A good time was had by all

I just got back from meeting two other ladies doing DE at my clinic. No thanks to the nurse mentioned in the previous post - they both just happened onto my support group and contacted me. S emailed me about a month ago and we met up a couple of times and then M just contacted me last night. They both hope to cycle in November

The three of us got together over coffee and had a wonderful time. I am amazed at how funny infertility can be in the right environment. We shared stories of the first time our husbands had to submit that sample, talked about how we should keep a guest book for all those doctors and nurses who have visited our . . . well, you know . . . , commiserated over how our clinic tends to treat people like a number, etc. It was a wonderful time. I hope we can get together again soon.

The funny thing is, we talked for hours, but while I can tell you intimate details about the ladies' reproductive system, I would be hard pressed to come up with one of their husband's names. It is amazing, and sometimes still surprising, how people who are complete strangers can connect so instantly and deeply when we share the experience of infertility.

Thank you, S & M ("S & M" . . .hee hee ) for a wonderful time.

In real life connections

I have recently emailed my clinic to ask them to pass on my name and contact information to anyone doing DE this cycle. I was hoping for an IRL cycle buddy. Her response was

This can be a little touchy due to patient confidentiality. I promise if anyone else going donor egg this series says anything to me about wanting something like this I will pass on your name and number to them.

I just don't think most people will think to ask. Which got me thinking maybe I could just post it somewhere . . . which made me wonder if other people would then post too.

What do you think? Would you post your contact information at your clinic? Would you contact someone who posted her information?

Maybe my clinic is just behind the times. It just occurred to me that an electronic bulletin board would be so much better. Does your clinic have online chat forums available? If so, do you use it?

Depending on the response I get, I might just try to encourage my clinic to do something similar.

My definition of Happiness

I want to join Mel's discussion about happiness and I am already a couple of days behind. I have not read the book she is currently reading, but have read Stumbling on Happiness - a book I very much liked and was likely influenced by.

It's funny how hard happiness can be to define, yet rarely do we not know if we are happy or not. In this moment, I would say that I am not unhappy, but not exactly happy either. (I'm sleeping and having a bit of a poor me day about not getting the FREAKING CHANCE TO HAVE MY OWN GENETIC CHILD AFTER 5.5 YEARS OF TTC, 4 PREGNANCIES AND ONE EARLY INFANT DEATH!) Sorry, not your fault, I shouldn't have yelled at you. But I digress . . . the point is I know happiness when I feel it. As for a definition, that is trickier.

I do think happiness is joy and pleasure and bliss. It is also contentment and that peaceful feeling when I am "in the moment" and present in my experience. I don't think it is about fulfillment or living a virtuous life (was that Aristotle?) although those things can help. I know I have been happy for fleeting moments in really dark times in my life. I have also been very unhappy during happy times in my life. Happiness is a good feeling that makes you smile. Happiness is in the moment - I don't think it exists outside of the emotion. If remembering a past event - or envisioning a future event - makes me happy - it is the current moment that is the experience of happiness.

Hmm . . . I should not quit my day job and become a philosopher! I hope you get some kind of idea of what I mean.

I also think happiness is a choice to some extent. Granted, it is easier when things are going well anyway, but I have found happiness when things haven't been going well. There was a moment - about a year and a half ago now - after being very unhappy over the loss of our son - when I realized expecting a baby to make me happy wasn't very fair to baby. "Welcome, little one. As your first goal in life I would like you to make me happy." Not very fair to a brand new life, I decided. So I set out to find happiness without a child.

I did - again to some extent. I got better at enjoying the moment. I could once again feel the breeze on my face, enjoy my husband's touch, dance and laugh. It is not always easy, but it is much better than living in the dark place I lived in for more than a year.

I also realized that I wasn't all that happy before we started TTC. Well, I was ecstatic compared to some days post TTC. I remember how my husband and I laughed so much easier and so much more often. I remember quietly whispering to each other (to not temp any jealous gods listening in) that we couldn't believe how lucky and perfect our lives were. I also remember getting down about little things. At least things I now think of as little - like not owning a big enough house or getting the right kind of recognition at work or not having enough free time or having bigger-than-I'd-like thighs or many, many other things.

