Cheer me up

Anyone have any words of wisdom to pull me out of the dumps? Any jokes? Any anecdotes? 

Today is one of those days when I feel like I need a hug. OK, yesterday was one of those days too. 

Just feeling defeated and weak. Like I'm a fool for trying so long and fighting so hard. I don't know what I can expect out of one last IVF. I don't know if I'm being too hopeful by even proceeding with that one last IVF. 

Feel like I hate my life and everything around it right now. 

October 15

October 15 is "Pregnancy and Infant Loss Remembrance Day". This was passed in the United States House of Representatives as a day to remember our babies, and to support those who are remembering theirs. 

Please visit http://www.october15th.com/ for more information. A related site is http://www.rememberingourbabies.net. 

On October 15, if everyone lights a candle at 7 PM, and lets it burn for an hour, there will be a continuous wave of light across the world. I want to request all of you to please light a candle at 7 PM on Oct 15. Obviously I want to remember my babies, but there are so many of my friends out there who have lost babies - my friends in real life, through message boards and through the blogosphere. Also there are so many people we don't know who have lost babies. Our lit candles will be a tribute to those little angels in heaven. 

The months of October and November are going to be very hard for me personally. Many bittersweet memories of last year are going to keep coming back. I know I'm going to look at those ultrasound pictures a few times, and I know I'm going to shed tears a few times. I know it will be hard, but that just makes me so determined to get to CCRM and get that last IVF going! 

Last year...

I can't help but think of me last year around this time. I was starting my second IVF. Happily giving myself shots everyday.

I had started that round of IVF thinking that if it didn't work, I would stop trying. That was supposed to be my last hurrah. Till then I had never seen those elusive 2 lines on a pregnancy test. 

How life has changed since then!

Sometimes I wonder if it may have been easier to deal with the last year had I got a BFN in October 2007. Then I immediately think - No. I am so thankful for the outcome of that IVF. It brought us hope. It showed us what a positive pregnancy test looks like. It made DH and me collapse on the bathroom floor with huge smiles, and tears running down our faces. It gave me the confidence to go in for my beta with a little secret in my heart. For once I was not terrified of the result. 

In a couple of weeks after that - our first ultrasound. The first time we saw that tiny heart beating. Me lying there with tears running down the sides of my cheeks - into my ears. DH standing next to me holding my hand, tears filling his eyes too. Neither of us could say anything. Finally DH said "Thank you Doctor" to the RE. His response? "Don't thank me. Thank the higher power above us that made this happen."

We lost that little baby. But it brought us hope enough to try again. The next IVF ended in a chemical. But we still had hope. The next IVF resulted in an ectopic.

We still have hope. Maybe we shouldn't, but we do. I will probably never be the person I was before October 2007. The person before October 2007 was not a mom. I am. I am mom to 3 angels. I have 3 babies in heaven waiting for me to come cuddle them. I would never have had this hope and strength had that IVF not worked. 

Tagged!

I've been tagged by Lisa and now you must be subjected to 7 random / weird facts about me!

1) I pick up languages or nuances about a language easily. I understand five languages, out of which two I speak fluently. 

2) I have been wearing glasses since I was in 6th grade!

3) I can't sleep on the right side of the bed. 

4) I am the oldest of 3 children. I have a younger brother and a younger sister. My brother is 3 years younger, and my sister is 8 years younger than me. 

5) I love the sound of a piano. Piano music speaks to my heart. 

6) I went to the gym this morning, and then ate lunch out to compensate for any calories I may have burnt! :-(

7) I got Lo.ve Gu.ru on Net.flix today, and plan to watch it this evening. 

If that's not random enough - I don't know what is! :-)

OK, now I tag Shelby, Jewels, Darya, Melanie, G, Tori, Kymberli.

Yoga for Fertility

If the picture above is small, please click on it and open it larger. It is worth a read, because it is worth the laugh!

Darya sent this to me today, and it really cheered me up. This is my effort to pass the cheer along. This is a page from the website of the Yoga studio Darya goes to. They are called Pulling Down the Moon, and I wish they had a location local to me. This is the attitude we all need to deal with IF!!

I had a good laugh - and hope you will too!

Me outside this blog

Every time I click on "New Post" and my fingers come to the keyboard to start writing something on this blog, I am wearing my infertility cap. This blog has been my free therapist. It has turned into a place where I come and vent and rant about my feelings on and through infertility. It is my infertility diary. 

But that's not all of who I am. The same is the case for all you other ladies that write blogs about your struggles with IF or miscarriages etc. That's not what defines us! 

For those who know me only through this blog or our message boards, I am just that "Nikki who has tried for over 7 years to get pregnant, and has had 3 losses, and is now trying to start afresh at CCRM. Nikki has a T shaped uterus, and her DH has a reciprocal balanced translocation. Poor thing."

That is just a one dimensional view of me. One part of my personality and life. There is a lot of me outside this blog. 

If I read the posts I have written on my blog so far, and if I put myself in the shoes of someone who doesn't know me, it would appear that other than being infertile I am nothing else. And that's not true. 

This particular post is an effort to remind myself of who I am, while at the same time, letting people in on other parts of my life a little bit. 

I love a hearty laugh. I do. I have a big laugh and I laugh easily. I laugh at things I read, and during movies and while watching TV. Most of all I laugh when I am with friends. 

I am witty. I think of comebacks quickly and am quick to respond. I love to make people laugh at my witticism. I specially love it when DH gets a hearty laugh out of my commentary. Sometimes my retorts or comebacks have made guys blush, and that makes me feel a little bit out of line, but I secretly like it - that even they were stumped :-)

I am very emotional. I wear my heart on my sleeve. I cannot hide things from people. I am honest, open and completely transparent. I cannot imagine being any other way. 

