Really bald photo

Took this on Easter morning, I think.  It's about as bald as it gets!

April 24--Second chemo slightly less terrifying

We’re into the second round of chemo now, and this time it’s slightly less scary, since we know a little of the lay of the land.  My sense of taste is pretty much gone again. But the first time that happened, it was terrifying—I didn’t know when or if it would come back.  It came back in about a week.  I know that now.

I’m learning how to manage the war room of my brain.  The ebb and flow of all the drugs and hours is quite complicated, but I am finding patterns in it now, and learning to roll with them.

For example, the first week I did chemo, I was ambushed at 4am on Sunday morning by a killer migraine.  Now, I’ve been getting migraines since I was 14 years old.  I’ve never had one wake me up before.  I dreamed I couldn’t see.  I woke up.  I couldn’t see.  I get migraines “with aura,” which means blinking lights and visual disturbances that arrive before the actual pain.  This time, it was crazy.  Fireworks were going off across my whole field of vision, and I couldn’t get them to stop, eyes open, eyes closed.

I woke John up, cursing.

“*&^^%$ migraine,” I swore.  “What do I do?”

I started going through my neat, military list of all the things that could be causing me a migraine right then.  It was a long list.  Was my blood pressure up?  Was I stroking out?

Was it the stupid ovaries?  I was told the chemo could shut them down overnight.

“Ovaries?  Come in, ovaries, do you read?”

Nothing?

“Ovaries, you there?  Jesus Christ.”

“Ovaries, here, ma’am, you want us to start another period again?  But we just did that a week ago,” they whined.

“At ease,”  I shouted to them.  Stupid ovaries.

Was the Benadryl I was taking for my allergy to the Taxotere crashing into the stuff I was taking for the pain from the Neulasta?  Or maybe this WAS the pain from the Neulasta, and I should have gotten that prescription for the Vicodin after all?

Then a small voice, a lowly staff sergeant, whispers in my ear that I’ve been too sick to drink much coffee for two or three days…Could this be a caffeine-management issue?  Just wondering?

“John, I need coffee.”  It is 4:15 am and John is visibly relieved to have something concrete he can do to help me.  He makes me some strong French roast Starbucks. 

By 5 am the migraine is gone.  I get to church by 9:30 am, pain-free, in time to hear Julia’s bell choir play.  I’ve learned a little about listening to the old body.  Now, the second round of chemo is easier.  If I want French roast at 4am, I get it.  No questions asked.

April 22--Yesterday's chemo went well

The chemo yesterday seems to have gone very well.  My blood counts were all looking great, which explains why I’ve been feeling so good.  My, there were other folks in there who were not in as good a place, believe me.

All reporters are notorious eavesdroppers, and of course, we are all sitting there in one big sunny room in our Barcaloungers with our IV drips. It’s hard not to get into other peoples’ business.

One woman sitting near me was looking excellent, dressed like a Washington lobbyist, hair perfect.  She was on the phone, lying through her teeth to her boss.  She was “working from home.”  She said she didn’t dare tell him what she was really up do, because it would be perceived as weakness and she would lose her good clients.  My goodness.  What a millstone to have around your neck at such a time.

I turned out to have a pretty nasty allergic reaction to my Taxotere again, so they had to slow my IV drip way down.  In the end, I was one of two dawdlers left in the room at 5pm.  I had hoped to be out of there by 3pm.  The other woman and I had a race to see who could down their last IV bag first.  I won!  The prize was a drink.  But I’m not allowed to drink on chemo day, so supposedly my nurse got to have a snort after I left.  I hope so.  She’d earned it!  But then, so had me and my new friend…

Glass grizzly?

People are asking me why I call this the Glass Grizzly blog.  Nothing too symbolic there, really.  It's not supposed to mean that I feel brittle or fragile like glass, or any such thing.

Basically, I used to have an Etsy store (on online craft/art site Etsy.com) to sell jewelry.  I may do that again some time.  The name came from the fact that I'm a Grizzly (University of Montana graduate) and I make things out of glass.  It sort of stuck.

