2017 Review

 Okay - this is a lie. I actually cannot review 2017. At all.
There is just too much there that I don't want to think about.
Too much happened. Too many dark places to go. Or not go.

So instead I am going to focus on something that came to me the
other day as I sat in the infusion chair getting platelets.
(Update on my platelet issue - the prednisone is not doing what it is
supposed to. That's actually okay. It means two things - one is that I
will be receiving a different, hopefully successful treatment in two weeks.
The second thing is that I will then be weaned off the pred. Hooray!)

What I realized is that the real heroes of this past year have been all of you out there
that have done so many random acts of kindness for others.

Anyone of you who has donated blood, platelets, swabbed a cheek for
the bone marrow bank - thank you! Not only have you kept me alive and
going, but you have helped so many other people out there. And what
I think is most amazing is that most of you did this without knowing who it
would help. Or in what circumstances. It was giving of some of your own
life sources to help someone else in need. That is an amazing thing. The fact
that today's science can do that is also an amazing thing.

2017 has really beaten me to the ground. I am too nervous, anxious, scared, frightened,
etc to have any resolutions for 2018. I do know that I have a bar mitzvah to plan. I
intend to be there and have a great time. 

 But the bottom line is, I could never have survived 2017 without every single one of you -
whether you just read this blog, or gave me a hug, or a phone call, or an email, or just prayed for me. If you donated blood or platelets or your bone marrow. I am here because of you.

You are all my heroes.

The Dreaded Pred

One of the big risks for bone marrow transplants is something called
Graft Vs Host Disease (GVHD for short). I have mentioned it before.
It's a host of all kinds of terrible things that can go wrong - your body
basically attacking your body.

I have been very very lucky so far - I have some mild GVHD in my gut, which
has been controlled by a special steroid that is only absorbed through the
digestive system and does not have those Bad Steroid Effects.

Until now.

In October, my docs started weaning me off of my immunosuppressant drug.
One of the jobs of that drug was to keep GVHD in check. I have been waiting
for something to happen. A rash. Bigger stomach aches. Liver issues.

Instead, I have been watching my platelet count go slowly, slowly down. To the point
where I am now critical. Hooray. I am full of bruises and bleed easily.

The docs are pretty sure it is something called ITP. It has a long latiny name which
basically translates to "Your new bone marrow is making platelets. AND your new
bone marrow is looking at those platelets and is thinking they are foreign and is
attacking them". Well. Isn't that a lovely thing?

Good news - there is a cure. Actually, there are three types of treatments. But the first
and easiest is to go on Predisone. Yuck. Not my drug of choice. I told the doctor that
it makes me psycotic and anxious. I'm already taking some medication for anxiety.
We are trying it anyway since it is usually a pretty quick fix. The point is to reset the
system and calm down the bone marrow so that it sees that platetets are Good Things.
Not Bad Things.

The other two treatment options are infusions - one of immunoglobins and the other a
type of chemotherapy that is often used for auto-immune disease. I am hoping I don't
need either one of those because. Well, just because. I don't want an infusion. I don't
want to sit in the "chemo chair".

It's a bump. A relatively small bump in the grand scheme of things. But it does mean that
I will be keeping my PICC line a bit longer than I thought. I was hoping to get rid of it
in a few weeks but it will have to stay while they make sure everything returns to normal.

So if I seem snippier than normal, or more anxious and crazy than normal, just blame
it on the pred. In fact, I may not tell anyone when I come off of it, and use that as an
excuse from now on!

Untethered

I have had some huge milestones as of late!

I took my last immuno-suppresant medication last Monday. On the
same day, I also had my very last session with Ivy. Not only was it
the last infusion, the actual IV pole is now out of the house. They
picked it up and it's gone.

This makes me very happy. But it is also terribly frightening. It's another
step in feeling "normal" and being independent. However, I have been
closely watched and monitored and poked and prodded since January.
Now, I get fewer blood tests. There is talk, albeit brief, of removing the
PICC line. I get my first vaccines on Monday.

The docs and nurses are getting me ready to be on my own. Well, as much
on my own as my situation allows. And I'm in a panic. Untethered from my
IV, free floating in the world where germs exist, and unknowns exist. But
life is out here too.

I'm flapping about trying to get my bearings. But I think there is a safe place
when I land. I am hoping so.
Like a bird learning how to fly, I am being pushed from my nest. I will learn
to use my wings. I will learn how to trust living.

