Spring cleaning

Around this time of year I get the itch to start spring cleaning.  There is more visible sun, which lifts my spirits and brings me out of my winter doldrums.  For several years I've had a "winter break" from school which leaves me with too much time on my hands.  The need to scrub, organize and purge is overwhelming, and within a day or so the compulsion gets the better of me and I'm in the zone for at least a week.

That itch hit yesterday at 4:45 pm, and by the time Ken came home from work at 6:00 I had torn half the kitchen apart.  Some things are going to the Open Door Free Store in Concord*, and some items are being offered to family members.  Some items may still arrive on the doorstep of my childhood church as they prepare for their spring yard sale.  Regardless - they will be departing our home and finding new places to live, to be loved, and to be used instead of being stuck in a drawer or cabinet, gathering dust.

I remember walking into the kitchen yesterday afternoon and feeling overwhelmed by "stuff."  Most people wish for more; I often find myself praying for less.  I have been blessed with friends and family who have shared many gifts over the years from their own homes - bread makers they no longer use, a random crock pot, another blender.  I am not without guilt in this, either; I have a love for dish- and glass-ware, and for many years purchased several sets that caught my eye and I simply could not live without.  I have a love for kitchen gadgets in particular, and so our kitchen is often the place of "item concentration" in the center of our home.

But the stuff started to weigh me down yesterday, and I knew it was time to get rid of it. 

There is a character in one of my favorite movies, "Labyrinth," named the Junk Lady.  She carries everything she owns on her back, and as she moves through life and continues to acquire items, they, too, take their place on the ever-growing pile of things she carries on her shoulders.  In the movie she works to help Sarah, the main character, create a junk pile on her own shoulders, of all of the "things" Sarah finds important - a pretty trinket, a stuffed animal, a lipstick.  In this moment Sarah forgets the most important thing - her quest to find her brother - and gets caught up in becoming, herself, a Junk Lady.

Standing in my kitchen, I felt the weight of the Junk Lady standing behind me, urging me on.  I have so many things - wonderful things, beautiful things, useful things, gifted things - but the weight of these things keeps me from moving forward with the most important thing - living my life.  In order to move forward, I need to leave some things behind.

I would by lying if there wasn't also some need to clean, to purge, in an effort to lessen the burden of that task when I am no longer here.  Trust me when I say I don't know anything you don't know; I haven't gotten any "news," nothing has changed.  I am not planning for my death, rather, I am planning for my life.

The lessened weight gives me energy to get on with the business of living.

Next task - the sewing/craft room.  And that is going to be a challenge.

* The Open Door Free Store in Concord is organized and run by several churches in the area, and carries items from kitchenware to books to linens to toys to clothing of all shapes and sizes, to furniture and appliances.  They are a place for those in need - no questions asked, no strings attached.  Everything in the store is, as the name implies, FREE - come in and take what you need.  I urge any of you within driving distance of Concord to consider items you may no longer use, that can be used by others, and make a donation to this wonderful place.  As the proprietor told me, "No donation is too small; a single person starting over only needs one fork and one plate, not an entire set of china."  Let your inner Junk Lady find that fork and plate and share it with someone in need.

Over it

I'm really over this whole cancer thing.  Like, it was okay at the beginning when I got lots of attention and had an excuse to be lazy, but now, I'm pretty much over the whole Oh-I-Have-Cancer shit.

(edit:  I hope everyone sees the sarcasm in these comments.  Sometimes, I sound so serious, but I rarely am).

For several days I fended off the upper respiratory viral infection that was going around.  Never got the full-blown flu-thing, but felt awful and really couldn't function, nonetheless. Day 10 came with some foggy clearing; I actually made it to my morning class before I simply couldn't continue on.  Drove home to find the Peanut visiting, so we took a nap (okay, I slept, she watched Sponge Bob), we read, we lounged, and most importantly, she decorated the cake for great-grandma's birthday celebration on Sunday.

Sunday - the day everyone in the family was going to get together to celebrate (albeit a couple of weeks early) my mother and my husband's birthdays.  Amy is still in town from Alaska; Mary was bringing her boyfriend to be re-introduced to the entire family.  Mom's sister was even driving in for the event, something she doesn't do often.  My lovely children were going to be there - I can never spend enough time with them lately, it seems.  We were all going to be together and it was going to totally rock.

