Monday, November 28, 2016

An Update from the Newells

Well.  We finished our first cycle of hormone therapy. It didn't work, but I was okay with it. I kinda figured it wouldn't, in fact, I expected it wouldn't work. So while I was sad, I wasn't completely devastated.

I completed the Art Therapy study for women who have infertility. It was so amazing. Before being accepted into the study we had to take a "test." Essentially, you had to score within a specific range to qualify, if you scored too high then you were too sad, too low and you were too happy. At the end of the study I took the same test. I was stunned by the difference. The first time I took the assessment, I was one point away from being referred to outpatient therapy; when I took it at the end I was five points away from being too happy. When I got home I asked Trey if I was really that bad off, because in my head I wasn't, and he said he was actually worried about me and that I was really sad and upset.

We went down to Chapel Hill for UNC's homecoming and spent the weekend with my family. It was really nice to get away, and what was SUPER nice was that I didn't have to give myself a shot the whole weekend!!! Of course two days later I was sick, and I mean sick. I'm still having residual cough and congestion nearly a month later. Be glad you did not get this plague.

OH. Forgot one really important and scary thing.

About halfway through my injections I started bleeding, more than what is okay. My doctor was out of town so I had to annoy his partner who was covering his patients that week.  I ended up having to take a pregnancy test to confirm it it was early pregnancy loss.  I have never, ever hoped for a negative test. And thankfully, it was negative.

That's one of the scary things about going through fertility treatments. Even if you do become pregnant, you're so terrified of losing it that you can't even enjoy the early months of pregnancy. Anyway, I was fine, so we continued with the cycle.

A couple of weeks ago we had a very dear friend hold a fundraiser for us. I am so grateful for everything who has been supporting us and who participated in the fundraiser. We were absolutely blown away!!

So then that brings us up to the last week. Found out the hormone cycle failed. We decided to do one more cycle of just hormones. Hopefully, this time will work. It's somewhat encouraging, because I AM ovulating, which is the problem, but we just aren't getting pregnant. Trey and I talked it over and we made one very big decision. If this hormone cycle fails then we will move on to IVF. Right now with the hormones our chances of getting pregnant are the same as any "normal" woman, about 20% each month. We decided to skip IUI because it doesn't raise our chances that much and we'd rather put our time and money towards IVF. Our chances of becoming pregnant with IVF are 50%! So, that's what we will do, if we don't have any luck with one final hormone cycle.

Right now I'm trying to get into the holiday spirit. Trey's work adopted some Angel Tree children and we went to shop for clothes for them. It made me happy that we could help out, but so sad at the same time. It has to be one of the worst feelings, to have children and to love them, but to not be able to give them a Christmas, or to give them dance lessons or play soccer, or have a big birthday party. I can't imagine not being able to give my children those things. It makes me feel so bad for the parents who are good parents and who take care of their children, but are unable to provide for them. It's heartbreaking.

We're still plugging along. Keeping on keeping on. Waiting and seeing. We should get "Wait and See" cross-stitched and hang it in our house; it seems to be the Newell Mantra these days. I am doing better, managing my sadness and feelings of guilt. Lately I have had a lot of anger. A lot of anger at everything and nothing. An undercurrent of rage. I wish that I could stifle it, but if anything, I've learned that I deserve to feel how I feel and that I shouldn't feel bad for feeling sad or happy or mad.

Thursday, October 20, 2016

My Monster

Infertility is a very lonely diagnosis. Even though the statistics are now 1 in 6, you feel very alone. Especially during this time of year, when the holidays are starting, there's lots of family activities, traditions, and child-centered activities. It is very lonely to be surrounded by your friends and family who were so easily able to have children, who have no idea how this feels. You think absolutely awful things. You feel absolutely awful things. But mostly, you stay inside your head a lot, which is not the best place for a lonely, emotionally unstable person to be. 

As someone dealing with infertility I have quite the "social" life. This week I have been to the doctor (always a fun experience), gone to my monthly support group, and gone to my weekly art therapy. My support group is AWESOME. Imagine being surrounded by a group of women, all going through the same traumatic experience you are, and all know exactly how you feel, why you feel it, and we're all there to support each other. It's a very cathartic experience, hearing other women talk about their experience and getting advice and tips on the next steps in your own journey. I always feel so much better after going to meetings. 

