Monday, December 31, 2012

The Les Mis Look

My head has been tingling all weekend...and as much as I'm trying to deny it, I know what this means.

I've been warned that Day 18 is the day when your hair starts falling out...and that is today. Happy New Year to me...ha!

Sure enough, if you run a hand through my hair, you will come away with a handful of it. Great.

Taking a shower today pretty much convinces me that this is the end of my hair. HANDFULS of wispy strands. And when I dry it, the towel is COVERED in it. No more denial. And I wish I could say that I handled this well, but I didn't. A good cry was had in the shower. Which is pretty ridiculous because I HATE my hair, always have. Seriously. It's thin, gray, sort of curly, and just will not ever do what I want it to do. So why am I so sad about this?

After my brief sob-fest, I make Keith come upstairs and cut my hair. No, not completely bald (because it's WINTER and COLD and I'm trying to hold onto some hair as long as possible), but SHORT. Like Anne Hathaway in Les Mis short. And the cutting process actually looked a little like the scene from the movie trailer, only with clippers. It was quite the funny experience. And I promise, I will be paying him back the favor...I think it's time for the family to go bald! Who's with me?

Katy Perry wig will be making an appearance by week's end, I'm sure. Stay tuned!

Sunday, December 30, 2012

A Different Truck

I think the truck this time only ran over me once.

Don't get me wrong, I still hurt. In fact, I have spent the weekend in the dark because my head hurts so bad. Just when I thought I'd have all this time to read...ha! Everything is blurry. And my head is throbbing and tingly all over (which I actually think means that my hair will be falling out soon...grrrr).

But I do feel slightly better than last time, and as much as it doesn't make sense to me, I'm going to credit the Claritin. It's the only thing that I've done differently, and it seems to have made the collision with the truck easier to manage. And I'm wondering if I can take more than the recommended dosage because it would be nice to feel even that much better!

Any other differences this time? Smells didn't bother me as much, but only certain foods sounded good. I didn't touch a Saltine this time because the thought of them made me gag. As pathetic as it is, boring canned chicken noodle soup was really where it's at. We tried two other fancy deli/store versions and they were just "spicy" enough that I couldn't stand the taste. Apparently, my taste buds are under attack. Foods that I normally like, I don't. Foods that used to sound good, don't. We bought CASES of flavored fizzy water from Costco right before chemo started because I figured these would be a good substitute for the soda I've been known to mainline. I really like all the flavors...or at least I did. They're still sitting in the fridge because now they taste like Alka-Seltzer to me. 

Back to sitting in the dark...the computer is just bright enough to hurt my head...

Friday, December 28, 2012

Chemo, Round 2

Round 2 looked suspiciously like round 1, so I won't bore you with the details. The biggest question? Did they lose my chart this time? Answer, nope! But they did apologize over and over for it, so at least they still feel slightly bad. However, the process did seem to take just as long from start to finish as last time without losing my chart, so it appears that even though they say it's about 2 1/2 hours, it's really going to be more like 4 1/2 to 5 hours each time. Good thing I always bring back up books!

I didn't need the noise-canceling headphones this time because crazy conspiracy theory couple weren't there. Actually, there weren't too many people there this time so it seemed a lot more peaceful. (Okay, there was this couple next to me...she was pregnant with twins, due next week, and getting chemo? I really want to know that story, because suddenly I don't feel quite so glum about me).

My favorite pharmacist gal brought an intern by to say hi. He's a student at WSU and looking into pharmacy or medicine as a career path. Oh, and I think he was 12. Or else, I'm old...but I really refuse to believe that, so I'm going with that he must be a Doogie Howser genius. I also gave pharmacy gal crap for not warning me that my teeth hurting would be a side effect. She warns me about red pee, but can't mention tooth pain? Turns out, she'd never heard of it. Again, I am clearly a pretty cool case study. (She did go back to her office and look it up, and could only find a random mention of it by someone in Jerusalem, so I guess there's two of us).

Felt a little queasy Thursday night, which should NOT have been the case, so I was worried. Headed it off at the pass with some great meds though. Whew! My insurance company's money is well-spent on these meds. Of course, that seems to be the only thing they are paying for, but that's a post for another day.

Friday morning was shot (Neulasta) morning. Easiest part of the process, but also been known to cause the most pain. Bone pain hurts. Don't get me wrong, I'm super excited my bone marrow is trying to pump out white blood cells, but does it have to hurt? Chemo doc says to try Claritin, since people have mentioned that it works. Well, it either works for you or it doesn't, but I guess it can't hurt to try. So I have...just swallowed the pill. Will let you know how I feel in the morning. But the scientist in me still wonders, how did this remedy come to be? Who decided to try this? Seems odd.

AJ came with me this morning because she wanted to see this happening place where mom has been spending so much time. She got the tour, met the people, and I hope got a sense of what it looks like. She was pretty impressed by the fridge stocked with water, juices, and snacks.

Had a great friend come by the house and overhaul/organize my daughter's craft (crap) room today. Bonus points to her for having to do this with AJ "helping." SO appreciate this gift of her time because it was something that needed to be done, but I just didn't have the energy for. And it looks amazing.

Then grandma came and kidnapped the girl child so that she will be gone for the weekend when I'll feel the worst. Yeah! I might just get an uninterrupted nap!

And I have to say that tonight, I'm feeling pretty good. Better than last time. And I'm scared to say that out loud because I'm sure that it's jinxing me for the weekend, so KNOCKING ON WOOD! But, if you don't hear from me until Monday or Tuesday, it's because I got hit by a truck...again...

Thursday, December 27, 2012

Holiday Greetings!

For those of you that haven't been the recipient of a "Yusko Christmas Letter," please know that they are not your typical, "my child is brilliant at everything and we are the most amazing family ever" kind of letter. As you can probably tell from this blog, I tend to tell it how it really is. Our letters are usually some sort of "Day in the Life," "How We Resemble our Favorite TV Show," or a "Top 10" type of letter. We kind of have a following and I've been writing them since Alex was 4 or 5, so I couldn't stop the streak now. Alas, I just couldn't muster the energy to print and send them however, so it became an e-letter this year. And I thought I would share our holiday greetings with all of you...

For this year’s letter, I had contemplated cribbing bits and pieces from past letters to formulate an all-time Top 10. Instead, I decided to offer you: 

