Wednesday, December 25, 2013

Two down, ten to go. I can do this?"

5 days post chemo treatment number two (of twelve), and I'm sitting here in a daze. My second round of chemo was a doozy, to say the least.
Accessing my port was a nightmare, only because something made me light-headed. My mom and I wonder if it was the strong alcohol cleanser used to clean my skin. I also wonder if she flushed my port to quickly. Either way, I nearly passed out. Luckily, my sweet mom was there to talk me through it. It was the worst dizzy spell I've ever had in my life.
Getting my chemo drugs wasn't bad at all because they administered Emend at the beginning of my treatment, instead of the end. And it wasn't bad because they haven't given me Avastin yet. I left the chemo clinic on Wednesday tired but not overly sick.
I did okay on Thursday, too. I was severely fatigued and unable to touch anything cooler than 70 degrees, but not sick. Friday was pretty much the same. My parents took me to have Merle (5FU pump) removed and so I could have some more fluids and anti-nausea meds administered. Friday night was basically a snooze fest.
Oh hello, Saturday. Thank you for beginning at 3 am with the pukes. I especially appreciate the pain in the right side of my face and upper back that won't go away AND the anxiety I've had at the thoughts of getting my first Neulasta injection.
I was the first patient to arrive at the chemo clinic Saturday morning, and for that I was very glad. Another bright spot--I was given enough fluids and anti-nausea meds before the port access was removed to make it home. And the Neulasta shot, IN MY STOMACH, didn't even hurt. I had those few, small victories going for me upon my return home.
Saturday evening, I was sick. Very sick. And I longed for my Emend. The anti-nausea regimen we tried on this chemo treatment did not work at all. Sunday was a blurry mess, too. I'd tried to get up. I wanted to get up. But I couldn't. The fatigue and nausea kept me in bed for the entire weekend. And most of Monday, and half of Tuesday ... Christmas Eve.
But now, it's Wednesday. And I'm up. I'm showered. I'm dressed. I'm feeling okay. I'm pacing myself because I will be up all day today ... if it kills me. It's 4:30 in the afternoon, and I've yet to sleep. Hope I can make it until 9pm, my bedtime.

I'm still optimistic. I had a brief moment of despair yesterday after reading my most recent CEA levels from my online medical records. My CEA has gone up. Panicked, I researched this scenario and have learned that often times at the beginning of chemo treatments, CEA values will flare. Especially since the cancer is dying. I also have to remind myself that everyone is different. My cancer adventure isn't going to be like anyone else's so I can't freak out about things I'm not informed about. 
Mental notes for my next treatment: 
~ Accessing and un-accessing the port isn't painful. Don't pass out. 
~ Neulasta will keep me safe. Stop worrying about it.
~ Ask what anti-nausea meds are being given BEFORE they attach them to your port.
~ Insist on Emend. Emend is going to save me from losing many more days to drug-induced slumber.

I'm going to get used to this. It can only get better, right?

Me leaving the clinic after treatment #2

Carry on,

Thursday, December 19, 2013

"The Merles"

My daughter and I are "namers", meaning we love to give inanimate objects names. For example, my cancerous tumor was affectionately named, "Lucifee". So we thought it would be most fitting to name my 5FU pump.
We named it Merle, after one of most loved/hated characters on our favorite TV show, The Walking Dead
But why Merle? It's simple really. Both my pump and Merle Dixon are loud. And Obnoxious. And in the way. But as much of a irritant as they are, they both save lives. So, to the Merles, we appreciate your service and loud, life-saving ways.

The Merles

Carry on,

Monday, December 16, 2013

"The apples taste like paper."