I am non confrontational, despite being transparent and honest. I cannot and will not put my foot down and confront any situation which involves another human being. I will confront my failures and struggles on my own, but I will not "argue" or "debate" with another person. I am quick to adapt to and accept other's points of views. 

I have a Bachelors in Biology, and an MBA in Human Resources. I did not want to do an MBA, but I did it because my entire family thought I was best suited to corporate life. My personal secret wish was to pursue Biology and get a Masters in Genetics. 

(See the irony there? I should have gotten that Masters in Genetics - how useful that would be today, given the translocation, and chromosomes and everything I'm having to read and learn about now!)

I hated corporate life from my first job onwards. I realized very quickly that I get bored with routine work. I need to be doing something which challenges my brain on a daily basis. If not, I'm out. 

I enjoyed the last job I was at, but I quit because I wanted to focus on my IVFs and get control over the work stress. I had just miscarried and I was out of my mind with grief and stress and lack of control. 

DH and I co-founded a company, which we just launched. We hope to make it a company which challenges us, and becomes an employer that employees love. We want to make it the kind of company we always wished we were employed in. 

I love to cook and entertain. I absolutely love to cook for people and have people enjoy the evening. 

DH and I are best friends. In all honesty, I don't need anybody else in my life. I'm very fortunate that I have a husband who is also my best friend. I don't feel the need to have a girls night out, or go away from him to get a break. I don't feel the need to hide anything from him. He pampers me like a little baby, and I confess: I'm spoilt. 

I love dogs. Big dogs. We have a 3 year old German Shepherd - Simba.  He's our little baby. He came home when he was 6 weeks old. He is just the joy of our lives - absolutely unconditional in his love, and absolutely devoted to us. 

There's a lot more, but if I go on and on, this post will be way too long. 

I wanted to give my cyber friends a little picture of me and my life. I also wanted to remind my real life friends that I too had a life :-) and even though I'm underground right now, I do still live. I still laugh, and still joke and kid around, and I still hope. 

A lesson in EQ

It's very hard to have an infertile friend. It's even harder to be a friend to an infertile person. (It is the hardest to BE that infertile person.) You are required to have an emotional quotient much higher than is needed for regular friendships. Here are some thoughts that have been playing in my mind for a few days:

The scenario:

Party / Picnic / Some other sort of family gathering. People are there with their families. You meet someone for the first time and if you don’t see her fussing around her kids within some time of meeting her, do NOT ask:

“Do you have children?” or worse “How long have you been married? Do you have children?”
“When are you planning to have children?”

If the person has a significant other in his / her life, the person may be childless by choice, or may not have started TTC yet, or may be suffering from infertility. Whatever be the person’s reality, it is his or her reality, and none of your business to ask and know. If the person wants to talk about it, he or she will.

The scenario:

You run into an old friend / acquaintance after a long time. You have not been in active touch over the years. You are now catching up with your friend. Try to avoid questions that may make for uncomfortable situations. Again – whatever be the person’s reality, if he / she wants to talk about it, he/she will.

The scenario:

A friend / colleague has been married a while. He / she is childless, and you notice he/ she does not easily talk about children, or avoids get-togethers or baby showers. You also notice that he/ she seems to have many “doctor appointments.” This MAY be a person who is dealing with infertility (or maybe even some other disease) and is not comfortable talking about it. As long as the person wants to remain in the closet – let him/her be. You may be curious as hell and you and your other friends / colleagues may have come to some assumptions, but it is not polite to pry, even if your assumptions are correct. However, it would be a welcome gesture to just let the person know you’re there, and if the person wants to talk, you’ll be there to listen.

The scenario:

You know your friend / colleague is TTC. You know she has been seeking treatment. You know she’s frustrated, depressed, sad, angry, confused – all at the same time. DO NOT SAY/ ASK:

“Just relax – you’re stressing way too hard. Relax and it will happen”

You have no idea how much extra stress you just created in your friend’s life. She would not be seeking infertility treatment if she could cure it by “just relaxing”. Her doctor would not be trying to treat her, if she could “just relax” and get pregnant.
Infertility is a disease, and you’re lucky you don’t have it.

“Look at the positives in your life. You have a great marriage. Count your blessings – you’ve got so much to be thankful for.” OR “You’re lucky you don’t have children. You can travel when you want, you can sleep in when you want etc”

This just minimizes your friend’s pain. This just makes her feel like she’s exaggerating her angst. You wouldn’t tell someone who lost a leg in an accident that he does not need to buy shoes any more, and therefore how lucky he is!

“God means it to be this way” OR “This must be God’s plan”

DO NOT bring God or religion into the picture. You have no idea what the person’s religious thoughts on the topic are, nor do you know what the person’s current relationship with God is. In any case, God could not have come and told you that He means for your friend to be unhappy.

“It could be worse” or “Maybe it’s a sign that things will be worse on the other side”

You did not pause before having your child for fear of what could go wrong. Why ask others to? It’s her dream as much as it was yours to have children.

Don’t try to make light of the matter by changing the subject or joking about it.

You wouldn’t joke with someone who’d just lost a spouse, would you? You wouldn’t change the topic and joke with someone who’d just had an accident. Why treat your infertile friend as though her pain is “lesser” or “smaller” than anyone else’s?

Don’t offer any advice unless you’re asked for it. Don’t judge. Don’t decide for your friend. She is suffering from a great deal of mental trauma. She is obviously researching all her options and making informed decisions. She and her partner will decide what’s best for them. What may work for you may not work for your friend.