The Top 10 Ways Your Family Will Support You When You Are Sick…

In no particular order,
(1) Let you take naps: Ha! I wish! Please keep in mind that I was always a proponent of “never wake a sleeping child.” ALWAYS! You would think a mother would get some good karma for that but you would be wrong. Naps have become a very dear friend to me. However, one of my children who shall not be named (AJ) doesn’t seem to understand this concept and seems to wake me up just as I’ve nodded off…every time…to ask me very important questions like, “Are you sleeping?”
(2) Chauffeur you everywhere: Dear God, the teenage boy can drive (albeit with permit in hand). If you’re not scared yet, you should be. Some days I am, especially when the rules about right-of-way seem to have escaped his memory. However, this fall it has been nice to have an eager chauffeur. Though that rule I made years ago about the driver picking the radio station is coming back to haunt me. BIG TIME! A mom should not have to be tortured by Eminem.
(3) Love the chance to be healthy with you: Tis the season of mandatory flu shots (doctor’s orders), hand washing, vitamins, and vats and vats of hand sanitizer. All I can say is that you’d have thought we were forcibly poisoning the kids by asking them to follow these guidelines. It’s not like I’m asking them to drink seaweed smoothies every morning. And I’m still trying to decide which of my family members was the biggest wimp in the flu shot line.
(4) Offer to shave their head when you go bald: Yeah, only my husband jumped on board this train, and this is probably because it wouldn’t be that much different than his current hairstyle. AJ thinks it’d be a good idea, but I won’t let her…because I don’t want to hear about it, every day, in detail, for the next 3 years. And I believe Alex’s exact words were “Hell, no.”
(5) Approve of your choice of head coverings:  Yes, I will be bald (see above). And if I’m gonna wear a wig, I really want it to scream “wig.” In Vegas, I bought a BLUE wig (as in Katy Perry blue), and am currently looking for wigs in green, purple, and maybe even black. Some of my family (a certain teenage boy who shall not be named) is concerned that I’m not getting “normal” hair and how could they possibly be expected to be seen in public with Katy Perry all the time.
(6) Be at your beck and call: Sure…begrudgingly. When friends and neighbors brought over pumpkins after my second surgery (coinciding with Halloween) in a show of support, Alex’s first reaction was “Who has to clean those up?” On the same night, AJ took a 3.5 second break from trick-or-treating to say “Hi and I have 7 pounds of candy.” She didn’t ask how I was and I wasn’t allowed to hug her, because it might ruin her zombie vampire makeup. Some things are much more important, you know. (I do have to admit that everyone has actually redeemed themselves since chemo started and are taking very good care of me. And they let me play the “well, when you get sliced opened 3 times and purposely poisoned, then you can take naps, too” card).
(7) Clean their room when you ask them to: Hilarious! I’m not sure why I expected this to be any different than normal, but I really thought that some of these people could pull it together. Alex currently has 3 loads of clean and 1 load of dirty laundry on his bedroom floor…not sure how he tells which is which, because I sure can’t tell the difference. And there are probably no less than 372 empty pop cans stashed around the house because of him. And DO NOT get me started on the special snowflake we call AJ. Who is actually a hoarder in disguise. Who thinks her room on any given day is “cleanish,” begging the question as to what she thinks the definition of clean actually is since it obviously has nothing to do with seeing the floor of her bedroom.
(8) Want to spend time with you: Please don’t think that the Yuskos have become all lovey-dovey, hugging and holding hands all the time. That just wouldn’t be our style. But I kind of thought some of these people would willingly spend some time with their dear, sweet mom. Nope, no such luck. When we wanted to turn the latest 007 flick into “family movie day” (okay, sans young girl child who was off with grandma), you’d have thought we were torturing the teenager (okay, so maybe we were). And although he sat in the row behind us, he did acknowledge me via text several times (as we joked about the senior citizen: us ratio at the movie…189:3). Asking him to take me to Les Miserables on Christmas day though yielded a slightly less enthusiastic response. “You mean that French musical? I’d rather poke my eyes out with a rusty spoon.”
(9) Be nice to each other: Nope, sibling bickering alive and well in the Yusko household…glad to know that will never change. AJ is a master at pushing the buttons of the teenage boy. Her singing while he is driving is a special kind of torture that actually makes me laugh (and is good practice for dealing with distractions, so I’m a bad mom and rarely tell her to stop). Somehow, the song is never quite as cool after your 10 year old sister knows all the words. And Alex, for all his good big brother qualities, would never admit to such a role in public. When asked to take his sister to the Nutcracker (instead of taking his mom to the movies, see above), I think he decided French movies that break out into song might not be so bad.
(10) Regale you with stories: AJ is a master at describing her day to you IN DETAIL. Lots of details. Lots and lots…I’m sure that she has a minimum spoken word count she must reach each day, and this number is somewhere in the high 5-digits. Remember, this is the child that wakes you up to ask if you’re sleeping. But Alex is the master! And his burgeoning sarcastic wit makes his momma proud. (A sense of humor after my own heart). Typically these stories are told to stall for a later bedtime or to avoid brushing his teeth (a talent quickly being learned by the little sister). Some of my favorites this year were about the UFOs following him while walking the dog, how watching little girls’ volleyball games are worse than prison, and the man-eating spiders that attacked him while walking home from the bus. However, the ones about his friends’ driving exploits are ones he should learn to keep to himself. At least if he ever expects to leave the house with them.

In the spirit of our adopted Christmas locale, which I miss greatly on this cold, rainy night, 
Mele Kalikimaka! And a healthy 2013 to everyone! 
Love, 
Shauna, Keith, Alex & AJ


Wednesday, December 26, 2012

Christmas Dinner? What's that?

Okay, so perhaps the holidays weren't quite what I had planned. Cold...gray...rainy...ick! Yeah, this is why we always go to Hawaii (or somewhere else warm and sunny). AJ doesn't even remember a Christmas spent at home, it's been that long. I really miss sitting on a beach, reading a book, listening to the ocean! Granted, it usually comes with arguments about who's running back to the room for drink refills or to make lunch, but nothing too life threatening. Yes, still bitter, but trying to make the best of it.

Was feeling pretty good this weekend, as was expected, so it was a baking filled weekend. Actually, my daughter did the baking, my job was simply to find her recipes to test. She was a busy beaver: hot chocolate cupcakes (which everyone who ate one is sure she can market), reindeer cupcakes, and some root beer float fudge. Luckily, we were sharing much of this with friends and neighbors because we also had baked goods being dropped off at the house. 

Christmas Eve we received a dinner invitation to spend the evening with some friends. Yummy food, totally relaxing, and I actually managed to stay up past 10pm without a nap during the day. Might be the first day in a long time that I did not have a nap.

Christmas Day was spent much different than the usual day on the beach. Luckily, we kept the girl child up late enough that she did not get up at the crack of dawn, so everyone got to sleep in just a little. We went to spend the afternoon with family from far and wide, reminding me of the Thanksgivings of my childhood. Good to see everyone, especially my grandpa. Had to be a quick afternoon though so that we could come back to my parents' for Christmas dinner and Santa presents before I passed out. 

No luck. I fell asleep as soon as we got back to my parents (keep in mind, these 2 locations were about an hour apart, so we'd been gone for most of the day) and missed Christmas dinner. Thankfully, no one was surprised by this and actually let me sleep. I don't even know how long I was out for the count. But my daughter made sure to make enough noise for present opening that I did wake up.

Overall a fun holiday. Relaxing, obviously since there were naps involved. Thankful for everyone that made it fun. And thankful that everyone was understanding about: no grownup got a present from us this year. And if it couldn't be purchased from Amazon and/or a gift card, kids in the family weren't getting it either. The annual calendar? Nope...it would've required several things: actual pictures to put in it (haven't been a happy picture taking family these past few months), and a trip to Costco to pick them up (which required too much energy). The annual Christmas letter, which many have come to know and love? I still wrote it...but just couldn't print/fold/stamp/address. So every received either via email or a Facebook post. Actually, I'm posting it on this blog tomorrow, so everyone can read it!

Life doesn't always take you where you want to go, but the journey isn't always so bad...

Friday, December 21, 2012

My Week of Fun

Had my follow up appointment yesterday...yippee, more pokes with a sharp stick!

This happens on day 8 of each cycle where they test my blood to see where my platelet, red blood cell, and white blood cell counts are at. The good news is that platelets and red blood cells seem to be holding on. Bad news, but really not surprising, is that the white blood cells were down. But nothing too dramatic so the doctor isn't really that worried. 

A couple of things I noticed while at the doctor's office:
(1) In the 30 minutes while I was waiting for the labs to process (from blood draw to doctor visit), I think there were no fewer than 57 people that had their blood drawn also. WOW! It felt like an assembly line operation for sure. And is oddly scary and reassuring at the same time...are all these people in the same boat?

(2) Okay, don't take this the wrong way, but EVERYONE in these waiting rooms is old...like my grandparents old. It often makes me feel like that Sesame Street "One of these things is not like the other" segment. And it's kind of sad...is this what a long hard life gets you?

Doctor says that I am doing pretty well, all things considered. Everything I'm feeling is normal, and now that I know what a cycle will be like, I can pretty much predict how it will go from here on out. 

I have had a sore throat since Sunday evening. And my tongue is a lovely yellow color. This could either be the "mouth sores" that are a side effect of chemo, or due to the fact that my children are disease-ridden right now and I've got some version of their plague. I'm voting on option #2. 

