Wait # 46

Today is a struggle.

First and foremost, it is day 32 of my cycle. It is not that odd for me to have long cycles, 30-34 days, but recently they have been more like your typical 28 day ordeals. I feel hormonal, I feel negative, my breast are tender, and I know that I will start my period at any minute. So, if I know I have every sign/symptom of pending blood flow and I know that multiple highly paid MD's just told us that we cannot get pregnant on our own, then why do these days of waiting for Aunt Flo not get any easier to endure??

For over 3 years I have struggled during the last week of every cycle. I have over-analyzed every bodily ache, minor change in skin pigment, and the slightest bits of nausea, trying to cautiously determine for myself if maybe we were pregnant. In the beginning, there were months when I would drink wine every night of that "last" week, just knowing that soon I would not be able to have a drop! I would plug my cycle dates into the prediction calendars on-line and think over the timeline of when we would be due and when we would announce that we were expecting to all our friends and family. Over time, with all of the countless disappointments, I started to guard myself and I quit planning ahead. Instead, I tried to ignore all the symptoms and just stay busy with other activities. Yet the more time that went by, the harder that week of waiting became. Each month seemed to have this pending doom, a whole week that was clouded by waiting for the inevitable that always came.

So, why did I think it would be easier now? I convinced myself that after our "BIG" doctors appointment I would suddenly be able to cruise through the end of each month without allowing any hope to arise, therefore preventing further disappointment to occur. I mean that makes sense, right? If a doctor says we can't get pregnant on our own, then why would I feel anxious about what day I am going to start my period? Because I should know that no matter when the day comes, that period IS definitely coming. All those questions about the future that were filling my head and all that hope that overflowed in my heart, should have left once we left that doctors appointment.

Yet, somehow the increased knowledge about our situation is not affecting my emotional state in the ways I had hoped. This month I still find myself watching that calendar and counting the days. I still look at when we had sex and start logically determining whether it was "good" timing. I am allowing myself to ponder the "what if" question, like this time it is somehow going to be different. I feel silly for even allowing myself to "go" there, but I can't seem to make it stop.  And now with each extra day on this longer than normal cycle, the feelings of desperation and vulnerability are growing. It's like I am on a plane that I know will crash any minute, but instead of hoping that we will keep flying, I instead just wish we'd go ahead and crash so it would finally be over. At least once my period starts then I can return to some sense of normalcy and I could maybe salvage 3 good weeks out of October.

Then this morning, a new thought crept into my head and it makes me cringe. I wonder if this feeling of anxiety that comes before ever period, will it ever stop? I mean, I wonder if I will ever be able to just go through a cycle without wondering if that might be our miracle cycle where one of the few good swimmers actually finds his way to a ready and waiting egg. Because even though I know the chances are slim, I still have tubes, we do have sperm, and there was no 100% guarantee that somehow someday we might not get pregnant on our own (it's just highly unlikely). So, even though I sometimes love the idea that maybe someday unexpectedly we will get pregnant against all odds. I also shudder at the idea that every cycle for next 20 years will carry the same uncertainty, doubt, and torture that has come with the last 46 cycles.

jenn

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Six weeks and peace remains...

It's been six weeks since my world changed. Since I knew concretely that I would never "just get pregnant". That I would never surprise my husband in some cute way with news of a late period and expected child (yes, I admit that in the first few years of TTC I used to think up cute ways to tell Kevan we were pregnant, ie. clues around the house, baby clothes in his dresser, etc). After our appointment with the Urologist, I knew that for us to ever have a child it would take thousand's of dollars, hours of prayer, and science that I would never completely understand.

For the past six weeks I have been grieving the loss of what I thought our family would look like. I have been coming to grips with what our future may entail, although I admit that we have yet to make any decisions about what path we will take to have children. However, I've decided that the strangest thing about the past six weeks, is that I have almost completely forgotten about the actual doctors appointment. I don't replay the conversations in my head, I don't google for other treatment options, and I don't overanalyze why we couldn't have gotten different news from the MD. Since I returned from Knoxille, I have simply been okay with our inability to conceive naturally and I have been consciously struggling to stay immersed in the peace that God provided me in the aftermath of that appointment.

On that note, let me back up...

The morning after our urology visit, I woke up in a cabin with swollen eyes and a heavy heart. The other house guests were sleeping in, so I got up with my sweet husband who had held me six hours earlier as I cried myself to sleep. It was quiet in the cabin and I could feel the tension between us as we fixed cereal.  Did yesterday really happen? Can our marriage handle this? What do you say to make it better?