Surviving November

It is the best of months. It is the worst of months. November is coming.
I used to love November. Now, I'm not so sure.

The difficulty with November actually starts today, which is still October.
Today is the 18th anniversary of my father's death. It has been 18 years
since he passed. That is as long as it took him to raise me from an infant
to an adult. For some reason, this number is extremely sobering. It's a
very measurable length of time. After this lifetime of years, I still miss him.
I think he would have enjoyed my kids. I know he would have enjoyed his
retirement years. He was not a man to sit still. Ever. Always a trip planned. Or
something interesting to do - teaching, even though he was already a retired
principal; delivering flowers for the local florist just because it was fun; meeting
his friends for breakfast. He was even busy on the day he died, processing stamps
(he was a stamp dealer on the side) and watching sports on his tiny TV. His death
is very connected to November because the month is just barely into it's groove
when it's another Dad anniversary - his
birthday was November 2nd. I always thought it was a shame that he died before
he turned 61. Wish he could have held on just a few more days to get to his
birthday.

I just get over my dad's birthday when November 6th comes around. This was my
mother's birthday. And, to make it especially tough, it was also the day she found out
that her leukemia came back. First of all, her doctors had her birthdate all over her
charts. Couldn't they have let her enjoy her birthday and let her know the next day? This
still makes my blood boil. Secondly, I just got a bone marrow biopsy. The results will
be in before November 6th, but I just have an extra layer of anxiety. We were both
diagnosed with AML in January. Yes, I had a bone marrow transplant, and she did not
have that luck. Our diseases are not exactly the same. My health is not her health (keep
repeating that to myself), but the anxiety exists all the same.

More November Gloom: on November 21st, 3 years ago, I got a phone call from my good friend, Andrew, that completely changed my life - a routine CT scan showed that I had a mass
in my chest cavity. Which started this crazy merry go round journey that I am still on.

And lastly, I had a day last November when, for whatever reason, out of the complete
blue, I had a massive anxiety attack. So bad that I took a xanax and went to bed.
In the middle of the day. Something I don't ever do.
I asked my current oncologist when their best guess was of when my bone marrow went
awry. They really can't give an answer but probably in November. And apparently,
leukemia can send out receptors to the brain that can cause anxiety. Was this the day
things turned? I'll never know but it adds to the weight of November.

But here's the good stuff - November is the month the Hubs and I got married. And thanks
to my excellent doctors, my family, my sisters, my friends, my community, and
anyone else I may have forgotten, I am around to celebrate with him. And I totally
appreciate each and every anniversary we spend together. And I plan to be around for
many, many more.

November is also the month of my favorite holiday - Thanksgiving. What is better than
a day when you come together with those you love to eat and give thanks. Not much.
I plan my menu for months. I plan my table setting even longer. I do my best to make it an
Event every year.

And this year, I will do my best to try to minimize the anxiety that comes rolling in with
the new month, and to focus on what I'm thankful for. This list this year is too large to
even put into words. But please know that I am thankful for every one of you that has been
with me and my family throughout this harrowing journey. I'm still here. I will be here
for a long time. Thanks to all of you.

Mascara

I love putting on mascara. Since I've been allowed to use makeup again,
it's my favorite thing to do. Brush, brush, brush. Ahhh!

It reminds me every time that I actually have eyelashes again! This is no small
feat. Losing one's body hair is a very strange thing. It's not just the head that's
difficult. It's everything. No arm hair means you will be cold. No nose hair means
you will have a constantly runny nose. No eyelashes means your eyes will water.
No eyebrows mean that you look kinda funny.

I find it very interesting to see what order the body grows hair again. My head
seems to be the least important. Eyebrows come first. I guess in human evolution,
eyebrows must be very important for individual recognition. I watched my eyebrows
carefully each day to see when they would resume their place on my face. Once I saw
they were growing, I knew that my body was starting to recover.

The hair on my head is now long enough for me to have crazy hat-head when I remove
my wig or my chemo cap. It was an unsightly salt and pepper color that bugged me, so
I decided to color it. I was a bit stumped at the store, and ended up with a color called "Ash Brown".
It should have been called "Muddy Water". Maybe because this is new-growth hair, or
maybe because I didn't do it right, my hair looks like I dunked it in a pail of nasty water.
The color is not terribly attractive and didn't take evenly. So I'll be continuing to wear
a wig or hat until it grows long enough for me to haul myself to the salon to get it done correctly.

