Tuesday, May 16, 2017

Infusion 2 of 4: Hellraiser Returns

After the first infusion, I'd said I set the bar low.  If figured it I could just stay out of the hospital, this next infusion would be an improvement over the first one.

I take that all back.  I didn't end up in the hospital, but thanks to the injection I'm getting now which stimulate marrow growth and (hopefully) prevent the loss of almost all my white blood counts, in exchange for a hospital stay, I got two days of severe migraine headaches that made me want to put a gun to my head and pull the trigger.

Migraines run in my family.  I'd never had one before.  I hope to never have one again, but unfortunately, I have two more infusions to go through which will no doubt bring them back.  I am not looking forward to this.  I had 2nd my infusion last Thursday, it's now Tuesday (it is Tuesday, right?) and I'm only now just emerging from the fog.

This has all been made worse by the fact that Al is now sick, and the doctors have been taking samples trying to find out what's wrong.  We thought he'd caught one of the infections I came home with from my hospital stay, but that test came up negative.  Now, we are waiting for more test results.

So, pretty much since Saturday, this house has been a giant tomb of misery.  No one sleeps, no one eats.  We are all patients and no care-givers.

On the upside, I think I am beginning to come out of my fog, at least.  But I will tell you this:  Chemotherapy can NOT end soon enough.  And if I should ever be put in this situation again, I will not immediately agree to it.  It will be a very hard sell for the next oncologist. 

My only hope is there will never have to be such a thing as a "next time"!

Friday, May 12, 2017

A Slice Of Normal Life!

Oh what a glorious day, I got to go back to the pool, even though it's just for a few days.

You see, there are two things good about Infusion Day.  One, I get my blood work done, and yesterday I got the a-okay that all my counts were good, my immune system is strong, and for the next few days, at least, I am safe to operate as a normal human being.

Second, they put me on 3 days of steroids surrounding the infusion to prevent allergic reaction, and to generally hold back the worst of the side-effects.  If you've ever had reason to be on steroids, you will understand why athletes are drawn to them.  You feel pretty strong and invincible.  It's a short-lived high that leaves you with a big crash after, but when you're grasping for a little bit of feel-good normalcy, I'll take it!

So the first thing I did was get up early and get my butt to the pool!!  It was my first swim in 4 weeks and it felt WONDERFUL!  I was also blessed to meet up with two of my favorite swimming buddies, Diane and Jill, who were gracious enough to take a swim cap selfie with me to commemorate the occasion.

I am safe to go back in the pool tomorrow too, and maybe Sunday if I am up to it.  I plan to get the swims in while I can.  After that, I'm back in danger of my blood counts going down, so I will probably sit it out again until I know I'm in the clear. My doctor keeps telling me that, since the pool is chlorinated I shouldn't have to worry.  She knows how good it is for my mind and body and she encourages me to not stress so much about catching a bug in the water.  But after that hospital stint, I think I'd rather play it safe than sorry.

But ohhh was today wonderful.  The pool is my zen.  I love getting there early, before the sun comes up if I can because it's so calm and serene.  Today I was jumping in at an ungodly 5:20 a.m. (steroids also keep you amped up and awake).  But it was great.  I'd do it every day if I could consistently get up that early.

In the pool, I am thin and fit and in shape (a concept that always reminds me of Shelly Winters in the Poseidon Adventure, heh). Physically, it's a great workout for me because it's low impact, but it also forces heavy rhythmic breathing. My body gets a good dose of oxygen. Throw some music on my waterproof iPod and it's my favorite way to start my day.

Right now, I have a lot of upbeat music on my swim shuffle, happy "life is good" kinda music. It's a great reminder to me that even though I have been finding The Dark Side lately, life really IS worth this fight, and before I know it, I'll be able to enjoy many more of these simple pleasures I used to take for granted.

