chemo #2: fin

broke my second cup today...
still feel pretty gunky
was in bed all day
but better than last time...
still not fun.

Chemo #2: too early to tell...

So, I'm strapped to the bag again...
a little different this time.
After last treatment's rollercoaster ups and crashing downs,
due to the pre-treatment of steroids,
we've changed the cocktail a bit this time around:
namely, we ditched the steroid.

Two weeks ago, at this time, I was feeling great... feeling like it was all cake,
and then the next morning, after a sleepless night, I was feeling like I was on speed.
Then of course, the crash came in the afternoon.

This time, I'm already feeling the glunk slurping into my body.  Feeling a little wobbly.
Just a little, a little fuzzy around the edges.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I've been back in my classroom OFFICIALLY since Monday,
although I unofficially put three days in last week.
It's a bit of a relief being there,
it's also a bit hard.  Tiring doing the work,
tiring being in public again, telling my story,
breaking the news to people who haven't heard yet,
or
being glad bumping into people who don't know, and being glad not telling them.
maintaining normalcy.

It will be a whole different animal putting out the energy to 29 kids.
We'll see what that's like soon enough.
I'm grateful to have a great class.

climbing is good

not sure where the energy or stamina came from,
but had a great climb yesterday...

ONE DOWN...

...in celebration:

TREATMENT NUMBER ONE: COMPLETE

At a few minutes before 2 this afternoon my poison pump started beeping.
This meant that my first treatment was over. Press stop, go to the doctor, unplug.
WHAT A RELIEF.

A quick recap, then nap.

Before administering the actual chemo on wednesday, they gave me a big dose of steroids.  They warned me it might give me a burst of energy right before bed.  It didn't. But at 1 am I was wide awake, and didn't go back to sleep. Felt kind of wired for most of yesterday.  Then around noon a giant safe fell off the building I was walking next to, and squished me into the sidewalk.

Actually, I was riding in the car.  But that's what it felt like.  I took a 2 hour nap.  When I woke up
I felt great again, cut out and sewed a replacement pump-bag, had dinner, watched a movie, then slept 12 hours.....

Upon waking, I felt like a chemo patient.  Groggy, tired.  Poisoned.  My whole body felt like
gunk.  Maya brought home the most delicious Portland style savory pastries.  I'm not sure where they came from, but I will certainly find out, because when I feel better, I will eat there every day.
Today, I took two bites, then had to go lay down on the couch. I had to ask my daughter to stop having fun, it was too loud. I went to lay down in the bedroom.

Going to the "disconnect appointment" perked me up again.  It was a relief to be finished, to have a nurse who didn't treat me like a mush-brain, to get unplugged.  Drank a protein shake, crashed again.

I tried to be out, and see people.  Maya had to drive me home.  To pooped.
I'm going to take a nap now.

Tonight, my big celebration, smashing tea cup #1.

Only 11 more times to go...

I can do this.

A LITTLE PROJECT

I have a little project I've been cooking up, and with the gracious and talented help of my brother-in-law (BIG UPS JUSTIN, WOOT!) I've been able to put it in motion:

Justin made me a series of twelve tea cups (actually he made like 39!!! and I got to choose the twelve I like best WOOT AGAIN!)...the tea cup long being a personal symbol in my work

as a rough stand in for the self... I've numbered the cups 1-12, and arranged them on a shelf. to begin the parade, I have a mason jar filled with an inch of lovely white Aruba sand. At the end of each treatment (there are 12. 12 treatments, 12 cups....eh?) I will enjoy a celebratory glass of whiskey from the appropriately-numbered cup, and THEN SMASH BLOODY HELL OUT OF IT IN THE MIDDLE OF THE STREET. yes! then I'll collect the debris and layer it in the mason jar on top of the sand. as treatments go by, the cups dwindle until the end, and the jar of rubble fills... my chemo-interactive-countdown-clock! I'm excited! ............................................................... chemo update: still this morning I feel fine... spent the morning so far in the clay studio... last night was weird: I woke up at 12:50 and never went back to sleep....no pain, no anxiety, no spinning head, just wide awake.... Maya says its the steroids they gave me before the actual chemo...

