Cancer Ever After

Musings on Infertility, Adoption, Parenthood and Cancer

Snake Oil Salesman

What do you envision when I say the phrase “snake oil salesman?” Someone seedy? A quack? How about those who actually bought the snake oil or whatever was being sold? Until infertility, I always envisioned those who tried these “miracle” cures as fools. How could they be so naive as to believe that a certain tonic or elixir would fix them or their loved ones? I’ve come to learn that I was looking at this from the wrong perspective.

Two or three years ago, I could easily have been that eager audience member clamoring to buy the magical cure-all elixir. Imagine for a moment that you lived in the days before chemotherapy. In a time where there was no diagnosis or treatment for Crohn’s or Graves’ disease. All you know is that a loved one is wasting away before your eyes, or they are in unbearable pain. If there was even a sliver of a hope that what’s in the bottle could ease their symptoms or make them go away, would you take what that bottle offers? I bet you would.

That’s what infertility is like. What you want the most in the world is just out of your reach. You have no real explanation as to why things aren’t working; you just know they aren’t and you are willing to grasp at any straw. I used to live in online fertility forums. I’ve read stories of women who tried eating pineaple cores for a week or did head stands after sex in the hopes of getting pregnant.

I’ve tried many things myself: acupuncture, supplements, pills, shots, exercising, not exercising, yoga, meditation, eating clean, eating diary-free, and even electro-acupuncture. I was willing to try almost anything to get our miracles. I swear I even read of not one, but two, ladies who drank cow urine. The fertility industry, at times, reminded me of the stories of the snake oil salesman. People know they have a built-in audience that will do anything for the cure. Tim and I spend hundreds of dollars on all sorts of fertility cures in the hopes that it would bring us our dream baby. There’s not much that I wasn’t willing to try. (Although you’ll be proud to know I never did a handstand or drink cow urine.)

As you pursue the dream of family, it’s hard to focus on facts. It’s hard to weigh your options and it’s hard not to be swayed by a sexy speech that promises more. It’s surprisingly hard to trust your doctor.

There is a fine line between advocating for yourself and trusting in your doctor. I don’t believe that you can trust anyone completely with your health or your future because no one has as much at stake as you. You have the strongest motivation. But it is critical that you trust the doctors who you work with and believe in their judgement.

As a patient, I had to advocate for testing. I knew, based on past medical factors, that I had one weird thing in my blood. I didn’t completely know what it meant, but I knew that for some people it could be related to infertility and miscarriage. But it’s rare to be asymptomic with it (outside of miscarriages). My first doctor brushed my questions aside. I didn’t push. After we lost our identical girls, I demanded answers. He had none.

We researched more, and we decided to trek to Colorado to find a specialist who might know more. He immediately asked for more testing. In the end, it was determined it was a factor in the infertility, but not definitively the cause. It was a suspected cause for the miscarriages, and it did change our course of treatment. As we made that journey, I struggled to make sure that our decisions were based on fact, not some pitch. I read medical journal after medical journal to see the research firsthand. After he reviewed how he would treat us, I asked for articles related to the course of treatment. I needed to be sure that we weren’t pinning our hopes on snake oil. I also had to trust in him and his team and know that they had a wealth of experience to give us our chance at take-home babies.

That’s our one and only successful pregnancy.

That’s what brought me to seeking out medical professionals before trying to get pregnant again. Honestly, we received mixed answers. Some of the doctors felt like the risk of repeat complications would be much less with a singleton pregnancy and others felt like it wasn’t worth the risk. All counseled us to weigh another pregnancy very carefully. In my husband’s mind, it was never worth the risk. That’s why this adoption is such a blessing. We don’t have to roll those dice or take that chance. I don’t have to risk not being there for the two miracles that I already have in order to have a chance at having a third.

I’m not sad about missing out on another round of bedrest, or being sick, or being worried each and every day that I will lose another baby. That my body will kill another baby. A constant, overwhelming fear that something could go wrong at any moment is the strongest memory I associate with my pregnancy. The stories of a biohazard team being called in to clean the blood from my office floor and the entire floor being shut down after I hemorrhaged is funny in a not-so-funny way now, but it’s not a path I want to go down again.

And I don’t have to worry about falling for some miracle cure being sold by a snake oil salesman.

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It’s a Small World After All

How do you take the world and shrink it?