Except I woke up Sunday with a stomach virus that knocked me on my ass.  Normally I'd carry on, but I can't; dehydration is my sworn enemy, especially four days before my next AC treatment.  I have to be well-hydrated or I'm just going to be in serious trouble.  I can't remember feeling so much stomach pain before that it made me wonder if "something" was going on.  Every sip of water made the pain worse; I knew if it continued I'd be visiting the hospital, so I sat on the sofa and cried like a baby and told my husband I wasn't going to the party.

I cried when I called my mother to tell her; I cried when I called my sister.  I threw a mini temper-tantrum in the privacy of my bedroom because I'm sick of this shit.  And everyone is so kind and generous; everyone understands, it's not like I want to be sick or I'm just trying to get out of having a really good time with people I love and miss.

So I went to bed when everyone left for the party, and fell asleep instantly.  I awoke briefly when they all called to tell me they missed me; I feel asleep crying again because I wasn't there helping them celebrate such a special occasion.  I slept until Ken returned much later, sharing stories of Princess Peanut in her full princess regalia (wedding veil and Aunt Lindsay's pearls included) and other celebratory shenanigans.  I ate some jello, which didn't hurt much, and back to bed early to hopefully sleep the bug away.

This morning I awoke to feel rested and pain-free; coffee and water didn't hurt, nor did the applesauce and jello later.  So now I'm chugging water in preparation for this week's final AC treatment - an accomplishment I will celebrate in style.  No more AC means far fewer side effects, particularly the exhaustion.  Taxol - my next 6 treatments - will have their own SEs (including short- or potentially long-term neuropathy).

Hopefully, this will also mean the end to missing important occasions - but I doubt it.  So many BC sisters have told me that chemo is "doable" and that they worked full time and raised children and made love to their partners twice a day and walked up hill to work five miles each way, in waist-deep snow, singing "Whistle While You Work" along with the bluebirds...  I feel guilty that I can't keep up the pace with just a part-time job and part-time school and no kids at home to worry about.  What's wrong with me?

Today is a good day, so I will accomplish what I can do.  Tomorrow - who knows?  I guess we'll just have to wait and see what the day brings.

The dawn before the storm

Feeling better, finally.  The virus seems to be abating; tomorrow is Day 10 which is now fondly dubbed Somewhat Human Day around here, so perhaps the convergence of these two events are helping me remain vertical for longer than 10 seconds.  I'm still taking it easy, just to be safe. 

When I was feeling particularly whiny the other day, I posted on a BC support forum I belong to, in a group of women who all started chemo in January.  Many of us are on the same protocol, some of us on the exact same schedule, and so we carry each other along during the rough patches, and (virtually) hug each other when we feel we can't go on.  In my low moment, I started to equate this disease and treatment with something akin to PTSD.  We have been told we have cancer; we've been told we could die.  We are cut up and reconstructed and poked over and over again.  We are pumped full of drugs that could kill us, that are meant to kill parts of us.  We want to live, but every treatment leaves us feeling like we are dying.  We know we must do this, but none of us really wants to make this choice. 

The first treatment is difficult because we fear the Unknown.  The subsequent treatments are difficult because we now fear the Known.  I can smell the infusion room when I step off the elevator; I can taste the drugs before they're even administered.  I can no longer wear the shirt I wore to my first infusion so I donated it.  I drive past the hospital on my way to the store and find my stomach in knots.  It's not like a one-time event for us, either - say, a horrific car accident that we relive over and over in our minds - but rather a repeated event that we actively participate in (we chose to go to treatment).  We can't get away from our experience.

I wouldn't change for a moment every thing that I do to fight this battle.  It is what it is, but sometimes it's just traumatic.

So after my post, one of my BC sisters commented that there are "way worse cancers you can get" and that at least what we have is treatable.  She is right, in some ways.  Right now, my cancer is treatable, possibly even curable.  Does that fact make it any less traumatic?  Do I feel any better, do the drugs make me feel any less like walking death?  Do I enjoy my every-other Thursday trips to the infusion center? 

But some days, knowing there are "way worse cancers" doesn't take the fear and anxiety and exhaustion away.  It doesn't make it any better.  So that is where she is wrong.  There are degrees and perspective to everything in life.  I am blessed that I am not Stage IV, but I still have cancer.  I am grateful I have insurance, even though we're learning that insurance is not as great as we once believed.  I am loved by a partner who truly cares for me and does not consider this a burden, but he still works hard to take care of me, of himself, and of everything around us.  I am lucky to be alive and still fighting, when so many do not have that opportunity. 

