Balancing Act

I had lunch with my mom last week. She is the awesomest mom a girl could ask for.

She brought me some info about all of the recommended pre-natals that I need to start taking. She encouraged me to get up to date on my flu and whooping couch vaccinations. She offered to research chewable pre-natals for me, since the swallow pre-natals are gross. (I was hoping that my dinosaur chewables would suffice, but mama knows best.) *** if you can recommend any good chewable pre-natals, please let me know!!!

My brave mama also asked me about how the IUI process works thinking that maybe we could take back some control of the process, de-medicalize it, and do it at home. Wouldn't that be awesome? If all other factors were equal at this point, I would really love to conceive in love with ML in the privacy and comfort of our own home.

I am really glad that I could go thru all that with my mom, so that she can understand what options we have and the factors that we are using to make decisions. 

The thing is that all other factors are not equal at this point. The way I see it we are balancing three big factors - physical, emotional, and financial - and will be choosing from essentially three different treatment options - non-medicated IUI, aggressive medicated IUI, or IVF.

Physically
From what we know, I can get pregnant. I have regular cycles and ovulate regularly. I've never taken hormonal birth control and would rather not mess with things unless necessary.
treatment choice = non-medicated iui

Emotionally
I am a mess. I want to be pregnant now. I am done waiting. The sooner I am pregnant the sooner I can move beyond the despair of this journey. The thought of prolonging treatment cycles any longer than absolutely necessary sounds completely unacceptable to me.
treatment choice = IVF

Financially
We've already spent about 20% of our income on fertility testing & treatment this past year. We have some savings, but it is limited and it makes me sick to think about spending it all. But I know we will if we have to. We'd like to be cost effective in our decisions. At quick blush were looking at a cost of $1,200 per cycle for un-medicted iui (with a 10% chance at success), $3,000 for medicated iui (with a 20% chance of success), or $15,000 for IVF (with a 50% chance of success).
treatment choice = I don't know how to do that kind of statistics, but I think it would be medicated iui.

So that leaves us... I'm not sure where exactly, but I think in the middle with an aggressive medicated iui as our starting place.

We meet the new RE on Wednesday, so we'll get better info then. (and my cycle starts on Thursday, so cross your fingers that we can jump right in! ohhhh am I hoping.)

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.

No Miracle for Us

The doctor finally called with the results of Fridays SA.

No sperm.

Pretty much what I knew deep down to expect. I toyed with other expectations, but can't say that I actually believed that we would get any other news. As I told ML, we only get bad news.

So, thats that. We'll continue with the $1,600 /month FSH injections for another two months, then do another SA, then another $3,700 FNA MAP biopsy. Same plan as before.

I'd been expecting to get our SA results on Friday, but the nurse informed us it usually took 24 hours for the lab to get back with results. She promised to call us as soon as she had the info, most likely on Monday. I asked that they email us instead of calling if it was Monday before the results came. (I didn't want to be waiting by the phone all day.) We didn't hear from her on Friday by the close of business, so I figured first thing Monday we'd be getting a call and/or email. We got neither before ML and I left for work. I texted ML at noon to see if there was any news. I called him at 1:30 and asked him to call the office. He spoke with the nurse who said that she had the results, but didn't want to say anything about them and would have the Dr call us at 3:45pm.

This is what I wrote while I waited for 2 hours until we heard from the Doctor. (disclaimer: I really do LOVE this doctor and his nurse and his office. I just had to release my anxiety into words, and in this post he unfortunately gets the brunt of my pain.)

You can help. You can help minimize my anxiety and the trauma of this experience by setting clear expectations for me. The process of waiting for test results is so often more stressful than the actual test itself. Please be clear about when the results will be ready and how you will share them with me. Please do not ever again hold MY test results so that YOU can call me at your convenience to tell me about them. That is a really mean kind of torture. That is why I hate you right now. and why I hate having to deal with doctors. I promise you that my imagination is far worse than anything you could ever tell me. Your nurse could have told us what the results were, emailed us a copy of the labs, and then had you call us to discuss it later. You really don't have a clue about how hard this is for us. for me. this waiting is the worst kind of hell. 


So, either there is no sperm and we keep doing what we're doing... or there is sperm and we start freezing it for ivf. You told us before that those were the options. Is there some other option that you're going to spring on us now? please don't. Are there sperm, but there is something wrong with them? Are there a gazillion sperm and we can get pregnant naturally and you just wanted to be the on to tell us? F. You, because the stress hormones that you've flooded my body with will sure as hell interfere with that plan.


