Cancer Ever After

Musings on Infertility, Adoption, Parenthood and Cancer

“Mommy are you tired?”

My heart broke the first time I heard these words from one of my children. Even though the surgeries have been small, they’ve taken their toll. I’ve been tired, been under lift restrictions (no more than 10 pounds), and on some days, been simply wiped in the evening when I normally play with the kids.

This won’t be the last time I hear this, but hearing it for the first made me want to cry. We were simply sitting at breakfast, doing our normal morning routine of laughter and chaos. I wasn’t doing anything out of the ordinary. I think H was asking to gauge my mood for the day. When I said, “No, Mommy isn’t tired,” she gave me the biggest smile.

I know that I’ve been more short-tempered in the evening. Two-year-olds can be trying on a good day. Potty-training twin two-year-olds while going through a cancer diagnosis has proven to be trying on both my husband and me. Would we have been this irritable and lose our cool this often without all of the medical mumbo-jumbo going on? I’d like to think no, but it’s hard to say how much cancer is changing our parenting and personalities.

H has noticed the most. She’s my watcher and observes everything. She asks questions obsessively to see if there is going to be a change in our routine. “Mommy go doctor again?”, “Mommy still have owie?”, “Mommy hurt?”, “Mommy not happy?”

We’ve already began to notice some behavioral changes over the past week. H has been solid on the potty-training for a while and though that still seems to be going well, she’s just more clingy. She keeps asking to be rocked and held. She now holds back and stays next to me when I do drop-off at daycare instead of running to her friends. Normally, I would assume she was sick, but we aren’t seeing any signs of that. We think she just senses a change is in the air and needs reassurance.

Baby H struggles with Mommy not always being able to hold him. And hitting my port constantly. He’s learning to walk and if I’m not ever-vigilant, he will, without fail, hurl himself hands-first on my port and I can’t help but yelp in pain (which confuses him and often makes him cry). Luckily, the scar is healing and this is no longer excruciating.

Outside of dying, these changes are my biggest fear. I fear not being the parent I want to be because I’m simply out of reserves. I can’t wait to get my first chemo session under my belt so that I can figure out how we make my treatment seem seamless to the kids while using friends and families to distract them from the normal things Mommy isn’t doing that day.

I know they are resilient and I take comfort in the fact that they are too young to remember me going through this, but I’m their mom. I worry.

 

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Unprepared

There has been one aspect of this adoption that I haven’t delved deeply into during my posts, not because it’s unimportant, but because it is so very important. Race. This is a transracial adoption. We are adopting this baby knowing that someday he will face reactions and discrimination that we have never experienced personally. He will have a view of the world that we will never fully understand or share.

That’s the tough part. I’m not naive. I know discrimination is real. We live two miles from Missouri and Ferguson could easily be in our backyard. I’ve seen the youtube video of the father whose adopted daughter was bullied because of her race, and I bawled my eyes out on her behalf. I saw myself in his shoes some day, and I can only hope I handle it with the grace and aplomb that he did.

I have biracial nieces and nephews. I have friends who have been called “the token Asian,” or something else jokingly, yet in a not-so-funny way, most of their lives. We live in a world that notices race. Our son will not look like us and this will be a reality of his life, for his entire life. People will undoubtedly make rude comments in public before he can even understand them, and that won’t change. It will be obvious he is adopted.

To learn how to handle this, we’re taking classes and we’re talking through scenarios to think of how we will handle things when they happen. Because we know that something will. The middle school years will likely be the hardest. Or will it be high school? Growing up as a young, black male in a predominantly white neighborhood and school will have its own challenges. And there are nights that this keeps me up. How will the world treat him? How can we protect him? What do we need to teach him? How do we equip him for the world?

Just like being adopted, his race is part of who he is: an important part. But neither one of those factors are the sum total of who he is or will be. It will be our job to guide him as he assimilates these pieces into the whole of who he will become. I think both factors will shape him and his view of the world, but events do that, too. As parents, we will be a strong influence. How we raise him, how we love him, the example that we provide–that will shape him as well.

Tim and I have had to realize that we will have to learn as we go on this. We can study and talk to others to get general ideas of issues that we may run into, but we will never be fully prepared. I don’t know what I would do if my son were bullied the way that girl was in the video. But as I watched it, I, sadly, wasn’t surprised by the way the teenagers acted. I know that this type of treatment exists in the world. And I also know that I won’t be able to wrap my son or daughters in cotton. They may be bullied, they may be teased. It could be because they wear glasses, have out-of-fashion clothes, are too tall, are too short, are adopted, or because of their race. I can’t control what others do. What we can focus on is how we will support our children when these things happen.

We shape how they internalize what others say to them. This is what I need to focus on. I need to help him handle the negativity that may come his way. Tim and I need to be prepared to talk through these things if and when they happen. We need a plan of action to handle rude comments in public. We need to be able to maintain our cool like the guy in the video when faced with assholes who discriminate.

This is our son. Period. We will learn and grow as we need to in order to be the parents he needs. That is our vow. That is our promise.

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On Miscarriage: Part Three

I was 15 weeks and one day pregnant when I thought my water broke.

I knew something was wrong immediately. Fluid was rushing down my legs. I was hysterical, but the more I cried, the more fluid I felt, so I forced myself to stop crying, sure that if I didn’t move–if I barely breathed–that would give the babies a better chance of making it.

