Poison Extraction. aka: Leukemia part 2

My memories of the time between when Mom was admitted and when she left for Houston are jumbled. I know with Mom gone running the house largely fell to me. I would get me (age 8), my sister (age 3-4) and my Dad up in the mornings and make breakfast. I remember having burns on my thighs from wearing my night shirt while cooking bacon in the morning and the grease would pop and splatter me. I remember learning how to do laundry and having to have a step stool so I could climb on top of the washing machine so that I could reach the soap. I remember sitting on the sofa attempting to hand sew a hole in my under wear closed.

Through out the summer we spent a lot of time with various family members and random people from our church who volunteered to look after my sister and I for a day. That was probably the hardest. Every house had different rules. One house I sat until I was near starved b/c I'd been taught it wasn't polite to ask people for food. When the woman found out she was like "oh honey you just have to speak up or better yet go serve yourself!" Then the next house I got in trouble for trying to do just that. Some houses they'd tell me I could eat anything I wanted and others I was told that beggars can't be choosers and I should eat ONLY what they offered me and eat every last bit. 

Then there was the boredom. Some people had kids who would share their toys. Others did not - either the kids were grown or the kids wouldn't share. Or they'd want to watch a movie I wasn't interested in or what not. The sweetest woman, I have no idea what her name was or I'd write her a big fat thank you note all these years later, discovered I liked to draw and she bought me a BIG thick fat loony tunes coloring book and a box of 64 crayons. I swear that book saved my life with all those days of house hopping. 

I also discovered reading. But mostly I discovered how to fake reading.... Nobody would tell me exactly what was up with my Mom. They made this big show of how Momma would do 6 weeks of chemo therapy (counted it off on the calendar with us and everything) and then she'd be all better and could come home. That was a lie. I don't know if it was intentional or just misinformed but either way when the info changed they didn't tell me directly. 

And so I'd pretend to read a book and listen while Daddy talked on the phone. I even remember him saying "Oh nah, its okay, she's reading a book. She's not listening" and he would talk about chemo therapy and radiation and bone marrow transplants. I didn't understand what those words were exactly but I caught the gist of it. Daddy seemed to underestimate my vocabulary and comprehension back then. Where as my Mom always just talked to me like I was an adult and I'd just have to stop her occasionally to have her define things. 

It was funny b/c at one point they put me in this class with one other little boy and some type of teacher there at the hospital where she tried to give us the "My Mommy has Cancer" after school special or some such thing. I was so excited to finally have a person to ask all my questions to. I immediately started asking about chemo etc and she about freaked. lol. I think she would have put her hands over the ears of the other kid if she could. 

As it was class was HASTILY broken up - me with one teacher where I asked all my questions and the little boy went with some other person to get the kiddie version. 

Our day's went something like, we'd get dropped of with whoever was watching us that day, Dad would go to work, then he'd come and pick us up, we'd go visit Mom in the hospital. My sister and I would wear masks b/c the docs explained that we had cooties and would make Momma sick (oddly enough she never once got sick from my sister and I but she caught a dozen things from Dad lol). And then later in the evening we'd head back home and I'd lay across the foot of my Dad's bed pretending to read Black Beauty while he talked on the phone. 

In retrospect Momma mostly looked good at the time. I remember she lost some weight and when the chemo got started a friend of hers who was a beautician came the hospital and gave her a hair cut. My Mom had had the 80's big curly shoulder length hair and her friend cut it off to a ultra short pixie cut. They explained that this was better since the chemo would probably make her hair fall out and it wouldn't make such a mess this way. I remember being shocked but liking it. 

I missed being able to give my Momma kisses but at least we could scramble up into her bed and cuddle with her and get hugs. We'd bring her pictures we'd drawn to decorate her hospital room. And we always loved to see when other people would bring her balloons. She couldn't have flowers so if somebody forgot and sent her them they'd hold them out at the nurses station and we'd take them home with us at the end of the night. I liked that part b/c I loved fresh flowers but I sure wished I could share them with Mommy...

