IVF is BIG business…part 1

Infertility is one of the most painful experiences a woman will ever go through.  It cuts you to your primal core and you don’t leave without having changed in some way.  I may have had success but it doesn’t feel that way sometimes.  I’m unresolved, as they say.  But for many women in this world, there will never be a pregnancy or a baby shower or even a marriage once IVF has had their way with them.  These bitter, painful stories don’t get much mention in mainstream media or much sympathy, to be honest. How many times has a woman been told to “just adopt” or be happy for what you have? It could be worse, you could be going blind…..oh the comments.  And then the world celebrates the pregnant celebrity at age 50 with their gorgeous boy/girl twins. The words surrogate or donor eggs might be thought but they sure as hell aren’t getting spoken (unless someone outs them – which does tend to happen).  People bemoan the duty of said celebrity to speak about their journey “for the rest of us” but knowing how painful the whole procedure is, I don’t blame them.   So I get it, the public still thinks that they can have babies at 50 (yes, even my friends in their late 40s and early 50s are still on the pill because they are afraid their OH SO FERTILE bodies will get pregnant).  My point is, this isn’t a slam dunk.  Not everyone has success with IVF and you better believe that has plenty to do with the fact that ART is becoming as popular as the big mac.  Nobody wants to talk about the failures sure as our food industry doesn’t want to talk about what is happening to our bodies or to our children (THAT is another blog post for sure).  In IVF/ART land all is well and there is always hope.  Just like Disneyland – you only see what they want you to see – going backstage is a completely different experience (just ask my husband, he worked at Eurodisney straight out of college – I think the analogy is apt – he describes backstage at Disney something out of a correctional facility, by the way).

IVF is such big business because women are delaying their family building plans (for so many reasons from financial to career to plain old “I haven’t met a guy I want to have a telephone conversation with much less marry”.  The changes in our society are making some doctors very wealthy and the whole industry is getting bigger.  Bigger scares me. Bigger should scare you.

When I started this process (I was in the office of an RE two weeks after I got married), I was a doe-eyed, newlywed, an optimistic little thing with big dreams.  Dreams that were born when I was a toddler (thank you, Walt Disney).

In the beautiful offices of my new RE there were hundreds of pictures of babies and books about parenting on every table.  The entire place screamed “here are where your dreams are made”…I quickly formed an attachment with my affable RE that, looking back, was not healthy.  He was fatherly and spoke with authority. He made jokes and made me feel special…I knew that my future family was important to him.  Whatever this man said was like a word straight from the bible. I asked A LOT of questions and he reveled in the attention.  He told me about “this blah blah conference where I spoke on ICSI”..ladidahdidah. I was enthralled.  I took notes.  He also liked reggaeton. He let me peek into his life and I spread mine open for him to examine (figuratively and I guess literally not to be TOOO crass).  After months of “trying” ahead of my wedding, I was now going to escalate the process.  I was 37 when I married and the clock was ticking.  I was making it happen. I remember taking a co-worker with me to the clinic for monitoring and showing her the 8 growing follicles on the monitor – wondering aloud which would be my child or children.  My fear at that point in life was multiples.  I was terrified that I’d be having six children at once.  I never once considered that I would walk out of there empty handed. Like everything else I’d known to be true, I’d be a mother…that was a given, just as I’d go to college and meet a nice man and eventually have a dog and picket fence.  I’d already created my life long before I started living it, it seems.

