Egg Retrieval Update

After 11 straight days of shots- mostly 3-4 A DAY, we finally had our egg retrieval on July 5! Although it felt so high stakes because our last retrieval went so poorly, I was SO calm about the actual retrieval part the entire time. I just knew it was all completely out of our hands. Besides making sure the amount of meds were correct there was nothing else we could do to ensure that we got any eggs.

But the process itself is always VERY stressful. There are days when you have to rearrange your plans and work schedule last minute to make sure you can make it to appointments on time. The fact that Mackenzie just started camp didn't help. Usually we can drop her off at school at 7 but camp didn't start until 8 so that just made everything else more complicated. Thank God I have such an understanding boss! And then add on top of the every other day ultrasounds and blood work the daily shots. There were 2 shots starting on June 24th and then I added in a shot on the 27th. Once any follicle reaches 14mm you start the morning shot so that you don't ovulate. The 2 shots at night were sometimes 3 shots because of the dose of the one shot. It came in a vial of 300 iu but my dose was 225 iu. So the first vial I just did one injection but the next day I would have to use the rest of the first vial (one shot) and then reset another vial and do a second shot. Plus the other medication. And then wake up in the morning to other other injection. It is A LOT. So thankful that my husband give me the injections. I cannot do the injections myself!



We took the trigger shot on July 3. You have to inject it exactly 36 hours before egg retrieval. It has a MUCH larger needle and goes into the muscle, not the stomach like the others.

Our egg retrieval was on July 5. It was a good day to have it because there was NO traffic going to Rockville or coming back. It was a smooth process. They check you in, get your vitals, you meet with the anesthesiologist who starts your iv, and then the doctor who is performing the retrieval. Then when its time you go back you walk back to the OR and talk to the embryologist and you get strapped into this awful table with stirrups (I mean literally strapped in) and you fall asleep. When you wake up you're back in your room. 

I wore my "This is my lucky shirt" tshirt and my "I am lucky" socks to the retrieval!

The good news is- we got EIGHT eggs! My doctor called later that night and said 7 were mature which is AMAZING!! We are so excited with that result! 

We are doing ICSI and assisted hatching to try to get better results and the assisted hatching also because we are going to genetically test our embryos.



Our tradition of going to Krispy Kreme after visiting the Rockville office continues! At least this time we were happy eating the donuts!

July 6th- my nurse called and said that of our 7 mature eggs, 6 had become embryos! I was so excited! I feel so emotional about these little tiny babies! 

July 7th my nurse called to say that our 6 embryos were still growing! I was completely shocked by this news! But very excited! She said they wouldn't check on them on days 3 and 4 so she would call Monday.

July 10 my nurse called to say we had 4 day 5 embryos. This was SUCH great news!

Today my nurse called to say that our 4 embryos had been biopsied and frozen! We have FOUR frozen embryos! Honestly- I was really hoping they'd get 3 eggs. That was the big number for me. Obviously we hoped for much more but at the end of the day it takes ONE egg to make a baby. But I just thought if we could have 3 plus our other egg that was frozen maybe we would have 1 or 2 embryos make it to freeze. We have FOUR!! And they are going to thaw our original egg this week and go through the process to make it an embryo so we will see how that goes!

Now a sample of our embryos is being sent to the lab to have PGD testing done. We all ready know from our previous genetic tests that George and I are not carriers for the same diseases. That's great news! However embryos can have a number of abnormalities that would make a pregnancy unsuccessful and that is what we are looking for. We are not looking to do this testing to pick a certain sex. We really just want the best possible chance at a successful pregnancy we would get.

We are really excited that we have 4 little embryos sitting on ice waiting to become babies. After so many ups and downs over the past 5 years this is just such incredible news. I cannot believe we have FOUR embryos!

On another note. Now that I have once again sat in the fertility doctor waiting room for 2 weeks I am overwhelmed with sadness and compassion for the families that have to go through all of this for years. I cannot imagine women having to do all of these injections and medications and appointments month after month after month after month. 2 weeks was exhausting enough for me. And we didn't have add into it trying to get pregnant. Plus we weren't keeping anything a secret. I just can't imagine month after month of trying to get pregnant and not really having support because you "aren't supposed to tell anyone you're trying to get pregnant". There is such a sadness and loneliness you feel when you are going through this. Even if people know. I was getting so depressed having to take the shots everyday and go to the doctor and more blood drawn. Its exhausting. And that doesn't even mention the financial burden that comes with fertility treatments. The fact that my insurance "excludes" fertility treatment from being covered is absurd. Sure having a child isn't a right in life but having coverage to a medical problem should be. This shouldn't be a womens issue. This is a family issue. 1 in 8 couples are effected by infertility. That includes men.

Advocacy Day

Yesterday George and I went to Capitol Hill to participate in Resolve's Advocacy Day. I debated about attending for weeks- maybe months. But then the House of Representatives passed that awful healthcare bill and I decided that I would do anything I could to help. 

I felt a little weird about going. I still don't really consider myself infertile. I had cancer and I can no longer even try to get pregnant. But I probably am infertile from chemo. I just don't know for sure. But these issues are important for every woman. Every person in this country knows someone who is infertile. You might not know you know someone- but you definitely do. 1 in 8 couples is affected by infertility. Not just women- men too. And no one talks about it. Because we think we aren't supposed to. But it is SO helpful to so many couples if you share your story. It is the worst feeling to think that you are alone. 

We didn't really know what we were in for with Advocacy Day since it was our first time attending. When we got to the hotel for some training they had breakfast for us and we got started with all the information we needed to know. I knew a little bit- they have SO much information on their website including a training that they recorded that I watched earlier this week. 

We were there to talk about 3 main issues- IVF for Vets, Adoption Tax Credit Refundability and personhood bills. 

IVF for Vets was passed last year but only for 2 years. It expires in 2018. Active duty military have access to IVF through their healthcare which is great. But vets who are wounded causing problems with their reproductive systems (both men and women) did not have coverage. Can you imagine fighting for our country, getting wounded and then having no coverage when you wanted to start a family. The bill that is on the table in the House and Senate would make the IVF for Vets permanent. 

The Adoption Tax Credit Refundability would change the current tax law so that even if you don't owe taxes you would still get the tax credit back. Right now you can get up to $13,000 back as a credit but only if you owe. This is especially unhelpful to most families who adopt as they are usually middle to low income households who might not owe taxes. There are 4,700 children in foster care in Virginia. It would save our state $67,000 to $127,000 for each child that is adopted out of the foster care system. Not only would this bill be helpful to families but it makes sense for states too. 