Don’t offer stories of “hope” for your friend “I know this girl – she tried for 8 years, and then adopted – within months of the adoption she got pregnant naturally!”

Yes – we all know those kinds of people who got pregnant after all the world’s doctors could not get them pregnant. But that was them. That may not happen to your friend. It just reminds her how much worse off she is at present.

The scenario:

Your friend has just got news of a BFN or has just lost a pregnancy / baby.

DO NOT try to take her mind off of this by joking. After my first IVF failed, someone actually said this to me “Never mind, now you can party! Finally you’re no longer “not drinking” and “not feeling well”!” (Not in those exact words – but you get the picture)

“At least this means you CAN get pregnant” or “The baby must not have been normal” or “Never mind, you’ll get pregnant again”.

At this time, NOTHING you say is going to make the person feel better. The best thing to do is to say you’re sorry. That’s it. You don’t have to say anything else. But don't disappear and not say anything either. 

Don’t try and change the topic and talk about “other” things. Someone asked me “How is your knee?” while I was talking about my 3rd pregnancy loss, the one that ended up being ectopic.

If your friend is talking to you and revealing the feelings in her heart, it's because she thinks you'd understand. Please understand how difficult this time is for her. Please understand how very hard it must be for her to tell you what's going on. If she has decided to open up to you, do NOT be insensitive to her. She is very raw right now, and she cannot deal with jokes or innuendoes or trivial talk. 

"Why don't you just adopt?"

Adoption may be the answer for some people, but not necessarily the panacea for every infertile. Rest assured that she has probably researched every topic around building her family. Nobody asks a fertile couple to adopt. Why is it the "responsibility" of the infertile to give a home to those babies? Different people have different view points to having their families. For some the experience of pregnancy is a must. For some it is the desire to experience child-birth. For others it is a desire to have a child in the house. Everyone makes their decisions based on their own preferences. 

The scenario:

You are pregnant. Or you are having / hosting a baby shower. Or you've just delivered a baby. You are aware of your friend's infertility struggles.

Do NOT exclude her. Inform her and leave it up to her.

Tell her you understand if she cannot come, and in reality, please try and understand that she cannot attend. It's not because she is not happy for you. It's because she needs to protect her already bruised heart. She will deal with the information and come around as best as she can. When she feels like she can deal with visiting you and seeing your baby without breaking down, she will come on her own. 

The best thing that a friend can do, is be patient. Maybe read up a little about what your friend is going through, so you understand the pain and the procedures and the chances. Be there if she wants to cry, but don't judge her for crying. Don't offer suggestions that are not thought through. She is dealing the best way she can. Don't make her feel like she needs to deal with things better. Don't offer introductions to people who have gone through similar experiences, in the hope that your friend will "learn how to deal" the way they did. 

Infertility sucks big time. It is painful, and heart breaking. It is draining emotionally, financially and physically. If you have a friend that is infertile, please be sensitive to her. Just try and be there for her. 

I am fortunate that I have some friends who are standing by me. I have also had the unfortunate experience of shutting out people from my life because I felt they did not respect my pain, and trivialized my trauma. At this point, when one has lost so much, one is really beyond caring. It becomes very very easy to isolate and shut people out. If you care for your friend, don't let her shut you out. 

Comparisons

Here is a 3d ultrasound image of a normal uterus:

And here is a 3d ultrasound image of a T shaped uterus:


My uterus also has an indentation on the top. In other words, the roof dips inwards. 

The space does look small. In my roof-dipped T shaped uterus, the space is even smaller. I think my mind is getting made up. I will do the surgery. Because I know that if I don't do this now, I will always regret this later, and wonder "What if....?"

Infertility is...

I've been thinking about the impact of infertility on our lives, and what it really feels like to be in an infertile person's shoes. Here are my thoughts. 

Infertility is:

• Watching DH pick up our friends’ children and play with them and the tears in my eyes, the lump in my throat and the gnawing fear in my heart that we may never have our own child.
  
• Seeing DH kiss the picture of the embryos that the RE gives us during transfer – knowing that this may be the closest we will ever be to seeing our own children.
  
• The sadness in DH's eyes at a BFN, or during a "not good news" ultrasound in early pregnancy, and knowing he will not say anything, because he does not want me to feel worse than I am feeling already.
• The hugs that DH gives me following a BFN or a loss, creating the shelter of his arms where I can sob and break down and cry for hours. 
• The lost relationships and friendships that could not stand the test of our ordeal.
  
• The loss of the innocence and pure joy of a surprise pregnancy, or a naturally achieved pregnancy.
  
• The sadness and bitterness that comes with the realization that no one – NO ONE – gets what I’m going through.
  
• The real reason behind why I don’t ever ask my friends how their kids are doing.
  
• Having nothing to contribute to conversations which center around babies or children and feeling singularly left out and awkward.
  
• Resorting to being isolated and staying out of touch with people because I don’t want to be asked questions like “Do you have children?” or “When are you planning to have children?”
  
• The indignity of all the tests and the procedures and the failures I have endured
• Not cured by adoption. Childlessness is, but not infertility.
  
• Something that envelops every other facet of my life and takes away from the joys of our otherwise normal lives.
  
• Not being able to go to the baby section or maternity section of a store and not being able to bring myself to attend any baby related events
  
• Feeling jealous when a friend or relative announces a pregnancy, and at the same time feeling guilty for feeling jealous. 
  
• Imagining what our baby would look like, and not help wonder if the picture will remain in my imagination only. 
  