In this clinic I started to learn a few of my first lessons in infertility and the business of disappointment.  The first lesson, looking back, is that I was an enormous dollar sign. I represented many, many potential dollar bills. They has assessed me – they knew my financials (where we worked, how much my husband made, how much I made) and they knew my desire was strong. They combined financial potential with desire and came up with an equation.  I was worth at least 3 climid cycles, 3 IUS and 7 IVF procedures.  Oh yes, my commitment was strong and I had really amazing insurance and back up cash at that point..  They started me off on Clomid and let one of my follicles reach 28 before triggering me.  28!  The other was around 24.  I started to get annoyed and thus began my studies in Google MD.  The next Clomid cycle was an interesting one.  I got pregnant but nobody gave me progesterone.  My level was a whopping 5 but I had a positive pregnancy.  Not viable, they said.  Quite likely because I was never given progesterone support.  I left that clinic and never went back – far short of their financial plan for me, that much I know.  I had no plan B for the first time in my life.  I vowed to do a bit more research for the next time. It was 2005 so things like vitrification didn’t exist (or if they did, they were not widespread).  PGD was around and things like CGH were but a hope….  My new boss found out that I was struggling and pulled me into his office. At the time I was working as the right hand for the COO of a very large investment bank.  My boss was extraordinarily success at everything but procreation, it seemed.  He gave me a number and a name of a doctor that would help.  His wife was currently pregnant with twins and they had been trying for six years until they went to the name on the paper. I walked out of his office and dialed the number.  Unfortunately they were full and would not be able to see me for six months.  I mentioned my boss’s name and suddenly the doctor was available to meet me that day – he would forego his lunch for me. It was only one lunch, after all.

Future told, my visit would enable him to eat about 20 years worth of lunches.  Yes, 20 years.

And this is just the beginning.

……a memory

My friend John

Written September 9, 2011 at 5:06pm

I could sit here and cry.  Wipe away tears and then start to cry, repeat, repeat.  But instead I’d like to honor one of my best friends.  We met in 9th grade.  He had a devilish streak and so did I.  He had the audacity to steal his father’s yellow car and I encouraged him and often rode shot gun.  We used to find six packs of random beers or wine coolers and drink them in the woods.  We made fun of our English teacher.  He and our friend Jennifer, used to call me out of class and ask that i come to the principal’s office.  Mr. O’Brien always bought it.

Then we graduated.  He went away to school and so did I but we both found our way back to our hometown.  His father’s death took a toll on him.  My indecision led me to Washington DC to study something random that got me a job waiting tables.  I forced him to move to Washington.  He confessed that he was gay.  I rolled my eyes and told him that I knew that a long time ago.  I dragged him to his first gay bar and we lived together like Oscar and Felix for a year.  He moved out one day. No notice.  He broke my heart.  We didn’t talk for awhile.  I moved to NYC.  I got word that he had moved there and reached out.  The years that we hadn’t spoken were like minutes  and soon we were back to old tricks only older and wiser.  He hosted elaborate dinner parties with china, steuben and lots of gossip.  I hosted dinner parties where everyone agreed to order in.  He and his long time partner Tom came to my wedding and were the talk of the town – I had to explain to the girls that they were not for sale.  When I threw my bouquet of wishes, John caught one of the flowers.  It was a perfect day and his presence and that of his sister, my dear friend Amy made my day even more special.  We were back together – oh how I had missed my friends.  In 2006 (Feb to be exact), we bought a house outside of NYC on ten acres of land.  A small log cabin that would later grow.  John was the first tenant and my co-decorator.  We spent weekend after weekend together.  It was during this time that I suffered many miscarriages and he was my rock.  Although he didn’t care to hear about the particulars of my female parts, he did listen and he cared.  One Saturday I had planned a big get together with all of our hometown friends. Unfortunately the date coincided with the transfer of four embryos into my uterus.  I joined the team up at the house and was treated like a baby.  “No walking up the stairs” – Tom and John’s orders.  “Leave mama alone” – nobody was allowed to stress me out, look at me the wrong way.  They took care of me….that weekend I did get pregnant and it was touch and go for a while.  My husband was traveling a lot – Middle East, etc. but I always had Johnny as my weekend log cabin companion.  When I went into labor at 31 weeks, it was John and Tom who sat with me in the hospital….my husband could’t take the boredom and headed to a bar.  When I gave birth, Tom and John were one of the first to hold our son.  My wee one…..he fit perfectly in their hands and a very memorable photo was taken of him resting in his palm.  Over the next 9 months, they were frequent guests at our house.  You would often find one of them asleep with my little one on their chest.  They called themselves his “fairy godfathers”.  They were greeted with screams of delight whenever my little boy saw them after any absence – even a week.

