Meet Ivy

It's great to finally be home!! However, it will be a good while yet
before my life returns to "normal". And the family is adjusting to me
not doing all of the things I took care of before - laundry, cleaning, cooking,
driving them places. I think I am having a harder time adjusting than
they are.

One of the biggest changes for me is that I am still hooked up to an IV at
home. Meet Ivy - my new, petite little pole and tiny pump. She's smaller
than Diana, my huge pole in the hospital, but it's good for home.

I have to get IV Magnesium for at least a month. The transfusion takes four hours.

So for 4 hours every day, I am attached to my pole and pump. I can make it
down the one stair into the family room, where I normally nap during transfusion
time. But I can't go upstairs or outside while hooked up. This will take some
planning on my part. Do I need anything upstairs? Have I showered? Gotten dressed?
Do I have everything I might want for the next 4 hours? Is the dog walked?

It's not too bad overall. Little Ivy makes a little bit noise but it is not so much that I cannot
nap.

So when you come to visit me, just don't be alarmed that there is an Ivy next to me. She's
harmless!

Home

This morning, I woke up in my own bed. In my own house.
With my own family.

I almost thought I was going to be kept an extra day or two. I had
an upset stomach and wanted some medicine to make it feel better.
Because upset stomachs are one of the kinds of Graft Vs. Host disease
(more on that later) I had to take a test before they could approve
the medicine. This was in the middle of the night. I awoke to find
Warning! signs all over my door. People had to gown up again. Instant
panic from me. Luckily, the test results came back early and came
back negative.

I was released from the hospital yesterday afternoon and did not
even mind the rainy rush hour drive home.

The dog was so excited to see me that he ended up pooping on our nice
newly cleaned carpets.

I had a wonderful evening of just sitting on the couch with my lovies and
watching TV. Don't ever underestimate the simple things in life!

Leaving the hospital, I felt a bit like Richard Gere at the end
of Officer and a Gentleman. After enduring his grueling training
with the Air Force, he was on his way out, when he passed a
bunch of new recruits getting the same hassles his group had. The
circle just continues. I know that my room will be cleaned by tomorrow
and filled with another patient soon therafter. Another life saved.
The circle continues.

Touch

It's been over 22 days since I had touched or been touched by another
human being. Three weeks and counting. It was for my safety, but it
can be hard as a mother to see your children and know you can't hug them
or hold their hand. It's hard as a wife to just wave to your husband from
across the room.

Last night, I got to be "re-contaminated" with my world. The Hubs brought the
kids down to see me after dinner. I got to hug each of them. I got to hold
their hands. I got to touch their faces.

As humans, touch is one of the first senses to develop. Babies need touch to thrive.
A touch can be comforting. To let you know you are not alone.

To be denied that touch is to emphasize that what you are going through is your journey
alone. And a lonely journey that can be at times. I am not good at being alone. I crave
people. I crave company. Being in this room for a month was hard, not just physically,
but psychically.

I think that it is rather fitting that when your bloodcount numbers come up to the point
that you are safer, you get a reward - touching those you love. I cannot think of a
better way to celebrate.

Three Hots and a Cot

Three Hots and a Cot. That's what criminals call prison.
Where I am now is sort-of a prison. It's not knicknamed "The Penn"
for nothing. I have begun to have sympathy with those criminals who
are in solitary confinement. They are looking at months, years in a room or
cell. I am faced with only a number of weeks and it gets to me. And like
many criminals (perhaps) - I often spend my time here wishing that what went
wrong did not go wrong. "If only"... But here I am, so now it's time to talk
about the food!

My three hots here are very hit-or-miss.
The kitchen cannot seem to deliver the food on time, nor
can they get the orders correct. I have ordered oatmeal and brown sugar for breakfast
only to receive brown sugar. I got hot tea that was really only a cup of hot water.  Today
I got the tea bag, but no water. I got have gotten a few sausage tossed on my plate.
I don't eat pork, so that ruined my meal.

