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.

2 Comments »

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!

 

Leave a comment »

Questions

There are two questions I’ve been asked recently that threw me for a loop.  The first, had me actually doubling over in a fit of laughter, as I attempted to answer.

“You do know what causes that don’t you?”

This question accompanied a gesture toward my three very rambunctious children.  I was tempted to show the scars on my arms from the numerous shots and bloodwork that accompanied each attempt to have a child.  This scar tissue presents a problem in accessing my veins these days.

There are also the scars that don’t show.  The losses, the cumulative effect of three pregnancies in three years.  The fear of being able to carry to term, the worry that our adoption would fall through.  The sadness over not having a “normal” pregnancy. Grief at not having a “normal” birth experience.

I was tempted to show my latest budget as we continue to pay the bills that brought us these three wonders.  My retirement is decimated, we refinanced the car.

Instead, I doubled over in laughter, shook my head and said, “You have no idea what causes this.”  The gentleman looked at my strangely and walked off.

These days, I don’t have the time or energy to educate on infertility, which I would have done in the past.  My life is too blissfully full. I just love that you can’t tell when you look at our family all that came before. We look fertile. We look blissfully normal.

Which leads me to the other question.

Is he yours?

So far, I’ve only been asked this once and I thought I was prepared for when the day would come.  Because we fundraised for our adoption, pretty much everyone we interact with knows our son is adopted.  I don’t mention it to strangers, because it doesn’t matter. He is my son, and saying adopted son feels like a qualifier.  It will be part of his story and he will have his own thoughts on the matter as he grows, but I will not introduce him as adopted.

I have, through the course of work, met a couple people who mentioned they had adopted and then I’ll share, but it’s personal and it’s at my discretion.

My son doesn’t look like me.  I have blue eyes, the palest skin you’ll ever see, and surprisingly, still have some hair.  It’s blondish-brown. He has a warm, olive complexion, and the cutest brown curly hair you’ve ever seen with dancing brown eyes.

I’m sure this is what spurred the question.  But there are so many better ways to ask.  “How old is your son?” (and then let me correct).”What’s your son’s name?” Assume he is and let me say otherwise.

There is a final question, I get these days as it’s becoming more apparent that I am sick. “How do you do it all?” There is no magic to it.  I just take it one day at a time.

Leave a comment »

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.

Leave a comment »

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.

 

 

 

Leave a comment »