In other news - I am now 100% grafted!! That means that my sister's bone marrow has
completely taken over.  There is no bone marrow in my body that has my DNA. Weird, huh?
The doctors get this information from something called a Chimera test. Here's the
official definition of Chimera: (in Greek mythology) a fire-breathing female monster with a lion's head, a goat's body, and a serpent's tail. I think that's pretty fitting!!

And Ivy and I are only speaking to each other three days a week. Yay!
She has been good to me but I don't mind taking a break from her.

Every restricted lifted is a gift. Every milestone is a miracle. These days, I just
take one day at a time, and appreciate all the little stuff.

Celebrate the little things in your life! Find your own personal mascara and rejoice!

Too Much Food

Most of my food restrictions have been lifted. Which is a wonderful
thing. Except now I am in the Land of Choices. And I get stumped as
to What to Eat. For lunch, do I go out? Do I have Chinese? Do I have
pizza? Do I stay home and have a bagel? Eggs? The choices seem endless
and sometimes it's hard. And what do I make for dinner now that I can cook?

Seems silly - deciding what to eat. But after months of frozen food, this is
where I am.  Having too many choices about food.

Which got me to thinking. This Friday starts the most well known Jewish Fast Day,
Yom Kippur.  We fast and atone for sins committed in the past year.
I'm not going to dwell too much on my sins this year, because I've had
such a difficult year overall, I just can't bring myself to sit there and wonder where
I went wrong. I think G-d will understand. And I cannot fast
anymore, although I did when I was younger. However, I do eat more spartan meals.

But as I sit, I do a lot of thinking about communities near us and far away who do not have
the food choice dilema that I am now facing. Who wonder when their next meal will
be. And after so many disasters in September - Houston, Mexico, Florida, Puerto Rico,
I know there are a lot of folks out there that are thinking about their next meal and how
to get it.

So I would encourage you, next time you look in your fridge and see so much food, to
give a thought to those around us, some of whom are in your town, who do not have
enough food. Contact your local food bank, a food bank in one of the areas recently
affected by disaster, a reliable charity. See if you can make a difference to someone's
life.

I know that this year, as I ponder my own situation, I hope that I will be able to help out
as many people as I can in the coming year. I think it's a good goal to have. To repair the
world, even if it's just a little bit.

Lost

Cancer treatment is hard, as too many people know. Infusions every few weeks.
Radiation. The fatigue. The foggy brain. The loss of appetite.

But when I was undergoing treatment for Non-Hodgkins Lymphoma, I was still
able to work. To volunteer. To garden. To sew and cook and be a mom.
I planned my daughter's Bat Mitzvah in the middle
of undergoing treatment. My last chemo infusion was just days before the big
event.

I was able to be "me" throughout the entire ordeal.

Treatment for Leukemia is another whole ball of wax.

Since being diagnosed in January, I have had to quit my job. Quit all volunteer activities.
During my long hospital stays, I had to hand over all mom-related activies to the Hubs
and other wonderful volunteers. I have had to rely on the kindness of other people to
keep my family fed. I have not had the energy to call or email or text friends.

I have had to give up everything, even temporarily, in order to pare down to my
core being.

Because that's how you get the strength to beat this thing. You have to let go of
everything that defines you in order to reach in deep so that you can overcome.
So that you can some day pick up the pieces again.

And that's where I am now. Trying to pick up the pieces. Out in the scary world of germs.
It's harder than I thought. I am still dealing with fatigue, both mental and physical. I
am still hooked up to Ivy for 2 hours a day. I am still a long way from "normal".

I am trying to find the energy to find out who I am.  Am I a cancer survivor? A cancer
patient? A transplant patient? A regular Mom who carpools and does all of that other
Mom stuff? A wife who can go out to dinner and a movie? Someone who can relax
and enjoy life? All of the above? None of the above?

I feel a bit lost right now. Just trying to get my feet back under me. Being allowed to
go out in public helps.  Believe it or not, wearing makeup helps. I feel less like a
patient with some lipstick on. The drudgery that is being a modern housewife now
gives me some joy. But I'm still not sure who I am anymore.

I'll feel like me sooner than later. But bear with me while I find myself again.
It may take a while. That's one thing I have learned throughout this ordeal.
Patience is King. Patience and perseverance. And I will persevere.

Pizza!!

I have just passed 100 days post transplant! Had a doctor's appointment
this afternoon that included the obligatory bone marrow biopsy. But
more importantly, I got several restrictions lifted.

