Cancer Ever After

Musings on Infertility, Adoption, Cancer and Widowhood.

May 13

Good News Day

by nhenderleiter

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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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 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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Mar 2

It’s Go Time – Treatment #1

by nhenderleiter

Life is fully of wonderfully ironic parallels. When we were going through the adoption, it really struck me as symbolic that we had exactly five months from the date we were offered Baby H until his due date.   I spent exactly five months on bed rest, continually laying on my left side to bring my baby girls into this world.

I guess you can say that I know better than most that five months can feel like forever . And now, I have another five month trial ahead of me.

First, is my chemo.  I will be receiving the “Gold standard” for intermediate stage Hodgkin’s Lymphoma. ABVD.  (A: doxorubicin (Adriamycin®),B: Bleomycin (Blenoxane®), V: Vinblastine (Velban®),D: Dacarbazine (DTIC-Dome®). Each of these drugs will be given one after the other via an IV into my port.  The treatment can last anywhere from 2-6 hours depending on your doctors, dosage and I would guess what your body can tolerate.

I have fourth months of this treatment.  Technically, the doctor is prescribing 4 cycles, which are two doses given 14 days apart. So I will have chemo eight times. 

Side effects I have to look forward to are:

  • Heartburn or acid reflux.
  • A temporary decrease in blood cell counts. White blood cells are the cells most affected during ABVD treatment, which increase my risk of infection.
  • Mouth sores.
  • Flu-like Symptoms such as  headache, fever, chills, sinus congestion, and muscle pain.
  • Nerve Irritation- Vinblastine may cause numbness or tingling in the hands and feet.
  • Nausea and vomiting
  • Constipation
  • Hair loss
  • Heart damage (though not usually at the dose given for Hodgkin’s)
  • Lung Damage
  • Premature menopause
  • Changes in Peripheral Blood Flow (Raynaud’s Syndrome) – Which they are already worried about with my autoimmune marker’s, so this probably makes me more likely to develop this one.

Ooh, ooh, where do I sign up? This sounds like fun!

Nonetheless, every other week on Thursdays, I will hang out as poison drips in my veins to kill this cancer inside of me. The big surprise was the difference in what the doctor proposed in our initial visit versus during his regroup.  Since my kids are so young, he spoke of me getting “white blood cell booster shots” in between treatments when we met with him initially as a low WBC is very common with this type of chemo.

During our regroup, we were surprised to find out that he read all of the current research and research shows that the booster shots interact badly with the “B” drug, and increase the risk of lung damage, which is permanent.  Current recommendations are to avoid the booster shots entirely during treatment and basically let my WBC bottom out. If I get an infection they will then treat the infection.  The other big change between “typical” protocols and mine is that they will try to avoid delaying treatment.  This treatment is most effective if given on time and delaying may necessitate additional cycles.

Following chemo, I will have 3-4 weeks of radiation –  five months total.

Five months of treatment to let me live longer.  It doesn’t sound bad when you say it that way.

Radiation has it’s own challenges. Since the tumors are in the lymph nodes and mine is primarily in the chest, they have to radiate near some very important organs. The biggest challenge is that the tumor basically wraps around my heart and there is a risk of damaging my heart.  The hope is that the tumor will shrink enough from chemotherapy and they can radiate carefully to minimize/prevent damage to my heart. If they forgo radiation, since my tumor is so large, there is a good chance the cancer would come back.  It also increases my risk of a secondary cancer and/or heart failure.

Surgery cannot be used to remove these tumors given where they are located, and even after chemo and radiation I will have little “lumps” that remain inside me for the rest of my life.

The entire treatment plan is a delicate game of weighing risks and benefits. The doctors have to make judgement calls on what gives me the best chance of survival now and also minimizes possible issues longterm.  They don’t want to save me from cancer just to die from a complication a few weeks or years later.

Honestly, in the cancer world, my treatment is short, and it’s a luxury that they even have to worry so much about long-term complications because the long-term survival rate is so high. And those are risks that I will take.  Dead is dead and unfortunately very permanent.

If I don’t have treatment there is one ending to this journey, and that would be a pretty short trip.  By following my doctors plan,  I’ll happily move into the unknown of potential future complications.

 

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Feb 29

The Fight of My Life

by nhenderleiter

The battle lay before me, and I tried to steel myself.  Tim and I looked at each other and reached out to hold hands.  You could visibility see ourselves gird our loins.  It’s a battle we fight nightly these days.

It didn’t use to be this way.  Before.

Bedtime.

Before the twins turned two, bedtime was a bit of peace after a hard day at work.  It was something we looked forward to.  Bedtime meant singing and cuddles and then my girls crawling obediently into bed, while I went and rocked the baby to sleep.

These days, bedtime has turned into a war of wills. If we don’t time it perfectly, there is a battle over getting dressed, getting hair brushed, brushing teeth, taking a bath, not taking a bath, reading another story, rocking, not rocking, mommy singing, mommy not singing.  Anything is game depending on the moods of my little dainty dictators.

Last night was a doozy.  I misjudged the level of exhaustion in my children (Baby H was simply not tired, H and P1 were ridiculously overtired.) This simple misjudgment turned the three minutes of getting jammies on into a 30 minute battle of wills with tears, hairpulling and over-the-top wails.

For ease, one of us usually takes Baby H while the other does bedtime with the twins. Normally this isn’t an issue.  However, our twins have taken it into their heads to pick which parent is theirs.  I’m P1’s, Daddy is H’s.  On a rough night like last night, there are meltdowns if each kid doesn’t have “their” parent rocking them for bedtime.  Queue meltdown.

Bedtime was 60 excruciating minutes of tough love, comforting, rocking and trying to get a very untired baby to sleep.  We both were completely wiped by 9:00 p.m.  How that hell are we going to manage this if I’m sick?

These days happen.Bbedtime is sometimes a breeze, and some days it’s the seventh level of hell.  That’s life with a toddler. Their moods change faster than the wind.  This is my worry and my fear.  Normally, I reach deep and try to maintain calm in the midst of all of this chaos.  I’m not sure I can do this if I’m nauseous, exhausted (more so than the norm), or in pain.

Time will tell.

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