So I can balance the bad with the good.  And in the end, it's all good.  Because I'm still here, still whiny, still fighting, still determined, and still carrying on.  Another day is just that - one more day.

All it takes is one nasty little germ

It finally happened:

I got sick.

I can't blame the chemo necessarily - I've been remiss in protecting myself from potential illness; I've become complacent with regard to the serious nature of germies.  Those little buggers are actively out to get me right now, and I thought I was above all of that.

Now, I'm flat on my back in bed with a fever and a sore throat and a really bad, whiny attitude.

I've been repeatedly told to avoid crowded places like the grocery store, schools, the mall, even the gym (when you really think about it, the gym is probably the germiest place on earth...) - in other words, the places I frequent with alarming regularity.  I was chided by my chemo nurse recently for not having a flu shot this year (I countered that I've never, ever had a flu shot, so why should this year be different?)  She pointed out that my white blood cell count (WBC) was higher than they liked before last week's treatment (indicating my body was fighting some kind of infection), so I suppose I should have seen this coming.

So I've just been flirting with disaster since the first day of treatment.  And yesterday, I got hit by the Sick Bus.

Kinda sucks, for lots of reasons.  Normally I'd load up on OTC meds and drag myself off to work, but I don't have the energy to do it.  If I push myself while I'm sick, I'm only going to get sicker.  And because chemo is doing its best to pretty much destroy lots of cells in my body - healthy and otherwise - it's like opening day of deer season in the U.P. right now.  Anything healthy is taking a hit from all the nasties floating around, and I have to work twice as hard to be half as healthy.

It's hard to explain how one simple little germ can really derail me right now - even I don't really believe it (or rather, I didn't until yesterday).  With the exception of being bald, I don't really look sick, and I've had several people tell me they "forget" I'm in treatment.  Makes sense - I forget sometimes, too.  So I hug and I kiss and I shake hands and I snuggle up and I share air and I hang out in rooms with sneezes and coughs, because that's what I would normally do.  Except that I'm not normal right now.  For most, a fever of 101 or 102 would mean going to bed and drinking tea and popping Advil; for me, 100.5 means I'm on my way to the hospital.  Guess I need to take this whole "germ" thing more seriously.

Today is shaping up to be a "stay in bed and heal" day.  With lots of hand sanitizer and Clorox wipes at my side.

I thought it was a whale...

There have been rumors swirling around my house about a "surprise" for the last couple of days.  I'm not necessarily one for big surprises; I get caught off-guard and feel uncomfortable and then have to worry about being nice and polite and, well, lately, my politeness button seems kinda stuck in the "off" position (I could blame the steroids; I should probably just grow up and take personal responsibility, but where's the fun in that?)

My daughter, S, asked if she could come and visit on Sunday, and I was very excited.  She works for a large corporation and supports corporate taxes and, well, you know what time of year it is.  She often works long hours with minimal time off, and knowing she would spend precious downtime with me really lifted my spirits!  Then my sister Mary mentioned she too was going to stop by, and I started to wonder why - she lives an hour away, why pop on over on Sunday evening?  But, okay, I just figured I'd go with the flow.

My son M called in the afternoon and asked if he could come over and grab a few of his belongings - sure, why not?  "Your sister and aunt Mary are coming over, so let's make it a party!" I said.  Then I laid down to take a nap because I was so tired, and beginning to wonder what was really going on.

Facebook - the hub of all worldly knowledge - informed me that S was actually in Chicago with her friend C.  At the Sears Tower, taking graphic and frightening pictures of the world below.  She noted having to pick up my surprise at 3:00, and then would be driving back to Jackson.  What in the world could she be getting in Chicago that she couldn't easily find closer?

Mary, Ken and I speculated as to what the surprise could be.  I suggested a puppy - but really, a Chicago puppy would be so bored living in Jackson.  Okay, Chicago - maybe S went to Shedd's Aquarium and smuggled me out a whale!  That's it!!  We'll put it in the bathtub, throw in some kosher salt, feed it squirrels and mice and cats (oops!) and it'll be happy.  That's it - I was going to get a whale!  Bonus points to S for being creative!

Of course, my sister and husband knew what was up.  Michael knew, too, when he arrived, but all were equally mum and suspenseful.  And now they were texting S, who was furiously driving (the only way she knows how) back from Chicago with my whale tied to the top of her little car.  I just hoped it wasn't too cold. 

Finally, S arrives safe and sound, and brings in my surprise:

My sister Amy (on the left).