Chemo #1 or If This Were a Boxing Match, I'd Be Muhammad Ali

Let me just get this out of the way:

a little over a week ago, I went in for an MRI of my abdomen, and a CT scan of my chest.
The idea was to get a baseline for comparison throughout my treatment.
Well, that was the medical reason.  For me, and for just about any other person, non-medical,
the scans were to see if there were any little bad guys hanging out in my guts....

WELL,  I AM THRILLED AND RELIEVED TO REPORT THAT THERE WAS NOTHING.
nothing.... not even any hints of anything. no metastases, no cancer,  NOTHING.

phew.

okay, now that the GOOD news is out of the way, let's move on to the OTHER news...

ALSO GOOD.

I am currently in the midst of my first chemo treatment.
I will have a small pump in an ugly black nylon bag (I know some sea monsters who will have to remedy that...).  The pump is a small box, about the 6 inches long, with a little plastic cartridge filled with the chemo/poison attached to it.  (Today's favorite quote from my chemo-nurse [more on her later]: "If you get any of the chemo outside of the tube or the pump, make sure you put it in a plastic bag.  This is a caustic chemical, and is technically considered a toxic material."  AWESOME! as it is slowly being pumped into my body....)  From the pump comes 6 feet of narrow plastic tubing; finishing of the tubing is a needle that is poked in my shiny new port.  Big slab of plastic sticky tape covering the port, needle and smooth boy-chest.
Every two or three minutes, the pump makes a quiet motorized 'pumping' sound and tiny amount of poison is shoved into my jugular.  This will go on, day or night, for 46 hours.  Then, we take out the needle, clean the sight, possibly put a Hello Kitty (Fiona's favorite... thanks Ashley) bandaid over it, and hang out for two weeks.  Repeat.

The doctor's visit today was amazing, obviously,  with the good news.  The oncologist met, and visited with my parents, and then along comes the chemo-nurse, Maya's new favorite person (dripping sarcasm.)
OBVIOUSLY, this woman is used to having an audience of 87 year old grannies who's common sense went out of fashion with the poodle skirt, and who's idea of nutrition is shaved carrots in orange jello or anything with mayonnaise.  The nurse talked so slow, and spent about an hour walking us through a packet of information (WHICH I GOT TO TAKE HOME.....) at a snail's pace, spelling everything out like my native language was not English, highlighting every single line of type as she went along....

Some gems:
- have small aluminum cans of chocolate flavored protein shakes on hand in case you have decreased appetite.  maybe I would have as many as 6 to 8 a day

- "One thing that could happen is ...*in a whisper* constipation.  If that happens, drink warm prune juice. Has to be warm.  If that doesn't appeal, eat prunes, but warm them up."

- you need sodium. eat top ramen.

- you need to drink about 2 quarts of liquid a day.  coffee is an anti-liquid.  jello, ice cream and milkshakes count as liquids.

and it goes on and on...

anyway, several hours in now and I'm feeling great, no side effects so far.  having to lug this pump around is no fun, and my port is still a little tender, but other than that things are going smoothly... more updates tomorrow.

chemo tomorrow.

I start chemo tomorrow.

I don't really have any thoughts about it.
I really am a blank.
I'm not really nervous, or scared, or excited.


OH!! if in the past you have had trouble commenting on this blog,
please try again.  I've twiddled some settings that should help.

I can't tell you enough how much it helps me to know that I have so so so many people
out there sending me thoughts and support. seriously.

half man half machine

it was a really really long wait... I didn't go to surgery until 5:30 (I reported to the hospital at 10am...)
but everything was smooth.

In fact, it was like night and day compared to the last two surgeries.
First, I didn't need general anesthesia... which I've had a hard time coming out of in the past.
The surgical staff, and the surgeon himself, all great! Fun, and willing to talk, and explain, answer any questions..... The anesthesiologist, who brought me from my waiting room to the surgery room invited
Fiona to hop up on the wheely-bed and go along for the ride, that was very special for her....

I had the option to dictate and choose the level of "sleepiness" I wanted during the surgery, and could adjust
it at any point.  I opted for the lightest sleepiness, only because I was curious about the surgery...
The surgeon gave me a blow by blow report on the surgery (my head was covered with a wire and cloth tent).  All told, the surgery took about 30 minutes, and an hour after that, I was able to go home.

