"Isn't that great news?"

I got some phenomenal news yesterday in the form of a blood test result I read on my online medical records. Every so often, my oncologist performs a CEA blood test. CEA stands for Carcinoembryonic antigen. When the serum levels are raised, this test can be used as a tumor marker in clinical tests, primarily with metastatic dissemination of colon carcinoma cells. A normal person without colon cancer will have this marker read approximately 2.5 ng or less when tested. (Please note that I'm no expert. What I state throughout this blog is how I understand things.)
So on 11-13-13, I had my first CEA levels drawn. 42.15 ng. Ouch! That's high. Yep. I have colon cancer.
Then on 11-27-13, my CEA registered at 35.56. Yes, it's gone down. 
Enter 12-18-13. This CEA reading upset me. See? I blogged about this already. It ran at 43.55 on that draw. Despair.
But ... but! My CEA levels from the blood draw on 1-15-14 read ... drum roll please ...
5.9.
Five point nine! 
Can you believe it? 
The chemo is working. All of this is working. I was sitting with my husband when I read the test results. He teared up he was so elated. (Sorry J, had to share that.) I told both my kids and called my mom. I texted my bestie and close friends. "Isn't that great news?" 
"Yes!", all of them said, rejoicing with me.

I have a renewed faith in what I'm doing here, and for the first time, I feel a new sense of strength to better handle what my healing, shrinking body is going through. Why? Because my cancer treatment appears to be working ... and I don't want to jinx it. Happily, I can see reason, purpose, and a light at the end of my chemo-tunnel. Isn't that great news?

Carry on,
~K

"But my colon is clean."

Do you know how many times I've said those five words in the last two months? Probably a hundred. No, a thousand. Why? It's simple, really. My colon is clean, and I'm talking really clean, not a single polyp or red spot of irritation. Yet I have stage IV colon cancer. How does that happen? I'm still wondering what twisted works my body was going through when the metastatic mass in my abdomen formed and started growing.
I've been asked a lot how I was diagnosed with colon cancer when my colon is completely free of active cancer cells. It's kind of hard to explain. I try to revert to what my oncologist Dr. W. said to me at least 5 times during the appointment when I was diagnosed. "I always bow-down to pathology."

Let's review what some of the reports and pathology has said, shall we?
" The mass returned as metastatic adenocarcinoma with a histologic and immunohistochemical features suggestive of colonic primary. She had colonoscopy performed on Monday, November 11. This showed no colonic neoplasm."
"The histologic features and immunohistochemical profile favor colonic origen. Pancreaticobilliary origen cannot be excluded but is not favored."

"Immunohistochemical stains are received back from ARUP on 11/4/2013. This staining pattern argues against breast, lung, renal cell, adrenocortical, endometrial, ovarian, salivary, bladder, mesothelial, and hepatocellular carcinomas. Pancreaticolbiliary origen remains in the differential. Colon origen is favored."

"41-year-old female with what appears to be metastatic colorectal cancer with undetectable primary by colonoscopy. Her PET CT scan results have been reviewed in detail. Molecular classification by bio-theranostics returned as a 96% probability of colorectal adenocarcinoma."

What does all of that mean?

I honestly don't know. It's hard for me to understand and even harder to explain. When I try to verbalize how I have advanced colon cancer but a clean, intact colon to my close friends and loved ones, I struggle to find an explanation that makes sense ... to them or to me. I chuckle and stumble my way through a lay-man's rendition of my situation. But most of the time, it just confuses me and my listener. 

Sigh. I have colon cancer. But my colon is clean. I count myself lucky on the latter, knowing that colon surgery/resection/removal will not be a part of my cancer treatment plan. I'm lucky to never have to deal with a colostomy. Really, I'm lucky on many levels right now.

But I often wonder if it would've been easier, less confusing and shocking, had they found a tumor in my colon. At least it would feel more validated, more understandable. Maybe I'm still in shock. Maybe not knowing where the mass came from nor how it started is a good thing. 

For now, my plan is to keep in control of my pain, my digestive system, and my emotions. I'll mock having "old man poop" cancer for now, knowing that my colon is clean and the cancer is hopefully dying.

Carry on,

~K

"Four down, eight to go."

