Cancer Ever After

Musings on Infertility, Adoption, Parenthood and Cancer

Unfair

My last post was a little more controversial than I realized. I was asked pretty directly if I thought it was fair to compare infertility to cancer.  For me, yes.  Infertility shaped how I experience and deal with cancer.  Yet, I also know that my journey with cancer is not everyone’s.  My prognosis is positive – this isn’t the case for everyone.  My treatment doesn’t involve hospital stays or blood transfusions – that is the norm for many.  It will take me about 8 months total to beat this, some people fight for years. Others have metastatic cancer or untreatable cancers that fight daily, just for the right to live another day.

I don’t believe our fights are the same at all.  I do think that infertility has made this battle easier for me than it would have been if it was the first major obstacle in my life.  I used to pass out every time blood was taken.  They stop taking the vials if you do this, which made this an obstacle to building my family. This was unacceptable, so I overcame this fear. So much so, that I even survived them taking 19 vials of my blood.

My husband and I gave up dinners out, cable, and quite frankly lost a few friends during the infertility war, because we weren’t a whole lot of fun to be around. We couldn’t go out to dinner, said no to activities and trips so that we could pay for treatments. I gave up drinking on the advice of my doctors, gave up soda, worked out twice a day.  Infertility consumed all of our time and resources and we didn’t have a lot of emotional reserves.

You would think this all changed when we had our girls, our miracles. It did, I’ve never been happier, but trust me, the first year with newborn twins is rough.  We didn’t leave our house for non-essentials for at least 9 months.  I burned every meal I attempted to cook for the first six months. Hell, I’m lucky I managed to keep my job on the 2 hrs of sleep I was getting a night in a series of short 20 minute naps.

Just when the girls started sleeping, we were blessed with the chance to adopt. The chance to adopt with an amazing whirlwind, but kept us in the same state.We would work late into the night on fundraisers for the adoption.  Our reasons for not sleeping and scraping by changed, but the overall state of our lives wasn’t really different.

I’ve had two surgeries as part of this cancer, but I’ve also had 7 surgeries in the last five years- what was two more? My overall health issues, have helped me have perspective for this journey and our current lifestyle has made this an easier transition than I would have guess.

For me, being told that I need to stay home because I’m neutropenic and my white blood cells aren’t high enough to fight off an infection; doesn’t really change my life a whole lot. A lot of what I hear in my support group, just doesn’t apply because it was already stripped away from me throughout the last five years.  I guess, it’s just not the same shock to the system.

Don’t get me wrong, the thought that I could not be hear to see my children grow, to finally have time to just enjoy being married to my husband tears me apart, but infertility and adoption have taught me that sometimes you just have to have faith.  Sometimes you are not the one in control and I can only focus on the things within my control. Infertility gave me experience reading the medical studies and interpreting them to make sure I can advocate for myself, but my time in treatment also gave me ability to know when to stop googling.

Our adoption was a leap of faith, and so is this journey.  I have to believe in my team of doctors. I have to have faith that the treatment will work. I have to acknowledge this is out of my hands and focus on what’s in my control- how I manage the day-to-day and how I make sure I’m there for my children and my family. There is a higher power at work here.

Mostly, I just believe that I will beat this.  Dying is simply not an option, I have far too much to live for. So I will do what I’m told, I will work to manage my side-effects and I will arrange my days so that I have energy at the most important times – morning time and bedtime. Because that is what matters.  Time with my family. It reinvigorates me, gives me a reason to laugh and reminds me just how much I am loved.

 

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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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Questions

There are two questions I’ve been asked recently that threw me for a loop.  The first, had me actually doubling over in a fit of laughter, as I attempted to answer.

“You do know what causes that don’t you?”

This question accompanied a gesture toward my three very rambunctious children.  I was tempted to show the scars on my arms from the numerous shots and bloodwork that accompanied each attempt to have a child.  This scar tissue presents a problem in accessing my veins these days.

