Xeloda: Queen of the Jungle

And there she is, generic Xeloda.

During my first appointment, the in-house pharmacist came to give me the run down on my new little friend. Being the big-pill-swallowing-baby that I am, I immediately prioritized things and told him I wanted the smallest version of this pill possible. He did not look amused.

Any rational person would have wanted to slap some sense into my petty, small-pill-swallowing-self, but he did not.

After inaccurately attempting to convince me the bigger pill wasn't that big (with the all-to-unreliable thumb and pointer finger form of measurement), he gave up and went down to the hospital pharmacy to see if they would let him borrow the 2 pill bottles to show me the pills in person. He was merely going above and beyond to keep me from having to take 20 pills a day (vs. 6). It was noted and appreciated.

Large pill = 3 pills x twice a day = 6 pills
Small pill = 10 pills x twice a day = 20 pills

Here is a situation where "objects in the mirror are closer than they appear."

"Pills seen in photos online aren't nearly as large when you see them in person."

It wasn't a hard sell, and the larger pill was ordered. It arrived a few days later from the CVS Speciality Pharamcy, and I'm in business. Turns out the big pills go down easy with a few swigs of chocolate milk.

14 days on. 7 days off.

I'm on a 3 week cycle now, and my Avastin infusions will follow suit. After 3 years of chemo every 2 weeks, I think I can get quite accustom to only being infused every 3 weeks. This is glorious.


Oncologist: Take 2

I felt like I was walking into a magical fairy land at my first appointment with my new oncologist - and not just because it still had that new office smell. For the first time in 50+ rounds of chemo, I was going to walk out without that damn pump.

I can't believe I spent the past year letting a doctor discourage me from going on the pill form of chemo. I can't believe that opinionated, well-read and highly-in-control ME didn't push the issue more. What doctor thinks it's better to send a mother of young children home with her port accessed and a pump, when she could get the same effect from a pill? It will forever taint my opi$nions on what his ultim$ate motivati$on was for kee$ping me on the p$ump.  I'll just add it to the list of questionable things, and close the door on my time with him.

I sat down in my private infusion area for a quick dose of Avastin, and immediately hit it off with my infusion nurse. She played 20 Questions with me, and without going into incriminating detail, confirmed and validated my choice to move on to a new doctor. Let's just say I'm not the first patient in recent months to defect with the same list of complaints. This added to my internal smile, because I knew I was where I was suppose to be. Gone was that unsettled dread.

A long way from my humble beginnings in a 50+ chair open infusion room. Now I sit in my private throne room.
I'm back under the care of what feels like a team. I no longer see a doctor lording over his revolving group minions, but a doctor trusting and relying on a group of nurses and pharmacists to take care of me. Onward and upward, kids.


Smash Boob

Since I've always tried to be as proactive about my health as one can be when they are well informed, it was easily decided between myself and my newly assigned OBGYN that I should go ahead and jump the line a couple of years and get a mammogram.

No concerns or worries. Just taking care of business and getting a nice set of "baseline" images of the ladies while I'm young and not in any dire situation. I've always utilized preventative care (annual skin checks and pap smears) when it came to my own health - or at least preventative care I knew about. Had someone told me that I was at risk for colon cancer because of my family history, I can assure you I would have signed up for a colonoscopy immediately.

But more importantly, I was there. And once you've had parts of your lower body man-handled in ways you don't want to even know about (because you were sleeping so who cares!), a little boob smashing is child's play! Or so I thought. Apparently they can man-handle and position the ladies in ways even I didn't know where possible. Aside from my port being slightly in the way, it was quick, easy, and one less thing on my personal to-do list when it comes to keeping all the other parts of me healthy. And as with my most recent pap smear, it's always nice to get at least one healthy report back from a doctor.


3 Grateful Years Later

Thanksgiving rolled around again for me. It makes for an easily remembered anniversary. Or in my case, a cancerversary.

Last week I met with my future oncologist. After going over the preliminary history of my treatment, he asked what I understood of my situation. I knew he was just assessing how clearly I was grasping my reality.

I told him that I know I have a cancer that is treatable and controllable, but not necessarily curable. I know that ultimately this disease will probably end my life sooner than someone my age should expect. It won't be this year or the next, but I will probably run out of road much sooner than I should. I have never denied this, but have chosen to put it so far off into the future that it doesn't hinder me from living in the present.

