Lisa R Waite/Infertility-Land
Infertility-Land
A Roadmap
Lisa R Waite
Copyright 2010 by Lisa R Waite
Smashwords Edition
A Year in the Life of the Infertile
PART THREE: The Emotional Toll of Infertility
The World Championships of IVF
Still Waiting To Start Our Lives
Infertility: The Most Selfish of all Disorders
Hope -- Our Most Renewable Resource
Second Only To Cancer Patients
Everything Happens For A Reason My @ss!
The Top Ten Things Never to Say to an Infertile
Infertility And The Bamboo Tree
Worry, Guilt, And The Burden of 'What if'?
What Finally Made the Difference?
PART SIX: Life After Infertility
~~
When the world says, "Give up," Hope whispers, "Try it one more time."
PART ONE:
YOU ARE HERE
~~
Dear Reader,
Allow me to introduce myself. My name is Lisa, and I am an infertility survivor.
I walked the long lonely road that you are walking now, and I came out the other side with not only my miracle, but strength, courage, and life lessons learned that have changed me as a person forever. It is a journey that took me to places I never knew existed, to feelings I never knew I had, to highs and lows and emotions the spectrum of the rainbow. And although I cannot capture all the things I learned, or all the emotions I felt, I will do my best to share a kind of roadmap of the way through infertility-land. But I must warn you, it isn’t a straight line. In fact, it swerves and zigzags and goes round in circles with what seems as no way out at times. But stay with me. Like the ancient symbol of the labyrinth, there is only one way in and one way out. Trust in the maze of your own infertility journey and know that even when all hope seems lost, even when it feels like you are lost in the dark with no way out, that you are being led by a higher power – this is your spiritual journey, the cross that you have been given to bear. And one day, you too, will make it out the other side. You are strong, courageous, and filled with more love and hope and strength than you know. You are just lost. And I am here to help you find your way home.
First, let me say, I'm so sorry that you that you had to buy this book at all. Suffering from infertility is one of the most lonely, devastating, and alienating things a person can go through. It makes me so mad when good people who just want a baby can't have one. It's not fair, and I know there are no words to express how deeply it hurts. It's so hard to look around at all the happy families when you are being denied your own. I understand how it feels to want to crawl into a shell and never come out. I cut myself off from so many family and friends, because I simply couldn't bear the pain, and even though I tried to be happy for them, it just hurt too much. It's so easy to cut ourselves off from people we love because they just don't understand. I know for me, I was in so deep, and didn't know how to climb out. After five long years of infertility treatments, over a hundred thousand dollars spent, and a shell of a self I once remembered, I came to my crossroads. Finally, I knew that I had to do one last cycle, with the best clinic and doctor in the country -- so that I could move on. I actually didn't think it would work. I hoped, but I didn't believe. But I needed to do it in order to let go, and be able to walk away knowing that I did everything I could. I desperately wanted a biological baby, but I knew I couldn't go on with fertility treatments much longer, but even still, letting go of the dream of our biological child was so painful that I needed one last cycle as a way of closure. And in doing so, all our dreams came true.
I was one of the lucky ones, for I made it out the other side. But I am well aware that not everyone does. And what’s worse, is that most people give up before they do. I wish this book could guarantee you success. It can’t. But it will help give voice to your deepest darkest feelings, it will help you to not feel so alone, and mostly, it will help to give you hope as you navigate through your own personal journey in infertility-land, and out the other side to a place of peace. When I was in your shoes, I desperately needed to find someone who has been where I was, and made it through to the other side. I desperately needed to hang onto hope that one day I would make it too. And that day has finally come. So now, I will be that person for you.
Each story of infertility is unique and painful and some are worse than others. But all of them have one thing in common: at this very moment you are afraid of never knowing the joy and fulfillment of holding a child of your own in your arms. At this moment in time, you don’t know where to turn, or what to do. And at this moment in time, you feel the vision for your life and dreams for your future fading away before your eyes.
