Cancer Ever After

Musings on Infertility, Adoption, Parenthood and Cancer

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.

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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.

 

 

 

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Embrace The Suck

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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It’s Go Time – Treatment #1

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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Port That You Say?

In the cancer world, to port or not to port is the question. Prior to my diagnosis, I didn’t even realize this was a question. Don’t get me wrong; I knew what a port was, I just assumed it was standard. In fact, during my not-so-short hospital stay for my pregnancy, I begged for a port so that I could forgo my twice daily blood draws.

Ports aren’t universally recommended, depending on the type of cancer and your length of treatment. I’m swimming in a cancer world now. My boss and one of my coworkers at my very small company both also have cancer. For my boss, his cancer is more advanced and the treatment options are limited, so they wanted to hold off on the port as long as they could due to the possible increased risk of infection. For my coworker, it was assumed she’d get a port because the drugs are that hard on the veins and her treatment course was very long.

Me, I live in that gray window. The drugs are harsh, but my treatment is considered pretty short by chemo standards. It was up to me.

Sign me up!

My oncologist barely had the chance to utter the question before I said, “Port, please!” I’ve been there, done that when it comes to blood draws. I’ve had daily, I’ve had gallons taken at once (okay, 19 vials), I’ve had bad sticks where they blew through three veins before they found a good one. IVs are difficult on me because I have small veins. One of my juiciest veins is on a nerve, and I’ve gritted my teeth and accepted the pain every other day for five weeks as they stabbed at it to keep my babies in me longer. Having a port would make this unnecessary.

This was the extent of my conversation about getting a port.

Big Mistake

My port surgery came and went without a hitch. It wasn’t until after the procedure that a key little nugget of information came to light. I couldn’t lift any of the kids, because I wasn’t supposed to lift over ten pounds. WHAT??????? We had no help arranged. I’d considered this a minor procedure, and given the number of procedures and surgeries I’ve had over the last five years, it didn’t even register that there would be any issues other than normal recovery afterwards.

A port doesn’t exactly work like that. I don’t fully understand why, but when they put the port in your chest and then loop it into a vein, it makes your body go haywire. It was excruciating if I accidentally lifted my arms to about chest level. I couldn’t have lifted ten pounds if I wanted to. My arms ached randomly (and still do sometimes).

They sent me home with orders to take Tylenol if I felt bad. I went home and ran for my stash of pain pills from my last surgery. They became my lifeline for the next few days. Luckily, my in-laws rallied and helped with the kids.

Later, I learned that my experience was one of the BEST for port placement. My coworker said hers was more painful than a mastectomy and ached for weeks. Most said the excruciating pain lasted a week or two. Why did none of the doctors mention this? Once again, I realized it’s up to me to ask the questions.

Technically, I wasn’t supposed to lift the kids for ten days. Big surprise–I lasted three. Who are they kidding? I actually think this helped me. The movement made my aches go away. I also slept in a bra because I found this helped to minimize the pain at night.

I need to remember what helped the most during infertility: it’s up to me to ask the questions and up to me to advocate for myself and my family.

 

 

 

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