3 years ago I wondered if I would see the next Thanksgiving. Now I live with no doubt I will see many more.


A Girl Who Happens to Have Cancer

The chemo drug that I have been on since day one (5-FU) comes in pill form. It's called Xeloda, and it's a doozy - not only in power, but in size. And when I say size, if it's bigger than an Advil and doesn't come in chewable form, it's considered large by my standards.

Before you throw your hands up in outrage and want to throw rotten fruit at me for getting my chemo infused rather than taking a pill, let me explain a few things.

I HATE taking pills. I'm sitting here with a stuffed up nose, and would rather type with one watery eye half closed, than get up and go take a giant DayQuil gel cap. But that's really not an excuse. Of course I would rather take handfuls of DayQuil over an infusion and a pump. There's no pill so large that a nice glass of chocolate milk can't get down without gagging (mostly). But the doctors of my past haven't exactly been pill pushers. I mean, what doctor isn't a pill pusher? They just haven't pushed this pill for various reasons.

Oncologist #1: He didn't want me to take the pill because he couldn't "control" my taking of it. That means he had no way of knowing for sure if I was really taking my daily dose, and preferred I come in for my infusions. Fine. I wanted to do it by the book and as recommended by my doctor in the early days. I understood that with an infusion, he was guaranteed that I was getting the chemo I needed, when I needed it. Not the case with some pill I take at home. At the time I thought I had signed up for 12, and only 12 rounds of full dose chemo. Taking it in pill form was the least of my concerns.

Oncologist #2: He has mentioned the pill, but knows my lame aversion to taking horse pills. He also has hesitations over the side effects. Nothing I don't currently deal with now, but I think that whole bit about my hands and feel rotting off just gets taken up a notch with the pill. And considering I have to tend to them daily with tiny clippers, Neosporin and bandaids, I guess I could understand his reasoning. He also brought up the out-of-pocket expense of a specialty drug, but I think I can easily justify that if it means life without the pump. Overall, it's safe to say he's not a fan for his own reasons, and has avoided the option.

Oncologist #2.5: She was all about the pill. She actually listened when I said I was sick of going about my normal, daily life with a fanny pack. I can walk out after 45 minutes (Avastin must still be infused) and continue on with my day as if nothing ever happened. But that damn pump. It's just an annoying, constant reminder that my life sucks for 2 days every other week. Sure, my hands and feet might rot off, but that's going to be far less noticeable than a tube coming out of my chest and a fanny pack.

Oncologist #3: He's all about the pill, so the pill it will be. Twice a day, every day, for 2 weeks straight. 2 weeks on. 1 week off. And no pump. Cheers.

I have one more round with the infusion pump scheduled after Thanksgiving with my current oncologist, then I'm breaking up and moving on.

I remind myself that most of the American population probably takes more mediation than this on a daily basis, and they can manage. I'm just looking forward to the freedom it will bring, a break from that damn pump, a doctor that doesn't give me grief for taking it, and spending every week walking around like a completely normal person. I almost feel like I can go back to being a girl...who just happens to have cancer.


Stories with Morals

Not that anyone reading this has ever done this, but I'm sure you've all at least heard about it happening to other people.

You know the time that gossipy email was accidentally sent to the very person being gossiped about? Or the time that personal email went out to the entire company? Or the time you butt-dialed someone and they heard you talking smack about them?

My situation isn't that extreme, but it is one that forced a conversation before I wanted to have it.

It seems my second opinion doctor forgot to ask me (or I forgot to mention) that our most recent meeting was clandestine, and to not forward her notes to my current oncologist. We've had this arrangement in the past. I was still dancing around the idea of how one breaks up with their doctor, and would ideally have a plan in place before even broaching the subject with him.

Much like the email being sent to the wrong person, her notes from our visit were sent to my current doctor. Oops.

He became very aware that I was not only cheating, but (potentially) leaving. And I know this because he left me a very awkward voicemail, which I promptly ignored.

But bright and early Monday morning, there I sat in an exam room, knowing that uncomfortable conversations were about to be had, some truths told, and ultimately the groundwork laid for our break-up.