Your nurse said that she would call as soon as she go the results. But then we had to call her and she is making us wait to talk to you. damn it. 


I am trying so hard to just be present right here and now. Its not like my knowing at this moment will change anything. It won't. So I try to breath and focus on this first day back to work. But I just cancelled a meeting so that I can be by the phone for your call. F. You. It is hard to breath when that anxiety band around my chest feels so freakin tight. 


I may be a little neurotic about this, but I know what I am not alone. I know that all of my IF sisters will say the same thing as I am right now. It is a huge comfort for me to know that, and should be a huge lesson for you - one that you and your nurse need to learn and remember. In all other regards, you've been awesome, and I really do love you. I just wish that you cold know how hard this is for me to wait right now and that there are a few things you could have done to prevent this unnecessary anxiety. 

For what its worth I did tell him when we spoke that i wished his nurse could have given us this info when ML spoke to her hours ago and that it was really hard to wait. He apologized and said that he always gives critical information personally, and that she shouldn't have told us that she would call. For what its worth I think he might have picked up on the stress in my voice and will be more careful about the expectations that he sets with his patients from here on out.

One Day at a Time

ML fell, or maybe he jumped, off the wagon last Saturday night. He quit drinking in January of 2001. Its been almost 10 years. I freaked out. Lost it. I had no idea how scary it would be for me to see him drink again. I guess I always figured he would someday, but I wasn’t prepared for it. 

When I met him, he drank a lot. A lot. We had a TON of fun, don’t get me wrong, but it wasn’t what I wanted for my life partner. We dated for almost a year before I decided to move on. I remember telling him that he might consider the effects that drinking was having on his life, but I never predicated our relationship on status of his sobriety. 

We stayed in close touch. Even after I had graduated, moved away, and gotten a ‘real’ job. There was a point when something changed. Over the phone in a matter of a few weeks I felt like I had grown closer to him than I had in the year that I’d known him. It was like there was a depth that suddenly appeared. It probably wasn’t the best description but it was all that I could come up with at the time - I explained to him that there was an extra layer of pie, a layer that I never knew was missing, but that was so delicious and wonderful and made the pie complete.

He’d gotten a d.ui that January after I’d left and decided that it was time to make a change. I’ve been grateful every day since then that he made that choice that allowed our relationship to grow into the beautiful thing that it is today. 

So, on Saturday night, after Mr. T poured ML a gin and tonic, I started to panic. 

We’d decided, well I should clarify that I decided and asked him to agree, that we would be sober this weekend. Don’t judge us, but there are certain occasions where ML and our friends partake in recreational, err, uhh, party favors. And with all of our investment in ML’s sperm, I didn’t want to jeopardize anything. I’ve never felt the need to partake so it wasn’t an issue for me, but I agreed to not drink all weekend so that he wasn’t the only sober one. 

It sucks that this time when we probably need to let lose and relax more than ever is the one time when we can’t. I felt awful asking him to refrain, but he would tell you that he is in full agreement.

He’d mentioned that he was thinking about having a cocktail earlier in the evening. It was the first time that I’d ever heard him talk about being tempted. He said that he felt disconnected from everyone and left out. He wasn’t having a good time. I didn’t know what to say. I mean it is his choice to make. I tried to say that it was a really big decision, one probably best made when not under temptation. I honestly didn’t think he was serious. I believed that he was tempted, I just didn’t believe that he would make the choice to have a drink. 

On our way back to camp after the show we passed by a local band playing a rocking bluegrass version of gin and juice. Maybe that was the sign that he needed to make the choice he did. 

So I freaked out. Totally surprised by my panic I climbed into my tent and the tears started. ML was clearly having a great time. He was happier than I’ve seen him in a long time. Smiling and talking and almost skipping around camp. I felt like a jerk climbing out of my tent and asking him to come to bed with me. He chose me and came to bed. I cried and blubbered about how scared I was and how I needed to know what ‘his plan’ was and what ‘this’ meant. He was so kind and sweet and listened and reassured me. 

The next morning we talked a little. I was calmer. It is what it is. Today is different than it was 10 years ago. We’ll take this one step at a time. 