Lately John has been sick and I started a company so we’ve been trading phone tag rather than gossip.  I’ve been counting down the days until I could resume our life in NYC replete with long soaks in the hot tub at midnight, dinner parties at each others houses and more babies for the fairy godfathers.

There is more but for now, I have to do something other than cry and worry.  I have to tell you about my friend who I love and would find hard to live without….please send him strength.  I no longer believe in God – well, not the God that most people believe in.  Don’t fault me for it, I have my own beliefs.

I do know that John is one of the kindest, most humble and fun people I’ve ever known.  26 years is a long time to love someone.  I’ll keep doing it for the rest of my time – please let it be with him rather than without him.  That is all I want.

John died three days later  –  just as I was circling the airport, about to land and rush to his bedside – he went to the light. He was in his early forties.

Never forget what you have.  It can all go in an instant. Cliche but never were words more true.  I mss him each and every day and am grateful I had that kind of friendship once…

Why I have not done the transfer of my CGH normals

You might have noticed that I barely posted in the past few years beyond a helpful hello or rather lame attempt at advice. You might also wonder why I’ve started posting with regularity after all this silence.  The truth is that life kicked the hell out of me last year.  Not only did I nearly lose my family but everything I hold dear….it was a very bad year for many reasons.  As you know, I started a preschool in part to bury the pain of miscarriages but also because I love children. I didn’t want infertility to define me, I wanted life to define me so I set out with lofty goals and an insatiable desire to turn this sad, misery filled ship around (ie. my life).  Up until infertility I was rather happy go lucky – it wasn’t always like that though.  I’ve suffered from depression for most of my life (since I was 17).  I’ve been diagnosed with dysphoria but I mostly managed the blues with exercise or keeping my mind so busy I couldn’t think about existentialist crises.  After I met lupron, gonal F, menopur and spent what most people in the world make in a ten year period on IVF so that we could have our son, = life turned gray. Landmines were suddenly EVERYWHERE.  I was continually wondering when the other shoe would drop, what other terrible thing would happen because, after all, hadn’t it all gone to hell?  After I gave birth to my son I had a sort of disconnect, I was in physical pain, my anxiety shot up and I lost myself…and that was just the start.  Here I was finally a mother and all I could do was worry and focus on what negative things might happen.  I’m sure I appeared like a crazy person to my friends and family but they had no idea how to reach me or even where I’d gone.  My husband watched as my life became exactly as I imagined – a nightmare.  Miscarriage after miscarriage ensued and I was now in a race against time to preserve the few eggs I had. I’d turned 40 three months after my son was born and my clock was just about done ticking.  My AMH was .04 (LOW).  The final miscarriage (the little girl would be turning 6 in July of this year) was essentially my invitation to hell and I took it – that one way trip was all mine.  Two weeks after I had my D&C and a filled out a death certificate for my 9 week old fetus (thanks State of Georgia!), I bent down to pick up my child and suddenly could not move.  I was in bed for days and later found out that I had 2 bulging discs and one very degenerated disc in my back.  They recommended surgery and I was in pain all of the time and….. I had a toddler.  I had the surgery and then got back on the IVF horse.  Somehow I managed to get two amazing CGH normal embryos but then my ovary was punctured.  I was again put on low dose pain pills. The pills had made me feel ill so I didn’t take them often but I had to after this last episode or I would have likely passed out from the pain.  Three months later I stopped taking all medication, I was done, but they were not done with me.  I got very sick.. I was in bed for days, literally DAYS.  My body had become dependent on these “low dose” pain pills (something that I was told would NEVER HAPPEN).  I am still so angry about that bit of advice.  Mind you, had I waited few days I would have been fine but I was about to start a school and I could not feel that sick nor could nor could I be on pain medication while working with kids.  Instead a doctor gave me more medication which stopped me feeling sick and I resumed my life.  Since then I have been a very strong advocate against pain pills but that is also a topic for another blog posting.  Back to my embryos.  After beginning the school my periods stopped.  I have remained in a stress induced state for the past five years…and I’m not complaining. I absolutely LOVE what I do but I don’t know how to delegate.  The past year has been hard especially hard because my pain has returned and with it some complications – eyesight loss in one eye, some strange autoimmune type symptoms that cause the cartilage in my body to become inflammed – polychondritis.  I’ve mostly ignored the symptoms but now it begs to be looked at and treated but, I’m scared.  Meanwhile my home life was anything but perfect.  Working with my husband has been hard – but we do it.  The truth is that last year we nearly fell apart.  Between the stress of life and work it all started to come unglued and we both felt like we were not a team, quite frankly. Thankfully over the past few months we have found our way back to each other but it was not without considerable amount of work and we aren’t done..we never will be done.  Our “undoing” was born out of a combination of things and had more to do with all the unresolved pain that both of us felt – from losing so much but mainly from not taking time to water our “flowers” – the beautiful life we have and the reasons we were drawn to each other in the first place.  On Valentine’s Day I watched our wedding video.  Memories and feelings of love just flooded through me and then I knew as clear as day that not only could I never leave but I just don’t want to, ever.  Marriage is tough and but so is everything… We went through plenty but we can’t let it define us.  We aren’t two infertile people who have embryos on ice – we are parents to a lovely little boy who wants a sibling but will be just fine if he doesn’t have one because…he has a family.  An imperfect family but one that still has plenty of flowers to water. We also have laughter and so much love. There is more to this story but essentially as we enter springtime and “prune our proverbial garden” we are taking steps to rebuild the foundations of our marriage and of our friendship, I couldn’t be more excited nor more committed. So the next few months will bring news – it may not work but we are going to try.  Like my son told me once “we are a family of never-give-uppers”.  That much is so very true.

