It's a Match!

I would like to thank my parents for being boring individuals and handing out
the same immune system to two of their children and almost the same immune
system to the third.

I am a lucky lucky duck!! One of my sisters is a perfect match. This means that
I will be getting a bone marrow transplant from her. And my other sister is
a near match. And there are also ELEVEN
non-related perfect matches out there from the registry. The doctors are very
pleased. I am just scared. Because this makes it real for me. It has also
sped up my timeline immensely.

But first - really good news: Bone Marrow Biopsy came back nice and clean.
I am in full remission from the leukemia. Yay!

So the plan is that I will go into the hospital on March 15th for three days for
a quick chemo treatment. This will ensure that the leukemia stays in remission
for the time it takes to process all of the data for the transplant.

Then I will go in sometime during the week of April 17th for the actual transplant.
I will be in the hospital for a month. Then I will be home again to recoup. With a
lot of restrictions. Again - this is scary for me.

But I am focusing on the positive outcome, not the fear. I have a good chance to
beat this thing! Thank you, sister, for matching me! Thank you other sis for
 being such a great support system. I could never do this without
the two of you!!

Grangry

When you are diagnosed with cancer, whether it's the first time, or, like me, an
exciting second time, a lot of emotions course through you. Fear, anger,
confusion, more fear, just to name a few.

But after all is said and done,  I am left with an emotion I call Granger. This is
being angry and grateful at the same time. It can be quite confusing. But there it is,
Granger.

I am angry that I got cancer in the first place two years ago.
But grateful that it was Non-Hodgkins Lymphoma, which is very treatable.

I am angry that my last chemo date was right before my daughter's bat mitzvah in 2015.
But grateful that it was finished, and I was able to attend.

I am angry that I had to go through radiaion. It was grueling.
But grateful that it killed that last of the cancer cells.

I am angry that I now have leukemia.
But grateful that I have a great team of docs and am looking at a cure.

I am angry that I have to go through chemo again.
But grateful that I know what to expect.

I am angry that I had to spend a month in the hospital, and have more hospital time coming.
But grateful that we live near one of the best hospitals out there.

You can be Grangry over lots and lots of stuff. But somehow, I feel lucky to be
Grangry. Very lucky to have the grateful part of that emotion. I hope that I can
stay Grangry. It sure beats "Fangry" - when you are angry and fearful at the same time.
This is how I feel every time I see my actual diagnosis attached to my name.  I don't
like Fangry. I prefer Granger any day. Here's to Granger! May it carry me through some
rough times!

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.