There is a study in Richmond on the effects of art therapy on women suffering from infertility, specifically focusing on depression. Having never been in any sort of therapy, I was really nervous at my first session. I had a hard time opening up and I was worried that I wouldn't be able to artistically express my feelings to a stranger. I had no problems drawing my feelings; in fact, I was rather surprised to see what I had drawn (I will post pictures of my artwork at the end of the study). What was more amazing to me was that it worked. I felt better. I learned how to process some emotions and how to deal with triggers that may cause breakdowns. And that was only my first session. 

At my second session, I drew something that I was ashamed of. After my first session I made myself promise to be honest with my therapist and myself during our sessions. So, I drew what I was ashamed of. I call her "My Monster." 

I have often "joked" with Trey that he didn't know he was marrying a monster when he married me. I may not have had My Monster when we were first married, or maybe she was just lying dormant. But this experience has brought her into the foreground more times than I care to admit. 

My Monster is me. She is this thing that I have become since being diagnosed with infertility. She only cares about babies, timing ovulating, the two week wait, hormones, shots. She does not care about Halloween decorations or having a clean house. She does not care about her friends and what their lives are like. She does not care about being nice to the strangers at the grocery store or not running over the annoyingly slow people crossing the street. She is the cause of my awful thoughts. She is the deep sadness that I always have, even on good days. She is the cause of my exploding anger at nothing and no one in particular. She is the reason I want to be numb sometimes. I feel her presence all the time, off my right shoulder. She is always there. She comes to work with me, she goes home with me, she goes on trips with me. She is the niggling feeling I have when I am happy. She is the reason true happiness doesn't last very long these days. She is my guilt, my punisher, the worst things of me. She is My Monster and she lives in me. 

My therapist asked me about making the decision to stop treatment and what it would mean for me to make that decision. I told her that would break my heart to have to make that decision. I would not make that decision lightly and it would probably the hardest decision I would ever have to make. I don't want to give up. I have gone through so many failures already that I cannot make the decision to just stop, not right now, not when there is still hope. When I finish my journey I want to be proud of the decisions that I made. I want to be proud of the woman that I am. I don't want to look back on myself, at the most critical parts of this journey and think that I could have done more, that I should have fought harder. I don't want to be ashamed of myself. 

And so we come back to My Monster. She sucks. I hate her. I wish I never met her and that I don't have to live with her. But, she is me and I am her and so I will try my hardest to not let her screw with who I am. 

Sunday, October 9, 2016

Welcome to the Club-Part 1

People belong to lots of clubs: the single mother club, the widower club, the breast cancer club. Sometimes they're fun clubs like the millionaire club or the own lots of houses club. But I belong to the infertility club.

I joined this club, reluctantly and in tears, officially in September 2014. Fair warning, this is my story and I'm not holding back.

Don't say I didn't warn you.

I spent most of the summer of 2014 in pain and unable to sleep due to heavy periods. I cannot even describe to you how awful and disgusting this was. Well, I could, but that would mean reliving it and I'm not inclined to do so right now. The only point that needs to be made is that something was wrong. And something had been wrong. For nearly five months I was bleeding, having awful cramps and didn't sleep more than a couple of hours per night because of it. I knew something was wrong but I didn't want to be told that I was right.

Eventually it became too much. I was exhausted. I felt sick all the time. I could barely last a whole day at work. And I was terrified and had been for a long time.

I had a myriad of tests done, lots of blood work, my first experience with an internal ultrasound (side note: at the time I had no idea that these existed. It was not comfortable. However, I've now had so many of these that I can read and interpret them on the monitor). I was given a diagnosis of PCOS, which was helpful and not helpful.

PCOS has an unknown cause. There is no cure. You can treat it by causing ovulation, but this is sort of a catch-22 because PCOS makes it super-duper hard to ovulate (hence the problems we're having now). I was put on birth control and was told to call at a specified time for follow up.

The birth control did not help. It didn't make anything worse, but it sure didn't make anything better. Then came something terrible. Something that didn't even cross my mind. And the whole experience was so painful and traumatizing thinking about it these years later makes me tear up.

I had a biopsy-of my uterus. I had a uterine biopsy. Sounds not so scary, right? All they do is snip a part of your muscle and that's it. But the first scary thing was that I had to have this because my doctor was concerned I had cancer. Waiting those 24 hours to get the pathology results back was absolute pure hell.

