Cancer Ever After

Musings on Infertility, Adoption, Parenthood and Cancer

Can’t Be Sick All The Time

 

At times, it’s overwhelming to have three toddlers and cancer, but on other days it’s so damn wonderfully distracting.  My kids have very little clue what is going on with mama, and just want to play, and laugh and love.  Oh, and go to the park.  Every. Damn. Day.

Luckily, the weather is beginning to cooperate, and my energy levels are holding.

When I was diagnosed and scheduled treatments, there were a couple of events, I wanted to make sure I could do- major life events that I didn’t want cancer to take away from. A big one was Baby H’s birthday.  Birthdays are a big deal in my family.  With five kids, it was the ONE day, that was just for you.  It was my chance to be special.  I want my kids to have that too.

We went all out for the twins’ first and second birthday and Baby H deserved no less- I didn’t want cancer to take that.  But at the same time, I needed to be pragmatic.  There are limitations to my energy and time. My #1 must have, was me being able to make the cupcakes for his birthday. It’s something I love and something I can make just for him.

The problem was, when I originally scheduled chemo I was planning his party for the 26th, and that turns out to be Easter weekend, which meant the kids would miss out on Easter egg hunting- all of the kids, my nieces and nephews.  That’s just not right.  So we had to move the party – to the day after my newly revised chemo session.  And day 2 is a rough one.

My limitations were thrown in my face.  Chemo is what it is. I get tired. I get sick. I get through it, but not always well.  I didn’t want that to detract from Baby H’s big party.

My family knew how important it was to me (let’s face it- a first birthday is really more for the parents), and my sisters and mom all traveled down early to set-up and help me stage  an Old McDonald’s birthday party to die for.  I’ll be honest, it was better than anything I could have pulled together if I wasn’t sick.  It took many hands and ideas to make it special.

The most important thing, was the incredible turnout. 11 nieces and nephews, friends’ children.  The kids all had fun.

Baby H was held and loved and celebrated.  The twins loved the party and want to do it over and over again. After they go to the park, of course.

And for a short time, I forgot that I was sick.

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Embrace The Suck

Apparently a very rough twin pregnancy is a great warm-up for chemotherapy. At this point, I’m hard-pressed to say which is worse.  They are both things I hope you never experience.  That being said, there were times over the last four days, when I was glad to be able to say, “It’s bad, but I’ve had worse.”

At the same time, it’s sad that my pregnancy was as bad as chemotherapy.  Telling my doctor that, pretty much shocked the hell out of him.  There are so many ways that they are the same: constant nausea, random vomiting, tired as hell and falling asleep at the drop of a hat.

And then there are the little ways that it is different. There are no chubby babies at the end of this road.  But I will get more time with my babies, so there is that. The big differences are:

1.) The TASTE– Imagine a dead raccoon is rotting in your mouth.  No matter how much you brush your teeth or swirl with mouthwash, it’s carcass continues to decompose.  This is my new normal.  I was warned about the taste, but I’m not great with bad-tasting medicine, let alone this taste.  This adds to my constant nausea and makes it hard for me to drink enough liquid, which is a big deal.

2.) Weird electric currency– So far, I think I’m among the few to complain of this one.  I think it’s a side effect from the “V” drug.  My jaw keeps locking up and it feels like someone is jabbing my jawbone with a cattle prod.  It makes it hard to open my mouth or chew because it can be excruciating. Luckily, this one is fading, so maybe it will only last a few days after each treatment.

3.) Mouth sores– I don’t have actual mouth sores (not yet anyway), but the drugs make your mouth really sore even if there aren’t sores.  Does that strike you as odd? It’s a little like the sensation described above, but more of a mild shock feeling on your tongue or sides of your mouth.

4.) The fog– It’s hard to describe the fuzzy brain that I got.  The best way I can describe it, is that my “Give a damn” is broken.  I’m fuzzy, slow thinking, I swear my IQ has dropped 30 points and nothing matters that much to me.  Outside of my family, not much can move me to do, well, anything.

I’ve begun to see why people lose weigh on chemo.  Eating is a chore and all of these symptoms make food and drink the enemy. The good news is that there are only three major side effects outside of what I’ve dealt with before.  I also suspect that I’ve begun to see the pattern that treatments will follow: Day 1 – feel okay. Day 2- feel bad, Day 3- feel like hell, Day 4- start feeling better.

