Just Believe

Today the Texas Medical Center in Houston, Texas is the largest medical center in the world. It exceeds one thousand acres in size, is larger than downtown Dallas and receives 160 thousand daily visitors and over six million annual patient visits. It is a small city.


On January 8th, 1986 I had an appointment at one of the hospitals in the Texas Medical Center which was officially called the "University of Texas System Cancer Center, M.D. Anderson Hospital and Tumor Institute in Houston Texas". 

It was a Wednesday and as we walked away from our taxi and stepped through the sliding glass doors we found ourselves in a world we couldn't have imagined only sixteen days ago. 

Cancer. 

We were speechless, nervous, wide eyed and in awe. This was completely new to us and I paused to reflect on how we got there.

The phone rang about twenty minutes after his receptionist said she'd talk to Dr. McCredie.

"Dr. McCredie will see you."

"Excuse me?"

"I spoke with Dr. McCredie. I relayed everything you told me and he said he will see you."

Speechless.

Take a deep breath.

"He would like you to stop taking your medication immediately."

My mind is racing. This is it. This is what you were hoping for. He said yes.

He. Said. Yes.

So many things to take care of. I can't believe this is happening. I can't stop the mind chatter that is so loud now. What will I tell the kids? What will I do with the kids? I know she's giving me important information. She's sending me forms. Oh crap, what did she say?

Call husband. Exhilaration. 

It's all so overwhelming. It's everything I wanted. It's exactly what I'd hoped for. 

I had no idea what was going to happen but what I did know was that it was better than the alternative I'd silently been living with every day since Christmas Eve. Day to day activities had been as normal and distracting as I needed them to be. 

Take our daughter to her second grade class and admire her from afar. She was an incredible big sister and an amazing mother's helper. She was very serious and determined and sometimes I wondered what was really going on in that seven year old mind of hers.

Take our middle son to pre-school. He was a happy and carefree soul. And chatty, very chatty. I loved the innocence of his smile. It melted my heart.

Hang out with and hang on to our baby boy. He was a handful of out of control energy and I loved his huge "around my neck" hugs. I'd stopped nursing him shortly before I was diagnosed. Knowing full well he didn't understand, sometimes I'd look at him with tears in my eyes and ask, "What are we gonna do, huh?"

Three young lives, each on their own paths. It was all just beginning for them and I knew I had to be there every step of the way. To pick them up if they fell. To hold them if they hurt. To look at the stars with them. To give them butterfly kisses. To laugh with them and cry with them. To comfort them. To just hold their hand. I would do whatever I possibly could to make that happen.

Family came together to help out. Lists were made. Bags were packed. We promised to come back from our "trip" with presents. 

Big.

Huge.

Hugs.

And then.

There we were stepping through those sliding glass doors into an unfamiliar world of hope.

A Leap Of Faith

It was unknown to me that my "go to" friend had been doing some research and through a friend of a friend she had found another doctor she thought I might be interested in pursuing. His name was Dr. Kenneth McCredie and he was located in Houston, Texas. He was not only a leukemia specialist, he was one of the foremost researchers in the world in adult leukemia.

He was my glimmer of hope. Yes, at this point, I was hanging on for a glimmer. 

Time to go to the library and find out everything I could about this man.

He had a book that was published in 1983 entitled "Understanding Leukemia" which was coauthored with Cynthia Margolies. Dr. McCredie's credentials, listed on the back flap were impressive: 

"Kenneth B. McCredie. M.D., is Chairman, Medical and Scientific Advisory Committee for the Leukemia Society of America, and Internist and Professor of Medicine at the Department of Developmental Therapeutics for the University of Texas System Cancer Center, M.D. Anderson Hospital and Tumor Institute in Houston, Texas."

But what resonated with me more than anything was what he wrote in the Author's Notes at the beginning of the book.

"Today we can offer realistic hope for lengthy remissions and even probable cures for many leukemia patients, something that was not likely even ten years ago. We are optimistic, with reason, that leukemia will soon be conquered. I want to share with the reader many of the reasons for this optimism."