My swim song list, in case anyone is wondering:

Sunday, May 7, 2017

Voices From The Dark Side

All of this will be for nothing.  This cancer is going to come back, I'm sure of it.  I know this because, ever since I had that stupid mammogram back in November, 2016, not a solitary thing has gone my way.  They said, "Don't worry, we caught this early and it's teeny tiny small!"  As if that mattered one iota.  It didn't save me from chemo, and chemo has been The Shit.  Everything bad that could happen has happened.  So why expect a big shift now?  The radiation will go badly too.  Then the hormone pills will completely fuck me up.  They'll make me gain 50 lbs and I'll never sleep again thanks to heart palpitations and night sweats.  I'll be a sleepless, sweating, bloated alien with no body hair and one red boob.  And maybe, if I'm lucky, by Christmas 2017 I will have a short peek at what my old life was like before the next mammogram is due and they find a new spot.  Basically, my life has been summed up like this:  There was a good healthy confident life before the mammogram.  Now there is a shit life after.

These are the Voices from The Dark Side.  And they are nasty and mean.  On bad days, they even have me resenting my oncologist for trying to cure me.  Is she even competent?  Is she just making me do all this to rack up fees?  Is she getting kick-backs from all these pharmaceutical companies?

I really hate TDS.  It's destructive, it serves no purpose, and it creeps up on you when you least expect it.  It makes a hard time even more difficult than it has to be, and sucks the joy out of the day or night.

I'm fortunate that I don't go there very often, but staying away doesn't come easily.  I've had to distance myself from the negative--or just ill-witted--people who try to drag me in there with their doomsday comments.  The people who, for reasons I will never understand, seem to think I need to be told about all the bad cancer shit, instead of working to keep me focused on the positives.  (I promise that if you or a family member are ever diagnosed, you can talk to me because I will NEVER do that to you.)  Seriously, if there is ever a time in a person's life when they need to stay focused on the positives, this is it.  And it's a fucking hard thing to do.

And then on the flipside are the wonderful people who do keep it positive, who come around often and make sure I'm okay.  I torture those poor people, because I flip between needing to get out of the house and needing to stay home and decompress in solitude.  And that need changes day-by-day, hour-by-hour.  I don't expect anyone to anticipate my current mood, and will never fault any of them for getting it wrong.  I'm a hard person to figure out right now.

But what ultimately works against me is that I can so easily become a couch potato.  And now that I'm working fewer hours and have doctors telling me to rest, I could pretty easily get up in the morning, sit on the couch, eat almond milk ice cream, chips and guacamole and watch TV all day.  From early childhood, it was my tendency to lean in that direction (growing up in rainy Oregon helped).  But too much of that isolation sends me over to TDS.  So unless it's a day when I'm feeling physically bad, I'll have to stop that no matter how much the Itty Bitty Shitty Committee in my head tells me I have every right to sit and do nothing but watch TV and eat sugar. 

Because, of course, the best cure for TDS is to get up, move around, breath air and do something constructive with at least a good portion of the day.  That really is the answer.  You've got to stay busy enough that you don't have time to sit down for hours and start living in your own head.

From the time I took off work at 3:00 on Friday until the time I went to bed Saturday night, I couch potatoed for no good reason.  My stomach is feeling better, so I used it as an excuse to eat crap all day.  And what I got for it was a night of insomnia filled with Voices From The Dark Side.  It's why I'm up at 3:21 a.m. writing this post.  I had to get up and do something that would start me moving in the other direction.  The Voices want me to feel sorry for myself, be sad and depressed, but the rest of me can't tolerate that kind of existence.

So I'll start tomorrow with new rules designed to keep me out of TDS.  From now on, Couch Potatoing is for those crummy-feeling days when I physically can't do much more.  There will be enough of them in my future, so I don't have to worry about missing my favorite shows.

Days like this beautiful Saturday we just had, when my body is feeling good and the sun is shining, are not the days to sit around and be lazy.  Those are days to get out and go shopping, or get on my orange and white Cruiser (I call it my Creamcycle, heh) and go for a bike ride.  This last week I worked from home (more isolation=bad) but I'm back in the office on Monday and will be happy to be there.  I love my coworkers and enjoy being around people and talking about non-cancer things like work and hobbies and other people's lives.