The last part was personhood bills. Currently there are a couple in the House and the Senate. We are opposed to personhood bills. Personhood bills give rights to basically a zygote. HR 586 seeks to define that "the life of each human being begins with fertilization" and a "one-celled embryo" is "a new unique human being". This would be detrimental to couples who have to use IVF to have a child. This bill would make a law that says a women has to have ALL embryos transferred to her- there's no freezing or discarding them. Some women have 10 or more embryos. How can this be safe for her or the embryos they say they are trying to protect? While I understand part of the intent of these laws are anti-abortion they are far from being pro-family. They are certainly not pro-life and they are not pro-woman. Similar bills that have passed at the state level were used to prosecute women for having abortions. These bills would guarantee that we would not be able to have any more biological children. That is not very "pro-life" or "pro-family" to me. 

We got our schedule for the day

We listened to many speakers including Barbara Collura- President/CEO of Resolve

And Representative Timothy Walz from MN

After we listened to speakers we met with our state delegations. Virginia has a very large group and met with each other and we talked about who was going to say what in each meeting. We got to see who would be coming to our Representative meetings from the larger groups. Then because we had a 10:30 meeting we left the training a little early to walk over to the Capitol. 

So I knew the Capitol was large but WOW! I forgot about all of the other buildings attached. Thank God for the underground tunnels as it was around 90 yesterday! 

First stop was the Russell Senate Office Building to see Tim Kaine. 

The Russell Building is GORGEOUS! Exactly what you think when you think of the Capitol. We had some time before our first meeting so we waited and took in the architecture. 

This is where the media films members of Congress for their shows. We saw a couple giving interviews- although I didn't know who they were. 

Still waiting! 

George and I in front of Tim Kaine's office. 

This is our whole Virginia delegation! So big that we barely fit into Tim Kaine's conference room. Unfortunately we did not get to meet with the Senator but we met with his staffer. She was so knowledgeable and listened to our message. 

Next up was Mark Warner. We used the underground tunnels to get to the Hart Senate Building. I just want to say that umm it was A LOT different that the Russell Building. It looked like an old hotel. It was so interesting to see how different those 2 buildings are! Fun fact- I actually have met Mark Warner before when I was in SGA for 1 year in college. We took a trip to Richmond and we all got to meet him and take pictures with him when he was Governor of Virginia.

There was so many of us we couldn't even fit in Mark Warner's office so we met in the hallway. We were told in our training that we might have to meet in the hallways with some Senators or Representatives and that we would probably only meet with their staff. Obviously the men and women in congress are very busy! But their staffers are each focused on different issues such as veterans affairs, taxes, etc so it was helpful to meet with them. 

After our meeting with Mark Warner's staff we went to lunch. We didn't all stick together, some left the Capitol building and some of us ate in the cafeteria. It was nice to get to sit down and get a break from all of the walking and to get to know some of the advocates from our state a little better.

After lunch we went to the House of Representatives. Before our 2:00 pm meeting with Don Beyer we passed out letters to other Representatives who didn't have constituents there on Advocacy Day. We stopped at 2 offices but neither had staff available to meet with us so we left our information and letters for them.

One thing I was really looking forward to was riding the tram! Because I thought it took you all the way to all of the buildings- I thought it would have different stops. It doesn't. But it was nice to cut out some of the walking and it was still fun to ride!

After we dropped off the constituents letters we went to Don Beyer's office who is our Representative in the House. I was excited because I heard that we were actually going to meet with him (and we did!). It was funny because there was just 4 of us there really early for our meeting so we waited in the hallway when we saw Don Beyer walking towards us. He said hello to us and we told him we would be in soon! 

This is our group for Don Beyer. Obviously geography helps for our group to be so big but I think its important for our Congressmen and women to see the people who are facing the issues they are representing us on. We all crowded into his office- his staff was so accommodating of us. He saw on his desk and listened to all of our issues. It was nice to talk to him personally. I wish I could have asked him more questions but we stuck to the issues! 

George and I with our Rep. Don Beyer. He is such a kind man. It was helpful to talk to 3 democrats about the issues we wanted to discuss because they all were very supportive. 

After our meetings there was a reception with some snacks and drinks. We filled out our form about the day and then I pretended like I was in a House of Representatives committee. I think I fit right in! 

We cut out of the reception a little early to make our way back to Arlington- but not before a selfie with the Capitol. 

Gorgeous inside and out!

I don't know how accurate this is because its from George's iPhone but I think it was pretty close. If you are going to a day at the Capitol be prepared for a lot of stairs and steps! 

One think we were totally unprepared for was the dogs we say in the House! We were walking down one hallway, I looked down an adjacent hall and saw a girl throwing a ball to her dog. Like the size of Bailey! And then after our Don Beyer meeting we saw a man walking down the hall with his black lab puppy. I took a picture of him but sadly he was too wiggly and it didn't come out. His owner said that if the Rep you work for allows it then its okay- usually during recesses. The staffers do a lot of hard work for most of the year so I think its so cool they get to bring their dogs in when they have a little break! 

Overall I think Advocacy Day was a huge success. I am really glad we went. I hate that it takes something personally affecting you or someone close to you before you really start paying attention but we are here now and ready to continue fighting for this. I think people either forget or don't know that infertility is a medically diagnosed disease. It makes no sense that most insurances do not cover it.

I want to end this by saying a HUGE thank you to my husband George. He didn't really know what he was signing up for (oops!) but I told him it was important to me, and us, and he took the day off and went with me. I've heard awful stories of husbands and wives who don't make it through cancer diagnosis or infertility. Not only has he always shown unwavering support of me and our family but he does it without complaint or asking "why me/us". He has been my rock, my cheerleader, my shoulder to cry on for the last 11 years. We never ever thought we would have to go anything like this, let alone so young and so early in our marriage but I think we have been even stronger together. There are times when I don't think I can go through this surrogacy stuff anymore but he continues to help me search for the light at the end of the tunnel. I could not have ever found a better partner for me through all of this or life in general. Again, thank you so much George- I love you forever and ever. 