My story was no different. I was almost 35 years old. I had been married to my husband for almost ten years, and we had been trying to conceive for five. We tried for two years, every single month before we admitted we had a problem. We researched the best fertility clinic in the area and did six cycles of clomid. Next we moved on to intrauterine insemination. We did 12 in total before moving onto IVF. We did three IVF’s with all the trimmings, before our clinic gave us a less than 5% chance on another round of IVF ever working – and gave up on us, saying they were sorry but there was nothing more that they could do. I was devastated. I was emotionally and physically and financially spent, and had resigned myself to thinking that my husband and I would never have a biological child. But as I tried to move on with my life, as we started the adoption process and were looking into egg and sperm donors, there was this little voice inside my head that wouldn't let it go. It nagged at me while I researched and talked to everyone I could. That is when my husband and I agreed that we would try one last time -- but since it was all out of pocket and it was truly our last hope, we needed to go to the best clinic in the country. We did our homework and came up with CCRM as the best chance for our last try. In my heart, I never thought it would work. I just needed to be able to find some sort of closure. And I knew that if I did it one last time in the best clinic with the best lab and the best doctor and it STILL didn't work, then I could walk away knowing that I did everything I possibly could. In the end, it just came down to needing to not have any regrets. I never wanted to look back and say what if. So even if my cycle at CCRM had have failed, I think I could have known that I gave it everything I had, and been able to find some sort of peace in that. And not only did I find peace, we finally got our miracle. So whatever your story, here is my best advice: Don't give up. Believe in yourself. Advocate for yourself. And always go with your gut.
I wish you much peace and happiness and a baby to hold in your arms at the end of your journey. But for now, while you make your way through infertility-land, I hope this book brings you some comfort. Trust in the higher power of the universe and allow yourself to feel, be, and know.
And never give up hope,
Love Lisa
~~
It doesn’t matter how you got here, the details are not important to finding your way back home. Your journey here cannot be changed, it cannot be altered, and it cannot be measured in miles. What matters is that you are here. Lost in infertility-land, looking and searching for a way out. If only there was a map, a large arrow that shows you: YOU ARE HERE. With clear roads and paths and exits to help you navigate your way out. But the truth is there is no arrow, no big letters, saying YOU ARE HERE. Yet, here you are. Lost in infertility-land. Your pain is real. And while there is always someone who has it worse, while there is always someone who has it better, this is your reality, your struggle, and it is real.
YOU ARE HERE.
You are standing in the center of your map. At the eye of the storm. At the center of the wheel spoke. You can feel the wave of change coming, the rain has stopped, the sky has darkened, and an eerie calm lingers in the air. You can almost feel the change in the air. Something is about to happen.
Do you stand still and wait it out?
Do you start to move?
And in which direction?
Do you cry out for help?
Do you fall down and cry?
Do you take cover?
Do you raise your hands and meet it head on?
Whatever you choose or don’t choose to do is your first step in your journey.
Stop. Listen. Feel.
Change is coming.
When you’re ready, turn the page, and take the first step…
~~
Sharing Your Journey
Infertility is often a lonely path, one many people choose to walk alone.
Some do not tell their families. Some do not tell their friends. Some tell them bits and pieces. Some tell them only what they need to know. But most hide out, in some form or another, feeling alienated from the world.
And it’s not until you break your silence, that your suffering starts to lift.
For me, I only opened up once I was on the last leg of my fertility journey. I was standing right where you are now. In the center of the wheel spoke. And I realized it was time.
I can’t say what prompted me to open up and let it all out. But when I did, I wrote a letter to the world. And it went like this:
“Where do I even start?
And why start now?
Maybe because it's been a long, lonely, difficult road. One that we tried to keep to ourselves, because hey, who wants to scream from the rooftops that they can't have a baby? Who wants to share all the trials and tribulations of peeing on 18 thousand sticks, being poked and prodded month after month, and scheduling love-making with a plastic cup in a sterile room? Not to mention all the crazy highs and lows, the days I can't stop crying, the pangs of jealousy, fits of anger, and of course the ultimate hole of depression (which I must admit, I've fallen into more than once.) The truth is, infertility sucks! And it just gets more difficult with every day that passes.