So, as Kevan settled into the screened in porch with his coffee and a book, I headed out for a morning walk with our dog. What better companion than the one who can't talk and always seems to understand how I am feeling? We started down the gravel road which runs around the perimeter of the lake. I needed to be alone that morning. The ache in my heart was more significant than anything I had ever felt and the tears were unstoppable. It all felt so overwhelming, like there was no room in my head for any other thoughts, yet I seemed powerless to make sense of the information that was swirling around. I wasn't even reviewing the appointment or the words of the urologist, I was simply grieving. I was ruminating on the idea that we would never get pregnant on our own. That every child would have to be planned, thought out, pros and cons would be weighed, bank accounts would be emptied, and we would have to make a heavy decisions just to "try" to get pregnant. It is just not what I wanted and not what I planned for my marriage, my future, and my children.

But as I walked and cried, I did the only thing I know to do in times of despair...I prayed. I cried out for God to wrap his arms around me, to take away the pain, and bring me peace. I told Him that although I would need His guidance in the future as to how we should proceed, all I wanted today was peace. For the Holy Spirit to wash over me and bring a peace to my heart that would surpass all human understanding. I wept on the banks of the lake while I watched the sun gain height over the water. I took deep breaths and every time I thought I could begin the walk back, I would collapsed in more tears and desperation.

I wish I could say that then, finally, in one bold movement, God spoke to me... but that isn't what happen.

Instead I slowly ran out of tears and slowly the jumbled mess in my brain began to form real thoughts. I was able to see the beauty and magnitude of God's world surrounding me. I felt more comfort in knowing that at least we had options to have children and with choices came hope for the future. I also felt reassured that God's plans are always greater than my plans and when I look back at every trial from my past- I am assured that things happened for great reason, that it couldn't have worked out better, and that God was right all along re: knowing just what I needed. Then I thought about trials in life and all the things I could be facing. I began saying prayers of thanksgiving for our health, our family, and most importantly that God had already been generous enough to give me such an incredible husband. I thanked God that if I had to face a "trial" that would test my marriage and my faith, then at least it was infertility and it was something Kevan and I could tackle together. I mean, God never said life would be easy so if this is my path then God would give me strength to handle it, right? As my eyes began to clear and I retook my path along the lake, I continued to talk to God and He continued to provide peace. My grief did not disappear and I still felt tinges of pain, but the peace in my heart reassured me that it was all manageable...I could survive this.

Since that morning, I have held tightly to God and to His promise that all of this is part of His wondrous plan for my life. I have managed to avoid feeling bitter and instead embrace this chapter in our life and stay faithful that it will be a time of growth and strength in our marriage. I do not pretend that some days I do not feel incredibly sad and frustrated that it cannot be easier for us. That I do not occasionally feel overwhelmed with jealousy for the pregnant girl in the grocery store or I do not loath the constant facebook pregnancy announcements. But I also know that grief comes in waves and occasionally those waves will knock you down and shove salt water up your nose. I am grieving the loss of what I thought my family would look like, but that does not mean that I am not faithful that God's plans for my family will be far greater than mine.

jenn

Then you will experience God's peace, which is far more wonderful than the human mind can understand. His peace will guard your hearts and minds as you live in Jesus Christ." Phillipians 4:7 NLT

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Part II: Answers

Medicine defined is The science of diagnosing, treating, or preventing disease and other damage to the body or mind.


I love medicine. Before, during, and hopefully after our current life situation, I have loved medicine. I love the uncertainty. The problem solving part where you try and figure it out. I love when I have the knowledge to hear signs and symptoms and then know the diagnosis because it fits so perfectly. I love knowing what treatment works best depending on the situation and then applying that knowledge to the way I counsel people.  I love that medicine gives us answers that we need in order to process our feelings and emotions. I love that medicine can give us expectations for the progression of an illness, so that even when we are flying blindly we can at least cling to the statistics and facts. I also love that even when the odds are against us, there is always hope in medicine because it is not exact, those statistics have outliers, and medicine is always evolving.


"Medicine can only cure curable disease, and then not always" Chinese Proverb

Facts to take home from our appointment...

1. The new MD was incredible. He answered all questions, performed all tests that I think the first urologist was missing, and did it all with intelligence, confidence, and compassion. 

2. Hormone concerns from previous lab work seem like a fluke to him and are not an issue to treat. Nor is the varicocele which he could not feel with his "sensitive fingers" and therefore it is not the problem and not worth the surgery. 

3. All ducts and passageways are clear and free flowing. No scar tissue, no swelling, no obstructions, no concerns (I admit that this surprised me to hear, this is what I was betting on). 