In all fairness to him, I wanted to explain why I was seeking a second opinion, and very much considering a move to a new doctor (which he labeled as his competition and tried to one-up in that awkward voicemail). Everyone is entitled to constructive feedback, even doctors who may not want to hear it.

The catch to giving constructive feedback is giving it to someone who is good at listening, especially when that feedback is all about how they don't listen - that whole being heard without really being heard thing.

So there I sat, trying desperately to interrupt him and tell him that I didn't feel he listened to me, while he continued talking over me. I play the scene out over and over in my head, because it alone was all the confirmation I needed that it was time to move on.


My Pet Wig and the News

As I alluded to in my last blog, I ventured over to the Colon Cancer Coalition to participate in an interview with Channel 12 regarding colon cancer and release of Cologuard to the market.

Release the Kracken!

My wig behaved, mostly. But that Southern twang? Not so sure about that.

It was awesome to enter the epicenter of an organization that puts on 50 races a year to raise funds for colon cancer. 50! All over the country.  Don't have a Get Your Rear in Gear in your town? Then start one!

Thanks to Channel 12 and Delane Cleveland for taking the time out to raise awareness for colon cancer and the newest screening option on the market.


Cologuard is on the Market

I probably don't talk about colon cancer screening and prevention as often as I should on this blog. I'm assuming that's because I'm not the typical case.

So let's look at these random facts that I pulled off the vast World Wide Web from reputable places like the CDC and the American Cancer Society.
  • It is the 3rd most common cancer for men and women.
  • Of cancers that effect both men and women, it is the 2nd leading killer.
  • Roughly 1 in 20 people will develop colon cancer in their lifetime, give or take a person or 2.
  • All you have to do is look at this girl right here to know that family history is a huge risk factor for developing colon cancer in your younger years (younger than 50). 
  • 90% of colon cancer cases are in people 50 or older.
  • That means that at least 10% of people that develop colon cancer are below that recommended age of 50, and potentially clueless that they are at risk. This is why knowing your family history is vital. It's not the only factor, but it is a huge one. Knowing the warning signs is also great, which is why I talk about them so openly here.
  • The Colon Cancer Coalition also has a plethora of facts and figures if you CLICK RIGHT HERE.

I'm sure most people put off getting their recommended colonoscopy for the same reason they put off any preventative health screening. It takes time, effort and nakedness. But I like to remind everyone that a few moments of shame and exposure could prevent you from a lifetime of shame and exposure.

So whatever excuse you're giving me as to why you haven't had a colonoscopy, or you will give me when the time comes, forget about it. Your excuse has always been invalid, but now it's extremely invalid.

As of last week, an at-home, FDA-approved, screening kit is available to you thanks to the Mayo Clinic. That means behind your bathroom door, you can maintain your dignity and still take a huge step toward preventing colon cancer. It's as simple as asking for a sample of ice cream at the ice cream shop, only this isn't a flavor they would have.

Cologuard is a test kit that can be prescribed for you, the person over 50 with an average risk of developing colon cancer. That means if you have a family history, or other risk factors, you most likely need to take the traditional route for this one. Feel free to contact me for some tips, because I can assure you a colon prep can be far more exciting than they make it out to be.

You can use the kit in the privacy of your own home, and send it via UPS back to the lab for testing. I think UPS is going to single handedly answer their own question: "What can brown do for you?" by shipping these kits back. The results are returned to your doctor.

Here is how the Cologuard website describes the magic:

Every day the lining of your colon naturally sheds cells. If you have cancer and precancer in your colon, abnormal cells shed into the colon, along with normal cells. The shedding cells are picked up by stool as it passes through your colon.
Cologuard uses advanced stool DNA technology to find DNA from these abnormal cells and hemoglobin from red blood cells.
Cologuard is not a genetic test because it does not provide information on inherited risk. Cologuard looks only for altered DNA associated with colon cancer and precancer.

In conjunction with the release of Cologuard, a local news station wanted to get the real scoop from none other than the Colon Cancer Coalition (the very people that put on the Get Your Rear in Gear 5K all over the country). I was privileged enough to be contacted by them to participate in the interview, as someone living colon cancer and going through (my beloved) chemo.

My pet wig was very nervous, as it had never been on television before.

But more on that later.


