All I Want For Christmas

When someone actually tells you that you have 3-5 years to live, what do you do with that?

a) Say "Thanks for the info," and plan for the next 3-5 years..

b) Stand there and stomp your feet crying "no, no, no!"

c) Stare off into space wondering how you're going to get out of this one.

d) Look around, realize you have a family to take care of, snap out of it and go change a diaper.

e) All of the above.

Unoriginal I know, but that's right, the answer was (e).

[Pause: Except that the (b) answer was kinda modified. I imagined myself hysterically responding that way but didn't actually go through with it...fortunately for everyone around me.]

One of the most important things I learned very quickly on Christmas Eve was I really didn't have the time to dwell on my diagnosis so I had to choose the pensive moments very carefully and privately. My kids taught me that, especially my 17 month old baby. They became such a welcome and very necessary distraction. They had their priorities and Christmas Eve was a very exciting time for them. There was Christmas music and telling stories and reading "The Night Before Christmas" and carrots for reindeer and cookies for Santa and finally bedtime. 

There may have been a moment...but just a moment when my mind would start wandering and I would glance at my husband deep in thought. 

I wonder.

His pensive moment.

And then it was over. For now.

Breathe.

Back to the distraction. Stay up as long as possible and wrap gifts so I can fall asleep without too much noise in my head. Big surprises must be ready for tomorrow.  We look in on the kids before going to bed and feel such peace.

My husband and I fall asleep holding hands. 

The magic of children and Christmas morning. For me it is one of the most joyful experiences ever. This year was no exception but it was different. That dreamlike state again. Kind of like watching from the outside in or hovering above it all. Taking it all in. It was so important to be present in every moment of the day.

Because who knows.

What if.

When they were young our kids always used to love getting me emotional to the point of crying and I don't know why. They knew what it took and they were proud of their accomplishment. Whether it was a handmade gift from school, a photo, something they'd written to me or a book I read to them, they loved it.

"Oh Mom, are you crying? Is that a tear?" Followed by laughter.

Every time.

The Christmas book, "The Polar Express", was no exception. I loved it and I loved reading it to them. I could get through the entire book no problem. Until the final page.

"At one time most of my friends could hear the bell, but as years passed, it fell silent for all of them. Even Sarah found one Christmas that she could no longer hear its sweet sound. Though I've grown old, the bell still rings for me as it does for all who truly believe."

Deep breath.

Believe.

All I wanted for Christmas that year was for it to last forever.

The Proof Is In The Pudding

We left the hospital on Saturday with directions and next steps in hand in a daze. There was no confirmation of anything other than an abnormal blood test. There were possibilities but that's all and that's what we were holding on to. It could be something else. You never know. Right? I had to go to a hematologist's office very early on Monday to try and get an appointment...for Monday. Holding out hope he could see me three days before Christmas. Fingers crossed.

The drive home was quiet.

Time to put on a happy face as we got back to our other reality, the one I really loved, of happy kids excited about Santa Claus making an appearance very soon. We still had so much to do for the big day...baking, shopping, decorating. I've always loved the Christmas season and I loved the traditions we'd started the first Christmas we spent together in 1980. I wanted them to go on forever.

Great thing about young kids is they keep you on your toes constantly and busy...very, very busy. And distracted, which for me was a good thing given the circumstances. I loved being a Mom. I honestly felt it was my reason for living, my purpose so to speak.

And there we were. The rest of Saturday and the whole of Sunday kind of in a dream like state. One minute laughing and playing with the kids and the next minute, mind wandering...again. If you can imagine yourself just starting to drift.

Mental dialog.

I wonder, "what if...", "if this then what...", or just a good old "WTF!!"

[Pause: You know what? In 1985 there were no abbreviations. It was just What The F#*k??? It was a gift. Wrapped up everything I was feeling in a neat little word and tied it with a bow. Not that I said it in front of the kids even though it was one of my favorite words. Although there was that one time when I'd had the day from hell and my youngest, who was probably 4 at the time, proudly told his Dad when he walked in the door after a hard day at work, "Hi Daddy. Guess what Mommy's been saying all day today? Shit, shit, shit. All day!" I don't remember denying it.]

Monday, day before Christmas Eve. Ha! Guess what?

The office is closed! Not what we expected or even guessed might happen. We had come prepared for next steps. Disappointed to say the least. What a let down. What's next?

C.L.O.S.E.D.

Come back tomorrow, early.

