When HOPE becomes a 4 Letter Word

Hope

I know I've written about this before, but I continue to struggle with this concept.  We had our 2nd opinion consult a few weeks back and I was really pleased with Dr. Neutral. I appreciated that he made no promises and as much as I want the Quick-Fix, I was OK, to reassess all options. In that appointment he talked about IUI and wasn't sure that I needed IVF. 

I'm educated. I enjoy reading research. I listened when he and the nurse both talked about my risk of a 3rd ectopic being between 8-12%.  I spoke with Mr. T's Aunt who happens to be a very level headed OB/GYN. Mr. T and I talked, we thought about risks and thought about a family of 4.  For a few weeks, it was nice to not be on the timeline of an IVF clinic. I felt a weight off my shoulders and I felt hope.

My instructions were to call when my cycle started or if that didn't happen, to call within two weeks. Last Monday was two weeks. I called, 7am bloodwork.  The nurse called, HCG was negative but progesterone was elevated. I asked what that meant. She answered it is highly unlikely that you are pregnant. (enter a tiny, tiny voice of hope). I know what highly unlikely means but I also know that it doesn't mean NOT.  She told me to wait a week and call back. 

So, I did. I thought to myself, wouldn't it be crazy if after 2 ectopics, 3 surgeries, 1 blood transfusion, two cancelled IVF cycles, a push to use donor egg and two doctors, my body pulled through?  

It would, right?

Because highly unlikely doesn't mean NOT.

My brain recounted the statistics that the average person has a slim chance of conceiving on any given month and that I am far from average. My brain signed up for a spinning class two times a week to try and lose some stress pounds before I tried to get pregnant. My brain had two glasses of wine at dinner on Saturday and threw out the coupons for 20% off baby items at Babies R Us.

My heart heard highly unlikely and allowed HOPE to creep back in. My heart guided my hands to search the Internet for due dates and came across one that would have given me a due date of November 2, the day before my birthday. My heart thought it would be a source of closure to go through a successful pregnancy with a parallel timeline to the loss of the first ectopic. 

My heart felt hopeful but my brain saw this coming. 

I called yesterday and felt a little bit of hope. I was to go back this morning for a repeat HCG. 

The nurse just called.

Negative.  

At this point, I'll take Provera and in a few more weeks, we'll get to all the testing and monitoring. 

Hope can be wonderful. It can be uplifting and inspiring. It can also hurt. Hope is personal and open to interpretation. We can convince ourselves that something will happen because we have a 'feeling' and that perpetuates the hope.  Hope can be a double edged sword in that it can lift you up and can bring you to your knees.

In the end, it was a nice few weeks without too much monitoring or stress. I'm grateful for that. Soon, I will jump back into the world of fertility treatments and I will be balancing hope and logic.

The check is in the mail.

Less $500 for monitoring and office fees.

I must say, I'm a little surprised at how cold this process was. I called and left a voicemail for the financial coordinator at Dr. Millionpicturesonthewall's office, and she left me another voicemail today informing me that the check would be in the mail. 

I'm not sure what I expected. I know that I wouldn't have some dramatic scene with Dr. M calling me asking me to come in for a face to face appointment, wrinkled brow and concern in his voice. But six months of almost weekly to twice weekly appointments down to 2 voice mails and a hefty refund with no conversation. 

Weird.

It is OK and probably better. Tomorrow I have an appointment at the new Baby Lab at 7:15am. More bloodwork and more monitoring. 

Let's hope we are turning the corner.

BFP = Big Fat Postive = Pregnant

Just kidding, kind of.

On this Sunday of President's Day Weekend, last year,  I had taken two home pregnancy tests and felt that my nerves were ragged after 3 months of negative home tests. Imagine that, feeling that sad after 3 months. It is a funny story, really. Because I had gone through about 6 of the super expensive digital tests, I went to the cheapie generic ones. Well, Sunday morning, I woke and tried the test. Wouldn't you know, it broke. I went about my day, looking at carpet, eating lunch at McDonald's (haven't been back there since) and thenI went to do my grocery shopping  and picked up a name brand $16 test.  Mr. T put Toddler T down for his nap, and we waited. Back to the ragged nerves, I couldn't even stand to look at the test. I handed it over to Mr. T and was honestly shocked when he said "Pregnant."

Pregnant. Ahhhh, Pregnant.

We had plans to celebrate my father in law's birthday that night and we were excited to once again have our own little secret. We were also excited to talk with Mr. T's brother and fiance about their wedding plans. It seemed like everything was falling into place for everyone. I felt content with my mild nausea while I held my Pinot Noir up to my mouth for my fake sips at dinner. I even imagined what style dress I might wear to the wedding. I made a mental note to browse the Pea in a Pod website while at work on Tuesday.