Denied

We have been talking with a potential surrogate for the last 3 weeks or so. I found her on one of my Facebook match board we had both recently joined. She was a great match for us and I have talked to her almost everyday since we "met". It's been cautiously exciting. We have only told 2 people about her- my mom and my sister-in-law Claire because I thought maybe this time if I didn't tell anyone it would work out.

We went through the beginning chats about our beliefs and I sent her my blog and we agreed to everything. It was all very easy. At first I was a little nervous because everything with the scammer that tried to match with us a couple of months ago was easy too- well more like she was just 100% agreeable but after talking with this potential surrogate everyday I realized shes just a really nice person. We finally decided that it was time to see if she would be cleared by my doctor and move along. 

She lives in a different state which I was concerned about at first but it is within driving distance (8 hours) so I felt better about that. Plus my doctors office said she would only have to come up here twice which I felt a lot better about because that saves a lot of money!

Yesterday she had a phone appointment with my fertility doctors office and that seemed to go well. They said they had to review the paperwork and they would get back to us. But they also scheduled her a phone appointment with my doctor so we were both excited about that.

I do have to say that although we try really hard not to be, its hard for George and I to not get excited. To think about when the transfer would be and then what the due date would be, when we would be able to tell Mackenzie, and all of the stuff that goes along with a pregnancy. It has been fun imagining all the scenarios and thinking of fun things like a transfer present and birth present for our potential surrogate.

Tonight my doctor called personally to tell me that he was medically denying her. It's not because of anything she did- in fact it was very much out of her control but she was denied nonetheless.

I was sitting on the basement stairs while I talked to my doctor and Mackenzie was watching tv in the living room. I was totally calm while talking to my doctor and actually really, really appreciated that he called personally to explain everything to me. When I got off the phone I just sat silently on the steps and cried, being very careful not to be heard. I couldn't imagine what I could have told Mackenzie in that moment.

I'm at a point now of anger and disappointment that I'm not sure how to get out of. Part of me just wants to give up. Actually most of me wants to give up- we have no more options and I'm tired of this roller coaster. I really wish we knew someone who lived near us who was willing to be our surrogate but after a year of asking it is becoming clear that we will have to use a stranger. And then go through all of this again- hope they aren't a crazy person just in it for money, hope they don't want a ton of money, hope they have insurance that covers their surrogate pregnancy, hope that my doctor clears them, hope we all get psychologically cleared, hope that we agree to a contract, hope that the transfer takes and then hope a healthy baby is born.

I'm ready to take a break I think. Although I hate to say that because I feel like it means we aren't going to keep looking. I just can't keep actively looking all the time. It is stressful to watch for how many likes, views or shares my surrogacy posts get. I think about the quote below often and I keep putting our need for a surrogate out into the universe and talk about it with people even though it might make us both uncomfortable but if I don't tell everyone about it how can we expect to find a surrogate?

I've said this before but it bears repeating- this is the worst thing we have ever been through. And I'm not trying to be dramatic about it. It is 100% worse then going through cancer treatments. At least then I had an end in sight. This is going on forever. In about 3 weeks it will be an entire year of looking for a surrogate and I just never imagined we wouldn't have a baby on the way by now. I wish we were stressing about finding space for baby things and paying for daycare but we aren't. I would love to be sleep deprived, listening to arguing children and changing diapers but we aren't.

Please continue to keep us in your thoughts as we struggle through this incredibly difficult time in our lives. The ironic part of it all is that George and I feel like we are actually better than ever in our relationship because of all of this which is great. I can't imagine going through all of this with anyone else by my side.

Still

I debated even writing a blog because nothing's new. My incision is still open, we still don't have a surrogate. Everything is still.

Honestly we are very discouraged. We were spoiled by getting 2 volunteers back to back. And now it's been 6 months since a serious candidate has come along. We have debated recently about giving ourselves a deadline to end our search and just move on. It is emotionally all consuming 24/7. We had someone for example from my online surrogacy group message me (that's exciting) but they've given birth 5 times (that's disappointing) and it never seems to stop. Last month was probably the hardest month so far for me personally and I'm just not sure how much more I can take. 

Ultimately I'm not sure if we could come up with a deadline. I'm afraid to give up and I'm afraid sometimes to keep going. I'm afraid to stop talking about it and begging for help. I used to fall asleep every night thinking about this baby- what month he or she would be born, would we find out their sex, what would Mackenzies reaction be, ect. And now I don't. Sometimes I read a name we picked out and it stops me for a second and then I move on. It makes me sad but I know it's my brain protecting my heart. 

We talked about adoption again but I just don't think it's for us. And it probably sounds weird that we would choose at this point to not have a child rather then give a child a home but that's our choice and we don't have to rationalize it to anyone. 

Tomorrow marks 6 years since our 5 week old 5 pound baby has surgery for pyloric stenosis. I remember at the time being relieved when she went back for surgery because I knew it was going to finally make her better. And at the time I thought how hard that situation was on us- our preemie who shouldn't have even been born yet having surgery so little. Never in a million years could I imagine that just 2.5 short years later we would be going through something so much more dire. It's amazing how that experience with Mackenzie is the reason my cancer was found. If she was born on time I probably wouldn't have gone for th physical that led to finding the lump (read more of Mackenzies birth story here http://thelumpchronicles.blogspot.com/2012/07/the-picture-that-saved-my-life.html). And because my cancer was found we are now in this situation. 

So again requirements for our surrogate are: 

should be under 43

BMI under 35

no more than 2 c-sections

no more than 4 births. 

If you are someone or know someone who might want to be a surrogate send me a message. 

All I want for Christmas

We have been quiet about surrogacy lately because honestly we have given up a little bit. We still have a tiny bit of hope left but not like we did 6 months ago. We feel defeated. Looking back at my blog in January (and then in June) we were so full of hope and optimism and now honestly we don't even talk about it. We don't bring up having a baby at all.

I am on 2 surrogacy boards on Facebook and I have been approached by a couple different women to potentially be our surrogate. One I turned down because she lived too far away (and her fb profile was too minimal to seem like a real person) and 2 others didn't have insurance. The other thing is how much some of these women ask for in terms of compensation. We don't have a spare $30,000 plus a c section fee plus a multiples fee plus a clothing fee plus travel and on and on. I'm not saying that these women don't deserve compensation but after you add up all of those fees they can make almost $50,000. Then I'm wondering what is the original $30,000 for? 