The Other Doctor

During the Spring, my let-me-get-a-second-opinion-doctor at the university agreed with my treatment plan for this summer - to do those 6 5 rounds of FOLFIRI and meet again after my concluding scans.

Those scans happened, I requested they be sent on to her, and she got them. I know she got them because she called me personally to ask if it was alright for her radiologist to reread them.

Considering I found the original report mildly ambiguous, with no satisfaction in the explanation coming from my current doctor, I gladly welcomed a second, and possibly more detailed understanding of what was really going on in my lungs. I also knew it would be coming from a doctor that wouldn't skip along the surface.

I knew not to expect bad news. I just wanted more precise news.

I looked forward to revisiting those talks that included less chemo, and more invasive options like RFA (radiofrequency ablation), and the far off chance of surgery. I also looked forward to sitting in front of a doctor who was listening to me, not just hearing me. After a year of being heard without really being heard, this was needed. I didn't realize how much it was needed until I hung up from that above mentioned call.

She called me, and that meant a lot.

As expected, there was nothing shocking about the new read on my last scans. But as hoped, the detail I desired was there. In summary, nothing magically shrunk. This I knew, but I had to wonder how disappointed I should be about it. Once again I had an oncologist sitting in front of me acting like my non-shrinking tumors were wonderful, when in my head I wasn't equating the word "wonderful" with growth. At least she didn't tell me I had "good stable disease." I think I might want to slap the next doctor that uses that line on me.

Clearly I still struggle with the idea of my wine glass being half-full in the eyes of oncology.

My ungrateful little attitude deserved nothing less than the doctor taking off her latex gloves and slapping me across the face a few times. Since February, the 2 largest (despite being very, very small) tumors in my lungs grew 2mm.

Slap, slap, slap go the latex gloves.

She even took out a ruler to remind me of how small 2mm is, and in reality there's probably even room for error given how small of a measurement and how accurate the scan can really be. Most oncologist wouldn't even bat an eyelash at 2mm in 7 months, so clearly I needed to simmer down and be happy.

Simmer down, girl, simmer down. I have chronic cancer, which means with the right management of the disease, I have many years ahead of me.

I didn't walk out with warm fuzzies and rays of hope for my unicorn-encrusted future, but I am once again reminded that I'm stuck in the slow lane of traffic, which is a great place to be if one must be stuck. My cancer is going nowhere fast, and that makes me one lucky girl.

As it stands now, I'll continue on with treatment as usual, and meet with a new oncologist (that she is referring me to on my side of town) within the university system. I know it's time for a change.

As far as non-chemo options go, they are still on the table - just not her table. She will box me up and ship me off to the Mayo Clinic for their opinion on things like RFA, SRBT and surgery. Because of the "innumerable nodules" that are so ambiguous and assumed by everyone else to be cancer, I might have to put forth a good fight and a better argument - but I've got those skills finely turned thanks to Merrick.


Happy 50th

This week marks the 50th time I've sat in that overpriced recliner for an infusion. 50 big ones.

I'm not sure where I'm expected to put 50 rounds of chemo on my resume. And I'm not sure where it fits on my personal scale of gloating; somewhere between boasting and self-pitying disappointment, but there you have it.

And how is a girl like me expected to mark this personal milestone? With a box of Rogaine, of course. Doctor's orders.

Why yes, I do wear white after Labor Day.
It's been 9 weeks since my last FOLFIRI infusion, and I happened to complain to my doctor that my hair wasn't growing back in as quickly as it did last time. I even confessed to spending the last 3 weeks obsessing over it with a flashlight in hopes of finding a 5 o'clock shadow. Perhaps it's harder to tell since I still have some hair, but from the looks of it, there's no regrowth yet.

Regardless, my doctor had hardly finished his subtle self-confession about how well Rogaine works, when I jumped off the table and almost ran out the door to buy a box. I mean, I just heard a doctor's borderline endorsement of a product, did I not? Had it not been for that issue of People magazine waiting for me back to the infusion room, I might have forsaken treatment for my vanity.

And like any normal girl with an infusion pump in her fanny pack and a scalp coated in Rogaine, I had to throw on my favorite beanie and take the kids to Target.


When Life Gives You Scars

While laying on the couch one day, Merrick looked over at my partially exposed stomach and said:

"So that's where I came out of your belly?