My dad chose his alcoholism over me. It is a choice, and I would simply die if ML ever chose alcohol over me. I couldn’t take that. That is my fear. I know that he loves me, and would never want to make that choice, but my dad did, and I can’t deny that it doesn’t scare me that ML could do the same thing. 

Its not all bad. On Sunday night we both had a few drinks and talked. We talked about stuff that we really needed to talk about. He told me that he is totally on board with our family. With whatever we have to do to build our family. He assured me that I will be pregnant and that he can’t wait and that it isn’t about him or sperm, but about US. 

I told him that I’d been so unhappy for so long, that I had to grieve. That my unhappiness wasn’t about him, that my grief was real and necessary. That I too grieved over the loss of his sperm. It was SO wonderful to talk to ML about all of these things that we needed to talk about. I told him that it meant so much for me to hear him say these things, that I needed to know how he felt, and that I needed to know that he wanted this as much as I do. It was a conversation that caused tears, of happiness. 

We laughed and talked with our friends and stayed up until the party people dispersed and finally found our way into bed for the night. I love him so much and I don’t doubt for a moment that he doesn’t feel the same for me. This journey is about US and we WILL make it through it. 

I don’t know where this (the choice to drink) leaves us or where this will take us, or what it means for tomorrow. All I know is that it is happening one day at a time and all I can do is handle it the best I can one day at a time.

Logic Prevails?

So much to write about, and so little time.

Our SA is next week. I talked to my therapist about it, because I want to make sure that I am prepared to receive and handle the results. She suggested that we have the Doc email the results rather than call, so that ML and I can read them on our own time, as opposed to getting a call while we are in the car (for 12 hours with two other people). We kind of walked thru my reaction if they are negative, which I had kind of been focused on. Then we talked about my reaction if there is sperm. Ironic as it sounds, I have a lot more anxiety about that. There are a whole series of actions that get kicked into high gear if this SA finds sperm. And I would want to start them all immediately, which isn't really feasible for 10 days while we are on vacation. So instead I will just obsess about it during our vacation, and since we'll be camping I will be without any access to the internet or reliable phone service to start planning.

Awesome therapist also suggested that I check in with ML about all of this. To see what he is thinking and feeling about everything, and to let him know what I am thinking and feeling. (Duhhh. She often has the most common sense suggestions, that I somehow fail to see clearly on my own.)  Although I think about this stuff a lot, ML prefers not to think about it and has some magical ability to turn off that part of his brain. (Can you sense my jealousy!) I know that he doesn't like to think or talk about it, so I try to be thoughtful about how often I bring it up. So we hadn't really talked about this...

...Until I brought it up the other night. He clearly hadn't been thinking much about it and started to panic a little when I started to talk about having the Doc email the results so that we wouldn't get them in the car with his friends. He looked at me like I might be totally crazy when I said that if the SA shows sperm that I fully expected us to find a sperm bank on our trip so that he could make deposits during our vacation. He was panicked because he is worried about me. and my reaction. and about these results 'breaking me', like the last results did. He wants to wait until we get home to get the SA. I cried.

I tried to explain that I will be fine, That I just need to talk thru the negative/positive reactions now and that I will be fine when we are in the car for 12 hours with other people and unable to talk about any of this. I am so much stronger now. I have so many support tools in place now. I can handle this. I've been planning on this SA being next Wednesday for months. I can handle anything, I just can't handle changing the plan.

He thinks that this will ruin our vacation.

I took a zanax, finished crying, and went to sleep. He couldn't sleep, woke up at 4am and watched the Tou.r de F.rance for 4 hours. He is concerned about me. and probably feels a little like he has no control over these plans that I am so focused on.

I couldn't see it that night, but he might be right. It might be easier/better to reschedule the SA for after we return. I suppose I should talk to him about this again. These are not my choices to make alone. and I trust that he knows me better than I know myself when it comes to things like this. and it really isn't fair that my out of control emotions should ruin our vacation. We are in this together.

SA Next Week

Oh my gosh, I think I might have actually blushed when I saw that someone had submitted our upcoming SA to LFCA. Thank you for such a kind and thoughtful gift. Really, I wish I could give you, whoever you are, a great big hug.

So, yeah, SA is scheduled for next Wednesday. One week from today. It's been taking up more and more space in my brain, but I can't quite figure out what I think or feel. The only thing I know is that I want to line up all of my support systems so that I can experience any disappointment, but then bounce back. I don't want to crash into the bottomless pit of sadness and despair that caught up with me last time we got bad news. I can't do that again.