This month has also been hard because when we thought we had a surrogate lined up in June we imagined that the transfer would be around October and if it worked we could announce around Christmas or Mackenzie's birthday in January. I was really looking forward to telling her that she was going to be a big sister for her birthday. She told me again this week that she wished she had a brother or sister. I can't imagine why she thinks we haven't had a baby yet. She knows that I was sick and had to take medicine that made my hair fall out but she doesn't know that I can't carry any more babies. I think it would break her heart. Her hope is keeping our hope alive. 

The other reason we haven't really talked about surrogacy is because I STILL have not completely healed from my reconstruction surgery. I have been on 2 different antibiotics and 2 different ointments. Last week my surgeon wanted to open my incision and reclose it in the office. I politely declined and asked if we could try the 2nd ointment first. Luckily it seems to be working. The other bad part is that my surgeon is moving to NJ and next week is his last week in the office. I felt like we were breaking up at my appointment this week. He's been such a calm and empathetic voice for the last 3 years and I'm really going to miss him. Although- you know- I wish we never met! 

I am feeling a little pressure because I need to start Lupron shots (to go into menopause) but I need to first be completely healed  before I can even think about doing an egg retrieval. I feel like a mess. And these are the moments I get really angry. I know that life is unfair sometimes but how unfair does it have to be? Sometimes I feel like I used up all of my luck in my first 27 years and then it ran out. It's really hard to watch others announce their pregnancy and then even harder to hear people complain about being pregnant or about what their kids are doing that's annoying. I would love to be annoyed by a 2 year old right now instead of begging strangers to carry our child. 

The other day I opened my email and saw I had a comment on my blog. I was excited to see what it said until I read it. 

First I'm guessing this person just read that one blog and not any others as this has been addressed. Second- how insensitive. Is adoption the only alternative to women who can't carry their own child? The comment makes it sound like I can go to our local kid adoption center and pick out whichever kid I want. Adoption is hard and expensive and while we are moving forward with surrogacy it doesn't mean that we would never consider adoption. In fact we have. Many times. I even recently looked into more agencies. But right now we just can't imagine a world that doesn't have another biological child of ours in it. Is that selfish? Maybe. But that is our choice. 

Please share this with anyone who you think might be able to be our surrogate. Or anyone who would also want to share it. At some point we are going to have to make some tough decisions if we can't find a surrogate but we aren't ready to give up just yet. Maybe 2016 will be the year of the baby. 

Surrogate application

I have to say the hardest part of needing a surrogate is that our entire fate rests on someone else. And the part that pisses me off the most is that I would probably be able to get pregnant tomorrow if we tried. But we can't. And I hate it.

We haven't gotten any takers on a surrogate. I'm not totally surprised. We had 2 volunteers. Much more than we ever expected. But it is still hard- it feels like rejection. We are still hoping that our surrogate is someone we know but it is looking more and more like it won't be.

Our attorney's office matches intended parents and surrogates. After our bad news last week I asked how we could get in that program. I was sent an 13 page application. We have to narrow our lives into 13 pages and hope that it is good enough for someone else to pick us. There are 2 potential surrogates waiting to be matched. I have no idea how many intended parents there are.

My fear is that once they read that I have a potentially fatal illness they won't pick us. I feel tremendous guilt for being the one whose fault is that this is happening. I talked to Mackenzie last week about how she would feel if she never had a brother or sister and she said sad. I asked her why? And she said because I'll be lonely. She's all ready lonely. Some nights I'm so sad I can't even face her. It's not fair that this is the life she was born into.

I feel like we are going through the grieving process. Like we just have to accept that we are going to be a 3 person family and that is that. There are a million worse things that could happen to a family. And I know Mackenzie is beyond loved by not only us but friends and family as well. She will never want for love. But I know how it feels to be lonely. How it feels to not have someone to talk to who understands what you are going through. That's my life since I was diagnosed.

Mackenzie asked George a couple weeks ago if I was having surgery after she overheard my mom and I talking. Later I asked her if she had any questions and she said no. About 2 weeks ago she asked me if surgery would hurt when they cut my belly. I asked her why she thought I was having surgery on my belly. She said she didn't know she just thought it was. This weekend, after thinking about that conversation for the last 2 weeks, it occurred to me that she might think I'm pregnant. So I asked her if she thought I was pregnant and she said she did before I told her I wasn't having surgery on my belly. I asked her why she thought that I was pregnant and she said because I was having surgery and because I've been going to the doctor a lot. I felt so awful that she probably got her hopes up thinking that a baby was coming soon. 

Speaking of me being pregnant- I've known for 3 years now that I might not ever be able to be pregnant again but it hit me really hard recently, especially after learning I need to go into menopause. I know I am beyond lucky to be able to experience one pregnancy but man, it's been a hard pill to swallow. It is so hard to see pregnancy announcements and baby bumps because I want that for us. I pray that we will one day get to expand our family but it is SO hard to remain hopeful. 

We are almost done with our application. The hardest part is writing a statement to potential surrogates. It's hard to summarize everything we want to say in a short paragraph. But the easiest part for me was describing George as a husband and father. And of course I liked seeing what he wrote about me!

New news

Last Wednesday I had 2 doctors appointments- 1 with my GP for pre-op screening and 1 with my oncologist for my yearly check up and Thursday I had my pre-op appointment with my plastic surgeon.

My appointment with my GP was good- I got some tests run including an EKG. It's weird to be so young and have had so many tests on my heart all ready. The appointment with my plastic surgeon was good too- we just talked options and a little about the surgery. It is supposedly easier than my mastectomy so I'm hoping that is true. My surgery is supposed to start at 7:30 am so hopefully I will be home by the time Mackenzie gets home from school.

At my oncologist I got blood work (which was good) and waited FOREVER for my appointment. When I was finally called back and met with my oncologist she told me that since I saw her last year there has been a new study that shows that younger women who have breast cancer who go into menopause after treatment fair better then women who don't. I'm not in menopause. I have 2 choices- take a medication called Lupron monthly via injection until I go into menopause myself or have a hysterectomy. 

I always assumed once we had another child I would have a hysterectomy. I always felt like it would help my chances of survival but I was surprised it is now being recommended to all young women. I'm going to start with Lupron and then eventually have a hysterectomy and just get it over with. I can't see myself getting monthly injections for the next 30 years. 

