Cancer Ever After

Musings on Infertility, Adoption, Parenthood and Cancer

The hardest thing I’ll ever do.

As a child, the hardest thing I ever had to do was:

… get on the school bus with a complete stranger
… speak in public for the first time
… hear the word divorce
… say goodbye to my best friends

As an adult, hardest thing I ever had to do was:

… hear there was no heartbeat
…allow myself to be stuck with needle after needle
…go to the hospital and leave without our baby girls
…bleed for months on end, laying it that bed, praying our babies would make it
…rock two colicky newborns all night long
…walk into that hospital not knowing if I’d leave with a son
…say I had Cancer out loud
…hold out my arm for that first IV.

No.

Now I see those weren’t really that hard at all because you were by my side, doing whatever was needed, being my shoulder to cry on. It turns out the hardest thing I will ever have to do is:

…get out of bed and face the day without you by my side
…walk into the kitchen to cook breakfast, when you should be standing there
…go to bed alone, never again to cuddle up against your side

No.

The hardest thing I’ll ever have to do is:

…to explain to our children why you aren’t here
…to make sense of what you’ve done
…to understand why you didn’t fight to be at our side.

No.

By far, the hardest thing I’ll ever have to do

….is to forgive you.

I love you.

woman in black long sleeved cardigan

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Still Here

I’m not dead.  Just thought I’d throw that out there since it’s been so long since I’ve posted.  I had good intentions when I revived the blog upon receiving my diagnosis.  What I didn’t account for was the level of fatigue and ridiculous amount of energy it takes just to get out of bed, work and take after my kids when my body is at it’s lowest.

To catch you up on my story, I finished chemo after a bit of a scare, I had a sinus infection that went out of control due to my neutropenic (barely any white blood cells to fight infection) state.  I went from not feeling well to barely speaking and burning up with fever within a day and ended up in the hospital for several days. That experience scared me quite a bit, because it was the first time I truly feared for my life since beginning treatment.

Once we got that little scare out of the way, it took me a while to ramp back up and finish my treatment. The final chemos seemed anticlimactic after that.

Then there was a glorious break, a three week break between chemo and radiation when I began to feel human.  I was finally able to take the kids a few places by myself.  My family and in-laws have been taking them to do fun things most weekends for us and daycare handles them during the week for most of the day.

It seemed like everything had taken a turn and I was in the home stretch.  I went for my radiation consult, got fitted for my mask and was scheduled to start treatment.  That’s when the wheels fell off. I received a phone call the day I was to begin radiation treatment- “We need to talk, there are complications with your treatment plan, and you have some choices to make.”

When I called him back, I found out that given the placement of my tumor, he couldn’t proceed with radiation. There wasn’t a way he could configure the treatment that was within acceptable levels of radiation to my heart and lungs. Queue freakout.

 

 

 

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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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Unfair

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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