This Rollercoaster Ride Sucks

I got the email from the Cade Foundation today.

We were not selected for their grant.

Maybe it would have been better to not even have applied. Because waiting and getting more bad news is really shitty.

I told the nurse yesterday that we only get bad news. She was so optimistic about the FNA map, which was sweet.



But whatever.
I feel tired again. and I didn't even go to work today.

This roller coaster freakin sucks.

It is what it is

I'm sitting in the waiting room while ML is undergoing FNA MAP #2. The SA that we had done this morning showed no sperm. Not such a big surprise, but still a disappointment.

Last time I cried while I waited, but today I feel ....

How do I feel?
I'm not crying.
We've done everything that could possibly be done to try and get this sperm. This is the exhaustion of all our options. We've left no stone unturned. So, at this point, it is what it is.

It is strange to not have my head full of racing swirling thoughts at a moment like this. Instead I feel strangely calm and collected. I might even say that I feel capable of rationally making decisions about what to do next.

We won't get our results from this FNA map for two weeks - by October 15th. The results will give us some percentage of success at finding sperm in an mTESE. One way or another, we will be able to move forward after October 15th. This part of the waiting game will be over. We close this chapter of the book and move on to a new chapter.

ML's doctor, I'll call him Dr. Junk since he gets to play with ML's junk, is a really nice guy. He is the first doctor who we met with who didn't leave me in tears. He has a really nice way of putting us at ease and making us feel like we are in really good hands. He is also really good at giving us information so that we can make the best decisions for us. I really really like him. I would so highly refer anyone facing male factor infertility to him, if even only for a 10 minute phone consultation. In retrospect, one of the things I would have done differently on this journey was to get our consult with Dr. Junk much earlier. He has a blog too, and I'd encourage all my male factor bloggy friends to check it out...

I planned to take the rest of this week off work, as I've learned to plan for the worst with every procedure and every time we get test results. I am also going to block off some time after we get the results. Grieving is really hard work.

Tagged by Julie

Thanks Julie for the 'tag'! haha. I am not very good at all these personal questions but will give it my best shot :)

1. If you could live anywhere in the world, where would it be and why?

I really love my home. I live in the same town where I grew up. I hated it when I was younger and couldn't wait to leave. After being gone for college and then spending a year in a big city after graduation I couldn't wait to get back here. I appreciate it so much more now. I love being next to the ocean. I love the moderate weather. I love the small town community. I love that my family is known here (I am 4th generation). So in all reality I can say that I choose to live here. 

2. If you could have one magical item granted to you, what would the item be and what would it do? 

It would probably be a magic wand that I could use to bring comfort to people who are in pain or suffering. I can't tell you how often I actually refer to my imaginary magic wand as a way to help in a situation where words or actions just don't cut it.

3. If you could have dinner with one person from history, who would it be? (And where would you take them?)

This question is hard. I thought about it all night. My gut response was my grandpa. He died about 5 years ago, and I miss him so much. He was always such a strong paternal figure for our entire family. Sometimes I feel like certain things wouldn't have happened in our family if grandpa was still alive. He should have been at my sisters wedding. and he would have made my dad come too. I have no idea how, but somehow I feel like he would offer me a special kind of comfort during this journey. I don't want to just have dinner with him, i want him to be here with us, sitting in his wicker chair, in the living room of my grandparents old house. gosh, I miss my grandpa.

4. What is your favorite flavor of ice cream?

I love chocolate. But some days I love vanilla. And Cookies and Cream is really good too. But if mint chip is in the freezer then that is my favorite. We eat a lot of ice cream!  We are actually pretty snobby about it and only eat the premium stuff. The was a time when ML would polish off a full pint of haggen daaz every night after dinner. 

5. If you were only allowed to watch 3 movies for the rest of your life, what would they be?

Forrest Gump is an all time favorite of mine. Dirty Dancing and Goonies. Oh how I would LOVE to invite all you bloggy friends over for a Saturday afternoon movie party. 

