Cancer Ever After

Musings on Infertility, Adoption, Parenthood and Cancer

What’s in a Name?

“I want to name the baby after my father.”

This text was a complete surprise. About a month and a half into the adoption, the birth mother had asked us what names we were considering for the baby and we had shared our chosen name with her. We’ve been referring to him by name in conversations between us. I thought we were in agreement on this.

“The counselor says that I can name the baby and then you can change the name.” This is true, and I was trying to figure out why this felt so strange to me. I think it’s because it makes me feel like getting a puppy at the pound. The dog has a pound name, like Lucky or Lassie, and then you name it as part of the process of taking it home and making it yours. Not everyone renames, and certainly not an older pet that you adopt, but it still feels strange to me.

And yet.

This is her child. If this is something that she needs to do to show how much she loved him, than I support it. We support it. Tim and I started to talk this through and I asked her what her father’s name is. I laughed when I received the text. Oddly enough, it’s a name that I jokingly use as my husband’s middle name when he’s in trouble. (It’s not his actual middle name.) It’s a standing joke between us.

I didn’t answer her right away. We need to consider how we wanted to handle this. We just weren’t sure what the right answer or response was. We tested the name as a middle name with the first name we selected. Then inspiration struck: how about giving Baby H two middle names? Part of me likes this. This gives him something tangible from his birth mother, proof that she wanted to give him something as she gave him to us. The other part of me wonders what it will be like having so darn many names.

We proposed using it as a second middle name: our first name, her middle name, then our middle name. I don’t know. We don’t know if this is the right answer. To be honest, we’re still not entirely sure how we feel, but we proposed this to her as an option to see what she thinks.

“That has a nice ring to it, actually.”

If I’ve learned nothing else throughout this adoption, it is how little we are in control of the way things are going to play out. I’ve learned how to relax and be flexible. There is so much that we don’t know about this process that we need adapt to. It will be no different as we raise him. This will be new to all of us and we will all have to learn our way as we go.

Want to help us bring home baby h? 

Visit our youcaring page and make a donation. All proceeds will help cover the legal and adoption expenses. From now until February 28, you will receive an entry into a drawing for a 3 night stay at the Lake of the Ozarks for every $20 you donate.

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Please Don’t Think I’m Typical

My one fear with sharing our journey so publicly is that our story will be held up as the gold standard for infertiles. We will become THAT story: “I knew this couple that did IVF and had twins, and then someone just offered them a baby to adopt.”

There is so much more to the story. I started sharing my journey when we already knew we had a happy ending. No matter how this adoption ends, we still have our girls. We are so much luckier than most. A better googler than me could drown you in statistics on how many people simply can’t afford to try any treatments for their infertility. I don’t know how many people there are, but if I told you that’s it’s $300 for a prescription of pills just to try to get pregnant, I bet you would feel that pinch. If you knew that it was usually at least $2,000 per attempt at an IUI (i.e., the turkey baster method), I would guess that you can start to see how daunting it is to try to pursue treatments. And IVF…oh, IVF is between $15,000-$30,000, depending on your course of treatment if you are paying out of pocket.

And the success rate is not what you think. It’s specific to each couples’ issues, but the national average for success for IVF treatment hovers between 30-40%. I’ve had friends that were given less than a 10% chance of success. Not all couples who pursue adoption end up with a baby, either. I have friends with more than one failed adoption under their belt, and another attempt simply isn’t an option.

The reality is, most people simply never make it as far as we have. They are tapped out before they get there. We got lucky because insurance helped cover part of what we’ve gone through. Instead of being tapped out at the IUI phase, we were able to try IVF not once, but twice. And that extra round means that I now get wet sloppy kisses and baby hugs. There are countless other infertiles who still wish for those.

There were also hard conversations between my husband and me, decisions you face as an infertile. Are we willing to sell our home to finance treatments? How about selling a car? Can we work two jobs or three just to have a chance at an IUI or to try to save for adoption? People can and do go bankrupt trying to have or adopt a child. Once again, Tim and I got lucky–this was one area we were never in agreement on. I was willing to sell the house, I was willing to sell the car. No matter what, in my mind, the end of the journey had to involve a child. I do not think that I could have made peace with a childless life. And I have plenty of children in my life, tons of nieces and nephews I adore. I was willing to try almost anything, do anything. Me, who works in the financial industry, who has counseled others on how to make smart financial decisions, was willing to commit financial suicide in order to have a family.

Tim was not willing to go as far. These were the hardest arguments we had in the pursuit of a family. Arguments like this can break the strongest of couples. Once again, we are lucky that it didn’t come to that for us.

