Cancer Ever After

Musings on Infertility, Adoption, Parenthood and Cancer

Good News Day

It’s funny, I’ve been going along, focusing on life in chunks.  If I can make it to bedtime.  If I can be there for the kids in the morning.  If I can make it through this conference call without puking (there was a very unfortunate instance while I was on the phone with the entire executive committee).

For me, cancer has tightened my lens.  On rough days, I focus on the next hour, something small and manageable.  On good days, I plan to take the kids to the park or to see the animals, but don’t think of anything outside of managing the next three hours.

I don’t make any plans for two weeks out, I just don’t know what life will be like then. So why is the funny?  My lens suddenly shifted when it was time for my PET scan.  It’s pretty standard for ABVD Chemo to do a PET scan after 4 treatments (2 rounds) to see how you are responding. Honestly, until it was time for my PET scan, I hadn’t even worried about how I was responding, my focus was simply on taking life on day at a time and making it to the next treatment.

As soon as they mentioned the PET scan, anxiety and worry came in.  And then they dropped the ball that I would have to wait a week for results.  Every minute felt like a day. It was hard to sleep, I was so anxious to know the results.

While, I don’t write about it all the time, I’ve poured over medical studies and know the odds.  80% of people of my stage come back with a negative PET scan at this point, 20% don’t, and 2.5% show little to no response and are considered refractory, which is very difficult to treat. If you are in the 20%, your rate of recurrence of Hodgkin’s is significantly higher. I wanted desperately to be in that 80%.

I’m willing to do whatever it takes to beat this, but I’m also ready to be done.  I’m tired of being a crappy mother who is sitting on the stairs instead of pushing her kids in the swing. I’m tired of making them cry when they see me puke, or seeing their faces drop when mommy is too tired to do something. I want to go back to being able to remember things and feeling like I really contribute something to my company and my job.

Everyone has been so wonderful and we have so much help, but I miss being me.  I want to go on a date night with my husband. I want to be able to stay up late enough to watch a TV show after the kids go to bed. I want to take my kids berry picking, to the Zoo, out for breakfast.

I want normal.

PET SCAN CAME BACK NEGATIVE

I still have to finish four more chemo treatments (2 cycles) and radiation, but I’m a little more hopeful that normal is out there.

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X-Rated

Give me a “Two”. Give me a “B”. Give me an “X”?

After the nurse shared the notes on the bone scan, we waited impatiently to speak to the ENT. After a week, we finally had our chance, and the meeting was a complete bust.

He confirmed that the tumor was about the size of a football and (previously) extended from my chin to below my heart basically. The PET scan also confirmed that the tumor did not extend below the diaphram or into the liver or spleen, which was definitely good news.  He too mentioned the bone activity, but refused to comment as to what this meant by stage – the oncologist was going to have to weigh in.

Another week of waiting.  We had actually scheduled our meeting with the oncologist as soon as the first biopsy came back and three weeks was the soonest we could get in.  The ENT kept plugging away at the necessary tests while we were waiting on that visit so that we could start treatment sooner once we were in with them.  And still.  We had to wait another week.

I googled, researched, we looked at the PET scan ourselves.  Everything we could find said that if it’s in the bones it’s stage IV.  We researched the different in treatments. If it was stage II, it was an “easier” chemo.  A chemo that tends to be better tolerated.  If it was stage IV the treatment was viewed as universally more difficult.

The difference in stage would make a world of difference in how I could take care of my babies.

Our visit with the Onc finally arrived. First he asked me a series of unending questions in detail about the symptom questionnaire I had filled out. Then he mentioned stage.  We held hands and our breath.  “You are difficult to stage. ” Not a good start.  “But I think we’re going to put you at IIB, because you appear to have some symptoms, and research has shown people with symptoms often need to be treated as if the cancer is more advanced.”

 IIB?

We were elated!  “The radiologist is going to have to weigh in as to whether or not your are considered an X as well, because your tumor is borderline.  I’d like to know more about your sed rate……..” I’m not sure I caught everything he had to say here. My mind was stuck on  STAGE II!!!! I finally worked up the nerve to ask about the bone activity.  The Onc explained with lymphoma it’s pretty common to see bone activity on the scan, but they look for signs of bone involvement.  Basically with bone activity the bones show up pretty evenly on the PET scan. With bone involvement there are bright spots in the bones that show active growth of cancer. Bone activity is normal, bone involvement is bad news.

Thank God.

We finally landed at me being stage IIBX for treatment purposes.  My tumor is slightly shy of the size requirements for “Bulky” which is the X, but because it’s borderline, they looked at my sed rate (rate of inflammation) and it was 29.  Over 30 would make me Bulky.  Basically neither the Onc or the Rad Onc was comfortable NOT treating me as if it were bulky, because if you under-treat and it comes back, you have much more difficult treatment options for a recurrence that are tolerated far less.

We are proceeding with caution when it comes to staging. The difference between just II and IIBX is an extra month of chemo and three weeks of radiation.  I’ll take it if it means the cancer will be gone.  I’d rather be cautious to avoid a recurrence.  It’s also not so much additional treatment that potential long-term effects increases exponentially.

As we left the appointment we were giddy, laughing and hugging each other. Stage II! Never thought I’d celebrate having Stage II Cancer, but celebrate we did.

 

 

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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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