Monday, September 21, 2009

The FDA...

So I had a post that I wrote 2 weeks ago that I wanted to include with my posting on the FDA Final Rule... After reading it I decided that it was just too angry of a post that was meant to be informative. So I figured I would wait till after my appointment with my new RE and then see if I could revisit the post and be less angry.

Well I am not. Well I am still half angry. While the new RE is great and is willing to work with us and our situation to have my embies transferred, what I learned from her was more unsettling. Aside from her reassuring us that we had not violated any laws she also went over my chart and I learned all kinds of stuff about myself my cycles that my old RE never told me.

I am not a "new" patient, meaning that having survived 3 kinds of cancer to date and a host of other problems I have become familiar with how it feels to sit in front of a doctor and get bad news. So I was very surprised to learn from my new RE that my old RE never told me that I have two MTHFR gene mutations. Even though when my husband and I were sitting in her office to get the lab results she simply said, "The only thing we found was that you have low B12 so we are putting you on Folgard". I sensed that she was not telling me the whole truth so I probed her further... "I said that is it? That is all you found"? and she relied with a curt and short "Yes". I said "Okay well this sure was a big production just to tell me that I had low B12, I don't understand why I needed to take time off work to come to this appointment". She just shrugged and said that she would talk to my nurse and let her know that in the future they will give me my lab results over the phone. That was it, she got up and left us sitting in her office without even a goodbye. I was not quiet sure if we were done till a minute or two later the nurse came in and said we could go and that there was no need to go to check out. The END. Done.

So what I learned from my new RE is that my old RE really meant nothing personal by giving us a hard time with our donor. My old RE really just never gave a damn about me or my life or if I ever got pregnant. This concerns me because, it would indicate that my RE never intended to help me get pregnant from the moment I walked in the door and for that I am once again sad and in mourning. I am mourning the loss of 3 years and 3 IVF cycles with someone I thought would help me only to learn they never had my best interest at heart. I was just a price tag to them, dollar signs that floated in her eyes when she looked at me. Maybe I meant a new purse or a new custom pair of specially made orthopedic shoes to her. Whatever the case for three years when I sat before her she never saw me, not once not as a person or a human being anyway. So I spent the weekend mourning the loss of trust that I had for a doctor. I know that there are lots of people that have bad experiences with a doctor but this is my first and I have been to almost every specialist there is.

However, while I mourned the one loss I celebrated many gains. I gained new knowledge of my self and I gained a new trust for a new RE who spent hours reading and studying my chart before she saw me so that she could discuss everything little detail with me on my first visit. I was impressed with how she knew so much of what we had been through already. From the moment that I sat in her office to meet with her, I noticed one thing that I never felt before with my old RE. I felt a sense a peace. I felt comfortable sitting across from her talking to her something that I never felt with my old RE. Whenever I would sit in my old RE's office I always felt so small and diminutive and nervous, even if she was not in the office I felt this way. The first time I sat in her office I thought to myself I want another doctor but I said you have to meet her before you think that silly, so I squashed the feeling. So I tell you to trust your feelings, your gut reactions, because often those are cues telling us that something is not right for us.

With that if your gut is telling you to use a directed donor, then do what your heart tells you is right. Here at last is the link to the FDA's website on the final rule. I hope it helps you to find your own bit of peace.


Monday, August 31, 2009

The Village

Okay so I have been reflecting back on my experience of using a directed donor and I think that since the worst of the storm has blow over I would like to pass on some nuggets of knowledge that we gleaned from our experience so far.

While I know that everyone will have a journey that is unique to their situation, I just want to share some nuggets that resonated with "us". Some are just a reflection on the experience so far others are more technical. I will be breaking the blogs up so they are easier to digest.

Today I want to focus on "The Village" or more importantly our experience with being open with our family and friends about our journey.

When my husband and I first started our infertility treatment "we/us" meant he and I. At the time "we/us" thought that our infertility would be resolved by "we/us". Meaning hubby and I mostly with the assistance of our doctors.

However when we started investigating the idea of using a directed donor a year ago we realized that terms were going to take on new meanings. For Hubby and I, we really wanted to have the support of our friends and family on this. For those of you who just started following the blog if you read the older post you will see why we wanted to take an "open" approach with using a directed donor. Since we already had the support of our friends and family on our current infertility course, we thought the best approach was to sit down and talk to our family and friends and let them know where we wanted to go with our family building journey. We felt that they needed to know why we were changing course and why we needed their help.