• Not being able to watch even commercials on TV that feature little babies or baby products.
• The tears that run down my face when I hear certain songs on the radio
• The realization that even if and when I do get pregnant, I will be on edge and freaked out till the very end, and I will NEVER be able to sit back, relax and enjoy the pregnancy.
• Realizing the far reach of infertility. Our families are affected by it. They have to deal with questions from their friends, and they have to live through their friends' descriptions of their grand-children/nieces/nephews, and not have anything to say in return. 

What I’ve gained from my infertility experience:

• A complete clarity and  knowledge of who our real friends are, and who were there only when the going was easy.
  
• The comforting knowledge that DH and I will weather every storm in the world and never flinch – our love will see us through everything.
  
• The realization that come what may, hope is one thing I will NEVER let go of. 
• A clear understanding of who I am, and what I really want out of life, and how far I’m willing to go for it.
• An experience that has made me so much stronger.
• The confidence that if we do have a baby, we will embrace the sleepless nights, the hard work, the trials and tribulations of parenthood - because we've wanted it so badly and for so long, and because we didn't get it easily. 

Please feel free to add to this list - I'm sure there are many many experiences out there that I haven't had or have had, but haven't thought of. 

Match made in heaven

Just a thought....

DH and I were meant to be. Match made in heaven. Made for each other - you get the drift...

Think about it. If he had married some perfectly fertile woman with a perfectly functional hormonal and reproductive system with a pretty uterus, she would have been really pissed (ok, unhappy) because she'd have to deal with the translocation issue and suffer through it. 

If I had married a perfectly reproductive man, with good looking chromosomes and functional ducts and everything, he would be pissed, because my uterus is the way it is.

We have spared possibly one normal fertile woman, and one normal fertile man the anguish of infertility!

And this is not the only reason I'm happy to be married to him :-)

The circle of life

I've been trying to read up about my T shaped uterus, and I'm realizing its such a rare condition to have. Mostly, T shaped uteri were attributed to fetal development issues for women that were given the drug DES during their pregnancies. DES was pulled from the market in 1971 in the United States. Facts:

• I was born in 1971. 
• My parents don't live in the United States. As far as I know, my mom did not have DES when she was pregnant with me, but who knows what other forms of drugs were being administered to women in 1970/1971 in the part of the world I was born in. There is no documentation. 
• There are some cases of T shaped uteri in women who were born after 1971, after DES was pulled from the market, thereby proving that some cases occur naturally too. 

It would seem that I was born with this uterus. My legacy. 

It would seem DH was born with his translocation. His legacy. 

People grow up, have children, and spend a large part of their adult lives measuring their achievements by milestones provided by their children. By their children's achievements. Birth of the child, first smile, first step, first word, first day at school, graduation, college etc. 

Our parents did that too. They prided themselves over each award I won in school, each medal I won on the sports field, each play I took part in, every extra-curricular activity I did. They came and proudly attended those plays, and award ceremonies, and felt accomplished in my accomplishments. DH's parents - pretty much the same.

Parents bring up their children, nurture them, provide for them, love them, educate them, guide them, help them make decisions, and then let them loose into the world to lead their own lives. 

Now it is the children's turn to have their own children and start measuring their milestones through their kids. In DH and my case, for no fault of ours, or our parents, our circle of life suddenly is off track. Not so much a circle, right now an arc. If we ever have a child, maybe then it will be an elliptical. Never a circle. 

When my mom was 37, I was 14 years old. She had 3 growing children at my age. I am struggling to have even one. 

We didn't do anything to be where we are. No poor lifestyle choices, no abusing our bodies on the name of entertainment - nothing. So many people that suddenly run into the wall of IF run into it without any knowledge of it coming up. 

For years we have endured the loving and affectionate, yet heart-wrenchingly painful questions from our parents "When will you start thinking about having a family?" "When will you give us good news?" We endured it, until we "came out of the closet" and told them what we were going through. 

I wish we could bring that circle of life to the point where it started, and continue the cycle. Note our children's accomplishments, and be proud of them. The complete helplessness of not knowing when this ambiguity will end is just plain deprivation. 

Closure. The heart needs closure. 

The story inside my heart

So we've spent a couple of days processing the learnings from CCRM. My feelings? Completely mixed. The Babychaser put my feelings into words very well on her comment to my last post. 

That's exactly how I feel. I'm relieved that we got some answers, so something came out of the time and money and emotions invested in seeing a THIRD RE. I'm curious, even disappointed to a certain degree that Dr M didn't find this out. He too had done a hysteroscopy last year on me. How come he didn't see it? Everyone - right from my OBGYNs to the first RE clinic (where they had at least 5 practicing REs), to this clinic, where Dr M practices - everyone has always just mentioned the "indentation" at the top of my uterus. Everyone has always brushed it off saying, it's too broad,  it's not a septum, and therefore really can't be fixed. 

After 4 IVFs, 2 D&Cs, a couple of HSGs, SHG, 2 hysteroscopies (and 3 losses) - I'm just a little stunned that it took them SO LONG to say that even the rest of my uterus is not normally shaped! I can't help but wonder who to trust. Logically it seems like we should just go ahead with the surgery. If it fixes things, and "cures" our IF, nothing like it. (I wonder if IF ever gets cured though. I would think that even if and when one does have a child, the pain and anguish of years of IF will remain forever - so does IF ever really get cured?) If surgery doesn't help, then we're not much worse off than we are today. 

Emotionally - despair. How much more? How much longer? How many more hoops and loops? We started this in 2001. Its coming to the close of 2008 now, how much more??? People who started TTC much after us now have 2 children, children that are going to school now, and lives that have gone on skippily normal. 