Amy has lived in a relatively remote area of Alaska for the last 15 years.  Getting to and from her area requires puddle-jumper flights, ferries, and sometimes trains.  It can takes days instead of hours, and if the weather is significant (as it has been lately in Alaska), travel can be impossible. 

And yet, somehow, my sister was standing in my living room.

She made it down to California, and from there flew into Chicago, where S picked her up.  (Interestingly enough I had ventured a guess that Amy was my surprise, but I never truly believed it; Mary almost spit out her drink and Ken, smartly, pointed out that it would be easier for her to take a train into Jackson than to be picked up in Chicago - good cover job, honey).  When I ventured a guess that it was a puppy, S suggested to Mary that she tell me it was an Alaskan Malamute.  My family - crazy and funny as ever.

So my sister has arrived for a 10-day visit, the first visit in many years.  She kept telling me she was coming, but I knew it would be difficult and so I wasn't expecting it right now.  I wanted so much to see her, to just sit and talk, to catch up, to do all the things you want to do when you don't know what tomorrow will bring.  But I never expected it would really happen.

Today, we all get to make one more surprise visit - to my parents, who don't know that Amy is in town.  Another life-affirming moment in a time of uncertainty.

Thank you to my family for being, as always, supportive and generous and kind and loving.  And surprising.  Because not all whale's need a bathtub - some just need to be hugged and kissed and loved.

Third down, mini goal on the horizon

I can do great things for small periods of time.  Breaking my treatments up into two separate treatment regimens has given me some hope, and a more reasonable goal.

Yesterday was my 3rd of four total AC treatments.  I can say I am official 3/4 of the way done; 75% through; only one more to go!  The AC's are the hardest by far - on my body, on my brain, on my very soul.  I will deal with the remaining six Taxol treatments when the time comes (a fellow BC sister likened Taxol to "a vacation in Aruba" after AC treatments.  I could really use a vacation about now).

For some reason, yesterday's treatment was hell.  Not the treatment itself; that was routine and mundane and uneventful.  But going to treatment brought out the waterworks again; I cried on the way there, I cried when I got there, I cried throughout the treatment, I cried when I was done.  Even the Ativan they so lovingly give me early on didn't help calm my nerves. 

I think, during the first two treatments, there was still an air of the unknown, which doesn't mean excitement per se, but rather a morbid curiosity about what's happening.  The second treatment my sister was with me, taking pictures and chatting animatedly about all that was going on around.  It wasn't quite a party, but if we'd had the hats and crepe paper we could have rocked that little corner of the infusion room.

Yesterday felt different.  Half of the nursing staff and one of the NPs were out with the flu - I immediately started worrying about the germies floating around.  My side effects this round were much more significant than the first - so how will I do after yet another treatment?  My medical staff didn't seem concerned about the occular migraines I've been having, but is concerned I'm having a flare of my ulceritive colitis, which could delay treatment while they work to bring that under control.  I've learned that yes, it is quite possible to be simultaneously constipated and have diarrhea.  And for the first time yet, I had several bouts of nausea, albeit mild.

As always, the exhaustion is what brings me down first, and I'm certain that didn't help my emotions of yesterday.  Maybe it was a mistake to bring along my policy textbook to help pass this time.  For the first time, I couldn't open my eyes at all while the nurse infused the Adriamycin - I just couldn't watch it being injected into my IV.  That red syringe feels like death, sometimes, and I am so tired of seeing it.

I fully intended to sleep yesterday; instead, in an effort to punish myself, I spent the afternoon doing taxes (with no toy surprises at the end of the rainbow, either, damn you Uncle Sam).  I finally fell asleep early, to awaken at my now-usual 4:30 am. 

But in the back of my muddle and tired brain, I can rejoice in the fact that there is only one more AC treatment left to go.  I will drag myself through the next 9 days so that, on Day 10, I will rise and smile and be happy again.  Until then, watch out for cranky, cuz I just sense that's how this next week or so is going to go.

"What happened to your hair?!"

Slowly but surely, those around me at EMU are learning about my diagnosis.  I'm not being secretive about it, I just haven't been sharing it with many people.  As my hair has fled and my wearing of scarves has increased, more people are asking what's going on.  They're not necessarily asking me about it, but they're finding out regardless.

Today, a student I think I've talked with briefly once or twice, passes me in the hall and says,

"Are you having a bad hair day?"

I'm wearing my new favorite Beaubeau (black with a blue and purple abstract design) and before thinking I respond nicely, "No, not a bad hair day."