But we are lucky. We have friends and family who love and support us, even if they don’t really understand what to say or do. I’ve discovered a whole on-line network of women who are struggling with the exact same thing day after day that will commiserate with me in my hour of need. And we still love each other more than anything in the world. So even though we're nearing the end of this long miserable road, we still have a long way to go. And we're not hiding anymore. It is what it is. Warts and all. It's been over three LONG years of trying to conceive for us, and we have decided to give it one last shot.
We thought you might like to come on the journey with us....”
And now it’s your turn. Call a family member. Tell a friend. Start a blog. Give somebody this book. Or write your own letter to the world. Sharing your journey is the first step in finding your way to the other side. So go ahead. Let down your walls and trust in this journey.
YOU ARE HERE.
~~
A Year in the Life of the Infertile
It’s almost impossible to verbalize how the life of an infertile feels. Family and friends couldn’t possibly understand unless they’ve lived it. And the world seems to move on, without you, full steam ahead, while you are stuck, trapped against your will, in infertility-land. You want to try to explain it to them, yet you know they will never understand, so you retreat. The pain, envy, loneliness and heartbreak is too much to bear.
How could anybody but a fellow infertile understand that it’s only July, and you’re already dreading Christmas?
And it’s not just Christmas.
For
people struggling with infertility, the whole year is just one
holiday after another. The calendar year is something to be dreaded
as you become more and more isolated and shut off from the world
around you.
The year starts off easy enough...
New
Years
-- This is where we make all those resolutions, or in the case of an
infertile, their hopes and dreams and goals for the year ahead. We
tell ourselves that this is going to be our year! We are not going to
face another New Year's without a child. We are going to do whatever
it takes to reach our dreams this year. And we kiss, still crushed
from the year prior, but with a renewed hope for the year to come.
This is going to be our year -- it has to be.
Valentines
Day --
Finally, a holiday that doesn't remind us of children! It's all about
love. Only, we are pumped up on drugs, or so exhausted from
treatments, that it's hard to enjoy. Not to mention, in the back of
our minds, we know all those other couples, sitting around us, eating
their dinner, have children they get to go home to. Valentine's cards
to help them write out. Little hearts and chocolates to scatter
around the house in anticipation of little excited faces.
March
Break
-- On the heels of Valentine’s Day comes March break. Children
abound, as families pack up to enjoy a fun week together somewhere.
But not you. No, you plough forward, head down, trying not to
notice.
Easter
-- Next comes Easter. The stores are filled with reminders of
children. Everywhere you look is a reminder of what you are missing.
Easter bunnies, Easter baskets, Easter egg hunts. Pretty spring
children's dresses. Excited little faces and happy families are
everywhere. You long to be part of an Easter egg hunt of your own,
but instead, you close your eyes and hope you just make it
through.
Mothers’
Day --
As if Easter wasn't bad enough, Mothers’ Day is close behind. A
slap in the face to infertiles everywhere. You are not a mother and
you wonder if you ever will be. You do not get breakfast in bed, a
hand drawn card, a hug from that sweet little child telling you they
love you. It's a painful reminder of what you will never have, and
what everyone around you gets so easily. It's almost too much to
bear, as you watch others enjoy what you long for so badly.
Fathers’
Day --
Of course Fathers’ Day is right behind. Happy children and their
dads, out to brunch, playing golf, fishing, enjoying the day
together. You think of your husband and what he is missing. You can't
help picturing him as a father, knowing how good he would be. You
imagine your own children taking his hand and hopping up on his lap,
smiling up at him. Their dad. Their hero. And you can't help from
thinking how robbed he is, when you see the pain on his face.
Summer
Holidays
-- One of the best times of year for family fun. Kids are out of
school. Everywhere you look are happy families picnicking, going to
the park, the beach. And you long to be one of them. The carefree
days of summer are everywhere. Long weekends and camping trips.
Innocent times and bonding and memories being created that will last
a life time. Yet, you still cannot join in the fun.
Weddings
-- Of course, what would the summer be without weddings. You watch,
as other couples get married, knowing that soon, their dreams will
come true, and they will be blessed with families before you. You
think back to your wedding, how excited and hopeful you were for the
future together. All the family plans you had, the big house, the fun
family trips. And it's painful to watch it come true for everyone
else but you.
