Okay, that's a little doom and gloom, but is a reality. The specific chemo I had damages your heart and you can only have so much of it in your lifetime. I've already hit my maximum dose. And when I walk up the stairs or lift boxes of Pantry Packs I am sure that I am having that heart attack. 

(7) Chemo brain + me = stupid. Enough said.

(8) I can't remember what I was just going to type here. See #7.

(9) Oh yes, that's right, I was going to mention that I probably have half of my taste buds back. Which is GREATLY improved over having NONE, so I will not be complaining about this. I just had my first mocha since before Thanksgiving. Miracle. We ate at Dick's over the weekend and I could taste that cheap tarter sauce that you can smother your french fries in...and the french fries. (If you comment here about eating healthy, you will no longer be my friend).

(10) The neuropathy is getting better. I can feel my fingers most of the time (they do go numb intermittently still). My face is rarely numb, and I think that my shoulders are back to normal. So, only walking around on numb feet is still weird.

(11) I have NO temperature regulation. Can you say chemo-induced menopause? Oh yeah, this is a winner. And might be permanent. Because of my "age" there's no way to know for sure. Oh goodie.

(12) Pain, pain, and more pain. Yep, it's pretty constant. Not a sharp, shooting, someone stabbing me with an ice pick pain. But kind of a consistent, dull roar type of pain. All over. More fun.

(13) Will there ever be a day when I'm not DYING of thirst? Today, I was watching a tennis match at school. I had 2 bottles of water, 1 bottle of green tea, and 1 bottle of some weird flavored water. In 2 1/2 hours. Because I was sure I was going to die if I didn't. I've been typing this post next to an empty glass of water thinking my husband will be dead if he doesn't refill it soon.

(14) I've learned what "hitting the wall" really means. Because I've hit it. And when you use it in sports to discuss you're performance, you are not using it correctly. Because hitting a wall actually means HITTING. A. WALL. And not being able to go one baby step farther. I've done it a few times these past few weeks. I walked down the street to the neighbors' and thought I'd have to spend the night. I carried a cooler filled with water bottles across a soccer field and basically died in the stands. If only I was kidding.

(15) I'm TIRED of being a patient. And I'm starting to be a bad one. And I don't care.

That's all I can think of right now. Jealous, right? Fingers crossed that these get better some day...