Friday, November 29, 2013

"I'm sorry."

The hardest thing I've ever had to do ... tell me two teenage kids that I have cancer. It was heart wrenching to say it but to watch them respond, oh my God. Their expressions truly broke my heart.
My son is quiet and a worrier. He internalizes things and even though he's logical, he tends to be a little pessimistic at times. He genuinely wants to help me and for me to be well. He's smart. To see him tear up hurt me but to imagine some of the thoughts running through his head hurts more.
My daughter is talkative. She's expressive with her feelings. After a good cry and many hugs, she flat out told me that she's not going to worry but that she's going to stay focused on happiness and goodness. I know she's strong but I worry that sometimes it's a front. 
Telling them so far has been the worst part of finding out that I have cancer. 

Carry on,

Wednesday, November 27, 2013

"Was I just told that I have ** ****** to live?"

The day before Thanksgiving, I was finally FINALLY back to see my oncologist.
"Okay, we have the results of the additional testing and the PET scan. I presented your case at tumor board and I've consulted with my colleagues." He read from my ever-thickening medical chart. "The PET scan showed a few things of concern."
He told us--my mom, husband and I--that there was a thickening of my Sigmoid colon. Two of my lymph nodes lit up on the the scan as well. He informed me of a benign mass in my breast and a calcification on my right lung. The conversation felt casual. Quickly, it turned unpleasant. "There are two very small mets on your liver. They are so small, they have only been visible on the PET scan."
What does that mean? "Ok, so ..."
He took a deep breath and said, "You've got Stage IV colon cancer."
"Stage IV?" I repeated in disbelief. I wanted so bad, with ever fiber in my body, for it to be Stage II or III. Those stages are curable. Most of the time, Stage IV is not.
Dr. W. told me of a few of his other patients with the same cancer as mine, good stories of their long, healthy lives. I was relishing in his optimistic words when he said, "So .. with that being said, your prognosis is ** *****." (What he said was an amount of time. At this time, I'm choosing not to disclose that information in case my children happen upon this blog.)
Dr. W. moved right on. He told me about my treatment plan and I forced myself to pay attention. "We are going to be aggressive. I want you to start chemotherapy as soon as possible."
12 treatments, every two weeks. Something called Avastin. Something called FU. Something called Oxaliplatin. A chemo port. A pump in a fanny pack that I'd carry for 46 hours. On what days again? Is my mom taking notes? 
Dr. W. finished the consult and shook my hand. He exited the room, leaving his nurse K behind. A silent moment passed after the door closed behind him until I said, "Wait a second, what just happened? Was I just told that I have ** ******* to live?"
K spoke up. "That part of your prognosis is standard. You can't focus on that because you are going to live a very long life."
I looked up at her. She was being sincere. With tears in my eyes, I said, "Okay."
K educated us about the port, the pump, what to expect as far as treatment scheduling went, etc. Standing in the hallway after the appointment, I was overwhelmed. "Wow. This was a heavy appointment."
K gave me a hug and whispered in my ear, "You are going to live a very long life."
She had said it twice and I couldn't help but to believe her. I thanked her, took my samples and treatment plan papers from her, and walked out of the clinic with my husband and my mom.

So, here I sit. 41, in the prime of my life, enjoying my family to the fullest ... with stage IV colon cancer. Needless to say, I'm in shock.

Carry on,

Wednesday, November 20, 2013

"I'm always fasting."

After the colonoscopy, I waited patiently to meet with my oncologist, "Dr. W". My appointment was just a short 48 hours after the scope, but those 48 hours felt like 48 days.

Needless to say, finally meeting Dr W. was a bittersweet event for me. I was there to discuss such a dismal topic but to finally have that discussion, it was a much needed relief.
I went to high school with Dr. W, well, he was a senior when I was a freshman. He's a very smart man, very personable. He's very good at what he does. And I'm not using the word very loosely here. He's a very good cancer doctor.

My husband, mother, and I talked with Dr. W for an hour and a half. He was thorough. He educated me about the pathology report and we discussed the next steps.
"We need to do an EGD and a PET scan. We need to send the pathology off for more testing and in two weeks, we'll meet again and discuss your diagnosis, prognosis, and treatment plan."
Two weeks? Are you kidding me? "Sounds great," I said.

The next Monday, I returned to same-day surgery. "Welcome back," Pete said.
The young male nurse, the only person I have snapped at to date, greeted me as I was being wheeled into my second endoscopy procedure, an EGD. I lovingly named the EGD, my "face probe" and like I had for the CT scan and surgery, I had been fasting.
P gave me the "magic milk", scoped my upper GI for abnormalities, and not surprisingly, sent me packing with a clean EGD report.

