Cancer Ever After

Musings on Infertility, Adoption, Parenthood and Cancer

Which is worse? Cancer or Infertility?

One study of 200 couples seen consecutively at a fertility clinic, found that half of the women and 15% of the men said that infertility was the most upsetting experience of their lives. Another study of 488 American women who filled out a standard psychological questionnaire before undergoing a stress reduction program concluded that women with infertility felt as anxious or depressed as those diagnosed with cancer, hypertension, or recovering from a heart attack. – Harvard Health

I heard many sentiments similar to the study above when we attended support groups for infertility, but I’ll admit, it seemed hard to believe. I’m here to tell you it’s the truth, at least for me.  Some of this may simply be a matter of what came first.  Infertility was the first battle this type A could not finagle her way around, or circumvent.  It took all of my strength, research abilities and resources to find our family.  I couldn’t stop the miscarriages, I couldn’t make myself get pregnant.  

The impact that had on my life, my friendships, my family relationships is hard to quantify.  The experience forever changed me, and changed the very core of who I am.

Cancer is quickly shaping up to be  the same.  Yet, it’s a little easier. I’m familiar with not being in control. I’m familiar with pouring through medical research. I’m familiar with peppering doctors with questions and researching side-effects of drugs.

So far, cancer treatments are also easier than infertility treatments were- in terms of quantity:  it’s fewer doctor appointments, fewer heartbreaks, fewer disappointments and far less money.   That’s right folks, cancer is going to cost me about 1/5 of what our adoption did, and about 1/10 of what it took to get our girls. This is part of why cancer is not as stressful.  So far, we aren’t worried about having to sell our house, having to sell a car, having to make some really tough choices.

And yet, this may change.  Right now the path seems straight forward with cancer. Finish the treatments, kill the cancer. And yet, it doesn’t always work that way.  If my PET scan shows activity in the next couple of week, I may retract these words, but for now Infertility is far worse than cancer has been. Even with the horrible side-effects from cancer. Because I can tell myself they are temporary.

Statistics are on my side.  For infertile couple the national success rate for IVF hovers around 40%, the clinic we ended up at was closer to 60%.  The chance my doctor quoted of me surviving this cancer is 97.5%.  I’ll take those odds.

What makes infertility so much harder than cancer?

Almost everyone is supportive when you have cancer.  It seems like everyone knows someone who had cancer, they are familiar with chemo and radiation and they offer to help. There are also far more resources for people who have cancer. Livestrong, Cleaningforareason, Susan G. Koman. Cancer is an ugly, terrible disease that impacts far too many.  And everyone has rallied to find a way to cure it.

These same voices were silent for the most part as we underwent infertility treatments, or even when I was on bed rest through my pregnancy.  Not once, did someone say, “When can I bring you dinner?” “Why don’t I help you mow the yard.” I went to the doctor 3-4 times a week, constantly had shots and mood-altering medicine and most treated it as if I was just having a lot of sex.  That couldn’t be further from the truth.

Infertility is clinical, invasive, painful and involves a ridiculous amount of needles.  Some of it is simply unfamiliarity.  Infertility is not spoken of as often, it’s often treated as a source of shame or blame. It took our families a long time to see  the strain infertility put on us emotionally and financially.  When I was on bed rest, it simply didn’t occur to people that my husband was visiting me every morning and evening and still taking care of the dog, the house, cooking meals (so I would eat) and getting the nursery ready.  Very few came forth to help during that time. I was on bed rest for five months, and few visitors darkened our doors.

You get far fewer offensive sentiments offered to you. “If God wanted you to have a baby, you’d have one.” This one riles me the most, it implies that God is punitive.  That he deliberately chose me to lose three babies because of something I’ve done.  I don’t believe that. Others simply share stories of people that kept trying and one day got their miracle baby.  It does happen, it depends on the root cause of the infertility.  As I’ve said before infertility is not the same thing as sterility, there is a small possibility.  7% of infertile couples who forgo treatments do get pregnant on their own.  Yet no one felt the need to share the stories of the other 93% who weren’t able to get pregnant without help.  Their stories are far greater and yet they were silenced by lack of support and heartache.

It’s just a matter of life and death. This one may seem strange, but because I don’t feel like I’m dying, I’m simply not worried about it. With infertility it was my entire future at stake, it was my hopes and dreams. I worried every second of every day, that I would not find a way to have children.

