Cancer Ever After

Musings on Infertility, Adoption, Parenthood and Cancer

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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Don’t worry, it’s the good kind.

Being told this makes my head want to explode. After the radiologist’s verbal throw-up, breaking the C word, we quickly had another visit with the ENT where he also confirmed I had cancer and he went on to explain:

But it’s the good kind- Hodgkin’s Lymphoma. It’s considered curable in almost all cases.

Don’t get me wrong this was a huge relief,  I had already researched the various types of lymphoma and knew this was the best news we could ask for. Having this type of cancer gave me the best chance of getting what I prayed for- a chance to watch my babies grow up.

But somehow being told cancer is “good” when you know that you will have poison injected into your body to kill the cancer, and know that it’s likely you’ll have radiation that will burn your skin and can damage your organs, is incomprehensible. Both treatments may lead to  future cancers or additional long-term complications. If you ask me,  “it’s the good kind” is a load of crap.

This phrase should have been stitched on a pillow over the next week. We broke the news to family and friends and used it shamelessly to reassure them.

At same time, when someone familiar with this type of cancer says it to me, it raises my hackles.  I know my odds of survival are phenomenal, but I feel like this phrase trivializes the fight that is ahead. It’s survivable only because they know exactly what treatment it responds to, you still have to do chemo and radiation. You don’t get to push the easy button.

The survival rate lets me know that my fight should be worth it and I plan on clinging to that in my darkest hours. I appreciate that I know going in my fight will be worth it, and I love having less uncertainty.  But I don’t doubt for a minute that there will be a very real battle with some pretty shitty days.

It may be the good kind, but that doesn’t make it easy. It’s still cancer.

 

 

 

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Please Don’t Think I’m Typical

My one fear with sharing our journey so publicly is that our story will be held up as the gold standard for infertiles. We will become THAT story: “I knew this couple that did IVF and had twins, and then someone just offered them a baby to adopt.”

There is so much more to the story. I started sharing my journey when we already knew we had a happy ending. No matter how this adoption ends, we still have our girls. We are so much luckier than most. A better googler than me could drown you in statistics on how many people simply can’t afford to try any treatments for their infertility. I don’t know how many people there are, but if I told you that’s it’s $300 for a prescription of pills just to try to get pregnant, I bet you would feel that pinch. If you knew that it was usually at least $2,000 per attempt at an IUI (i.e., the turkey baster method), I would guess that you can start to see how daunting it is to try to pursue treatments. And IVF…oh, IVF is between $15,000-$30,000, depending on your course of treatment if you are paying out of pocket.

And the success rate is not what you think. It’s specific to each couples’ issues, but the national average for success for IVF treatment hovers between 30-40%. I’ve had friends that were given less than a 10% chance of success. Not all couples who pursue adoption end up with a baby, either. I have friends with more than one failed adoption under their belt, and another attempt simply isn’t an option.

The reality is, most people simply never make it as far as we have. They are tapped out before they get there. We got lucky because insurance helped cover part of what we’ve gone through. Instead of being tapped out at the IUI phase, we were able to try IVF not once, but twice. And that extra round means that I now get wet sloppy kisses and baby hugs. There are countless other infertiles who still wish for those.

There were also hard conversations between my husband and me, decisions you face as an infertile. Are we willing to sell our home to finance treatments? How about selling a car? Can we work two jobs or three just to have a chance at an IUI or to try to save for adoption? People can and do go bankrupt trying to have or adopt a child. Once again, Tim and I got lucky–this was one area we were never in agreement on. I was willing to sell the house, I was willing to sell the car. No matter what, in my mind, the end of the journey had to involve a child. I do not think that I could have made peace with a childless life. And I have plenty of children in my life, tons of nieces and nephews I adore. I was willing to try almost anything, do anything. Me, who works in the financial industry, who has counseled others on how to make smart financial decisions, was willing to commit financial suicide in order to have a family.

Tim was not willing to go as far. These were the hardest arguments we had in the pursuit of a family. Arguments like this can break the strongest of couples. Once again, we are lucky that it didn’t come to that for us.

I also want to point out that adoptions do not typically fall out of trees or come via random texts. It usually takes a lot of time and patiently waiting to be selected. The agencies that we’ve worked with told me that Tim and I might take a little longer than most if we went through the agency matching process because we already have two children. A lot of the time, families without any children are picked first.

Once again, we got lucky, so incredibly lucky. But this is rare, random and so very wonderful. Do not for a moment think it’s typical. Most adoptions take at least a year, if not two or three, to be finalized. A lot of couples wait close to a year just to be selected by a birth mother.

Instead, as you think of our story, I want you to remember that we worked, we prayed, we sacrificed and most of all, we had help to get where we are. And for every story like ours, there are countless others out there that did not find their happy ending.

I challenge you to make a difference for all those whose stories you haven’t heard–those who have gone to sleep after crying themselves sick yet another night. If you want to make a difference, ask your employer to offer fertility coverage and adoption benefits, even if you don’t need them. Do it because it’s the right thing to do. Consider donating to an organization that helps finance infertility treatment or adoption. Speak up against personhood legislation that would outlaw infertility treatments. Take action to make someone else’s journey just a little easier. Help someone else grow their family. Be mindful in your questions to others.

And please, please, please do not offer our story up as an example. We aren’t typical. We are blessed beyond words to have found our rainbow babies. We can’t wait to add a son to our family. We are a family of four, soon to be five. We are so many things, but typical we are not.

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