Baby
showers
-- Invites to baby showers come fast and furious. You can't even bear
to open the envelope. You shop for other peoples' children, holding
back the lump in your throat, trying not to breathe, and maybe you
will get through it.
Birthdays
-- Next comes your birthday. But you have nothing to celebrate. It's
just a painful reminder that you are another year older, another year
has passed without a child. Your chances are decreasing every single
day. And you can't bear to blow out your candle, yet again, and make
the only wish you have been wishing. Because it still hasn't come
true.
Anniversaries
-- Your wedding anniversary is upon you, and it's time to celebrate
your love. The one thing that keeps you going through all the pain.
But unfortunately, it's also an anniversary where you both will mourn
another year passing without a child. The family you haven't
created.
Back
to School
-- Back to school has become a season these days. You look around at
all the stores, all the little knapsacks, and school supplies. Your
nieces and nephews are getting older. Friends children are growing up
before your eyes. Life is moving forward without you. You can't help
but feel like it's completely passing you by.
Halloween
-- As the autumn leaves fall, families are huddled up carving
pumpkins together, making candy apples, playing in the falling
leaves. And Halloween rolls around quickly. Parents dress up little
angels, princesses, and monsters in the cutest outfits you have ever
seen. You dread the day as it grows darker, knowing that soon, happy
little children will be knocking on your door, saying trick or treat.
And you will barely be able to keep yourself from crying. You think
about everything you are missing. You long to be taking your own
children out from house to house. And you end the night, a puddle on
the floor, sobbing your eyes out, wishing you could hide away
forever.
Thanksgiving
-- The season of family is officially upon you. Happy families get
together to share turkey and rejoice in all that they have to be
thankful for. Just the thought of another holiday where you still
don't have your own family to share it with, tortures you beyond
belief. You have a hard time thinking of anything to be thankful for,
let alone, sharing the holiday with family and friends who have
everything you want. Everyone has a family except for you, and the
pain cuts so deep you don't think you will survive it.
Christmas
-- The climax of the holiday season is here in no time. The pinnacle
of holidays is finally here. Christmas is the mother load, the
holiday of all holidays. The one you have been dreading all year. For
it is the season of children and dreams and families and miracles.
For everyone but you. Little stocking hanging from the fireplace,
ornaments on the tree, hopes of Santa, snowmen on front lawns,
Christmas parades, hot chocolate, cold little toes and noses and
happy laughter fills the air. The stores bellow out Christmas music.
Commercials celebrate families and children. Movies are filled with
the magic of family. Christmas lights and Santa sleighs, and nativity
scenes are everywhere. Christmas cards arrive in the mail, all those
happy smiling family pictures and updates from friends and families.
The magic of the season is everywhere, all around you, suffocating
you, choking you to death. The pain has never been so great, so real,
and so deep. You envy everyone you see. You can barely venture out
your front door. It is the happiest season of all, a season you once
loved, a season you wonder if you will ever love again. A season that
now pulls you under with such grief that you are sure you will die.
But you don't die. You survive. As you brace yourself for the
upcoming New Year and the whole new calendar that comes with
it.
Every day is a reminder of what we don’t have, what you
dream of, and what we are afraid we may never have. With each day,
each month, and each calendar year, we see it fading away even more.
The calendar keeps going, the days keep ticking by, yet we are stuck
in the same spot day after day. Lost deep in infertility-land.
PART TWO:
THE NUTS AND BOLTS
~~
IVF 101
Most of you already know the ins and outs of IVF in more depth than you know the English language.
But
there may be many of you out there asking -- what exactly is IVF
anyway? What's the big deal? How does it work? And there may be
many of you who wish there was a manual for your family and friends,
the Cole’s notes version of what many of you have to go through on
a day to day basis.
So
for those of you who need to catch up, let’s start at the
beginning.
Simply put, IVF (In Vitro Fertilization), involves
collecting eggs and sperm from each partner and placing them together
in a dish where the sperm fertilizes the egg. Then transferring the
tiny embryo into the uterus where implantation and pregnancy will
hopefully occur.
Well that's the easy answer anyway. But for
couples going through IVF, the process is anything but easy.