I also want to point out that adoptions do not typically fall out of trees or come via random texts. It usually takes a lot of time and patiently waiting to be selected. The agencies that we’ve worked with told me that Tim and I might take a little longer than most if we went through the agency matching process because we already have two children. A lot of the time, families without any children are picked first.

Once again, we got lucky, so incredibly lucky. But this is rare, random and so very wonderful. Do not for a moment think it’s typical. Most adoptions take at least a year, if not two or three, to be finalized. A lot of couples wait close to a year just to be selected by a birth mother.

Instead, as you think of our story, I want you to remember that we worked, we prayed, we sacrificed and most of all, we had help to get where we are. And for every story like ours, there are countless others out there that did not find their happy ending.

I challenge you to make a difference for all those whose stories you haven’t heard–those who have gone to sleep after crying themselves sick yet another night. If you want to make a difference, ask your employer to offer fertility coverage and adoption benefits, even if you don’t need them. Do it because it’s the right thing to do. Consider donating to an organization that helps finance infertility treatment or adoption. Speak up against personhood legislation that would outlaw infertility treatments. Take action to make someone else’s journey just a little easier. Help someone else grow their family. Be mindful in your questions to others.

And please, please, please do not offer our story up as an example. We aren’t typical. We are blessed beyond words to have found our rainbow babies. We can’t wait to add a son to our family. We are a family of four, soon to be five. We are so many things, but typical we are not.

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Canceled

I received an email from the counselor letting me know our birth mother had canceled her next visit with her. And then the counselor will be on vacation. Two weeks with no visits and the adoption is less than two months away. My heart sank and I texted Tim immediately. He quickly called me over his lunch hour so we could discuss it.

This could have been as simple as our birth mom not feeling up to it that day, but as possible parents, we weigh and measure every interaction with our birth mom to see if there is a sign she will change her mind. I promised that Tim and I would start talking about when, not if, we have Baby H home with us. This is harder to do than I thought.

We came into this adoption with scars from our previous losses. In our home, we have a closet that we can’t bear to open because it contains the mementos from our other babies. Babies that we didn’t name because that made the loss even more real. I regret that now. There are certain days that I will be in a funk because the memories just pile on–the dreams of what might have been: our due dates, meeting a child who is the age they would be now, seeing a set of identical toddler twin girls, the anniversaries of our miscarriages.

We both thought that we had healed from our losses, but little events like this bring those losses to the forefront. Should we be worried that she canceled? Have we done something wrong? At the end of the day, we want to make sure that we have done everything we can to reassure her that we want this child more than anything and will love him completely.

I can’t imagine the pressure to choose parents to raise your child. How do you know that you are picking the very best ones? I can’t promise that we will be the very best parents out there. I can only promise that we will try. We will work hard to raise him right. I know that we will love him completely.  We already do and he is not even here.

So I called. I spoke with her. I’m going to drive down after the girls’ bedtime this week so that I can go with her to her next doctor’s appointment. In an ideal world, Tim and I would both be there, but we can’t swing that. She and I are going to go out to lunch together and spend a little time getting to know one another better. We’ll have two visits instead of one this month. She needs to know that she is giving him to parents that will love him. She needs to feel comfortable with us. She deserves to learn more about us and what kind of parents we will be.

Baby H deserves this too. For our open adoption to work, we need to build a relationship that will last through the years. We need to make sure we have a common goal: doing what is right for Baby H. We need to be able to have comfortable and cozy visits throughout the years. We need to expand our hearts and our minds so that we can all become part of one big family for his sake. He deserves this.

For now, we’ll start one step at a time. Tim and I will both visit with her in two weeks to continue to build that bridge. We will take small steps that will help us lay the foundation for the rest of his life. I’m starting two baby books–one for us and one for him. I’m going to put pictures of his birth mom and family in one book for him. As he gets older, we can update and add pictures together throughout the years. I want him to have a place for pictures of us and his sisters, but also pictures of his birth family throughout the years. Hopefully, one baby book will turn into several.

And hopefully, canceled is just that. An inconvenient appointment, not a sign of something more.

 

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Tips and Tricks

There are little things we’ve stumbled on as we navigated the waters of infertility treatments and adoption–small changes we’ve been able to do that have helped us better afford trying to have children. If you are currently trying to finance treatment or adoption, maybe some of these will be new ways that will help you as you navigate.

Get a credit card with rewards. We used Southwest Airlines since our doctor was in another state. We used the Southwest credit card for every single payment for copays, groceries, etc. Then each month we would try to pay it off in full. This allowed us to charge as much as possible to get reward points, which we then used for airline tickets and gift cards. The Southwest card also lets you turn points into gift cards, which helped us when we had to cover daycare costs for twins. We charged daycare to the card each month and used our points for rewards at Walmart and Amazon to cover groceries and baby wipes. We’ve even continued to use those rewards to help us provide gift cards to our birth mom.