"Not exactly buddy. That's where they took the cancer out. You came out a little lower." And I motioned to the location of my faint c-section scar, made more obvious thanks to my colon resection, and a little something I like to call scar, on top of scar, on top of scar.

I've never tried to hide my body from my kids, and Merrick routinely tells me that he sees me naked "all the time." Not exactly. He may not have noticed that "all the time" has quickly become, "only when I have no other choice," after I caught him staring a little bit too long at one of those unnecessarily large Victoria's Secret posters in the mall one day.

I decided that from then on the female form might be taking on something a little more thought provoking, and perhaps he was at the age when the female body he lives with should become more of a mystery. Some of his observations about me where evolving into something a little bit too detailed for someone who will be wearing deodorant in less than 5 years.

And then there was that time when we were all changing from a swim in the family locker room at the gym.

"Is THAT where I came out of your body?"

Caught mid-dress, I looked down and quickly grabbed the nearest towel. I then lowered it just enough, and showed him the pencil thin scar that was made for his birth, and the slightly longer scar on top of it for Lachlan's birth, and then the fat little scar that crashed the little scar party during my colon resection.

And though I have no issues outside of my own extreme vanity with the scars themselves, I realized in that moment that I was looking at 3 life-giving moments that left their permanent mark on my body. For many cancer survivors, the scars left behind are debilitating, painful, embarrassing, or a constant reminder of what cancer took from them - be it their masculinity, their femininity, or a chunk out of their person as a whole.

It is a constant, visual reminder of the evils of a disease whose only intent is to take.

Those 2 pencil thin scars, though hardly noticeable, were where life emerged from my body. I could go deep into the bowels of parenting mush and talk about hearing a baby cry for the first time, or seeing a perfectly formed human emerge from your body and taking a breath of air. But you get it, those scars represent life.

And then I have this 3 inch incision running through my belly button. Though not quite pencil thin and perfect, it represents its own life. From that scar emerged cancer, and with the departure of that 3cm wad of tissue, I was handed back my life. So in a weird way, life emerged from that scar, too. And I find that empowering.

I'm not afraid to wear a bikini and let people stare. If they ask I will tell, but in the end a scar is a small price to pay for life.

Side note and unsolicited endorsement: Given that it's Breast Cancer Awareness Month, no once can avoid the explosion of pink that happens in an effort to raise awareness and money for the case. But there is no awareness more powerful than the scar. It speaks louder than any ribbon, NFL jersey or celebrity. I consider The SCAR Project one of those powerful voices.


Chemo Phone Dump

Port accessed. Waiting for infusion. And that's how it will stay for the next 2 days while I'm hooked up to my pump.

Scored the private room with a bed because there were no chairs available. And getting to spend time with Nene Leakes? The icing on the cake.

Parenting from the bed. How one survives motherhood during an infusion. #parentingfromthecouch

Brand new infusion room. The nicest and most peaceful one I've passed through. 

Brand new deluxe infusion chair. Am I here for a pedicure or an infusion?

The nausea patch (Sancuso) to end all nausea patches, that did nothing to end my nausea or vomiting.

The infusion pump. For 2 days, every 2 weeks, for the last 49 rounds.

Get a port, they said. It will hardly be noticeable, they said.
It's staring right at you, so feel free to stare right back.

Just a girl, some chemo drip-drip-dripping, and a new memoir-of-the-week.


Fuzzy McLovin' II

I'm now 6 weeks out from my last full treatment, and any hopes I had of returning to the normal world and the gym with most of my hair intact have now gone out the window faster than my remaining hairs would if they weren't being held down with a hat at all times.

I've finally come to the conclusion that it's all going to go -- in its own time, but it's going to go. My lame attempt at a comb over became futile weeks ago, and I now walk around in a variety of hats, tricking the world into thinking that the few wisps of hair they see sticking out are merely the stragglers to the big hair party I've got going on up under the big top.

Little do they know I wake up to a little nest of hair on my pillow every morning that would make Big Bird drool.