I laid on the floor waiting for the EMTs as my coworkers stood around me and tried to help. I had to give my miscarriage and medical history in front of my entire department, a new department I had joined about four months prior. Someone called my husband and my mom. I was barely coherent enough to tell my mom I wanted her to drive down immediately.

We were losing the babies. I still remember the doctor telling me I was being admitted “to observe the miscarriage.” They were going to do some testing, but I should prepare myself that the babies would probably not make it, given the volume of blood and fluid I had lost. It was just too early and at their gestational age, there was no chance that they would be viable.

I was admitted to the labor and delivery floor–an event that is usually greeted with joy. A sonogram was dutifully ordered, and to everyone’s surprise, the babies appeared to be fine. There was still enough fluid around them and their hearts were beating strong.

Nurses woke me throughout the night to check if my body had begun the miscarriage. I continued to bleed and lose fluid, but no cramping. Another sonogram was ordered first thing in the morning and the babies were still fine.

It was a miracle. It was early enough in the pregnancy that there really wasn’t any medical intervention they could do to help me keep the babies, so the doctors sent me home with a laundry list of signs and symptoms of miscarriage to watch for. I was to contact them immediately–I would have to be in the hospital if I miscarried because I was so far along and it was twins.

We were told, “At this point, the only thing you can do is pray.”

At that time, they determined I had a large subchorionic hemorrhage and one of the placentas was partially torn. I was put on strict bed rest and told that we would revisit that once I stopped bleeding.

That was the beginning of 141 days of bed rest. My girls were fighters. They held on through more hemorrhaging, a placenta previa, gestational diabetes, preterm labor, and preeclampsia. My body struggled daily to maintain the pregnancy and eventually my liver stopped working properly.

My husband took over all of the day-to-day tasks, cooking, cleaning, shopping, and yardwork in addition to working full time and preparing the nursery for our girls. He brought me freshly cooked dinners and spent the evenings with me anxiously awaiting the results of the daily blood draws. They would determine if my liver was still functioning properly.

It’s funny–during this time my only worry was the babies. Even as the doctors poured over the results of my daily blood draws and scratched their heads that I could appear to be as healthy as I was when my liver function was in the the tank, I only worried about my girls being able to stay in me long enough to be healthy.

Tim, on the other hand, prayed that he would not be asked if he wanted the doctors to save me or save the babies. Every doctor I saw (I believe it was 12 doctors in total) told me the goal would be to get to me 32 weeks.

My girls and I defied every expectation and held on until 35 weeks.

They were both born healthy. They are the miscarriage that wasn’t. And I’m so thankful for them each and every day.

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On Miscarriage – Part Two.

No two miscarriages are alike. Some happen at four weeks, some at 20. Sometimes you bleed every day, and sometimes you don’t know anything is wrong until the doctor tells you.

No matter how far along you are, it hurts. It’s not just losing a baby, it’s losing a chance to have that baby and all of the hopes and dreams you hugged close to yourself. You may go on to have another child, but it’s a different child. A miscarriage is a loss.

It may surprise you, but people often say, “Oh, you weren’t that far along,” to people who have an early miscarriage, instead of “I’m sorry for your loss.”

Having a miscarriage changes you on a very fundamental level. You no longer have the same optimism and elation if and when you do get pregnant again.

The joy at finding out I was pregnant for the second time was unbelievable. We had tried for another year and eventually sought medical help. And then we went through another year of pills, potions, shots and more. It was as if someone had handed me the greatest gift in the world when the doctor confirmed I was pregnant.

But my joy was tinged with a shadow of fear. It’s one thing to know that 25% of pregnancies end in miscarriage–it’s another to have it happen to you.

We had our first ultrasound and found out it was not one baby, but TWO! I had morning sickness and pregnancy rage (it’s real, just google it and then avoid any pregnant woman with it). This pregnancy was so different from our first. We had another ultrasound and everything looked fine.

And then one day, it suddenly wasn’t.

I can’t remember what drove me to call the doctor–something was just off–and they told me to come in. They weren’t worried, we weren’t worried. Tim had gone to work that day.

But I knew as soon as they began the ultrasound. There was no flutter where there should have been two. The tech quietly left to get the doctor, and the doctor looked, too.

Hearing her say it out loud was the worst. And not only do they break the news, they have to give you your options. You see, since it was twins and I was far enough along, I would have to go to the hospital and have a D & C. It was recommended that we not let it happen naturally, because at this point it might not be safe.

That D & C was one of the worst experiences of my life. To give you a perspective, I’m going to share a list I posted on Facebook shortly after the miscarriage. We had told friends and family about this pregnancy, so I was more open about the loss. This post is from when the miscarriage was still raw and fresh:

Ten things I hope you never have to hear firsthand:

10. “threatened abortion/miscarriage”

9. “It was God’s plan.”

8. “fetal death”

7. “If you just stopped trying and/or stressing it would happen.”

6. “recurrent miscarriage”

5. “What was your estimated due date/date of last miscarriage?”

4. “We’ll send the products of life out for testing.”

3. (at check-in to lose babies): “Your total for the procedure today is $1,832.14. Please have the courtesy of paying before you leave.

2. “Monozygotic twins have a higher rate of birth defects. This really isn’t a surprise.”

1. “Both of the babies’ hearts have stopped beating.”

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On Miscarriage – Part One.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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