I can eat real pizzaria pizza!!

I can also go out to restaurants (but no salad yet and no sushi yet either).
I can wear makeup!
I can go out without my mask and gloves.
I can go down into the basement (this means I can sew)
I can do laundry (meh)

I can't yet clean the house, which I'm crying over (ha ha). 
And no gardening yet either. But one step
at a time.

Hooray for me!

Pierce to Vent

I am getting very close to the end of my 100 days super restriction period.
It has gone well, overall, despite some stomach and breathing issues, which
seem to have been fixed with medication.

The one thing that has remained very difficult for me is the food. I cannot have
any food from outside the house - no restaurants, takeout, or home-cooked
deliveries. I can have frozen food like Stouffers Mac and Cheese and whatever
I can find from Trader Joes.

I am getting just a little bit tired of all of my food requiring me to "Pierce
to Vent" before inserting into the microwave oven.

The other day, we got a pizza delivered. Some of the cheese had slid off the
pizza into the corner of the box. It took all of my willpower not to scoop up
that cheese and pop it into my mouth. I want a real pizza. I want to go out
to dinner with the Hubs. I want to actually cook a meal myself.

As for cooking, the Hubs cooks sometimes. And Eli has been grilling for me. I can
have home-cooked food as long as it's made in my home. So maybe once a week
or so, I have some non-frozen food to eat.

Why all the hullabaloo over the food? Stomach issues are very common in post-transplant
patients. And my immune system is still recovering. If you add in food that is not
tightly controlled, you make things harder for the doctors to diagnose.

I have been very good about my food, and my stomach issues were still hard to diagnose.
I think I am now getting the right medicine, but if I were eating whatever I wanted,
I would only cloudy the waters.

There are many days where I feel like King Richard the Third: "A pizza! A pizza! My
kingdom for a pizza!".

Soon. Very soon.

Flower Garden

It's mid-July. My flower garden is blooming!  And I can see it from the deck.
You have no idea how happy I am to look outside and see these flowers.
And, as you can see, the butterflies like the flowers too. I did not get close enough
to see if the bees are also enjoying all of this beauty, but I'm sure they are. A bit later
in the season, the goldfinches will eat the cosmos seeds and a large variety of birds
will consume the sunflower seeds. The hummingbirds like the red geraniums on
the deck. So, happy me all around! Thank you again to everyone who made this
possible. It's the gift that keeps on giving!

Two Months Post Transplant

It's hard to believe that only two months ago, I got my bone marrow
transplant. How have I been faring since I have been released from the
hospital?

In a word: tired

This is totally normal and expected.  My body is busy making the new
bone marrow my own and also building up a brand new immune system.
This is very hard work and leaves me extremely fatigued.

And it's not just physical fatigue. It's mental fatigue too. Send an email? Maybe
tomorrow. Make those phone calls? Later - can't think now. Write the blog? Next
week, when I have more energy.

I spend a great deal of my day on the couch, either watching television, or napping.
And it's okay. Took me a while to accept that it is okay that I'm not busy. My body
won't actually allow me to be busy. I run one or two errands and have to lie down.

Ivy and I are still great friends. But I spend less time with her than I used to.  I only
have to do two hours of IV infusion every day instead of four. This is huge! I can
easily squeeze two hours of inactivity into my day. Four hours was a bit much.

I've had some shortness of breath. Not sure why. I have some tests next week to rule
out anything vile. Hoping that all is well. I worry.

I'm already past day 60 of my 100 days of super restrictions. I got the go-ahead to go
to the beach (as long as I wear water shoes) and I can go into the ocean up to my waist.
On a super good note, I am 99% engrafted, which means 99% of my sister's marrow has
made a home in my body.

Not too bad overall! And if you would like to visit, just give me a call or an email. I
would love to see you!

Happy 4th of July!

Freedom

I got some awesome news from the doctor the other day. My
driving ban has been lifted!! I was really under the impression
that it was a 100 day ban. They told me it was because of my
meds. But now they have changed their tune and told me that
as long as I was feeling okay, I can drive!

My first foray out was to the local CVS. I took Sophie with me. I
still need to wear a mask and gloves when I go out. All was
going well until Sophie disappeared. It took me a few minutes
to figure out why: there was someone in the store she knew, and
she did not want to be seen with The Masked Creature. Teenagers!
She ended up meeting me in the car.