Other names I actually been called the last two weeks include:  Terminator; Mominator; Arnold (do I perceive a theme here?); Warrior Queen; shero; and my own personal favorite, Captain Badass!  I also find myself answering to Baldy, and soon, I suspect, Cue Ball!  Glass Grizzly doesn't sound too bad now, does it?

Photo of the Day--April 20

I'm cheating today!  I'm wearing my hat!  You can see how bald I am tomorrow.

Photo of the Day--April 19

Wow, look at how much hair I've lost in two days!  This is interesting, if freaky.

Photo of the Day

Well, that's not fair

We literally took the vacuum cleaner to my head last night.  The hair is going fast, and it's itchy. As soon as I find my camera I'll put up a picture of my nearly-bald head. The blue mohawk lasted exactly one day, which was enough to puzzle the ladies at Blob's Park, the German dance hall where we went polka-ing on Friday night.  But the mohawk was unraveling, and hair was falling out in clumps, so I had John buzz it off on Saturday morning.  Now, there's nothing between me and baldness but a little fuzz, and an excellent new cowboy hat.

I bought it this week, in Laurel, of all places.  I was trying to channel the ghost of a hat that my dear friend, Dave, gave me when I moved to England some 27 years ago.  That hat continually amazed and impressed my British friends. It got got me kissed on more than one New Year's Eve. Eventually someone stole it from a storage locker while I was moving.  That was a sad day.  But this new hat has potential.  Why did I wait 27 years before I bought a new cowboy hat?  My new motto is:  Do it now.  Someday is today.

I am still feeling great!  I did three miles on an elliptical machine at the gym today, along with my weights.  I am very happy to report that the fuzzy-headedness from the first chemo treatment lasted less than a week.  I did not have any trouble remembering how to walk on a treadmill today, as I did those first few days. And my sense of taste, which nearly disappeared there for a while, is back, for now, at least. I dominated in our duckpin bowling on Friday. I commented to my friend, Lalitha, who is a medical doctor, that they'll need to put an asterisk next to my name in the duckpin books, because I owe it all to the steroids.

She burst my bubble.

"Oh, no, you're taking the other kind of steroids," she said.

What?  I had thought I was taking Barry-Bonds type steroids, only more badass.  But it turns out, that although I'm taking badass steroids, they're a different kind.  He takes performance-enhancing, anabolic steroids.  I'm taking non-performance-enhancing, corticosteroids.

"So I'm not going to get ripped?  Become fierce at bowling and softball and such?"

"No," she says, adding that I might become psychotic, though. Then she tries to cheer me up by pointing out this means my unusually good bowling performance was not chemically induced.  It was all me.

When my own doctor first mentioned the steroids, he said they would be one of the things that could  mess up my stomach.  One of many. He painted a sort of grim picture about how my stomach was going to feel during chemotherapy in general, which lasts until some time in July.

I tried to see the bright side.  I said, "Well, if I don't feel like eating between now and July, at least I might lose the 20 pounds my regular doctor has been telling me to lose."

"What makes you think that?" he asks.

"Well, you just told me, I'm not going to feel like eating anything until some time in July. Surely, I'll lose some weight?"

"Oh, no," he says, surprised.  "We're going to pump you so full of steroids that you could gain 20 or 30 pounds if you're not careful.  You're really going to have to watch what you eat, and exercise a lot, get that metabolism going.  Go to the gym almost every day, or at least go for a long walk, or you'll just balloon."

I cursed at that point, which he seemed to enjoy.

Not only am I not going to get ripped, and I'm not going to become a power hitter. I'm going to feel sick until some time in July, but I'm still going to get fat? That's not fair.

None if it is, really.

Photo of the Day

Hair was really falling out in clumps today, so we did the deed.  Going to spend one day as a punk.  Now it's time to "be beautiful on the inside" for a few months.  Yippee.