Two days later, in a rain storm, my husband John drove me to Huntsman Cancer Hospital in Salt Lake City, Utah for my PET scan. Just to preface a bit ... I'm a researcher by nature. I research everything, and I mean EVERYTHING  so that I always feel as prepared as possible when embarking on new adventures. But for some reason I was misinformed about this test, and went into it blind.
So? So, the PET Scan has been the hardest thing for me physically to endure to date. Harder than surgery, or post-surgery, or nausea, or the colonscopy prep, or the pain before the tumor was removed ... the PET scan kicked my butt.
Thinking it was going to be similar to the 20 minute CT scan I had had weeks before, I was shocked when the Radiology tech said, "Let your husband know you'll be about two and a half hours."
Huh? "Will do," I said.

Enter my digestive tract please. Even with a beautiful, clean, innocent, pristine colon like mine, nausea and surgery-induced constipation have plagued me since birth. I knew the second Rad tech entered the room holding two bottles of berry flavored Elmer's glue, er .... contrast, my gut was in trouble. She was shaking the crap out of them as her colleague struggled to find a vein for my IV.
"Why have you lost so much weight recently?" she asked.
Poke. Ouch! "Because I have some sort of cancer in me," I said, my tone one of question.
"What kind?"
"Um, my oncologist thinks it's colon cancer, but right now we don't have a for sure primary."
"So then ... I guess I don't understand your weight loss."
"Maybe it's because I'm always fasting."
"Fasting? On purpose?"
Poke number two and a sigh from the poker. Finally. "No, because of all the surgeries and test. I'm always fasting."
"Oh. Well, we need you to drink two bottles of contrast over the next hour and a half. Then we'll have you use the restroom, then we'll start the actual scan."

I did my best to drink two bottles of barium. I managed to choke down 3/4's of one. After sitting in a recliner in a freezing cold room and waiting for the radioactive isotopes that had been pumped into me through the IV to explore my innards for well over an hour, I was beside myself. The pain in my abdomen was fierce, the kind of pain you've felt before, the kind that scares you. It brought me to tears. When they finally let me walk to the restroom, I thought I has seriously died and gone to heaven.
I entered the PET scan lab and glanced at the table. How long could this scan possibly take? I thought.
"This scan takes about 35 minutes from start to finish. We scan you in sections, give you some more contrast through your IV and then there are some breathing instructions at the end," the Rad tech says. She pointed at the thin, metal table. "Oh, and you can't move or we'll have to start over."
Why can't I have some 'magic milk' then? Seriously? "Ok. I'll do my best."
They strapped me down, and I felt pretty comfortable ... for the first 15 minutes or so. Then I got a tickle in the back of my throat. The burning in my lower back had settled in nicely, too, so nicely that I barely noticed the guy pump two huge syringes full of radioactive stuff in my arm. The breathing instructions were a welcomed indicator that I was almost done. A few minutes later, with a burning backside and a full, glow-in-the-dark bladder, I finished the PET Scan.
"Well if I didn't have cancer before, I've got cancer now, yes?" I teased, making light of the ordeal with the same guy that had given me my IV.
"Actually, the stuff you've got in you now would kill cancer, not create it," he said, just before putting a Sponge Bob Square Pants band-aid on my newly bruised arm.
Okay? "Okay," I said.

I walked into the lobby and noticed my husband's eye grow with disbelief with each step I took closer to him. "You look like you just got beat up."
I sat down in the closest chair and sighed. "I feel like I just got beat up."
He drove me home and as my body filtered out what I thought to be gallons of contrast, I was hurting. Regardless of my physical anguish, my spirits were lifted knowing that all the tests Dr. W. wanted me to have were over.
I have a week now, a week to rest and to not have any tests or appointments, I thought to myself, resting in bed that night. I was elated to have some time off from appointments and fasting even though I knew, deep down, that I wouldn't truly be able to relax until I knew for sure what was going on inside my gut.

Carry on,
Berry-flavored Elmer's glue, er Contrast

Monday, November 11, 2013

"'P' cancer is a death sentence for me."

A few days after my phone call with Pete, I found myself recovering comfortably from my first colonoscopy. The gastro doc walked in and said words that I will never forget. "Your colon is clean, completely clean. We didn't find a single polyp."
I looked at my mom and I could tell from her expression that we were both thinking the same thing. You see, pancreatic cancer was mentioned on the pathology report; "The histologic features and immunohistochemical profile favor colonic origen.  Pancreaticobilliary origen cannot be excluded but is not favored.  Clinical and radiologic correlation is needed."
My mom is a very smart woman. She's educated and has a lot of life experience that has made her not only book smart, but street smart, too. We talk openly. We had talked about colon cancer and pancreatic cancer. We knew the different prognoses of both types of cancer, so hearing that my colon was clean was disturbing to say the least ... for both of us. 
Thankfully, my mom mentioned the word "pancreas" and the gastro doc replied, "I didn't see anything on her pancreas on the CT scan."
Too late, I thought. Say what you want but the cancer isn't in my colon. The pathology report says the next place to consider is the pancreas. 'P' cancer is a death sentence for me.