Know your insurance. This applies for both infertility treatments and adoption. Call, call and call some more. Ask for everything in writing and read all of the fine print. We had bills that were denied that we had to fight to get covered. We had to challenge to get out-of-network procedures covered as in-network. Do not accept the first answer. Read, research, and reach out for assistance. My first employer had a nurse advocate program that helped us navigate many of these issues. Knowing how you are covered and fighting the good fight can save you thousands. This also applies to adoption. Know exactly how the baby will be covered when it is born. How soon will coverage kick in? What happens if the adoption is disrupted? How much will you be expected to pay? This is a major expense in an infant adoption. Know how much you need to plan for. Also, talk to the hospital about using a payment plan.

Ask for coverage. My current employer does not offer coverage for infertility treatment. They announced they were doing an insurance review and I provided this letter from Resolve to our CEO and asked for them to consider coverage. They strongly considered it. Due to our size, the insurance plans would not allow it, but my answer was not an outright “no.” Infertility treatments can take years, so it’s worth it to ask for coverage starting the next year. When I asked them to consider adoption assistance instead with this package from the Dave Thomas Foundation, they added benefits. As one of my wise coworkers has said, “’No’ is the answer you already have. ‘Yes’ is the answer you can get.” Go get it.

Consider changing jobs. Ask your fertility clinic which employers offer infertility coverage. Review the Resolve website for a list of states that mandate infertility coverage and look for employers in your industry based out of that state. Before you accept any job, ask for detailed information on exactly what is covered in the medical plan to evaluate if the benefits are comparable to what you have. Ask friends to check their benefits at their companies. If you can get $30,000 in treatment coverage or $10,000 in adoption benefits, it might be worth a job change.

Track every last penny spent. If your medical expenses and travel-related expenses for medical treatments exceed 10% of your income, you can deduct some of those expenses. (Trust me, we’ve done this three years running.) Keep track of everything. If you aren’t sure, visit your insurance website and dowload all of your expenses for the year. Call each of your doctors and ask for a statement for the entire calendar year. Track down every receipt that you can. Then add them up and see if you can deduct. This holds true for adoption expenses, as well. State laws may vary slightly on what allowable expenses are, but keep track of every penny spent, both for your court finalization, and also for a possible adoption tax credit.

Loan, withdrawal, then distribution. Ideally, you won’t have to raid your retirement. But if you do, try to do a loan first, so that you are paying that money back and will still have retirement down the line. If you’ve already used that option, look into whether or not a hardship withdrawal is an option. Ideally, you would take this in a year when you know your medical expenses will exceed 10% of your income so that the early withdrawal penalty can possibly be waived. (Read the full IRS rules around this–I’m no tax expert.) The impact of taking a distribution is much bigger and this is only an option if you quit or change jobs. Use this as a complete last resort as it will deplete your retirement.

Negotiate your bills. The only one I’ve been able to do this successfully with is our cell phone/internet. Every six months, I have a chat with my provider and see if there is a new package that will save us money. We’re pretty bare bones, so there isn’t always savings, but the initial conversation saved me $40 a month, minimum. Also, consider ditching cable if you haven’t already. Amazon, Netflix or Hulu are viable alternatives that are much cheaper.

Libraries are your friend. Prior to infertility, I spent a lot of money on books. As soon as we were diagnosed, we began getting all of our books and movies through the library to save money for treatments. Find out how to preorder items online to get new releases. Work the system to get the books and movies you want. This can save you a lot on entertainment expenses.

Compare loan options. Tim and I contacted several places that offered adoption loans, and then on a whim, we also contacted our credit union. They offered both collateralized loans (if we had anything we could use) or home equity lines of credit at cheaper interest rates than the adoption loans we had looked into. What you can qualify for on loans can vary greatly, but don’t be afraid to shop around. The same is true for medical loans. If you have a hard time getting approved, the places that advertise for adoption loans or medical loans may be your best bet, but look at at least three of them. Compare rates, compare fees and compare how long they will let you repay on the loan.

Get your home study done right away! Our biggest roadblock has been our lack of a home study in the adoption process. We could only apply for one grant because we did not have a completed home study, which is the gold standard and a requirement for almost all grants. And even though we have our home study now, we don’t qualify for most of those, because the grant must be awarded before your adoption is finalized. Our adoption is simply moving too quickly for that. Do everything you can to get the work for the home study done as quickly as possible, so that you have more time to apply for grants.

I’m sure there are a million more tips and tricks out there if you are currently navigating these waters. Share yours! I would love to hear them.

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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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