I’m from a small town and I’m used to word getting around in about five minutes when someone gets hurt or needs help.  It’s always a matter of six degrees of separation.  “Mary’s niece is trying to adopt a baby, and she’s having a pancake feed on Saturday. You should go.”   Talk to a few of the right people and word can get around a town of 5,000 in days. And this was before social media.  Now it probably gets around in a matter of minutes!  Don’t believe me? Ask anyone from a small town.

It’s different in the big city.  I don’t think human nature is any different, people are just as nice and caring, but you don’t have that feeling of connection with someone you don’t know, or only know through those six degrees of separation.  It takes more to compel you to act– you have to feel a connection.  Otherwise it’s just a sad story you heard about.

There are a few exceptions to this.  Events or things that make the world shrink can bring a city together. Unfortunately, tradegy is one of those things that can shrink the world.  I’ve traveled to New York pre 9/11 as well as in the months shortly after.  What truly amazed me post 9/11 is how New York felt like a small town.  The sense of community was overwhelming. Neighbors were helping neighbors and everyone went out of their way to help each other out.  New York City became every small town in America.  They were the very heart of America.

This also happens in times of joy or celebration.  The Royals playing in the World Series in Kansas City, helped shrink our city.  Weather you were a die-hard fan or indifferent, for a short time you were from Kansas City and you had a common cause.

This brings me back to the question, “How do you shrink the world?”.  What can we do so  people will realize that we are their neighbors, their friends?  That our story is the story of everyone who has tried to have a baby and wasn’t able to.

This is the true challenge of fundraising in a Big City. Tim and I don’t have a large circle of friends and for me, at least, meeting new people is hard. I’m an introvert who has trained herself to appear to be an extrovert.   No matter how often I speak or how many people I meet, my first instinct is to draw back. There’s always a spurt of terror at meeting someone new. To be honest, I’m perfectly content to live in my own mind most of the time; which makes shrinking the world a lot harder.

Tim and I have focused on sharing our story online because we are more comfortable with that, at least I am.  It’s hard to strike up conversations with strangers and I don’t tend to speak of the adoption as much in person. Right now, we’re focusing on shrinking one corner of our world — our neighborhood. We’ve put flyers for our pancake feed on every community mail box in all of our surrounding neighborhoods. (don’t worry, my picture is on them, the post office already knows who to arrest contact)

We’ve also gone full-on public with our journey. I’ve created a facebook page, and I blog to share our story and our journey. When I started this blog, we wanted to share our story so that people would want to be part of the journey, to invite people to become part of our world, or as Mr. Rodgers would put ask them, “Won’t you be my neighbor?”. What I didn’t expect was the therapeutic nature of the blog.  I never expected to blog as often as I have or feel like I have so many thoughts clawing their way out of me. But we have years of infertility, miscarriages, and treatments under our belt.  Our entire view of the world has shifted, and it’s nice to be able to express how that’s changed my life.

I also blog, because bloggers saved my sanity.  When you are infertile, at first you don’t share. It’s a shameful diagnosis and you feel as if you are lacking as a person. Everyone else can have babies and raise a family– why can’t you?  And later, the hurt from infertility is a raw aching wound. It simply hurts to share.  There were times when I thought if I started speaking about it, I would just start screaming and crying and raging. I was afraid if the floodgates opened, I would never be able to close them again.

I desperately searched for stories like mine after our first miscarriage (I found ONE in all of the internet), and as I went went through medicated cycles, IUI’s, and IVF cycles I poured over dosages, levels, and response rates from every available source. Reading those blogs made me feel like I had a friend on our very lonely journey through infertility.  Some blogs were old, they’d already found their success and I would pour through every entry on what they had done.  All of those blogs made the world smaller. I felt like I knew someone in San Diego or Boston — we were kindred spirits. I had a partner or friend in my journey. Someone who was showing me the ropes.

I hope by sharing our story, that someone else will find it helpful.  That a neighbor will feel like they know us, that the world will become a little smaller. And most of all, I hope that a lonely googler who is considering adoption, or who has recently had a miscarriage feels less alone. Maybe someday, someone will find hope in our journey when they think all hope is lost. Maybe someone else will read this as they try to fundraise to make the astronomical costs of adoption manageable, and they will see that it’s possible.

I hope. And I blog.

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On Miscarriage: Conclusion

I shared the details of our miscarriages and our pregnancy so that you can understand what it was like to be in our shoes. I don’t pretend to know what it is like for others as they have miscarriages. I just know it hurts no matter how or why it occurs.
I also don’t know what brings other people to adopt. I just know that for us, given our history, when this chance to adopt was offered to us, both of us had the same answer. It was simply, “YES!”We were at a cocktail party and someone asked us how we determined we wanted to adopt. As we explained how we fell into this adoption, I realized it may seem like we jumped into it without thought. We had actually weighed and measured adoption ad nauseum prior to having the chance to adopt Baby H. We had looked into home studies and domestic and international adoption. We had spoken with several agencies. You see, if we miscarried again, this was our most likely path. We’d already had discussions about adopting transracially and talked through our thoughts and feelings on that.

Our only hesitations were the cost, potential wait to be selected and the failure rate. I imagine that a failed adoption feels a lot like a miscarriage — it rends your heart in two. This was our biggest fear with adoption. We weren’t sure at that time if we could handle another loss. The wounds were so fresh. We closed that door, and committed to medical treatment thinking we had a better chance of success.

That door remained closed until a text message sent it bursting back open. We both knew immediately this was our path to our third child. In fact, our only thought (other than “yes”), was “Why didn’t we think of this sooner?” It just felt right. This was our path, this was our son. This was our answer.

The second reason I shared details about our miscarriages is because I’ve been on the other side. The side on which you have a friend who is hurting from a miscarriage and you don’t know what to do. You can’t fix it or make it better, but you can make a difference. Because of this, I want to share the following suggestions:

If someone you know has a miscarriage:

1.) Acknowledge their loss. It matters. And it’s a loss for both parents, not just the one who bore the child.
2.) Simply be there. They may not be willing or able to talk, but your support does matter.
3.) Make a gesture that shows you realize this loss hurts. Send a card, send flowers. Drop food by. Anything that you would do for someone who lost a loved one, consider doing it for a miscarriage. One of my friends simply popped by with a casserole after our second miscarriage. I wasn’t answering my phone, I barely answered texts, I hadn’t showered in days. She rang the doorbell, burst in with the food, a hug and a card, and then quickly left. But it mattered. That was the only food we ate for a week. I couldn’t bring myself to cook. That gesture remains close to my heart to this day.
5.) Offer support, not platitudes. It’s hard not to say, “It was God’s plan,” because there are no words that can make it right, but the wound is too fresh. It takes time to gain perspective. Consider saying, “I’m here for you, I’m happy to do whatever you need.”
6.) Ask what they need, or simply hug them. Keep in mind, they may not be in a place to tell you what they need yet.
6.) Help them find a way to memorialize their child or children. In most miscarriages, you don’t have a body to bury. There is no funeral. This makes it difficult to get closure. For us, attending a ceremony after our second miscarriage made us feel like all of our babies were remembered, and we continue to remember them this way each year.
7.) Remember, it’s okay if you are not sure what to do or say. Your being there makes all the difference.

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On Miscarriage: Part Three

I was 15 weeks and one day pregnant when I thought my water broke.

I knew something was wrong immediately. Fluid was rushing down my legs. I was hysterical, but the more I cried, the more fluid I felt, so I forced myself to stop crying, sure that if I didn’t move–if I barely breathed–that would give the babies a better chance of making it.

I laid on the floor waiting for the EMTs as my coworkers stood around me and tried to help. I had to give my miscarriage and medical history in front of my entire department, a new department I had joined about four months prior. Someone called my husband and my mom. I was barely coherent enough to tell my mom I wanted her to drive down immediately.

We were losing the babies. I still remember the doctor telling me I was being admitted “to observe the miscarriage.” They were going to do some testing, but I should prepare myself that the babies would probably not make it, given the volume of blood and fluid I had lost. It was just too early and at their gestational age, there was no chance that they would be viable.

I was admitted to the labor and delivery floor–an event that is usually greeted with joy. A sonogram was dutifully ordered, and to everyone’s surprise, the babies appeared to be fine. There was still enough fluid around them and their hearts were beating strong.

Nurses woke me throughout the night to check if my body had begun the miscarriage. I continued to bleed and lose fluid, but no cramping. Another sonogram was ordered first thing in the morning and the babies were still fine.

It was a miracle. It was early enough in the pregnancy that there really wasn’t any medical intervention they could do to help me keep the babies, so the doctors sent me home with a laundry list of signs and symptoms of miscarriage to watch for. I was to contact them immediately–I would have to be in the hospital if I miscarried because I was so far along and it was twins.

We were told, “At this point, the only thing you can do is pray.”

At that time, they determined I had a large subchorionic hemorrhage and one of the placentas was partially torn. I was put on strict bed rest and told that we would revisit that once I stopped bleeding.

That was the beginning of 141 days of bed rest. My girls were fighters. They held on through more hemorrhaging, a placenta previa, gestational diabetes, preterm labor, and preeclampsia. My body struggled daily to maintain the pregnancy and eventually my liver stopped working properly.

My husband took over all of the day-to-day tasks, cooking, cleaning, shopping, and yardwork in addition to working full time and preparing the nursery for our girls. He brought me freshly cooked dinners and spent the evenings with me anxiously awaiting the results of the daily blood draws. They would determine if my liver was still functioning properly.

It’s funny–during this time my only worry was the babies. Even as the doctors poured over the results of my daily blood draws and scratched their heads that I could appear to be as healthy as I was when my liver function was in the the tank, I only worried about my girls being able to stay in me long enough to be healthy.

Tim, on the other hand, prayed that he would not be asked if he wanted the doctors to save me or save the babies. Every doctor I saw (I believe it was 12 doctors in total) told me the goal would be to get to me 32 weeks.

My girls and I defied every expectation and held on until 35 weeks.

They were both born healthy. They are the miscarriage that wasn’t. And I’m so thankful for them each and every day.

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On Miscarriage – Part Two.

No two miscarriages are alike. Some happen at four weeks, some at 20. Sometimes you bleed every day, and sometimes you don’t know anything is wrong until the doctor tells you.

No matter how far along you are, it hurts. It’s not just losing a baby, it’s losing a chance to have that baby and all of the hopes and dreams you hugged close to yourself. You may go on to have another child, but it’s a different child. A miscarriage is a loss.

It may surprise you, but people often say, “Oh, you weren’t that far along,” to people who have an early miscarriage, instead of “I’m sorry for your loss.”

Having a miscarriage changes you on a very fundamental level. You no longer have the same optimism and elation if and when you do get pregnant again.

The joy at finding out I was pregnant for the second time was unbelievable. We had tried for another year and eventually sought medical help. And then we went through another year of pills, potions, shots and more. It was as if someone had handed me the greatest gift in the world when the doctor confirmed I was pregnant.

But my joy was tinged with a shadow of fear. It’s one thing to know that 25% of pregnancies end in miscarriage–it’s another to have it happen to you.

We had our first ultrasound and found out it was not one baby, but TWO! I had morning sickness and pregnancy rage (it’s real, just google it and then avoid any pregnant woman with it). This pregnancy was so different from our first. We had another ultrasound and everything looked fine.

And then one day, it suddenly wasn’t.

I can’t remember what drove me to call the doctor–something was just off–and they told me to come in. They weren’t worried, we weren’t worried. Tim had gone to work that day.

But I knew as soon as they began the ultrasound. There was no flutter where there should have been two. The tech quietly left to get the doctor, and the doctor looked, too.

Hearing her say it out loud was the worst. And not only do they break the news, they have to give you your options. You see, since it was twins and I was far enough along, I would have to go to the hospital and have a D & C. It was recommended that we not let it happen naturally, because at this point it might not be safe.

That D & C was one of the worst experiences of my life. To give you a perspective, I’m going to share a list I posted on Facebook shortly after the miscarriage. We had told friends and family about this pregnancy, so I was more open about the loss. This post is from when the miscarriage was still raw and fresh:

Ten things I hope you never have to hear firsthand:

10. “threatened abortion/miscarriage”

9. “It was God’s plan.”

8. “fetal death”

7. “If you just stopped trying and/or stressing it would happen.”

6. “recurrent miscarriage”

5. “What was your estimated due date/date of last miscarriage?”

4. “We’ll send the products of life out for testing.”

3. (at check-in to lose babies): “Your total for the procedure today is $1,832.14. Please have the courtesy of paying before you leave.

2. “Monozygotic twins have a higher rate of birth defects. This really isn’t a surprise.”

1. “Both of the babies’ hearts have stopped beating.”

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