I digress again. Please see the above paragraph in blue and will leave my other ramblings on happiness for another post.

Me? Really?!

I have been nominated by Leah and Fertilize Me for the



Honestly, I feel so honored. I was thinking last night how I feel like such an inadequate blogger (feelings spilling over from infertility?) - I don't feel I keep up well enough or comment often enough. I worry that I say the wrong things when I do comment. So it was just nice timing and I am very grateful to these two ladies.

So, now I need to figure out 5 more lovely ladies to nominate. Like so many other's have said, it is tough to list just 5, but here goes:

• Lori for both her blogs: Weebles Wobblog and Drama 2B Mama. She often leaves me with so much to think about.
• The Shifty Shadow. A new blogger who has survived a great deal and had me hooked by the quote in her title bar.
  
• Foreverhopeful at Wishing it would get easier. She is just ahead of me on the DE journey and just so positive. The love she and her sister (her donor) share is amazing.
• Pamela Jeanne at Coming 2 Term: She may have already made the rounds with this one - so she gets nominated more than once. She is a constant reminder to be true to the infertility community no matter how my journey turns out in the end.
  
• Beaten but not bowed because she is always posting about other people's updates and supporting other DE blogs

Ok ladies, your turn.

I'm up, I'm down, I'm . . . neutral?

First of all thank you for all the wonderful comments to my last post. They were all so helpful. I mean that - for those of you worried that you were saying the wrong thing or that it wouldn't be well received. I feel so fortunate to have such a network of experience and understanding available. I have felt very peaceful about the whole thing the last couple of days.

I may not be the norm here, but I find that my moods surrounding TTC are either very positive (hopeful, excited, etc.) or quite negative (tired, anxious, scared). It is rare when I just feel something close to neutral. It is so rare that last night I couldn't figure out why I felt so odd until I noticed that the normal background anxiety was gone. I wasn't looking at the calendar 10 times a day recalculating the number of days until the next cycle starts. I wasn't lamenting the loss of my genetic connection. It was almost as if I wasn't TTC at all. Does anyone else have moments like this when you realize that most of the time your brain really is all about TTC with very little room for anything else? I'm not complaining, mind you, it was quite nice.

Now, back to our usual programming:

We have decided to us go with the generelix protocol. I realized that I am thinking about going with Belinda to her monitoring appointments so I am going to be there anyway if they need to monitor me more closely than if we went with the lupron. The next cycle update should be Thursday when Belinda gets her pre-cycle physical and we get the antral follicle count. (Please be an over achiever Belinda!) After that, nothing but the wait to the medication start date . . . not that I will be counting.

Not worthy?

Am I the only one that feels like DE is a good idea in theory, but when it comes down to actually participating in a cycle it starts to seem more . . . well, personal, might be the right word. Said another way, I can logically feel good about the greatly increased chance of us having a baby with DE. I can also get excited about being a mom again and I am often ok with the child not being mine genetically. But when it comes down to actually doing the cycle - especially the stim part of the cycle - it seems like it is going to be daily reminders of "you are not worthy"

I have tried so hard to make a healthy baby. I have done all the alternative stuff that usually comes to mind - I have done acupuncture, yoga, given up wheat and dairy and "cold" foods, changed the way I thought and exercised and even went to a holistic physical therapist who told me, "It only takes one sperm if two people truly love each other." Yet despite all my hard work and dedication, the coach is telling me to sit this one out and bring in a pro instead. I feel like I have been benched. I can't even leave the game and come back when it is my turn again. I need to sit and watch someone else do what should have been my job.

I know I can survive those two weeks. I have certainly been through worse, but I think it will be really hard for me. Maybe it's because I can be a bit of a control freak and I don't want to let go enough for someone else to step in. Maybe my therapist is correct when she said I feel "overly responsible" and feel that I am abdicating my responsibility. I don't know. Maybe someone else out there can relate and tell me how she did it.

Oh - and I have only about 2 days to make a decision that may negatively or positively impact how I feel about those days of stim. My nurse has offered me the choice of a lupron or generelix protocol. Here is how I see that breaking down:

Lupron: (The clinic's preferred option) I have never taken lupron before and it is the one fertility drug that really scares me because of the possible long term side effects (admittedly, mostly anecdotal evidence). Taking it now makes it feel like the drug for the "losers sitting on the bench."