My teeth started hurting on Wednesday. WTH?! This was not anything anyone mentioned, but is likely a side-effect of the lowering white blood cell count. Great...who knew brushing my teeth was going to be the worst thing I do every day? Time to brave Target and the diseased masses to get some Sensodyne.

By Tuesday morning I am feeling fine (excepting complaints above) and have developed a massive case of cabin fever. EVERY person that would come and visit me is also fighting off the plague (damn those schools and the germ transfer they promote) so it looks like more time spent with my own sick family. Known germs are better than unknown I guess. I have started memorizing television commercials and have been seen watching Christmas movies on the Hallmark Channel. Anyone who knows me knows that I must be desperate. And if anyone tells my mom I was watching the Hallmark Channel, you are off the Christmas list. I think I might be going a little stir crazy. Just a little. Okay, maybe a lot.

I. Am. Tired. All the time. The doctor smiles when I complain about this, with a "well, duh?!" smile. Yeah, yeah, yeah, this is completely normal. I get it. But that doesn't make me like it. I'm used to being on the go ALL THE TIME, subsisting on 4-5 hours of sleep/night. For goodness sake, I work with middle school kids and most days I win the war. Now, taking a shower exhausts me. So pathetic. And apparently, this is the one thing that is going to get worse. How could that be possible?

I have been out and about a little bit this week...to some really exciting places: the doctor, the post office, Safeway (where I wouldn't touch the cart...icky), the church to drop off some Pantry Pack stuff, and Target (where I really was sneezed on by a small child. No joke, the place smelled like disease). Whoohoo, I am a party animal for sure!

Monday, December 17, 2012

In Which I Am Hit By a Truck

I hope that I am not jinxing myself by posting this, but I think I have turned the corner from the first round of chemo. KNOCKING ON WOOD...

The doc warned that the low point would hit at some time over the weekend, and could continue through day 7 (these first chemo cycles are 14 days, so day 1 = chemo, day 2 = shot, day 8 = labs, day 15 = chemo again). Friday morning I was feeling a little dizzy, but this did not last past the morning and the doctor thinks it was probably the residual effects of the meds I took the night before. By Friday evening, I was feeling a little queasy, but nothing too bad. Again, meds to the rescue! The warnings to keep hydrated and keep your stomach full to fend off the nausea were working. 

Saturday morning was a little different. This is when the nausea really started to kick in. No puking (thank God), but NOTHING sounded good. Very hard to keep your stomach full when the thought of every kind of food in your house makes you sick. I subsisted on cranberry juice, Saltines (my new friend), mac-n-cheese (don't ask why this didn't make me sick), and some horrible canned chicken noodle soup. Keith has called a friend and put an order in for her Italian Wedding Soup ASAP! Trying to be helpful, he ran to the store and bought every kind of deli soup that I liked to no avail. Today I hate everything.

And then Sunday around 2am, I realized what the low point really was. By some miracle of God, the nausea meds are still doing their job (in that I am not actually curled up next to the toilet bowl), but I feel so sick. EVERYTHING and EVERYONE smells bad. Not even the Saltines sound good, but I'm gagging them down. To top it off, I feel like I've been run over by a truck...and it backed up over me for a second pass.

The most mundane smells are making me gag. Keith made hashbrowns for the kids for breakfast and I want to kill him (if only I had the energy). The pretzels that everyone is snacking on (which honestly can't be that different than the Saltines) make me want to hurl. And don't get me started on the container of trail mix that Keith opened. 

I've become "that patient." Nothing makes me happy, the drinks aren't hot enough...or cold enough...and don't ask how many times I made Keith heat up the mac-n-cheese.

I consider parental blocking the Food Network at one point. And WHY is every commercial for FOOD? Who knew there would come a time when I would wish for the male enhancement product commercials instead?!

Around 2pm on Sunday, there was a dramatic turnaround. I'm suddenly craving the kids' leftover pizza in the fridge and I convince teenage boy to heat me up a slice (just one, very small, and make sure it's hot). I manage to eat it without gagging, so I'm pretty convinced I've come out of the darkness. 

And then the glorious soup arrives...a vat of it. THANK GOD!

Notes to self for next go-round:
(1) More Saltines on hand

(2) More 7-Up
(3) More cranberry juice
(4) Lots and lots of soups...any version of chicken noodle, or other clear broth type

(5) Even when you think you're feeling better, choosing to watch a movie about cooking/chefs/restaurants NOT A GOOD IDEA. Wait on that until about day 10.

Friday, December 14, 2012

Before It All Goes To Hell...

...Here's how I feel so far.

Last night, I was FINALLY home around 5pm. A little tired, but not too bad. I did have a sinus headache (a side effect of "C" which only few people get...yeah me!). A friend and her kids stop by to snap a quick picture for the 3 Day Walk fundraiser page (will post link when they update it). Another friend brings me much needed soup. And another friend brings some yummy dinner/dessert for the family.

Keith is coaching basketball, then reffing a soccer game. Alex is asleep with a headache. AJ is at the neighbors playing with their kitties. If she smuggles one home, both her and the neighbor will be dead :)

Around 7pm, I start to feel a little nausea. This is completely expected and can be warded off with food and fluids. In the event of that not working, I've got meds to spare!

Have to admit that by 8pm, I've broken into the meds and not feeling great. Not bad, just not chipper and awake. Keith has to raid the neighbors for Saltines (how can we NOT have ANY in this house???). I eat these most of the night. The one pill I took at 8 was supposed to make me drowsy also, but has not. So then I had to hold out until midnight when I could take another one. 

This morning, I had to go get a shot of Neulasta (sp?) which will attempt to offset the complete decimation of my white blood cell count. When I get up, I am dizzy, and a little blurry-eyed. But the sinus headache is gone, and not so nauseous. I know that I will have to tell them this at the doctor visit, and this means they will hijack me and fill me with fluids. But better safe than sorry.

Blood pressure this morning continues to skyrocket...now 128/90-something. Hmmmm. Standing BP is 113/80. Hmmmm. Doc says I can opt for fluids now, or promise to go home and hydrate, hydrate, hydrate. And if still feeling bad, to come in over the weekend. Will do! Let me go home!

Hit Costco on the way home (wearing my cool surgical mask) to stock up on vitamins, sparkling waters, and a fancy new thermometer. Somehow FORGOT the Saltines! And Costco doesn't carry vats of hand sanitizer? How is that possible?

And now I'm home, eating soup and crackers, and LOTS OF FLUIDS, honest :)

By the way, my chart was disappointingly not bedazzled, but WAS right where it should have been.

Happy thoughts for the weekend...tonight, tomorrow, or Sunday is when it is supposed to all go to hell. Hoping for the best, but prepared to deal with what comes.

Thursday, December 13, 2012

Chemo: Day 1

Also known as Ass-Kicking Day #1!

Appointment is at 10:00am and I am supposed to put the numbing cream around the port 1 hour before this, so that it has time to numb the site. Jumping in the shower at 9:15 I suddenly remember this fact. AAAAH! So, obviously need to shower fast and hope the first 15 minutes of the appointment are for asking what my birthdate is. By the way, putting this cream on is a funny Christmas letter moment in and of itself. The port site feels weird to touch, so I don't want to put it on myself. (Now, if you ever need this done, I will gladly do it for you...but easier to do on someone else than yourself). I make Keith do it, and he's actually freaking out more than I was. I think this process actually takes 10 times longer than it needed to. Cream must be covered with Saran Wrap and taped down. Keith, again in charge, obvious thinks the area needed a 9 x 13 pan-size length of wrap and lots of athletic tape, so it's pretty comical to look at. Kind of like when we "stitch" up the teenager's wounds with superglue and tape.

We get there on time, and proceed to yet another wing of the cancer care center. Where I get asked all the pertinent questions...BIRTHDATE, name, etc. And I get a fancy plastic ID bracelet (which actually doesn't fit and I could slip off if I wanted to hand this off to someone else). And lots of stickers with my name, id, BIRTHDATE, patient number, etc. on them.

