It's the Noise

I just had my third bone marrow biopsy this morning. I have been very lucky
so far in having people who are kind and sympathetic and very generous with
the lidocaine. It's not a fun procedure by any stretch of the imagination, but it
can be made so much worse if the person performing it does not have a gentle
touch.

There's only one real moment of pain during the biopsy and that's the ol'
"Take a deep breath and you will feel a zing" moment. Today, I did not feel
the zing and thought I got away easy. Nope.  The doc had to try again to get
the right spot. Zing! Damn.

But it's the second half of the proceedings that is the disturbing part. It does not
really hurt because they have numbed you up. But it's the marrow sample part.
It's the noise that is so bad. It sounds just like a corkscrew opening up a bottle
of wine. "Screech, screech, screech". Added to that is the fact that you can feel
the doc turning, turning, turning to get the core out. Screech! Pop! Bottle is open!
You may now enjoy your champagne!

Excuse me while I got put ice on my drink. I mean my hip. It hurts now after all of that
poking and probing. Salut!

Musical Beds

It's been a tough first week at home. I've adjusted to life outside the Penn fine.
But the Hubs has been terribly sick, starting on day 3 of my release. So I've been sleeping
in the guest room, which has helped keep me safe. Also, there has been a lot of surgical mask usage going on. And we have Purell and Lysol in practically every corner of the house.

But this sleeping in the guest room has confused the hell out of our pets. They just
got used to me being home and in the big king sized bed and now I am located down
the hall in a tiny twin.

The dog is especially upset. He likes to spread out. He has spent the time I was in the
hospital either with Mark in the king, or with Sophie, in her queen bed.  He jumped
up on my tiny bed, took a look around, got down and started whining. He has finally
settled on sleeping on the floor next to the bed, but he sighs all night long. He will
also run up and down the hall going from the king bed to the queen bed and then come
into the guest room and look sad.

Our cat, Pumpkin, never ever comes into the master bedroom to sleep with us. But he's
decided that the small twin bed is just right for him, and he hogs the entire bottom half
of the bed. And will not move. He's a moose of a cat and if he decides he wants to be
someplace, that's where he'll stay.

Poor Pippin is used to sleeping on my head on the big king sized pillow. I have a
standard sized pillow in the guest room and it's not big enough for her Royal
Highness. So she sleeps next to the pillow, which means when I turn over, I get a
mouth full of fur.

Max usually sleeps at the foot of my bed. This is so that if I get up sometime in the night,
he can mooch for treats. He's vigilant that way. But there is no way he will degrade himself
by staying on a tiny bed. So instead, he has parked himself in the hall right outside the guestroom door.
That way, if I get up in the middle of the night, he's ready for his handout. Did I mention that
he meows very loudly?

Hopefully the Hubs will be feeling better soon and I can return to my normally scheduled
bed. I just hope it does not confused the pets again!

Adjusting...

I am still adjusting to life at home. The house is very quiet. No nurse or doctor noises.
No dinging and cart rattling. Just quiet, with the occasional bark of the dog.

The kids are glad I'm home and have resorted to fighting with each other, which I
take to be a good thing. It means they feel comfortable.

The Hubs is getting on my nerves with his Tons of Questions. Again, this is actually a
good thing because he feels comfortable with my being home.

The pets are ecstatic that I'm here. They hang all over me all day long.

I desperately want to feel Normal. Except that
    1. I'm bald
    2. I have tubes sticking out of my arm
    3. Food tastes like metal

On a good note, I am banned from changing kitty litter for FOREVER!!!

By the time I get totally adjusted, it will be time to go back into the hospital. Then I get
to do this all over again. As long as it's part of my road to being well, I'm okay with that!

Homeward Bound

I got the surprising news this morning that I can go home!!

Today!!!

And while this thrills me, it also fills me with fear. There is a part of
me that does not want to leave yet. I'm safe here. If there is anything
odd going on, I only have to push the "Nurse" button and report it.
I am checked every 4 hours, round the clock.

What if I get a twinge when I'm home? I will have to use my own judgement.
I'm afraid of the germs out there, even though my immune system has
bounced back nicely and is almost normal. I'll be frightened of crowds and
sick people and just doing normal things like going to the grocery store.