#4 is the biggie...the answer I feel like we waited 3 years to hear...

4. Kevan has a calcification in his prostate. Most likely cause was an infection that produced no signs or symptoms. Calcium is a waste product of infection and since the prostate is a giant sponge, the calcium could not be dispelled through the body and therefore hardened at the infection site. The calcification which measures 6x3mm is putting pressure on the seminal vesicle. This pressure is not yet closing off the vesicle entirely, but if more calcification were to occur (ie. another infection) then it might. The pressure on the vesicle effects the volume of semen and the motility of the sperm.

For the visual learners...Imagine all your little swimmers have to pass thru a tunnel, however your tunnel is jagged with sharp edges that bump and injure the swimmers on their way out. It is only expected that after that journey they would have trouble swimming and therefore would be unable to be successful in the remainder of their venture.

The calcification is deep in the prostate, in a difficult to reach location. A TURP procedure (transurethral resection of the prostate) would be difficult due to location and etiology. Since the mass is a calcification, not a tumor or a cyst, it does not have defined edges and would be difficult to cut out.  The MD has done this procedure before and in our case, he thinks the risks might out weigh the benefits. He also is not sure that removing the mass would improve the vesicle and therefore lead to better swimmers.

Deep breath, long pause....He thinks that IVF with ICIS would be our best bet for biological children and he is doubtful that we will ever conceive without these steps.

5. There is nothing we did to cause this problem, nothing we could have done to prevent it, and (my personal favorite) nothing that could have been done differently to correct the calcification had we come to him 3 years ago.

6. There are also no medical indications, concerns, or risks that arise based on having this calcification. The only issue it should ever cause is our continued infertility.


If those aren't answers then I don't know what is...


jenn

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Part I: Feeling the Wait

I have attempted to write this blog for weeks...two weeks to be exact since our 3 hour drive to find a new urologist. It's been hard to put the appointment into words...i am also struggling with how I want to remember the day. I know that may sound silly but I have fluctuated between wanting to record every feeling to sticking simply to the facts. Not sure why the blog-o-sphere has suddenly become the place where I think I am storing my memories of infertility but it feels permanent when I post here. Like someday when I do have a baby this will be my only reference point for how terrible things were because all that pain will fade away when I no longer define myself by infertility. I know that is a stretch but I like to imagine that it will be that easy. Hell, something should be that easy right?

So, Friday the 29th we packed up the car with the dog and cooler to head for a great weekend at my family's lake house on Norris. No work, just a weekend in the sun, on a boat, with a beer...well, right after we stop in Knoxville for that pesky appointment.

The drive was uneventful and I must say that having the dog always keeps the mood feeling lighter. So, we get to Knoxville, drive straight to my aunts house, drop the dog, and leave for UT Medical Center. At this point, we are arriving an hour early (really 1.5 hours early because the MD said to come 30 minutes early anyway). So we sit in the parking garage and start to panic for a little bit. We offer vague reassurances back and forth and then decide to talk it over one more time. I am a big advocate of talking about anything. So, Kev practiced his monologue-synopsis of our timeline and how we got here while I interjected the facts we just couldn't leave out. Then we reviewed the question list and I asked for the fiftieth time if there wasn't something we should add.  Finally, we decided to abandon the parking garage and wait in the office, just for a change in scenery.

Before leaving the car, we held hands and prayed. We prayed that the doctor would provide us with answers that we had been seeking and that God would provide us with peace - no matter what those answers were. Honestly, I had been praying this for weeks. Just prayers for answers and prayers for peace. I know selfishly I wanted to stipulate that God provide easy answers but I all I could muster the courage to ask for were some kind of answers and peace.

After pacing the hallway and returning a few phone calls we entered the waiting room. Kevan filled out a few papers and we sat. I then suggested we play scrabble on our phones since Dr. Phil and old issues of crappy magazines were the only other options. Scrabble was the best distraction I could have imagined. No time for anxiety, no time to fret...instead just refocusing energy of beating each other in calming game.

They finally called Kevan's name and led us down a narrow hallway to a big conference room. There was a large wooden table surrounded with leather chairs on casters. The walls were lined with bookshelves which housed Glenn's guide to Urologic Surgery, pamphlets galore for cialis, vesicare, detrol, and viagra, and last but not least several plastic models of the male urinary/reproductive tract. Our favorite replica was demonstrating how a penis pump implant could work for you!