6. Would you rather be a wizard or a vampire?

Hmmm. I don't think that I'd like being a vampire very much. I like the sunshine a lot, and would never want my existence to depend on sucking the blood of others. Yuk. But I don't know very much about wizards or what it might be like to be a wizard. Maybe I would prefer to be a witch. Witches get to make magic potions, and fly on broomsticks, and stay up all night with their other witch friends. But only for a little while, then I want to come home and be me, cuddled on the couch with ML. 

7. What is your favorite quote, and who said it?

"Let the Beauty we love be what we do. There are a hundred ways to kneel and kiss the ground." it is a Rumi translation by Coleman Barks. I discovered it while on a semester long backpacking trip in college. It spoke to me then and continues to be a guiding force for my life decisions. 

8. If you were offered a job you knew you would hate every second of, but they offered you a million dollars, would you take it?

Well it depends on the contract of course. Are they offering me a million dollar signing bonus? a million dollar a year annual salary? How long do I have to work at said job to get the million dollars? I have always been lucky enough to have the choice to work at a place that I enjoy doing work that I enjoy with people I enjoy. I would be willing to work at a job I hated, for a limited period of time, if it meant that I would have the option of not working for pay for the rest of my life. According to my calculations, one million dollars would pay out about $40k in interest annually, allowing me the flexibility to work where-ever I wanted for the rest of my life.

I did it! All questions are answered! Are you impressed? You should be!

Now I get to ask some questions of my own...

1. What is your favorite holiday and why?

2. How much time do you spend on the phone? on blogger? 

3. What are your favorite TV shows?

4. How did you meet your lover?

5. What is your favorite color of nail polish?

6. What in your life are you most proud of, personally or professionally?

7. Did you have a Batchelorette Party? What did you do?

8. Where do you blog from? (I mean, where is your computer, describe the setting.)

I am tagging everyone who reads this post (and wants to participate) to participate. Just be sure to leave me a comment so that I can come see your answers to this tag. (I am especially hoping that Brandie, Bumpy, Jenni, Augusta, Alison, and StarFish will all participate so I can learn more about you ladies.)

Dear Human Resources,

For the record, my boss is freakin awesome! Really, truly, awesome.

I drafted up this letter, based on the sample that RESOLVE offers, and she sent it off to HR. She is one of the big bosses, so maybe something will actually come of this... The RESOLVE website says 65% of employers who provide infertility coverage said they do so because they were asked by an employee.

Dear Human Resources:

I have been contacted by a Company employee who is suffering with the disease of infertility. An estimated 1 in 8 couples have similar difficulties, so I know that this couple is not alone. On behalf of this couple, and all other Company employees who are silently struggling to overcome infertility, I would like to request that you advise me as to the action necessary to include coverage for infertility treatment with the Company health benefit package. I imagine that this might be a larger issue that requires some attention from Corporate and would appreciate your guidance about who in that organization might be most appropriate to contact.

I have been informed that insurance coverage for diagnosis and treatment of infertility is currently excluded from the Company health insurance plan. I have also been informed that California Insurance Code requires insurers to offer coverage of certain infertility treatments (see reference below), which I assume gives the Company an option about whether or not to include infertility as a covered benefit.

I want to be sure that we are providing comprehensive coverage options that both make sense for our employees as well as our fiscal bottom line. A 2003 Harris Interactive Poll indicates that there is broad public support for infertility coverage; 80% of the general population believes infertility treatment should be covered by insurance. Because of this, I believe that offering this comprehensive health benefit will support our hiring and retention strategies.

Often employers believe that adding an infertility coverage benefit will increase health care costs. However, recent studies indicate that including comprehensive infertility coverage in a health benefit package may actually reduce costs and improve outcomes.

For example, a recent employer survey conducted by the consulting firm William M. Mercer found that 91 percent of respondents offering infertility treatment have not experienced an increase in their medical costs as a result of providing this coverage. In fact, the cost of infertility services as a percent of the total health premiums went down after the 1987 Massachusetts mandate. (Study by Griffin and Panak, Fertility & Sterility, 1998). 

According to the American Society of Reproductive Medicine (ASRM), 85%-90% of infertility cases can be treated with conventional medications. In vitro fertilization accounts for less than 3% of infertility services.

