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. 
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.
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.
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.
Cancer Ever After 