But I've been deemed healthy enough to handle it. They have confidence that I
will know when a twinge is "phone call" worthy. That I can handle the germs
and the crowds and the grocery store.

It's a return to normal that is not quite normal. My life at home will be spent
recouperating and managing my health. This will mean at least one doctor's
appt in Philly a week. At least one home visit a week to change my picc line
dressing. Two visits a week to get labwork from me.

And the knowledge that I will return here in about a month for more chemo. So that
the leukemia can remain in remission until a donor match is found.

It's a scary world out there. I can't think too far in advance, but what I can do is be glad
that I will be returned to my home and to the people I love and to the pets that I love.
I can sleep in my own bed and eat my own food!

I will get used to managing my health. My world will be different than it was before I
was diagnosed, but it will be hopeful. I am determined to find a match and to kick this
Other, this parasite, in the ass and out of my life.

And going home is the first step in that direction.

A Day in the Life

So what is it like spending a month in the hospital? Especially being basically
confined to one room with the
occasional tour around the floor.

My days here are not as boring as I thought they would be. Mostly because
chemotherapy saps out a lot of energy.

My day starts bright and early.  I am woken up every morning at 5:30 for labs.
I have a handy picc line, which is a sort of a permanent line in my arm, so this
does not involve a prick. However, the lights need to be turned on. So by the time they
are done, it's 6am and I'm pretty much awake.

At 7am, the floor resident comes by to do a brief exam. I see him later during rounds, but
he checks vitals, breathing, heartrate, etc. He also likes Legos and Lord of the Rings so
sometimes we talk about that.

From 7 - 8am, TLC shows old episodes of What Not To Wear. Love seeing Stacy and Clinton
dress people, so this keeps me entertained.

Breakfast time!! I have finally found a good breakfast combo - cheese omelet, toast (always
cold), bran muffin, cream cheese (often warm) and fruit salad. It's the best I can do. Coffee
tastes terrible so I drink tea.

Then it's Med and Cream time! I take a ton of meds for various things, and have a very
nasty rash caused by one of the antibiotics. The rash is so large that one tube of cream only
lasts one day.

Now I do laps. I try to break up my laps into 4 or 5 groupings. Round and round.
 I wear my FitBit, and my goal here is 5000 steps a day,
which is a little over 2 miles. One of the docs informed me yesterday that it takes 17 laps to
do one mile. So this is a lot of walking.

By the time I'm done with laps, it's time for the docs to come with their rounds.  Luckily this
is usually brief. Everyone stares at the rash and agrees it's huge but might be looking better.

If I am scheduled to get any blood products, this is when I will find that out.

Now it's already lunchtime! Lunch has been very hit or miss. Right now, I'm doing okay
with grilled cheese and a LOT of ketchup.

By this time, I'll do more laps and then watch a movie or have visitors.

The rest of my day is either spent resting or eating or doing laps.

Sounds boring, but I make it work. I have a window in my room, and having the sunshine
come in makes for a nice break.

Real Life Superheros

As many of you know, I really like superheros. "Batman" was one of the first words
I  said. I have Wonder Woman as my facebook profile picture. Something about
superheros has always been appealing to me.

Now I need a real-life superhero. The way secondary AML leukemia (meaning the
leukemia you get from chemo) works is that is will not go away on its own. The docs
can put me in remission but I won't stay there.

My only hope for a cure is to get a bone marrow transplant. And to get that, I need a
bone marrow match. My two wonderful sisters have been tested, and it would be great
if one of them matched, but there is only a 25% chance of that.

In the meantime, if you or someone you know is between the ages of 18-44, you can
go to https://bethematch.org/ and see how you can register to be a donor.

Or if you are up in the Blue Bell, PA area, my synagogue is having a bone marrow
drive on Tuesday, February 21st. The info is here:

 TBI is having a Bone Marrow Registration Drive on Tuesday, February 21st from 3-7 pm. The address of TBI is 1920 Skippack Pike, Blue Bell, PA
In order to be a possible match, you have to be between the ages of 18-44. Please come out and get tested. You will be doing a wonderful mitzvah (good deed). Please pass the word along to your friends, students, teachers, and family.