"So why are you wearing a scarf if you're not having a bad hair day?" 

"I'm not having a bad hair day.  I'm having a no hair day."

"You don't have any hair?  Why don't you have any hair?"

"Well, chemo kinda killed my hair."

"You're doing chemo?  Why are you doing chemo?"

I really don't know this student.  She's nice enough and kind enough and I didn't mean to get this far into a conversation I didn't want to have, but it happened rather quickly and it just.  kinda.  happened.

So I don't respond.  I just don't say anything at this point.  After a few seconds she responds,

"Oh, my, you have cancer.  You have cancer?!  Oh, goodness, let me give you a hug..."

Two hours later I'm working at my desk and another student - one I've known for a couple of years - approaches my desk and says very loudly,

"What happened to your hair?"

"Well, I lost my hair."

"Why did you lose your hair?"

"I'm doing chemo."

"Chemo?  Oh my god, you have breast cancer.  You have breast cancer?  Oh my god...  Why aren't you wearing a wig?

I don't know how she made the jump from chemo to breast cancer (maybe that's just the obvious place to go, I don't know).  It turns out both her sister and mother have had breast cancer, and both are five years out and doing well.  It was a good conversation, even though it started out rather awkwardly.

It's interesting how some people don't want to talk about it, and some people have no qualms asking questions that appear, on the surface, to be less than tactful.  But they ask - they're curious and they want to know.  And they're asking me, not someone else.  So even though both of these conversations felt a little uncomfortable, I realized that was my own issue - my own discomfort with how I feel I look to others, and what I perceive my scarves are saying.  I'd rather have the conversations, than leave people wondering, speculating, or whispering amongst themselves.

Attitude of Gratitude

Those who know me also know I talk.  A lot.  I talk about my husband, my kids, my grandchildren, my family; I talk about school, about work, about running, about yoga.  I talk about the past, the future, and everything in between.  I have very few (or any?) boundaries and often find things flying out of my mouth without thought.  I'm constantly working on self-awareness in relation to my need for constant discourse.

Most people mistake this for attention-seeking.  In reality, I don't like to be the center of attention; I just like to share.  Talking is a way for me to connect with others, but it's also a mask for feeling socially inept and inadequate.  If I can talk about mundane or outrageous things, I can take the focus off my inability to feel comfortable in a crowd of people (note that a "crowd" constitutes me and at least one other person).  Truly, I often struggle with what to say to people, fearing their reaction, worrying about saying the "wrong" thing. 

Of late, my dislike of being the center of attention has been greatly challenged.  Indeed, everyone around me wants to be helpful, to give, to share, to support...and to talk.  Friends bring dinner, snacks, treats, hats; they send cards and emails and notes and call; they stop by, they visit, they stay for a while.  They take turns sharing a basket of useful items and dinner components and warm fleecy gifts.  They want to know how I'm doing; they want to know what they can do to help.  They are genuine and kind and compassionate, and I am so grateful to be supported and uplifted by so much love.

But all this kindness and attention challenges my social abilities, and sometimes it's just kinda hard to accept.  I am not that special; I am just me.  I think about all the other men, women and children out there struggling with their own illness, with another illness, or just trying to get through another day, and I feel like they are so much more deserving.  Saying "thank you" isn't hard to do because I am truly thankful for everything and everyone, but I worry that I sound like a broken record, that people won't believe me, that I sound disingenuous.  I cry so often, overwhelmed by the kindness of others.  And I don't know how to say "thank you" enough to repay their kindness and generosity.

I have always had an attitude of gratitude, but it has risen to a whole new level.  I am grateful for more than simply being alive and healthy; I am now grateful for the chance and ability to fight.  The support of those around me gives me wings to fly through this moment in my life.  For someone who likes to talk so much, I often don't have the words to express my gratitude; it's so much bigger than a simple "thank you" can express.  Being loved gives me power and strength, but also humbles me immensely. 

Maybe, someday, I'll find the words to express my gratitude.

Phoenix Rising

When my daughter S was a little girl, she was very sick with strep throat.  When I asked her how she felt she said, "I feel sideways" - from the fever bending her sense of reality.  I now understand the long-term effects of feeling "sideways."

Day 10.  Glorious Day 10.

I feel like a phoenix rising from the ashes on Day 10.  I discovered this during my first treatment, as well.  I spend the first three days post-treatment in a steroid-fueled haze; I don't realize how bad I feel until it has passed.  The next few days, without the steroids, are a slide down into heck (not quite hell...but darned close).  Day 10 - Saturday - appears to be the day of cloud-lifting and fog-parting; the flu-like symptoms and feelings start to abate, and I don't feel like crying at the drop of a hat (or scarf...or cap...).  My sense of smell and taste start their return to normal.  I am no longer sideways.