The other awful thing was the biopsy itself. It's not the easiest thing to get into, a uterus. There's this thing called a cervix that, unless you're in active labor, is a fairly small opening. It's too small, in fact, for all of the tools (needles, etc) that have to get into your uterus. The way that they make room for all these things is by dilating it. Now, when a cervix is dilated for birth it dilates slowly. It does not happen all at once. When it has to be forced open, when a forced dilation happens and it goes from 0-60mph in two seconds it....it's an experience. So far in my journey it has been the worst medical test/physical feeling I have ever had. Your vagus nerve has to be stimulated to force your cervix open and then all these tools get shoved in and then they cut a piece of you out. So, to sum up, not fun at all.  I felt nausea, I felt hot, I cramped, I am pretty sure I lost consciousness for a few seconds. I had to lay on the awful table for several minutes until I could even sit up.

After I could stand up I went to put my clothes on and got some water from my nurse. I left the office and I went to sit in my car and I cried. I cried because I was exhausted, I was terrified, I was hurt and slightly traumatized, and I was nervous. My legs were still shaking and I didn't feel comfortable enough to drive so I did the worst thing-I googled symptoms of uterine cancer on my phone.

I got a phone call the next day. I did not have cancer. "Just the PCOS!" the nurse said cheerfully. Yup, just the PCOS. I had a diagnosis. I had a reason that this had happened. I have an incurable disease.

And I had just been accepted into The Infertility Club. I just didn't know it then.

Tuesday, September 27, 2016

Anger...it's a Four Letter Word

I sit down on my bed. Tears form in my eyes and I shake my head as if to clear the last three minutes from my memory. Like that will reverse time and I can still be the same person from three minutes ago. But it doesn't.  I am still holding the negative pregnancy test. The box of tampons I had to pull from the closet are sitting at the edge of the bed where I put them. I can't go back in time.

They come now, the tears. I can't stop them. I can't hold them back any longer. My body has failed me. Again.

Trey is downstairs.  I can't tell him yet. I need just a few minutes to grieve by myself. I need a few minutes to lose my strength, to be a mess before I can tell him.  I can give him those few minutes that I couldn't give myself. I can let him hope just a few minutes longer.

Two weeks later and it's fall.  My favorite season. Or it was. I'm not sure that I have favorites now. I have work and I have shots and I have medicine and I have tests and I have more tests and I have tears. None of those are my favorites.

I snapped at Trey today. There was no reason. No reason at all.  I felt bad afterward and I apologized and cried (there is a lot of crying on my part in this house nowadays). I told him I was sorry because when he married him he didn't know he was signing up for this. He didn't know his wife would turn into this monster...and that it will only get worse. I am not the same woman he married. And I apologized for that.

There haven't been a lot of good days lately. A lot of heartache and heart break. A lot of anger, mostly towards myself though I occasionally do yell some choice words to unsuspecting drivers.

I feel anger towards the people I see who have babies. Or small children. Or really any size children. I want to ask them how hard they had to work to have those babies and if they deserve them. But that's not fair. To them or to me.

I am angry at family members who didn't react how I hoped they would, or who didn't react at all.  I am angry at (ex) friends who don't think before they speak and say hurtful things, whether on purpose or not. But mostly, I am angry at myself. And that's not fair, either.

This is not an easy journey. It's not even a hard journey. It's an impossible journey. It's a journey that you can't imagine yourself taking until you are already in it-whether you want to or not. All of us on this path have no idea what the end will be like. We climb painful and difficult hurdles only to wonder "Is it going to get worse?" "Can I survive worse?" We take devastating blows and yet still get up to face the next impossible task. We are beaten up. We are tired. We lose hope. We lose reason. We lose a lot. It's an overwhelmingly emotional journey.

But we're not done. Not yet. We still have a lot of options, which means there's a lot of room for more heart break and more sadness, but there's also a lot of room for happiness...and maybe still a little bit of hope.

Next steps for us:
Hysterosalpingogram (HSG) and a last round of taking the Letrozole/Ovidrel

If you're reading this and you're on the same journey, but not yet ready to talk about it, I would highly recommend checking out RESOLVE: the National Infertility Association (www. resolve.org) and liking their Facebook page. There is a lot of information on their website and many locations have peer support groups.

If you're a family member/friend of someone suffering through infertility I recommend these two articles:
Family and Friends PDF
Infertility Etiquette

Thursday, September 8, 2016

You are not a Failure

Today has been difficult. Not the most difficult day I've had so far on this journey, but definitely not the easiest. Truthfully, I don't know that I could classify any day thus far as "easy" but you know what I mean.

You are not a Failure. Yes, I am capitalizing the "F" on purpose. It is a proper noun to me now. At least once a day these words have to go through my head; I have to say to myself that I am not a Failure, because otherwise those dark, failure-like feelings will stick. You are not a Failure.