Doing this obviously has it's good parts and bad parts. Sometimes you get feed back from you family and friends that is hard to hear and that maybe you don't want to hear. However sometimes you have to take the things you don't want to hear and factor them in because they are relevant. For the most part there was very little negative feedback on the "new plan" but there were a lot of questions about the IVF process.

The hardest part of all this was that our infertility, which before was pretty much between hubby, myself and the doctors now become a matter that we had to discuss openly with well... everyone! Suddenly our infertility was no longer just "we/us" but now included "him" and "them" as well. Meaning the addition of our donor (which "we" all agree "we" hate referring to him as so "we" prefer to say "baby daddy" when we can't use his name), as well as our donors family and then all of our family and friends.

I stepped back one day and realized that "we" now had behind us a village. A village that was very eager to wage the battle on our infertility. Sometimes the village was more eager then the process would allow. So when I say "we/us" please mentally include "the village" as they are all aware of the play by play on our infertility. Down (or all the way up) to my Grams (Grandma). Yes even my Grams will be happy to tell you that "we" have 7 embryos and she is praying for every single one. :) Don't underestimate the young and elderly, their ability to understand will surprise you.

Needless to say our open approach has been filled with so much love that I would not trade it for the world. I know that not everyone can be as open with their journey because I know that not everyone will have as open of a family. However if you have a chance to take an open approach I can say it can be a blessing. I have been very happy overall with the level of support I get from "the village". It means that hubby and I don't have to carry the burden of our infertility alone. It also means that any children we may have will be born into a village where every member will be happy for their arrival. Suddenly the proverb "It takes a village to raise a child" has some real meaning to me. It also means that when you get a phone call from "Aunt Sally" and she asks how your embryos are doing you don't have to worry about being shocked that someone in your family "blabbed" your business. It also means you are less likely to get the "so are you pregnant yet question"? which for a woman who has been trying to have a baby for 7 years can tell you that that question will never lose it's sting.

Well I think that is enough to absorb for today. I hope you have found this blog helpful in some way.


Tuesday, August 25, 2009


I have been absent of late. Kind of lurking because my male factor infertility tale has had a few twist and turns that I have not been able to share with anyone because I keep being told that I should be a good girl and keep my mouth shut. What I can say about our journey is that even infertility doctors can be quite hard to reach where male factor infertility is concerned.

It is a hard taste of reality when after treating my husband for 7 years for his "issues" we decide that enough was enough. We decided as a couple to use a directed sperm donor (aka someone we know not from a bank. We were met with opposition from our doctors on our choice. Not that they did not want us to use donor sperm, they had been suggesting it from the beginning, but they frowned on us for using a known donor.

They frowned so hard on our choice that they went so far as to make us believe in and comply to "Laws" that were in fact not laws at all but ended up being "rules" set by the practice made to "protect us".

I am not sure why they were so unnerved by our decision but they were. They even felt that not giving us the ability to make an informed patient decision was "better for us" and so they tried and tried to make us do it their way.

I guess they figured that a father will be less of a father if he has to look at his children on a regular basis, that all men in thier maleness will be so shallow as to think to himself everyday "this is "his" kid not mine". I wonder if Joseph ever thought that way about Jesus because he turned out to be a pretty okay guy or so I am told. I wonder if my Step-Father knows about this rule for men becasue he loves and treats me the same as he does his own "DNA" and has never made me feel unwanted becasue I am not "his DNA"

I guess they figured that after surviving 2 kidney transplants and a host of other complications from those experiences, that my husband still did not posses the ability to know when to listen to his body and his soul and know when it was time to throw in the flag and say enough is enough.

I guess that it was not enough for them that I had battled cancer 2 times and have endured 7 years of waiting and had survived 2 rounds of failed IVF for me to know when to say enough was enough. I guess in the end it was also not enough for them that it was my body and my eggs and that ultimately the choice begins and ends with me as to whose sperm I would allow to fertilize MY eggs and whose child I would be willing to carry in my womb.

Some how they gave the power to the sperm and not the patient who was waiting on the table with her heart and legs spread wide with hope. I was made to feel that I was being given a gift and I could only receive the gift of sperm that they felt had "no stings attached" and so they wanted to strip away the bows and the ribbons before I was given the gift of motherhood that could only come to me from the "right" manhood.

No it was not enough because they tried so hard to shove a square peg into a round a hole. They tried and tried to say that the choice was not mine at all that there were "strict laws governing these things".