Let's
start with the birds and the bees...
A woman is born with all
the eggs she will ever produce. There are approximately half million
or so eggs. The normal woman will ovulate one dominant follicle from
her ovaries each month that contains a mature egg inside. This egg
moves into the fallopian tube where it waits for sperm to come and
fertilize it. At least, that's how it happens for the lucky
ones!
The unlucky ones may decide to try fertility
treatments.
Of course, you don't move straight to IVF.
First
you try on your own for at least a year before a doctor would agree
to help. We tried for almost two, before we realized that something
was wrong and went for our first consultation.
Following that,
there is usually a period of trying fertility drugs, specifically
CLOMID, a drug that helps you produce usually around 3 or 4 eggs per
cycle, to give the sperm more chances. But again, unfortunately,
after six cycles, we realized that fertility drugs weren't doing the
trick and would need to move on.
Next comes the IUI
(Intrauterine Insemination). This is a process where the woman will
either take oral drugs, injections, or opt for a natural cycle. The
man then gives his sperm sample. The sperm is washed to remove all
the bad, slow, swimmers, and at the time of ovulation, is injected
directly into the uterus with a thin catheter. This process
essentially places the best sperm right beside the egg in the woman's
body, thus greatly increasing the chances of fertilization. Most
couples will try a couple cycles of IUI's before moving to IVF, and
in our case, we tried TWELVE, yep, count 'em, TWELVE, before deciding
it was time to move on.
Next comes the biggie. The mother of
all fertility treatments -- IVF.
So how does it work you may
be wondering?
Well, here's the basic rundown:
PART
ONE:
Preparation and Testing
This
is where the couple will interview their first, second, or third RE
(Reproductive Endocrinologist – your fertility doctor), depending
on where they are in the process. We, unfortunately, have failed 2
IVF cycles already, so our process was interviewing the best doctors
and clinics and researching the very best options left available to
us. This is the stage where if you are in your first cycle or your
third cycle, you will have tests done to eliminate and help shed
light on your situation. The couple will also start to prepare their
bodies by eating the right foods, taking the right vitamins, cutting
out alcohol, caffeine, hot tubs, and generally doing everything they
can to help prepare their bodies.
PART
TWO: Planning
and Preparing the Calendar
Next
the doctor will go over the IVF process with you, you will be
counseled on genetic issues, speak to financial counselors,
therapists, and ultimately discuss your individualized protocol with
your doctor. You will get your IVF calendar from your nurse, attend
injection training courses, order and receive your huge box of drugs
and needles, and start on the birth control pill if necessary.
PART
THREE:
Ovarian Suppression
Usually
the doctor will want you to go on the birth control pill for about a
month to quiet the ovaries and begin to suppress your reproductive
system. The pill can also help regulate your cycle and allow somewhat
flexibility and more control over your calendar. Now comes the part
that I hate! The Dreaded Injections. The doctor will usually put you
on a drug called Lupron, which is an injection twice daily. The
reason for lupron is to suppress your ovaries, turn off your system,
prevent cysts, and to make sure you do not ovulate. You will usually
take these injections, ideally, for anywhere from 7 - 14 days before
you start your stimulation medication. So that usually works out to
somewhere around 20 injections.
PART
FOUR:
Ovarian Stimulation
Now
comes the point in the cycle where you need to start making eggs --
and not just one egg, but lots of them! So at this point in the
process, you will get your period, the doctor will check your ovaries
with an ultrasound, and a few days later, you will begin your
stimulation injections. But just so you don't have too much fun, they
want you to continue to take the lupron as well, to keep you from
ovulating. The stimulation drugs are also an injection which you take
for anywhere from 8-14 days, and there is usually not just one, but a
combination of drugs -- so you will probably be taking 2 separate
injections of stimulation drugs every day. So between the stimulation
drugs and the lupon, this could require around 40 more injections, in
addition to the 20 you've already got under your belt. But, needles
aside, this stimulation period is the most important of the whole
cycle. This is where you make it or break it.