It's hard, though, to think of myself as not a Failure. Some days I think in the dictionary, were one to look up the word "failure," my picture would be there. Right next to the word. And you wouldn't need a lengthy, wordy description, because it would just be me.

My body has failed. One of the many preprogrammed things it is supposed to do, it doesn't. Not without some poking and prodding and maybe an injection or two-sometimes. The millions of years, eggs are released from ovaries, descend into the Fallopian tubes, become fertilized and implant in the uterus. Sounds like four easy things to do and yet I've failed them all.  And if my history is correct I've been failing them for years before I even knew. I was a Failure before I knew to call myself one.

The thing about infertility (and yes, that IS what we're talking about here) is that it doesn't just affect one person. There's a reason that couples say "WE are infertile." or "WE are having trouble becoming pregnant." Yes, in this case, I am the only one with the problem but consider this: if my husband ended up with someone else, he may not be experiencing any of this, right? Therefore, WE are infertile.

In this time of waiting, of wondering how much longer, how much more pain, how much more Failure, and yes, how much more money, I wonder why.  Why is this my burden? Why am I broken? Why do we have to go through so much so that my husband can become a father? So that my parents can be grandparents? WHY is it me? Why me?

1 in 8, you know. 1 in 8 couples are facing infertility. ONE IN EIGHT. With those odds, chances are you know someone, probably you know two someones. Maybe they haven't come out of the shadows yet. Maybe they're not ready to be vulnerable and to have all of their sadness out in the air-where people can hurt you even more. And that's ok. I struggled for awhile to talk about our infertility. It wasn't until  a then-acquaintance of mine shared her story, right after I was diagnosed with PCOS perfect timing, eh? It wasn't until then that I was ready to share mine. I don't want anyone to ever feel like they are on this journey alone. No one is alone. It may feel like you are, for awhile at least, and some days are so crushing that you know you are the only person on the planet who knows what this is like. But no one is alone. You are not alone.

Today, I may have felt like a Failure for most of the day. Today, I may not have kept all of my positivity. Today, I am struggling. Today, I need you to hold my hand, to hold my head up because I am so exhausted I can't by myself. Today, I need you to let me lean on you. But tomorrow, tomorrow is a new day and you might need me to hold you up-and I will. I will hold you, I will comfort you. No one is alone on this journey. You are not alone. And you are not a Failure.

PS-to read about my friend's amazing journey check out her blog

Wednesday, August 24, 2016

State of Affairs

"Every day, women are winning battles that no one knows anything about." (paraphrased from a blog I follow).

How true this is. Cancer, infertility, loss-of any kind.

The thing about loss is that most of the time people talk about a person that they lost. We talk about the people we lose all the time. What we don't talk about, at least not very often, if the loss of the life we thought we would have.

When we lose that image, that future that we've built for ourselves it hurts. Not a lot, at first, not as much as we thought, because there is still hope. Hope makes a protective barrier around our hearts, our souls, for a time at least. And while we still have that barrier, that hope, we are still mostly ourselves.

At some point, and this is different for different people, that barrier begins to thin. After so long, after so long of trying to get our lives back on track, hope begins to dim. This sounds terrible, doesn't it? It sounds absolutely soul-crushing. And it is.

What happens to some people is that they let the hope. They let the barrier become permeated with darkness and despair. They think it is the end. That there is no more hope. And they're right-there may not be any more hope for the life they want. 

What should be done, what I hope happens to me, is that even if I lose that hope at the beginning, I want to be the kind of person who hopes for a different future. One that is not filled with despair. I hope that I can be the person who learns to live with the new pathway, the new kind of life that has been given, whether it was I had thought for myself or not. I hope I can be her.

Right now, I still have that first barrier. There is still hope. There is still hope that what I want most in the world, what my heart bleeds for, is still possible. I hope that I can keep that hope, longer than what my brain tells me I should.  I hope that, even if I lose the life I thought I would have, that I am able to accept and live graciously, the life that I am given. I hope that I can be happy with that.

But most of all,  I hope that I can be enough. Not enough for my family or friends, or even my husband. I hope to be enough for me.

"I’m not sorry you have learned to love yourself for your strength and courage. This journey is not easy, but you still get up every morning and find your inner strength even when it feels like there is none left."  (http://www.scarymommy.com/struggle-with-infertility-ttc/?utm_source=FB)

This quote has resonated with me ever since I read this article. This is the battle that I try to win every day. This is what I hope for. That I can love myself for my strength and courage. Some days this is harder to do. But each day, I will never give up. I will learn to be enough. I will learn to love ME. I will have strength. I will have courage. I will have hope. I will be enough.