Yesterday, I ventured all the way to Trader Joes. Did a bit of shopping, but
then just got exhausted. I took a two hour nap when I got home.

So even though I am free to go where I want, I don't yet have the energy
to go where I want. I'll take it, at any rate. It give me a bit more freedom
than I had, and that feels wonderful!

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.

Pain in the Neck

I got a couple of new holes punched in me yesterday - a Hickman catheter.
It's a port, or central line, in my upper chest so that they have two more places to infuse
medication.

I received a central line back in the stone age of medicine - in 1982. Back then, it was
a single line, and they inserted it while I was wide awake in my hospital bed. I remember
the insertion being very uncomfortable but I felt fine afterwards.

This time, the fancy Hickman catheter was inserted in a clean OR and I was sedated. This
means I was kinda awake. I could hear them talking and feel some things but was mostly
sleeping.

After the local numbing drugs wore off, however, I noticed it was much more painful than
the old-fashioned central line I got years ago. My entire neck hurts. My collar bone hurts.
I try to walk down the hall, but I am hanging my head like Quasimodo from the Hunchback
of Notre Dame because it aches so much. You have no idea how much you use your neck muscles
for just moving around. It's crazy! And the crazier thing is that Tylenol would help the
discomfort. But I can't have Tylenol (it masks fevers - a big no no here). Instead, I'm offered
oxycodon for the pain. That's just wacko.

Oh - the new line has a nickname, thanks to the iPhone's autocorrect. It's named "Elaine".

The nurses have assured me that the pain and discomfort are normal
and I will feel like myself again in a day or two.
In the meantime, please excuse me. I have some bells to ring.

New Digs

After waiting most of the day in a temporary double room, I hauled myself down
the hallway last night at 11:00pm to my new, single, private room!! It's room 7011 on
Rhoads, but I do not have the exact mailing address at this point. I can have visitors any
time except for this Friday. They will be sanitizing my room that day and I will be in
a temporary holding place while they do that. Not a good day for visitors. But other than that,
if you don't mind putting on a gown and gloves, and are healthy, you can come visit me.

My new room is really spacious. And just like a New York City studio, the room is
very multi-purpose.

Here is my kitchen:

Yup - a fridge AND a microwave!!!

Here's my living room:

Here's the office and dining room combo:

Great news! I even have a fitness room:

But the best news is that finally, I have an awesome view!!

I am super happy about this!! In the past, I have stared out at industrial pipes and walls. Love to see Penn campus. Even though this is a gloomy day, I have beautiful things to look at!  Not too shabby. It will really help my spirits to see the trees and the city change from spring to summer over the next month.

Girding My Loins

I am as ready for the hospital as I can be. Bags packed, house cleaned (thank you kind sisters!!), pre-testing done.

However, I still lie awake at night with the worry-worries. That huge Unknown
coming up. Will I be very sick? Will I feel like crap? Will I get a nice room? Will
I be lonely? Will I be bored? Will I feel well enough to be bored? Will I get homesick?
Will I miss my kids terrible (of course!)? Will they be okay?

All of this stress is making me hyperventilate. Not in the paper-bag type of hyperventilating,
but in the "I cannot take a relaxed breath" kind.

But in the end, the only direction I can take is forward. To quote Lao Tzu: The journey
of 1000 miles begins with a single step. I have 1000 miles to go in this odyssey.

My loins are girded. I'm ready for that first step.

Mom

I think about my mom every day.  Sometimes good thoughts. Sometimes bad.
And a lot of times "No, this can't really be happening" thoughts.

I hate that I have the same
diagnosis as my mother did. There is nothing scarier than seeing my name and
my diagnosis on a piece of paper. My mother's illness and subsequent death were
very traumatizing for both me and my sisters.

However, it is 8 years later, and I have opportunities for a cure that she never had.
There is a profound sense of guilt that goes along with it. I am about to go into the
hospital for a bone marrow transplant, and she never had that opportunity. When I
hear the doctors talk about what they do for patients who have relapsed, I just want
to reach back in time and pull my mother forward and say "Here - you can use those
techniques on her!!".

It is hard to let go of that guilt. It's a funny emotion to have about such a serious illness.
But there it is - a boatload of guilt. I wish that she had a 10/10 donor. I also wish she
handled the chemotherapy better. Because, the truth of it is, she had a tough time with the
initial treatment. And the followup treatment. And because of that, she really was not
a good candidate for a bone marrow transplant even if she had a perfect match.
And there is no reason for me to feel guilty for surviving while she could not survive.
And yet...there it is.