It won't be easy because I really do like to sit around and be lazy and have the house to myself to do what I want.  Give me the option of sitting on the couch with ice cream or sitting on the weight machine in the garage pumping iron, the couch will win every time.  But I've got to muster the will to change that going forward, as the price I pay for it is too high.  I've got WAY too much more shit to go through to have my psyche derailed on me now.  I'll never get through it if I stay on this path.

So, sorry Itty Bitty Shitty Committee, but you will have to go back to your Sith Lord and tell them The Force is too strong with this one.  I've got my army of Jedi Knights and....well....you've seen the movies.  With the right plot, the good guys always win.

(Gosh, I guess I shoulda posted this on May the 4th. :) )

Sunday, April 30, 2017

Blueberry Pancakes From Mom

I went through a very difficult time in the weeks after my son was born.  He was a big baby, born the old fashioned way.  And as things worked out, we were sent home less than 24 hours after he was born, on two nights without sleep.  Neither grandma lived nearby, and we hadn't arranged to have family there to help right after the birth.  Our Lamaze teacher had told us that "we'd want this time alone with our child", and because we were naive, we believed her. We'd arranged to spend the first few weeks alone before any family came to stay with us.

That ended up being a very stupid move.

When my mom showed up three weeks later, I was exhausted, strung out, an emotional wreck and in need of rescue.  She took one look at me, told me to give her the baby and go to bed.  And I was happy to do it.  I woke up hours later to a happy baby boy, an organized house and a plan that would get me healthy again and prepared to care for a newborn.  To this day, I don't know what I would have done back then if my mother hadn't been there to pull us out of the deep hole we were drowning in.

Those days came back to me as I spent this last week in the hospital.  My first night there was spent on a gurney in the ER.  My second night there was--no joke--the most traumatic night of my life.  To avoid TMI I will just say it involved their need for stool and urine samples and the devices they gave me to carry that out.  It did not go well, and I ended up hysterical in my room surrounded by nurses and aides.  I was kept awake the third night by an IV machine that sounded off alarms so loud you'd think the country was being invaded.  They kept trying to fix it, then every 30 minutes it would go off again.  When the problem was finally solved and I was close to almost dozing off, an idiot orderly waltzed in to take my vitals and then proceed to chat me up like we were two guys in a bar getting to know each other over a beer.  He apparently didn't understand the concept that when you've literally shaken someone awake at 3:00 a.m. to take their blood pressure, they aren't real interested in hearing your life story. 

That was the night I started crying, and once I started, I couldn't stop.  I'd been sick for four days, traumatized by all the tests and samples.  I was repeatedly stabbed with needles, fed pills and sour liquids and chalky tablets.  I had a tube in my arm 24/7, hooked to a machine that sounded off alarms day and night.  I had no appetite and no sleep, and every day that went by, it only got worse.  I needed my mom again.  I needed her so bad, my heart ached.  I needed her to swoop in and fix all this just like she'd done 21 years ago.  To rescue me.  And through the exhaustion and darkness that is the dead of night, I'd never felt so desolate, alone, helpless and sad.

That following day, I ramped up my communication with the nursing staff.  I started telling them very clearly what was and wasn't working for me.  I told them I didn't want to see the chatty night kid, that it wasn't acceptable to have a nurse wake me up to give me a pill, then an hour later be woken up again to have my vital signs taken.  They needed to start putting some of these things together so I wasn't bugged all night.  I told them I was done giving samples unless they could come up with a better way.  And I wanted meds to help me sleep.

I didn't realize it at the time, but I was basically doing for myself everything my mother would have done had she been alive and there handling things for me.

I wasn't bitchy or rude.  My tone was I'm in trouble and I need you to help me fix this.  And the woman who was my night nurse that day responded.  Her name is Kelli and she is one of the head nurses in the cancer ward. Kelli changed around my night schedule, bundled things that could be done together, stretched some hours between meds, and talked to my doctors to adjust my plan.  She stopped all the "collection" that was going on, and came up with a way to make the real necessities bearable.  And thanks to her, that night I got six deep, blissful hours of uninterrupted sleep.  When I woke up the next morning, I not only felt rested and healed, but everything about the world and my situation seemed okay.

And then the blueberry pancakes came.