If I can make it through the week after, Day 10 becomes my reward. 

On My Own Terms, Part Deux

As my hair fell out in clumps last week, I realized the importance of a buzz cut.  Short and to the point (literally), my hair was almost all gone, just a 5-o'clock stubble in its place.  I was pleasantly surprised to feel the empowerment of GI Jane, rather than the sadness of losing my hair.

Yesterday, after my shower, I ran my hair over my stubble - and found my hand covered in little tiny hairs.  I rubbed my hand back-and-forth - and they rained into the sink like dry pine needles off an old Christmas tree.  I checked the shower and found the tub ringed in little black hairs.

My hair was taking it's second - and final - leave.

I put on a scarf and tried to slide it to the left a little, and the pain was excruciating.  Interestingly, pulling hair out in handfuls doesn't hurt, but the little hairs that hang on after shaving are like shards of glass implanted in your head.  They lay in a certain way, and to move them backwards against the grain feels like running a Chore Boy over your bare skin. 

I spent all day wondering what to do.  I was told to be careful with shaving - the risk of infection from cuts and all.  By 3:30, I realized I couldn't lay my head down without feeling a thousand pins sticking into my head from all angles.  I didn't know how I would sleep if I couldn't lay my head on a pillow.

And so I ventured into the bathroom.  45 minutes, one dull razor and half a can of shaving cream later, I am now officially bald.

Shaving your own head is an adventure.  There are little spots behind your ears, on the very back of your head, and on your neck that are impossible to catch on the first pass.  There is a spot on the top of your head, where your hair sprouts from, that has a grain that runs in several different directions at once, which means you need to pass over that area from multiple different angles to catch all the hairs.  And forget looking in the mirror - my brain has never been able to process doing things flipped and reversed.

I don't have a picture, because I don't like it.  When I was finally finished and I looked in the mirror, I felt like Samson - all my empowerment was gone with those final, stray stubbles of hair.  My head is grey, untouched by 48 years of sun and fun, and the pores still hold the remnants of follicles.  Ken tells me I am still beautiful, but I begged him to let me feel ugly for a little while.  There is nothing beautiful in this, this look, this reminder, this final leaving of the hair.  And when I look in my face I see half my eyebrows, only a select few eyelashes.  My legs have been bare for over a week now, and my arms are freezing without their tiny little blonde hairs. 

I joked that I would completely rock the Uncle Fester look - but now that it's here, I'm not so sure. 

i want my life back

I get tired that everything seems to - does - revolve around cancer.  What I do, what I can't do, what I don't do because I'm too tired, what I feel, what I say, what I think, what I plan, why should I make plans when I don't know...?   "One day at a time" is both limiting and liberating, keeping me from doing too much, but also keeping me from doing too much.

I am not my cancer.

But I live every moment in a bubble of awareness of this thing.  Every little ache and pain must mean something, must be related.  My days are mapped out based on self-care, which requires self-awareness - which requires more damned energy than I have most days.  I want to be normal and so I live that way, but this is not normal and so I fail miserably, then fault myself for doing so.  So.  So tired and frustrated and angry.

The anger is not often there, at the surface; indeed, I am outwardly happy and blessed and truly positive.  But as days pass I find myself more angry than I expected, more angry than I want to be.  I don't have time for this shit, I don't want to deal with this, I am just.  so.  tired.

Yesterday I wore my new scarf to school for the first time.  I bumped into a nursing student I hadn't seen since before the holidays.  She smiled, not recognizing me at first, then - then she knew.  And she Knew.  And she didn't say anything, but there was this look in her eyes of, what?  I thought I saw pity.  Questions.  Maybe a little fear.  Usually we had nice long conversations, but not yesterday.  She just couldn't.  I couldn't.  I realized later that I probably projected my own shit on to her intentions, but maybe not.  A friend asked me what I would do when people didn't ask questions but had That Look.  I thought I'd dig a witticism from the depths of my collection and throw it at them - but I can't, it's not fair.

Life is just so not fair.

I Whip My Hair Back and Forth

...or rather, I would, except I don't have any.  But my brain hasn't figured that out quite yet. 