Still, I carry her memory with me every day. I also carry with me her strength. She faced
her illness with fortitude and a fighting spririt, and also a sense of humor. I'm glad I have
that sense of humor as well. It takes the edge off. It helps cope with the reality of this.

I like to think that she had a hand in the fact that I have a perfect match in my sister. Well, yes,
she did - in that she donated her DNA. But I like to envision her as a type of guardian angel.
To make sure I make it through. To make sure my sisters make it through. This is as hard on
them as it is on me. Brings back so many difficult memories. I hope that her comforting arms
are around us all as we enter in this next phase.

Love you Mom!

A Warm Reprieve

I received a wonderful gift from my doctors last month. They gave me the
go ahead to take a small vacation with my family!!

So last week, we headed down to Clearwater, Florida, for a few days of R&R.
I sat by the pool and relaxed. I walked along the beach with the Hubs and watched the surf.
I collected shells with my kids. I almost forgot about the upcoming months.

It was lovely.

And when I pack my bags for my long hospital stay, I will pack a special bag to
bring along. This will be my bag of memories: Going to the spa with my daughter
and laughing because we could not find the spa bathroom. Sitting and listening
to the "Turtle Lady" with my son at the local aquarium. Having a glass of champagne
with the Hubs. Sitting on the balcony of our room in rocking chairs just watching the
ocean.

I'll even pack the whiny normalcy that is traveling with a teenager and
a pre-teen. This includes the following gems:

"You guys are boneheads! Why do I have parents who are boneheads?"
"Way to poop the party, guys!"
"Moth-ER. It's pronounced Hos-TILE. Not Hos-til."

I treasure their bickering. I'm glad they don't treat me like I'm an invalid. Or something
fragile. They treat me like a normal mom. And for four glorious days, I got to be a normal
mom and a normal wife and just enjoy a vacation with my family.

Just what the doctor ordered!

It's a Date!

I finally have an official date for my transplant!

I am going in to the hospital on April 25th

The actual bone marrow transplant will take place on May 3rd.

I will be in the hospital for the entire month of May.

This will give the docs plenty of time to both wipe out my own bone marrow
and also wipe out my entire immune system. Once I get my new fresh bone
marrow from my generous sister, they have to wait until it "grafts" or is
accepted by my body.

Not only does this sound like tons of fun, but guess what? Here's something
my kids think is hilarious: my immune system will be erased to the point
that when it comes back, it will have no immunity built up. That means I
have to get every SINGLE vaccine again. And it's a schedule similar to that
of a baby - vaccines at 6 months. Again at 9 months. Again at 12 months. Etc.
It's not mean that my kids think this is funny. They just think it's funny that I
will have to go through the same thing they have had to go through for years.

I will have lots and lots of restrictions both in the hospital and when I get home.
But that's for another post when I get more details.

It will be a tough month for me. And a tough month for my family. But it's
the first step in eradicating this thing that haunts me.

And here's the important thing: I can have visitors while I'm in there! You will need
to wear a gown and gloves. And I may or may not be great company. But that's
besides the point. I can have visitors. That's fabulous!

The Coiled Snake

I hear from a lot of people that I have a wonderful attitude about
my current situation. And for the most part, I do. I am not a
"why me" type of person. I am a "let's deal with this" type of gal.

However, I must admit that Fear often strikes me like a coiled snake,
just waiting patiently to get me when I am least expecting it.

Sometimes, the Fear is like a cobra. Rising up out of nowhere. Hypnotising
me with it's hooded head.

Sometimes, the Fear is like a python. Slowly squeezing me until I can no
longer breathe.

And sometimes, it's a harmless Garter snake. A quick fright, and then
relief that it was not so scary after all.

It's difficult dealing with these unpredictable snakes. They get me in the
middle of the night. They get me on a Sunday morning, while I am drinking
my coffee. They get me while I'm sitting on the couch with my kids, watching
TV.

The best I can do at this point is to hit imaginary sticks together to ward off
the snakes of Fear. Sometimes that works. Sometimes it does not.

The other thing that drives the snakes away is talking. When I talk about the Fear,
the snakes seem to stay in the grass, minding their own business. So I talk to the Hubs.
I talk to my friends. I talk to the nurses. I talk to the doctors. Every word out of my
mouth drives them a little further from me.