Often patients select treatment based on what is covered in their health benefit plan rather than what is most appropriate treatment. Comprehensive infertility coverage may actually reduce premium expense by as much as $1 per member/per month by allowing employees to choose the most appropriate and effective treatment, rather than more expensive less effective procedures that are covered by insurance.

Medical outcomes are also better for couples whose health insurance includes infertility coverage. The rate of multiple births, which often result in high-risk pregnancies, delivery complications, and extended stays in the NICU, is lower in states that have mandated infertility insurance. Furthermore, the improved mental health and general productivity of employees who are able to access timely and appropriate infertility treatment cannot be underestimated.

I would like to be sure that our Company health insurance plan is as cost effective and comprehensive as possible to meet our staff’s needs as well as our own for a healthy, motivated, productive workforce. Please let me know if you would like any additional information on this issue. I look forward to your reply.


Sincerely,
Foxy's Super Awesome Boss


cc: RESOLVE – The National Infertility Association, 1760 Old Meadow Rd., Suite 500, McLean, VA 22102

Cal. Health & Safety Code § 1374.55 requires health care service plan contracts that cover hospital, medical or surgical expenses on a group basis to offer coverage for the treatment of infertility, except in vitro fertilization. The law requires every plan to communicate the availability of coverage to policyholders. The law defines infertility, treatment for infertility and in vitro fertilization. The law clarifies that religious employers are not required to offer coverage for forms of treatment that are inconsistent with the organization's religious and ethical principles.

Cal. Insurance Code § 10119.6 (1989) requires insurers to offer coverage of infertility treatments, except in vitro fertilization. Infertility, in this case, may be a result of a medical condition or may refer to the inability to carry a pregnancy to term during a one-year or more period of time. Infertility treatment refers to diagnosis, diagnostic tests, medication, surgery and gamete intrafallopian transfer.

Hope Hope Hoping

I am hope hope hoping that the Cade Foundation selected us for their 2011 grants cycle. They will be announcing their awards before the end of September and I am counting the days. I really think that we would be an awesome couple to represent their work, for so many reasons.

I hadn't realized that the month was almost over until this weekend when my mother in law asked about 'the grant'. She was visiting us for the weekend. She is so sweet and well intentioned, but doesn't always deliver her loving comments the way we'd like to hear them. It was the first time she's visited us since our wedding over 6 years ago. I know it meant a lot to ML to have her come up to see us and see our home.

Ohh, Cade Foundation, please make your announcement soon.

Her son was conceived with IVF

I have been so insanely busy. It is great to have the energy again to keep up with the life that I want and enjoy living. But I miss having time to write here, and to keep up with my reading.

****
For the record, I have to say that I absolutely love the klono.pin that my dr. prescribed me a few weeks ago. It magically calms the crazy swirling thoughts that apparently were sucking so much of my energy up. and also, at night, I actually fall asleep instead of laying awake for hours, and I sleep so well and wake up feeling rested. I seriously love this stuff. My dr told me I could take two pills every day (morning and night), but I only take half every other day because I am afraid that I'll get addicted or something. I read some scary stuff on the internet about this medication, but feel like it has given me my life back.

****
There is a lady who I know. I met her some time ago when we were volunteers on a local school district committee. We were like-minded in our approach to solving the problems facing our committee, and spent many evenings in the parking lot talking after the meetings. She was older than me, and had a child in the schools. We were in very different places in our lives, but there was always a connection. The committee ended and we went out separate ways, crossing paths every so often. She eventually ran for the school Board, while I ended up serving on another district committee that advises the Board.

The District has been in desperate need of funding and finally put up a school bond measure for the November election. I was asked to be a signatory on the ballot statement in support of the bond, along with a few other very prominent community members. I am not sure what makes me qualified to be at the same status of these other folks - former mayors and local philanthropists - true community leaders. But they asked me, and I said I'd be honored.

In the last week, I've ended up working incredibly closely with this Board member, nearly every minute that I am not at work, to campaign for the passage of this school bond. She really is awesome. And then, on Thursday, as we walked to our cars after a late meeting, I shared that it had been a really difficult year for ML and I.

I broke the silence and said "we found out last summer that we can't have kids."
and she said her son was conceived with ivf.
she understood. she really understood.
and I realized that she also lived with the silence.