When you've always had hair, suddenly not having hair is an odd and interesting experience.  And I don't just mean short hair - I've had that frequently over the years - but really, truly, having no hair.  For instance:

* I take my shirt off this evening and shake my head to get my hair back into place.  Dang...
* I grab the brush this morning, without thinking, and brush my...head... (*ouch!*)
* I tuck my hair behind my ear...again...and again...
* I flip my head to the right to get my bangs out of my face...again...
* I forget to put a cap on and can't figure out where the draft is coming from (seriously...)

The joy of resembling an attractive hairless cat is that I can snuggle in for an extra half-hour of sleep in the morning (if I could only sleep, that is...) without the need to rush through the shower / blow-dry / style / bad-hair-day-anyway thing.  Kinda takes the pressure off of coloring, cutting, moussing, brushing, styling, pony-tailing and barretting, too.

I have several head-covering options, including beautiful scarves and hats.  I can easily coordinate them with my clothing, and in seconds I'm ready to face the world.

About nine hours later, however, I have a terrible headache that is determined to split my skull open.  It's likely just a nasty side effect of one of my meds, but I decide to take my scarf off on the drive home this evening to relieve any extra pressure on my neck/head.  Probably, I should have waited until I wasn't stopped at a light next to what appeared to be a mom and her younger son.  Hopefully I didn't scar them for life.

On My Own Terms

When I went in for my second AC treatment, the nurses commented on how beautiful and lush my hair was, 14 days past first treatment.  Apparently, hair tends to fall out within the first 10-14 days.  The nurses cautioned me that my hair would start falling out soon.

It didn't take long for me to realize the truth of their prediction.

When I woke this morning, I discovered more hair on my pillow than usual.  I wasn't terribly alarmed - I knew it would start coming out, but still, it didn't seem like that much.  I went into the bathroom where the light is much brighter, and ran my hair through my head - and out came about 25 hairs.  I grabbed a small section at the back of my head - and it came out.  It didn't hurt, it was just suddenly there, in my hair.  I started to panic a little, and pulled on some hair on the front of my head - and out it fell.  In the sink are a hundred or so hairs, and I stare in the mirror, suddenly horrified. 

My hair is taking its leave.

So I slap on a hat, get ready for work, and like a pregnant woman whose water has just broken, I announce simply to my husband, "Honey, it's time."  And like a good partner who has been waiting for this very moment for weeks, he knows what to do - he buys a new pair of clippers.

After work, we light the fire and light some candles, and set up a small salon in the living room.  My son Michael offers to be our supportive and gentle Official Buzz Cut Paparazzi.  I can see now that my hair really was thinning, in ways I probably wasn't terribly aware.  Oh, and here's my awesome Personal Barber, aka my best friend and partner, Ken:

 

Apparently, what little is left on my head is (as always) thicker than I realize.  We have to make two passes with the clippers:

Kisses on the forehead leave a little hair in the mouth, but they're totally worth it:

 

I have plenty of cool new scarfs to rock, as well as the hats I've been collecting along the way:

All in all - it was a truly a good and blessed evening.

Bus Stop Blues

Today was number 2 of the four planned AC treatments.  My sister Mary spent the night last night and we had a pajama party, so she could come with me to my 7:15 am appointment. 

Last night around 11:00 I woke from a dead sleep and realized I had changed my mind and decided I wasn't going to do this treatment.  Nope, don't wanna go, ya can't make me.  Every time I go for a treatment, I make an active choice - it really is up to me.  I can go, or not go.  And I wasn't going to go.

I didn't want to because I had started to feel human again this week, and I didn't want to feel unhuman again.  It never fails:  We don't realize how awful we feel until we start to feel better again.  I had gone through the entire first week thinking, "I'm a frickin' rock star!!!" and I was so frickin' wrong.   Every day, slowly, I was feeling worse - taste buds rebelling, hair starting to thin, a cold that felt like the flu, aches and pains, exhaustion. intestinal fun and games.  Individually, they weren't bad; together, they were draining me.  About Day 9, I started to feel really good.  On Day 10, I was alive and feeling normal again!  And on Day 14 - I was going to walk back into the chemo center and choose to do this again?  Oh hell no, I don't think so.

So the alarm goes off this morning, and I'm up and at 'em, and ready to go.  Because in the end, it's still my choice, and while I am not looking forward to feeling like shit again, this is part of my journey.

Mary brings the camera and volunteers to be my Official Chemo Artistic Director.  When we get to the Center, the lab technician comes out and says, "I'm looking for a cheeseburger" and turns around and walks away.