For more information, contact Betty Kelly at 877-601-1926 Ext 7722.

Thanks for letting me get up on my soapbox! And I'll let everyone know as soon as a match is found!

The Return of LBH

It's really easy to pretend you do not have cancer when you still have your hair.
But the day has come to say goodbye to my hair. It was falling out like crazy so
I got my head shaved this morning. I am now living with Little Bald Head again. (LBH)

LBH is very cold. I don't know how people around here walk without covering their heads.
I have two main head covers - a bright knit watch cap that I made myself. And an awesome
Wonder Woman headscarf, thanks to my good friend, Mike Fineman.
 I don't go anywhere without having my head covered.

Plus - I look way too much like my dad with my head shaved.

In case you missed my LBH Rap from Facebook two years ago, I am reprising it:
Please feel free to drop a beat:
 
Little bald head, you are so cold
I'd show you to the world but I ain't that bold
I look in the mirror and I see my Dad
So I cover you up. And I still look rad!


 Imagine this guy with a crew cut. That's what I look like.

A Birthday for the Hubs

Today is the Hubs birthday. And it's a Saturday, so normally, we would be going out to a nice
restaurant and maybe doing something fun during the day with the kids.

This year is not normal. The Hubs didn't want to go out or do anything (I think he feels
guilty that I'm here) but I told him that he had top do something - it's his birthday after
all, so  he and the kids will come down to visit, and then the
three of them will join my mother-in-law for a lovely dinner in Philly.

I think it's the best way he can celebrate in this very odd year. He and I will have a nice
restaurant dinner when it's safe for me to leave the premises (hopefully only 2 more weeks!)

But knowing that milestones happen and life passes and I'm here waiting for my numbers
to get better can be frustrating. I'm trying not to let it get to me. But sometimes it just does.

This will be a year filled with patience and frustration for me. But I have to look at the end
goal: beating this thing and celebrating many many birthdays with the Hubs in the future.

The Grub

Eating hospital food for a week is one thing. Eating it for a month is a totally different
experience.

When I first got admitted, I insisted they put me on the Kosher menu. I only eat Kosher
meat but will order dairy and fish from regular menus. However, I thought it would be
nice to have some roast chicken from time to time.

Big Mistake. The kosher meals here are vile. Beyond vile. I tried. I tried several times.
Got the roast chicken. The spaghetti and meatballs. The turkey breast. The turkey in
particular had "stuffing" that came with it. It looked like a brown version of Sponge Bob
Squarepants. I have no idea what it was made of, but it wasn't stuffing.

So I then had to beg them to take me off of the kosher menu. Once I was ordering from
the regular menu, things perked up a bit.

I have the same two or three things for breakfast every day - eggs, rye toast, fresh fruit cup,
hot tea. The toast is usually cold but I can deal with that. It's relatively tasty.

Lunch has been a grilled cheese and lots and lots of ketchup. I keep trying to order side
dishes to go with it but they are all gross. Pasta salad - gloopy. Garden salad - insipid.
Cole slaw - needs salt. The soup is hit or miss.

For dinner, I have my MIL to thank once again. She brings me frozen spaghetti that she has
made, so I just have that. I also have some frozen macaroni and cheese that has been a good
stand in. The fridge in my room has become a lifeline for food.

I'm grateful for the pantry down the hall. There is always Cheerios or Rice Chex to fill in the
hungry times. I have a fridge in my room full of snacks.

And the big thing is that I'm not sure if the food is actually that bad or if it's just Chemo Mouth.
But still. Very grateful for those Cheerios!!

It Takes A Village

In addition to my team of doctors and nurses who keep me healthy while I
am in here, I am amazed by the amount of people who are employed by the
hospital whose job may seem insignifigant but with out that job this place would
not be the same.

There is the Floor Sweeper. He spends every morning getting the loose detrius
up off the floor. I passed him this morning and was shocked by how much stuff is
just out there.