I can't stop thinking about how glad I am that I said something to her. Why would she have ever brought infertility up to me?

I want to hug her and tell her that our exchange means the world to me. Instead I wrote her a card today - it just said that I think she is awesome and am so grateful that we are friends.

It seems that I am going to be sucked into this campaign. I keep telling people this bond will benefit my someday kids. The more I refer to them, the more real they become, my Someday Kids, My Someday Twins. The need for this Bond is so great. And my need to be distracted is pretty big right now too. ML has his FNA Biopsy next Wednesday. We'll get results back by October 15th. That will be a tough two week wait for me, and I have every expectation that I'll fall apart when we get the results. So having something else, something bigger than me, to focus on might be a really great plan.

My Puppies. 

*****
Much love to everyone visiting from ICLW. I promise to come visit your site in the next few weeks, and make up for all my missing comments during ICLW. Your comments pop up on my phone throughout the day and make me happier than any words can express. One more picture of my puppy's for your viewing pleasure.  Love to all!

My Weekend with the Girls

A few weekends ago I went on a girls getaway trip. I wrote about the anticipation of it in one of my first posts.  I wrote this right after the trip, but apparently forgot to publish it! 

It was a great trip, but I couldn’t help but feel like I was going thru the motions. 

My Bestie brought her Little One (who I’m going to call LO). Her little one is A.DOR.ABLE. Seriously the cutest sweetest little thing ever. and she loves me. really! We giggled together and cuddled and played all weekend. I told Bestie that she should not pack the stroller so that I could hold the little one instead. and I did, and it was wonderful. 

Bestie knows everything. and she is so sweet and supportive. and of anyone else who knows, I feel like she understands best. She has had her own struggles, struggles that I will never comprehend, and for better or worse she has that pain to draw from. 

Another friend met us, and brought her little girl. She just found out that she is pregnant again. I can’t say that I have much in common with this lady. She is nice, but not someone who I’d want to get into it with. She has a general idea that we’ve encountered struggles, but doesn’t know much more than that. All weekend she kept making comments about movie stars or other ‘single older women’ who use artificial insemination to get pregnant. I’ve never thought to by offended by that term, but omg I hate it. I hate the way she said it, the way she judged. It made me feel so sick. I wanted to scream at her ‘shut the F up and don’t talk about things you know nothing about’. 

I also hated the way that she challenged Bestie’s parenting style. Bestie is the most wonderful loving mother, attentive to the needs of her precious babe. I love watching Bestie be a mother and have so much respect that she stands her ground in the face of others who challenge her mothering. I may not personally agree with the parenting choices of this lady, but I sure as hell down’t put her down for making those choices or challenge her reasons for raising her daughter the way she is. grrr. 

Bestie’s sister who is also a good friend came too. She is a sweetheart, married to the. nicest. guy. I’m not sure what her plans are for starting a family, other than a desire to have their finances secured a little. Besties sister is super creative. She helped me make my first quilt a few months back and always inspires  my creative side. Her ipod was full of music that made me feel so happy, and I came home with a list of artists that I want to download into my music library. (Lauren Hill - remember her? totally takes me back to a very specific semester of college; Jack Johnson - I’d kindof forgotten about him, but have heard his songs pop up here and there a lot recently; Matchbox 20 - yep I loved their cd and their music reminds me so clearly of being on my college campus.)

I do really love girls weekends - getting away from the day to day distractions of life; having the time to have substantive conversations with good friends; remembering how much I love ML and my home. I couldn’t help but thinking that it would be amazing to have a getaway weekend with all of you. I start planning it out in my head, but then realize that none of us have the extra spending money to make something like that actually happen. I do think it would be the most amazing experience to spend a few days with a group of us who have this shared experience. Vegas is a pretty central place with cheap flights and cheap hotel options. If anyone is interested, let me know, and I would so love to plan an infertile weekend retreat. :)

Gold Star for the CDC

The CDC is paying attention.  :)


Today the Centers for Disease Control and Prevention (CDC) along with the Male Reproductive Health Alliance is hosting a stakeholder meeting entitled, Advancing Men’s Reproductive Health in the United States: Current Status and Future Directions in Atlanta, GA. The meeting will highlight multi-disciplinary approaches to improve men's reproductive health outcomes through public health activities. The meeting’s agenda includes presentations and discussions by stakeholders regarding strategies used to address male reproductive health problems. Participants will represent government agencies, national organizations serving health professionals or consumers, as well as academic programs involved in promoting men’s reproductive health.