Why is it that we have to find issues which are not "common"? Dr Schoolcraft - being one of the most skilled and highly regarded doctors in this field said "Your case is grey to me. I can't say it won't work at all - and if I thought it wouldn't, I'd tell you. But I can't say that it will work. The best we can do is try this surgery route" 

Why can't we have more easily fixable problems? Why is it that we have to deal with a balanced translocation affecting one party and a screwed up uterus affecting the other party? Why????

I'm not nervous about having to deal with surgery. I've done that many times before, and from the description of it, this one actually sounds easier than most of my other surgeries. (I've had 4 surgeries on a busted knee, which still gives me pain and acts funny - (I've stopped even bothering about it and going to my Orthopedic Surgeon), I've had laparoscopy, and of course 4 retrievals and 2 D&Cs and the whole IF joy ride). So surgery is not new to me. 

But I'm feeling a deep dark sense of despair and hopelessness. I'm feeling like my body has failed me yet again. I'm feeling sorry that DH got stuck with a "defective piece" like me (I know all of you will say "But he has a translocation himself" - I know that, but I'm still feeling defective)

I sometimes feel like running away from it all, to some safe place, where I'm not so vulnerable, and so sad. I wish I could escape from the reality of my life. 

I sometimes see a baby's face in an ultrasound type image when I close my eyes. It's not a face really, but just a view of one eye. The eye looks at me, and then slowly closes. The picture then fades away. I don't know what that means. Sometimes it comforts me, like these are the babies I've lost. Sometimes it scares me, like a dream of having a baby is slowly fading away. 

I want to keep the hope alive, but I'm scared to. 

"Progress" report....

We're back in CA after our visit at CCRM. First things first - both DH and I were VERY impressed with CCRM. Completely state of the art, completely contemporary, very courteous staff, very professionally managed place! It seems pretty evident that the nurses, genetic counselors, coordinators - everyone they hire, is just top of the line! Very very impressive!

In this post I will list the findings from today. We will talk about my feelings and emotions later in another post.

• The sonography tech. who did my 3D and Doppler ultrasounds seemed to try to "get the right angle" during the 3D u/s a lot. I asked her if all was well, and she said "Your lining is thin and I'm not able to get a pretty picture for the doctor to look at. I'm trying, but the lining is pretty thin". That really would only mean that I am early in my cycle. So nothing to worry about. She mentioned that the blood flow to my uterus seemed pretty good, and that the Dr would discuss everything in detail with me.
• The genetic counselor looked at our PGD reports and said she had seen very few couples with such high abnormal embryo rates. She was surprised that we were getting so many abnormal embryos. She mentioned that the head of their lab is trying to talk to the genetics labs to figure out if we can use CGH or Microarray instead of the regular FISH PGD on our embryos. They are going to find that out and let us know. The one interesting thing she asked was if we had ever had DH's boys go through FISH testing for aneuploidy. We haven't. She thinks it may be beneficial to know what percent of DH's sperm is unbalanced. That way we will know if our PGD method is working well or whether it seems to be giving us false negatives. They have included the aneuploidy test on DH's sperm sample and will let us know the results. 
• Dr Sch did my hysteroscopy - he is unbelievably skilled! I did not feel the speculum at all! I did not flinch even once! The procedure was the usual - mildly uncomfortable, but nothing to complain about. But he didn't say much doing the procedure. He just asked me to come to his office for a regroup. 
• During the regroup, came the revelations. So my uterus is "funky" according to Dr Sch. What he means is, I have a strangely shaped uterus. Usually, women have a triangular shaped uterine cavity. Sometimes women have a septum or some other anomaly which may be fixable surgically. Some women have a T shaped uterus, where the uterine cavity is shaped like a T. Most specialists would not attempt to fix a T shaped uterus because there isn't much room to "cut" or "snip off" anything. Dr Sch says he has worked on trying to fix T shaped uteri in 15 cases. 
• Here is the killer - my uterus is not only T shaped, it also has a dip on the top - like the other doctors have told me. So, in Dr Sch's words, my uterus is "tiny". Being that it is not septate, or has nothing protruding in it which can be simply cut off, there is really no way to correct it. However, Dr Sch wants to attempt to surgically try and increase the space in my uterus. Scrape a little of the top indentation, scrape some of the sides to widen the space, and then put a balloon in my uterus for a while, so it doesn't develop scar tissue and fuse back. He's not sure it would help, but he wants to try. 
• So we're not dealing with one issue here. We are dealing with a couple of rather unusual issues. DH's balanced translocation, and to top it, my "funky" uterus.  He said if I had a Fertile Myrtle family member or friend who has a perfect uterus and offers to carry a baby for me, maybe I should think of that (It's a whole different matter that this scenario could be extremely complicated). But if I have to think of gestational carriers in the traditional manner of searching through an agency etc, then we should try with this surgery option and do one last IVF as our last hurrah. 

We obviously have lots to talk about. Chances, percentages, risks, costs, coverages, etc etc etc. I will post the story inside my heart in a separate message soon. But for now these were the facts that we found out today. 

For those that remember that I was worried my paperwork had not reached them from my current clinic..... I was right. It was my stupid gut that said it, and I saw for myself today. My current clinics records department has sent only a very cursory "summary" kind history to CCRM. Get this - this "summary" did not even mention my 2nd and 3rd IVF!!! No record of my stim protocols, my responses, outcomes - nothing - nada!!! Dr M is a sweetheart - DH and I love him as we love our own dads! His clinic is awesome - the nurses, coordinators - everyone. But they are part of a large hospital, and the records department is another thing altogether!! 