While I have no plans to leave my husband and children behind, if treatment doesn’t go as planned, I can find contentment in the fact that I have a husband and children who will survive me. My greatest hopes and dreams are part of my life each and every day.  They are the reason I fight, they are the reason I will win.  If my family is my reason for living, imagine not having that taken from you.  That is why infertility is worse. It takes away the life you dream of.  It robs you of your joy.  Cancer can’t do that- not to me.  I have too many blessing in my life to be thankful for.  My children remind me to smile and have fun even as I go “blech.”

 

 

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What Cancer Stole From Me

You have to remember, I’m coming at this backwards from a lot of young men, women and children who are diagnosed with cancer. For far too many, cancer steals their dream of a family, their ability to have children. For someone who is young and diagnosed with cancer, they are often told there isn’t time to preserve their ability to have a family in the future.

Cancer couldn’t steal that from me.

I am already infertile. I’ve already fought that war, and I’m so blessed to have three amazing children to show for it.
Cancer also shows you that you are mortal. It steals the illusion that you will live forever. It adds a paranoia about your health, worries about cancer coming back, fear about developing a complication. It changes your expectation from living into your 80s or 90s into one (once you survive) of living into your 50s or 60s.

Cancer couldn’t steal that from me.

I have an autoimmune condition that contributions to my infertility, and is quite possibly to blame for me getting cancer. For now, I’m diagnosed as MCTD (mixed connective tissue disorder), but my rheumatologist really believes it’s lupus, even though I don’t meet the clinical criteria. I have no illusions about a life without health complications, because for the last six years, my health has been nothing BUT a series of complications. This is the reason they think my liver failed in pregnancy. It’s why no additional pregnancies are recommended for me.
I’ve poured over the scholarly articles. I’ve read the statistics. My mortality has been shoved in my face for several years now.
Tim’s and my reaction to the cancer diagnosis was shock, followed by “of course, it’s cancer.” That’s just the world we live in. I’m the 2%, medically speaking. I thought my one advantage coming into this battle is that there wasn’t much more that cancer could steal from me.

I was wrong.

Tim and I were in the process of donating our frozen embryos and the process takes a little over a year. We started the process the month Baby H was born because we knew our family was complete, and even if we decided down the road it wasn’t, my body could not sustain another pregnancy. We both wanted to donate our embryos to another couple.

We’ve gone down both paths in this infertility journey: IVF and adoption. We know the heartbreak of loss and we know how much you can love a child who comes to you as a gift from another. Those embryos represent hope for another couple, a chance for someone else to find their family. They are the dream of something more–that one of those embryos could become someone’s sought-after child.

 Cancer stole that from me, and it breaks my heart.

Cancer also took that hope from somebody else and they don’t even know it. One or maybe two couples could have had a chance to find their family.
Our fertility clinic notified us today that we are no longer eligible to donate our embryos. The logical part of me understands. My type of cancer has a genetic component, and, combined with my autoimmune disorder (which is sometimes genetically related), the clinic can’t broker an embryo adoption in which a couple may end up with a child with a possible known genetic condition. If I were looking to adopt an embryo, I wouldn’t take that chance.
My heart is an entirely different matter. I’m sad, angry and whole host of other emotions I can’t even describe. I mourn the loss of hope and want to rage at cancer for taking this from me, from us, from those possible parents-to-be.

 

 

 

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Why Don’t You Just Adopt?

Five little words that hit you like a bullet. They hurt you on so many different levels when you are infertile.

“Why don’t you just adopt?”

Condescending, well-meaning, full of ignorance, so incredibly naive…These words are loaded, and, while I truly believe that everyone who ever uttered them to me was well-meaning, these words hurt when you are infertile. I also believe that they ignore the most central part of any adoption: the child.

“Why don’t you just adopt?”

I hope you’ve learned as we’ve gone through this process that there is no such thing as “just” adopting. Adoption is not easy, it is not simple, and it’s certainly not cheap. We have one of the most streamlined adoptions that I’ve ever heard of, and ours is still complicated, exhausting and difficult. There is no such thing as “just adopting.”

And, as an infertile, you have to be screened more in order to prove that you have healed from the grievous wounds that infertility has inevitably made on your psyche. It still gets me that when we looked into adoption before we had any children, roadblock after roadblock were thrown in front of us: “A one-year wait is required after ending fertility treatments.” “We would require that you undergo physiological evaluation and counseling prior to adopting because you are infertile.”