Egads, another post but this is about MUSIC

Before I got married and landed in the office of a Reproductive Endocrinologist (um, two weeks after my wedding but that is truly a story for another day – we don’t need to see the words “I digress” around here) I was a singer and a songwriter.  I tried, I tried so, so hard (under the name Suzanne Smith).  I loved every minute of it, I did. The photo shoots (yes, I had a real live record contract – three of them w/Polygram, Sony and Universal!). The guy who owned my label is Eddie O’Loughlin – famous for giving the world Salt n Pepa but so many others (including John Travolta!) – is one of my all time favorite people in the world.  I love that man like few others – he once told me that I was just too nice to be successful.  I think he was right.  But wow did I have fun trying!  I met coo, interestingl people, I wrote with Rick Astley (SUPER nice guy) and all kinds of artists from the 80s. I almost wrote with Lady Gaga back when she was just some girl….  I was photographed in closed down restaurants (Fez on Lafayette in NYC) and I was in recording studios almost every night of my 20s until the wee hours touching up vocals or rewriting lyrics.  I don’t regret a single thing.  Next Plateau/Universal still exists and Eddie is the head of A&R on the Voice television show.  We keep in touch. Turns out I didn’t really want to be famous – I just wanted to sing and to be loved.  Now I sing to kids and I am loved by my miracle 8 year old embryo…..so here is my new blog and one of my songs.  I’ll post the others in the coming days as a few of my preschool kids have asked to hear the songs…they were missing! Then just the other day I found them.  Kismet.  http://suzannesmithsongs.wordpress.com is where I will keep them for now.  I know, they are dated sonically but maybe Eddie will find “a voice” to record them and up they will go…or not. One thing harder slightly less difficult than IVF is the music biz – I don’t wish either on my worst enemy.  No offense to my record biz friends…. :) And if you know any 20 year old kids who have a great voice, send me an email. HEY, you never know!!!  Enjoy, I did….xo