They call me the "Breadstick Lady" when the Food Services people come by to
see how things are going. There are breadsticks on the menu, but I am never
able to actually order them. On the rare occasion that someone figures out the computer
and can send me a breadstick, it is either on a plate by itself (but still tasty) or in a bag
on the tray all dried out and stale. Now I order them just to bug the kitchen staff.

My fabulous mother-in-law, Charlotte, is the only one who is allowed to bring me food, because
she has been to the food prep class with me, and I trust her to follow all food-safe procedures.
So I have spaghetti from her, and some Stouffer's mac-n-cheese to tide me over for dinner.

My cot is not too bad. I have a pillow from home, and the bed is made every day with nice,
fresh sheets. It raises and lowers however I want. Now, if I could only get through the
night without all the interuptions.

While being in here is  similar to prison on many levels, I don't have mean,
angry neighbors or wardens who scare me.
Instead, I have a great staff of support people who will help me get through this.
The nurses, aides, and other people deserve a huge shout out. They help make this journey
tolerable. They even laugh with me about how bad the "3 hots" are. I'll be getting out soon,
and be moving on to the next phase of life. But my time in the "joint" has molded me and left
an impression I won't soon forget.

Mask-erade Part II

Thank you for all of your suggestions. I have implemented some of them.
Others were just too hard for my limited talents.

So without further ado, I present Mask-erade, Part II.

The Animals:

Kitty Cat

Oink! Oink!

The Unicorn

  The People:

Santa Claus

Help Me, Obi-Wan Kenobi! You're my only hope!

Argh!!! Captain Hook! With earring!

Count Dracula

Clown

Honest Abe

Albert Einstein

Marie Antoinette

Homesick

Today is Day 15. It is Wallow Day. I have been in the hospital 23 days now.
I have about 15 more to go.

And I am homesick.

I miss my kids.
I miss the Hubs.
I miss my pets and all of the noise they make.
I miss my house and my couch and my own bed.
I miss sleeping without being woken up 3 times a night for someone to jab at me.
I miss the cacophany that comes with living with 3 other people.

And I miss being outdoors. Spring has come and it is now hot, and I have not
been outside to experience any of it.

I would like food that tastes good.
And I would like to see the inside of more than one room every day.
I would like to give my family and friends a big hug and not have it
be separated by gowns and gloves.
I want to walk around without Diana, my trusty pole, following me everywhere.

Today is Day 15. Wallow Day.

Tomorrow will be Day 16 and will be one step closer to getting out of here and coming
home. 

The Big Picture

Somewhere in my upbringing, I got the message that pain meds were
a bad thing. That pain was something to be endured quietly. Grin and
bear it. Stiff upper lip. All of that nonsense.

So this weekend, I made what was a very difficult decision for me:
to go on a pain med pump. That will give me meds whenever I need
them.

In making this decision I had to sit back, get away from my head, and
look at the Big Picture:

1. Being in constant pain is demoralizing, hard on your body and just stupid
2. The meds make me sleepy. Sleeping right now is the best thing for me
3. The meds allow me to eat. Eating will help me heal and recover
4. I'm on Day 13. Pain should only last until Day 18. I can do this for a few days!

I have a job for all of you! You can be little cheerleaders for Brenda's Bone Marrow.
The sooner it takes over, the sooner my pain will end.

Bricka Bracka Firecracker!
Sis Boom Bah!
Bone Marrow! Bone Marrow!
Rah! Rah! Rah!

The Doldrums

The Doldrums: maritime term indicating a low-pressure area around the
equator where the prevailing winds are calm. The doldrums are also noted
for calm periods when the winds disappear altogether, trapping sail-powered
boats for periods of days or weeks.

So this is where I am - the doldrums. For the next 10 days or so, my white
cell blood count will be at zero. My platelets will bounce around close to zero.
And I will have a sore throat.

