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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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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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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C.A.N.C.E.R

“You have cancer”.

Because we knew things were getting serious, my husband had accompanied me to the CT and biopsy.  I never expected a radiologist to utter those words.  Typically, a radiologist doesn’t tell you ANYTHING. They dictate a report and your doctor calls you with the result.  The ultrasound tech looked at us with shock after he uttered those three words and walked out the door.

“Did you have any idea? Are you okay”

I can’t speak for my husband, but after all my years of infertility treatment I know how to work Dr. Google to my advantage and had poured over the literature and knew the small list of what this neck growth could be.  Cancer was a surprise, but not totally unexpected.  Being told without a biopsy to support it WAS a surprise and a concerning one.

The radiologist came back into the room and was apologetic.  He must have realized the news was new to us, and he explained that my tumor on the CT extended from my neck to below my heart. It was a very large tumor, and in his experience, he thought the results of the biopsy would show that I had  Lymphoma.

More was said, but my husband and I just held each others hands. All I could think about was that I needed to be here to see my babies grow up.  They are just babies! They can’t grow up without their mama! How is my husband going to handle three kids under three all by himself?

 

 

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