Big bone to pick - some people are going to get some interesting phone calls from me tomorrow. They're probably sleeping peacefully right now, oblivious to what awaits them tomorrow! 

Denver....

So here we are in Denver! We arrived - had a little glitch with the car rental, paid up extra and got a car, and are now checked in, and internet enabled! :-)

This is just a quick note to let everyone know I'm trying to keep my excitement up for tomorrow. 

My next update will be more juicy! I will know more when I blog again!

Tori - I'm in your neighborhood - so a special shout out to you! 

--------Update-----------

BTW: The cross-street of the hotel we're at is called "Progress". I'm taking that as a sign :-)

So tired.....

I'm tired of being infertile. I am. I really am. I'm done, and I'm not enjoying it any more (OK, I never enjoyed it, nobody ever does - but you know what I mean)

I'm tired of going onto the message boards and finding new people with questions. It strikes me real hard when I can count the "oldies" on the fingers of one hand. All the others have come and gone (mostly gone on with pregnant bellies). I'm tired of having most of the answers because I've been there at some point. Now I don't even feel like answering any more. I'm just plain tired!

But there is always a little ray of hope that keeps me going. I'm back to hoping again. I'm hoping my trip to Denver brings me some major revelations, and suddenly we're able to boink our heads and say "Of course!!! Why did we never think of that???" Or "Of course - how come Dr M didn't think of that???"

Chances are, there won't be any major revelations. I'm just hoping my self out into a vulnerable spot again, to let myself be disappointed. Do I sound bitter? It's because I am. I wasn't, but I am now. Extremely "bittered" by everything that I have gone through and everything that I have lost. 

I'm not going to say much - I don't want to jinx whatever hope I have for Denver. I want to go with a blank canvas (or one that has been painted white over what was an extremely messy black and red canvas!)

Countdown...

We leave for Denver on Wednesday and I'm beginning to get real excited! Tickets done, hotel and rental car booked, all set!

Poor Simba gets a raw deal when we go off like this. He has to go stay in doggie day care. I'm sure he has fun there because he's completely exhausted when we pick him up, but we like to believe that he has the most fun with us! 

Not much else mulling in my head right now - the highlight of this week will be the Denver trip and hopefully the answers we will get from the doctors there!

Balancing your chances with a balanced translocation

From the time we discovered DH's balanced translocation, it has been a constant topic of research and discussion in our house. On one hand we were really excited to finally have SOMETHING which could point towards being the reason for our IF struggles. On the other, it really hit us as being something not fixable.

As we talk to people, we realize that this is a topic most people have no clue of. And why should they? Unless you're in the research field working on chromosomes, or unless you have been directly hit by 2 translocated chromosomes at some point in your life, you wouldn't know what they are and the impact this could carry.

What is a chromosome translocation? It is the re-arrangement of parts between different chromosomes. There are 2 types of translocations:
Reciprocal (the kinds DH has) and Robertsonian.
Further, the translocations can be Balanced (where the total chromosomal material is not impacted) and Unbalanced (where the exchange of chromosomal material is not equal)

DH has a Reciprocal Balanced Translocation on his 11th and 22nd chromosomes. This means a part of chromosome 11 broke and got attached to chromosome 22. An equal portion of 22 broke and got attached to 11. This means DH's chromosomal material is complete - he is not missing any genetic information, neither does he have any extra.

Here is an image

We carry 2 sets of chromosomes - one set from Mom and one from Dad. When a sperm or egg is made, it comprises of 1 set of chromosomes, and fertilization is what completes the 2 sets. 

In the case of a balanced translocation chromosome carrier, there are chances that his / her gamete (sperm or egg) COULD be balanced or normal, or could be unbalanced. Here is an image which shows the probability:

This is the normal / standard probability. However, individual numbers or rates would vary.  For example, in our case, we seem to have only 1 in 10 embryos turn out normal / balanced. So our rates don't appear to be the 33% that shows up in this diagram. In our case we fall in the low 10% category. 

(Please Note: This image shows a translocation on both arms of the chromosome. DH's is single arm - so his percentages may differ - I'm still looking for an appropriate image to post here)

.16% of the world's population (1 in 625 people) carries a translocation. In most cases translocations go undetected until this person experiences infertility / multiple miscarriages, or has a baby with birth defects which are chromosomal in nature and traced back to parental karyotypes. 

If a couple gets pregnant with an unbalanced embryo, the woman will most likely miscarry the baby. In some cases, pregnancies do carry on to full term, and the couple may have a baby which is severely disabled in multiple ways. 

The way we can bypass this is by subjecting our embryos to PGD and selecting only the normal / balanced ones for transfer. Some studies say embryos formed from gametes of a balanced translocation carrier could be more pre-disposed to aneuploidy. We don't know that for sure yet. 

It's been a fascinating and at the same time extremely daunting and scary topic to research. Today I found an article which talks about the EXACT same translocation that my DH has, except in this case it is the mother who has the translocation. So her karyotype begins with 46 XX and DH's begins with 46XY. The rest of the karyotype is exactly the same. This poor woman had a baby with an unbalanced translocation (she did not know about her translocation till the baby was born with special needs) and needless to say, her life and world have been turned upside down since then. I got goosebumps reading the article. Here is it for those that are interested:

http://www.cgmh.org.tw/eng2002/mag_mj/mag_mj_26_0107.htm

The purpose of this post is to bring some awareness to our reality. We talk this language EVERYDAY, and are scared out of our wits. Sometimes we think that most REs don't really know this subject that well, and we have often heard our REs admit they don't. They refer to their knowledge as something that is really the embryologist's knowledge. We have now started emailing doctors and scientists in Japan and China etc to get some more insights. 