But I know that those snakes will never go away completely. As anyone who has had
a serious, frightening illness knows, that snake is always coiled. Ready to strike
at any time. I think Love and Faith and Grit are great anit-venoms. They will soothe
the strike. But I don't know how to drive out the snakes completely. I don't think I ever will.

Test-O-Palooza

I have not written much lately because I've been swamped by either fatigue
or recovery. Which are slightly different things.

Recovery means that I spent much of last week sitting in an Infusion Chair, getting
a total of three units of platelets and two units of whole blood. This is a huge
huge time suck, even though it's good for me.

I have had bad reactions to platelets in the past, so I have to get three pre-medications
(two antihistamines and a steroid) before they even start. Even with all of the
precautions, I had one day last week where I broke out in a rash, sore throat, swollen
eye, and itchy hands and feet. That meant more antihistamine and more steroids
and then the big wait for at least some of it to go away.

So I did not get much done last week.

This week, I'm just battleing normal fatigue. It tends to hit hard about 2pm, which is
pretty good timing. I am usually able to sneak in a tiny nap before the kids come home.

Except for yesterday.

Yesterday was Big Test Day. I went downtown to have 5 tests and 2 doc appts. All
of this testing is getting me ready for the transplant. The tests were:

Pulminary Function Test
EKG
Chest X-Ray
Bone Marrow Biopsy
Echocaridogram

Plus more blood vials than I have ever seen. They took at least 15 different
vials. Who says blood-letting is dead.

Take a wild guess at which test was the most dreadful...

If you guessed Bone Marrow Biopsy, you would be wrong. That actually went extremely
well. When the nurse pulled up the waistband up my pants, I lay there for a minute and
then said, incredulously, 'I'm done?" Yup. Only a tiny bit of pain.

The worst test was the Pulminary Function Test. It involved nose clips (my nemesis)
and breathing hard in a tiny tube. And holding my breath. I really really hate this
test. It makes me feel like I'm drowning or suffocating. And I had to do it twice.
Because the test detected a "blockage". Which is fancy talk for "You are not using
your lungs to full capacity - maybe you have asthma".

I explained to the nurse that I had chest surgery two years ago to get a biopsy of the
Non-Hodkins Lymphoma, and they collapsed my lung, and then poured talcum powder
in there so my lung would stick to my chest wall, and I thought that just might be the
reason I was not using my lungs to full capacity.

No matter - I still had to have a breathing treatment, which I also hate because
they make me nauseaus. Took the test again. No change. Duh. Which means it
is not asthma, but scar tissue from the chest surgery. I hate when I know the
answer ahead of time.

But the good news is that I am (almost) done with all of my pre-transplant  testing.
I still have to get a mammogram, but will do this next time I'm in Philly.

And I got the best news any woman can get - I need to fatten up before the transplant!
Yahoo!! It was really nice to end the day on a good note like that!

Stir Crazy

I am eating plums out of a can. Does anybody buy these canned plums
anymore? They have the pits in them. I like them - they remind me of
my childhood. For some reason, my mother often bought canned plums
and canned apricots (another favorite of mine!). Then again, the only
vegetables I had as a kid came out of a can. It was the 70's, people.

Why am I eating plums out of a can? Because I cannot have any fresh
fruit or vegetables right now. And I am really craving some fruit. Canned
plums was all I had in the house. A poor substitute for the berries that I want
to eat.

I am neutorpenic. That is a fancy word for "Lady, you have no
immune system". I means that I am house-bound, except for a few brief
forays to go get platelets.

I am giving myself daily injections to jump-start my depleted immune system.
It just takes time. And I'm not terribly patient.

So this weekend, I stayed home while my family went to a fun bar mitzvah. I stayed
home while the Hubs took Sophie to a Home Show (I want a new bathroom!!). I stayed
home while the Hubs went to the school talent show.

I know it's part of the process, but it can be frustrating. And I felt fine all weekend - raring
to go. However, today I'm feeling rather crappy, so it's no big sacrifice to stay in on this
rainy day. I'm making chicken soup.

Because chicken soup can make everything better. And by the end of the week, my
immune system will have recovered somewhat and I won't feel like such a shut-in.

In the meantime, though, I'm a little bit stir-crazy.

Unsung Hero

Getting cancer stinks for the entire family. There is no nice way to put that.
When one person is sick, the whole family suffers on some level or another.
It's hard. Schedules are interupted. Things don't get done. Anxiety levels are high.