In some part of my brain I don't expect that we'll ever get good news. ever.

And in another part of my brain I am so hopeful that I 'joked' about a miracle for me last month.

The doc gave us a 50/50 chance that this FSH therapy could, in theory, result in sperm production. He explained that even if it was successful, there probably wouldn't be enough sperm to spill into the ejaculate and would still require surgical extraction and ISCI.  But the thing is, this is an experimental treatment. Its not like the doc has seen/heard of more than a couple cases like this in his entire career. So really, anything is possible, but it is not a proven treatment, so it is more likely than not that this SA will be negative.

And if it is, I want to grieve, then move on.

So, to make it all a little more complicated, or possibly a blessing in disguise, we are leaving for 10 days of vacation immediately following the deposit next Wednesday. We'll be departing on a 12 hour road trip  with my lover's best friend and a hitch-hiker acquaintance. So we'll get a call with the results while sitting in a car with two, for the purposes of this kind of news, strangers. I'll probably cry, and they won't know why. But they are boys and probably won't ask.

I'll bring my xana.x and have it handy in case my emotions start to get the better of me. and I'll have my love, right there with me (way better than drugs!). I'll paint my nails, which for some reason makes me feel good. and I'll have my laptop, so I can write. Writing has been the most incredible therapy. It is an outlet for the pain, a place to put it where I know it will be safe and where I can deal with it in smaller chunks. I'm meeting with my most awesome therapist tomorrow and I'm sure we'll come up with a few more tools to pack in my little resiliency toolkit.

So, yeah, I've not wanted to think about this, and have put off writing about it. Apparently I needed the LFCA push :) Regardless of the results next Wednesday, I feel your support and love. and it really means a lot to me.

Journals from the Past

I reflected last week on the year anniversary of our first Semen Analysis and the devastating diagnosis we received. I've come a long way since then. At our Resolve meeting last night, yep I went again and it was awesome again, I was surprised by how confident and relaxed I felt. Today as I clean out some old files on my laptop, I opened an old journal to find some entries from last year, right after our first UR appointment. It's pretty powerful to read, and again a reminder of how far I've come on this journey. I wanted so much to share this with someone last year, but I wasn't ready to be so open. This seems like an appropriate place and time to share. Here goes....

I read everyday, but haven't been able to write. I want to contribute to the discussion, but I am struggling with balancing the need to connect with others who understand this experience and a strong desire for privacy. Even with screen names, the internet feels so public. 

We had our first consult with a reproductive urologist. I felt like an idiot, barely able to communicate, and definitely not strong for my husband. I had written out a list of questions in advance and actually handed the list to the Dr. My husband was great - following the discussion and asking relevant questions. I just sat there with tears running down my face. I'd prepared a letter to the Doctor and his staff to have put in our file, introducing my husband and I, reminding him that every interaction with him or his staff was highly emotional and stressful for us, asking for help in understanding the financial cost of any options that were presented to us, etc... and it had our picture on it. At the very end of the consult I handed the Dr the letter and it was like a lightbulb came on. He brought the patient coordinator nurse into the room to meet us, gave us the card for the financial counselor, and encouraged us to make an appt with the office counselor. The doctor was great before the letter, but after reading it remembered the humanity of us as a couple who were scared and in pain.
We are now waiting for results of hormones and genetic testing. I am putting all of my thoughts into hoping that the results show that we are lucky enough to move forward with a TESE, and trying to brace myself if that is not an option.
Speaking of bracing myself, I got a massage last week and realized that I was actually physically bracing myself for some sort of impact. As I started to relax, I started crying. I want to be strong for my husband. I need to hold it together at work. I honestly don't want to talk about any of this. But it is constantly swirling in my head. I am constantly in a state of apprehension. I am constantly on the verge of tears. I didn't realize how much I needed to be cared for. and how important it is going to be for me to figure out some ways to take care of myself - to create safe places where I can let my guard down. 

