Cancer Ever After

Musings on Infertility, Adoption, Parenthood and Cancer

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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10 Things That Don’t Suck About Cancer

10.) It’s an excuse to get a motorcycle! A motorcycle would go great with my new scars and tattoos, right?

9.) No more shaving! Let’s be real, ladies, we all know we stop shaving in the winter, but now I won’t have to shave in the summer.

8.) I get to try out a Brazilian–without the embarrassment of someone actually giving me the Brazilian. Who really wants someone waxing there?

7.) I may actually get to read a book. Granted, it will be with chemo dripping into me, but I can’t remember the last time I just sat down to read a book. I love to read.

6.) I don’t have to cook. My sister organized a “food chain” and I think it will take a U-Haul to bring down all of the food she solicited from friends and neighbors from my hometown.

5.) People will no longer give me shit for wanting to take a nap. I can play the cancer card. That’s right, cancer = my right to take a nap. Every. Damn. Day.

4.) I’ll get to see my family more. My extended family, that is. My mom and sisters are going to travel down regularly as I go through treatments. My children love all the family that has been coming to visit.

3.) No more itchies!!! I’ve been crazy itchy from the neck down for nine months. I wake up scratching myself bloody. They tell me this should go away.

2.) Cancer is cheaper than adoption. I actually repeat this one quite often (for example, every time I open my mail). My estimates put it at about 1/5 the cost of adoption, provided I can keep working and minimize any time on disability. The plus side is, even if I have to stop working, cancer is covered under short-term disability and leave, unlike my adoption leave time, which was unpaid. I’m pretty sure it will end up being significantly cheaper.

1.) I’ll finally meet my Weight Watchers goal weight. I mean, let’s get real. Cancer is probably the only way to hit THAT unrealistic number.

As an added bonus for my husband, he gets to be married to a blonde, a brunette, and a redhead at the same time. Behold, the power of wigs!

Who am I kidding? I’m pretty sure that just about everything is going to suck about having cancer. And that last one? Apparently, not all cancer treatments make you lose weight, and I might actually gain weight on my treatment. I feel like I’m getting ripped off.

Cancer without weight loss?

For a girl who has struggled her entire life with her weight, that’s just rubbing salt in the wound. Thanks, cancer, now fuck off.

 

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The Staging Game

There is this strange time of limbo after you receive the diagnosis of cancer and before you know just how bad it really is- aka your stage. For me, this was an agonizing period full of tests.

First the yes-no-maybe biopsy as I like to call it. If you’re into details it’s a fine-needle aspiration. Basically they numb the hell out of you and then tap on you with something that looks like a pen. Since mine was on my neck, I couldn’t help but think of this scene from Gross Point Blank. GPB Kill

Mine, was a bit less bloody, but you get the idea. The sample is really small with this, so most people get a no or a maybe. Our ENT was very surprised that they were able to get enough of a same to not only to get a “YES!”, but to confirm it was Hodgkin’s Lymphoma.

Apparently because this test gives so many maybes, type from this is not enough for an oncologist to treat based on it.  You also have to know the specific subtype of your cancer.  I also had to have an incisional biopsy where they take a sample to basically DNA test the type of cancer. The ENT had mentioned this on our first visit and explained it as, a biopsy to remove about an inch square so that they can make sure if it’s cancer or not, if it is, we’ll use that to know exactly what kind.”

A lot had changed since that first visit.  We knew it was cancer, but it didn’t occur to me to ask the doctor more questions.  We scheduled the second biopsy and away we went. As you can see, it turned out to be much more than a one inch incision.  The ENT decided to give me a leg up on treatment and removed all of the tumor he could above my collar bone, which turned out to be the diameter of a baseball.

IMG_5861

Much to my surprise, I came home with a drain.  Now imagine for a minute that you are a ten month old baby.  Earrings fascinate you… necklaces are the stuff dreams are made of…

A drain? Mommy is just carrying around a new toy for you. All. The. Time. The struggle began.  I dodged, I weaved, I held Baby H strategically, and still we sruggled.

Trust me, someone pulling on a tube that’s stitched into your body HURTS.  The girls did okay, I was able to explain “Mommy has an owie, and it hurts if you touch her pouch.”. There were a few hiccups with things like bedtime.  Trying to feed Baby H was a bust, my drain was too fascinating for him to even think about sleeping, so I was on twin duty. Rocking two girls with tubes and a pouch full of blood, and I don’t want to know what else is tough, but not undoable.