When I was little, our family vacations took the form of road trips, and the tradition was to get on the road early and stop for breakfast.  I would always order blueberry pancakes, and insist on having my very own stack.  My mom would try to get me to share a meal instead, but I had to have my own blueberry pancakes.  And, just like she knew I would, when the plate came, I would take about 4 bites and say I was full.

Blueberry pancakes were a running joke between me and my mom throughout my life.  So needless to say, when I opened the lid on my breakfast that morning and saw blueberry pancakes, I burst into tears.  Two nights before, I had cried and cried wishing she were there to help me through this.  And when I saw those pancakes, I realized she had come. And like I'd needed so badly, she'd rescued me.

I'm not a religious person.  I don't know if the spirits of our loved ones who have passed remain literally with us, or if they simply live on through us.  Maybe mom didn't rescue me, but I rescued myself through her example of how to handle life in crisis.  Maybe the whole thing was just a coincidence.  But my heart tells me it was more than that.  My heart tells me those pancakes were sent by my mom to let me know she was there, that we got everything fixed now, and that from here on out, I was going to be okay.

And in response, I ate my 4 bites and was full.  :)

Saturday, April 29, 2017

The Lessons We Learn From Major Life Events

My approach to chemotherapy was very much the same as my approach to being pregnant with my son.  The moment I got the news I was expecting, I read up on everything, made a plan, asked lots of questions.  I got myself educated and prepared, and went into it with a total "I Got This" attitude.  I won't call it arrogance.  I'm enough of a realist to know that things never go smoothly, that every major life event brings challenges, but I felt I was at least braced and ready to be a new mom. 

And then the baby came.  And I found out fast that--for me, at least--there really was no such thing as being ready for parenthood, much less controlling the outcome.

There's a connotation to the phrase "I Got This" that speaks to empowerment. That speaks to control.  But just as I learned when my son was born, some things won't be controlled.  And there are some things you can never fully prepare for.  My chemotherapy experience has been very much the same, just without all the cuteness and fun stuff that you get with a kid.

In this journey, I was not prepared for the loss of almost all my white blood cells after my first infusion.  The medical term is Neutropenia.  That opened the door for infection and what ended up being five very sick and horrible days in an isolation room at the hospital.  I've never been hospitalized before.  I hope I never am again.  All of it is bad.  All of it.

They told me the odds of developing Neutropenia were relatively small, and I felt my odds were even smaller in my case because--of course--I was the well-informed, model, sit-in-front-of-the-class chemo patient.  I did everything by the book, followed all doctors orders.  I was supposed to get something for that.  But just as I discovered after having my son, there's no guarantees no matter what you do, no matter how many books you read, or how many people you've gleaned experience from.  These are times in our lives when all bets are off and our only choice is to give it up and go with what life hands out.

I remember when my son started school and the teachers started wanting to talk about my very chatty child.  I eagerly jumped in with that "I got this!" champion team spirit.  Together with my husband and the teacher, we were going to nip this thing in the bud. Then over the years, the calls kept coming.  I'd given birth to a lovable-but-annoying class clown, and there was nothing anyone could do to fully change his personality.  Somewhere along that journey, my sparkly "I got this!" attitude converted to a sigh and an "Okay, just bring it" way of getting through it. 

After a week in the hospital, I'm now at that, "Okay, just bring it" stage of chemotherapy.

And really, this is not a bad thing.  Surrender does not always equal defeat, especially in this case.  I'm no less determined to see this though and come out strong.  But just like the days of getting my son through public school, I no longer think I have a majority stake in controlling how this will go.  And it's not a bad life lesson for someone like me.

My husband and I are control freaks.  It's 100% the reason our son is an only child.  We like everything in order.  We like a tidy house and clean cars.  We make plans.  We map out dinners days in advance and we expect time to ourselves to pursue our own personal hobbies. And because of that, we've never handled the unexpected very well.  We are the types who could use a little surrender in our lives.  Having a child forced us to adjust to life with a certain amount of chaos, and as a result, we became more laid back and less prone to sweating the small stuff.  This chemotherapy experience is taking that personal development and kicking it up a notch.