Realistic hope.

Probable cure.

Optimistic.

These words I loved. These words I needed to hear.

What was I to do next? Call his office and make an appointment.

Naive? Probably.

Hopeful? Absolutely.

Nervous? Yup.

House is quiet. Two kids at pre-school/school and one napping so guaranteed no interruptions.

[heart pounding and butterflies]

Dial the number.

The conversation begins:

"Dr. McCredie's office. How may I help you?"

"Hi. I'm calling from San Diego, CA and I'd like to make an appointment with Dr. McCredie please."

"Excuse me?"

Didn't you hear me?

"Um...I was wondering if I could please make an appointment with Dr. McCredie."

[long uncomfortable pause]

"Who is this?"

"My name is Moira and I'm calling from San Diego and I have leukemia and I would like to see Dr. McCredie."

Please, please can I just have an appointment?

"Sorry, do you know who Dr. McCredie is? He doesn't just see patients."  

[heavy emphasis on the word "see"]

Feeling very uncomfortable but keep talking. Keep talking. 

Don't. Give. Up.

"No, you don't understand. He has to see me. I was diagnosed with CML and I've been to a few doctors and they say I'm going to die. I know I'm younger than most people who are diagnosed with this type of leukemia. I'm only thirty-three years old. I have three young children."

"But he doesn't..."

[probably not good but now I'm talking over her] 

"You don't understand. I've been healthy all my life. I'm an athlete. I was a runner, a world class hurdler. I'm a vegetarian. I've done everything right. Please can I make an appointment with Dr. McCredie?"

[long pause]

[Note: I was so proud of myself because I didn't lose control.  I believe that persistence is the key. Plenty of pleading. No crying. I just really needed to make my point very clear. I don't recommend anyone do this today. There are procedures in place now that weren't in place in the 80's. I remind you again that, yes, this was the 80's.]

"Well, I'm telling you that Dr. McCredie does not take appointments. But...let me take your information. I will talk to him and get back to you as soon as I can."

I repeated everything I had already told her because I thought it was all very important for him to know. I didn't miss a thing, even the fact I was a hurdler. 
   
Which, I later found out, he had been too.

Coincidence? Nah.

A Teardrop Or Two

Scripps Clinic is located next to Scripps Memorial Hospital La Jolla.The location is beautiful. Surrounded by the rolling hills of California it wasn't a bad place to have to go for an appointment.

I don't really know what I expected the outcome of this appointment to be.

But, when I really think about it, I didn't have expectations.

I had hope and I wanted hope more than anything in the world because what else was there for me? So there I was.

Dr. C. was an oncologist. He seemed to be quite pleasant when I shook hands with him. We went through the normal introduction that one goes through as a new patient, exchanged pleasantries as one does. He seemed young to me and had started his private practice just a few years earlier, in 1981.

Maybe he wasn't so old school and he would know something different from that other doctor whose name I didn't remember.

He reviewed all the information I'd brought him and I answered as many questions as he asked. It was going really well. He examined me and told me to meet him back in his office.

I'm sitting in a chair in front of a very large desk waiting. The office is really big and really nice. It's warm. I'm antsy and yet, comfortable. I'm staring out at those magnificent California rolling hills. Daydreaming again. What if... 

Door opens. Dr. C. comes in. Sits down at his desk.

I look at him. And he starts.

"Well." [no pause]

"Yes you have leukemia. You have Chronic Myelogenous Leukemia." [no pause]

"You have 3-5 years to live." [no pause]

"You don't have a choice." [no pause] 

It's getting cold in the room.

Breathe. 

"You're on the correct medication. Nothing else can help you." [no pause]

"Have you told your husband? He does know, doesn't he?" [no pause]

I'm staring out the window. Oh, those beautiful hills. Please stop.

Dont. Cry. 

Shiver.