So now I have a "Smart Port".  This is very different than I imagined.  Of course, in my mind, I was picturing
the opening to my car's gas tank, a big opening, a twist off cap..... but it turns out that there is nothing on the outside of my body, it's completely under the skin!  It's a small metal (titanium... oooooh) donut about the size of a nickle, with a silicone filling in the middle.  From this comes a small tube that goes to my jugular vein.  To administer my medication (poison) you stick an IV needle (more or less) thru my skin into the silicone plug, which then feeds directly into my vein... pretty nice. Once the surgery heals, I'll have a 1 inch scar, and a small bump under the skin. cool.

I had literally no side effects from this surgery, other than some soreness today.  We went for a hike.

I guess the one side effect is this crazy new chest-hairdo that I have... and the fact that I'm part robot.

... which I'm hoping has perks.

the Waiting Game

as if arriving at the hospital 3 hours before your surgery actually takes place isn't bad enough....

that's the normal schedule

but

I'm now two hours behind schedule.
sitting in a hospital gown for FIVE HOURS stewing
waiting to get sliced open and have a chunk of metal and plastic sewn under my skin...
not my idea of a good time.

some things I'd rather be doing:

eating and drinking (haven't done either since midnight)
sleeping
reading my book in the back yard
climbing
sewing a new bag for someone

anything but this

if there's one thing that's going to get me through chemo...

...I mean beyond the obvious:
my wonderful wife,
and my wonderful child,
and my wonderful family, near and far
and my wonderful friends,

besides all those things,
if there's one thing that's going to get me through chemo it's rock climbing.

the last time I climbed was the last week of May. and at that time I was making some real progress.

but in the last two months,
on top of two major surgeries,
just the time away,
I lost a lot of strength
and stamina.

so...I went climbing tonight.
and I absolutely rocked it (pun intended)
IT WAS GREAT
big adrenaline

and I did much better than I thought I would. in fact, much much better.

so I'm looking forward to getting myself back up to speed.
the climbing is going to really help.

Some images from the healing, relaxing, strengthening Aruba vacation

Some pictures....

family on the beach

bigger family on the beach

playing on the beach (sense a theme?)

coconut drums...

break from the beach.... hit the pool

animal rescue zoo, Fiona Cloud and the goats

more goats

mmmmmm... fresh coconut water

tasty, and refreshing

dancing to the smooth Caribbean stylings ...

view from the dinner table

Mariachi Band!

Fiona is officially 3/5 fish, confirmed on this trip

family under water

enjoying sun and surf

FORWARD MOTION

saw the oncologist today.
we set the plan in motion.

in two days (wed, aug 8) I go in for an MRI and CT scan,
to get a base line. I will have scans every few months for a while.

one week from today (mon, aug 13), I will have my third surgery of the summer to install the port

and on Aug 15, I will have my first treatment.

It feels good to have a plan in place, and official start dates,

but it's also a little unsettling: here we go.

At the visit, I got to see the "chemo room".

And I was pleasantly surprised and encouraged.  It wasn't a room full of miserable sick people

getting pumped full of poison, like I had pictured.  It was a bright sunny room, full of big comfy chairs,

patients and family members cheerily chatting away. That felt very good. 

READY

I've been in Aruba for a week now.
We leave in the morning.
A month ago, when we first talked about doing chemo, we decided to wait until
after this trip: get me rested and relaxed, give my stomach time to heal (it's healed, HEALED! completely closed... swimming in the ocean nearly every day WORKS MIRACLES)
The point was to get me strong again before the chemo started.

Well, I'm strong again.

This trip has done everything we had hoped it would do for me, and more.
I'm ready.

A month ago, when we set an oncology appt. for Aug 6, to get the chemo ball rolling, to schedule the surgery to install the port etc.
it felt like a million years away..."yeah, sure, I'll start chemo in a million years... no problem."

Well, that's in two days.
it's  a nights sleep, a breakfast, an airplane ride, a night in a hotel in Orlando, another airplane ride, and a night's sleep away.
and all this starts up again.

almost felt like I had woken from the dream.......................

not a dream, is it. I start chemo, probably  within the week.
It's about to start hoppin' around here...