The real wound behind these five little words is they imply that you haven’t even considered adoption as an option. It’s an option that I think every infertile considers at different points along their path. We considered and reviewed it several times, and our views on adoption changed throughout our journey.

The one view that never changed was that we had to KNOW beyond a shadow of a doubt that being adoptive parents would be in the best interest of the child. Infertility gave us oodles of time to contemplate and quantify exactly why we wanted to be parents. We knew exactly how far we were willing to go in pursuit of a child, something that most people never consider. Adoption is not the magical solution to a problem and adoptive children are not a consolation prize. They are THE PRIZE.

For us, we had to reach a point when we knew, beyond a shadow of a doubt, that adoption was THE answer. And it had to be the right answer. When we received that text offering us a child to adopt, we each only had one word in reply: “YES!”  That’s what made us know that this was our answer – the only one we needed.

We never doubted at any point that we could love a child who wasn’t born of our bodies. We doubted that we could withstand the journey to get him or her. Adoption is a long and arduous path. It’s emotional and it can be draining. And if you are infertile, you may be starting this trek when you are already low on reserves. You’ve been dealt emotional blows; physically you may have gone through exhaustive treatments. An oft-quoted study in the infertility world shows that infertility patients undergo the same level of emotional stress as HIV or cancer patients. Imagine the gravity of the stress you would be in, and then apply that to making a decision that will forever alter the life of a child. It’s not to be taken lightly.

Adoption is also expensive. That was another one of our hesitations.  With adoption, the majority of the money is paid before you ever know for sure that you are going to have the child. Relinquishment is one of the final steps, well after all legal and adoption fees are incurred. It’s a bet. It’s a gamble. It requires a leap of faith. Once again, you have to know that you are willing to pour all of your money and resources into something that may not pan out. You can spend every last dime you have and still not have a baby. One of my friends described the difference between international and domestic adoption very well:

“In international adoption, you pretty much never get an infant. If you’re lucky, you bring home a 6-month-old. But in an international adoption, you pick a number and stand in line. You know that you will have a baby in the end, you just have to be patient and wait your turn. It could take one year or it could take three.

“Domestic adoption is different. You can get a newborn, but you also take the risk that you will make it to the end and go home empty-handed–or that you won’t be selected for a baby in the first place.”

I’ll be honest. I don’t know that we could have stayed the course in this adoption–that we would have remained as calm–if we didn’t already have other children. I know the little pregnancy scares we’ve encountered these last few weeks would have given me a heart attack if I hadn’t had a very complicated, but successful, pregnancy of my own. Hearing that our birth mother’s mucus plug fell out at 30 weeks or that she is in the hospital and they are monitoring the contractions at 34 weeks is not for the uninitiated–trust me.

And then there is the most central part of any adoption: the child. We have taken every step and evaluated every option with the child in mind. Often, when we’ve mentioned the complicated and expensive process of adoption, people say, “But you can adopt from foster care.”

That isn’t a simple answer, either. Every child deserves a parent who loves them fully, who is prepared to learn and grow and be the parent he or she needs. Not everyone is prepared to parent someone who may have special emotional needs or medical needs. This is often the case with foster care. Tim and I considered this very carefully and we were never able to say that we knew we could be the right parents for a child or children from foster care. We don’t know that we are cut out to be foster parents and adopt through that system.

Maybe this will change someday, but until we know this, until that day, those children deserve better. Personally, I feel like a child with additional emotional needs would benefit from a parent who is staying at home with them. Me being a stay-at-home mom was our original plan when we started trying for a family years ago, but we have loans now that we took out to get our girls. Staying home is no longer an option.

And, finally, we get to my other pet peeve about adoption. Think about Angelina Jolie for a moment and her children. How often do you hear people refer to her “real” children and her “adoptive” children? Our son and every child of adoption deserves to be accepted fully. There is no line drawn between “real” and “adoptive.” This child is not a second-class citizen, and there will be no qualifier when we introduce him to others.

If you don’t know that you will simply see this child as your child, then you are not ready to adopt. If you don’t believe you can withstand the process of adoption–the emotional rollercoaster–and emerge as an emotionally healthy parent, then now is not the time to adopt.