I get my "room," lucky number 16. Comfy chair, TV, window (view of the parking lot...fancy!), chair for guests (which becomes my foot rest). I get weighed and measured, blood pressure, heart rate, all the good stuff. My normally low blood pressure (90/68) is through the roof comparatively speaking (117/80). This is the first time it's been over 100 in my life time. But I'm the only one freaking out by this, so apparently not a worry.

Lots of blood taken for lab work that has to be done first. Then we need to wait for the results. And here's where it gets interesting. THEY HAVE LOST MY CHARTS! Actually, physically, LOST them! Nowhere to be found. Cannot give me the doses without them. You have got to be kidding me! How does this happen? After quite some time is spent stalling and looking for them, I've been told to go waste some time somewhere. Like actually leave and go get a coffee or something. Come back in 45 minutes. Grrrr...

Keep in mind, appointment was at 10am, so I'd be done around 1-1:30pm. It is now 11:10am, and can't even hope to start before noon. So, Keith runs to get gas in the car, and I sit at the cute little coffee bar with my cappuccino and cranberry pound cake and read.

When I get back at noon, they're still looking for my charts! But, about 5 minutes later, the mysterious folder is found. It was so "thin" that it fell behind the cart they're kept on and no one looked on the floor!!!! Deep breath....

By 12:30pm, the labs are back, drugs are dosed, and I'm being hooked up. First up are the pre-meds (anti-nausea maybe? They really need to write all this down for you, because your brain only remembers snipits of details. Like red pee vs bloody pee...that sticks). Then the first drug, "A." This only takes about 15-20 minutes to push. Then some blood draws I think. Then a saline wash. Then the second drug, "C," which takes about 90 minutes. Rumor has it I might be out by 2:45pm or 3:00pm.

Good thing I brought my new sock monkey friend to keep me company. This is a gift from AJ because she wanted me to have the same someone to keep me company every time. And my new pharmacy technician friend stopped by and chatted for a few minutes. And the nurse I had all day was great! 

Notes I made to myself as the day went on:
(1) Ask them to bedazzle my chart so it never gets lost again!
(2) Make the husband go get noise canceling headphones...NOW! You can totally hear the "neighbors" and their conversations. Today I had the conspiracy theorists on my left, and the cute little senior citizen couple blasting The 700 Club (or other such church channel) on the right. And to add to the fun, not only do you have to listen to them check, double check, and triple check the spelling of all your names, your birthdate, and your patient number OUT LOUD, you get to hear them when they do it in the other "rooms" up and down the hall.
(3) Remember to bring hand lotion! They make you wash your hands so much, but don't have lotion on hand. My hands cannot take all the alcohol in this hand sanitizer.
(4) I forgot to wear the great grippy socks a friend got me. The floors are slippery and you don't want to keep slipping your shoes on/off when you go to the bathroom. Must get more pairs too!
(5) Must bring a warmer blanket next time. I brought a coat, and a nice shawl, but next time, I'm bringing the FUZZY brown blanket sent to me by a friend living in Idaho. One that will cover all of me.
(6) Must also bring my own Kleenex. I am not kidding when I say that the hospital tissues in this place are DENSE and one step above low-grade sandpaper. The toilet paper was softer, and that's not saying much.
(7) Find some sort of leash/sensor system for my "sippy" cups. I'm sure they have fancier names when them come from Starbucks/Keurig, but I still call them sippy cups. I keep leaving them everywhere at these appointments and it usually involves Keith running back in to find them.

Wednesday, December 12, 2012

In Which I Find Out if I'm Healthy Enough to Poison...

Today is the last doctor's appointment where they make sure that I'm good to go for chemo tomorrow, and I'm also supposed to get a "chemo teach" where they explain all about the wonder drugs and possible side effects.

First, the checkup. Have I mentioned before how much I love this doctor? She immediately notices and compliments me on my new haircut. She asks me if I've heard the pathology results from the last surgery. When I say only that the surgeon called me an overachiever, she laughs and admits that's pretty accurate. But she says she has the numbers if I want them, so why not?! This last surgery they pulled out a total of 3.5cm of cancer...add to the 1.1 from the first surgery, and the 2.5 from the second surgery...and that's some scary math. 6.6 CM of cancer! YIKES. That alone puts me into Stage 3, even without the weird lymph node lighting things up. It is agreed that I can stop being this overachiever ANY TIME.

Then we discuss what to expect tomorrow, what the PILES of meds in my bag are for and when, what to eat and what not to eat. Sushi, sadly, a no during this process. So are salads, salad bars, buffets (thank God we already went to Vegas). Only fully cooked eggs (bummer on the loss of eggs benedict). And only fruit/veggies that can be peeled or cooked. It was described like this: apple/orange/banana? Wash then peel. Grape? Peel it or cook it (so, no grapes). No salad. Other than this, nothing is really off the table. Although, we did forget to ask about my adored bleu cheese. Damn...will have to ask that tomorrow. No greasy foods was offered as an advisory to make your stomach feel better. This seems like good advise. 

And fluids, fluids, and more fluids! And yet more fluids! 

Temperatures over 100.5, even if you feel great, bring you into the clinic/hospital.

Then onto meeting with "chemo teach" gal. Who is a pharmacist/technician/nurse and adorable. Young, happy, HUGE sports fan (a fellow Husky Keith can commiserate with, who grew up in a Beaver family). We love her immediately and she gets our sense of humor! Will have to come up with clever nickname for her for this blog, because apparently I'll be seeing her a lot. "Husky Girl" seems weird.

She goes over each of the drugs that will be used tomorrow, how they work, what they do, and the side effects. Pretty basic info for anyone that has done this or knows someone who has gone through it, so I won't bore you will all the gory details. But one of the funnier parts was that one of the drugs makes your urine red, and one can cause blood in your urine. And you're supposed to know the difference because red urine is normal and bloody urine is bad, equating to an immediate trip to the hospital. Great! 

I know that she's wonderful when she doesn't even think we're crazy when I say that Keith won't be staying with me tomorrow, and I probably won't have visitors. This is going to be time for me to relax and read UNINTERRUPTED. She's all for it, but promises to stop by and check in.

Off we go...

Tuesday, December 11, 2012

Tests, Test, and More Tests: Two for the Price of One

Well, not really for the price of one, because it's clearly all about billing you as much as humanly possible, so no "multiple procedure discount" here. But, I did get to have both tests done on the same day during the same appointment, so it felt like a bargain.

First up, the PET scan. This is a scan that requires you to be injected with a radioactive tracer which travels to organs, etc. to help the machine detect whether there is cancer (or other diseases) floating around undetected. Since I knew the tracer takes 45-60 minutes to circulate around, I brought I book to read (of course). 

Here's how it really went: You have to drink a "flavored" barium beverage upon your arrival. OUNCES AND OUNCES of it. And they give you 12 minutes to finish it. And let's just say, "flavored"? MY ASS. I chose mocha, because the thought of berry or banana was already making me gag just thinking about it. The beverage (and I use that definition very loosely) has the consistency of a 4 day old milkshake and tastes like rancid milk of magnesia. And the smell...yummy! No way am I chugging this down in the allotted 12 minutes!

Now, at the check-in, when beverage flavors are discussed and all sorts of other stuff about the tests (like being radioactive...see below), Keith and I are being quite normal (for us) and cracking jokes about the whole thing. Seriously, what else are you going to do but turn this in to something funny. Let's just say that our brand of humor was not very appreciated this morning. And that's being polite. They did not like us, and were actually slightly rude, questioning why I brought such a "mean" person with me to support me. Here's the thing that you must know about us. We have been through MANY tragedies in our 20+ years of marriage (house burning down, losing job, and now cancer to name our top 3). We don't have any other healthy coping mechanisms but our sarcastic wit. And even though he's the one that typically says some of these things out loud to office staff, it's because he knows I want to, but I also want them not to cause me pain on purpose. I promise you people, I'm the one taking notes and writing it all down so others can all laugh about it later.