Generelix: I would spend less time (from my current understanding) taking any drugs at all which translates to more time ignoring the fact that I am not cycling with my eggs. The downside is that I would be monitored more closely - meaning more time in a waiting room feeling like the 4 time ivf loser who now has been further bumped to "not your eggs" status.

Ironically, I used to look forward to monitoring days. I liked trying to connect with the ladies in the waiting room and I liked the interaction, though brief, with my RE. With the 4th ivf I was already starting to withdrawal from the other women in the waiting room knowing (however incorrectly) that they would get pregnant easily and I was, by comparison, found lacking. I think I may still enjoy the connection with my RE, but there is going to be, "yeah, we don't really care about your ovaries" looming in the room.

I know a reframe is in order here. I should probably stop considering myself "benched" or "a loser". The best I can come up with so far is just reminding myself that I will survive no matter how emotionally challenging it may be.

On a happier note, I was feeling very excited about this cycle just yesterday. My boss took me and a coworker out to this beautiful resort town in Canada called Niagara on the Lake last night and we had a great time. There was good food and a wonderful atmosphere as we strolled though the town in the wind of a coming storm. We even found a geocache in the dark. I was feeling good and peaceful in general and suddenly a warm, happy feeling washed over me with the thought that I might actually be pregnant with a viable baby soon.

There. Now it isn't only a "poor me" post. Does anyone have any thoughts or recommendations on getting through this cycle?

I'll take infertility, thank you.

There is nothing like a little perspective to help me appreciate how lucky I am.

Here is an article about women in Iraq who are prostituting themselves to feed their children.

It was this quote at the end of the article that really got to me:

Suha says as a young girl she dreamed of being a doctor, with her mom boasting about her potential in that career. Life couldn't have taken her further from that dream.

"It's not like we were born into this, nor was it ever in my blood," she says.

What she does for her family to survive now eats away at her. "I lay on my pillow and my brain is spinning, and it all comes back to me as if I am watching a movie."

I have often thought how far reality has taken me from my dream. I can also relate to my brain spinning and reliving past events that I wish were different. Yet, I have so many wonderful things in my life and resources Suha will never have.

This has also gotten me thinking about how the realization that life isn't how we pictured it may be the toughest thing to accept with infertility. It just seems to me that people who have been through infertility hell (however that is defined by that individual) and come out the other side, the subsequent losses / setbacks are easier. Maybe because there has been some acceptance that life shows up how it will - not how we want it to.

Does that make sense? Does it seem to you that once you survived that event even though your "stats" got worse or you were no closer to having a baby, infertility was still easier to deal with? Maybe we just become stronger or perhaps just more numb, but maybe it is because we just get better at accepting life the way it is. And if that is true, wouldn't it be great to be able to teach that to our fellow infertiles so they could avoid that dark place altogether? I would love to spare people that journey. Sadly, I suspect it can only be learned from the journey itself.

Absence and a fonder heart

Yeah, I am missing my hubby pretty badly right now. Tomorrow morning it will be four full days since I saw him last. I am sorry to all those who are separated from their loves for really long times - I know it is like a fertile saying, "It took me 6 WHOLE months to get pregnant. So stop reading if you are going to be disgusted. I am about to go on and on about how wonderful my dear husband is.

Brad is the most wonderful, kind and patient person. He is the optomist that balances my pessimism. He is my touchstone. I miss laughing together and reading to each other and just the feeling of his skin next to mine. I miss the way he makes fun of me (playfully) when I am not tidy - "Are you done with this wrapper that has been on the counter for two days?" I love the way he calls me his "little trooper" as in, "Buck up, little trooper!" I miss the way he knows just when to say, "All is well" or "Everything will be ok."

I love that he is a part of my life - and I only have him to thank. He pursued me in our early days for much longer than most men. One of his best friends said I was a dead horse and he needed to move on. Even after we started dating, I sometimes freaked out because it was getting too serious too fast (by fast I mean we had known each other for 1.5 years and dating for about 6 months). Yeah, I was scared of a serious relationship. Whenever I would get too nervous, he would just ask, "Are you having fun?" To which I always replied, "Yes." His reply was, "Good. When you stop having fun, let me know and I will walk away." I remember how his eyes lit up and his body acted like I had just breathed life into it when I finally had the courage to say, "I love you."