We also had a friend volunteer to be our surrogate a while ago and we have been slowly going through the process with her. We were really hopeful because she would have been a great surrogate and we all agreed on everything we talked about. Then Wednesday night we found out that my doctors office disqualified her. Not for anything she did or that could have been changed. Just that which ever program they follow limits the amount of births and c-sections a surrogate can have. Which is information I wasn't given 6 months ago when I asked what the qualifications were. 

So obviously Wednesday night wasn't a great night. I think it was harder to hear that our friend was disqualified more than it was to hear about having to go into menopause. But I guess our plan now is to do egg retrieval as soon as possible (after reconstructive surgery on November 2nd) and then start Lupron. 

Which brings us to our next topic- WE STILL NEED A SURROGATE. The new qualifications we received said that she must be 43 or younger, BMI under 35, have had 2 c-sections or less and 4 births or less. 

In January when I posted about the "Year of the baby" (click for link) I fully expected that we would have a surrogate  pregnant by now. But it's been a pretty disappointing year. And we are REALLY trying to not give up hope but it's been hard to remain hopeful. Our fate remains in someone else's hands and that is really hard to deal with. We have gone through so many ups and downs in this process. And every time there is an up we start to dream about this baby and then there has always been a down shortly after. 

If you have any other questions about our feeling towards certain topics- why we need a surrogate, our opinion on selective reduction or how many embryos we want to transfer CLICK HERE for our FAQ's post. We are open to questions at any time in any forum- even if you don't think you could be our surrogate. Like I've said before- we know this is A LOT. It's more than you could even imagine- how do you tell your kids, what do you tell work/your friends and family, how are the injections and medications going to effect you. It's a lot to think about and talk to your family about.

But this new information about going into menopause has really shaken us up. Like I said- I always thought I would have a hysterectomy anyways but now there is a rush on me at least starting these injections soon. And not having a surrogate all ready made that information even harder to hear. Please at least consider sharing this post with your friends or family who you think could help. We would love to use someone we know but are getting to the point where we might have to use a stranger. Mostly we hope that our surrogate will live close to us so we can go to appointments and be there for the birth.

Thanks again for your continued support. I never imagined at 31 (almost 32) that I would be sitting here asking for a surrogate and waiting to have my reconstructive surgery for breast cancer. But this is our new life and we will continue to soldier on. 

Genetics

After much debate George and I decided to have a genetic test done to see if we were carrier for any diseases. It's a weird thing to be able to do because it could potentially change a lot. And sometimes ignorance is bliss. But I'm really glad we did it. It is good information for our families to have as well, especially Mackenzie and our future child/ren.

It only took 2 weeks but we got the results back last Thursday. The great news is that we are carriers of different things so there is almost no chance of having a child with any of these disease. Of course they will never say 100% chance but we will take the odds we have! 

George is a carrier of Biotinidase deficiency & Mucolipidosis IV. Biotinidase deficiency is just a vitamin deficiency that is really treatable with medication so that's good news. Mucolipidosis IV is a break down of fatty acids that causes a metabolic disorder. Although most people with this disorder can live to their 40's they never learn to walk and their mental capacity stays around age 12-18 months (per Counsyl's website). 

I am a carrier of Spinal Muscular Atrophy. This was kind of scary for me because my grandmother died of ALS before my brother and I were born so I was worried that this might mean I have the gene for ALS as well. But per the lady from Counsyl during my phone consultation there are different genes for SMA and ALS so my risk of ALS is not greater than anyone else. 

It's weird because I follow a woman on instagram whose daughter was born with SMA and that's how I first learned about it. It is such a nasty disease so when I found out that I was a carrier for it it was shocking. I am just so glad that George isn't a carrier for it as well. Of course there are no guarantees but the chances of us having a child with SMA are pretty small. But we do know that I am the queen of slim chances! 

We are also going to have the embryos tested for chromosomal abnormalities. We are just trying to get the best possible odds possible for our future transfer. 

Speaking of embryos- we don't have a date yet to do egg retrieval. I have my reconstruction surgery on November 2nd. This is the surgery I was supposed to have like 1.5 years ago but have been pushing off. So I finally scheduled it. This takes priority over egg retrieval and I want to make sure I'm recovered before we start scheduling egg retrieval. 

Truthfully I'm not really looking forward to either. But I am excited to see how many eggs we get this time and how many healthy embryos we can make. It's so interesting that some people get a ton of eggs during retrieval but then only end up with 1 or 2 good embryos or some people get like 7 eggs and almost all become good embryos. We are optimistic that this time we will get a lot more eggs and then end up with good quality embryos! 

FAQ

As we have been learning about surrogacy for the past 3 years sometimes I forget that not everyone has as much information as we have. We know a lot but are in no way experts! Especially since we haven't actually used a surrogate yet. So I thought I'd put together a list of questions that people might have or have asked us and answer them- feel free to ask any other questions you might have!

Why do you need a surrogate if you don't have cancer anymore?
This is probably the most common question we get. The biggest reason is because while it's true that I am in remission the chance of recurrence even after 3 years is still a huge possibility. I am currently taking tamoxifen which is an estrogen antagonist. Being pregnant means I would produce a lot of estrogen which is what fuels my cancer. So if I was pregnant I would have to stop the tamoxifen (which is blocking estrogen essentially) and I would be adding in a lot of estrogen in my body. While taking tamoxifen isn't a guarantee that I won't get cancer again, my doctor and I aren't comfortable risking me being off it to be pregnant. My prescription for tamoxifen is for 5-10 years and I've only been on it for 2.

Edited to add: my oncologist recently told me I need to go into menopause because new studies show that young women in menopause after cancer have less rate of recurrence. This news means that any chance of me ever being pregnant again is over.

Does the surrogate use her own eggs?
Not in our case. We are going to use a gestational surrogate which means the embryo will come from George and I and then be implanted into the surrogate. We will do another egg retrieval and then fertilize the good quality eggs we get that will then be implanted into the surrogate.

Isn't there a possibility of the surrogate carrying a lot of babies?
Technically there could be however we wouldn't want more than twins. Our plan is to implant 2 embryos and if both stick then that's great. If one sticks that's great. And if none stick then we will try again. There is of course, a chance that either or both embryo could split into 2 or 3. If there were more than 3 then we would, unfortunately, chose to selectively reduce. I know a lot of people might not agree with that and it feels like beggars can't be choosers but in this case we actually can chose. Carrying more than 2 babies just isn't safe for the surrogate or the babies nor do we feel capable for caring for that many children.