Back to the day. I meet the nurse/technician and discuss with her whether it's better for me to chug this sludge and throw it up immediately, or sip part of it slowly and keep it down. She opts for letting me sip 1/2 of the bottle to keep it down. THANK YOU! Then she hooks me up and sends the radioactive tracer coursing through my system. It'll then be about 45 minutes for it to get where it needs to go, so I'm supposed to sit back and relax. Great! Let me just get my book. OH NO! This is not an option. Any type of movement causes the tracer to attach to a muscle. No holding books, no turning pages, no moving eyes across the page. I get to lay back and stare at the wall. FUN!

Then I'm fed through a modified tube of death...more like a donut of death. I was told I probably wouldn't need the valium because it was "open" and I wouldn't feel quite so claustrophobic as with the MRI, so I decided to strap on my big girl boots and tough it out. Not too bad, but it wasn't really as "open" as they claimed. But I kept my eyes shut, and it was moving me in and out of the machine, so it didn't make me feel too panicky. 

When this is done, I am fed backward through the machine for the CT scan. Please don't ask me why turning me around makes this a different test, because I'm not really sure it does. Seemed very ridiculous but I'm sure they know what they're doing! I am shot up with something else (not radioactive) that "might make me feel warm all over" but only for a few minutes. Holy crap, they were right. 3.9 seconds after getting the injection I was WARM from head to toe. How is that possible? Kinda cool for someone that is always cold, but kind of an odd sensation too. Luckily, it only lasts about 5 minutes.

And now I'm done and can go home. But here's the catch...I am now radioactive. Like really. Like should I be wearing the yellow hazard sticker? I am supposed to stay away from pregnant women and children for the next 10 hours. Children? As in the ones at school? The place you said if I wanted to, I could go back to work today? I don't think so! What about my own children...that live in my house? I am supposed to stay at least 10 feet away from them, and preferably in another room. I'm not to prepare their food, or sit next to them for any length of time. Hope they don't need rides anywhere.

Husband is pretty sure that he'll be dying of radiation poisoning soon because he's convinced the warning should've applied to all people :)

Monday, December 10, 2012

More Results

We've been waiting for the pathology report from the surgery on 11/30. Fingers and toes have been crossed for "clear margins." (A specific margin around the incision is clear of cancer). So far, we have not been lucky with these results...not even remotely. Each time we get the news, it's been more and more grim, with angry cancer growing like a weed.

I took a shot that this 3rd surgery would do the trick. Threes a charm and all, right? Since they were operating on me to put in the port for chemo, I figured it was worth the gamble. And the reason that it was a gamble? They only do this surgery three times. If they still find cancer, I'm pretty much out of options: mastectomy it is.

When the results finally come in, much later than usual, the myth that no news is good news is blown. Cancer is still there and still growing. Both the invasive and non-invasive ones that I have. She calls me an overachiever. I ask how much/what size, but the surgeon says it's not important. Since I really can't get worse than Stage 3 until it hits major organs, it doesn't even matter anymore.

Except that now its really pissing me off and will start getting its ass kicked on Thursday when I start chemo! By the end of the phone call, the surgeon and I are actually laughing about this. :) So, I am grateful for doctors with my same sense of humor!


Now, if I could just stop getting these phone calls while I'm at school...

Sunday, December 9, 2012

Tests, Tests, and more Tests: The ECHO

Chemo starts Thursday, and this is the week I must have what feels like a million tests. Which are basically the doctors' way of making sure I'm healthy enough to be poisoned at the end of the week. It kind of makes me laugh.

First up, the echocardiogram. (To be honest, I actually had this one already, but was supposed to do it this week, so we're going to pretend). This is basically a fancy ultrasound of the heart. I needed to have this done because the chemo drugs they are giving me have a long-term risk to the heart.

I found this paragraph about an ECG and how it will feel:
"You will be asked to remove your clothes from the waist up and lie on an examination table on your back. Electrodes will be placed on your chest to allow for the test to be done. A gel will be spread on your chest and then the transducer will be applied. You will feel a slight pressure on your chest from the transducer. You may be asked to breathe in a certain way or to roll over onto your left side."


First of all, the one positive thing I have to say about this experience was THEY DID NOT ASK MY BIRTHDATE! NOT ONCE!  I'm pretty sure that someone is going to be fired, but I'm not telling. 

If you have ever had an ultrasound, for example when you were pregnant, you will know a little about what this experience was like. 
The bed: comfortable

The room: dark (I'm initially afraid that I will fall asleep)

The gel: COLD! (Okay, I'm awake!)

The "slight pressure" (mentioned above): MY ASS! I suppose it's not completely their fault that the exact spot they needed to PRESS on the most is right where the incision from my multiple surgeries is. Needless to say, the "slight pressure" on and around it for 45 minutes was not the most enjoyable experience.

The breathing: You know when you go to the doctor and they listen in the stethoscope to your heart? And they ask you to take a deep breath and then let it out? Yeah, that's not what this is like. For the entire 45 minutes you are asked to do the following: breathe normally, breathe in, hold it, breathe out, deep breath, big breath, small breath, half a breath, tiny breath...and on and on and on. Seriously, I don't even know the difference between half a breath and a small breath. Or a deep breath and a big breath. But I do know that when you are doing this for 45 minutes straight, it's a wonder you don't hyperventilate. It did keep my mind off the pain from the "slight pressure" though.

The heartbeat: Ever heard a baby's heartbeat on an ultrasound? Yeah, it's not like that. Or at least my heart beat isn't. I remember my kids' heartbeats being cute and hummingbird like. Mine sounded like a very uneven whooomp-ing sound. A lot like I imagine SETI's transmission searching for life on other planets to sound like. Actually, it's probably what the aliens' reply sounds like.

Saturday, December 1, 2012

Angel Tree

We arrived home from Vegas to find this Angel Tree on our doorstep. The brainchild of a good friend (who might very well have been behind the pumpkin parade). People have been leaving angel ornaments on it this week, and we've amassed quite a few.

The girl child is excited, because she thought that there might not be Christmas decorations or a tree this year, and now she gets one. There's also a wreath on the front door from all my friends at work. I just might have the energy to put up the stockings this week.

If you've left an angel, thank you! We're leaving the tree out as long as the wind stays away, so feel free to stop by and see the love!

Friday, November 30, 2012

Haircut!

In anticipation of being bald, I decided to cut my hair short now, so  that when it starts to fall out, it won't feel that painful. 

Let's be honest, I have never had "good" hair, or at least hair that I want. I've got super thin hair, making long flowing locks nearly impossible because it starts to break once it gets past my shoulders. VERY GRAY, for a very long time now, making it so I had to start coloring it. And it went curly on me sometime between the births of my two children. I'm pretty sure that is punishment for all those bad 80's perms I had done to try and make my wispy thin hair look like it had some "body." Ugh!

Really and truly, there are few things that I actually would like to change about myself. A beautiful singing voice and great hair are about it. I would honestly kill for Kate Beckinsale hair. Well, be careful what you wish for I guess. 

Here's my opportunity to have whatever hair I want, albeit via a wig. However, I've decided that if I'm going to wear a wig, it's going to look like a wig. I've already purchased a Katy Perry BLUE one, and am on the lookout for green, purple, and black ones. (Not crappy costume wigs mind you, I'm out for ones that will last). And I REALLY want hair like Merida from "Brave." The teenager and the husband are appalled that I'm not going to have "normal" hair, but I really want to have fun with this. (Pictures of blue wig will appear soon...stay tuned).

My fear now is that since my hair changed dramatically after giving birth, it is going to grow in completely different after chemo. Please God, just don't let it come back all gray and frizzy...

Thursday, November 29, 2012

A Schedule...Finally!

And more not good news.