I remember one time he was holding my hand, lifted our hands to the sky and said, "You love me, you just don't know it yet!" I didn't know it then, but I do know it now.

Thank you, Brad, for sticking it out and helping me realize that we could be so good together. Thank you for putting up with my messiness, for taking more "Bradley time" than you get, for listening to me work out issues about infertility even though you have heard the same things over and over and over again. Thank you for picking me up off of the floor and keeping me breathing in those dark days after we lost Ernest - to your own detriment at times. Thank you for reminding me how lucky we really are. I love you!

An emotional and physical boost

It has not been a very good day. It hasn't been bad exactly, more melancholy than anything. We didn't sleep well last night, we need to mow the lawn, I fly out at 7:00 am tomorrow for work.

Thankfully we have access to the one true sap of goodness, health and happiness.

We are off to our favorite espresso stand to get an iced mocha!

All. Is. Well.

We might even get around to mowing the lawn afterwards.

Update: The lawn is mowed and the spirits are lifted.

Choices

I had an interesting discussion with a good friend today and I had a couple of revelations. Or at least what seem to be revelations. I have too much experience with waffling about how I feel on this infertility road to fully commit to any idea that hasn't withstood the test of time.

The first thing that struck me is that I really am doing quite well adjusting to - even embracing - the use of donor eggs. Not that I don't have my moments of sadness. Actually, my moments of sadness are also moments of hope. It has all been very confusing at times. I recently told Brad that I feel like crying, but I am too happy. As I was trying to explain all these conflicting feelings to my friend, I sorted out that I am doing quite well and I feel guilty about it.

Sounds crazy, doesn't it? I could understand if we were talking about donor sperm. It would make sense to feel guilty about being more excited to have a baby than sad about my husband losing his chance for genetic offspring, but how can I feel guilty for not feeling bad enough about my own genetic component? Maybe it is similar to running a race. This is a very important race and I am going to cross that finish line no matter what it takes. But the finish line keeps moving farther and farther away and I am getting more and more weary. "I can do it", I tell myself. "Just keep going . . . one more step, one more try." And then someone (actually many someones) comes along and offers to help me make it over that line. I am grateful for the assistance, but then I wonder, "Is it cheating? Does it still count if I have help? Could I make it on my own if I just try a little bit longer?"

I have an answer to those questions. They are: No; Yes; and Maybe, but I am ok if I never find out. These answers may not be inherently true, but is my choice to believe in them.

There is another choice I have made today. It is a choice I hope will feel as good tomorrow as it does tonight. Here is how that choice unfolded:

While I was talking with my friend I wondered when I would feel like the child (if we are fortunate enough to get pregnant and have a baby) was mine. Would it be sometime during the pregnancy? After the child is born? Will it feel weird to visualize the embryo implanting in my uterus knowing that the embryo was not from and of me? "Why not just decide?", my friend asked.

She used the right words because it reminded me of the day I knew I would spend the rest of my life with Brad and it is a story I love to tell. We dated for a long time mostly because I was afraid of ending up in an unhappy marriage. I knew that Brad was capable of loving me forever, but I wasn't sure I could stay in love with him. Then one day while I was in the Peace Corps, about four months since I had last seen him and five years since our first date, it occurred to me that I could decide that he was the love of my life. I could just commit fully to being in love with Brad - forever. In a split second all my doubts about staying in love where gone. It was just that easy.

So why can't I just decide that the embryos would be my children? Heck, why not just decide that the eggs are mine too. What a nice thought . . . Belinda currently incubating a bunch of follicles on the cusp of growing my eggs which will lead to our embryos. At transfer, they will be our embryos that I will visualize snuggling in for an eight and a half month stay. So tonight I make that choice. I just wonder how Belinda will feel when she finds out she is walking around with my eggs. I think she would be ok with it.

A bump in the road

I am calling this a temporary set back. I know I will get over it quickly. I thought "talking" about it would help.