Then it changed. All of it. The online maternity dress browsing, the reviews of the best double strollers, the planning my life as a Stay at Home Mom. It changed when I heard the doctor say "Early ultrasound to detect viability." In a flash, I was reading every single article I could about miscarriage, threatened miscarriage, subchorionic hemorrhage, vanishing twin syndrome, HCG levels by week and anything else I could to try and understand what my body was already telling me. But I never ONCE came across anything about Ectopic Pregnancy. This fact haunts me to the day.  The idea of that pregnancy being possible ectopic fell off everyones radar. I even asked my doctor what she thought would have happened differently had I asked that question to the nurse. "Do you think it's an ectopic?"  I'll never know and she didn't say.

In the 365 days since I got the 2nd ever positive pregnancy test in my life, I then got a third and went through 3 surgeries, a dose of methotrexate and a blood transfusion. I have also had 2 attempts at IVF cancelled and a change in my doctor.

Other things have happened in this past 365 days. I got to realize my dream of being a stay at home mom to Toddler T. I have been able to enjoy so many things about his personality. I have had the opportunity to challenge some of my beliefs on Eastern vs. Western Medicine and have been pleasantly surprised with my reaction. I have learned to let some things roll off my back. 

I wish I had that crystal ball to know what I might be writing about 365 days from now. Will we remain our family of 3? Will we be successful in building our biological family? Will we move on to adoption?  I wish I had those answers because I'm anxious about how these next few months will go. March 16th was the day of the emergency surgery and April 24th would have been the due date of my 2nd ectopic pregnancy.  I just pray for the strength to deal with whatever may come as these next annivesary dates come.

Acupuncture

Is life changing.

It is hope, calm, self-indulgent and beneficial all at the same time.

I wish I had gone 12 months ago.

I fully embrace the tiny needles. It is true, they do not hurt.

I pray to be one of the 40-60% that report a successful IUI/IVF/natural cycle with the use of acupuncture.

If you are considering it.. GO for it.

I'll listen to my 2 year old instead.

As you may have guessed from my last few post, the last week has been a hard one.  I would be willing to say that it has been more challenging than dealing with the immediate aftermath of the two ectopic pregnancies. I wrote in a previous post, that if my 2nd IVF cycle was cancelled, it would surely be the end of me. Well, since it's me typing and not a ghost writer, that did not happen. I'm here. I'm standing. I'm getting a new plan together.

Now, let's be clear. I'm not standing on my own two feet. This past week, I have been surrounded by a large group of people who stepped in and helped to prop Mr. T and I up, when it seemed to be too much for us. Here is my very public thank you to all that checked in, emailed, called and came by to hang out with Toddler T. Your help allowed us to take a deep breath and reassess and reaffirm.  

Our goal is another child. And we'd like to meet that goal in the safest and most efficient way possible. So, revisiting another IVF protocol that uses Lupron did not seem to make too much sense. Nor, does it seem to make too much sense to stay with Dr. Million.pictures.on.the.wall.  I will never take away that he is a very intelligent man. But this is a business and we are paying him. We gave him 6 months of our time and in the end, it just made sense to part ways.

We will start things up next month and go back to the drawing board. Full work up and a realistic reassessment of the risk associated with an IUI vs IVF.  This makes me feel more in control and like the pendulum has swung back from NO HOPE toward IT MIGHT BE OK.  The megaphone is there, although it has quieted some.  

Dr. Neutral seems to be a better fit for us and he didn't jump right on the egg donor train. 

But the biggest thing that has lifted my spirits?

My son.

He gave me hope in the innocent way that only a child can.

Mr. T and I were giving him a bath Thursday Night.  It was a bubble bath and he was digging bubbles with a shovel. He put some bubbles aside and muttered. "I'm saving these for my sister." I  heard it. I asked him to repeat himself a few times, but he wouldn't say it again. Then Mr. T said,  "He said what you think he said, I heard it too."  

It was just what I needed to hear.

Riding the IF rollercoaster.

I started a post yesterday to summarize my 2nd opinion appointment. I didn't even have the energy to type it out. I feel drained. I feel lost in this world of life creating science and medicine. I am amazed to truly have an understanding of the analogy "this is a roller-coaster ride", used by so many people who are facing infertility. I thought that the roller coaster effect was measured over the course of several days or cycles. I had no idea it could apply to one single doctor's appointment.  I think it has taken me a day to get over the nausea related to the emotional G-force that we experienced yesterday.