It is the mother of all sore throats. It's got a lovely name: "Mucusitis". I wonder who won
that infliction-naming contest. Even with the crummy moniker, it it a really bad sore
throat. In my esophogus, so that everything I swallow is terribly painful.

It is the result of the chemotherapy  destroying the mucus membranes in my mouth and my
lack of immune system to do any fighting. So I sit around waiting for that wind to kick up
and get me out of the doldrums. That will happen in about 10 days (ish) when my sister's
bone marrow decides to get cozy and make a home.

Of course, that will bring with it it's own host of problems. But I am just taking one day
at a time. Rinsing with lidocaine and taking oxycodone helps a bit. As long as I can keep
eating, I'm ahead of the game.

It also helps to know this is exactly where my ship should be at this point. Sitting in still waters
just waiting.

Mask-erade party

I have to be honest. Being stuck inside the same room every single day
is very boring. I decided to entertain myself by making Mask creations.
I am no artist. I am a stick-figurer, so please give me some license. I began
with just some funny faces and then moved on to portraits. I will tell you
who I am supposed to be because my art is really bad and my resources are
even worse.

Funny Mustache 

 

The Fu-Manchu

Bucky McBucktooth

Girl with a Pearl Earring

Mona Lisa - That is a far-off look of mystery

Vincent Van Gogh Self Portrait.

Frida Kahlo - I ripped off some eyebrow hair taking the fake eyebrows!

Let me know if you have any ideas for faces/portraits and I will do my best to comply!

Creatures of the Night

After the sun goes down, we creep out of our rooms. Yellow gowns. Yellow masks.
Purple gloved creatures pushing poles down the halls.

Some might call us Vampires. Sneaking out after dark. After the halls are empty.
Confined by our situation, we roam after everyone else leaves.

However, I prefer to think of us as candles.
Beating back the cancer with our yellow and purple flames.
Knowing that each step we take around the floor
is one less step for the Disease. We are the transplants.
We will be the survivors. We will
march out cancer with our feet and with our sheer will.
It is impossible for this disease to win when we shine our light out
there.

Sometimes I walk at 8:00pm on the dot. Antsy for the clock to move. Anxious
to get out of my room, even if it's just for 10 or 20 minutes. Sometimes I
walk in the middle of the night. 3am. 5am. Anytime I can't sleep, I suit up and
go out there. I know the exercise helps the bone marrow get to where it needs
to go. I also know I can nap during the day, which I often do.

I will shed my light as long as I am able. I expect to have several days where I just
cannot go out there. But I know other candles will be there to light up the night
in my stead, and this is enough.

Garden Party May 21st

I would like to extend an official invitation out there to anyone wishing to help
plant a garden of flowers on May 21st from 3 - 5pm.

We've created a sign-up to hopefully make things easier. The Hubs has informed
me that munchies, soda and pizza will be served. If you go, please take some picture
to send me!!

Hello! You have been invited by Mark Style to sign up for "Planting Flowers for Carin May 21st." Please click on the button below to view the online sign up sheet. Sign Up

Transplant Dos and Don'ts

I have a list of restrictions about a mile long that I thought I would share.
The list is a bit daunting. Just a warning!

While in the hospital I must:

- Stay in my room until 8pm. When I do leave to do some laps, I must wear
a gown, gloves, and a mask. If I need to leave before 8pm, too bad for me.
- Wear gloves anytime I touch paper products. This includes: reading, coloring, looking
at food menu, doing legos (paper instruction sheet)
- All clothing washed in hot water and partitioned into outfits, each outfit put in a ziploc
bag. Each outfit may be worn once and then needs to be washed again.
- Personal blanket needs to be washed once a week
- If I were the kind of person to have a personal stuffed animal, that buddy would have to
be washed once a week while a poser stood in for the real one.
- I have to use really yucky soap called "Hibiclens" that stinks and dries out your skin
but is bad for germs
- All items brought into the room need to be wiped down with antibacterial wipes
- I am not allowed to wear any makeup. This horrifies me the most
- No deodorant unless it's provided by the hospital.
- I have to brush my teeth with some really disgusting toothpaste and have an oral hygene
routine that's pretty gross but the idea is to reduce mouthsores so I'll so it.
-I need to exercise every day. I have a stationary bike in my room for this. It's a Swedish bike.
All instructions are in Swedish. I love this.
- I may have visistors, and LOVE visitors!! There is a yellow station right outside my room
full of gowns to suit up in, and rubber gloves. No mask is necessary unless someone has a cold.
Visitors are often the only people other than nurses that I get to see all day so I would love if you came out to see me!