Today I was insulted by a fellow infertile. I was called selfish and unwilling to help other infertiles. Since I have taken it as my personal responsibility to do what I can to raise awareness about infertility and to reach out - both on the internet and in real life - to people dealing with infertility, the insults really cut to the core. It was prompted by a misunderstanding - a post I had made that was read in a way I didn't intend. I apologized and attempted to clarify my statement. Then I was insulted.

This is the first time I have been treated so badly by a fellow infertile. It is painful to go to a place where I expect support and understanding, arriving with my guard down, to get a knife in the heart. Perhaps I am naive. I thought that we were friends simply because we shared the road of infertility. I thought I was safe from hurtful comments among those perceived friends.

Live and learn I guess. Fortunately, one of the things I have learned along this path is that I can choose the people I interact with. This is one person I don't need to be around in the future. Thankfully, I have met some really wonderful people since I started exploring the blogosphere.

Thank you Belinda, Leah and Lori and Irish Girl and Sully and Kim and PJ and Meg and Mel and Laura and Geohde and Farah and Jill and so many others!

A bundle of sunshine all weekend long!

That was my promise to Brad last weekend. During all the drama over the billing issue at the clinic, Brad told me that it didn't matter if it got resolved before the weekend or not - even if it was resolved in my favor - because I would find something else IF related to worry about.

I am happy to report that I can let go of IF worries for an entire weekend. I had a few moments where I slipped into old habits, but with Brad's gentle reminders, I quickly got back on track. It was a great weekend!

There is more good news: Belinda had her b/w today (CD3's and all the other stuff for donors) and her physical is Thursday so we should know pretty quickly if we are all set for September.

Brad and I also starting wearing our Infertility Bracelet over the weekend. I made a simple "friendship bracelet" pattern out of the DMC #814 embroidery floss. I missed that phase when I was a kid, but it wasn't too hard. I hope it will be noticed - and I hope to notice it on others.

Arrrrrrrrrrrg! (Updated - again)

After deciding that the billing people at my clinic were not going to ever put me in touch with my RE, I decided to call the front desk and try the more direct approach.

Me: May I speak to Dr. R please?
Receptionist: Dr. R will be out of the office until the 13th.
Me: Head explodes

I thought I might need to get through the weekend without a resolution - now it looks like it will be more than a week. Plus I will be working in the corporate office that week and may not find the privacy to call.

BTW, Anyone near Niagara Falls, NY? That's where I will be the week of August 13th. I would love to meet a fellow infertile.


Updated 13:00: My billing contact just called (who has been very helpful and understanding, I think it has been her manager who has put up the road block) to say they are talking about this issue again and if the answer is "no" then the RE should be calling me back to discuss it. Just as I was letting this one go for the next week I am on pins and needles again. It is reminiscent of being in the middle of a cycle.

Updated 14:40: The billing lady called to tell me that, although they still believe it was a misunderstanding on our part, they are going to give me the "x3" for a donor cycle. YEAH!!!!

They charged me the difference in price ($500 -still giving me a net savings for this cycle of $1500). I would have felt a bit more satisfied had the RE remembered what he promised us (although I acknowledge that both Brad and I could have misunderstood the doctors intention, I am quite convinced that we did not), but it is a kinder gesture on his part if he really believed that he did not offer this in the first place.

The bottom line is I feel much better knowing we can do a second donor egg cycle if needed. We might have an 80% chance of success, but I just can't believe it will be that easy for us. Thanks everyone for your support over the last couple of days.

Enter, stage-left: Grief

Today it struck me how fragile I can still feel sometimes. These days I mostly notice the strength I have gained over the years. I remember a time when I could cry all day or spend hours staring at the ceiling. I remember when I could feel every breath I took and I wondered how I was going to survive the next one.

It has been at least a year, maybe two, since those days when sadness and grief were so overwhelming. Yet, they are far from gone. Today's interaction with my clinic is a big deal - but in the end it is only money and, at worst, could mean we spend less than 20% more than we expected. Not that it won't have a big impact on our finances, but after a certain point, you just go into survival mode. We will cash in more of our retirement or take out a new, larger home equity loan. We will survive, at least financially.

It is this feeling of rejection and grief that has surprised me. Once again the universe has decided that we are not worthy. I feel the weight of the past several years - all the losses and disappoints and that feeling that it is just so damned hard. Why do we need to keep fighting? Why don't things come easily for a change? We fight to make our bodies do what they seem incapable of doing. We fight to find the money to keep trying. We fight to find the emotional strength to keep going. We fight to enjoy life in spite of everything.