There is the Restocker. This person comes into my room (and everyone's room) every
day to make sure there are enough rubber gloves and masks and alcohol wipes for my
safety.

The Fridge Guy - this is a volunteer who checks my fridge temp every day to make sure
that it's safe for me to keep food in there.

I have at least three different people in to clean the room every day. The top-to-bottom
girl, the bathroom person, the garbage collector. Sometimes I get an extra floor
sweeper too.

The Food Service People - they bring the good and not so good meals. But they are
always cheerful and feel bad if the food just does not taste right. 

The Pantry Restocker Guy - this is most important. There is a little pantry down the hall
where you can get coffee, tea, and snacks. The snacks are super important because sometimes
the food is terrible. Or just tastes terrible due to the chemo. There are frozen Stouffer's meals
in the freezer, water ice, ice cream, an assortment of juice and milk, and cereal. I have raided
this pantry many times at three in the morning.

The next time you have to go to the hospital for any thing at all (and I truly hope it's never)
just take a look around you. All of those people work hard to keep you healthy and safe.
Give them an wave and a smile and a thank you. It goes a long way to making someone's day!

The Gloaming

I have never been an evening enthusiast. For whatever reason, that period of the day
sometimes referred to as "the gloaming" is a dark place for me.

Here in the hospital, it's the worst time of day. I'm fatigued. There is no more sun, so the
room is gloomy. Dinner is usually done but it's too early to go to bed.

It's when the Looping starts - the Bad Thoughts.  For a period of about an hour or so, I feel
insecure and frightened.  I try to turn on the TV but this seldom helps. I will sometimes
walk the floor and do laps but everyone else's rooms are darkening too.

I would freak out about this more, but even on an ordinary Summer's day, the gloaming can
put me in a mood. I'm a Dawn person, not a Dusk person. Dawn fills me with happiness and
light. Dusk does not.

It's hard to know why I'm like this. It's hard to get past it. But, as with all passages of time,
the Gloaming does disappear each day into full nightfall. When it's fully dark, I can feel
cozy and safe again. I can gather my strength again to face another day.

Mr. Fancy Pants Man

One more resident in my neighborhood that I need to mention:

Mr. Fancy Pants Man. I have no idea who this guy is. But he has a double room
all to himself. He gets REAL linens on his bed - I saw the cart outside his room.
My pillowcases have HUP stamped in ink on them. His have the University of
Pennsylvania crest embroidered on them.

My towels can double as emery boards, they are so rough. His are soft and super
fluffy.

My blankets are hospital grade and you need about three of them to actually feel warm.
His were soft and thick and warm looking.

I also caught food services coming out of Mr. Fancy Pants Man's room. I did a double-take.
It was an actual cloth covered cart with a real silver dome over the food!!!!! And he had
some ice cream that involved a scoop, not a dixie cup!

I have actually seen Mr. Fancy Pants Man walking the corridors. He has an entourage.
He uses a walker. He has a spotter on the left side. A pole pusher on the right side.
Someone behind him pushing a wheelchair just in case. And then two suit-looking people
just striding along at the end of the parade.

He also wears silk striped pajamas that makes me think of Dan Akroyd's character in
Trading Places.

Wish I could tell you that I am sharing the floor with someone famous. But chances are I am
just sharing the floor with someone rich. Cancer does not really care if you are rich or poor.
But I'm glad that I have the same opportunity to get healthy as Mr. Fancy Pants Man. It also
does not matter if you are rich or poor when you kick cancer's butt.

The People in My Neighborhood

Here are some of the people that I encounter every day here on Rhoads 3. I am too
shy to ask anyone for names, or I see them either in their room when I am out of mine,
or they are in the hallway when I am in my room.

So I have given them my own names:

Brave Baldy - this is a young 20-something year old woman who does not wear any
head covering at all. She can often be seen in gym shorts and a tank top and sneakers
doing laps very early in the morning. She also has a very lively room with lots of friends
visiting.

The Cute Couple - I think there always must be one of these on the floor. The man is in
for treatment. I see them walk hand-in-hand round the floor.They eat their meals together.
I think she is here every day for almost all day long.