Okay, let's talk side effects because let's face it ... one of the biggest ordeals when during with chemotherapy is managing the side effects of the chemo drugs. 
The side effects I've been told to watch for are neuropathy, cold sensitivity, weight loss, loss of appetite, mouth sores, susceptibility to infection and illness (duh), change in the sense of taste, fatigue, nausea, diarrhea, hand-foot syndrome, and a few others. More than likely, I'm not going to lose my hair. Believe me, that's one side effect I'm glad to have avoided.
The ones that scare me--the neuropathy, hand-foot syndrome, and mouth sores--scare me because there is pain involved. The neuropathy is especially intimidating because in rare circumstances, those side effects can become permanent. What is neuropathy? It's this: "Neuropathy (painful nerve damage) is a common side effect of oxaliplatin. Symptoms include numbness, tingling, and even pain in the hands and feet. It can also cause patients to have intense sensitivity to hot and cold in the throat and esophagus (the tube connecting the throat to the stomach). This can cause problems (such as pain) swallowing liquids. If you will be getting oxaliplatin, talk with your doctor about side effects beforehand, and let him or her know right away if you develop numbness and tingling or other side effects." Well wouldn't you know it? Oxaliplatin is one of my drugs.
Following my first chemo treatment, I've only experienced a few minor signs of my projected side effects.
*I've had a few symptoms of neuropathy. I've experienced the cold sensitivity. I haven't had a piece of ice since during the first treatment. It hurts to swallow it. I drink room temperature cola and water. Even slightly spicy foods burn the inside of my mouth and that heat trickles down my throat all the way to my stomach. Swallowing feels so weird to me right now, like my throat is swollen but not like a painful sore throat kind of swollen. Obviously it's hard to describe. Regardless, I really miss ice.
*My mouth is already messed up. My gums feel furry. Yes, furry. Regardless of how many times I brush my teeth, my mouth still feels like there is a weird film coating the entirety of it. My gums are really red and have started to bleed, too. Bummer.
*I was tired directly after chemo, but that seemed to have subsided quickly.
*And last but not least, one change in the taste of a food. I love fruit and sadly, apples taste so funny to me right now. For example;
"Here mom, try this to-die-for apple dip your bestie made you," my adorable daughter said. 
Mmm, that does looks good. Grab, swipe, insert, chew ... "Yuck."
I spit what was in my mouth into a napkin and took just a piece of apple. I chewed it, then spoke the first words that came to mind. "The apples taste like paper."
"Like paper? Mom, how would you know what paper tastes like?" she asked.
"I'm just telling you what my mind is telling me these apples taste like, and that's paper."

So there's my first accounting of the side effects issues. I hope with all my might that the neuropathy doesn't get too bad throughout this aggressive treatment plan. Apples tasting like paper, I can deal with. Painful nerve damage, not so much.

Carry on,

Wednesday, December 11, 2013

"One down, eleven to go."

The week after getting my diagnosis, I began treatment. The first step was seeing my surgeon, Dr. H. to discuss a portacath placement.
I really like all my doctors. But Dr. H ... he's one of my favorites. He's always been sincerely interested in my health. Meeting with him to discuss my diagnosis and port insertion, he responded just like I thought he would; with genuine concern.
He worked me into his busy schedule. The next day, I arrived at the surgery center, sick and already throwing up. They prepped me for surgery, gave me some of my "magic milk" (Propofol), and put a chemo port in my left clavicle.
My port ... and favorite flannel

I woke up sore and still nauseated. The thought of going to the chemo lab for my first treatment only added to my discomfort. I was pushed in a wheel chair from the surgery center to the cancer clinic but I don't remember much about that ride. My head hurt so badly and the nausea was nearly unbearable. My entire left side was sore and stiff.
I sat down in a recliner in the chemo lab and I honestly can't say that I remember a collective 5 minutes of the rest of that day. What I do remember; my neighbor (and chemo nurse) A getting me a blanket. I remember looking for my mom, numerous times, making sure she was there with me. I remember hearing my best friend M's voice. Aside from that, I don't remember much else.

My first chemo treatment. Flowers from my boss.

Hours later, I was sent home with a pump and told to return Friday to have it removed. I did just that. I slept for the next 45 hours straight and still sick, I returned to have the pump removed and to have fluids and anti-nausea meds administered.

Enter Emend. This drug is my favorite. I love it so much. I took an Emend pill the day that my pump was removed, then one each for the following two days after. I had NO NAUSEA. I was so tired, and my port bothered me immensely, but I wasn't sick to my stomach.
"I'll take it!" I told John. I had survived my first chemo treatment.

One down, eleven to go, I thought. I can do this. I'm going to complete my chemotherapy treatment and be cancer-free. I will survive. I believe that I can survive this. I said this to myself often during the days following my first chemo endeavor. I didn't really recover that quickly. The following Wednesday was the first day after my port surgery and chemo treatment that I had stayed awake all day and had been in bed during daylight hours.
Regardless, I really do believe what I told myself after chemo. I will survive this, and I will be a stronger person for it.

Carry on,

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,