11.26.2015

Thanksgiving Eve Again

On Thanksgiving Eve 4 years ago, I woke up to a doctor telling me I had a malignant mass in my colon. I had no idea what malignant really meant, or that young people could even get colon cancer. I didn't even know if I would live long enough to see Merrick go off to kindergarten. Now here I am with a 2nd grader, defying the statistics, and living with my "good, stable disease." Happy Cancerversary to me!

I know many who will sit down today with one less person at their table this year because of this disease. I know many who are wondering if this might be their last Thanksgiving, as cancer runs rampant through their bodies. 

I don't want anyone to miss a holiday, a milestone, or a day because they didn't get screened or know the symptoms of this disease. On Giving Tuesday, help support the Colon Cancer Coalition in their efforts to raise awareness, promote screening, and educate people about a disease that is being diagnosed in young people with shocking frequency.

The Journal of the American Medical Association predicts that by 2030, the rate of colon cancer in young people ages 20 to 34 will increase by 90%, and rectal cancer will increase by 124%. Because young people do not fall within the recommended screening age, they are going undiagnosed. To be proactive, the Colon Cancer Coalition is doing what it can to educate and increase awareness of the signs and symptoms of this disease, and raise the profile of young people being diagnosed. 




11.18.2015

The OC

I've been to a few of the Get Your Rear in Gear races this year, but (outside of the Twin Cities) none hits closer to home than the Orange County race. Granted, I'm a LA chick, but I'll take some OC if I can get it - especially when I'm just a drive away from some of my favorite people.

College roomies!
It was a nice little preview, as I return on Friday for Thanksgiving. It made saying good-bye a little easier, knowing I was going to see everyone I love by the end of the week.

I love going to races, because I love the emotional energy and connection I make with so many other people that have been impacted by colorectal cancer. From meeting other survivors, to seeing families so impassioned about what they do to honor the memory of someone they lost to this disease - it just fills me up.

And I don't go to these races as a survivor. Obviously I am, but this isn't my race and this isn't my time. I'm simply there  as an employee of the Colon Cancer Coalition doing my job. And if someone happens to figure out what I am, then my cover is blown. But rarely do I play the "survivor" card when I'm in work mode.

The man who stole my college
roommate and married her.
I did have the chance to connect with a survivor at this race, and as she told me her story and started to ask questions, I couldn't help but blow my cover. One-on-one is far different from me getting on stage and ripping open my dress shirt to reveal the big S on my t-shirt. This girl was young, a few months in, and still trying to navigate her way through her diagnosis and treatment. To be able to connect with her on that level, and provide a connection to us as an organization feels right to me. To say to her that I've been through this, that I'm still going through this, and when you think you can't do it any more, I'm here to say you can. It makes me cry just thinking about it. I love so much about what I do, but to be able to instantly connect with someone like that just makes it that much sweeter. I could not imagine what if would have meant for me to meet another young survivor just a few months into my treatment.

Without much effort, I also lured a few of my longest and closest friends to come down. Though not the best place to hang out due to my limited time and availability, it was still so great to know that they wanted to come down and do their part to support me, and to support my cause. I look forward to seeing even more of my friends and family when we have our inaugural race in Los Angeles on May 15th.

You heard it here first, folks! Get Your Rear in Gear - Los Angeles is happening, and I couldn't be more excited. I plan to form a team, should you happen to live in LA (or any of the surrounding counties) and want to join.

And representing San Bernardino County...
So glad to have these girls by my side 20 year later.
And representing the 310...

11.06.2015

Friday with #5

I'm what I would call freelancing right now with oncologists.

I have my favorite, but she's about an hour away. I see one in the same hospital system closer to home, and he has (I think) warmed up to me. Just when we're settling in and he's realized that my cancer is indeed very stable and slow growing, he changes days at my clinic. And it's not that I can't change clinics with him, I just don't want to.

A view from the chair.
I'm currently at a new facility with private rooms and sweet nurses. If I followed him to the other clinic on my treatment day, it would mean an open infusion room, horrible decor, and bad color schemes. I've only been there on 2 occasions, and the color scheme alone makes me never want to go back. I'm sure this can be directly blamed for the general moral of the troops at that location. Or so I hear.

I can't stress enough how important and valuable your surroundings are when being infused. Remember I started this journey in a giant bullpen with at least 50 recliners and IV poles sounding alarms every other minute. Now I'm in a semi-private room, with giant windows, lights I can dim, a curtain I can pull, and nurses who work serenely at their station. There is no doubt where my infusion-induced anxiety started. So needless to say, the colors and the chaos of an infusion room matter greatly in my treatment plan.

I'm doing my best to stay at my preferred clinic, and that means seeing another oncologist on a different day. Because my case is so straight forward, I'm fine with this. I was a little more encouraged when my home care nurse came to disconnect me 2 weeks ago and told me that she had not only known this oncologist since his days as a resident, but that he was "absolutely brilliant!" She's been an oncology nurse for 30+ years, so I'm going to take that as a stellar endorsement.

So welcome oncologist #5.

#5 and I met before my infusion today to go over scan results, and I broached all the subjects.

Is it time to consider the next drug? He says no. He understands that growth is expected in my case when I'm only on 5-FU. I've got years of maintenance chemo to prove this. And despite my tumors having complete stability with my last scan (no shrinkage, no growth) while on Irinotecan, he said they will wait until there is "substantial change" before they will consider switching me to Erbitux. I tried to make the crack about my "no hair and great skin, or hair and bad skin," but I think it was lost in translation. #chemogirlproblems

So it's another 3 months of Irinotecan, which should be doable minus a few trips already on the books. Then we shall reassess after my next PET.




11.04.2015

PETs, Rashes, and Bad Word Choices

25 minutes nap in the middle of the work day?
Don't mind if I do!
For some reason, I just signed up for that whole online medical records thing on Monday.

They have always tried to sucker me in, but I don't think I've ever cared enough to envision myself voluntarily going to that website when I could be on People.com learning about more important things. But what the hell! The login was staring me in the face, so I did.

And what do you know, all my tests and reports were right in front of me - including my PET scans for the last year. Ironic considering I had a PET scan on Monday.

Low and behold I got an email yesterday saying that my medical records had been updated. For once, I won't have to wait until I see my doctor to get the results. Amazing how that works.

As usual, I pretended to be complacent about the scan, and expected minimal growth (the usual 2mm considering I've taken a break from Irinotecan for the last few months) and clean reports for every other part of my body. And as usual, that's what's going on. Under normal circumstances, this wouldn't have phased me. My disease remains small, does not impact my breathing, cannot be felt, and is controlled when I'm on the nasty drugs.

But what did catch me off guard was the note from the radiologist: "Overall the pulmonary metastatic disease appears to be worsening." Worsening. Hum.

I took offense. Sure, my tumors grew, but worsening was probably not the best word to describe my condition. It connotates such doom and gloom.

I go back in for round 67 on Friday, where I'll assumably be back on Irinotecan. Then traveling will keep me from getting treatment for the rest of the month. I'm sure my oncologist is getting annoyed by my exotic travel schedule, but he's going to have to work around it for one more month. Then I'm all his until further notice.

I'll be having some come-to-Jesus conversations with him about the results of the last few scans, and see if he thinks I may have run my 3 year course with Irinotecan. If he agrees, this would mean on to the next drug. I'll get to finally grow some hair, but the main side effect of this drug would be an acne-like rash.

So no hair and great skin, or hair and bad skin. Considering the latter pretty much sums up my 20s, I think my vanity knows how to handle it.