Clearly not wanting to break the trend of getting bad news with every doctor's visit, we have kept our string in tact with the latest visit.

Bad news: Angry cancer has moved itself to Stage 3 now. Moving from Stage 1 to Stage 3 in less than two months...yeah me! There is some sort of internal mammary lymph node that is inflamed...enlarged...something very bad. Is it bad that I sort of tune out these doctor's visits when we get to this information? I always think that I'm going to come home and Google the words to find out more details. Problem this time is I can't find the answers that I want to know. Obviously need to start paying attention and thinking faster on my feet with these questions! I've got all these great questions now, which I'll have to save for the next appointment.

Good news: Can there really be good news? Well, I do have a treatment schedule now, so that's actually a positive for someone like me that just wants to put all the details in my iPhone calendar. Tell me when and where and I'll be there! My third, and final, surgery is this Friday. (Yippee! More rooting around with a sharp stick). The chemo port will also get placed at this time. Then some healing time. And then MORE TESTS (echocardiogram...already checked off; PET scan; CT scan. Sounds like more fun in scary tubes of death and more paperwork). And then chemo starts on the 13th. 

Bad news: Because I'm so cool, I get 20 weeks of chemo. A regimen that sounds like its designed to kill me. 8 weeks of every other week dosage, then 12 weeks of every week. Then 4 weeks of rest before radiation 5 days/week for weeks and weeks. A cursory glance at the calendar puts this treatment into SUMMER VACATION. 

Good news: Doc has designed the schedule so that I'll "feel good" for Christmas and "like crap" for New Years. Actually, I'm not sure if this is good news. Hmmmm...this might actually make me feel just good enough to be really pissed about not being in Hawaii.

And now to wait for the results of the final surgery. At some point the bad news trend has to stop, right???

Tuesday, November 27, 2012

Back to Work...Otherwise Known as Stupid Ideas that I've Had

Since I didn't really have anything going on until Friday (when I have yet another surgery...stay tuned for details), I decided to go back to work this week. I was thinking it would be good to actually get out of the house, get some things done, see some friends, and continue pretending to be normal for just a little while longer. Well, that and try to salvage a sick day or two where I can.

Clearly I am on crack! What was I thinking?! :)

First, don't get me wrong, it is great to see all my Evergreen family and be back in the building. However, it has made me realize it's time to stop pretending I'm normal. (Let me take that back...I'm not actually normal anyway. I am slightly crazy on a good day, so maybe normal isn't the word to be using. Let's go with healthy). 

The school day starts WAY too early. Now, this is not new information to me. I didn't like getting up at 6:30am on a good day, but I really don't like it now. I am tired all the time, and was starting to notice this need for naps while in Vegas last week. I have unfortunately gotten used to a weird sleep schedule that involves lots of naps during the day and not sleeping much at night. Yeah, that might have something to do with it. Going to bed at 2am and getting up at 5:45am to wake up the teenager isn't really helping either. Standing on my feet all day, being nice to middle schoolers, dealing with the craziness that is the day to day life of anyone who works in a school...it's exhausting!

Two days down, two days to go this week...I think I can, I think I can, I think I can. Or, as Dory says, "Just keep swimming."

Monday, November 26, 2012

A Week to Be Normal

Still bitter about losing my trip to Hawaii (please don't think this is the last that you'll hear about this), I refused to give up our Thanksgiving Vegas trip. Wasn't gonna happen, no matter how cross-eyed the doctors looked at me.

Not going to bore you with all the details, because if you're my friend on Facebook you saw the daily posts and photos anyway. But I will say that it was GLORIOUS! God was truly smiling on us because it was sunny and 75 the entire week (it's normally sunny and 60ish that week).


We had friends and family with us, we ate MUCH yummy food, saw a show, and sat in the sun by the pool. There were also many, many books read (by me) and quite a bit of swimming (by everyone else).

It was great to have fun, relax, and sort of forget about all that is coming...

Monday, November 19, 2012

Getting Cards and Letters from People I Don't Even Know

Yes, I did just date myself with this reference to Rhinestone Cowboy. It was a popular song in my house when I was growing up and I've always been a Glen Campbell fan.

These past several weeks have brought cards, letters, meals, and gifts from so many people (okay, I really do know them, but still, it made a good post title). Everything is appreciated and please consider this post as my way of thanking you. I cannot even begin to imagine thanking you all individually.

Just to highlight a few:
I've got a good supply of Nutella thanks to a variety of people near and far (Boston and Amsterdam just to name a few places). I should be good for at least for a few weeks :)

A friend sent me a hat that she knitted. LOVE IT...and that it was knitted with love. And no, cute little daughter, this is not for you.

The pastor of the church that lets us use their space for Pantry Packs knitted me a shawl. SO beautiful (cute little daughter wants a matching one of those, too) and I cried a little when I opened up the package that she dropped on my doorstep the other day.

One of my friends went to see one of my favorite authors while he was in town and she got a book autographed/personalized for me. Not just "To Shauna, Happy Reading, Sherman Alexie" but an actual inscription where he wishes me well and hopes that I stay strong, etc. Completely personalized. WOW!

My dear friend and neighbor who literally hi-jacked all the donated food for Pantry Packs that has been sitting in my front hall the last few weeks and put all of it in her own house...in her mother-in-law apartment...where people are staying! She has rallied friends and neighbors staying there to organize, sort, and pack. YEAH!

All the people cooking such yummy meals. And my family would like to thank you all for always including baked goods with the meals. Though I have to say that I hope they don't get spoiled by this because there will not always be platters of dessert EVERY DAY! Hope they don't go through withdrawals when I cut them off.

So many people shlepping my children to and fro. I've already decided two things: 
(1) I think I'll create a signup genius for those of you wanting to take my daughter. (And teenage boy really doesn't understand why you would want her). Every day someone can take her after school...I'm totally fine with this, and she's always wanted playdates every day. Now's her chance!
(2) I am so screwed next school year when I have to pay all of these playdate favors back. There's going to be nothing but slumber parties at my house every weekend, I can already see it coming.

Saturday, November 17, 2012

James Bond Not Even a Distraction

Now don't take this the wrong way dear husband, but Daniel Craig is a pretty good looking guy. In fact, he may be the best Bond ever, except of course for Sean Connery. But since Mr. Connery is a little out of my age group, I will have to settle for Mr. Craig.

Since Monday was a holiday, we decided to make it family movie day. Sort of. Three of us wanted to see the new James Bond, but the 4th was too young. So, we conned grandma into taking the 4th to some animated feature. And then the 3rd decided he couldn't possibly go to a movie with his parents and didn't want to go. I'm pretty sure either dad or grandma laid on the guilt trip, because he did end up going (but not sitting with us).

During the previews, the chemo doc called my cell to talk about "the meeting" she had with the surgeon and the radiation oncologist. Super, now all 3 of them are ganging up on me.

Here are the basics...which I learned about over the phone in the movie theater lobby:

All three agree that desperate times call for desperate measures. A mastectomy is everyone's first choice, but will NOT change the course of treatment. I will have to have chemo AND radiation regardless of what I choose.

There is an "unusual" (this is a word that I am tired of hearing) spot close to my heart (near the sternum? chest wall? breast bone? I wasn't really listening at this point) which is a lymph node that is "lighting up" on all the tests. Possibly has cancer in it, but because of it's location, no one can get to it to remove it. Super!
Five year survival rate percentage (or whatever they call this number) has dipped into the low 70s. That's kind of freaky, by the way. All along you think that your survival odds are like 99% because you're amazing and doing all the right things and it's just a process you have to go through to get to the other side. This is not something I really wanted to hear.

Of the three options for chemotherapy that were given to me initially, one was ruled out because of it's long-term risks to someone as "young and in good health" (another phrase I'm really tired of. I have cancer...how am I in good health???) as me. However, after this confab, it was determined that risks be damned. This is now the course that she wants me to go.