The physical exhaustion I've felt since getting the first SA results should have been a clue as to how much energy I am exerting to hold it together. Being at home with my husband is easiest. Being at work is okay if I can be focused on a specific task. I told my boss and direct co-worker that we had “some medical stuff going on... I felt like a zombie... I didn't want to talk about it.” They've been pretty respectful, but I know that they could ask about it at any time, and I hate that. With my irratinal emotional breakdowns and random days off for doctor appointments, I had to let them know that sometime was up and that it had nothing to do with them. Being around my one friend and two family member who know is okay. They want to be supportive, but I know that they can't understand. At least with them I know that I don't have to lie or pretend that everything is okay. Being around  friends and family who don't know is exhausting. I swear that talk of getting pregnant or babies comes up in every conversation. When we were trying, I had no problem lying and telling people that we were going to wait until I got better insurance, or until my husband got a better job, or that we just weren't ready yet. We'd wanted our trying to be private between us, as it is in fact among the most intimate and private activities that a couple ever engages in. Apparently I was so good at these fibs, when I recently told my best friend that we were having some problems, she was shocked. Ironically she was happy that her 22-week pre-nate wouldn't have to wait another 5 years for a friend, while I was considering for the first time in my life that I might never have a family. For whatever reason, when the topic comes up now I feel completely exposed and raw. and unequipped to participate in the discussion.  It takes everything I have to hold myself together so as not to let on that I want to run and hide and disappear.  We are married couples in our early 30's, so it really isn't an inappropriate subject. It's just that everything about it all of a sudden, to me, feels so invasive and out of control and, inappropriate.  I now brace myself for this part of the conversation everytime we hang out with friends. And it takes ….so.... much …. energy. 

Someone said that the first days and weeks after getting a zero SA are the worst, but it does get better. Thank you for that wisdom and encouragement. I think that I cried more in those first two weeks than I have in the past five years. For some reason driving was especially hard. Maybe the car is a private,  space where I was safe to let my guard down. I drive to meetings everyday at work, and I must have cried almost everytime I got in the car. Crying is exhausting work. I may have been physically present at these meetings, but I assure you that I was not mentally present. I was exhausted. And I couldn't eat. I've always had a hard time eating when I am under stress. It is so hard to swallow. To swallow the food, and to swallow the truth and reality of everything else that is hitting me. Besides, my stomach was in knots. Food really was not appealing. Breathing was hard too. It was as if I had to remember to breath. And as if the sobbing had hurt my diaphram, causing it to seize up everytime I exhaled. As I write this I realize that this has passed and that I can breath normally again. Reminds me of the saying, this too shall pass. 

This week has been much better. I had a full day without tears. I worked past 5 a few nights and didn't feel as thought I would pass out from exhaustion driving home. Looking back I think it started last Sunday at breakfast where I was able to eat a full meal. It is crazy to me how severely the stress of this diagnosis has physically affected me. It is unreal. 

Miracle for me?

Sperm takes about three months to produce. ML has been on the FSH therapy for nearly 3 months now. The UR gave us a 50% chance of the FSH resulting in enough sperm for ISCI. I don't think that the FSH is actually going to work, but at the same time I have a secret hope that it will work so well that it will completely restore his sperm production and I'll have a surprise pregnancy. Its not likely, but it's what I want. The UR said that our case of late stage maturation arrest is so rare that he has only seen a few in his entire career. So really, the UR doesn't know what's going to happen. He can tell us that there is a 50% chance of the FSH working, He can tell us that even if it does work there will probably not be enough sperm to spill into the ejaculate, He can tell us that its going to be sunny on September 17th. He doesn't know.

I started my cycle today. Following the shortest cycle ever at 24 days. I am a very consistent 28 day cycle with ovulation on days 13-15.

Once before we were really trying, but after we'd quit really preventing, I had a 35 day cycle. I would have sworn that I had a chemical pg that month, until we got the azoos diagnosis, that is. I actually took a pg test after my period started. We jumped in the shower, I took the test and set it outside of the shower so that we could get the results together. That was my first pg test.

You always hear about women who swear that they had their period while they were pregnant. I admit that I watch all those TLV shows, and i just didn't / don't believe that my period is a sure sign that there is nothing else going on up in my belly. Azoos, on the other hand, is pretty definite in my mind. Since the Azoos diagnosis I have no doubt that there is nothing going on up in my belly.

So anyways. I started early today. and I have a secret hope that the FSH is going to work wonders. So maybe, just maybe, this is not my cycle, but instead its one of those pretend cycles that pg girls get. Maybe, just maybe, there could maybe be something going on up in my belly.  You think?

I don't believe it enough to do anything about it, like take a pg test or anything. But I do like thought, and I do like the hope.