Tuesday, July 7, 2015

Port Issues

So chemo has been going nice and steady, with the exception that EVERY SINGLE TREATMENT, my port acts up and doesn't give a blood return immediately. This means I sit there for 1-2 hours, trying new positions, sitting with "drano" (not really, it's altepase or something like that), waiting for my port to work.

Last scheduled treatment would've been #6, but my onc nurse was on vacation and the replacement wasn't comfortable giving me my treatment. Instead, I'm now scheduled for surgery on Thursday, July 9th to fix my port.

Le sigh.

And that surgery won't be done by my surgeon because he is on vacation; instead, I get one of his colleagues, whom I'm sure is just as amazing, it's just that I was shuffled from my surgeon to one colleague and then to another. That makes me uncomfortable. But hey, what are you gonna do?

MRI tonight to see the progress. CEA numbers are looking good. We went from heavily in the black to gray area to now in the white aka normal ranges. Let's keep kicking cancer's ass and get me a good 30 years!

Sunday, May 17, 2015

I'm really not good at keeping up the updates...

So the last treatment was much better than the first in some ways. Using the anti-nausea med, I was able to keep that queasy/burny feeling to a minimum and this allowed me to actually eat on Thursday. (I ate on Wednesday, too, but last time I barely munched my way through some cucumbers on both days).

Got my pump removed Thursday and was happy to report that the doxicycline seems to be doing the trick. Well, sorta. I still have a lot of red, acne like rashes all over my face, but the scalp pain has diminished and the white heads are minimal. I'm washing with hibiclens and baby shampoo-ing my head. My hair looks limp but clean. And it's thinner already, but not yet falling out.

So some of the chemo causes constipation and some of it causes diarrhea. This is so much fun, I can't even tell you. As my friend would say, "your starfish is very, very angry!" Baby wipes are a staple in this household because we use them to wipe our dog's butt after she goes and to clean her paws. She sleeps on our beds and pillows and wherever the hell she wants, so we make sure she's clean.

Thank god for baby wipes.

On my doctor's recommendation, I'm taking a Super B complex vitamin, Methyl B12, and vitamin D3. I think this helps with my energy levels a ton! And my urine looks radioactive. (You can start singing the Imagine Dragons song, it's okay.)

Round 3 is this Tuesday through Thursday! After that, 9 more to go for the 6 month mark. And 3 more to go before we do a new image. I'm hoping the images are SPECTACULAR. :)

Tuesday, April 28, 2015

Side Effects

So I was warned about possible side effects from the FOLFOX and the Vectibix. The acne like rash? Yeah, it hurts. It is SO goddamned painful, especially on my scalp. It feels like I dipped my nose, lips, and chin in acid and then gave myself sunburn. I have the rash all over my face, chest, and back. And my entire scalp just hurts.

Clindamycin lotion has been prescribed for my face and chest, but what do I do about the scalp? I've read everything from Head & Shoulders to baby shampoo. Nothing has been prescribed for this, so I guess I'll wait til I talk to my chemo nurse.

But I'll take it as a sign that the chemo is working and doing its job. If I'm getting the side effects, then this is working!

This is the off week. I go back to chemo next week Tuesday, May 5th!

Wednesday, April 22, 2015

Scan, scan, and scan again...plus back to work and CHEMO!

I went for my post surgery check up and got those staples out. And then I got to meet my oncologist. I'm really happy with my team of doctors. They all communicate with one another really well and they also communicate with me well.

I now have a primary care physician, a Nurse Practitioner, a surgeon, an endocrinologist (I'm also diabetic), and my oncologist. Plus nutritionists and CDE RN should I need it.

I had to get all three scans. We started with a CT and then two weeks later, followed it up with an MRI and a PET.

CT didn't show squat which is good and bad. Good because it's too small. Bad because we know it's there from the biopsies and from the surgeon and we need a baseline to measure against before starting chemo.