The clinic was well-appointed, the rooms nice, the staff friendly. There was neutral artwork on our doctor's wall, not one framed diploma, article or magazine cover. It was clean and he was 'purposfuly neutral.'  Given my experience with Dr. Million.pictures.on.the.wall, and his 'slam-dunk and super sperm' comments, I was OK with this subdued persona.  Dr. Neutral gave us an hour of his time and went through my 12 page, new patient registration form with a fine toothed comb. 

The safety harness of the Free Fall at Great Adventure just tightened around my chest. 

I felt that I may fall of the side of the world at any given moment. Drooling for a scrap of good news, terrified of the bad. It was wonderful to have Mr. T by my side and pen and paper to make my notes. Dr. Neutral believes that my history and lab work are in conflict with one another. For instance, I have an undetectable measure of AMH. This is bad. This indicates poor egg quality and low egg count. But in reality, I have gotten pregnant 3 times, with no assistance and no more than 3 months to attain a pregnancy. He then asked about diagnostic tests. Truth be told, we sort of jumped past all of that, because I was told by two doctors that the safest way for me to get pregnant was via IVF. I did not feel the need to subject myself to more testing and Dr. M agreed.  Dr. Neutral, did not. 

CLICK, CLICK, CLICK, going up to the top of the ride

His recommendation was that I take one month to have a diagnostic cycle. Clomid Challenge Test, HSG, a complete lab workup. Mr. T will complete a sequential SA to get a more accurate picture of his motility and all that great stuff. I was perplexed, why, why back to this, when I needed IVF?  

Dr. Neutral isn't convinced that we needed IVF in the first place. 

Yes, you read that correctly. He is not in agreement that I have a 30-50% chance of a 3rd ectopic. In fact, he'd put it around 8-12%.  EIGHT TO TWELVE percent is a low enough percentage, that I would have considered trying naturally without one damned injection or ultrasound or 7am blood draw or any of it. 

AND FALL

He suggested starting back with an IUI. That with close monitoring, if a pregnancy resulted and IF it was ectopic, he would know early enough to avoid rupture and treat with methotrexate. 

AND GO AROUND THE FIRST TURN, UP TO THE TOP.

Then he preformed an ultrasound and commented that I had a low Antral Follicle Count. and that this low AFC coupled with the low AMH, was concerning. These two together, indicated a challenge with egg production and obtaining a healthy, intrauterine pregnancy. 

AND SWOOSH DOWN

And then my voice cracked and the tears welled up. I sat on an exam table with my familiar paper sheet, Mr. T at my side and said "I am losing hope that this will ever end."

When all of this started, I truly believed that given what we had been through, Mr. T and I would dodge the bullet of the emotional train wreck that is infertility. From my very naive point of view, I looked at it like this: Ectopic pregnancies are bad. My risk is high, issues are tubal. IVF will be the answer and I will be pregnant with one baby by Christmas. Six months after my 2nd ectopic pregnancy and I am NO closer to bearing a child than I was on the day I was discharged. I am now going back to the drawing board. In a way, that is a good thing... because obviously something was off. But emotionally, these are thoughts and feelings I wasn't ready to need to face. 

This is all consuming. It is the first thought when I wake up in the morning and the last thought before I go to sleep. I feel half present in my interactions with family and friends. I am conversing and smiling and maybe even cracking jokes. But in the background, there is a person with a megaphone SCREAMING... YOU MAY NOT BE ABLE TO GET PREGNANT! I am afraid that I am becoming self-centered and unable to be invested in what's going on with those around me. I am not sure how to turn off the megaphone.  I want to, but fear it will only be silenced with a successful pregnancy. 

Mr. T and I are together on a ride we never signed up for. No one does. But we stay on it, because I want the picture that you get when you leave. Not the one of everyone making a funny face with their hair standing up, that was taken by an automated camera at the second drop, but the one taken by an ultrasound tech that outlines a perfect baby that you will meet in just a few months.

One foot in front of the other..

In my many years as a social worker, I have told countless people that sometimes, you just need to put one foot in front of the other. I, am doing just that. I'm not sure where this path is going to take me. To be honest, I'm not sure I want to know what is around the next corner. So, for today, I am just putting one foot in front of the other. Left. Right. Left. Right. Left. Right.

It is my only option. Crawling into bed, with my fists held angrily in the air, yelling "why me?  why me?" just doesn't fit my lifestyle. Besides, I hate to think of Toddler T seeing such a display. So, I will just let my brain imagine that's what I'm doing. In my imagination, it feels kind of nice to have such a All My Children meltdown. 