At the end of this - I am going to demand an honorary PhD in the topic! :-)

Wait wait - there's too much going on here!!

Have you ever had one of those days where the hours are racing to get ahead of each other, and all your to-do's are racing to catch up, and then you realize there are additional to-do's that are flying in through the windows, and you need to re-prioritize your list, and get back to letting your to-do's race to catch up with the hours that are running faster and faster? Phew - yeah, having one of those!

So from yesterday - yes, I thought I'd call my old OBGYN. I called, and obviously nobody remembered me anymore (FINALLY - a medical office that doesn't know me by voice!!!). I had last been to my OBGYN in 2003 for my laparoscopy (We were paying out of pocket for fertility treatments then, and I decided to have my lap done by my OB to save some money!)

Yesterday's conversation:

Receptionist: Thank you for calling ____, this is Veronica, how may I help you

Me: Umm, My name is _______, and I wanted to request an appointment with Dr______. I'm an old patient of hers. 

Veronica: What's your name again? Can you spell it?

Me: OK ___________

Veronica: What's your date of birth?

Me:________

Veronica: OK here you are. You haven't seen Dr_____ since 2003?????

Me: That is correct

Veronica: You'd be considered a new patient, and Dr______isn't accepting new patients anymore!

Me: OK - set me up with any of the other doctors

Veronica: To see a doctor the earliest available date is in November

Me: How about a nurse practitioner?

Veronica: Let's see now - maybe I can put you in sometime in October...

Me: Nothing earlier?

Veronica: No

Me: OK, Thanks, I'll find someone else.

I mean, seriously - these OBGYNs should be FIGHTING each other to get to do my pap! Don't they know they have a chance of having their names included in history books as being one of the doctors involved in getting ME KU, and thereby solving one of today's most convoluted and complex infertility mysteries? 

I called the next place and stayed on hold till 4 PM when the office closed (so I knew they wouldn't answer anymore anyway). I gave up and thought I'd try this morning. 

Woke up this morning to the rearing head of my old Aunt F. Haven't seen HER in a while! :-)

(At least not in her AF form I haven't seen her in a while!)

So - I called my RE, who thinks this is for sure AF. I called CCRM, and guess what - yup - I'm seeing Dr Sch next week, on the 11th!! YAY!! 

DH had some frequent flyer points, and we got free tickets for both of us! And we're all set - I can't believe how quickly this fell into place! CCRM says I can get my pap done later - I don't have to have it done right now. 

Woohoo - my trains rolling too! I mean, at least to find some answers. Doing a cycle is still months away.......but, something's rolling!

The basics!

I got this packet in the mail from CCRM with the costs and details of everything. It also instructs me to "make sure I have my health and physical exam done, along with a pap smear within the last 12 months". 

My last exam was exactly 12 months ago - ok 12 months and 2 weeks now. So we've missed the 12 month mark. And now I have something to schedule and do! 

Then it struck me - Wait, I don't have an Ob GYN any more!! After years of going to RE's and their offices taking care of all my paps and physicals, I have not had the need to go to a basic OBGYN! 

Considering that I have such intricate knowledge of my reproductive system and its shortfalls, I'm finding it funny that I have no idea where to go for a basic health work up! 

Piece by piece

Any disease is best cured when it is diagnosed properly. Obviously. Whatever the ailment might be, the key is the diagnosis. 

For years we had no diagnosis. I went through all kinds of tests and checks, and everything always came back within the normal range. The points that stood out were:

• Is my uterus bicornuate? My OBGYN (who I don't trust any more - but that makes for the story on another post some other day) thought it was. The first RE I went to said I had a "mild variant of Bicornuate uterus - but no visible septum". My current RE says I have "an indentation" on the top of my uterus, but it's not bicornuate, nor is it anything that you can cut, or fix. What CCRM thinks is yet to be known.
• PCOS: No. Although my first RE put me on metformin (saying "It won't hurt, all it can do is help"). 
• Endometriosis: I have very bad cramps in my luteal phase - throughout the luteal phase, not just PMS cramps. So much so that I wake up at night cringing in pain. First RE was constantly dismissive of my pain, till I read about endometriosis and fought with him. Then I had a laparoscopy in 2003. They found "a couple of tiny spots" which were removed. So Endometriosis: No.
• Tubes: Clear. 
• Hormones: All normal. 
• Cycles: Slightly irregular - but I personally know people with completely out of whack cycles who got pregnant immediately.
• Height / weight - Normal. 
• Food habits: normal
• Stress: Gone from low to high to low to high. I mean, I wasn't stressed when we started TTC. Now I am. I had a high stress job which I quit to control SOMETHING in my life. So job related stress is out of the picture. But stresses of other kinds come and go. 
• Lining: Normal - good. 
• Karyotype: Normal 
• Additional testing : Normal - the only thing that came back was that I am "heterozygous for variant 677C>T" on my MTHFR test. (For this I've been on Folgard as well as Baby Aspirin and on Lovenox shots once I got my BFP - very aggressive for a heterozygous result, but hey, we'll do whatever it takes)
• Treatment: 6 clomid cycles, 5 IUI with injectables, 4 IVF's so far. 
• Response to medication: Appropriate - my 4 IVF responses with my age:

1. IVF 1 - Age 34: 29 eggs retrieved
2. IVF 2 - Age 36: 17 eggs retrieved
3. IVF 3 - Age 37: 14 eggs retrieved
4. IVF 4 - Age 37: 17 eggs retrieved

• Losses: 1 miscarriage (missed m/c), 1 chemical, 1 ectopic. These are recorded. Now as I think back, I think I may have had more losses. I have not so far had a natural loss that has been medically recorded. However, I have read enough about the symptoms and signs, and I can very clearly remember at least 3 times in the past having exactly the same symptoms. For sure. So maybe multiple losses? 2 of those times I called the above-mentioned OBGYN. His response "It may be strange for you, but as a Doctor I have seen several such cases. You're fine. Just take some Motrin or Advil and you'll be ok". So I'll never know if I WAS miscarrying then or what....