So thanks to this, I'm done spending energy fretting about what's to come.  Right now, my mind is in the present, where I intend to keep it.  I spent the bulk of the last 24 hours feeling pretty damn good.  Great even.  It's a gift I'll take, thankyouverymuch.  If tomorrow brings a set back, well...."Okay, just bring it".  Al and I will handle it and come out the other end.  And when this whole experience is past us, I hope to have developed an even stronger sense of what is important and what isn't.  Those are the gifts that will stay with us.

Wednesday, April 19, 2017

But I'm Not Lactose Intolerant

Well, Ms. Borrill, you is now!

Unfortunately, I had to find out the hard, very bad way, after a week of not really making the connection as to why I was feeling a little crummy after eating some things.

I read that chemotherapy messes with your digestive track.  In truth, it pretty much messes with everything, since it's the gardening equivalent of getting hooked up to an IV of Round-Up.  The idea is to "just kill everything" in the hope that cancer gets killed to.  And because I knew this, I knew to stay away from the obvious things like alcohol, fast food, anything overly spicy or fried.  Instead, I've been eating that "healthy, high fiber, balanced diet" that is the cure for everything.

Plus a lot of dairy.

Yesterday started out SOO good.  I went to the pool, had a great morning swim.  I got to work and, for the first time in a week, felt sharp and clear-headed.  Started cranking out some filings and other reports I needed to get off my desk.  I'd started the day with a great big banana peanut butter protein shake made with a cup of 1% milk.  I did notice some stomach problems, but didn't put 2 and 2 together as I went on to eat a lunch of cut fruit topped with greek yogurt and Grape Nuts (lots of dairy-topped fiber!).

By 3:00 I had the worst stomach cramps ever and couldn't get far enough away from the bathroom to even make the 15 minute drive home.  It was awful.  AWFUL!

When I was finally able to get home and in touch with the on-call doctor, I ran through my day and he informed me that chemo had given me lactose intolerance, and from here on out, dairy needs to be OFF my list.

Some might consider that a bummer.  (No melty cheese??)  But after yesterday, I'm just thrilled to have a quick diagnosis and a plan that will keep that from happening again.  I am still feeling the repercussions today, not quite as sharp, more tired, restless sleep.  But I am on the mend, and a day smarter.

On the upside, talking with a different doctor had an unintended bonus.  My own oncologist had led me to believe that each chemo infusion would get more difficult to deal with.  The symptoms get worse, the recovery takes longer.  When I mentioned that in passing to the oncologist on-call last night, he acted confused and said that wasn't the case.  In fact, it's usually the first infusion that's the hardest because nobody knows what side effects I will have (case in point: lactose intolerance), and by the time I have the next infusion, I've "figured it out" and don't end up with so many problems.  In his experience, most people have an easier time the farther they go.  He'd added that it's only fatigue that gets worse, but not all the other symptoms.

This was total news to me, and it caused me to rethink the conversation with my own doctor that led me to believe it would all be down hill from here.  Now that I think of it, she may have only been talking about fatigue getting worse.  I took it to mean everything.  I won't know for sure until I get there, but it's another example where even a bad spell can have a little silver lining.  I was really happy to hear this and definitely hope it's true! 

In the meantime, my son can go back to drinking milk straight from the carton, since we won't be sharing it anymore.  My weight is also trickling down, not because I'm dieting but because the chemo is forcing me to give up all the bad things that put on pounds.  So here is that!

Monday, April 17, 2017

Chopping off the Locks

Since my hair will start falling out any time now, I chose to take matters into my own hands and have the bulk of my hair cut off. Honestly, after the fatigue from this first round of chemo, I'm too tired to deal with my hair anyway.

What I did NOT know (because this is the shortest my hair has been since I was a toddler) is that the cowlick that makes my hair stick up in front goes all the way to the back. In fact, all my hair will stick straight up if you let it.

I was prepared for Rachel Maddow. I was NOT prepared for Don King!

But thanks to my wonderful long-time hair stylist Michelle (at Ferrari Salon in Cotati if you are looking for someone good), a little gel works miracles.  Thanks also to BFF Kathy Conant for going with me and holding my hand. Next step for my hair may be an all-out shave off, but at least this will get me going.