Edited to add: As we have gone along this journey we have realized that transferring more than 1 embryo only gives us a better chance of having multiples. We have changed our position on how many embryos to transfer- as of now we would only transfer one embryo unless our doctor recommends otherwise.

How do I qualify to be a surrogate?
My doctor said his ideal surrogate would be 40 or under (although he said age isn't THAT important), in good health and has given birth to healthy children. Having a child is a state law for surrogacy. I used to think the surrogate had to be married but that is not the case. However if she is married her husband obviously has to agree to his wife being a surrogate.

Edited to add: new guidelines from my doctor say a potential surrogate should be under 43, BMI under 35, no more than 2 c-sections and no more than 4 births. My doctor follows the ASRM guidelines and won't budge from these requirements.

The first steps are being medically cleared by my fertility doctor, George and I and the surrogate and her partner if she has one have to be cleared by a psychologist and our attorney will check the surrogates insurance to make sure it covers her pregnancy. Once those things go through we would go to contract which means we would both fill out the questionnaire where we agree to all of the questions and submit that to my attorney. The surrogate can either hire her own attorney (that we would pay for) or use an attorney recommended by our attorney (it can't be our attorney because of conflict of interest) and once we agree to the contract the process of the surrogate being pregnant would begin.

What is the commitment in terms of appointments and time off work?
I don't have a definite answer for this. In the beginning there will be a couple of doctors appointments and a psychologist appointment. Obviously when it gets closer to transfer time there will be more frequent appointments but it is my understanding that the surrogate won't have to necessarily go to the Shady Grove I go to to have this done. And their appointments are pretty early in the morning. And then once the surrogate is pregnant there will be a couple appointments with Shady Grove (every couple weeks) and then she will be released to her doctor who will see her as a regular pregnancy- once a month until she gets closer to the due date.

Why don't you just use an agency to find a surrogate?
We would love to do this. In fact our attorney's office matches gestational surrogates and intended parents for free. But we don't have an extra $20,000. This process cost around $35,000 without considering the payment to the surrogate. To be frank- we can pay a surrogate something but we just can't afford the going rate which is why we have been hoping that someone we know will want to be our carrier.

What would I have to pay for as the surrogate?
Nothing. George and I and your insurance would cover everything. All of the pre-screening, all of the attorney expenses, all of your co-pays and out of pocket expenses would be covered by us. This is something that our contact would cover and would also include how much we would pay the surrogate per month, per cycle if the first cycle doesn't work, if shes carrying twins, ect.

I am afraid that I will want to keep the baby once it is born if I am your surrogate. (Not a question but a legitimate concern)
I can totally understand this concern. I felt totally bonded with Mackenzie the entire time I was pregnant, from the second I saw the positive on the test. But I think that it will be different going into this knowing that in the end you won't take a baby home. Not everyone can handle that, and I totally get it. But that is also why there is a contract in place.

What kind of contact do you expect of the surrogate during pregnancy and after the birth?
During the pregnancy I expect to go to every prenatal appointment. This is one big reason we would like the surrogate to live fairly close to us. We don't need a text or email for every little movement or kick but I guess depending on who the surrogate is and how close we are with them before the process started we wouldn't mind!

Part of the contract will talk about what will happen in the hospital after the baby is born. George and I are willing to leave some of this open to the surrogate. George and I want the baby to be handed to us directly after birth. After the birth, the surrogate may not want to see the baby that much or she may want to see the baby as often as possible. We want to do whatever feels most comfortable for all of us. I'm certainly not going to rip a baby out of our surrogates arms and never let her see the baby again. The surrogate will bond with this baby while she is carrying it no matter what. So to just take the baby away without giving her a chance to come to terms with her journey ending is not fair to the surrogate. Our hope is that the hospital won't be too full and George, the baby and I will be able to have our own room and the surrogate will be able to have her own room (again at no cost to her). Otherwise, as I understand it, the only time we will be able to take the baby out of the nursery is when we take it to the surrogates room. And she might be okay with that (we are okay with that too) but I just think it could become a little burdensome to all of us.

After we all leave the hospital I guess future contact will depend on our relationship with the surrogate. Again, I know that she will bond with this baby so I imagine that we will continue contact. I guess the amount of contact will be something we will have to figure out as time goes on. I don't necessarily think that any of us should feel pressure to see each other a certain amount of times a month/year but I guess we will have to see how the whole process goes. We certainly don't want to overload the surrogate with baby information/pictures after she delivers in case she might need some space to recover from the whole process.

What say does the surrogate get in her medical care regarding the pregnancy and testing, diet, ect?
Our contact is VERY specific and all of these questions have to be agreed on and in our contract before we can proceed with any type of embryo transfer. Some of the questions- as mentioned above- talk about selective reduction and abortion. We have answered most of the questions that we would like the option to have our carrier selectively reduce or abort the baby if there are life threatening problems and this is something that our surrogate would have to agree with us on. Obviously we hope that the baby is healthy and we don't have to worry about any of that. We are getting ALL of the genetic pre-screening available (on George and I and the embryo before it is transferred)  but I guess there is always a chance something goes wrong. But ultimately our number one concern is the health of our surrogate. We would never ask her to keep carrying a pregnancy that is detrimental to her health.

In regards to while the surrogate is pregnant- these are things we will have to discuss with the surrogate and decide what we are all comfortable with. I didn't do any testing while I was pregnant with Mackenzie and I kind of expect the same for our future baby, especially since we are doing so much genetic testing all ready. In terms of diet, we just expect that the surrogate will abstain from all tobacco, illegal drugs and alcohol during the pregnancy. I think most women change their eating habits at least a little bit while their pregnant and I'm not really worried about that unless her doctor thinks there is a problem.

In terms of what doctor the surrogate will see- her own. I think its important for every woman to find a doctor that they are comfortable with so we wouldn't ask for her to change. That goes for hospital as well. We live in an area where every hospital is reputable and we know our baby would get the best care so we will deliver wherever the surrogate is comfortable.

Will you expect the surrogate to pump and provide breast milk?
Again we will leave this up to the surrogate. Some might want to do this for us and the baby but we aren't expecting it. I can imagine after giving birth the surrogate might want to be done with anything baby related and we totally understand.

Who will decide the birth plan?