The magic potion that rocked my female parts…

So, about a month ago I tried a “potion”.  I’d kept coming across articles and one day, while browsing the local CVS (I don’t know what is wrong with me but I can drop a few hundred dollars on air at CVS, DUANE READE, WALGREENS – lord, help me).  I digress.  So I wander from my favorite section (the enema section – more on that later) and see a list of magical pills and potions. I pick one up and see that it is not only the stuff I’ve been reading about EVERYWHERE (literally) but see that it comes in sublingual form so I was sold.  I took it home, put a big old dropper full in my mouth and let it sit there for 30 seconds.  It was around 6:30 in the evening and about 30 minutes later I was feeling UHMAYZING.  Did I spell that right?  I had energy, I loved the world, I wanted to conquer it!  No, this was not an oxycodone.  It was sublingual vitamin B12 and friends (ie. the other B vitamins that the world is talking about).  I have friends that get infusions and daily injections but not me, I’m taking this stuff under the tongue four times a day and the results are now officially amazing.

Today was the first period I’ve had in ages and not only was it back to the normal consistency (few clots – sorry, TMI gross factor) but it was profuse (just like the old days).  I have also been loading up on the Nori for iodine so the combo seems to have worked.  So my magic potion – just some sublingual vitamin b with extra 12 has changed my menstrual world and that is a good thing….  A bunch of you have written to me about building linings through acupuncture and I am ALL for that – I should have said that my advice is for those women who have tried it all.  Tamoxifen does improve most women’s linings and I’ve love to hear your experience with it and other methods – my RE claims to have had women get pregnant with a lining of 5 and doesn’t give much credence to numbers…but for me, I’m not transferring until I have at least an 8 with a triple stripe.  It will happen but first I’ve got a heck of a lot of work to do.  I’m going to be posting my idea diet for getting pregnant soon – I’m confirming that everything I write is correct first.  Have any of you tried the iodine test yet?  Please let me know what happened!  I have been getting your comments but keeping them to myself so don’t worry if you don’t want the world to read what you send me.  Good luck everyone and also let me know if you have try the potion and how it went….very curious if you have the same reaction.

Lining building

A number of you asked so the answer is tamoxifen – I know NYFI in NYC uses it and another RE I met recently told me that he would use it to help women with lining issues. If you want his hame, I am happy to refer. I do not know this man well (he is dating a friend) but has had 20 years experience and believes that the HCG booster and having sex prior to transfer helps prime the uterus to be more receptive. If you need the name, I will refer you – just make a comment (I’ll keep it private). I’d recommend this guy but not until I know he is as amazing as he seems. Seems like tamoxifen could help a lot of women with lining issues. Not sure why they won’t give it a try – heck, we did Saizen (growth hormone) off label and that worked like a charm for me (not so much for others, it appears) so why not go with tamoxifen if it works (and it appears to work well!

Time to share…..

I might not blog much but I’m always thinking, always researching and always talking about infertility, the science, the process and I keep my ear to the ground (I mean, I’m listening to A LOT of people). I need to post more about what I am learning because it seems, like so many other things in the world we live in, that information isn’t getting out there. People put so much trust in their doctors and the process that they don’t question why they have failure after failure. The internet is a dangerous thing – someone posts an article and it becomes the truth. Let’s take for example carrageenan (a substance used to thicken liquid – essentially a type of seaweed). There have been a number of studies linking it to inflammation (and inflammation leads to…cancer). What the studies do not tell you are that there are two types of carrageenan – and one is a heck of a lot more harmless than than the copious amounts of sugar one eats every day (which absolutely feeds cancer). I’m not saying the stuff is safe but the key is moderation and thoughtful research/discourse. Just because one person says something is true does not make it so. We have to become our own advocates and know how to uncover the truth. In our attempt to find a quick solution to something that ails us, pains us we often neglect the due diligence process. We get behind people like the Food Babe or Dr. Weil or anyone with the hope that their advice is going to fix whatever ails us. I’m getting somewhere, I promise.