PET was nearly undiagnostic, but did show it a bit.

MRI was the hammer that showed us a vague picture of what we're looking at. Take all three together combined with CEA and blood work and BAM! I can do chemo.


Back to work on 4/16/2015 and right back into the saddle of things. Got my schedule adjusted by my boss to make it easier on me to make chemo appointments, blood work appointments, etc. I'm really lucky to have such an understanding boss, supervisors, and coworkers. It's a great place to work


So, I have to brag a bit. I have this really amazing group of friends who all got together and set me up with a "fight bag." I have oils, queasy drops, hats, pillow, blankets, healing crystals, jewelry, water bottles, you name it, I got it. I was so well prepared the nurse actually asked me if I had had cancer before. I said, nah...I just got an amazing bunch of friends who take care of me! That's me sporting my neck pillow. As comfy as that recliner was, the neck pillow was a must. So far, no need for the Frogg Togg, but possibly soon.

First chemo was 4/21/2015. I was there from 9am to 2:30pm. Normally, it won't be that long, but I had stuff to learn about, papers to fill out, medicines to be measured etc. I got to look out over the little memorial park and watch the traffic and trains plug on by.

This is the semi-private suite you get. It's open to the walkway, but I don't have to sit with any other patients. And look...they even feed you lunch!

Plus, look! Get cancer, and at your first treatment, you get this lovely cookbook free! Thanks to Merck :) The recipes are actually tasty looking and really easy to prepare. Can't wait to make some of them

The drip itself was fine. I was given a benadryl to go with ... I don't remember. But it made me drowsy and I knocked out for an hour or so. But man, did I have to pee often. The suite is calming and comfy. But I was up nearly every 40 minutes to pee. This is how I was rocking chemo for a little bit before I took the sunglasses off. Gotta bring some brightness to a crappy thing, right? Awesome glasses brought to me by my friend, Amy, who is one of the sweetest, most genuine people in the world.

At the end of the visit, I got to  come home with my pump. I'm calling him my 48 hour buddy. A friend has recommended I call him Greg who is my stepping stone to Ned (No Evidence of Disease). I like this. Greg it is!

So far, just really tired. A little queasy/off feeling. Just blaaaaaaaaah. I get the pump off tomorrow and hope I feel normal for a week and a half before going back.

I'm doing okay at work. Or at least I think I did! And now...I'm definitely going to pass out. I'm pushing it as it is and I can feel it. :)

Friday, April 10, 2015

PET results, MRI results, Chemo Plan

April 10th, 2015
Met with Dr Rooney this morning. He's super pissed at MRI people for scheduling me the night before and not getting it read on time for him. So he'll call me via phone later today or on Monday as soon as he "calls them and yells at them and they get him a report."

The PET shows the mets "vaguely" and he would normally call this non-diagnostable. However, since we KNOW it's there because the human eye can see smaller than any scan in existence and the biopsies proved it was there on the microscopic level, and since the PET shows it "vaguely" and my CEA is still elevated, he's comfortable with moving forward with chemo as we do have a barometer to measure against. He wishes in some ways that it was more black and white as a measuring tool, however, he's also very happy that it didn't come back as horrific.

My wound however is still red hot healing. This means he'd rather not use Avastin at all this round. Not that I will definitely need another round of chemo, but why put us up against a brick wall when we don't have to. IF we start the Avastin, I could have my scars open up and then there's no chemo until I'm fully healed which he views as dangerous if the cancer decides to dial up the progression.
SO...FOLFOX is where we will start because, while FOLFIRI is just as effective it also lands people in the hospital due to dehydration from uncontrollable diarrhea and that diarrhea would make it hard to work as well. FOLFOX with cetuximab. My KRAS gene testing said that my biopsies are mutation negative.