Let's take DH now:

• Semen Analysis: All good. Count, motility, morphology - all good.
• Karyotype: Balanced translocation  (46,XY,t(11;22)(q23.3;q11.2)

We've been doing PGD on our embryos to select balanced or normal embryos for transfer. We've noticed a 90% unbalanced rate in our case. We have, however only been checking for the particular translocation. We have decided not to check for other issues right now. 

I think it's harder when the translocation carrier is the male, because then it is just a matter of numbers. 

Meaning - lets take, say 10 eggs, and 1 million sperm. If the female had the translocation, and had a 90% unbalanced rate, then 1 egg is good (on average) and chances are, that egg will fertilize ok (given all else is well). 

If the male has the translocation, and a 90% unbalanced rate, given 1 million sperm, 900,000 are unbalanced, and 100,000 are good / balanced. Now the chances of 10 of those sperms to come from the good batch vs the bad batch? You do the math. And then these 10 have to fertilize the 10 eggs :-)

We've been reading and researching on Balanced Translocations, and it seems like a balanced translocation is not an easy issue to deal with. Firstly there is the issue of the embryo being chromosomally not proper. Then there are chances that embryos formed from a carrier of BT have a higher disposition for aneuploidy! We've not been checking that at all! Here is a publication of a small study:

http://ohsufertility.com/Papers/pgd%20balanced%20translocation.pdf

Now what? Now we're not sure. Where do we go from here? Here is what confuses us:

• One miscarriage - the test results came back normal for chromosomes of the baby. Then why did I miscarry?
• One chemical - That is chance, and 30% of the world's population has chemical pregnancies without ever being aware of it.
• One ectopic - Chance again? 

Do we have a diagnosis now? I don't know yet. I don't know what else we're going to find out still. I don't know where we're headed after this!

Welcome to wherever you are

Jon Bon Jovi first strummed and rocked his way into my heart when I was a giddy teenager many many years ago. For some reason I have always loved this guy, and therefore, his band. 

This is a recent Bon Jovi song that I love. I was thinking how the words resonate "fate" and also hope and encouragement. Maybe I am where I am in my IF journey, and I am there because that's where I am supposed to be right now. Maybe I shouldn't doubt myself and my abilities so much because "God makes no mistakes"

Here are the lyrics to "Welcome to Wherever you are" from the album "Have a Nice Day"

"Maybe we're all different
But we're still the same
We all got the blood of Eden running through our veins
I know sometimes it's hard for you to see
You're caught between just who you are and who you wanna be

If you feel alone and lost and need a friend
Remember every new beginning is some beginning's end

Welcome to wherever you are
This is your life; you made it this far
Welcome, you gotta believe
That right here, right now you're exactly where you're supposed to be
Welcome to wherever you are

When everybody's in and you're left out
And you feel you're drowning in the shadow of a doubt
Everyone's a miracle in their own way
Just listen to yourself, not what other people say

When it seems you're lost, alone and feelin' down
Remember, everybody's different; just take a look around

Welcome to wherever you are
This is your life; you made it this far
Welcome, you gotta believe
Right here, right now you're exactly where you're supposed to be
Be who you want to be, be who you are
Everyone's a hero, everyone's a star

When you wanna give up and your heart's about to break
Remember that you're perfect; God makes no mistakes

Welcome to wherever you are
This is your life, you made it this far
Welcome, you gotta believe
Right here, right now you're exactly where you're supposed to be
Welcome to wherever you are
This is your life, you made it this far
(I say welcome) Welcome to wherever you are
This is your life, you made it this far
(welcome) you gotta believe
Right here right now, Welcome"

Sometimes it's so hard to believe that there's a plan behind all this. But perhaps there is. Perhaps this was meant to be for a reason. I don't know that reason yet, and perhaps I never will. 

This weekend I've been thinking how consumed I am by our infertility. Everything - and I mean EVERYTHING in my life is about my failures and my losses and disappointments. I have been asking myself to "accept" and try and mould my life around what is, and not what could be or should be. 

I tried to think about who I was before all this hit me. Can I, in some way, bring that person back to life so she can continue down life's journey in an unaffected manner? Or have I been maimed and mutilated beyond repair? I'm not sure how one moves on, and lives a normal life. When we started TTC, we still had friends who didn't have children, or who weren't even TTC then. Now, 7 years later, there's almost nobody we know who doesn't have babies. We're at that age where all our friends are measuring their achievements and progress in baby milestones. Given that influence in our social life, how does one accept and move on? Won't we always appear as the sticking out "sore thumb" couple? 

There will either be pity and pity induced inclusions, or pity induced exclusions. Both situations are painful to us. Every time a friend talks about their baby, is it not pathetic to respond with a Simba anecdote? IF is very very isolating, and it's a struggle that hits you so deep in your person that it shakes your very core. 

IF changes you so much that it's sad. I asked DH how I am different now from when he first knew me. His one sentence answer said it all "Your eyes now search for a purpose" How did we come to this? If there is a reason behind all this, and if God is perfect and has intended us to be where we are today, why is it so hard to accept?