Christmas Eve

It was early and the doctor was in. Good news. He could see me immediately. It was another STAT procedure. He told me that I needed a bone marrow exam because of my abnormal blood counts and he prepared me for the exam. It was a very uncomfortable procedure to say the least but I've always been very proud of my threshold for pain and discomfort. [Refer to my December 10 post.]

We waited for him to do whatever he had to do. I don't know what it was but I'm sure there was a microscope involved because he was, after all, a hematologist. I can't say how long we had to wait for the results but it didn't seem too long.

And then it came.

"You have leukemia...leukemia...leukemia..."

"The only cure is a bone marrow transplant...transplant...transplant..."

"You have to take this drug...drug...drug..."

Weak jelly legs. Can't stand up. Gonna be sick. What is he saying? Can't hear. Can't understand.

But my kids. Oh no no no no. You don't understand.

Birthdays. School. Graduation. Wedding. Wedding. I can't miss my daughter's wedding. I know she's only seven but she'll get married and I need to be there. Don't you understand?

Noooooo...

I just can't. Do. This.

You know how people say in a moment their life flashes before them? Well it's true. That is exactly what happened to me and I can feel it like it was yesterday. All of those thoughts went through my head like lightening. Didn't say a word.

Funny that I don't remember that doctor's name. I remember all of the others over the years but not his and I wonder why that is. He did his job. He gave me the diagnosis, gave me a prescription and that was it. Another day at the office.

The drug I had to take, Hydrea was the only drug available in 1985 for CML and it scared the shit out of me. I hesitated for the longest time, holding that first pill in my hand struggling for another option but feeling helpless. Tired.

Gulp. Swallow. Gone. 

Happy sounds. Kids laughing. We all need to go shopping. Tomorrow is Christmas and we're all excited to be together celebrating. That's the life I love.

And so we went shopping.

Ho! Ho! Ho!

Saturday, December 21 - not your run of the mill, 4 days before Christmas, Saturday. 

We had to get back to the hospital in the morning for those additional tests and we left the house with the kids in good hands. I was very confused upon entering said hospital because there seemed to be a lot of doom and gloom around me, not my style. I wanted happy faces. When I saw Dr. R. he very seriously (as in not smiling) told me I needed some more blood work so I sat down with a young technician. She wasn't smiling either and it was really starting to bug me. She seemed frustrated as she struggled trying to get the needle in my arm and she looked very, I dunno, somber. 

So, I jokingly said out loud, " Is someone dying around here?"

She did a double take, attempted a grin and I said, "Just kidding, jeez."

It's hard to sit and wait patiently for something when you have no idea what you're waiting for so we just made small talk about Christmas, the kids and whatever else came to us until my doctor came into the room with a very puzzled look on his face. He did not look happy. He said the blood tests showed my white count was extremely high and he didn't know anything for sure at that moment. 

And then he paused. 

Long, uncomfortable pause. 

I felt really bad for him because it was as if he didn't want to tell us something and I wanted to protect him from telling us so I just asked him. 

"So, what medical condition usually has a high white count?" 

He looked almost apologetic as he hesitated and then he said, "Leukemia." 

"But", he said, "we won't know until we run more tests."

KABOOM!

So.

Hmmm.

Hmmm.

Okay then.

I think my husband and I were both just stunned and we literally had nothing to say...didn't know how to respond. It was very strange. It's not like there was any confirmation of anything. It was just kind of a "might be" thing. In our minds. I think.

Dr. R. had to make some arrangements, find a specialist, do whatever doctors do in this situation so we went outside to get some fresh air. 

Elevator. 

Silence. 

Outside.

Breathe.

First words out of my mouth when we sat down were the following, "People die with leukemia."

It's funny, the first thing that comes to your mind when you least expect it. I said this because I had a flashback to the only other time I had heard of leukemia and yes, I am serious. I thought of the movie Love Story. It was written in 1970 and anyone who saw the movie remembers it because of the famous line, "Love means never having to say you're sorry." I saw the movie and read the book.

Well, at this particular moment of my life I thought of the movie because of only one reason.
 
[Spoiler Alert! The main character had leukemia and she died.]

I think I must remind you again that there was no internet in 1985, no information at your fingertips and no constant news stream. People didn't discuss things like cancer, the big C.

So we just kind of sat outside in silence not really knowing what to say. My husband needed to go inside to make a phone call and check on the kids. I think he needed to go somewhere else to get air on his own and so I sat there not knowing what to think but I did know that I was confused.