Tracy is Dr Rooney's infusion specialist nurse and she will be calling me to schedule my first chemo treatment in the next week or two. Any work scheduling issues I have, she will assist me with. I'm pretty sure my work will be nice to me. I'm not going to ask for many changes. I just want 8-4:30 Mondays, Thursdays, Fridays, so I can get to chemo suite if I need to. Keep my Tuesdays off, and change my Wednesdays from 10-8:30 to 8-6:30 for my 10 hour day or make Friday my 10 hour day so I don't want to kill someone and so I still have time to get to cancer center if I need to.
And of course, I'll still work Saturdays.

As soon as Tracy schedules me, I'll know what my weeks on chemo will be as it will be every two weeks!

I feel really good about this because I'm ready to kick its ass back to NED. I didn't like the idea of waiting and waiting and waiting until it grows. What if it grew past the point of treatment?!

Wednesday, April 8, 2015

Had I known....

Had I known that I was going to need to be unzipped from above my belly button down to my groin, I would've worked harder at losing weight and strengthening all my muscles to achieve that lean athletic body I've always admired on other women.

Had I known that you use that many stomach muscles just to blood breathe, I would've done yoga.

I wish I had known that you use your stomach muscles for every movement you want your body to do. No wonder it's called the core.

Other things I didn't know:

Saturday, March 28, 2015

Recovery Room, Part II

I blinked awake in the recovery room to someone asking me if I was all right. They were really close to my face. I recoiled a bit and quickly regretted the movement and asked for water. All they kept giving me were these weird little swabs, dipped in water, so I was still sucking down water, but minimally.

Wednesday, March 18, 2015

Surgery and the Recovery Room, Part I

So all those pre-op appointments were exhausting. I pingponged from one side of this huge hospital to the other to meet every damn appointment. Physical, anesthesia consult, blood cross and match (for which I got to wear a plastic bracelet for well over a week), more blood, EKGs, more blood. I got a little snippy at one point and said, uh next time please just take a pint and divide it among yourselves. My arms hurt.

Thursday, March 12, 2015

Colonoscopy day! And immediate surgical consult? What?

If you're wary about getting a colonoscopy, let me set your mind at ease. It ain't no thing. Seriously. The worst part is the prep. That 4 liters of salty liquid? Uh, gross. They give you a flavor packet, which helps a bit, but it's pretty nasty.

Word of Advice: drink it COLD and fast. Each 8 oz glass, cold and fast.

Tuesday, March 10, 2015

Well there's a title for you

Even though I'm putting this out into the world wide web, it's not something I'm going to link to via my reading corner blog or my try stuff blog or anything like that. I just needed a place to jot it down as I go. I should've done it before my surgery, but honestly, my mind has been kind of shut down about this whole thing. I've been functioning one step at a time. One bit of news at a time. Day by day.

So I decided I needed a place to just jot it down. Yeah, I know, public forum and all. And it's truly a private matter. And it's connected to my G+ because you just can't seem to disconnect anything in this world. I'm okay with that. It's mainly for me. But everyone I know and love knows, so it's okay if they stumble across this, too.

And with that it begins.


So in November or so I had some stomach cramping and diarrhea. When I wiped, I noticed some blood on my tissue. Didn't think much of it. Having had constipation before and then a tear or whatever after really hard stool, it happens.

But it continued off and on for about a month. Finally, after a third month in a row of a yeast infection, something new and fun I've never experienced before, I made a doctor's appointment. Well, I asked my dad to make one for me due to my work hours and job. When dad told me he got me in the next day and that they said the anal bleeding was probably a hemorrhoid, I remember telling him, "Why did you tell them THAT? I was going in for a yeast infection!"

I went to the doctor who ordered a colonoscopy.  I asked if that was really necessary given my age.

"Well, sure, it could just be a hemorrhoid. But what if it isn't? And then it becomes worse? Better safe than sorry!"

"Yeah, okay."

And so, I was scheduled for a colonscopy in February. It was in January, but we had a huge blizzard and so I had to reschedule. Eh, no big deal, I thought. This is just to be safe anyway.