Hoping that treatments would become more tolerable, I'm deeply saddened to announce that my last treatment was a suck-fest. So many things that could've gone right, didn't. I received a blood transfusion ... that I didn't need. My 5FU hates me so badly, this hate manifested in my hands, feet, and mouth. (I will have my 5FU dose reduced during the next treatment. If I don't, it might kill me.) During the 46 hours with Merle, I threw up a lot, more so than normal. My fingernails look like I'm a chain-smoker. And my hair is still thinning. It's everywhere, quite literally everywhere, except where I'd like it to be.
But I promised myself I wasn't going to do a play-by-play for this mistake-ridden treatment. Instead, I'm going to mention the brighter points of #4. I seem to have recovered quicker than I ever have before. I'm learning to stay on top of my pain and my digestive tract. I'm learning how to pace myself so that I'm not napping from 2 to 8 pm every day. These things are very good.
My emotions seem to be evening out a little, too. I get down sometimes, very very down, but I'm quick to bounce back and remember all the good things I've got going for me.
I've got my mom, my rock, my constant through treatment and recovery that keeps me focused on "May 9th" and remission. My mom reminds me that I will go into remission someday. This has been huge for me. She is so sweet. She has very little hands. When I was getting my IV for the blood transfusion, she wrapped both her hands around mine. The were soft and warm and in my focus on them, I didn't notice the needle stick. I have to mention my "poppa" (stepdad), too. He has been so good to me, driving me around, making sure I get to my treatments in bad weather, picking up food and treats ... the list goes on and on. But the most important thing he does for me is that he loves my mom. He supports her and cares for her, which is why she is able to focus on me so much right now.
I've got my husband, John. Not one time, not even in his most tired, frustrated moments has he been short or frustrated with me. Oh I'm sure he feels it inside, but he hasn't shown it, not one time. He's become both father and mother at times over the past few months, and our family has greatly benefited from his fortitude and ability to get things done. He rubs my hands and feet at night. He gets me ice packs at 2:45 am without complaint. I know for a fact that my world would crumble into chemo-hell if I didn't have my husband, my glue, holding everything together.
My kids, both teenagers, have been an unbelievable source of comfort and cheer for me. My son is willing and eager to help me. He wants me to be comfortable and I can tell it bothers him when I'm sick. He's funny. He makes me laugh daily and he's one of my very best friends. My daughter is one of the best distractions in my life right now. Her ability to mentally remove me from my "cancersumption" is amazing. She talks and talks, not about cancer or chemo, but about trips we've taken, things we've done, trips we want to take, and things we want to do. Without the love and support of my children, this adventure would suck a thousand times more for sure.
I've got wonderful siblings, extended family members and close friends that stop by to check on me, drop treats off at my front door, send me messages of encouragement, and extend genuine sentiments of hope and love. My beautiful sister-in-law brings my family dinner every Tuesday night. (My family looks forward to Tuesdays because of the food. I look forward to seeing my sis-in-law and handsome toddling nephew.) My close friends and bff text and call daily. I can't imagine navigating "CancerLand" without my incredible support system of family and friends. I know my treatment would greatly suffer without it. The encouragement I get from others has really made an huge, positive impact on my attitude while in chemotherapy.
Now for some photos:
This is what I see when I look around me during treatment. Don't be jealous of the view ... I know it's truly awe-inspiring.

Poisons ... lots of them. Yummy.

Here comes the blood.

"Vampires are stupid." ~Creed Alexander

5FU Hand-Mouth Syndrome. Good times.

Fluids, chemo's "bully".

Me and my favorite blanket at the end of #4.

Carry on,
~K

"The chemo made me do it."

Abstract art = NOT

See this picture? No, it's not an abstract piece of art work. Its my hair ... in my toilet ... for reals.
I'm not expecting to lose all of my hair, but I'd dare say that I've lost 50% of it. Yes, I have a lot of hair. Most people can't even tell that I've lost so much hair. But even so, dropping handfuls of hair in the toilet after each combing has been beyond disheartening for me. It's been kind of heart wrenching, actually.
So my mom suggested that I cut my hair, to lighten it up and make it more manageable. I've read online at a couple of my cancer support sites that shorter hair doesn't look as abundant as longer hair does in the garbage can, either.
So, I went to my hairstylist of a decade, M, and had her cut 5 inches of thinning hair from my frizzy mane.

Before

Sitting there watching her chop off curly locks of my dark hair, I suddenly said, "The chemo made me do it."
M laughed. So did the others in the salon. I chuckled but internally sighed. It's true. The chemo WAS the reason that I was cutting my hair. But I hated the feeling that I was in a roundabout sort of way forced into it, forced because it's too painful to watch it thinning away to nothing.
Standing in my bathroom after I had dried my newly-cut coif, I decided that even though the chemo inspired it, the new do was a nice change. I've had really long hair for years. The light, easy, soft length feels good.

After

My thoughts then went to my mother-in-law. Just finished battling breast cancer, her hair is finally starting to grow back. It's thick and beautiful now, but for months, it was gone. My thin, short hair suddenly became a reminder of how lucky I am in certain aspects of my treatment. I really don't want to lose my hair. I still might lose it. But I'm 100% certain that I'd rather be alive with thin or no hair then dead with long, flowing locks.