It was almost enough. We almost believed them. Well we did to a point and we followed all the rules they wanted us to follow. But In the end we did not listen to them, we chose to listen to our hearts, our souls and our bodies and we chose our own path. We chose a path that says DNA is not what will make our family, love is what will make our family. Funny thing, in the end there were no laws broken by us, not a single one, but I am not so sure that the doctors did not break more then a few in their attempts to stop us.

They seem to not listen to our words or respect our wishes, well I bet that now that our credit card is no longer speaking to them they will understand better. :)

I hope this finds you all well. Hugs and blessing be to you.

Mel if you read this, once again thanks. You helped the tears and anger to be shed that needed to be shed in way that did not hurt anyone and helped me. In the end it is all about me sometimes and this was one of those times.


Wednesday, June 10, 2009

Stirrup Queens Stirs Up My Noodle...

Hello All,

Mel's post "Infertility is to Dating as Analogies are to Whatever Works in this Space" has prompted me to discuss some things.

I have only attended a couple of RESOLVE meetings and I have always felt kind of self conscious when I go because I have for a while now resolved my issues with infertility without resolving my childlessness. So I find myself sometimes wondering why am I here? Sometimes I feel that I lack the appropriate emotional response for someone in my situation because I don't fall apart over my infertility anymore. I am not saying that I never have, I just resolved the infertility when I made the appointment to see the RE. So by the time I walked in to the RE office I had already let the emotion of loss leave me. For me I could not have resolved infertility after seeing an RE because much of me was in a state of denial and visiting the RE would be admitting defeat right? Well at least that is how I saw it. So by the time I started my cycles I was kind of over the feelings of loss.

While I feel out of place sometimes when I am around my fellow "Unfertile Myrtles", I also feel a strong sense of belonging. I know that just because I resolved my issues with infertility does not mean that I have resolved my issues of feeling alone. However much my Hubby helps me to feel less alone along the way, there are still times when I need to know that he and I are not the only couple out there on this journey. Besides there is something to be said about sitting down with other women discussing our calendars so we can map around our cycles much like other women sit around and discuss their calendars to map around play dates. RESOLVE has given me a sense of belonging that I did not have before I attended the meetings and for that I keep going. Ah so great to not feel so alone on this journey!

I have had people ask me how I manage to be so at peace with the process of IVF and how I manage to hold it together while dealing with all the medical crap. All I can say is I don't know I just do. I know part of it comes from the coping skills that I had learned when I was dealing with cancer. A bigger part of it is, it is just who I am!

I have always been the type of person that can face uncertainty and not get scared. I think for many people the uncertainty of their situations is what keeps them in state of morning their infertility. For me uncertainty has always been a constant in my life so instead of holding back I push forward and hope that there is something there to catch me, but if not, I am very prepared for the abrupt stop at the end.

I also think for a lot of people they feel that accepting their infertility would be to accept defeat. I however have looked at all the options and I realize that motherhood just may not be in my cards, and I am okay with that. I can see a life in both directions with kids and without. While I want the one with kids, I understand that what I want, may not be what I get. Just because I can see and am okay with all the options, does not mean that I am going to stop trying to make a future WITH KIDS. I will try every door till I have tired them all thrice and if I find that I have tried every door and none hold the future that I want, then and only then, will I concede defeat. When I concede defeat and raise my white flag, I will do so with the knowledge that I tried everything in my power, on this journey of uncertainty, to change the outcome. If I fail it will not be because I did not try and for me knowing that if I ever face the end of this journey childless, I will accept it and I will be proud because I tried my hardest. For now the journey has just begun and I have not reached that end yet and even if this life does not end the way that I want it to, well, there is always the next lifetime.

Donor Update
My donor gets in today! YAY! I am excited yes because this marks the beginning of a new path along the journey but above all, I have missed my friend. My poor friend has faced a lot this past year from self-realization and guilt to a new marriage that ended quickly in divorce that only lead to more guilt and more self-realization. However, I see him growing happier by the day and that gives me great peace. I am grateful that despite all that he has faced that he is still adamant in helping us with what he can on our journey to building a family. Even if this does not work, I will forever be grateful for the day that I was graced with the pleasure of meeting such a selfless, caring and loving individual and I will always be thankful that we are friends and I am thankful that along the way we have became family through all of this.

I hope this finds you all with peace in your hearts.


Friday, June 5, 2009


Life is good to me right now and I am just feeling really blessed at the moment.