There are also the scars that don’t show.  The losses, the cumulative effect of three pregnancies in three years.  The fear of being able to carry to term, the worry that our adoption would fall through.  The sadness over not having a “normal” pregnancy. Grief at not having a “normal” birth experience.

I was tempted to show my latest budget as we continue to pay the bills that brought us these three wonders.  My retirement is decimated, we refinanced the car.

Instead, I doubled over in laughter, shook my head and said, “You have no idea what causes this.”  The gentleman looked at my strangely and walked off.

These days, I don’t have the time or energy to educate on infertility, which I would have done in the past.  My life is too blissfully full. I just love that you can’t tell when you look at our family all that came before. We look fertile. We look blissfully normal.

Which leads me to the other question.

Is he yours?

So far, I’ve only been asked this once and I thought I was prepared for when the day would come.  Because we fundraised for our adoption, pretty much everyone we interact with knows our son is adopted.  I don’t mention it to strangers, because it doesn’t matter. He is my son, and saying adopted son feels like a qualifier.  It will be part of his story and he will have his own thoughts on the matter as he grows, but I will not introduce him as adopted.

I have, through the course of work, met a couple people who mentioned they had adopted and then I’ll share, but it’s personal and it’s at my discretion.

My son doesn’t look like me.  I have blue eyes, the palest skin you’ll ever see, and surprisingly, still have some hair.  It’s blondish-brown. He has a warm, olive complexion, and the cutest brown curly hair you’ve ever seen with dancing brown eyes.

I’m sure this is what spurred the question.  But there are so many better ways to ask.  “How old is your son?” (and then let me correct).”What’s your son’s name?” Assume he is and let me say otherwise.

There is a final question, I get these days as it’s becoming more apparent that I am sick. “How do you do it all?” There is no magic to it.  I just take it one day at a time.

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There’s Fire?

6 days prior to the scheduled induction

I woke up in a strange bed with the sound of familiar barking ringing in my ears. It took a moment to orient myself, but the events of the prior evening came rushing back to me. The labor that stopped. Was the baby coming today? Tomorrow? We were about two weeks from the official due date, so the false labor may or may not have been a sign of things to come.

First things first: Tim and I needed to decide our plan of action. Since today was a Friday, we decided to leave our girls with the in-laws and stay near the birth mom. My mother was still out of town and we didn’t want to chance heading home just to turn back around.

That decided, we texted our birth mother and arranged to visit. The poor girl was miserable. She was at that point of pregnancy when sleeping, walking, eating, breathing, everything was difficult and/or painful. She was ready for the baby to be out TODAY.

We were on board with that. Early isn’t ideal, but she was 38 weeks at that point, so it wouldn’t be the worst thing. Over the next three days we walked with her, bought her spicy food, and helped her swing at the park, all in the hopes that she would go into labor on her own. No dice.

5 days prior to induction

By Sunday, we’d determined that Baby H wasn’t going to come out until the induction. While we all wanted him to come on his own, it just didn’t look likely. Tim had used his meager vacation time with the girls’ illnesses and I needed to save mine for parental leave. We had to go back, even if it meant that we just turned right back around if and when labor began.

Mainly this was because we really missed our girls. We had never been away from them for this long. I physically ached being away from them and FaceTime just wasn’t cutting it. Phoebe looked miserable and confused when we FaceTimed with her and it was breaking my heart. I needed to hold my babies.

And yet, I couldn’t wait to hold all of my babies.

4 days prior to induction

The other reason I was grateful that we came back was that I had only hired my replacement at work the week before. The poor girl had mere days of somewhat distracted training on key items. I hadn’t met with the teammates that would be taking over my other responsibilities while I was on leave.

I went in to the office in the wee hours of the morning, prepped file after file, and then conducted a brutal day of client handoff meetings. I was frantic to make sure everyone know what needed to be done while I was out on leave. These extra few days would make this possible.

3 days prior to induction

I received a text: “Doctor has decided to induce a day early.” I laughed when I received the text. That was the day we had been lobbying for all along. A Wednesday induction worked a lot better with regard to getting the necessary court order to release Baby H into our custody.

