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!