It comes down to the support that I am getting from all around me. My family, My husbands family, and my donor's family plus my web family and Resolve. So all in all I just feel really blessed that I have had so much support. Considering the path we have chosen, I know that there could have been a lot more negative reactions, but there just has not been. I know what a blessing that is. I have heard some terrible stories from people who's family did not support the idea of IVF let alone the use of donor anything. So far everyone seems to be really ok with this. Even my donors family is excited for us and were happy that we had asked their son to be our donor. They are looking forward to having a stronger relationship with our family and for that I am glad because I want my child to know and have a relationship with their biological family, if that is what everyone chooses. I understand for some DI kids it is not an important thing to have a relationship with their donor's families yet for others they long to know that part of themselves better. Once again I feel so very, very, blessed that it seems we will be able to provide answers for those hard questions when and if they ever become an issue.

My Donor's parents have requested that we ALL write a journal about our journey addressed to our future child telling them why we chose the path that we did in bringing them into the world. That way when our child is old enough we have a record of our thoughts and feelings. If they ever question whether or not love was involved in their creation, we can show them everything we wrote before, during and after their presence into the world and hopefully this will dispel any doubts for them. I want them to know that indeed, much love and much thought went into their creation. I almost told my donor's parents about this blog but I decided to wait for a less emotional time to tell them. I will see them again in July so I will let them know then that I have honored their request. So over the next few weeks I am going to write in this blog detailing why I have chosen this path. I will be pouring my heart out here to my future child in case I am ever blessed enough to bring one into the world. So if you don't want to read during those times I understand.

On a slightly different note;

I had my appointment yesterday with my RE and we decided that we would not do the lap at this time. I have never had symptoms of endo and there are less then 20% of women who have endo that have no symptoms. So we are going to assume that I do not have endo. However, we are going to do a scratch test and biopsy of the lining of my uterus. My RE believes that the things that they do with the scratch test can tell us if we should look deeper or not. The scratch test also serves as a double whammy because we can test for some of the other things that would be treated by Dr. Toth. So scratch test it is because it serves a dual purpose.

Also, my RE did not laugh at me when I brought up Dr. Toth and it seems that she along with others in the practice have worked closely with him and have developed a cross system of determining who should see him. Many times my RE can treat me here using some of his methods without having to send me to New York. Only the really sever cases are sent to Dr. Toth. So that is good news. At the same time I feel that this is a proactive enough approach without being an infertility hypochondriac.

Well thanks for tuning in!


Friday, May 29, 2009

I'm Back...

Hey Guys,

With a huge sigh of relief, I am back form California and an happy to report that everything went very well.

Meeting my Donors parents was actually a very welcome treat and I was worrying over nothing. I will not lie it was still a very emotional ordeal and try as I did, I still ended up crying in front of them. But it was okay because this journey has been filled with lots of emotion and lots of tears, that not all of which have been shed out of sadness. For me to deny my tears would be unfair to everyone who has an emotional stake in this journey. Any way all I can say about it is, "Waterproof mascara rocks". Once again the title of this blog seems to fit and I am reminded why I chose it because, "LIFE is not a guided tour" and creating life has not come with an instruction manual or a map that says X marks the spot.

So the next step in the journey is to actually do the IVF right? Wrong... Ah Drats!

But alas... Since a year has passed since my last cycle, I get to do all the testing over again. Anyone want to do my sonohysterogram for me? For those of you that follow but don't know the infertility lingo, I will explain since I know this is all Greek to you guys. Think of a woman's uterus as an empty balloon. With a sonohysterogram they fill the uterus with saline, kind of like filling a balloon with water, this pulls the uterine walls apart so they can better see if there are any abnormalities in the uterus with an ultrasound. This test will usually show 90% of abnormalities. I know that my friends with endometriosis will like to disagree with that statistic because endo can be hard to see on an ultrasound.

Anyway, since I have no symptoms of endometriosis and never have let us assume that it is not there but... I think I am going to request that they take a look for it anyway since my insurance covers it and I want to improve my chances of this working as much as possible. So I am going to sign up for the laparoscopy. I can handle the laparoscopy because for that procedure you are knocked out. Again for those that are new to infertility I shall explain. A laparoscopy is where they make a small incision near your belly button and insert a camera into your abdominal wall. This allows the doctor to see if there is any endometrium (the lining that forms inside the uterus where a baby would attach) growing outside the uterus in places where it should not such as on the fallopian tubes or the ovaries or even the intestines etc. etc. etc. The laparoscopy is a great thing because if the doctor finds any endometrium where it should not be, they can surgically remove it at the same time and this can improve your pregnancy rates but can also improve the outcome of your stimulation cycle because if there is any endometriosis on your ovaries it could be interfering with your egg quality and quantity. Removing endometriosis before an IVF stimulation cycle (where you inject hormones to produce lots of eggs so the doctor can retrieve them) can improve the number and quality of the eggs that are produced. The better the quality and number the better your chances of achieving pregnancy. So I have contacted my doctor and have thrown out the suggestion that since last time was such an epic failure, that maybe before we move forward with our very very expensive compassionate donor sperm that we should really rule out that there is nothing "wrong" with me.

