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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Will They or Won’t They- Treatment #2?

It’s been a whirlwind- all those many, many bottles of pills did not turn my bowels into an obedient child as promised. This is a problem. Wednesday rolled around and my every other day calls, turned into daily updates.

Operation bowel watch- it’s real.

And somehow in the middle of this, we had a gross miscommunication.  I was told my chemo treatments would be on Thursday, but my “sheet” had my appointment for Wednesday. I missed the change.  So as Wednesday rolled around, imagine my surprise that I am calling my onc for my daily update as they are calling me to find out where I was.

Given operation bowel watch- was a watch, not a status update, the determination was made to cancel my chemo for the week. This came as a huge surprise, I didn’t imagine a treatment would be canceled this soon, and due to constipation.

I called the nurse, and clarified under what conditions they would be willing to go ahead with a treatment. It was pretty simple, my bowels had to cooperate.  They finally cooperated at the 11th hour and I called the nurse bright and early Thursday morning to beg to have chemo this week. Can you believe I was begging to have Chemo?

They couldn’t do Thursday (as we had originally discussed but they could do Friday).

Chemo #2 was a go!

 

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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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Nectar of the Gods

So far, the worst part of treatment has been managing the side effects from the medicines. At this point, I think you could say my side effects have side effects. One of my biggest challenges is getting enough liquid in.

I have a complicated medical history and getting enough liquid in was an issue prior to treatment for a variety of reasons. With chemo, this has gone from a small problem of “I can barely get enough liquid in,” to a crisis of epic proportions.

Two of the possible complications from the medicine are constipation and diarrhea. Maintaining a healthy amount of liquids is paramount to maintaining a balance between these.

I guess you could say my inability to drink anything has led me to the bowels of despair.

What? Not funny? Trust me, if you were my bowels over the past week you’d be howling with laughter over this. I just spent $50 on a variety of medicines my doctor thinks will turn my bowels into an obedient child, and am now on “bowel watch.” That’s right, folks, my BMs are so important that I get to check in every other day until we find the magical mixture to balance the pendulum.

Thank you, chemo, I didn’t already talk about shit enough in my life.

Oh, wait? Was it just this morning that two little girls shouted “Poopie butt–hee, hee, hee” across the table at each other? I guess I do talk about poop plenty already. Since I’m already obsessed with the daily BMs of three people, why not add a fourth to the mix? At least I’m not in diapers.

Back to liquid. Water tastes disgusting. I can’t drink anything carbonated. Flavored waters have always grossed me out. Gatorade–depends on the day. Ice-cold seems to help. Don’t ask me why, but cold seems to mask the flavor.

And now I’ve found it: the nectar of the gods. McDonald’s iced tea. Just enough flavor to mask the dead raccoons/metallic blech in my mouth, and not enough flavor to cause my nausea to turn into a full-body rejection.

If you need to find me during the next four months, I’ll be in line–at McDonald’s.

 

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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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