Our new waiting room felt full of opportunities and I immediately felt comforted that we were going to have a place to sit and talk. I already felt like this time they were going to listen and I was prepared to voice my concerns. I opened my binder in front of me and re-read my question list. Then I re-read the lab work we were providing and tried to control my mind as we waited...

jenn

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Anatomy of Hope

I am not sure what to say or exactly how I feel, but for some reason I just felt like writing it down could help me put it all together. 

 Our appointment with the new urologist is Friday. All week I have felt overcome with emotions. I am hopeful that this new doctor will provide answers and that he will somehow give us a chance at conceiving without IUI or IVF. Then I back up and remind myself that there are rarely easy fixes when it comes to prostate health and I should not get to excited, only to be let down again. I hate how this journey of infertility makes me so guarded when it comes to being hopeful. 

Last week I checked out a book on tape "The Anatomy of Hope; how people prevail in the face of illness". It is written by an oncologist/hematologist and it gives anecdotal accounts of patients who are fighting cancer either with or without hope of recovery/remission. It also gives great insight into Dr. Groopman's strategies for instilling hope in his patients, since he has found hope is crucial for success. 

I love it so far. 

I have been listening in the car during the day and I find myself sitting outside of my appointments for 5 or 10 minutes, trying to get to a stopping point. I love it for the insights it provides me when dealing with my terminally ill patients and I love it for how it relates to our ongoing attempts to prevail through infertility. Today, I stopped with a quote about hope that struck me in my core...

"Hope can arrive only when you can recognize that there are real options and you have genuine choices. Hope can flourish only when you believe that what you do can make a difference. That your actions can bring about a future, different from the present. To have hope then, is to acquire a belief in your ability to have some control over your circumstances. You are no longer entirely at the mercy of forces outside yourself."

I feel taken aback again, just my writing down those words. I constantly feel lost and overwhelmed by those forces outside of myself. I lose hope because I feel like nothing we do has made a difference. Not our attempts to eat healthier, forgo adult beverages, or stay out of hot tubs. Even our scheduling of love making, my hours of research, or the multiple probes and prods that we pay to receive. Nothing I do feels like it will bring about a different future...until now. 

I hesitantly admit that I am hopeful that this step, this venture to find a specialist 3 hours away, could maybe, possibly, hopefully, result in a future different from the present. 

If I am truly honest I want it to result in a baby. 

But as this week drags on, I am realizing that maybe God's plan will not be for this urologist to find a magical way for Kev to get me pregnant. Maybe it will just be the first step of me taking control of our future. The beginning of me realizing that we have genuine choices...choices about what doctor we see, choices about how we more forward from here, just genuine choices. Maybe I can let my guard down and let hope in, not because my hope may not be shaken with every bit of disappointing news we hear, because it will; but maybe I can let hope in so that it will slowly start to grow, as we slowly start to take control of our circumstances. Maybe my hope will shift from strictly having hope that we will have our own child... into hope that the choices we make will lead us to a life with children that complete us. 

Not sure how this will all work out, but if nothing else I am praying that I can let my guard down a little and find a way to let hope flourish.

jenn

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Letting the Cat Out...

So this weekend started out harder than I expected. We attended my parent's church fish fry which is an annual event filled with many people who have know me "since I was 'this' tall". Although this is usually a fun time to run into people we haven't seen in ages, this year it just felt hard. My sister's each brought their daughters, both almost 2 years old and born 3 weeks apart. The girls danced and entertained the crowds and I played with them the way I do every time I get the chance!

~As a side note, I must add that being around these girls has never been that hard for me. I always think that although they may not be my children, they are children that I will know and love for their entire lives. I guess I just have always been able to separate my feelings and value the relationship I have with these kids. I have never wanted my bitterness about my infertility to affect our relationship, because long after infertility I will love and support these children. 

Anyway, I enjoyed playing with the girls but as you can expect the hurtful part of the night came from those who don't mean to be hurtful. First, my second grade teacher walked up and asked if one of the two girls were mine? I laughed and explained our relationship and she moved on. It wasn't pleasant to have to be reminded that we do not have children, however the sting was small.

Then came a bigger blow. I overhear my father talking to a older lady about all of his grandchildren. She asked about the girls and then asked about "my children"? He replied that we had no children yet and the polite woman replied "well she isn't even thirty yet, so she has plenty of time". My father then laughed "I don't care how old she is, they have been married for almost 6 years and we are ready for another grandchild!"

It hit me like a ton of bricks. Just plain hurtful. As if I would not be perfectly happy to give him a grandchild. Like I wouldn't love to have our first child before I turn thirty. But it just hasn't been in God's plans yet. It hasn't been the way our family is supposed to grow....or at least that's what I reassure myself.