Before I can start anything, I have to have an echocardiogram, a PET scan, and a CT scan so that everyone knows what I was like "before." Yeah, more tests...which means more paperwork (see previous post). 

And then I went back into the movie theater (where us "young folk" were outnumbered 189 to 3 by the senior citizen crowd...teenage boy really loved us for this) and attempted to lose myself in what really was one of the BEST Bond movies ever. 

If only for a little while...

Friday, November 16, 2012

In Which I Consider Getting a Tattoo...

I know that I've mentioned it before, but this whole paperwork thing is REALLY driving me nuts! The surgeon, medical oncologist, radiation oncologist, all the tests, surgeries, procedures, etc. that I've seen or had done are all in the SAME hospital for goodness sake! I practically park in the same parking spot each time. Is it too much to ask that they look me up in that little computer sitting on their desk and say, "Oh, it looks like you've already filled out the forms 487 times. I guess we don't need the same answers from you when we can look you up." Seriously people, a computer is not a new-fangled invention. Can we figure out how to use it in such a way that doesn't lead to the destruction of more forests...or cause me to strangle one or more of you?

Here are some examples of questions that I've been asked on said forms:
(1) Family history of cancer: mother, father, self, spouse: Having a science degree, I thought my grasp on genetics was relatively good, so I'm not quite sure how my spouse having/not having cancer relates to my having cancer. But, as one of my friends said, that question is just for people living in the south.


(2) Please list every instance when you've seen a doctor in your lifetime: SERIOUSLY?! Because I carry this info around with me? And if I did, it would be on some sort of COMPUTER DEVICE. Am I really supposed to remember when my mom took me to the doctor when I was 5? Short of my pregnancies, and visiting my brother in the hospital when he was a kid, I don't really remember much about specific doctor visits. So then my question becomes, is this to weed out the hypochondriacs? Because I'd really MAKE THIS CANCER UP?

(3) Please list every surgery you've ever had and when it was: Again, this is not information that is readily accessible from my brain. In fact, I completely forgot to put the eye surgery and the wisdom teeth removal that I've had done. I only listed the surgeries related to my cancer and the birth of the children. Which, by the way, because I didn't have a C-section, "don't count" as major medical events. Good to know. My hips would disagree though.

(4) Please sign here to authorize us to treat and bill you: Oh, you can bill me all you'd like. That doesn't mean you're going to get paid. Especially since you seem to be charging obscene amounts of money for your services.

(5) What is your occupation and are you exposed to hazardous materials: I teach in a middle school, and YES there are about 800 hazardous materials running around the building.

Questions that I've been asked by front desk people:
(1) "And you're the primary person on the insurance? There's no other insurance for you?" Okay, this is not a new question, as my insurance company itself sends me this same type of questionnaire at least two times a year. Why is it so shocking to people that the "little woman" could possibly be the primary insurance person in a marriage? Sorry, long-standing grudge.

(2) "What is your birth date and why are you here today?" HOLY SHIT, if I get asked this question ONE MORE TIME, I will lose it on someone. I haven't been keeping a tally, but I'm sure that I am up to 273 times that I've been asked this question. Consult with a doctor? Yes, they ask it. Blood draw? Yep. About to get surgery and hopped up on meds? Of course. (They're quite lucky I was coherent enough to get it right). I have told Keith that since I'll be losing my hair anyway, I am going to tattoo: "My birthday is 6/26/71 and I have cancer" on my head just to save everyone some time. I wonder what would happen if I answered the question wrong? Hmmm...that's a possibility worth pursuing to provide some entertainment value (at least for me).

Saturday, November 10, 2012

A Random Happy Moment

Don't get me wrong, there have been happy, and even funny, moments along the way. But this one was something that actually got me through a bad day. On Thursday, on my way to meet with the chemo doc, I had to stop by the school to drop some stuff off. Outside the school, one of my favorite students came running over to say "hi." She gave me a hug and asked me how I was. (And yes, Mr. School District Lawyer, I think the hug was appropriate to the situation). I couldn't really tell her the truth, because to be honest I was feeling pretty horrible about the impending doctor appointment. 

She said that she missed seeing me at school, and told me that I looked pretty good. Having known her for years, I know she is a sweet girl who truly meant what she said, and wasn't just saying it as something canned the way many of us adults do. It made me smile and I really appreciated that she took a small moment of time to stop and say "hi." 

And it also made me laugh to myself just a little because if she thought I looked pretty good in the state I was in, what did she think I looked like on a daily basis at school? Is this how I normally looked? Are these middle school kids taking a toll on me? Note to self: check bathroom mirror for accuracy...

Friday, November 9, 2012

Craptastic! is My New World View

Keith said it, and I am beginning to agree with him: every time we go to a doctor or get a phone call from one, the diagnosis gets worse. Craptastic!

To bring you up-to-date:
Tuesday, the surgeon called from her vacation, to tell me the official results of the surgery. (Note to self or anyone out there who might care: if your doctor calls you from her vacation, the news will NOT be good...just sayin'). The 1 lymph node with cancer is not concerning anyone, because it's "only cells." She agrees that this will not drive the treatment decision. What is concerning is the fact that during this surgery, she just pulled 2cm of cancer out of the original lumpectomy site. Add this to the 1.1cm tumor she removed 3 weeks before, and the total of 3.1cm of cancer puts this angry beast in an entirely new and exciting category. When your cancer triples in size basically overnight, you are obviously graduated up the scary patient scale to the top. She tells me I must make an appointment with the medical oncologist THIS WEEK (medical oncology = chemotherapy).


(By the way, the rest of Tuesday was spent curled up in a ball in bed with a book and the TV. It was mini meltdown day and I'll own that).

Thursday: We had an appointment with the medical oncologist (which will further be referred to in this blog as the chemo doc). First, I have to start by saying that by the time we FINALLY saw her, she redeemed the entire practice from my initial reactions. But in all honesty, when I arrived, I immediately didn't like the place, and wanted to leave. At the time, the only redeeming quality was that their paperwork was so INSANE that it will provide fodder for a future post (stay tuned!). 

The doctor was terrific, very calming and reassuring, she got my sense of humor and she explained everything so well. It's not really her fault that I didn't like what she was saying. In a nutshell, here's the scoop:
(1) Yes, there will have to be another surgery. It'll be up to me whether it's a mastectomy or not, but whatever I choose won't make a difference in the rest of treatment because my cancer is so angry.
(2) Chemotherapy, the one thing that I was hoping to avoid, is a MUST at this point, and the sooner the better. As in NOW!
(3) There are several options for chemo, but she's recommending me to participate in a clinical trial (assuming the scientists like my witty sense of humor, I guess) which will include 6 rounds of chemo. Each round is 3 weeks long. When you do that fancy math, you get 18 weeks of chemo...yippee!
(4) Absolutely no way is she letting me go to Hawaii for Christmas (which, by the way, we've already booked). In fact, if she could convince me not to go to Vegas for Thanksgiving next weekend, she'd have me starting chemo next week.

So now you see why Craptastic! is my word for the day. I did hold it together in the office and asked all the right questions (like, should I plan on working or not? Middle school students are a hot-bed of disease after all), but I did cry the whole way home. And yes, one of the other questions I did ask was could waiting a few extra weeks until after the Christmas Hawaii trip really make a difference? I mean really, how could it possibly, right?! Well, when the expert looks at you and says, "I wouldn't," you'd be stupid not to take her advice. Damn...

Thursday evening involved wallowing in self pity with House re-runs on the TV and a giant jar of Nutella by my side. It did end on a positive note, when my teenage son spent the evening watching TV with me (go Sounders!). We had a bonding experience making fun of the girl child (yeah, we're evil, but she was a little out of control before going to bed), and talking about what they were learning about in biology...CANCER! Of course they are. Maybe he can get extra credit by bringing in my pathology reports...God knows he could use it...

Monday, November 5, 2012

Sometimes You Just Wanna Say "Grrrr..."