"Are you prepared for this?" [no pause]

"Have you told your children? They need to know. You need to prepare them." [no pause] 

Don't cry. Please don't cry. 

Shut. Up.

Please make him stop.

"You have to accept this." [no pause]

I can't do this. 

One tear rolls out of my eye. Slow motion. 

No. He can't win.

Another tear comes. And another. And another.

Silent tears. I say nothing.

He stands up, leans forward and pushes a box of tissues towards me.

So cold now. Shaking.

"It's good that you're crying. You have to accept it. I don't have anything else for you."[no pause]

He goes over to his door. Opens door. [no pause]

"You can leave now."

I think I'm in shock. Must call husband.

I go downstairs to the pay phone and dial our number. 

He answers. I can't speak. No words. Crying uncontrollably. 

What am I going to do?

Emotional pain. His and mine. I can feel it through the phone.

Kids can't see me like this. They wouldn't understand. Oh no. The kids.

We decided that it was best to call my "go to friend". She and her husband lived right down the street. They were both home. I cried all the way. I must have fallen into their arms as they met me in their driveway with the biggest hug ever. Still in shock I shared what had just happened. They listened as good friends do.

Deep breath.

Enough.

"No more of this. We have to come up with a plan."

And so we did.

I'll never forget that doctor's name.

[Note: A few years later I came across an article in our local paper about Dr. C. It was a human interest story about his belief in positive thinking for patients. But then, ironically, he left his practice in 1991. I'm not sure why.]

Decisions. Decisions.

When I was given the diagnosis my husband and I made the decision to inform only those very close to us. It was almost Christmas and I didn’t want to ruin the celebration of the season for anyone.

My parents and brother and sister knew. I had contacted my mother in Canada after the first mention of leukemia. 

I think I was hoping she could make it go away. She was my Mom, after all.

My father-in-law lived close by and had helped look after our kids while we were at the doctor's so he knew everything that was going on. 

And my really good “go to friend” who had watched my kids that first day knew. She actually knew more than anyone because, as I said before, she was a nurse and when I told her my white blood count was "so high...something like over 100,000", she very calmly said, "oh, maybe you just have a really bad infection."

Because that's what really good friends do. But she knew. Before I knew. 

Post Christmas

I'm putting it lightly when I say the week between Christmas and New Year’s Day was kind of like being in a funky fog. I was still the mom my kids needed and loved but I had taken on this new character even I didn't know how to play. No script. No director. I knew we would have to start making phone calls to other family members and friends. My husband has nine siblings and that was a tough one for him. For me I was torn. One part of me felt this great need to tell the world but another part of me felt so badly for having to share such awful news. How was this going to make everyone else feel?

“Happy New Year? Guess what?”

Not so much. Maybe I could sit on it for a while.

Confused.

Disoriented.

My safety net became changing a diaper, playing a game and reading a bedtime story. That's what I loved to do the most.

The more we talked about the diagnosis the more we thought about getting another opinion. We felt like we needed to do something more. It just didn't feel right to accept what we'd been told. We talked about the doctor whose name I can’t remember, the one who gave me the ominous news. [Refer to my December 20 post.] Our conversation at the time had gone something like this:

“So, is there a cure for leukemia?”

“No. You need to take this medication immediately.”

“And then?”

“You need a bone marrow transplant.”

“Have you had any patients who have had a bone marrow transplant?”

“No.”

“Do you have any experience with bone marrow transplants?”

“No.”

"Do you know anyone who has had a bone marrow transplant?"

"No."

Hmm. Okay then.

So, upon remembering and rehashing said conversation we thought just maybe it might be a good idea to get a second opinion.

An appointment was made with an oncologist who came highly recommended to us and I have to say I was feeling optimistic. Yep, so optimistic that we decided that my husband would stay home with the kids and I would go to this appointment by myself. I don't know how we actually came to make that decision but somehow it seemed like it was the okay thing to do. Little did we know. 

Last time we ever made that decision.

My world was about to come crashing down around me. 

I do remember that doctor's name.

 

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?