It seems that there are a few smoking guns when it comes to infertility – diet and toxins that we are putting in our mouth are too big to ignore. Back in our great-grandparent’s time women started having kids in their teens and the AVERAGE age for their youngest child was 42. Plenty of woman got pregnant in their forties and there were no infertility experts back then nor were there petri dishes. Sure there were “spinster aunts” that never had children but the fact remains, the food was cleaner, the soil was full of goodness and pregnancy was far more dangerous to a woman than the items that they placed on their dinner plate. So the point of this FIRST topic on doing your homework is that you can’t trust anyone when it comes to your body. Not your doctor, not the internets, not me – nobody. You have to collect information like a scientist (and that is hard when you are feeling bat shit crazy on lupron) so I get it. I’m going to ask all of you who are struggling or even just starting this process to take a hard look at what you are eating and how you are living your life. Go and get a detailed nutritional panel to make sure you have enough vitamins and minerals in your body to sustain a pregnancy, get your uterus looked at professionally with a hysteroscopy by more than one person – because septums are a leading cause of miscarriage AND they are sometimes hard to spot depending on your cycle. And get a toxin panel (thank you, K) because many of you are running around with a high amount of nickel, aluminum, and all kinds of garbage that will either keep you childless or do damage to your fetus.

Try one little experiment – buy some over the counter iodine and rub a dab on the inside of your wrist(about 3 drops spread over a thin area of skin – about the size of your inner palm) Wait and see what happens. If that iodine disappears within six hours (per Dr. Bhatia of Atlanta) you have a deficiency – you really want to see it after 24 hours. Mind disappeared in 20 minutes. I’ve added a sheet of nori (for making sushi) into my diet and so much has changed. The point is that you cannot get pregnant if your body cannot sustain a pregnancy. Your fetus knows what kind of environment it will enter – a stressful, chaotic one, one in which there is little food for people who went through food deprivation and so on. The evidence is there that your mass of cells can decide if the environment is not a good one – if you don’t have enough folate for its development. So get yourself checked out by a naturopath. Make sure your body has what it needs to support a pregnancy. I’m going to list every single test that you should consider and why. In the meantime, get as clean as you can with your eating. I’ll share resources with you because I didn’t start this blog to hear myself talk – I want to help my fellow sisters (and brothers) in IF and help all of us work together to become parents (no matter how that happens). I’d also like to suggest that you do some research on the HCG booster – the evidence is looming that having an HCG shot prior to a FET primes the uterus to accept a pregnancy.

For those of you with uterine lining issues, write a note in the comments. I know a doctor who will help you build that lining using a drug that works – it is off label for building linings but many REs are catching on (just not fast enough).

I’m going to be posting more because I’m getting ready for potential transfer – but a lot of things need to happen first. I do believe in the power of intention and, on that note, I hope you will keep your thoughts positive and understand how powerful you are and how incredible your thoughts can be..if you believe something negative, you will attract something negative. I promise this happens to me ever single day and to you as well…..

Expect to succeed in this process but first, kick every tire. I’ll help lead you to some great articles and most importantly to the fact checkers, the scientists who are not paid off by Kelloggs or Coca Cola to tell you that something they add to their amazing food products is safe- but one thing – let me know when I am wrong. I have too many people reading this blog daily – literally thousands – looking for hope and advice and I cannot give out bad information. Expect to see a lot more of me – because what I am reading and experiencing is promising for the future and might help one of you. I didn’t go through all those shots and sleepless nights not to give back, and give back I will. Keep fighting the good fight.