Cancer Ever After

Musings on Infertility, Adoption, Cancer and Widowhood.

May 6

Unfair

by nhenderleiter

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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Mar 22

Can’t Be Sick All The Time

by nhenderleiter

 

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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Mar 21

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

by nhenderleiter

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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Mar 10

Nectar of the Gods

by nhenderleiter

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.

 

mcd

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Mar 8

Embrace The Suck

by nhenderleiter

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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