At least I hope it follows this pattern.  We outsourced the kiddos for Day 3, Saturday, and it ended up being the best thing we could do.  It really scares the kids when I puke and I have to smile and tell them mommy is okay.  I’m not sure I could have pulled that one off on Saturday.

Luckily I was better by the time they came home, and we managed bet time and snuggles.

Baby snuggles cure everything.  

My family is going to be what allows me to get through this.  I need those moments of joy to puncture the fog and distract me from wallowing in my misery.

 

 

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The Fight of My Life

The battle lay before me, and I tried to steel myself.  Tim and I looked at each other and reached out to hold hands.  You could visibility see ourselves gird our loins.  It’s a battle we fight nightly these days.

It didn’t use to be this way.  Before.

Bedtime.

Before the twins turned two, bedtime was a bit of peace after a hard day at work.  It was something we looked forward to.  Bedtime meant singing and cuddles and then my girls crawling obediently into bed, while I went and rocked the baby to sleep.

These days, bedtime has turned into a war of wills. If we don’t time it perfectly, there is a battle over getting dressed, getting hair brushed, brushing teeth, taking a bath, not taking a bath, reading another story, rocking, not rocking, mommy singing, mommy not singing.  Anything is game depending on the moods of my little dainty dictators.

Last night was a doozy.  I misjudged the level of exhaustion in my children (Baby H was simply not tired, H and P1 were ridiculously overtired.) This simple misjudgment turned the three minutes of getting jammies on into a 30 minute battle of wills with tears, hairpulling and over-the-top wails.

For ease, one of us usually takes Baby H while the other does bedtime with the twins. Normally this isn’t an issue.  However, our twins have taken it into their heads to pick which parent is theirs.  I’m P1’s, Daddy is H’s.  On a rough night like last night, there are meltdowns if each kid doesn’t have “their” parent rocking them for bedtime.  Queue meltdown.

Bedtime was 60 excruciating minutes of tough love, comforting, rocking and trying to get a very untired baby to sleep.  We both were completely wiped by 9:00 p.m.  How that hell are we going to manage this if I’m sick?

These days happen.Bbedtime is sometimes a breeze, and some days it’s the seventh level of hell.  That’s life with a toddler. Their moods change faster than the wind.  This is my worry and my fear.  Normally, I reach deep and try to maintain calm in the midst of all of this chaos.  I’m not sure I can do this if I’m nauseous, exhausted (more so than the norm), or in pain.

Time will tell.

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“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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Saying it makes it real

 

Even though at this point we’ve had numerous tests and the C word has become a routine part of our vocabulary, it doesn’t feel real. I don’t feel sick.  Shouldn’t you feel horribly ill if you have something as serious as cancer?

In an attempt to make it more real, we’ve been breaking the news to friends.  I’ve been doing this almost obsessively, as if by saying it out loud, it will make the news sink in.

It hasn’t.

I’m not completely without symptoms, but they are symptoms that have been going on for so long, I don’t even think of them as symptoms.  I am itchy.  You may have just started scratching yourself, but not the occassional itchy.  Since about a month after Baby H was born, I’ve been scratching myself bloody in my sleep  and if I’m not careful in my waking hours too.

Neck. To. Toes. Itchy.

I have scars on my arms and legs from scratching myself.  I’ve visited three dermatologists, followed up with my rheumatologist, and visiting my GP hoping for an answer or a solution to this.

I also have a rash, but this is not new for me.  I’ve had rashes over large parts of my body for the better part of six years, it’s considered a symptom of my autoimmune issues that contributed to my infertility.  I just ignore it. . . well. . . unless it itches.

The other symptoms I have are items I simply explained away.  I bone deep tired. All the time.

I also have three kids under three who between them, wake up 3-4 times a night causing me to play my own version of nighttime wack-a-mole, as I run from room to room, patting their butts and comforting them back to sleep. I thought this one was self-explained.

I go to bed at 9 and wake up at 5 after sleeping in fits and starts.  Sometimes, on a good night, I get a long stretch of sleep and I realize that I wake up covered in sweat.   I just assumed I was getting hot.  Why would I assume these are night sweats and a serious symptom?

I feel good. They put me on iron to correct severe anemia caused by the cancer, so some days I feel better than I have in almost a year!

So I say the word out loud.  I tell friends, I tell family.  Hell I tell the lady sitting next to me at the lung clinic.  Perhaps, if I say it enough, the truth, the reality, of my diagnosis will sink in.

I have cancer.

 

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