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.