College Frat Boy - another young one. He wears a headband when he does his laps. Here's
a bit of  chemo trivia: without hair, the sweat or other body fluids have nowhere to go. Nose
will run, eyes will run. So I get the headband.

Plaid PJs Man - He also does early morning laps. Wears plaid pajamas, red slippers and a
red watch cap.

Harold Ramis - there is a guy at the way end of the hall who I swear is Harold Ramis.  I'm not about to ask him, though.

Then there is Tattoo Nurse. I like her. She had very cool forearm ink of Groot from Gardian
of the Galaxies.

The Dark Haired Nurse Group - there are enough nurses on this floor with long, brunette hair,
many of whom have names beginning with the letter "M", that they actually make fun of themselves.
"We all look the same - you can call us whatever you want"

The Cute Young Residents - these also look a bit alike. Early 20's and very earnest. Very
respectful to me. In fact, on my way up to the floor, I dragged my own suitcase up because I
did not want to wait an hour for someone to help me. I stopped in the hall at one point to rest,
and two of the docs were just coming off shift. They recognized me from the week before and
knew I was checking in. They took my bags and brought them to my room for me. Great guys.
I just have a hard time calling them "Dr. Jones" instead of "Hey, Tim!"

In the meantime, all of us patients try to get out of our room as much as possible.
Doing laps round and round the floor.  For some reason, though, I must be a British
"lapper".  I always pick the wrong direction and go against traffic. Figures!

Tilting the Lens

I have spent much of my life worrying about many useless things.
One thing that I worry about now is what kind of legacy am I making
for my kids? Will they look back at their childhood and just think, "Oh.
Mom was sick a lot".  Will this experience mar their lives much?  Will it
make them wish our life was more "normal"?

But then I think, what if I tilt the lens? What if I look at this from a different
angle. Like turning a prism until the light that comes out is not white, but rainbow.

Maybe, just maybe, instead of my children looking back and seeing an ill mother,
they will look back and see a warrior. Someone who faced some crappy news more
than once and did not crawl into a hole. Who came at it straight on and said, "It's
okay to be frightened, and it's okay to be angry, and it's okay to think this is totally
unfair. But let's figure out how to get through this". I think this is what I want them
to remember from this experience. How to deal with life when life just plain stinks.

And I hope that if I can continue to just tilt that lens a bit, I can continue to look
at the hopeful side of things.

My Inner Child

Remember the early 90's, when everyone was encouraged to get in touch with
their Inner Child in order to heal themselves. Am I dating myself too much?

Anyway - I have gotten in touch with my inner child. And guess what? She's
a screaming, temper-tantrum throwing 2-year-old brat. She will not stop hurling
herself on the ground and yelling "No! No! No!". She is Noodle-Girl, who turns
limp when it's time to get up off the floor. She is Stiff-As-Board girl when it's time
to get into the car seat.  She is really angry. She will not go down easy.

I think she is the voice of the people
I think I kinda need this gal.

Blindsided

The docs told me on Saturday that I would be sure to have some bad days.
I totally expected that. However, it was Saturday, and I was feeling great!
Walked over 6000 steps, climbed on the stepper, felt a-okay. Was even enjoying
the food! My bad days would come, but not yet!

Ah. The hubris of mankind.

About 4am Sunday morning, I woke up with chills and a 102.7 degree fever.
I had some sort of infection, causing anyone to visit me to gown and mask up.
In addition, my blood pressure had dropped to very low levels, causing the docs
to pump in more fluids. The extra fluid, combined with lack of movement, caused
pneumonia.

Well. If you are going to contract pneumonia, a hospital is a good place for that. It took
a few days, but I am now feeling much better - still getting lots of antibiotics, but the
fluid is out of my lungs, and I am actually eating a bit. Also puking a bit, but that's how
it goes around here.

I hope to get rid of the oxygen canula by tomorrow. And people can just visit as they are
without looking like extras on Grey's Anatomy.

So - lesson learned - when they tell you there will be bad days, expect them sooner than
later. But also know that the docs will do what they can to minimize the bad days. They
don't want me sick either.

I still don't have a ton of energy to answer everyone's emails or comments, but please know
that I read them all!!