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 :)