The rest of the night was low-key and calm. Actually, the whole weekend was. We both finished the books we had been reading, we went to the pool, and we  played cards at my sister's house. It was a calm was to unwind after many busy weeks of travel and planning for the future.

Then Sunday afternoon, we talked thru the events of Friday night. I acknowledged that I continue to open myself up to hurtful statements by not telling those around me about our struggles ie. maybe if my father knew about our infertility he would be a little more sensitive. We also talked about how Kev's parents are trying to get us to commit to a family vacation in February. We agreed that with Kev applying for new jobs, this is not the time to plan a vacation, however we also discussed how we don't feel comfortable planning a vacation when we have no idea what plans will come out of our MD appointment at the end of the month. Lastly, we talked about how all of these things point us in the direction of needing to tell our families at least the basics of our struggle with infertility. It would hopefully protect me from some of these hurtful comments and it would help Kev's parents understand where our priorities are. It also honestly just feels like the right time.

I think part of why I have never told them is because I justified that I would tell them when we were actually doing something about it. So many doctors had just said "keep trying" and the ones who hadn't were suggesting pretty significant steps ie. IVF with ICIS. I always said that before we moved forward with assisted reproduction that we would tell our families, however it seemed silly to tell them that we couldn't get prego but we weren't doing anything about it but eating healthier and having sex. Well, Kev and I agreed yesterday that even though we don't know what direction we'll go after our appointment with the new urologist, we both realize that this appt with be a turning point of some kind. Either the new MD will find something to treat and hopefully improve my hubby's health or the MD will offer no solutions, in which case we are headed back to the RE to make plans re: trying IUI vs. IVF. No matter what happens, I finally feel like we are moving forward in the process instead of just trudging along from one 2ww to the next.

So, we made plans to tell each set of parents sometime in the next few weeks. Either before or after the urology appointment depending on timing and availability. We plan to tell them as a couple, just for the sake of support. I also plan to tell both of my sisters. I will tell them separately because the dynamics of our relationships are very different plus their histories re: fertility bring different things to the table. I look forward to my sisters knowing even though I know these will be emotionally draining conversations. It just feels like the right time and I think I finally feel ready.

I'll catch up more once we finally let the cat out of the bag, until then say a prayer that people react well to our news! 

jenn

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Obligations...

It's been months since I have written and I hardly know what to say. I just haven't been feeling it. Also, I have a bad habit of hating obligations and sometimes blogging feelings like an obligation. I am not sure who I feel obligated to (especially since I have never told anyone about our blog) but it feels like a "have to" not a "want to".

Anyway, things are the same. We have taken wonderful vacations over the past few months but they are plagued by the fact that Kevan is not happy in his job and we feel guilty taking vacations when money isn't overflowing from our accounts. Still, we have enjoyed the time together and made good efforts to focus on our family...that family being he and I.

Tonight we went to the infertility support group again and it was once again a good place to speak our minds. It evoked new conversations once we got home and it helped us to feel like others were in the same boat. I know that this is a helpful place for us to go together. We are also starting to feel more connected to our peers in the group which is nice. After group I was talking to people who discussed "tweeting" as a good avenue for support. They explained that they "follows" other infertile peeps and it is a great place to express immediate frustrations and gain immediate support. Example being...

Infertile peer's tweet : "new parents enjoying their brand new baby a little too much at the coffee shop today, gonna be a tough day"

response from random follower: "girl, don't you worry, you'll get your baby!"

This exchange makes me want to start a twitter account, separate from my regular twitter, just for infertility. It would be a good place for support and it surely won't feel like an obligation is it's only 140 characters!


Finally, I must add that we have made new plans re: our infertility. I have been reading a lot and found a great book titled "The Male Biological Clock". While reading a chapter I saw signs and symptoms that match what Kevan has been experiencing (in addition to s/s of probable prostatitis and a varicocele) . They are not exact, but close, and they fall under the category of "blocked ejaculatory duct". Although I do not pretend that with one book I can diagnosis my spouse, however it did help me find renewed hope and motivation. So, I have been continuing to do more research which has led me to a MD in Knoxville who is recommended by many urology websites as a great MD for dealing with male factor infertility. My biggest hope and prayer is that he will be a doctor who is interested in treating the problem, not just a doctor who wants to help us have children. So, we have an appointment at the end of the month and maybe after this specialist I will at least feel like our concerns have been heard and addressed.

Till then, maybe look for me on twitter....@emptytummy

jenn

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