Then they began to talk in earnest of transplants. Momma needed a donor and a hospital. At the time there were only 3 hospitals in the country that did the transplant - one in Tucson, one in Seattle and one in Houston. At the time we lived in Phoenix and so Daddy asked the doctor, "Well, Tucson is closest... whats the difference between the them?" The doctor replied that, "Well, right now, Tucson has about a 13% sucess rate, Seattle is running 20% and Houston is doing 50%". My Dad stared at him for a minute and went "Ya know Houston sounds GREAT to me." 

I remember the search for a donor. They started by testing all of my Mom's brothers. Adam and Sam went first and neither was a match. They'd wanted to avoid putting Uncle Mike through the stress because he had a heart condition, but he agreed to be tested. By this point I'd caught on that if Mommy didn't have a bone marrow transplant that it was going to be bad. I wanted them to test me. I didn't care if it hurt. I was willing to do anything to save my Mommy. 

Momma was dead set against my even being tested. She said it hurt too much and she didn't want me to go through that. I was set and ready to be stubborn and fight long and hard for this if I had to but thankfully it turned out my Uncle Mike was a match. 

So now we had a donor and a hospital there was just one more major roadblock: money. The insurance company was refusing to pay for treatment. There was some sort of government assistance available but they didn't want to pay either and MD Anderson wouldn't let us come unless they got a down payment that was either 30k or 3k I don't remember. I was 8 at the time but I remember it was wayyyy more money than we had. My parents had always been on the verge of broke though they worked hard to provide for us but the medical bills quickly piled up and wiped out whatever was left of their finances. 

And so, I don't know who all organized it but they had a big benefit dinner to try to raise money for my Mom. A local grocery store donated steaks, family friends provided entertainment, and Kodak (my Dad was a professional photographer at the time) donated door prizes. I know the tickets were like 100 bucks each. We raised a ton of money with that dinner (I can't remember exactly how much) but it was still far short (less than half if I recall) of what we needed. 

Unbeknownst to me at the time, my father's child hood best friend, who was an attorney, sent a letter to the hospital and the governement and explained that if they continued to delay my mother's treatment while they quibbled over the money and she died that we would sue them for everything that the mother of two small children was worth. 

The day after the benefit dinner we got word from the hospital that they'd let us come after all and we only needed to pay less than half the previous amount in advance. I don't remember the numbers but I remember it was almost the exact amount we'd raised at the dinner the night before. It was a miracle. 

A small army of sisters from church came to the house and packed up everything. My sister and I went to live with my grandparents while Mom and Dad went to Houston. 

The day they left we went to the hospital early. Mom was in street clothes for the first time in months. They wheeled her in a wheel chair out of the hospital and to a waiting limo. I was so excited, I'd never been in a limo before. Daddy explained that taxi's had too many cooties and they wanted all of us to be able to ride together so they'd gotten a limo. I remember my Mom and Dad piling into a little leer jet complete with a small medical team to monitor Mom through out the trip. 

I hugged my Mother goodbye for what I was scared might be the last time. I had know idea if I would ever see her again. And then I stool next to my Grandma with her arms wrapped around me and I sobbed my little heart out as I watched the plane back up, and take off. 

Poison Extraction. aka: Leukemia part 1

I think this post is going to be one of many. There are things I am remembering that I haven't thought about for years. I read the intro to Aunt Becky's newest blog Band Back Together and I felt my chest get tight and tears start to form. Just the premise - a place to share, fully, completely and be safe. Maybe it could help somebody else. Maybe it will only help me. But either way I think some of these demons aren't as dead as I thought so we're going to start try to pull them all kicking and screaming into the sunlight. I'll submit them at the Band but they'll all be posted here for sure.

Some background before we begin- My Mother has had cancer 3 times. Starting with Leukemia when I was 8, Melanoma when I was 15 and Mucal Epidermoid Carcinoma, stage 2, when I was 20. My Father also had Lung Cancer (Non-small cell Carcinoma stage 1) when I was 22.

These are my stories:

It was spring. I was 8 years old. Mom found a couple lumps on her neck but we'd been digging in the yard the day before at the new house so she dismissed them as some sort of bug bites....

My parent's didn't want to uproot me this close to the end of the school year and so I would get driven to school every morning and then I would walk back to Grandma's house with my cousin Josh and hang out there until Mom or Dad could pick me up after work.