That is why “just adopting” is not an answer to an infertile couple. It has to be about what is right for the child, not what’s cheap, perceived to be easy, or socially acceptable. It’s a big committment of time and emotional and financial resources. You have to be ready to commit fully to enter the process. And there will be times when you question if you are doing the right thing. You have to have the reserves to make it through the doubt.

Every infertile couple is different in their journey. I know couples that have gone immediately to adoption, and I know others who knew it would never be the right fit. Unfortunately, I also know others who have tried, and failed, to bring home a child and have no additional resources–emotional or financial–to try again.

I would compare considering adoption versus infertility treatments to determining the course of treatment for cancer. You know whatever decision you make will impact the rest of your life. You have to carefully weigh the options, risks, and benefits and determine what gives you the best chance of a successful outcome.

And it’s not a static answer.

Sometimes, one little thing happens that tips the scale. My crappy liver, even crappier immune system and overall health issues made a pregnancy in my body a path we weren’t willing to go down. The scale tipped. Risks from another pregnancy were greater than the chance of an adoption falling through. The cost of the adoption didn’t seem so bad when weighed against possibily losing five months of income again and paying for more treatments. In other words, our perspective changed. Adoption became THE answer.

And this child will be our son, but make no mistake: we are not “just adopting.” We are blessed to have this opportunity to adopt. We are so lucky to be able to have a son and third child. He will never be an afterthought or a consolation prize.

So please, don’t say we “just adopted.”

Want to support our adoption? Help share our story, or consider making a donation to our youcaring page.

 Baby H will be home soon!

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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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Curveball

“I want you to be in the room with me during the birth.”

This may surprise you, but my first reaction was total panic. I have no idea what happens during labor! Hell, I barely understand what happens in a normal pregnancy. My pregnancy consisted almost entirely of morning-till-night puking and then months of left-side leaning.

Despite all of the complications, it was actually my water breaking that determined when my girls made their entrance into this world. And then, after being reassured that it was very unlikely I would go into labor and having my c-section scheduled for four hours later, my contractions started. I (who hadn’t had a single Braxton Hicks contraction during my entire pregnancy) went into full-blown labor immediately with contractions less than two minutes apart. My scheduled c-section quickly turned into an emergency one. From there, I only remember a few things: Hazel’s first cry, Phoebe’s first cry and seeing my girls for the first time before they were whisked to the NICU. I vaguely remember urging my husband to go with them to make sure they were okay. The last thing I remember is the two surgeons calling for a third because there were complications.

When I woke up, they wheeled me into the NICU to see my babies. And then nothing else mattered.

As you can see, this experience has in no way prepared me for a normal labor and delivery. I don’t know what someone goes through or what I should do as I’m by her side. At the same time, being there with her and seeing my son born will be one of the most amazing experiences of my life.

Once I let the idea sink it, I became overwhelmed at the possibility and realized I couldn’t be more honored. That is such a personal moment and it’s amazing that I will get to be there when our son takes his first breath. The only shadow is that my husband can’t be there, too. He would love to, and, since he works in the medical field, is probably the wiser choice. But, well, he IS a guy. I get it. If I had my choice, the 26 doctors and nurses in the room with me would have all have been women.

I once compared this pregnancy to my pregnancy and said that this felt more like a “real” pregnancy to me in a lot of ways. This is still true. I just never expected labor and delivery to be one of the things that made this a more “normal” pregnancy. When we began considering adoption (prior to having our girls), I wondered if I would be missing out on the experience of a pregnancy. I now see that there are so many versions of what a pregnancy is like. I think infertiles rarely get the storybook version. If I’m able to be there through the delivery, this pregnancy will be far more like the one I always thought I would have.

So if you are considering adoption or surrogacy and are afraid you will miss out on the pregnancy experience, take heart. A surrogate can include you in her pregnancy and you will have your very own pregnancy experience. A birth mom can do the same. And also keep in mind that the vision you’ve built up in your mind may not happen in any of the scenarios. No matter the path, there is always one thing that will surpass your expectations: your child.

The path we’ve traveled opened us to the possibility of adoption. That’s what made our hearts scream yes, when every practical fiber in our bodies cautioned no. It’s also taught us to listen to our hearts. In the end, this journey will bring us to our son. It may be unexpected, it may not happen exactly as we envision, but I have no doubt that he will surpass every one of our expectations.

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