We muddled through.   Getting the tube out was a major relief though.

And still.  These tests where nowhere near enough to tell me my stage.  That required more blood work and a PET scan.  Compared to the incisional biopsy the PET scan was a breeze.  It was a little surreal.  They inject you with a radioactive sugar so that the cancer can eat the sugar and then the parts of your body that absorb the sugar will glow on the scan.

The nurse came in wearing full protective gear and carrying a little silver chest that he then opened after entering a code, completing a retinal scan and offering up the secret handshake – it seemed like that anyway.  After opening it, he removed a syringe that looked like it belonged in Austin Powers.  It was huge and silver and so over-the-top it couldn’t be what they were actually going to use on me.

PET

Much to my surprise it was. I was injected, then simply waited an hour for my cancer cells to get their feed on.  After an  hour, they completed a quick scan and I was done.

And now we were back to the norm with this process. We waited.

The results from the 2nd biopsy trickled in first- Hodgkin’s Lymphoma Nodular Schlerosis.  All good news.  A very treatable cancer with the most common subtype which keeps it very treatable.

We didn’t get a call on our PET scan, so I decided to phone the nurse and she read me the radiologist notes.  I only really heard one part of it. “Bone activity detected.”

My heart dropped to the floor. All of my online research, only mentioned bone activity with stage IV.  I asked the nurse if she could tell me more, and she basically said, she really didn’t understand the results.  I’d have to wait until I talked to the doctor.

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Canceled

I received an email from the counselor letting me know our birth mother had canceled her next visit with her. And then the counselor will be on vacation. Two weeks with no visits and the adoption is less than two months away. My heart sank and I texted Tim immediately. He quickly called me over his lunch hour so we could discuss it.

This could have been as simple as our birth mom not feeling up to it that day, but as possible parents, we weigh and measure every interaction with our birth mom to see if there is a sign she will change her mind. I promised that Tim and I would start talking about when, not if, we have Baby H home with us. This is harder to do than I thought.

We came into this adoption with scars from our previous losses. In our home, we have a closet that we can’t bear to open because it contains the mementos from our other babies. Babies that we didn’t name because that made the loss even more real. I regret that now. There are certain days that I will be in a funk because the memories just pile on–the dreams of what might have been: our due dates, meeting a child who is the age they would be now, seeing a set of identical toddler twin girls, the anniversaries of our miscarriages.

We both thought that we had healed from our losses, but little events like this bring those losses to the forefront. Should we be worried that she canceled? Have we done something wrong? At the end of the day, we want to make sure that we have done everything we can to reassure her that we want this child more than anything and will love him completely.

I can’t imagine the pressure to choose parents to raise your child. How do you know that you are picking the very best ones? I can’t promise that we will be the very best parents out there. I can only promise that we will try. We will work hard to raise him right. I know that we will love him completely.  We already do and he is not even here.

So I called. I spoke with her. I’m going to drive down after the girls’ bedtime this week so that I can go with her to her next doctor’s appointment. In an ideal world, Tim and I would both be there, but we can’t swing that. She and I are going to go out to lunch together and spend a little time getting to know one another better. We’ll have two visits instead of one this month. She needs to know that she is giving him to parents that will love him. She needs to feel comfortable with us. She deserves to learn more about us and what kind of parents we will be.

Baby H deserves this too. For our open adoption to work, we need to build a relationship that will last through the years. We need to make sure we have a common goal: doing what is right for Baby H. We need to be able to have comfortable and cozy visits throughout the years. We need to expand our hearts and our minds so that we can all become part of one big family for his sake. He deserves this.

For now, we’ll start one step at a time. Tim and I will both visit with her in two weeks to continue to build that bridge. We will take small steps that will help us lay the foundation for the rest of his life. I’m starting two baby books–one for us and one for him. I’m going to put pictures of his birth mom and family in one book for him. As he gets older, we can update and add pictures together throughout the years. I want him to have a place for pictures of us and his sisters, but also pictures of his birth family throughout the years. Hopefully, one baby book will turn into several.