So I will keep all posted on that because if we do the laparoscopy and they find some endo, I am thinking about seeing a very controversial doctor in New York for a very controversial treatment. However controversial it may seem, most insurances cover it and him. Even if they don't find any endo I am thinking that I may see him any way. I will simply provide you with the doctors name and you can research his treatments on your own. Because of his success rates following his therapy, my very well respected IVF clinic has been working with him and he also comes highly recommended by many in the RESOLVE community (national infertility support group). Any way his name is Dr. Toth and he performs a controversial antibiotic therapy where antibiotics are placed directly into the uterus to kill off any harmful bacteria that it may he housing and that may be making it difficult to get pregnant. Again controversial therapy and doctor but insurance usually covers him and the treatment and he come highly recommended. Besides I have never been to New York so at minimum it will knock another state off of my 50 States Goal. (basically I want to visit each of the 50 states at least once in my life). At best Dr. Toth will be another person we can thank after we get pregnant.

I had day 3 labs done last month along with TSH and T4 just to check that my hormone levels were still looking "normal". They do, but since I have no thyroid and it has taken nearly a year for us to get my thyroid levels normal and they kind of went a little wacky during my last FET (Frozen Embryo Transfer), we will be checking my day 3 labs monthly till I start my stimulation, then we will be checking all my levels every other day.

Despite all of this medical crap in front of me. For the first time I have this strange sense of calm about the whole thing. My last few simulations and suppression had me a little nerve wracked at the prospect. I don't know if it is because I am getting used to the process or what, but I feel so much more at ease about that whole thing. I have had no headaches or panic attacks as the time approaches. Maybe it is because blogging is helping me to cope with it all. I hope that this is a good sign.

My love and gratitude to my readers, I know that there are not many of you but your support is huge to me.

Alas, I have few pictures of California. I have a few of me hanging out with my Mom and brother but I have few of the Capoeira event as photography was not allowed. Once I have thing in more order, I will post what photos I do have.

Dora please, if you do not mind, please share with us all what you know about the FDA waiver. While I know the guidelines are set up to protect us, they can be a little annoying. So I would like to know more and there maybe others out there that would like to know as well.


Tuesday, May 12, 2009


Okay well I am starting to get nervous now. I leave for Cali in 3 days and while it seems like it will be a nice vacation I am nervous. I guess the plan is that I will meet my donors parents. I know that they support my donors decision to help DH and I to have a baby, but I can't help but feel nervous. I was supposed to do this with DH by my side but his work is in an unstable place so he decided to forgo the trip. So I will be going to the meeting alone with my donor.

I guess what I am afraid of is the personal questions that I am sure are going to come up. I just don't want to cry or appear weak in front of them. But I know that there are just some parts of my journey that are too hard for me to retell without some tears. So I am spending my energy on packing and trying to think about all the other things I will be doing in Cali too.

Funny how I can manage to talk to Senators and news crews about IVF without losing it but I have this fear of losing it in front of my donors parents... WTF with that? I never posted it because I was pretty busy for a while fighting Georgia SB 169. It was a horrible bill that was targeting IVF and stem cell research. In the end we managed to fight out 99% of the IVF language but sadly, even though the bill had little support form the people, the bill passed the Senate. It has since died in the House... but still not a pretty blot to have on Georgia's record.

Sooooo can you keep a secret? I am surprising my Mum! :) She knows that I am going out to Cali but she does not know that I am going out early to surprise her with a late Mother's Days. Then as part of her surprise I plan to take some pictures with my brother so we can put them in a frame for her. I think it should be good I just need to meet my dad some place so he can take our picture and I have to figure out where that is. I am thinking the beach for some and another location for the others. But who knows what I will come up with...

Well now that I can tell my mom about this blog I will be posting more. Plus I will post more pictures while I am on vacation. :) Always easier to get online when you don't have work to get in the way. :)

Plus I am getting excited about the Capoeira event that I will be attending. Capoeira is a Brazilian Martial art that is practiced all over the world. I started last October and I love it. the group Mandinga in San Diego CA. is having their event over Memorial Day weekend. If you are in the area please try to check it out.