Once I come home - rules for 1st 100 days (about mid-August)
- I can sit with my pets but cannot sleep with them.
- My bedding, including comfortor, must be washed once a week in hot water. To this
end, I will be sleeping in the guest room twin bed, which will be easier to maintain than the
king-sized bed. Also, easier to keep the pets out of the guest room.
- The  "NO" list:
       - NO Cooking
       - NO Cleaning
       - NO Laundry
       - NO Driving
       - NO Restaurant or outside food :-(
The No Driving is going to be the hardest. I have been assured that I will be too tired to care.
We'll see...
- A whole lot of vacuuming and house cleaning must be done, but not by me.
- Again, I will be able to have visistors at home, and will welcome them. I will be
allowed to leave the house, ut on small outings at first, and will have to wear a
mask for a while. but I can alsoqualify to drive those electric shopping
store carts. I'm rather psyched for that!

There are other rules to follow, but the binder is in the corner, and the gloves are across
the room, and I am too lazy to get the gloves and then go get the binder. This is just a
sampling to see what needs to be entailed to ensure post-procedure health.

How to help:
I will not be able to eat any outside food. However, my hubs and kids can, and would
appreciate a meal. You can sign up from the following link:

 www.TakeThemAMeal.com and enter the last name ‘Style’ and password 4175 to sign up on the schedule.



       

Song of LBH (Little Bald Head)

Little Bald Head (LBH) is quite confused and has written a song about it.
Taken from the Clash's melody -

Should I stay or should I grow now?
Should I stay or should I grow now?
If I stay I will be colder!
If I grow I will look older
So come on and let me know...

Okay - we can pause for a few minutes for you to go thank the universe that I
did not pursue my dream career of songwriting...

But LBH is truly very confused. I don't think it knows that I just got a pile of more chemo.
Instead, it has tried to rebel, and is growing funny short hair all over. I should be
calling it LFH for Little Fuzzy Head. And it's very odd hair. Not new regrowth but rather
it's the hair that never fell out that has decided to grow. I have about 1/3 inch growth hair
in sparse places, and no hair in others. It's quite disconcerting.

But not to worry! By next week, I expect LBH to be back to being bald and not fuzzy. I'm
actually looking forward to this, because it will be my last hair loss. From that point on, I
can just count on real hair growing back. It will take a few months, but I cannot wait to have
a head that does not look like a plucked chicken!

Happy Re-Birthday

Today is my new birthday!!! In about 5 hours, I will be receiving my sister's
bone marrow. That will be a bit after 4pm, which, ironically, is the actual time
I was born in August many years ago.

My sister, Brenda, just finished up in the OR. She did great and is now in
recovery, and the anti-nausea meds they gave her seem to be working.
She'll be moved up to a room soon.

My other sister, Colleen, is the family cheerleader, and is doing a wonderful
job. She had the job of driving down here with Brenda in the wee hours of the
morning and is the designated family member for the docs to report to.

I cannot even begin to express my thanks to these amazing women.
They are both so strong and supportive and I so glad I have them by my
side today.

I  had a vivid dream about my Mom last night. I truly believe she is here with
us. And last night, before I fell asleep, I heard something really strange:
a boys choir singing. It was probably just my imagination. However, my father sang in a
boys choir when he was growing up. I feel that he is here with us as well.

Today is Day 0! I'm ready for the rest of my life to begin.