I also wanted to make sure that you all saw the new CDC webpage about Infertility. I posted a while back about the email exchange I had with the CDC asking them to revise their website to include reference to Male Factor Infertility, and THEY LISTENED! The new site provide a much more balanced picture, and hopefully will help raise awareness about the importance of male reproductive issues as well.


UPDATE:
Check out Dr. Turek's post about speaking at the CDC conference. Gold stars for Dr.T too!

post secret Sunday

I adore ML. I never could have imagined finding such a wonderful soul to share my life with. I am thankful every single day that he is my partner.

One of the most heartwarming things about reading all of these blogs is seeing just how much love and passion we all have for our spouses. I smiled when I found this post secret card this morning, loving the fact there there is so much love in this world.

PS: Thank you Julie for sharing your favorite websites in a post a while back. Post Secrets was a great new find for me!

IUI questions

I am thinking a lot about what comes next. Regardless of what it is, having a plan that I can follow makes the whole process so much smoother. There is of course the risk that the plans I make will get changed at the last minute, which seems to occur at nearly every junction. Yet, in the meantime, my anxiety is much more manageable when I can see our potential options laid out ahead of us.

Barring a miracle with this FNA MAP (which we scheduled for September 29th) we will be proceeding with donor sperm. I want to start working through some of the choices that I'll be faced with. Ultimately, I am trying to balance the emotional, physical, and financial components.  I am hoping that some of you who have been here/done that can offer your advice.

How do I choose a RE for dIUI?
There is one local RE who has a very small boutique practice. He is fairly new and only had one year worth of IVF results reported. (He'd only had 4 IVF patients and only one was successful.) It would be so much easier to have a local Dr, but I have a general distrust of our rural medical practitioners and worry about a 'one man shop' being the right fit for me. I would not do IVF with this Dr for those reasons. PROS: local, personal, less time off work, ML could be with me at all appts,  CONS: one man shop, I'd only do IUI with him

There is the big university hospital RE program in the City. I had an initial consult and ultrasound with the head of their program, they did my saline sonogram, and their geneticist reviewed our records too. It is a 3 hour drive each way to get to the City, which requires a day off of work. I trust their medical judgement and like the fact that although I'll have a primary RE, there is a team approach to every case. PROS: reputation, trust, team, consistent care if we move to ivf, CONS: travel, time off work, ML couldn't be there at every appt.

The other option would be to find a different RE in a nearby city. I might be able to cut an hour off the drive while still benefiting from the larger practice.

What questions should I ask the RE?
How much experience do you have with IUI? dIUI?
What can we expect as a IUI success rate with your office?
Do you have a preference for medicated vs unmedicated cycles?
What hours are you available? Evenings? Weekends? Holidays? Emergencies?
What lab do you use?
Where did you train/residency? Where did you work before?
What are the costs associated with dIUI? (actual procedure, monitoring, sperm prep, other?)
At what point would you recommend we switch to IVF?
What records / tests will you need from me? Do I need to repeat anything?
How quickly could we start a cycle?

How to choose sperm?
Oh My, this is a loaded question that deserves its own post.... but here goes.
Which sperm bank to use?
How do we narrow our choices and make a selection?
Are there cost differences between the banks and donors?
Which bank will give us the most information about the donor?
How do ML and I do this together? Will ML do this on his own?
Things that are important to me:
Open donor, not a CF carrier (full screening?),

What do we tell people?
Who do we tell?
What exactly do we say?
How much privacy do we maintain for the child to choose to disclose?
What kinds of reactions should we expect and how to best respond?

I think that this is a good start at organizing my questions. I am going to keep this post active and add to it as I think of other questions or topic areas. I really would love your wisdom and experience about all of this - comments, links to other posts that explore these questions, any resources that you know about!

Three cheers for the ALI community. Thank you for being here.