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: