Cancer Ever After

Musings on Infertility, Adoption, Parenthood and Cancer

On Miscarriage – Part One.

PRIMAL SCREAM. That is the sound that reverberates in your head, in your heart, in your soul, when you are told you are losing a child. It’s hard to explain how real that child is to you, even when it’s not yet real to anyone else.

Our first is what I would call the miscarriage from hell. I had started my period (or thought I had) that morning and Tim and I were getting ready. I can’t remember what we were talking about, but when I suddenly yelled at him and then proceeded to start crying, he said, “Are you sure you aren’t pregnant?” We had been trying for a little over six months. I remember saying to him, “I just started, it’s not possible.” But, I went ahead and dutifully peed on a stick. Positive!

We were both giddy with excitement. I calculated my due date (the baby would be due the day before our one year anniversary), called the doctor’s office right away for an appointment, and just basked in it. I was only mildly concerned that I was still having a period. I asked about it when I scheduled my appointment and they brushed off my concern with “You’re fine–if the test said you’re pregnant, you’re pregnant and everything will be fine.”

I continued to bleed. After three days, I called the doctor’s office again because I was becoming concerned. This time I was berated for not coming in immediately–it wasn’t normal to bleed. I had to go in that afternoon for a blood draw. Tim and I discussed possible baby names. I began looking at baby bedding online.

They got the results. I was pregnant, but they wanted to do more tests. At this point, I knew nothing about betas, HCG levels, or ectopic pregnancies. I just knew that the doctors and nurses kept reassuring me that I was pregnant.

We were worried about the bleeding, but continued to be excited. We started working on taking down wallpaper in one of the spare rooms because we wanted to get the nursery ready.

I went back for blood work every other day for the next two weeks, and I continued to bleed. The nurses weren’t quite as peppy as I continued to come back, but I couldn’t get any definite answers. My levels were a concern, but they were within the normal range for pregnancy. We just needed to give it more time.

When I was five and a half weeks pregnant, they gave me the first ultrasound and we didn’t see anything.

“Does that mean I lost the baby?” I asked. They reassured me. “No, it’s still early. Your dates are probably off.”

I was becoming more alarmed with each visit. Our joy had turned into a constant concern, but still we dreamed. Was it a boy or a girl? And I continued to bleed every single day.

At six and a half weeks pregnant, I received another ultrasound, and another at eight weeks. Still no definite answer. At this point, I was afraid to dream of little booties and blankets. I had consulted Dr. Google and friends, and I knew that something was definitely wrong. I still bled every single day. They wanted me to schedule one more follow-up. I lost it in the doctor’s office right then and there.

“Why are you doing all these tests?Why won’t someone just tell me what is going on?” I burst into hysterical tears and a nurse took me into a separate room.

This was the first time an ectopic pregnancy or miscarriage was ever mentioned to me. Eight weeks into this beta hell. They had been drawing my blood every other day for weeks. My levels continued to climb, but at a slow rate, and that, combined with lack of a fetal pole or heartbeat on the ultrasound, meant the pregnancy was ectopic.

I could wait and do one more ultrasound (which is what they were scheduling), or I could go ahead and take a cancer drug that would end the pregnancy. There was no chance that the pregnancy was viable. If I waited, there was a chance I could lose an ovary, but they honestly weren’t exactly sure where the pregnancy was developing. They just knew it wasn’t in my uterus.

I’m sure they said more. All I heard was that my baby wasn’t going to make it. The little boy or girl that we had been hoping or dreaming of had no chance to make it because it was an ectopic pregnancy.

I cried for what seemed like an hour. Then I pulled myself together enough to find out more from the nurse. It was too much to process. I needed time and I needed my husband.

The time after that was a blur: talking through options, arranging for the methotrexate shot, going to the hospital. And then more bleeding. Ten weeks of bleeding in total. That is all I had to show for my baby. And more blood draws.

My levels still weren’t dropping like they wanted and if they didn’t drop by a certain amount, I would need a second shot. If we got a second shot, it would not be safe for us to try to conceive for at least six months. It felt like one blow after another. I just found out that I lost my baby, and then you tell me that you want to pump me full of drugs so that my body becomes toxic to a baby?

Luckily, my levels dropped. I took a week off work, and I cried myself sick every damn day. My husband was at a loss. Something that was so very real and so incredibly wanted was ripped from us.

My soul reverberated with that primal scream–a scream of complete anguish. I couldn’t see friends. I couldn’t have conversations. Life as I knew it was forever changed. This loss was profound and deep for me.

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Why Fundraise?

“Why are you adopting if you can’t afford to?”
“Why do you want a third child if you can’t afford to adopt?”
“It’s pretty selfish to ask others to help pay for you to have a child. A child is a want, not a need.”

These statements, or some variation thereof, have been heard many times by my ears since starting this process. Adoption fundraising is this strange new land for us, and it’s a really uncomfortable place to be. It is so incredibly awkward to have to admit that you need help in order to have a child–trust me, we’ve been there before. What’s new is having to ask someone to help us afford the costs to acquire that child, and the strangeness that it entails. Asking for help is one of the most difficult things I’ve ever done in my life, and I know my husband would say the same. We were raised to be self-reliant and asking for help is equal parts humbling and humiliating.

A part that has been surprising and challenging for me is getting people to understand the costs of adoption. I’ve lived in the infertility world so long. I know so many people that have traveled this path and we researched the hell out of it before we decided to have IVF. The costs have been obvious to me for a so long, I assumed others were already aware. A coworker said to me the other day, “You’ve raised $2,000, so the adoption is paid for now, right?” I wish! You would think that something like this, where both parties are in agreement of what they want would be straight-forward and less expensive, but it simply isn’t.  When I was explaining to a coworker that we are fortunate that the “reasonable and customary” living expenses are as low as they are, they were astonished that we were paying any. “WHY should you have to pay? You are doing her the favor.”

The world of adoption has changed a lot in the last 50 years. The Hauge Convention, knowledge about child predators, fears of forced adoptions, commercialization, changing legislation. All of these things have combined to create adoption as I know it today. There are a million parties involved in a modern-day adoption: attorneys (and there must be more than one to prevent coercion and provide fair representation), a home study agency, birth mother counselor, FBI, KBI, physicians, hospital social worker, you name it. It can be overwhelming with the sheer number of people and moving parts. And for each of those people there are fees. I don’t think that those people greatly inflate their fees, but most of them are involved as a business so their fees are high enough to make money. The costs just add up. Modern day adoptions can cost between $35k to $45k. We think we’ll luck out and squeak by with around $20K in expenses, $30k on the high end. The costs are high enough that I’m using a letter instead of zeros to write the numbers. It’s less scary that way.

So back to the question: why fundraise? Adoption wasn’t a path we were planning on taking, and it’s not something you typically undertake without a great deal of planning and saving. The chance to have this child fell into our laps and we knew how rare and wonderful that chance was. There were a million reasons we could have clung to as a barrier and said “no.” We had depleted our savings over the last four years, took out loans to get our girls, had twin toddlers in daycare. We hadn’t been saving for adoption or anything else and our medical bills have been high for the last several years. We didn’t have $10k let along $20k or $30k lying around. Most of the reasons to say “no” revolved around the finances. All of our reasons to say “yes” revolved around being able to love this baby. This child needed a home with parents who would love, support and raise him.  His mother was looking for a married couple who could provide a stable home and make sure he has opportunities as he grows. We were willing to do that. We’re fortunate to have two stable jobs and own our home. We have room in our home and hearts to spare.

When we looked at it that way, our only barrier to completing our family was financial. We could attempt to fundraise and see where that got us. It’s our time and effort and we are willing to expend the energy. Fundraising for adoption is pretty common these days. When adopting a child can easily cost $50k, most people have to fundraise for at least part of it. To understand more, I read blogs, I read adoption articles, I read books, I knew people who had fundraised. It seemed like a viable option.

I wasn’t prepared for how difficult it would actually be. The uncomfortable feeling, the judgement, the questions. In retrospect, it makes sense. People need to know that they are giving money to a good cause. And while I think that us having another child is the best cause in the world, it’s my cause, not theirs. Theirs may be raising money for cancer, ALS or the Boys and Girls Club. Everyone has their passion.

The other item I didn’t consider is that most people who do fundraise do so primarily through their church. Their church organizes the events and assists with promotions. It’s harder than I thought to get the word out when everyone has a policy against letting you post anything about a fundraiser. Some days are downright discouraging.

Once again, why fundraise? Because at the end of the day, the only barrier between me holding my son in my arms is money, and money is a temporary thing. Pride is temporary. I can get past humiliation. Love is forever. Every mother would tell you they would do anything for their kids. I’m no different.

Why fundraise? Because at the end of that path is Baby H, and he’s worth it.

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My Sister’s Cousin’s Niece’s Sister-in Law . . .

If someone says, “Just wait until you get pregnant on your own! You could have four kids!” again I’m going to scream. Word to the wise–every infertile has a few pet peeves. Here are mine:

“My doctor said I would never have kids.” Really? I’ve visited FIVE reproductive endocrinologists, TWO rheumatologists, FOUR perinatalists, and TWO ob/gyns. NONE of them said I would NEVER have kids. Best estimate is that I have less than a 2% chance of getting pregnant on my own. I’m not sterile. I’m infertile. That means there is a small chance a natural pregnancy could occur, it’s just very unlikely to occur during my fertile years. If your doctor told you that you will never have kids and you’re not sterile, you need a better doctor.

“Once you have a child of your own and/or adopt, you will get pregnant.” This is where I then hear the obligatory story of the sister’s cousin’s niece’s sister-in-law who got pregnant after a doctor told her she never would. Yet that same person usually has an aunt, a cousin or someone they know much better, and who they are closer to, who NEVER got pregnant after years of trying and without help. Or they did adopt and that miracle baby never came along.

The reality is that some causes of infertility can resolve on their own. Someone who ovulates only once or twice a year can get lucky. Someone whose thyroid is causing the infertility can experience a shift in their thyroid function and get pregnant. Yes, some people get lucky. But for every story you have of that random person who’s more than six degrees away, I’ll see that and raise you four.

I have friends with failed adoptions and no children. I have friends who have tried on their own for ten years with no miracle, or who have had five rounds of IVF without a single pregnancy. I know people who have had four, five or six miscarriages and no babies in their arms.

Unfortunately, those stories are a dime a dozen when you actually speak to infertile people. Don’t get me wrong–I would welcome that 2% chance becoming a reality down the road. But I’m a realist. That 2% chance will shortly turn into 1% at my age and then .05%. It’s just not likely.

And last, but not least: “Just relax.” Please don’t treat me like the only issue is how much I want a child. There is something wrong with my body. It’s a medical problem. I hope you don’t tell someone with cancer that your sister’s cousin’s niece’s sister-in-law cured herself of leukemia by drinking warm lemonade through a paper towel on Tuesday mornings. Sure, that will solve things!

I realize this post may sound ranty to some, but I want this to cause at least one person to pause before they say these things. Think about the person you are saying them to. I’ve found a measure of peace with my infertility. I’ve found my path. But these words shred the soul when you are still finding your way. None of us wants that.

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12,182,400 seconds

It may mean I’m absolutely neurotic, but I calculated the number of seconds from when we found out about the adoption to the due date for our son. I was driven to do this because it was exactly the same amount of time I spent on bedrest with my girls: five months. Twenty weeks. 141 days. 3,384 hours. 203,040 minutes. 12,182,400 seconds. When I was on bedrest, I drove myself crazy with worry and I would swear that every second felt like an hour. I’m not sure I took a deep breath until we made it to 28 weeks and I knew the girls had a fighting chance to survive. Every moment after that was a second I held dear as I knew it was a stronger chance that they would be healthy and it meant less time in the NICU.

I can’t help but compare that to the five months that is flying by with this adoption. The first two weeks were a blur. Days felt like seconds as I consulted attorneys, chose a home study agency, and found a counselor. There were a couple of days where time flowed normally, but as we realized we would need to fundraise to help meet all of the costs, time entered warp speed.

Sell baby gear and odds and ends around the house, fill out paperwork for the home study, line up counselors, meet with the birth mother, fundraise, apply for grants, and research loans. Find a place to have a pancake feed–check. Find a place for a community garage sale (still working on that), make flyers, send emails, write PSAs, get the word out, network, connect with friends to see if they can help, and line up every dollar we can. There is still at least $10k that we know we need to bring to the table, plus we need a plan in place to fill any gap if our fundraising falls short.

And today, I received the final paperwork that I have to complete to prove how we will fund this adoption in order to get approved as a prospective parent. Please don’t let this be a roadblock. Our medical hardship from our 401(k)s fell through. My new employer doesn’t allow it, nor does my husband’s, much to our surprise.  We were counting on that. No time to mourn or think. It’s time to explore other avenues. More phone calls, more emails. Luckily, I have friends in the right places to get answers. We think we have a plan in place to replace the money we were counting on from our 401(k)s. I will juggle, I will dance, I will sing–anything to bring my son home.

In some ways, this is no different than someone with a surprise baby. Can anyone really afford a first child, a second or a third? Maybe not, but we can love him. More importantly, we are willing to take on the challenge of affording him for the rest of our lives. Three kids in daycare doesn’t make me bat an eye. Three in college at the same time? I’m game.

I’ll stay up late and crunch the numbers. I’ll call banks and line up possible loans all week. We’ll have a plan in place to gather our 10k (or more) and be able to answer all of those questions to get approved as adoptive parents. I will squeeze the life out of every one of those seconds we have until our son arrives.

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Roll with the Punches

Sometimes you walk straight into a left hook. Life just punches you right in the face. I belong to a twin moms’ group on Facebook. There are lots of great tips on dealing with newborn and toddler twins–little clever tips and tricks that I love to learn about. But there are also two kinds of twin moms in the world: those who are superfertile, who seem to get pregnant by walking past a man (e.g., my sister), and, well, those who are like me. Years-in-the-making, on-your-knees-praying, twin moms. This day my Facebook newsfeed was full of not one, but TWO of the first kind of twin moms who were freaking out because they had very young twins and just found out they were pregnant again.

Their reactions and my reaction to this news was probably not that dissimilar. I felt like someone had punched me in the gut. Their posts went on to express dismay and concern over this news. Now, I don’t know them. I don’t know if their husbands just lost their jobs, if their babies are colicky. There are worlds that I don’t know, and they are entitled to feel how they feel. It’s their life. I do know that I’m thrilled with this adoption and it feels 100% right. But it didn’t stop my knee-jerk reaction: “Why couldn’t it have been me?”

We haven’t used birth control in six years. There are no miracle pregnancies on the horizon for us. My body simply doesn’t work that way. But it’s always impossible to quash that last little bit of hope that someday, it would work as it should. That I would be able to do something that “comes naturally.”

My husband and I have agreed that if this adoption is successful, we are done. Our family is complete. But I can see that I will still have some healing to do over the fact that I wasn’t able to get pregnant on my own, that my body seemed to betray me and tried to kill my children. Sometimes I’m angry at the weird little things they found in my blood that seem to cause it all: the infertility, the miscarriages, the liver damage. I get jealous when I hear news like those mothers’, but that doesn’t change how I feel about this adoption. We’re in 100%. The only questions that mattered when we got that text was, “Can we love this baby? Are we willing to make it our own?” My answer remains unchanged, as does my husband’s. I may get jealous or feel wistful when I see news like this, but I’ve found my own miracle. And he’ll be here soon.

 

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