How the heck did I get here? What happened?

And So It Begins

It’s a strange thing, the human body. When things aren’t working the way they’re supposed to and you don’t know why, you’re left in kind of a quandary. What are you supposed to do? How are you supposed to think? And can I just carry on…please?

I got a call from my doctor not too long after I’d been home. He wanted me to meet him at the hospital. He said my white blood cell count was pretty high and he wanted to run some more tests. This, of course, meant nothing to me and I called my really good friend (who just happened to be a nurse) to come over and watch my kids. My husband would meet me at the hospital. 

My friend was a true “go to friend” in every sense. Two of our kids were pretty much the same age and I would call her whenever I had a medical question. As a matter of fact I had called her to tell her about the pain earlier in the day and she very calmly convinced me to go to the doc.

So she came over and I was joking with her as I left. Her grandmother had recently died and as I was running out the door I thought it would be funny to make the following comment:

“Who knows, maybe you’ll have another funeral to go to. Ha!”

She understood my sick sense of humor and smiled.

After I closed the door I know I thought, “did I just say that?” Ha!

[Pause: You might be wondering why I didn’t just Google “white blood count” because that’s what most people would do today. I must remind you that it was 1985 and there was no Internet. I had to trust and rely on word of mouth.]

At The Hospital

So, the good news was I wasn't pregnant. No ectopic pregnancy. Nope.

The bad news was they didn't know what was wrong so they had to try and figure out what was causing the pain deep inside my abdomen. I needed to have an ultrasound and in order to have said ultrasound I had to drink more liquid without peeing than I think I had ever had any time before. Ever in my life. Major discomfort.

When my husband and I find ourselves in a situation that is kind of boring, in a public place, nothing to do really, we usually end up people watching which usually ends up a laughing matter. Which, if you know me, I love to do. Which is a good thing given these circumstances. Kind of. Except there was this matter of having an overflowing, bursting bladder. So given said circumstances there were many expletives that slipped out which was not unusual for me. I couldn't laugh.

I remember it took forever until I had the actual ultrasound and I was certain they would be able to tell me what the problem was so I was waiting for the "aha moment" from either the technician or the doctors (my doctor's partner was there now too). Puzzled faces. Nothing happened. Nothing showed up. Must run more tests. Crap.

"Can you please come back to the hospital in the morning?"

Yup, cause I just wanted to go home to my babies. It was late and we were all tired. The pain in my abdomen had lessened so things were looking up. I felt better. And it was the weekend. Tomorrow was Saturday, my husband would be home. Only five days until Christmas, one of my favorite days of the year and time to get really excited.

WooHoo!

Life Interrupted

It was a Friday like any other Friday really. Kids. Babies. School. Diapers. Christmas coming. Probably too busy to take a breath because I didn’t remember how to do that anymore.

Stop. Breathe.

Too much to do.

I felt this horrible pain sometime during the day and by the afternoon I was arranging to have someone at the house to watch the kids. I was off to the doctor. When I called my husband to tell him he almost dropped the phone. The doctor was something I just never did but this time I had to go.

Time seemed to fly by that Friday afternoon but when I think back I see it almost like a movie in slow motion. I’m standing outside of myself and watching me go through motions and reacting without time to think. I’m just in the moment. I haven’t had any symptoms of anything. At least I don’t think I have. I haven’t noticed anything. I’ve been busy with our two boys, 17 months and 3 years and our 7 year old girl. I’m a busy and happy mom and I love to work out and I don’t have time to get sick. It would be too inconvenient. These are my thoughts as I’m driving to the appointment. There are only five days until Christmas and I still have so much to do. Work out. I have to work out. It’s my saving grace, my sanity.

Come on. This sucks.

I’m the last patient of the day at my doctor’s office on the Friday before Christmas. Strange feeling. Very quiet. Empty office. Almost everyone has gone home. He examines me quickly. As he presses an area deep inside me I feel a pain like nothing I’ve ever felt before. Excruciating. I think I must scream and I grab his arm for fear of falling off the table. The pain makes me cry. He tells me he thinks I have an ectopic pregnancy.

I’m in a whirlwind and have no idea what to think. He wants me to have some blood tests immediately and I hear him phone the orders in.

STAT. Pause. Sounds important.

I go across the street to get the blood tests done and I’m in a hurry. I need to get home to be with my kids and get stuff done. He’ll call me with the results and next steps. I go home.

My kids.

My husband.

My life.