But since the only thing Susan Lucci and I share is the same hair color, I'll move on. I had the chance to speak with Dr. Specialist yesterday. He called bright and early at 8am on Monday morning. He jumped right into what we'd do differently next cycle. A huge increase in the stimulation meds and back to the Long-Lupron protocol. He told me to think things over, but that I didn't have too much time on my side. He also threw in a commentary about the quality of my eggs. His theory is that the two ectopic pregnancies may have been related to poor egg quality and not tubal issues.  I'll admit, that sounds suspect. And if I have such rotten eggs, why would I go through IVF at all??? He backed off on the donor egg conversation and told me to call with any questions.

Since he didn't give me too much time to interject, I guess it will need to be my little secret that I'm getting a second opinon. I confirmed that I have a referral to the new doctor, got an updated referral for him and checked that my medical records will be ready for me to pick up tomorrow, AFTER Tumble Bears.  I also think I'm going to revisit Traditional Chinese Medicine.  I called an accupunturist who works with infertility issues. I even ordered a copy of the Infertility Cure.  If you read my blog and have had success with either, please, please, please share. 

That's all for now. Wish me luck with the second opinion tomorrow. It would be very nice to have a hopeful doctor's appointment, following 12 consecutive months of sad, dissapointing or painful ones.

Cancelled

One word says so much, yet doesn't even come close to explaining how much my heart hurts at this very moment.

I had a small reason to be suspect after Wednesday's monitoring appointment. I was trying to remain hopeful and really felt like the medications were doing their jobs. I was tired, felt bloated,  had hot flashes and headaches. You know the symptoms that I'd love to complain about, but this time wanted to embrace. Because maybe, just maybe, that meant that things were working.

I went in for my monitoring appointment this morning and was feeling full of hope. I was ready to talk about trigger date and retrieval and all of that good stuff. The phase that I hadn't yet gotten to. The part where I would be one step closer to being pregnant.

But that is not the case.

Where my math skills failed me earlier in the week, they were dead on today. In the stimulation phase, the goal is to track more follicles and larger follicles with every appointment. Today they were smaller and there were less of them. My nurse believes that this cycle is over. Again.

I asked if Dr. Million.pictures.on.the.wall would be available for a consult to review what is happening with my reproductive system. She replied, "You may schedule a consult with Dr. M whenever you think its appropriate."  I then said "I'm not a special snowflake and don't need the royal treatment, but this doesn't warrant a phone call from him." She said she'd check, but couldn't make any promises. In all honesty, I don't blame her. This is the way the practice works.  I'm just not sure it's working for me anymore.

I cried. I cried my best Julia Roberts "Don't Talk about me like I'm not here" tears from Steel Magnolias. I hustled out of the office and handed my office visit sheet to the receptionist and told her I didn't need a follow up scheduled. I opened the doors with too much force and the door slammed against the metal frame. I then realized that I had left my jacket in the office, so I sheepishly turned around, muttered a tearful apology, retrieved my jacket and got the hell out of there.

Then I cried some more. I called Mr. T and he kept saying "I'm sorry", which prompted Toddler T to keep asking Daddy why he was sorry. Finally, Mr. T answered that he was sorry that he forgot to leave coffee out for Mommy.  Then I cried and called my mom. I told her that maybe it is time to accept that Toddler T is our only child. She offered to leave work immediately. I declined. She then told me that she truly believes that one way or another, we will be parents to more than one child. I will let her be my belief system for right now.Then I called Wheezey and left her a voicemail. Then I called someone else, then someone else, then someone else. I was too sad to be alone with my thoughts. Shocked stupid to the point where I just needed to keep talking, even if I couldn't really follow what the other person was saying to me.

There is a level of pain and sadness that I cannot wrap my head around. We are approaching the one year mark and I never in a million years would have believed that I would be where I am today. I feel lost, I feel inadequate, as the body I was given can't fulfill its duties, I am scared and losing the ability to stay positive. Today, I cried. My husband, mother and mother in law all cried. My son asked me why I was crying and I had to tell him that I stubbed my toe when I was walking up the stairs. He went and got me ice and kissed my boo-boo. And that made me cry some  more.

I want to be a mother of more than 1 child. I want to experience having a baby again. I want the chance to be more relaxed with the newborn phase. I want to see my son love a sibling and most of all, I want our family to feel complete. This is a journey I would not wish on not one single person. It is not fair. It is not just nor is it equitable.

The one thing that does keep me going is that I am lucky to be surrounded by a family that just does what is needed and a husband that was sent to me for a reason. I am also lucky to have a little bit of the fight still in me. I have made an appointment at another clinic, for a second opinion, set up for next week. I have already faxed a records release to get my medical records and spoken with the financial coordinator to see how much money we can get back if we switch clinics.

My mother is saying a prayer to Saint Jude. I will be sending my prayers to Saint Gerard.