It takes me a moment to realize he's calling me back (for some reason people think the burger/Berger  jokes are funny).  Michael (I checked his nametag!) insists on some fun pre-treatment screening, like asking for my weight (dose is determined by weight so it's the one time in my life I'm happy to get on a scale), my BP and temp (all really good/below normal), and then pokes my finger for a blood count:

We then meet up with Laurie, the clinical trials coordinator, who talks with me for a while about the last two weeks.  She shares with me that everything I've experienced is normal (I suppose I should be thankful for that, but it sucks that this is normal), and that my iron, ANC (absolute neutrophil count), red-blood cell counts are well within normal ranges.  So, I'm good to go for treatment today.

After meeting with the nurse-practitioner who checks my lungs (and gives me a pep talk about the importance of social workers in the oncology unit and that "we UM staff" are really pushing for more SWers so that nurses don't have to do double-duty in helping patients and that I might want to consider doing my MSW internship there...), Mary and I walk down to the infusion center.  I am in Chair 4 today, facing the outside courtyard (my chair is in the front right of the photo).

A little disclaimer:  Some of the following photos show my port, my infusion, and some of the drugs that are being used.  Please skip past if you want/need to.

I put on my slippers, sit in my recliner, and open my shirt (yes, I keep my clothes on; I do not have to change into a hospital gown.  It helps lessen the "clinical" aspect of it all and makes it so much easier physically and mentally).  But I still start to cry like a baby, and the nurse is so kind.  Mary hugs and kisses me, and I gather my strength and stop myself.  Let's get this party started!  The nurse opens the needle and asks me to sit back in the chair...

Ready...

Set...

 GO!

And with very minimal pain (and a reflexive kick to my poor sister's shin), my port is accessed and ready for use.

(The red is "flash" which is good; it means that the port is open and flowing and that blood is accessible - in other words, the port is working, not clogged or kinked, and ready to be used).

Time to snuggle down in the prayer shawl and fleecy blanket that Ken's coworkers so generously shared with me.  After some saline and anti-nausea meds, it's time for the Ativan (which makes me only slightly more loopy than usual).

Then we have more saline, the steroid (which lengthens the efficacy of the anti-nausea drugs), and finally, it's time:

(Note the protective gear that she is wearing, and the "!!Danger Will Robinson!!" sticker on the bag that holds the chemo drugs).

Meet my Red Devil:

This is the Adriamycin.  This is the first of the two chemo drugs administered during this phase of my treatment.  As I mentioned before, the syringe is comically large and filled with red Kool-aid - except it's not.  The nurse must wear protective gear to infuse it, and she lays a protective cover over me, just in case any spills.  Adria is a vesicant, which means it will cause tissue damage and blistering if it escapes from the vein.  This is why the nurse is constantly checking for "flash" while injecting this medication:  she pushes a little in, then pulls back slightly to ensure that the port is still accessed, it ain't broke, and stuff isn't leaking into my tissues.  In truth, I expect this medication to hurt; so far, it never has, and it isn't expected to.

Once the Adria is complete, we move on to the Cytoxan, a small, boring, clear liquid in a little bag hanging from my IV pole:

Half an hour (and a sinus headache - a SE of the Cytoxan) later, I'm beeping and we're done!  Quick flush with some Heparin (to keep the port from clogging), and the nurse pulls the needle out, revealing...nothing!  Not even a drop of blood this time.

A port is totally the way to go.

We pack up our belongings; I slip off my slippers and tie on my tennies.  I keep the prayer shawl on - for luck, for blessings, for warmth, for love.  Mary and I go out for breakfast (I figure 9-grain French toast is fairly safe) and shopping at Anna's, then the candle store.  Still feeling great, but starting to feel the beginnings of the emotional exhaustion.

So now it's naptime.  I sit at the bus stop, waiting for the next bus to arrive.  It could be tomorrow, it might be next week, I don't know.  I was warned today that this treatment will make me feel worse than the last - the SE's are cumulative over the course of treatments.  However, I am now half-way through my AC treatments - two down, two left to go!!  The Taxol treatments (the remaining 6 rounds of the 10 total) will have different SE's, maybe easier, maybe not.  I won't know until I get on that crosstown bus.

When I looked out the window today, I noticed a little sign on the sill.  In all the years of reading A.A. Milne I don't remember seeing this quote, but I found it the other day and had used it as my FB status.  Now here it was, sharing this space with me, and I found myself much more at peace.

Thank you for being with me today!