You may be
wondering why you need to make so many eggs -- doesn't it just take
one? Well yes, but it would be very inefficient to only have one egg
available to fertilize when you are spending this much money and
putting your body through so much. And many eggs do not make it, are
poor quality, or will not result in a normal embryo. Therefore, the
female is given very high amounts of drugs to try to stimulate many
as many follicles (eggs) as they can -- usually anywhere from 10 - 20
eggs as the optimal number.
But once again, it can never be
that easy, and this stimulation part of the program is a tricky line
to walk. Too many eggs, and the female may hyper stimulate, which
creates other problems and oftentimes leads to less healthy eggs, a
cancelled cycle, or hospitalization. But too few eggs, and the
chances are lower that fertilization and pregnancy will
occur.
During this process the doctor will monitor you every
couple of days with a blood test and a vaginal ultrasound to check
your hormone levels and count and measure the number of follicles so
that he can determine the most optimal time to retrieve the eggs. And
once they determine you are ready. They will give you a shot of HCG,
a hormone that will allow you to ovulate, and they will schedule your
egg retrieval for 36 hours after you take your final (and might I add
BIG!) injection.
PART
FIVE:
Egg Retrieval
Next
comes the egg retrieval surgery, which thankfully you are completely
asleep for. The eggs are retrieved from the woman's body, while at
the same time, the man gives him sperm sample into a plastic cup
(yes, I know, he's got a very tough job doesn't he?) After the
surgery they give you pain medication and send you home -- but no
rest for the weary -- you must start on new drugs that very night!
But more on that in a minute, for now, the hard part is done, so take
a breath.
PART
SIX:
Fertilization
Now
for the nail biting results. How many eggs did they get? Did they all
fertilize? Will they all grow? This is where the magic happens -- in
the lab. The sperm is collected, washed and placed together with the
egg to fertilize in a dish. Or in our case, and many other cases out
there, we opt for a procedure called ICSI, where a single sperm is
chosen and injected directly into the egg, allowing for even better
results, especially in the case of poor sperm.
Then, once
fertilization occurs the embryos begin to grow and divide. Your
babies are now growing in a dish! They are watched in the lab for a
period of 3-5 days where they are then ready to be placed back inside
the uterus.
PART
SEVEN:
Embryo Transfer
The
best embryos (usually 1-3 depending on their quality and the age of
the woman) are chosen to be placed back in the uterus. This will be
on the 3rd
or 5th
day after the egg retrieval, depending on several factors. The
embryos (or Em-babies as I like to call them) are then transferred by
your doctor using a catheter and ultrasound guidance -- as they are
gently put back inside their mother, where they belong.
The
whole process can be seen on a big screen and is an amazing moment.
Your embryos are now home! And now it is up to God.
The left
over embryos, if there are any, are frozen, and can be stored and
used for later cycles making the process less expensive and invasive
for the couple the next time around.
PART
EIGHT:
The Two Week Wait
And
just when you think you are done, you have a whole other set of
medications to take. Daily intramuscular progesterone shots are given
to the woman to increase the chances of implantation. Thankfully, I
have always been given the option of using suppositories, but many
women are not, and these shots in the lower hip, HURT! The woman will
have to take these daily shot for anywhere from 2 -10 weeks,
depending on the outcome. Tell me about it -- the fun just never
stops!
During this 2 week wait, you also take antibiotics and
estrogen patches and other various drugs. But the worst part about
this part of the process is the waiting. The two week wait is
complete torture as you analyze every twinge, every symptom, and
every possible sensation -- as you ask yourself the ultimate
question: Did it work? Am I pregnant? Will I finally be a mom? Will I
finally be a dad? And you question everything and start to worry
about what will happen if it doesn't work? All that time and money
and pain down the drain, only to have to start all over again or give
up. The rollercoaster of emotions and fears take over, as you wait
for two weeks to find out whether or not pregnancy has been achieved.
Then, finally, you go for your scheduled blood test, to get the much
anticipated results. And you wait for your doctor to call you with
the news.
Whew! I'm exhausted just thinking about it.
So
now you have an idea of how the whole process works, and you can see,
that it's not quite as simple as 'putting an egg and a sperm together
in a dish'. If only it were!
Those birds and bees sure do have
it easy, don't they?