Regardless, I've decided that the statement, "The chemo made me do it," is going to work for lots of stuff, like when I forget important dates, lose my phone, spill dinner on me, or cuss. After all, it's partly true. Chemo is deeply embedded in my life right now ... whether I want it to be or not.

http://www.customblingapparel.com/category_20/Cancer-Sucks.htm

Carry on,
~K

"Three down, nine to go. Are you serious?"

**Amended/corrected 1-27-14.

Blegh. That's all I can really say about my third chemo treatment. Blegh because I received my first dose of ... *dun dun dun* ... AVASTIN.
Oh, dear Avastin, I don't think I like you. I know that you're strong and that you're going to kill the cancer inside me. I'm appreciative of your mission, I really am. But did you have to mess up my hands and my feet?

**This is actually a side effect from my 5FU. It's too strong, and I need to have the dosing reduced.

Hand-foot Syndrome, courtesy of 5FU.

Did you have to cause me abdominal pain that took my breath away and fatigue so intense that it hurt? Did you have to bring on waves of nausea so brutal they made me panic? Did you have to coat my tongue, mouth, and throat with white fur? That fur makes swallowing a less than spectacular task, I must say.

**I'm thinking all of these side effects are really from Avastin, especially the pain and unbearable boughts of nausea.

Mouth fur - awesome!

Along with my first taste of Avastin, I had my first encounter with a unsavory individual at the infusion lab. Enter *Jim (*not his real name). Loud, rude, obnoxious, inconsiderate ... those are the best adjectives to describe this man. He came in the lab awhile after I did and, of course, he chose a chair across from mine. After threatening to "clock" the nurse administering his IV if she hurt him, he didn't waste a moment in finding someone to talk at. The young kid to my left only had to answer one question and Jim was quickly on a roll. My poor mom and I learned all about Jim's family; his kids moving out of the house, his wife moaning because she had to go back to work, and his "400" guns. We also heard about Jim's Crones Disease. After listening to him describe his "bloody bowel movements" for over an hour, I was seriously beside myself. I declined an additional bag of saline just to get away from him. My mom went down to get the car, and as I slowly put my coat on, he looked up at me and loudly said, "Well you didn't handle yourself very well today, did you?"
I glared at him. I couldn't let the words cocked on my furry tongue from shooting from my mouth.
He shifted in his chair. "My and Jackson there, we've got Crones Disease and we handled our treatment okay."
I couldn't help myself. I pinched the verbal hammer. "Well, I have terminal cancer." My scowl grew angry with my tone. "So, stick it."
I turned and walked out, leaving Jim, his tall-tales, and Jackson in the infusion room to deal with my retort.

This is what Jim looked like, I kid you not. 

Even with all the new and intensified side effects that I've dealt with after my third treatment, I'm counting myself very blessed. I'm lucky that I get to have treatment, yes the 5FU, Avastin, and Neulasta included. I'm thankful that my body is healthy enough to withstand chemo at all.
Even more so, I'm blessed to have my mom with me during all my treatments. She has been so strong and I honestly don't know if I could do this without her. I'm equally blessed to have my husband, kids, best friend M, mother-in-law, siblings, and close friends supporting me when I'm at home recovering. Some cancer patients don't have a support system like I have. Some don't have good insurance or they aren't healthy enough for treatment. I remind myself of these facts every time I get discouraged.
And just to set the record straight ... I don't think that my cancer is "terminal". I just use that word when I mess with people that say stupid things to me. Really when you think of it, every human is "terminal". No one lives forever.
And since I can't end a blog post on that note, I'm going to post one of my favorite quotes:
"In the end, it's not the years in your life that count. It's the life in your years." ~Abraham Lincoln.

Carry on,
~K

"Tattooed Spoons"

My younger sister J suffers from a chronic illness. She lives far away from me, about 3.5 hours by car. I miss her. And because she and I are both dealing with health issues right now, she's become a great source of information and insight for me during my treatment. Recently she sent me a link to an article that I found most interesting.

The Spoon Theory

After reading the article I realized that unlike J, my side effects and fatigue and nausea will someday go away. Her symptoms will not. Someday, I won't be counting spoons. I'm sure J will always have a number in her head from one day to the next. My chemo will end, but her lupus will not. Those facts are very VERY disheartening to me.

J has a strong will about her and a wonderful little family to fight for. And like me, she often times mocks her condition. We do this to keep things light and in a twisted way, positive. She mentioned that she had heard of Lupus patients tattooing spoons on their bodies, little inked reminders of their will to survive. We agreed that we're not ready to go tattooing eating utensils on us, but instead will support eat other daily through text and phone calls.

Still, you never know what the future holds, right?

threekingstattoo.com

Carry on,
~K