One day Dad came to get me, I can't even remember if it was early or late now but I remember it was out of the normal time he usually came. We had to go to the hospital. Momma had "collapsed" at work.

What I found out later was that what actually happened was that my Mom had been walking down the hall way at work (she is an RN) talking to some coworkers and had passed out. She'd shrugged it off as hypoglycemia getting the better of her. But then a few hours later while bending over a patient it happened again. This time they insisted on taking her down to the ER for tests.

We sat for 3 hours waiting on a single blood test. Turns out they tested it on 3 different machines and the results were so off they decided the machines must be broken so they called in a specialist to count it by hand.

I don't remember what the exact white cell count was. But I remember it was SO massively off what it should have been. Lots of extra zeros. I knew that was bad but at 8 years old I didn't know much else.

The next day, my Aunt Lois came to stay with us. I really liked Lois, even if I wasn't so fond of her cooking at the time (she's my organic aunt). Mom and Dad were just going to go get one test done and see a doctor and then they'd be home.

Momma never came home to that house. In fact she didn't come home again for nearly a year....

It was me, my little sister, Beth and my cousin Kaydee sitting in the living room floor watching Bambi of all the horribly perverse things when the call came. I remember Lois looking pale and repeating like she couldn't believe it "She's got cancer??"

All I knew about cancer at that time was the week before I'd watched one of those stupid hallmark specials designed to make you bawl your frigging eyes out and the lady had died of cancer b/c she'd refused treatment so she could deliver a healthy baby.

I turned back to look at the TV in time to catch Bambi wandering alone in the snow asking "Mother? Mother?" I swear to God I am NOT making that up. I jumped up and shut that TV off as fast as I was capable of. I couldn't watch Bambi with out FREAKING OUT for 10 years afterwards.... I still don't like that stupid film....

Lois explained that Mommy wasn't coming home that night. They were admitting her to the hospital straight away to start treatment. My Mother had Acute Lymphoblastic Leukemia (ALL). They even initially misdiagnosed her with another form of Leukemia, maybe it was wishful thinking b/c ALL in adults is bad. Like, usually they have enough time to diagnose you, admit you and then you die, levels of bad. Its more commonly found in children where it takes a much less aggressive course than it does in adults.

In a lot of ways, I look back now and realize my childhood ended in that living room that day. I have a lot more to share. And I will but I can't right now. Maybe tomorrow....

I am the child of a cancer survivor and this is my story.

PTSD

Lately I've had occasion to ponder a lot on PTSD (post traumatic stress disorder). I know several people who suffer from it. Some IRL, one or two online. I could possibly even consider myself to have a little bit of it.

But I guess the odd thoughts I've been having is about its evolutionary course.

That might sound strange, but this is me we're talking about.

I've had a really raw couple of weeks. Something about my Mom's 20 year bone marrow transplant anniversary and a couple other significant events in lives of people I love dearly have brought my emotions dangerously close to the surface. I seem to always be on the verge of tears. And I'm not a person who cries often so we've been pondering tryin g to figure out what our issue is.

My first thought in this random jumble I'm going to try to bring into a coherent train is this:

Flash Bulb Memory.

This is a phenomenon in psychology. Basically attach an intense emotion - good or bad - to an event and you'll remember it for ever. Some argue this is why women have such good memories because for them everything is emotional. Think about the CLEAREST memories from your early childhood. There is almost always a strong emotion attached to that.

In terms of evolution this makes perfect sense. Odds are good if it scared the crap out of you or made you blissfully happy its a good survival practice to remember whatever it is clearly so that you can avoid/repeat the behavior as often as possible.

Now make that moment the most intensely negative experience of your whole life.

We'll break it down to monkeys.

Mr. Monkey is living in the jungle doing his monkey thing. Mr. Monkey has a near death experience with a jaguar and nearly gets ate, he's badly injured but he miraculously survives. Over the coming weeks and months Mr. Monkey now jumps at small noises. He has little monkey flash backs every time he sees anything that remotely reminds him of the jaguar. He has nightmares where he relives the moments that lead up to the attack.