And hopefully, canceled is just that. An inconvenient appointment, not a sign of something more.

 

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Snake Oil Salesman

What do you envision when I say the phrase “snake oil salesman?” Someone seedy? A quack? How about those who actually bought the snake oil or whatever was being sold? Until infertility, I always envisioned those who tried these “miracle” cures as fools. How could they be so naive as to believe that a certain tonic or elixir would fix them or their loved ones? I’ve come to learn that I was looking at this from the wrong perspective.

Two or three years ago, I could easily have been that eager audience member clamoring to buy the magical cure-all elixir. Imagine for a moment that you lived in the days before chemotherapy. In a time where there was no diagnosis or treatment for Crohn’s or Graves’ disease. All you know is that a loved one is wasting away before your eyes, or they are in unbearable pain. If there was even a sliver of a hope that what’s in the bottle could ease their symptoms or make them go away, would you take what that bottle offers? I bet you would.

That’s what infertility is like. What you want the most in the world is just out of your reach. You have no real explanation as to why things aren’t working; you just know they aren’t and you are willing to grasp at any straw. I used to live in online fertility forums. I’ve read stories of women who tried eating pineaple cores for a week or did head stands after sex in the hopes of getting pregnant.

I’ve tried many things myself: acupuncture, supplements, pills, shots, exercising, not exercising, yoga, meditation, eating clean, eating diary-free, and even electro-acupuncture. I was willing to try almost anything to get our miracles. I swear I even read of not one, but two, ladies who drank cow urine. The fertility industry, at times, reminded me of the stories of the snake oil salesman. People know they have a built-in audience that will do anything for the cure. Tim and I spend hundreds of dollars on all sorts of fertility cures in the hopes that it would bring us our dream baby. There’s not much that I wasn’t willing to try. (Although you’ll be proud to know I never did a handstand or drink cow urine.)

As you pursue the dream of family, it’s hard to focus on facts. It’s hard to weigh your options and it’s hard not to be swayed by a sexy speech that promises more. It’s surprisingly hard to trust your doctor.

There is a fine line between advocating for yourself and trusting in your doctor. I don’t believe that you can trust anyone completely with your health or your future because no one has as much at stake as you. You have the strongest motivation. But it is critical that you trust the doctors who you work with and believe in their judgement.

As a patient, I had to advocate for testing. I knew, based on past medical factors, that I had one weird thing in my blood. I didn’t completely know what it meant, but I knew that for some people it could be related to infertility and miscarriage. But it’s rare to be asymptomic with it (outside of miscarriages). My first doctor brushed my questions aside. I didn’t push. After we lost our identical girls, I demanded answers. He had none.

We researched more, and we decided to trek to Colorado to find a specialist who might know more. He immediately asked for more testing. In the end, it was determined it was a factor in the infertility, but not definitively the cause. It was a suspected cause for the miscarriages, and it did change our course of treatment. As we made that journey, I struggled to make sure that our decisions were based on fact, not some pitch. I read medical journal after medical journal to see the research firsthand. After he reviewed how he would treat us, I asked for articles related to the course of treatment. I needed to be sure that we weren’t pinning our hopes on snake oil. I also had to trust in him and his team and know that they had a wealth of experience to give us our chance at take-home babies.

That’s our one and only successful pregnancy.

That’s what brought me to seeking out medical professionals before trying to get pregnant again. Honestly, we received mixed answers. Some of the doctors felt like the risk of repeat complications would be much less with a singleton pregnancy and others felt like it wasn’t worth the risk. All counseled us to weigh another pregnancy very carefully. In my husband’s mind, it was never worth the risk. That’s why this adoption is such a blessing. We don’t have to roll those dice or take that chance. I don’t have to risk not being there for the two miracles that I already have in order to have a chance at having a third.

I’m not sad about missing out on another round of bedrest, or being sick, or being worried each and every day that I will lose another baby. That my body will kill another baby. A constant, overwhelming fear that something could go wrong at any moment is the strongest memory I associate with my pregnancy. The stories of a biohazard team being called in to clean the blood from my office floor and the entire floor being shut down after I hemorrhaged is funny in a not-so-funny way now, but it’s not a path I want to go down again.

And I don’t have to worry about falling for some miracle cure being sold by a snake oil salesman.

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