It's been several days since the actual surgery, which really was my second "lumpectomy" so I'm starting to feel like a pro. The difference this time is that the surgeon also removed some lymph nodes, so now I have two incisions on my left side, one of which is right through the middle of my armpit. Imagine how awesome that feels.

Last surgery, I took the bandages off right at the 2-day mark like the doctors said I could. I think that this caused me to think I was better than I was and I didn't take it easy like I should have. So this time, I decided not to take off the bandages until the 4-day mark. This was really hard for several reasons: (1) It meant no shower...I'm sure that I smelled terrific, and was considering burning my comfy flannel PJs by Saturday night. (2) The surgical tape ITCHED like a son of a bitch. (3) The tape stuck to my armpit HURT every time I moved my arm. 


But I waited, and when I finally took a shower and peeled off the bandages (which come off easily with warm water, even though normally they appear to be a NASA-grade variety of duct tape), I discovered: (1) It wasn't the tape making my armpit hurt...it was the 3 inch SLICE right through the middle of it. (2) The original lumpectomy scar is now twice as long...yippee! (3) I think I might have permanent remnants of the surgical tape on my skin because I left it on so long. Oh well.

Saturday I received a call from my oncologist, because the surgeon is out of town. He had results from the biopsy and wanted to call me himself. And this is the part that makes you want to say "Grrrr..." because I'm not sure that I really know anything. Apparently the surgeon took out 4 lymph nodes, not 2 (Keith fired for not remembering that detail). Biopsy shows that 1 of the 4 lymph nodes shows cancer cells...but this isn't bad because apparently cancer cells in this case don't necessarily equal cancer (it's not enough of them? Cells not organized?). Don't really know, because silly me for thinking cancer actually equals cancer, and we were hoping to avoid the lymph nodes, but he seemed to think this was a positive result. (Of course, I should have asked what his scale of positive was). However, the lumpectomy site still showed cancer, with margins that were not "good" so he thinks the surgeon will want to go back in AGAIN and scrape out more. GRRRRR!

And I still don't know what this means for further treatment because the surgeon is out of town and she drives the next step. But apparently there is a Breast Cancer Meeting every Tuesday where they discuss current cases, so I'll be discussed by the entire department tomorrow. (And I guess Keith really was paying attention in all those doctor visits, and perhaps shouldn't be fired, because he's the one who said, "I guess they'll be talking about you at the Tuesday meeting" before I told him. And I didn't remember that detail).

Wish I knew more. Treatment? When, where, and how? These would be nice details, especially as I'm trying to plan that trip to Hawaii.

But what I really want to know at this point is, do I get a frequent flier discount??? Because right now, without having the bill from the original mammogram/ultrasound (hoping it's lost or was free since I passed out) or the anesthesiologist or this second go-round of surgeries, we're already looking at over $1,200 in co-pays...which is KILLING us! Will keep you updated on the grand total when all is said and done.

Thursday, November 1, 2012

In Which Pumpkins Play a Role

October 31, 2012:

Halloween...better known this year as Surgery Day. Which, by the way, starts WAY TOO EARLY! Especially when you are not allowed to eat or drink anything. Perhaps I should have had that caffeinated beverage with dinner last night. A caffeine headache is really not a good way to start the day.

After a fun-filled morning that involved getting the teenage boy upright and had my mother showing up at the house at 6AM (let's imagine how well everyone was getting along since we were all tired and caffeine-deprived), we arrive at the hospital at 7AM, right on schedule. My detailed sticky notes with the directions on where to go have mysteriously vanished out of the car, so I'm not sure exactly where to go. (Not so mysterious, really...I blame the husband with a penchant for clearing everything out of the car before he drives it). But my vague memory gets us to the right "zone" and the right floor and the right nurses station for check-in.

Pre-op is the first stop, and everyone is nice (even though I can see their Starbucks beverage containers and smell their coffee breath). The nurse in charge of getting me set for the day does a much better job at inserting my IV than the anesthesiologist did last time. I hope she's getting paid the big bucks. 

At 8AM I get to head down to "Nuclear Medicine" for my injection of radioactive dye. Can you even imagine how science major me is remembering reading all those books on Marie Curie right now? Must not think about it, and they promise me it's a small dose. This dye will show the surgeon what lymph nodes the cancer likely traveled to first. Once injected, I have to walk around the hospital, in the awesome gown, moving my arms around to get the dye moving. Let's hope there's no surveillance footage of that.

At 9AM I am scanned by some crazy machine that reads the radiation and shows that the lymph nodes can be seen. This is good and means I'm ahead of schedule. It also means no more roaming the halls flailing my arms around. Back up to pre-op, where I get everything finalized for surgery.

At this point, can I just say that even though EVERYONE has my paperwork and I have a newborn baby ID tag on my arm with all my vitals, I have been asked no fewer than 10 times what my name is, what my date of birth is, and what procedure I'm having done. They say this is just standard double check protocol, but it's becoming annoying as hell. I'm up for barcoding the info on my forehead at this point and just running me through a scanning station.

Back in pre-op (on a pretty comfy bed that I'm considering stealing), I meet with the surgeon one last time. She draws all over my left breast just to make sure she gets the correct one in surgery. We kind of laugh at this, and I'm grateful that she's not dressed up for Halloween. We joke about this too. Then I meet the surgical nurse, and a new anesthesiologist. I have to say this now, and I'm surprised I didn't say it out loud at the time, but this guy's arm is in a cast, which I am pretty sure is not part of a costume. Seriously, are you injecting me with needles? Poking sharp instruments into my back? Do I trust you to do all this with a cast? But I think nothing more is getting poked into me, just fed through the IV, so I'm not as freaked out as I probably should be. But it was pretty funny because it really is how this whole process has gone.

About 9:40AM the happy meds are pushed, and he tells me that this will just make me feel a little woozy and then when they get me to the operating room, I'll have the dose that knocks me out. LIAR. At 9:41AM, I am 6 inches out the door of pre-op and out like a light. Don't remember anything else. Hope I wasn't supposed to. I wake up at 12:15PM in recovery all bandaged up.

I finally leave the hospital at 1:30PM or so, after getting my pain meds. Note to anyone in the future, when they ask if you want to get your meds from the hospital pharmacy, JUST SAY YES. Forget your damn Target rewards for using their pharmacy. The hospital pharmacy gal will BRING IT TO YOUR ROOM before you leave...no making stops on the way home. 

Surgery details: surgeon claims to have scraped everything out around the original tumors. She removed two lymph nodes which are going to be biopsied. Guess what? More waiting for results! These won't come in for 5 days or so...grrr...

Now, you're still wondering how pumpkins play a role, right?
(1) When the surgery was over, I was ORANGE from chin to waist from the iodine (still am, by the way, as I'm not allowed to shower for 2 days). And I was carved up like a pumpkin, so the joke is that I was dressed up like a pumpkin for Halloween.

(2) A friend dropped off pumpkin bread the day before the surgery, and quite honestly it has kept me alive because it was the only thing that I felt like eating yesterday and this morning. 

(3) Pumpkins began showing up on our doorstep yesterday afternoon and didn't stop arriving until evening. It was a little pumpkin vigil that was someone's brainchild, but I don't know who to credit, or even who all the pumpkins are from. It was a super sweet gesture and at the end of the night, I think there were 15-20 pumpkins on the front walkway. 

And just so you're wondering how the family is holding up:
Keith: Today he stopped by my parents and my dad said, "wow, you look exhausted!" So he's obviously not looking so hot if my dad is noticing.

AJ: Stopped by the house in the middle of trick-or-treating to say "hi." She was concerned that I not hug her because I might ruin her vampire makeup...not that it would hurt me, but that it would ruin her make-up. Your mom's health clearly not super important when trick-or-treating is involved.

Alex: Some friends brought teriyaki to the house for dinner last night, and that is the thing that he was most grateful for yesterday. Oh, and he's wondering who's job it is to clean up the pumpkins from the front porch :)