Mail call

No medical news to report.  Still have (some) hair, still feeling great!  Acquiring some awesome hats.  I have no chemo until a week from tomorrow.  So for now I thought I would share how much fun it has been recently to pick up the mail.  If there has been one good thing about this, it has been reconnecting with people.  Regular life in all its suburban busy-ness has taken a toll on some of my friendships, including one with a dear friend from college who lives 7 miles from here and whom I have seen once in two years, just because we both got busy.  Well, I'm seeing her now and it is wonderful.

Another friend, whom I lost via a divorce, contacted me and said events have made it patently clear to her that life is too short for such nonsense.  A friendship recovered!

I can't begin to share the notes and cards I've gotten, and some of them are personal in any case.  But here is a smattering of goodies from care packages that have arrived at my door in the last while:

Two really lovely books

Two really tasty lasagnas

Some purty-smelling bath items!

And a care package from Steve in Montana featuring huckleberry chocolates, huckleberry syrup, huckleberry gummy bears, huckleberry jam, and...wait for it...huckleberry vodka!  I did not even know that last item existed, but I am here to tell you it is a fine invention.  I am so blessed with love.  Thanks, guys!

Like myself, but on steroids

Just to let everyone know, felt just great today!  I don't know if it's just you feel so good once you stop feeling bad, or maybe these steroids are really mind-altering.  But I felt great.  The hair is really starting to come out now, though.  Baldness beckons!

Good day today!

Felt almost normal today!  It feels great!  Good to see everyone at church this morning, and everyone else who visited today!

Short hair day

They told me that some time after chemo started, I would run my hands through my hair, and would find my hair coming out in my fingers.  That day was today.  My plan was:  on that day, I would go down to Amys of Denmark (a real place in Wheaton, not a porn theater).  They would bob my hair and take it to make a "halo" wig, which would make it look like I still had hair peeking out from whatever hat I might choose to wear.  I also ordered a regular, garden-variety wig, and bought a couple of hats.

As fate would have it, my daughter, Julia, who is almost 14, was home sick from school today with a sore throat.  I waited until she woke up and said we had a new project of the day.  She was all over it.

We got down to Amys of Denmark in the central wig district of Wheaton, behind the IHOP.  Who knew that there was a wig district in Wheaton?

The ladies, who are not Danish but mostly Hispanic, do this all day, every day.  They could tell me what do do with my health insurance.  I had a prescription for a "cranial prosthesis," that is, a wig, and now my health insurance will pay for it.  Canada, who has the best health care system NOW, eh?

They tried to talk me out of getting my hair cut today.  They said I had at least three or four days of hair left.  I said the hell with that, I was there, my wingman was there with camera in hand, and we were ready to roll.  Julia brought a backpack loaded with hats of many kinds. for me to try on to get the best idea of what was possible, and what was not advisable.

This is the haircut that resulted.  I kind of like it, but by week's end I will probably be totally bald.  It is a fun look to try for today, and for now, I am in the moment.

We got back to the car, and Julia presented me with a box.  Inside was a hand-colored bandana reading, "BALD MOMS FOR THE CURE," and on top were two life-affirming Lindor eggs.  I have the best daughter in the world.

When we got home, and I picked up Matthew for his piano lesson, he took one look, said, "You look creepy!" and burst into tears.  But smart mom that I am, I let him try on my wig.  He had a blast terrifying his siblings and dad.  He is possibly enjoying it a little too much.  That's okay for today.  I am, too.

Not a good night

After feeling so well yesterday, woke up at 3am feeling very unwell.  They said this would happen...I am finding some satisfaction in imagining the same thing happening to all those cancer cells as is happening apparently to the good ones!

One pill makes you larger, and one pill makes you small

Today is the first day I don’t have to take any drugs I don’t personally feel like taking! That doesn’t sound very Methodist, or very Quakerly, does it?  It has gotten interesting trying to figure out which drugs are causing which side effects, and which ones are worth the trouble.