Ultimately because this is our baby George and I will make medical decisions on the babies behalf. However, like I said before, our surrogates health is most important. Because the surrogate will have all ready given birth the birth plan might be set from the beginning (i.e. Must have a c-section) but as we all know not every birth is the same. We are totally open to discuss this with the surrogate as she may have specific things she wants in the room or specific way she is hoping for the birth to go. Another thing to consider is that George and I would like to be in the room for our babies birth. Again this may not be possible for whatever reason but it is something we would all have to discuss.

Why don't you just adopt/why do you need to have another child? 

We've thought about it all. We have looked into adoption extensively. But we feel like we have the resources to have a biological child so that is what we would like to do. As for the second part- believe me we have gone back and forth with this for years. Recently I went on a trip to visit my bestie Laurie in Massachusetts with Mackenzie and it was SO easy! She is at such a great age- she gets her self dressed, she plays by herself, she can get herself in and out of the car and she is SO independent! When I got home from Massachusetts I turned to George and asked- do we really want to do this? And we talked about it for a few minutes and then I just started crying. It's easy to pretend that we are handling this well emotionally but the truth is that sometimes we aren't. It's easy to not think about all of this for awhile but then when you do it really hits you. We want another child. Like today. We talk about him or her all the time and Mackenzie just started telling us that she says a prayer to herself that she will get a brother or sister. I thought about how hard it would be to tell Mackenzie that we changed our mind and that we were just going to be a family of 3. And I thought that if that's what George and I decide then that's what will happen. That's not why we want another child. But the thought of not expanding our family feels like a part is missing from our hearts. We had a lead on a potential surrogate and we got our hopes up- through no fault of any of us- but we didn't really realize it until it was over. I realized that I had been looking at car seats and all the things that go along with newborns or twins and I got really caught up in it. So I think that is why we have been kind of quiet lately. We don't want to get our hopes up again so it all feels kind of blah right now- which we hate. 

I have to say that this has been one of the hardest side effects of having cancer. It has lasted 3 years and there is no end in sight so far. We have done most of what we can do in terms of our testing so we are just waiting. When we went to our financial appointment she asked if we were ready to start right away or in August and I just thought- wow I can't believe it's going so quickly. Then when I realized it was September I got really sad because like I said before we had our hopes up and so a timeline started in our head and we planned all of it- when we would do the transfer, when/how we would tell Mackenzie/others and now there is no timeline. We know that this is A LOT. I can't say that enough. After saying all of this- we aren't giving up hope and we aren't going to give up. It's not happening in our timeline (or we'd have a 2.5 year old) but we are adjusting. 

Hope anchors the soul

When we left our financial appointment a month ago I started to get really emotional. This process is A LOT. There's a lot to know, a lot to do and a lot of emotions that go into it. While we were driving home I just kept saying in my head- hope anchors the soul, hope anchors the soul, hope anchors the soul. This has been my motto for 3 years now. It has kept me together through the toughest times.

Then "Fight Song" came on the radio and I started tearing up. Especially these lyrics. It's just going to take one person making one decision that's going to change out entire world. 

We are trucking along. Honestly this surrogacy journey has been almost as hard as having cancer. At least after I was diagnosed there was a definitive path I had to go on. With surrogacy there are so many unknowns and it's really hard emotionally. 

I feel in a lot of ways like a failure. I'm supposed to be able to provide children for my husband and daughter but I can't. It's hard to be reminded of that everyday. I know neither if them would ever say that to me but that's how I feel. I desperately want to be able to complete my family the way that I'm "supposed" to- by me getting pregnant. But I can't. And that's been the hardest part. 

We have completed 5/11 items off our checklist from the fertility doctor. We are figuring out the exact amount of money we will need and then hopefully will be able to keep moving along. We also have to decide about the level of genetic testing we would like to do. 

We know the right woman is out there. It's an incredible thing we are asking someone to do for us but I know she's there. Obviously we would love to get started as soon as possible- since we have been waiting 3 years to get pregnant. I have the due date calendars essentially memorized and we would love to have a baby next summer which would mean someone would have to be cleared ASAP. But obviously we know that beggars can't be choosers. Again we are more than willing to answer any questions you might have- no obligations. We have a questionnaire from out attorney that has a lot of questions that have to be answered that is pretty helpful. And of course we have a team at Shady Grove that are available to answer any questions. 

I know not everyone understands this route we are taking but this is the course that we think is best for our family. Thank you again for continuing to share our story and supporting us! We couldn't have made it this far without you all! 

Surrogacy Update

This July I felt like I had THREE full time jobs- my actual job, the fundraiser and trying to have a baby via surrogate. Thanks to everyone who shared my surrogacy post. Sometimes these situations make you feel so alone but with each "share" it felt like people were really behind us with this.

WE ARE STILL LOOKING FOR A SURROGATE. We appreciate anyone who has even thought about it. Being a surrogate is hard on the surrogate and her whole family. And there is A LOT that you would have to do. Obviously I'm not trying to scare anyone away but it's the truth. In the last 2 months we have learned a ton of new information and we have been reading and learning about surrogacy for the last 3 years.

Here's an update about what we have been doing the last 2 months-

When we first talked to our fertility doctor about this he set up a team for us including a clinical coordinator, a nurse and a financial coordinator. They have all been SO helpful. I love that everyone is just an email away I can just shoot them questions (because I have A LOT!).

We met with the financial coordinator first. We could have had a phone appointment as she is in Rockville but I'm a visual person and I hate to talk to people I don't know on the phone. I felt like we got a lot more information that we would have otherwise and felt good about the appointment when we left. Right now I'm in the process of begging them for donated medications so we will see how that goes. I donated my medications back to Shady Grove after I was done with my last egg retrieval so I feel like they could donate some back to me. Even if it's just one type of medication or half of the medication I need. Medications alone are going to cost like $3000-$5000!!

We also got the list of questions from the attorney's office that we would have to discuss with a potential surrogate. I thought I kind of knew what all of the questions would be. And I knew a bunch but there are A LOT of questions on there that I didn't even think of! Like- what if you want to abort the baby for medical reasons but the surrogate wants to keep it? Who would ever think to ask that!? I guess that shows we have an attorney that knows what she's doing- she should she does a TON of these!

