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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Saying it makes it real

 

Even though at this point we’ve had numerous tests and the C word has become a routine part of our vocabulary, it doesn’t feel real. I don’t feel sick.  Shouldn’t you feel horribly ill if you have something as serious as cancer?

In an attempt to make it more real, we’ve been breaking the news to friends.  I’ve been doing this almost obsessively, as if by saying it out loud, it will make the news sink in.

It hasn’t.

I’m not completely without symptoms, but they are symptoms that have been going on for so long, I don’t even think of them as symptoms.  I am itchy.  You may have just started scratching yourself, but not the occassional itchy.  Since about a month after Baby H was born, I’ve been scratching myself bloody in my sleep  and if I’m not careful in my waking hours too.

Neck. To. Toes. Itchy.

I have scars on my arms and legs from scratching myself.  I’ve visited three dermatologists, followed up with my rheumatologist, and visiting my GP hoping for an answer or a solution to this.

I also have a rash, but this is not new for me.  I’ve had rashes over large parts of my body for the better part of six years, it’s considered a symptom of my autoimmune issues that contributed to my infertility.  I just ignore it. . . well. . . unless it itches.

The other symptoms I have are items I simply explained away.  I bone deep tired. All the time.

I also have three kids under three who between them, wake up 3-4 times a night causing me to play my own version of nighttime wack-a-mole, as I run from room to room, patting their butts and comforting them back to sleep. I thought this one was self-explained.

I go to bed at 9 and wake up at 5 after sleeping in fits and starts.  Sometimes, on a good night, I get a long stretch of sleep and I realize that I wake up covered in sweat.   I just assumed I was getting hot.  Why would I assume these are night sweats and a serious symptom?

I feel good. They put me on iron to correct severe anemia caused by the cancer, so some days I feel better than I have in almost a year!

So I say the word out loud.  I tell friends, I tell family.  Hell I tell the lady sitting next to me at the lung clinic.  Perhaps, if I say it enough, the truth, the reality, of my diagnosis will sink in.

I have cancer.

 

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The end of my world as I know it.

First off, let me start by apologizing. I left this blog so abruptly. I meant to tell more details of the birth of Baby H and neatly end the blog with our happy ending.  Make no mistake, it was a happy ending.  Our court proceedings went well and our adoption was finalized without a hitch.

I just couldn’t bring myself to take  a break from soaking him up to write.  Maternity leave was AMAZING.  Taking care of ONE baby when you AREN’T recovering from childbirth is the stuff dreams are made of.  Baby H was so easy-going, he was a dream to take care of and leave gave me extra days with P1 and H to play and have fun.

At three months, I wanted to write, but life was beautifully, wonderfully hectic with three kids under two.

I thought about it again when Baby H turned six months, but the little stinker was starting to crawl and really giving us a run for our money.  I was just so tired in my down time and I couldn’t find the time to put the words down that I kept writing in my head.

Updating you was a passing thought at nine months when Baby H was standing and trying to walk.  He was already saying words!!!!  But we’ve been basking in the milestones, and once again, I was just so tired between the kids and working.

Then Baby H got sick. I got the call from daycare and picked him up.  His temperature shot up to 104 and we made our first ER visit.  My girls had never had a fever this high and I was out of my mind with worry. The ER very condescendingly let me know we were overreacting and sent us home.

That night the fever climbed to 105.  We rotated ibuprofen every four hours religiously and continued to call the doctor with updates.  The next day, I made a quick run with the girls to get more ibuprofen.  That’s when I noticed that something was wrong with my neck.  I tried to turn my head and it felt like something “caught” in my neck.

I put it in the back of my mind and went home to take care of Baby H.  After four nerve-racking days of 104 degree fevers it abruptly broke, and Baby H was in the clear!  Somewhere during this time, I had gone to the bathroom to figure out what “caught” in my neck.

After looking closely I realized I had a lump in my neck. As soon as Baby H’s fever broke I called the Drs office to schedule an appointment.  When I told them why I was calling they said, “Why don’t you just come in to our prompt care.”  As soon as I got there, we were the first ones admitted, even though the waiting room was full.  I thought it was strange, but didn’t give it much thought.

The doctor look at my neck and recommended an ultrasound and bloodwork. As I was leaving, he casually mentioned, “We should rule out leukemia just in case.” Talk about your bedside manner!

Within the hour, Baby H and I were sitting in an ultrasound clinic and the lump was being scanned. I hadn’t been able to resist googling and knew that a cyst was a possibility.  I asked a few questions, and the tech told me enough for me to know that this wasn’t the case.

A few nurses came in to entertain Baby H while I had a very extensive scan.  The tech then asked me to go to the waiting room. I didn’t even know ultrasound clinics had waiting rooms!  After about 15 minutes she came back to tell me that the doctor would be giving me a call.

At this point, I knew that something was wrong, and it was more serious than I hoped. My mom has thyroid issues, so that seemed to be a strong possibility. The  urgent care doc said I needed to get into a specialist and he was going to make a call to an ENT clinic.  Within the hour, the clinic called me and they were going to get me in that day.

Three appointments in one day! I called my husband to let them know this was getting serious.  The ENT reviewed my ultrasound and talked about abnormal things in my thyroid and a growth with bloodflow. He wanted me to get a CT and a small biopsy so that they could learn more about the mass in my neck.

Just seven days later, my head & neck CT quickly became a head, neck & chest CT. I knew. I just knew, when they added the extra CT without telling me that something very serious was wrong.  The radiologist confirmed it.  Before he even performed the biopsy, he turned to me and said three words that turned my world upside down.

“You have cancer.”

 

 

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