What possible good could this torture do him? Well, the smart monkey option is to remember as clearly as possible what lead up to that attack so that he can avoid it in the future b/c the smart monkey goal is to avoid becoming jaguar lunch. Now he's hyper vigilant and you can be dang sure no jaguar is gonna get the jump on that monkey ever again.

... assuming of course he doesn't condition himself to ignore all the stuff that makes him jump b/c he's tired of being afraid and then he gets ate.

Well... here's where life gets complicated.

#1. We're not monkeys. Our traumas are not often jaguar attacks. PTSD is most commonly associated in the public mind with war veterans, but they're not the only ones that experience INTENSE emotional/physical trauma.

Human beings with our so superior intellects, have invented all sorts of ways we can torture and traumatize ourselves that don't leave a single exterior scar. But that makes them no less real.

I think that PTSD is essentially flash bulb memory. Except in this case the flash bulb was a super nova. The traumatic death of a loved one. The severe illness or injury of ourselves or people we care deeply about, a parent, sibling or child. The loss of some one you care deeply for. Years of abuse where the terror and fear burn a pattern of pain deep into the psyche.

I think that PTSD is infinitely more common than we think about it.

And whats amazing is how much it can surprise you. You can have a severely traumatic event. One you recognize as a trauma. And you move on you think you work through it. You do the best you can. And years later all of the sudden you completely and totally FREAK OUT and you're left shocked and gasping.

What on EARTH just happened? Why on earth did I just react like that? I'm past this. I'm fine now. I have 1 million reasons why this should not bother me. But suddenly its raw and its fresh and its stripped down to the open wound that was there all those years ago.

Maybe if you're lucky it doesn't hemorrhage like it did the first time. Maybe if you're lucky you can staunch the bleeding much faster than the first time. But all of the sudden you discover the wound you thought was fine is definitely not gone.

I think that just because you know something in your mind, this intense, super nova flash bulb memory has burned that thought into the very fibers of your being. Your body doesn't care that the mind knows that everything is just peachy now. Your body knows that "a broken heart" isn't just a metaphor. Your body knows that it can literally feel as though its heart as been torn from its chest and put in a blender and it does not want that to happen again.


And so in spite of your super intelligent, evolved brains protest your body is going to have a Grade A Freak Out. The right trigger got flipped and here you are back again. B/c after all the years of training your brain you discover the body wasn't paying attention to the lesson.

The good news is that  you can deprogram this reaction, mostly, over time. You learn to anticipate it. You learn whats going to cause the freak out. And while you can't help the initial response, that core emotional shock wave, what you can help is how you react to it. Do you feed it? Do you fuel it? Do you toss a couple sticks of TNT on top of your little glass vial of nitro glycerin?

Or do you call the bomb squad? Take deep breaths, focus on recognizing the reaction for what it is and then attempting to control your physiological response through various relaxation techniques. Eventually the body can be taught that A+B does NOT equal "End of the WORLD". Your brain knows that. It knows that A+B is cancelled out by F, G, and H which negate the effects of A+B, but thats not how your body thinks.

Your body is primal and its memory is event driven. As far as its concerned A+B = Worst Thing Ever. Therefore anything that reminds it at all of A+B will lead to MELT DOWN.

So the bad news is, odds are even with years of work, A+B is gonna make the body a little twitchy. You're gonna feel those over tones of grief and loss and mind numbing terror. BUT the good news is, that A+B doesn't have to ruin your life, your year, month or even a whole day. A+B can make you have a bad spell that you recenter for a bit and then you're fine.

Bastard thing of it is, you can go years with out A+B causing a problem and then it just goes and sneaks up on you and the body goes... "OH! OH! OH! Its A+B!!! Its been a LONG TIME but we remember THIS IS BAD!! AUUUUGGGHHHH!!!"

And then you're almost back to square one again. Some how its worse if you go a long time between exposures. The familiarity conditions the response and the brain can jump in and short circuit before the body gets into full blown melt down mode. But go a long time and the brain is a lazy slacker. If you don't use it you lose it. So A+B shows up and the brain is busy taking a snooze at the desk while the body, like the primal animal it is sniffs the wind, recognizes its old foe and with out the brain to enter the disarm sequence, launches back to its old programing and freaks out.

I may be talking in circles here but I need to.