George and I have had blood work done (the first of many). We also have to have genetic screening done. There are a lot of extra steps to do if you are using a surrogate because any potential diseases or problems we have could be given to her because she's carrying our baby. And of course our future surrogate and her husband have to go through the same testing for the same reason. Eventually we will all also have to be evaluated by a psychologist. I'm interested to see how that part will go because I have no idea what he or she will ask us.

I got approval from my oncologist to go through another retrieval so that was good news. She approved it last year when we talked about it at my appointment but my fertility doctor wanted it in writing to to talk to her so I'm just glad we are all in agreement. My oncologist is probably happy that I won't be asking her every 5 minutes when I can have a baby anymore!

Things are moving along. We have to get the finance part in order but there are more steps we have to complete before we do that. I'm ridiculously pissed off that my insurance doesn't include any type of IVF treatment. In fact when I called she said it was "excluded". I just don't understand how a medical condition could be excluded. I know that having kids is an option and not necessary but so is undergoing chemo or taking any other medications (like viagra- which is probably covered). Once I'm through part of this I'm really going to figure out how to talk to my employer about this because it just doesn't make sense to me. I'm not saying they should give me $50,000 or unlimited lifetime coverage but could you cover like 25% or 10% or SOMETHING?!

This process feels like it's moving fast and slow all at the same time. It feels like there's a million things going on at once and then there's a lull and nothing is going on. I just cannot wait to hold a baby in my arms and finally say this is our complete family! Mackenzie is still talking about "when the baby is here" or "when we have our baby". I was thinking the other day of how in the world we are going to explain to her that our baby was born from someone else. I'm sure we will figure it out. I guess it would be the same if we were adopting a baby- except this baby is biologically related to her/us. But the excitement I feel when I think about telling her she is going to be a sister is absolutely overwhelming! It's the thing I look forward most in my whole life.

I feel like I've been asking for a lot lately (donations, ect) but if nothing else if you could just share our story. We really want to use someone we know or a friend of a friend and not a stranger. I can't tell you how much it sucks that we can't just do this ourselves. We would have a 2.5 year old right now. But I got diagnosed with cancer instead. Although if I was healthy and had a normal pregnancy I would have loved to be a surrogate I can understand anyone's hesitations with it. It is a lot for a family to go through. But we want to answer questions. And again- if it doesn't work out then it doesn't work out. I truly believe there is one perfect person that will be our surrogate for us and if that's not you it's okay. But we aren't going to stop looking until we find her. 

If you aren't sure and want to know more let us know. Our doctors and attorney are so helpful and are willing to answer any question. 

Thanks again for your continued support! 

HELP NEEDED

I'm sure by now you all are aware that we want to have another child. Want isn't even a strong enough word. And by we I mean all three of us.

To increase our odds we have decided to do another egg retrieval. After all this time and being SO adamant about not doing another one it occurred to us that maybe we want more than 1 more child. And also we shouldn't put all of our hope into this one egg. Before we did the first retrieval, we were on the fence about it and even at one point had decided not to do it. But in the end we decided to do it because we knew that we would regret it if we didn't. Obviously the first egg retrieval went almost as bad as it could possibly go- we got one egg out of it. We were expecting at least 10. We had a phone appointment with my fertility doctor the other day that really helped us clear up what happened last time and how it will go moving forward. It was nice to hear from our doctor that last time he would have cancelled it if we weren't under the circumstances that we were under.

Its especially nerve wracking to do another retrieval knowing that it's after chemo and the per my blood work we have a "fair" chance of getting 5-10 eggs. There are 4 categories- Excellent, Good, Fair and Reduced. We are 1 number off having a reduced chance. So because we only got 1 egg last time we are obviously very worried about doing a retrieval again. I brought this up to my doctor and was encouraged by him and that he would up my doses of medication to try to stimulate more eggs. And this time we have the chance to stop a round and start over- a chance we didn't have last time.

The bottom line to all of this is that we need a SURROGATE. Like today. We need someone who is willing to give us this unselfish gift. It's a lot to deal with. There will be injections and ultrasounds and medical exams, psych exams and legal paperwork. But I know there is someone out there who has it in their heart to do this for us. Specifically my doctor would like us to find a surrogate who is in great health and has had a child/children. We know this person exists. Maybe it will take a little while to wrap your head around having a child for someone else and not getting to keep it after you give birth. But you're out there and we are ready when you are.

As you can imagine it's been super hard for us. It's like reliving the day I was told I had cancer all over again. For the last 3 years. For Mackenzie it is probably even harder because she doesn't really understand why we aren't having another baby today- she keeps saying to me- "maybe the baby is all ready in your belly". It's heartbreaking. She asks me to swaddle her baby doll every night and she holds her arms out like she would if she was going to hold a real baby and when I go check on her before I go to bed, she's still holding her baby Rose so carefully. For 3 years, I have thought about the moment that I would be able to tell her that she was going to be a big sister. Even before all of this cancer stuff. When we had planned to start trying to get pregnant. And for 3 years I have pictured the look on her face when she finally gets to meet her little brother or sister. We should be complaining about terrible two's right now but instead of getting pregnant in 2012 I was diagnosed with cancer. We think about this baby all the time. He/she has a name. Mackenzie talks about him or her (she prefers to have a sister obviously) and what they'll be like. We are ready.

Mackenzie holding her babies Rose and Annie.

I remember writing once in my blog that I can't really think about how me having cancer effects other members of my family and selfishly I do the same thing now about not being able to have a baby. When I first heard the doctor say it could be YEARS before we could start to even think about trying and then maybe it still wouldn't even going to be possible I almost told my husband to leave me. He wouldn't have but I just felt like I was ruining his life. We talk about all of this very matter of fact because otherwise I would just be a sobbing mess and we wouldn't be able to finish conversations. It is so selfish but I do my best to not think about how this effects them. I know how it effects George but to think about how it effects Mackenzie is devastating.

Mackenzie's drawing of our family including our future baby (and my long hair)

I don't even know how many embryo's we will end up with. They will all be tested and hopefully that will improve our chances of having a baby. It's not going to be easy- for us or our surrogate and her family but I know that you are out there. There are a lot of resources online but also please don't hesitate to reach out to us. We have a lawyer you can talk to as well as my fertility doctor if you have ANY questions. This will be a long process until our surrogate actually gets embryo's implanted and there is a chance to bail each step of the way. I can assure you that it won't alter our friendship or how we feel about you. Knowing that there is someone out there who would even let being our surrogate cross their mind for a minute gives us even the slightest hope.