                It is like this is a military campaign, and I am only maybe a sergeant or thereabouts, and I’m in way over my head.  We are chasing Al Qaeda operatives through the landscape—but the landscape is me!  The command center is somewhere in my tired brain.  Or maybe it is in a ritzy doctor’s office somewhere in Chevy Chase, with racks of helpful pamphlets, and a basket of flavorless ginger snaps.  We know where their base camp is.  But we’re not taking it out yet.  We’ve infiltrated it. We’re intercepting their cell phone calls and following the coming and going of their money.  What we’re worried about is not the base camp, but those lone-wolf operatives out there on their own, causing mischief somewhere in the lungs or bones.

                So we are poisoning these bastards’ food supply, among other things.  The oncology nurse showed me two tubes of red stuff they had to shoot into me.  It was too red, redder than the frosting on a birthday cake from Giant.  She had to sit there and push it through my vein, she said, because it was so caustic that, if any of it leaked from the portal into the flesh, it would cause a burn so bad we would need a plastic surgeon to fix it.  I must really trust that woman, because I let her do it.  Fortunately she warned me it would also make me pee red tempera paint—a warning that saved one unnecessary trip to the E.R.  Daunting to watch that stuff flow into me, but as they say, fear concentrates the mind wonderfully.

                My nurse also warned me that the $8,000 shot they gave me to keep my immune system going has a few side effects of its own.  Basically, it riles up the bone marrow to get moving.  Turns out, this is intensely painful.  Who knew?  She told me this after the fact.  She said when it started hurting, I could call any time and ask for Vicodin or whatever, and they would say, “Yes, ma’am!  How much?”  She said it would take a few days before this happened.

                It happened last night. I couldn’t sleep, and I thought it was because I was trying to not take the anti-nausea medication.  That one makes me wacky, in a bad sort of way, so that I have to really concentrate hard and hold on with two hands just to walk on a treadmill I’ve been using for four years. I would rather have my stomach hurt.  But it turns out, it wasn’t my stomach, at all.  It was my breastbone, about to crack open.  Followed by my knees.  So it’s time to call that oncology nurse and head back to CVS.  We are about to start sampling different pain drugs, to see which ones make me least wacky, or if wacky is unavoidable, at least wacky in the best possible way.

April 5 Photo of the Day

Hi!  Still doing very well.  Haven't put a photo of the day up because basically nothing has changed.  I am putting one up today because my face is no longer bright red like I've drunk two bottles of wine.  This is because I'm through the first phase of death steroids.  Looking fairly average.  Still have hair!  Thanks for all the good wishes.  It has been going so well relatively, that it frightens me.

First chemo went fine

Hi!  Just wanted to give a quick update that the first chemo seems to have gone as well as it possibly could have gone.  I had my chemo on Thursday, a shot of Neulasta on Friday, and now it's Saturday evening.  I am feeling very sleepy, but that's about it.

I had been dreading the nausea and vomiting I had heard so much about.  But on Thursday, my oncology nurse told me that while everyone gets queasy at some point, if I end up vomiting they have failed in their medication plan.  Thus far, we have not failed!  The anti-nausea meds make me very sleepy, and I suspect possibly wacky, but otherwise not much to report.  I went to Matthew's soccer game this morning.  I walked a couple miles yesterday and a couple miles today.  Last night I went out for BBQ with my friends--that is amazing to me--and we had a great time.  I just wanted you to know I'm getting on well.   I am sure this gets worse over time, with cumulative effects setting in, but for now, so far, so good.  Thanks for all the love and prayers!

Insurance ridiculousness, part 1

I can't complain, because I am the one with great health insurance, so I will get my medicine one way or the other.  But I can't help but marvel at the silliness.  I need to take a certain injection the day after each chemo treatment.  The injection will keep my immune system working properly.  Yay!  It is available in a self-injectible form, almost like an epi-pen.  I can totally handle that.  But the insurance wants me to drive one hour each way to the chemotherapy parlor in Chevy Chase and have them do it.  The apprarent holdup:  each injection costs $8,000.  I guess they really don't want me to screw up--or is it that Aetna really wants a bigger cut than they'd get otherwise? Hmmm.

What do people without insurance in this country DO?  They end up in the ER, that's what.