I left the hospital so confused; not elated by the good news of my sparkling clean colon but wondering if I had pancreatic cancer.
Later that evening, I discussed my thoughts with my husband and he told me that everything would be alright. I tried to believe him. I wanted so badly to believe him, but after sneaking my phone to bed and reviewing the dismal statistics associated with pancreatic cancer patients, I cried myself to sleep.  

Carry on,
Pre-exploring-of-my-colonage ... 

Friday, November 8, 2013

"Well ... I have colon cancer."

The day after I met with Dr. L, I was inundated with appointments. The colonoscopy was the most important test on the list of to-dos.
It was a Friday and I was sitting in a parking lot up north somewhere when I took what the longest scheduling phone call to date. The hospital had called to preregister me for the the scope. "Can I transfer you over to a nurse to do a medical history?"
Do I have a choice? I thought. "Sure."
Five minutes later, a chipper, youthful male voice said, "Hey Kristin, It's Pete. How are you today?"
Um, what are you, 14? "I'm fine, thanks."
"Now looks like ... yes, you're coming in for a colonoscopy. You're too young for a colonoscopy!"  He chuckled. "Why are you coming in for that?"
"Well ... I have colon cancer," I snapped. Dang it, I said to myself, be friendly.
I could almost hear the awkwardness through the phone but Pete recovered quickly. We finished the phone call and I made myself a promise not to snap at anyone else, no matter what they said to me, again.

Carry on,

Favorite flannel.

Wednesday, November 6, 2013

"Say it again, the word that starts with A."

"You have what's called a metastatic Adenocarcinoma."
By this point, I was spinning. Sitting in Dr. L's office, he had just gone over the basic's of the pathology report. Certain words echoed; malignant, colon cancer, not good, staging.
My mom, who is notorious for asking really good questions, inquired about the pathology report and I looked at my husband. I could see from his expression that the news was just as disheartening for him as it was for me.
I hadn't retained much information and I had to physically shake myself to focus. "So, what's the plan again?" I asked.
"We need to to do a colonoscopy," Dr. L said. He talked of tests and appointments that needed to be scheduled with urgency.
I couldn't help but to interrupt him. "Say it again, the word that starts with A."
"Thank you," I whispered.
I watched my husband's thumb gently stroking the top of my hand and pretty much shut down from that moment on.

Much later that night, while I waited for a pain pill to kick in, I decided to start this blog. I'm going to document the next 300 days of my life with cancer, not for anyone but me.

Carry on,

Super optimistic ... or at least faking it.

Tuesday, November 5, 2013

"I'm only 41."

Hello. My name is Kristin. I'm a 41 year old mother of two and wife to my college sweetheart. I'm a patriotic, dorky "tennis" mom that loves music, traveling, scrapbooking, reading, writing, soda pop, and spending time with family and friends. And ... I've got cancer.

My back story goes a little something like this; I'm a relatively healthy female. I've always struggled with a little extra junk in my trunk, but nothing over-the-top. I've given birth to two great kids. Five years ago, I had my gallbladder removed. I don't drink, smoke, nor abuse any substances of any kind. I never have. I practice safe living; i.e. I wear my seat belt, I don't put things inside me that I know could harm me, etc. I sleep without pain and spend my waking hours without pain. And aside from a little viral Pericarditis, this is the extent of my medical history. Snooze fest, yes?

Here's where my story really starts. In August of 2013, this weird, tenderness appeared in the bottom of my torso. Front and back, the pain was constant, prompting me to breakdown and call my primary care physician, "Dr. L". He did a physical and a pap, the results from both exams normal. He then ordered a CT scan of my abdomen, and wouldn't you know it? The CT showed an abdominal mass. I had it surgically removed at the end of October and was told that the tumor would be sent to pathology for testing.
Then I waited. And I waited. For over a week I waited until ... Dr. L called me.
"I hate to give bad news over the phone, but the pathology on your mass came back abnormal," he said.
"Yes, abnormal as in malignant."
All I could think was that, "I'm only 41."
I don't remember the rest of the conversation. I broke down. I struggled to dial my husband's work number. After asking him to come home, I called my mom and asked her to come over. I then spent the next 30 minutes figuring out how to tell them that the recently removed mass we had mockingly called, "Lucifee" was malignant.
It went well, telling my husband and my mom that the mass was malignant. They are both supportive, strong individuals. A quick bit about my husband, John. This man is the most patient, logical, realistic, supportive man on the planet. We've been married for over 20 years and he's provided me with stability, security, and simplicity. So when he tells me everything is going to be alright, I can't help but to believe him. He said that to me. He says those exact words to me a lot. It's because of him I was able to enjoy that evening with my kids, knowing that the next day, I was to meet with Dr. L to discuss the pathology report at hand.

Carry on,