I called Tim and we quickly modified our plans to get there early. We were so ready.

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Where There’s Smoke

7 days prior to our scheduled induction date

In retrospect, I wonder if I somehow knew that something was going to happen. We’d been talking to our birth mother all week and she had definitely reached that point of pregnancy where absolutely everything hurt, sleeping was impossible, and she was begging for the baby to come out. I’m known for letting the battery run dead on my cell phone and I rarely have the ringer turned on because, well, twin toddlers. But this evening, I made a point to plug in the phone and turn the ringer up as high as it would go so that I would be sure to wake up if needed. We were nearing the end, and I read once that most labors start at night because that’s when babies are most active.

The call came at 1:30 a.m.

Our birth mother was in tears and said, “The pains are bad and I need to go to the hospital NOW–I think the baby is coming.”

I shot out of bed immediately and woke Tim up (quite possibly with an elbow to the kidney–oops!). I tried to stay calm and talk her through our plan of action.

“Do you have a bag packed?”

“How far apart are the contractions?”

”How long are they lasting?”

“Do you think you could eat something before you go to the hospital, because they won’t allow you any food after that.”

I promised to make sure her ride was there shortly and we hung up.

Of course it would be now. My mother had been coordinating all of the travel for our birth mother since she lives closer, but Mom was on a humanitarian aid trip to Panama–the first she’d ever been on. And now this.

We had a plan A, B and C for a ride in case this happened. Luckily, Plan A answered her phone immediately and said she could be there in 10 minutes. I called our birth mother back to let her know.

HOLY COW! We’re going to have a baby! I started to get super-excited! You’ve probably realized by now that I’m an over-organizer. All week, Tim and I had been packing “go-bags.” We had our master packing list for the girls that we lived by after our disastrous “no pack-n-play” trip and had packed their suitcases the night before. We had packed Baby H’s bag earlier in the week. We just hadn’t got around to packing ours. That was on the agenda for tomorrow.

My adrenaline was pumping. We frantically packed our bag and began calling people to see who could come over to stay with the girls. Since we were planning on an induction, most of our conversations with my husband’s family had involved them coming over to get them. Apparently, we failed to stress that a late-night phone call was a possibility. We called six cell phones and two home phones with no luck.

At this point it was 2 a.m. Our options were limited. Try to put the girls in their car seats and figure out childcare when we got there? Try to find someone else? Luckily, a friend had volunteered to be our late night call just one week before and I cockily stated, “My in-laws will take care of that.” But my friend had young children, so she was used to waking up in the middle of the night. I called her cell phone–no answer. I called her husband’s cell phone–pay dirt!

It’s the sign of a really good friend that she was there in fifteen minutes. We finished packing, grabbed the dog, and headed out the door. It’s a four hour drive to the hospital where she was going to give birth. Let’s just say we made it a little faster than that. Throughout the drive, we received text updates.

“Contractions are two minutes apart…”

“Now they are three minutes apart.”

We stopped at my mom’s house to drop off the dog and pick up the car seat for Baby H. In our rush, we forgot to call my stepdad and let him know we were stopping by. As it turned out, neither of us had his cell number (he and Mom don’t have a home number anymore). So we killed the headlights, crept slowly up the drive, and Tim quietly went into the house to retrieve the car seat after letting the dog out in the yard. After a few minutes, he was back with the car seat, and a little shaken up. We weren’t as stealthy as we thought, and Tim was met at the front door by my stepdad and his pistol. We now both have his number programmed into our phones!

Tim threw the car seat into the car and we were off to the hospital. Just as we pulled out of my mom’s driveway, we received a text saying: “Dilated to a four, but contractions are not progressing. They are sending her home.” Our driver for our birth mother was understandably freaked about driving 30 miles with her back to her house, but did it anyway.

We looked at each other, turned around, and crawled into bed at my mom’s house. We’d figure out things in the morning.

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