Cancer Ever After

Musings on Infertility, Adoption, Parenthood and Cancer

Good News Day

It’s funny, I’ve been going along, focusing on life in chunks.  If I can make it to bedtime.  If I can be there for the kids in the morning.  If I can make it through this conference call without puking (there was a very unfortunate instance while I was on the phone with the entire executive committee).

For me, cancer has tightened my lens.  On rough days, I focus on the next hour, something small and manageable.  On good days, I plan to take the kids to the park or to see the animals, but don’t think of anything outside of managing the next three hours.

I don’t make any plans for two weeks out, I just don’t know what life will be like then. So why is the funny?  My lens suddenly shifted when it was time for my PET scan.  It’s pretty standard for ABVD Chemo to do a PET scan after 4 treatments (2 rounds) to see how you are responding. Honestly, until it was time for my PET scan, I hadn’t even worried about how I was responding, my focus was simply on taking life on day at a time and making it to the next treatment.

As soon as they mentioned the PET scan, anxiety and worry came in.  And then they dropped the ball that I would have to wait a week for results.  Every minute felt like a day. It was hard to sleep, I was so anxious to know the results.

While, I don’t write about it all the time, I’ve poured over medical studies and know the odds.  80% of people of my stage come back with a negative PET scan at this point, 20% don’t, and 2.5% show little to no response and are considered refractory, which is very difficult to treat. If you are in the 20%, your rate of recurrence of Hodgkin’s is significantly higher. I wanted desperately to be in that 80%.

I’m willing to do whatever it takes to beat this, but I’m also ready to be done.  I’m tired of being a crappy mother who is sitting on the stairs instead of pushing her kids in the swing. I’m tired of making them cry when they see me puke, or seeing their faces drop when mommy is too tired to do something. I want to go back to being able to remember things and feeling like I really contribute something to my company and my job.

Everyone has been so wonderful and we have so much help, but I miss being me.  I want to go on a date night with my husband. I want to be able to stay up late enough to watch a TV show after the kids go to bed. I want to take my kids berry picking, to the Zoo, out for breakfast.

I want normal.

PET SCAN CAME BACK NEGATIVE

I still have to finish four more chemo treatments (2 cycles) and radiation, but I’m a little more hopeful that normal is out there.

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You might be undergoing chemo if. . .

Chemo is boring. I was expecting more. More drama, more symptoms during it, for the people getting treatment besides me to look sicker.  Just more. I’ve officially had five Chemo’s now and, well, Chemo day is a bit of a snoozefest.

It’s the days after that bring the not-so-fun.  Here is my fun list of ways to tell if you are undergoing Chemo (as if the five hours hooked to an IV getting tons of poison injected into your body wasn’t telling enough).  What fun things would you add to the list?

You might be undergoing chemo if….

  1. You redefine biker chic with your stylish chemo beanie.
  2. Four-letter words are no longer the dirty ones. Three-letter ones like ANC, WBC, RBC, MCV, and MCH are.
  3. Eighteen hours a day is your optimal amount of sleep. And you can fall asleep standing up, in the shower and at the dinner table (mid-sentence into a pile of spaghetti).
  4. You’re pretty sure you know what swallowing a taser feels like. (But you are way too smart to actually DO this to compare mouth sores to swallowing a taser.)
  5. Orange juice and green olives is your favorite food combination – because the crazy appetite from steroids combined with the weird taste issues from chemo make for very interesting bedfellows. Trust me, you will regret consuming this combo EVERY time.
  6. You entertain fantasies of sawing your legs off from the hip down, just to see if it’s less painful that way.
  7. You sleep with post-its on your face, your mirror and your fridge, because you ask the same question three times in ten minutes and still forget the answer. Chemo brain is REAL. And the reason I keep consuming OJ and green olives is that I forget how the gross the combo is every time.
  8. You have sub-classified the types of vomiting, because one word just doesn’t give you the layer of nuance you need to describe how your day went. And you TALK about vomit and poo. Because body fluids are a big part of your life, and sharing your day is an important way of connecting with others, right?
  9. Attempting a BM feels like a feat of bravery worthy of a Congressional Medal of Honor.
  10. You take a picture of your poo when you finally manage to go, because dammit, it’s worth celebrating!

 

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It Was the Best of Times. It Was the Worst of Times

From everything I’ve read and from talking to other Cancer patients, the second round of chemo is typically worse.  For some of the meds, it’s more of a cumulative effect and you might not feel them until the second round.

Because of this, my mom had offered to take the kids after my second treatment.   With Tim having bronchitis and me having chemo, we both thought this was for the best, but DAMN it was hard.

Turns out, Chemo #2 was both better and worse.  They adjusted my anti-naseau meds, so that part was a lot better.  But we still had my lovely constipation issues which have more of a cumulative effect.

See that lovely pregnant-looking belly? No I’m not pregnant, that’s what the side-effectsof chemo can make your belly look like.  It’s as uncomfortable as it looks.

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So while, I was glad the the med changes helped with how I felt overall after chemo, I must say, some problems were rather, well,  large.

It was hard without the kiddos.  I didn’t realize how much they distract me from how I feel and how I manage to force myself to do more when they are around. And my mom had them for a week, which feels like forever when you are throwing a pity party of one.

While I missed them greatly, I had a really happy/sad moment when we tried to FaceTime them.  The girls were having so much fun, they couldn’t be bothered to talk to us, and Baby H started crying when he saw our faces.  Needless to say, it was a very long week because we didn’t try that again.  I had to resort to picture updates.

Cancer is teaching me a lot about letting go and letting others do things for me.  Prior to this, we’ve spent very few evenings or nights away from the kids.  We both work and it feels like we already get so little time with them. But we are a man down in our house and we need the break.  This is stressful for us in a thousand little ways, and I just get so tired.

I can only  play “Let’s put mommy to bed” as a game with the kids so many times. They want to run and play.  Even Baby H is walking now, they are constantly on the move, and when I’m tired I have trouble keeping up.  It’s not fair to choose only sedentary activities.

So despite wanting to spend all of my time with them, I have to let go, at least a little.  This helps me make my time with them the very best time.  I can be rested so that we can do fun stuff together. And that’s what counts.

 

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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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