I think I had some PTSD in response to my mothers leukemia when I was 8 years old. Someday I'll tell you the whole story. But now I'm starting to wonder if theres any correlation between a PTSD freak out I had at age 12 and the onset of my clinical depression.... I never noticed the time line similarities there but they are definitely there. And now that I'm reliving my memories, as we hit the 20 year mark, I find that familiar tension in my chest, my eyes threaten to tear up and I want to curl in a ball and weep for my terror for my Mommy....

Its been 20 years. I should be fine. But some how there I am all over again.

I dunno maybe its partially the anniversary. Maybe its reading somethings from friends dealing with their versions of the nightmare, maybe its conversations with people I love dearly having their own version of this hell. But its intense and I'm just trying to breathe through it....

GO MOMMA!!!

20 years ago today.... I was a little girl who had just been on her first major road trip.


My uncles, along with some family friends, my sister, and I had driven the 20+ hours from Phoenix to Houston. I had no idea what to expect. I was so conflicted b/c in my mind Houston, Texas looked like a city from an old western movie and yet I knew Mom was there because of MD Anderson Cancer Center, which is the best cancer treatment center in the world. And I had such a hard time picturing this big fancy hospital in the middle of a town made of wood buildings and dirt roads with horses.


Turns out Houston was a lot like Phoenix only GREEN. I'd never seen so many green plants and rainstorms in my young life. And MD Anderson was mind numbingly huge and complex.


And my mother .... was a pumpkin.


That was my first thought anyway. When she had left Phoenix she'd had SOME small amounts of hair left. Now she was completely bald and the medicines they'd given her had made her swell up a fair bit and turn a little orange. Clearly, my mother was a pumpkin.


She was in an isolation room. I could see her through double paned glass and talk to her via intercom. I couldn't hug her or touch her. No one could. The doctors administered drugs to her through long plastic gloves built into the opposite wall and once a week a person in a bubble suit could come through the air lock to clean her room. Everything that came in had to be sterilized.


After 3 days of radiation treatments where she received the same amount of radiation that you would have received if you were at ground zero Hiroshima when the bomb went off, Mom had no immune system left. The littlest bug could kill her inside of a few hours.


I remember watching the day of the transplant. We were all gathered around the window. Momma was SO so excited. She held the catheter line up for us to see as they pushed in 3 BIG fat syringes of bone marrow in through the tubes that came through the wall. She gave us a big cheesy grin and a thumbs up!


We went to check on my Uncle Mike (one of my mother's younger brothers) who was her bone marrow donor afterwards. He had 6 little round needle holes in his butt. 3 of them on each cheek. He told Mom that now he can really say that she was a pain in the ass. (In fact until Mikey passed away 2 years go, every year Momma would call him and thank him for saving her life. And every year he would say "I love ya sis. You're welcome but you're still a pain in the ass" lol).


That was 20 years ago. And I still bawl like a pathetic baby every time I really think about it. I have no words to express how amazingly grateful I am to God, to science, to the doctors and nurses and to my Mother for being a fighter and going to hell and back so that I could grow up with my Mommy. I would not be a live today if it wasn't for her.


In so many ways I owe who I am to my wonderful amazing mother. You could not ask for a more loving and accepting, caring and compassionate person. Don't get me wrong - she'll kick your butt up between your ears if you really need it, but only b/c she loves you. I think she has done a SUPERB job of balancing being a mother and being a friend and that is not an easy line to walk.


For better or for worse, hers in the voice in my head. I found that out when I went to college. She's the one I hear, encouraging me, chastising me, reminding me and helping me.


She hasn't always been perfect but I can say this: Whenever it has been pointed out to her that something she has said or done was not right or hurtful or whatever, she never, EVER did it again.


As a kid, shortly afterwards I presented a picture to her transplant physician, Dr. Anderson (who just happens to share a last name w/ the hospital), it said in big crayon letters "Thank you for saving my Mommy's life". I want to say it again. Preferably through a mega phone from the top of a tall building, on the 6 o'clock news and on the front page of every paper in the world:


Thank you to every one involved in making it happen. Thank so much for saving my Mommy.


20 years baby. Here's to 20 more and many, many more after that!!!