But I have to give a huge thank you to The Hubs. He has been a rock through this
process. From the first moment I called him in January, and told him in a very
shaky voice that my bloodwork did not come back looking good and I had to stay
overnight in the hospital. He dropped everything and drove home to be with the kids.

He had an important business meeting scheduled in Arizona the week of January 23rd.
He was also going to visit with his Dad while he was out there. Once my diagnosis
came in, he cancelled the trip without complaining. He also worked from home the
entire time I was in the hospital and became Mr. Mom, taking care of the kids, and driving
them around, and providing them with meals.

And me? Well, I'm not a great wife. I nag him, I complain to him, I grumble. I take
my frustrations out on him. And he usually knows it is because I am so afraid. And
he manages to calm me down.

He's always so positive and I don't ever give him enough credit for all that he does. I
could never go through this without knowing that he has my back.  I know that
he'll be able to handle the home front, so I can focus on getting better so that I can be
me again.

A girl could not ask for better support than that!

Hurry up and Wait

This should be the official mantra of all hospitals.

Got here at 11. In the Rhoads wing again but 7th floor this time. I
am very excited to be room 1. That means I not only get my meals
first, but they might actually be hot.

Penn just got a new computer system last week, so it took a long, long time
to check me in and get my history. And because I accidentally missed
an appointment with my doctor today (it was not on the calendar until this
morning when the hospital called to say the room was ready and I thought
they were the same thing), chemo is delayed.

So I'm just sitting in my room waiting. And waiting. I think I have a few more
hours before they bring the poison in. I'm also untethered right now, which feels
so odd.   Diana the Pole will be my friend once again as soon as everything
gets jumping.

So I'm doing some laps and then coming back in the room to wait. Fun. But at
least I won't be waiting for my meal!! And I'm sure once I get the chemo, I'll
be wishing I was back to the wait stage.

For now, I can look forward to waiting for Saturday, when I get to home to my
family again. I really miss them when I'm away.

Garden Party?

After my last post, I have gotten messages from several people
volunteering to help me with my garden. However, I cannot
harvest or eat any fresh vegetables this summer (still sad about
the tomatoes).

But then I had an idea. What if I order a bunch of flower seeds. And
what if people who would like to help could come over in late May
after I am out of the hospital and help my family clean up the garden
space and plant the flower seeds?

I can't cut the flowers. I cannot go out and smell the flowers.

But I can sit on my deck in the warm sunshine and look out at my
flowering garden and heal.

If you are interested in this, send me a private message. I think a Sunday
in late May/early June depending on my release date would work. We
can order pizza and make it a party.

And I think the bees and butterflies and birds would appreciate it too!

Even Superheroes Get the Blues

Maybe it's the fact that we did not get the promised snow.
Or maybe it's a million other things. I know that I am very
nervous for next weeks' chemo treatment. Maybe it's that.

But I'm just having one of those days. I am sorry I did not invite
anyone, but I am having a Pity Party, and there's only room for me.

Sometimes everything just gets to me.

In January, my family and I were hoping to go to Paris for summer
vacation.
Now I'm going to be spending the summer holed up at home recouperating.
I'm going to feel caged.

In January, I was looking through seed catalogs and mentally planning my garden.
Now, I will not be able to go near the soil. No garden. This saddens my soul.

In January, I was looking at cookbooks. Cookbooks make me happy.
Now, I will not be able to prepare my own meals for 100 days after transplant.
I love cooking. I love making meals for my family, even if all they do is complain
about those meals.

In January, I was working a nice, part-time job.
Now, my full time job is just managing my health. Doctor's appointments,
nurses coming to the house. The fatigue alone prevents me from doing very
much during the day. And it will get worse before it gets better.

In January, I had an appointment for a cut and color.
Now, I just bought a backup wig for LBH.

Some of all of this is because I have become a "What-If-er". I lie awake at
night:

What if this next round of chemo makes me sick.
What if I have to stay in the hospital for more than 3 days.
What if I don't get everything I want to get done, done, before going
in for transplant in April.

And the big What-If that is stealing my sleep.

What If all of this does not work.

Most days, I can just work through things and bounce back up.

Just not having one of those days. Maybe a nap will help. Snow sure would
have helped.Snow makes me feel cozy and safe.

I think I will go snuggle with the dog for a bit. He knows how to break up a
Pity Party. I think that will be a good thing.