And now we are fighting to get what we were promised by our clinic. I know the grief I am feeling today isn't really about this situation - or at least not only about this situation. It is about all the times we had to struggle and keep ourselves going when we wanted to give up, but weren't (and still aren't) ready to not have what we so strongly desire. I don't want to keep fighting, but I know I will.

Don't they understand that it is personal? (Updated)

I know it isn't really personal, but it feels personal.

But let me start at the beginning. My clinic doesn't have a typical shared risk program. What they do offer is what I call the "buy 2 get 1 free" package and what the clinic calls a "x3" package. If you have a baby with the first cycle, then you just spent several thousand dollars more than you would have if you bought just one cycle. If you do need the second cycle, chances are you will have saved a couple thousand dollars. If you need the third, you will save around $10,000. The goal from the clinics perspective is to have it all even out in the end so it neither costs them or makes them money.

To that end, the price varies depending upon the woman's age and the typical cost of the cycle. Someone under 35 only pays $12,000 for up to 3 cycles (drugs and extras like ICSI, AH not included). For someone 38-40 it is $15,000 and for donor eggs it is $15,500 for 3 cycles.

Here is the issue. After our 3rd failed IVF cycle, our RE offered us a "special x3" where we would buy 1 more cycle with my eggs and up to 2 cycles with donor eggs. I remember Brad and I looking at each other and thinking, "Sounds great!" Well, when I tried to pay for this package (thinking the cost would be somewhere between $15,000 and $15,500) I couldn't get the billing people to acknowledge what I was saying. It was like it was such a foreign idea, they couldn't even hear it. "Fine, just charge me for x3 for my eggs." I figured we could work out the details if we needed to move on to DE.

Flash forward to the DE cycle and they want to credit me for the x3 cycle and charge on a per cycle basis. If we get pregnant this cycle it would end up costing us between $1500 and $2000 more than x3 cost. If we needed a third cycle it would be about $10,000 more.

By this time I have talked to at least 2 people several times each and one finally said they would take it to the financial committee and get back to me. I told them that sounded good and if the answer came back less than what I expected to please have the doctor call me.

Well, they said I could use the x3 for my cost only. For those of you unfamiliar with donor eggs, the vast majority of the cost is for the donor! Although I haven't figured the cost at this point, I am sure their plan would cost me more for 2 or 3 cycles. Of course, I asked for the doctor again - after all it is his clinic and it was his suggestion.

Response so far? I will see if the doctor will call you back but I don't think it will make a difference. He is not part of the committee, but he was part of this discussion.

I am sitting here waiting for the call that may not come. I feel personally shunned. I even feel a bit betrayed. I know it isn't personal, but anything remotely associated with TTC can feel personal.

I just hope the RE calls back today. I just can't believe he wouldn't stand behind what he promised. At least, he'd better have one darn good reason why not.

Update: As the afternoon wore on I decided to call and check the status with the billing lady. It turns out my doctor is out today and she will try to have him call tomorrow. She will call me either way. I spent half of my lunch break crying. Why does every little thing seem so hard sometimes? Ug. Well, trying to let it go for now. I will update as I get it.

Views from our Donor

Belinda sent this email the day after our visit to the lawyer. It is reprinted here with her permission.

Hi Kami.

Just thinking of you as I turn in for the night. I hope you had a good day, and get good rest tonight.

I am feeling lonely in my excitement as I have no one to share it with. I suppose this is a good opportunity for me to learn increased independence, though I wasn't looking for one.

Sooo.....I am excited to have a cycle, and about my physical (never thought I would be excited about a pap smear) but I can't wait to find out my antricalfolical count. Still not sure what that is.

It is amazing what an outcast I am. I am an outcast to the world of people trying to conceive, and based on my casual comments to get fertile people's views on egg donation; they are not supportive. Glad I'm not advertising. Interesting, I feel like I'm trying to be so helpful, but I have to hide my fertility at the clinic, and my desire to donate everywhere else.

What I'm trying to say is......thank you for being supportive of me. This would be tough to do with out you.

Sincerely,

Belinda