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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Baby’s on his way – a Dad’s perspective

“Are you excited?”  My mom asked.  “Yes, but this time it feels different.” For us this pregnancy has only been five months.  We have been so busy working to make the adoption happen that the time has just flown by.  Between work, our girls, normal housework and upkeep, fund raising, trips to see our birth mother, getting our son’s room ready, and everyday life something feels lost, missing.  The awestruck wonder of becoming a parent, again?  Maybe it’s different because we know we can handle another baby?  Maybe its due to how rapidly this process of adoption has been moving along?  Maybe it’s that we have a game plan and are following it?  Could it be shear exhaustion? I paused and looked back at our journey to become parents and the year and a half since our girls were born.

Discovering that we were infertile and coming to terms with it was a painful and lonely process.  Most of our friends and family have children and did not have any issues doing so.  Understanding and true compassion seemed to be in short supply.   The ordeal seemed to alienate us from many of our friends and co-workers.  Until we opened up completely to our families and gave them day-by-day updates on our last pregnancy, they did not seem to be able to understand or relate.  Many of our friendships did not survive the process of getting our girls and the first year of their lives.  However, the fun we have as a family has replaced the nights of hanging out with friends and going to parties.  And we’re meeting new friends through the various mommy and parent groups that Nichole has joined.

When our girls were born numerous people commented to me that we could try again and have a son.  Several people seemed to pity me or be saddened that I have two girls and no boys.  This did not bother me as I love my girls more than I though possible.  It did, however, make me sad for the people making the comments. However, when I heard that baby H was going to be a boy, I was thrilled.  While I look forward to introducing my son to my interests and hobbies with the hope that at least some of them will resonate with him, I know he will be his own person.  Just as my girls are developing their own personalities, my son will be unique.  Someone that I will get to know and love as he grows.  I hope that he is able to introduce me to new interests and hobbies, that I will be able to discover a whole new world with him.  I do not want a “mini me”; rather a new piece of the puzzle to fit into our family creating a clearer and ever-developing picture of our future.

My friend John once told me, “Being a dad is the best thing in the world.  You come home and your kids stop what they’re doing, run over to you, and jump up and down singing, “Daddy’s home!, Daddy’s home!” at the top of their lungs while grinning ear to ear.  No one else has EVER reacted like that when I showed up at work, or anywhere else.”  I’ve seen his daughter Maddie and son Ryan do this on numerous occasions.  Until I became a dad, I thought John was just being funny. Now when I enter a room after being gone for a while, and my girls reach for me and shout “Da-da!” I know exactly what John meant.  It may be selfish, but I look forward to one more voice being added to the chorus.

They most common thing that I hear when people see my twins is, “Boy, you have your hands full!”  While this may be true, I have learned to adapt.  I have become quasi-ambidextrous,  plan several steps ahead for everything that I do, and encourage the girls to be independent and do as much on their own as possible.  It also helps that they are in the “it’s fun to help phase.”  Dealing with twins is not the exhausting ordeal that it used to be, it’s just the way it is, and we do quite well.  Adding another to the mix will be challenging, but not impossible.  While my hands may be full as I care for my girls my heart swells with love and pride every time they learn something new – a word, a task, figure out how to use something, or understand a question or request and respond in a positive way.  There is still more than enough room in my heart for another child.

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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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Ultrasound

The news of a last-minute ultrasound had us rushing west to visit our birth mother. I was so excited! Excitement about an ultrasound may seem normal to you, but in my world, the infertile world, ultrasounds were usually the source of despair and bad news, not good news.

I’ve had at least 100 ultrasounds, and I’m not exaggerating that number. You have ultrasounds with intrauterine insemination procedures to see how follicles are developing, you have ultrasounds to see if cysts are developing and if your cycle has to be canceled. You have ultrasounds three or four times per IVF cycle to see how you are responding to medicines. Those ultrasounds are tense as you wait with bated breath for “good” news. But it’s hard to quantify. Everyone responds so very differently and it’s hard to know if something is “good” news.

And then there are the ultrasounds that are branded in my mind. The ultrasounds when they tell you something is wrong, or you just know it is. When the doctor told us we were carrying mono/di twins and it would be a high-risk pregnancy, worry overcame the joy of finding out we were finally pregnant again. That ultrasound sent us scurrying to research TTTS (Twin-to-Twin Transfusion Syndrome). When they couldn’t find a heartbeat–any heartbeats–those two ultrasounds were branded in my mind. They do an ultrasound right before they do a D&C. It’s final confirmation that the pregnancy is over. That’s the ultrasound that quashes the unreasonable hope you’ve held dear.

When they thought we were losing our miracle babies, that was one of the worst ultrasounds of my life. The ultrasound tech was unskilled and it took over an hour to find out just a few key pieces of information. I thought Tim was going to whip the wand out of her hand and do it himself. He did end up telling her how to measure the fluid and find the key items to confirm if the pregnancy was possibly still viable. Him being there kept me sane as I endured a very uncomfortable ultrasound on one of the worst days.

I realize if I looked at my ultrasounds objectively, calculated and added them all up, I’ve actually had far more good or benign ultrasounds than bad. But infertility has made me an obsessive worrier. With all of the complications we had in our successful pregnancy, ultrasounds were a constant source of anxiety. I couldn’t breath until they checked everything off this list. They were worried about the fluid level around the babies, they were concerned about the constant bleeding and they continued to make sure a placenta had not torn further. And a lot of it was simply my anxiety. Each ultrasound felt like a judgement on whether or not my girls would make it. For so long, the doctors would say “We’re just going to take this day by day. It’s too early to say how this pregnancy will turn out.”

This ultrasound was different.

Maybe it’s me. Maybe I’m simply less afraid. I know he’s in a body that is more equipped to carry him. And the pregnancy is going well. It’s so far along. Whatever it is, I could not have been more excited about this ultrasound.

Getting us all in the room? Well, that was a bit like watching the Three Stooges. No one was available to watch the girls, so we had twin toddlers, the two of us, the birth mother and the ultrasound tech crammed into a space really meant for three people. We were juggling blankies, sippies, squiggly toddlers and a very pregnant birth mom. It was a ridiculous amount of work just to get us all situated in the room.

1-Hand 1-Foot

And then we got to see him. Wiggling and moving. So gloriously wonderful! He was waving his hands and his lips were puckered up. It looked to us as if he was blowing us a kiss. I got to see him kick and move. He kicked so hard the birth mother’s stomach jumped! It was wonderful. There was a little sadness too, that I’m not the one who gets to feel him grow, but those feelings faded as I got to see him on the ultrasound. Perfect little fingers, perfect little toes, the spine, the face, the head. Everything was perfect. He will be perfect. He will be ours. I’m so glad that we were able to get this glimpse before he arrives. It helps make it even more real, it helps how close we are TO HAVING A BABY sink in.

We’re having a baby in mere weeks! There is so much we have to do!!!!! Cue the panic.

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