If all goes according to the photos I took last year, I should have a faint stubble any day now. In a couple more weeks, I might lose my scalpish look and trim up what scraggly hairs I have left. But in the mean time, I lean over the trash can every morning and run my fingers obsessively through -- trying to limit the amount of hair that ends up in every other aspect of my life. My hair looks like a mangy dog, but the rest of me is back to normal. Gym rat status has been resumed, feet have healed, nausea pills are collecting dust in the cupboard and I'm back to pretending I'm just a regular girl.

It isn't the losing of hair that's so hard, it's the process of growing it back out that bothers me. This long-haired girl just longs to have a pony tail again.
Photos by Merrick, who says I look so beautiful in my wig, but not so much without it.
Holding back and (mostly) hiding what's left of my hair. Hairband locally made by UrbanHalo.


Expecting Joy

"It is amazing to live with someone who genuinely couldn't care less about Getting Ahead, someone who is absolutely committed to finding joy in the present moment."

As I read that sentence in my memoir-of-the-week, I had to stop and read it again. And again.

Though this book has no immediate relevance to my own life, that passage spoke the truth as I know it now. By changing just a few words, I knew it could easily turn into the mission statement of my life as I know it now. The one where success and things and image and perception and square footage and labels didn't matter quite as much to my vain self anymore.

When faced with the possibility that life might not be as long as you expect it to be, you have to find your raison d'ĂȘtre, you have to start finding happiness, and you need to start finding joy. It's a shame that it takes a major or tragic life event for so many people to stop "getting ahead" and realize that the empty things they chase will be just that in the end.


PET Me Like a Good Dog

With the premature end to my summer of chemo fun, came the grand finale; the long desired PET scan. Not desired on my part, but on the part of every oncologist, naturopath, surgeon and medical professional I'd encountered since my diagnosis. Because my tumors were initially so small, a PET scan would technically not be able to see them, and my insurance rejected any previous request submitted. But not now! Those babies have put on some weight and at least 1 should glow!

My doctor wanted to "get a good look" and make sure that cancer "wasn't anywhere we didn't know about." Comments like this hardly faze me. Like I've become callused to all that "scanxiety" or something. I knew it wasn't anywhere else. I wasn't preparing for the worst and hoping for the best this time. I just knew it wasn't. But for the sake of exposing me to even more radiation and calming him down, why not!

I had my first venture into into being a temporary glow stick last week, with a PET/CT scan. I'll let you look it up if you really want to know how it works, but I can say it made for an uninterrupted 25 minute catnap and the chance to pee in a lead-encased bathroom for "nuclear patients only."

I just envisioned myself voiding something equivalent of a yellow glow stick. If your child has ever chewed one open and illuminated the inside of their mouth, you can understand the shade of yellow. Also rest assured that if your child does this in the future, they will be perfectly fine. It also gave me 2 medically justified hours where my children were banished from my radioactive presence until I didn't set off the Geiger counter.

My anxiety over scan results isn't as intense as it used to be. I hate to think it's predicable, as I always say to never assume anything when it comes to cancer. But given the nature of my cancer and my continuous treatment, I come very close to assuming that everything but my lungs will be magically free and clear. I was not disappointed. Aside from my lungs, I was sparkly and clean from my neck to my knees.

My lungs are still having a small shindig, but one that's still relatively calm and subdued. Nothing has magically disappeared, just magically gotten a little smaller. It's hard for me to say how much smaller, as the PET scan and the subsequent report written by the radiologist doesn't exactly read in millimeter increments like a CT scan. The PET scan doesn't even pick up some of my smaller tumors because of their size. So I can't tell you the minute details of each tumor, but I can generally say that things are smaller.

My doctor even vaguely described some of my smaller tumors as being cancerous, but potentially being in a discombobulated state of confusion and non-growth. Something he can't say for certain, but it gave me a glimmer of hope that some of them might just pull a Kenny and self-implode in the future. Just some wishful speculation on my part.


Throwing in the Towel

When all you hear is "You're so strong," and "You're so tough," throwing in the towel doesn't feel like an option. Like you're letting down the masses and every cancer fighter that went before you, and would have kept on fighting to the bitter end. I'm no where close to the bitter end, so I feel like I have some leeway. But I should still be fighting with all my might, right?

That's being a bit dramatic, but after spending the worst 4 days in bed, paralyzed by extreme nausea and vomiting, the towel had to be thrown.

Admitting that makes me spend a few minutes feeling like a failure.

I officially quit 1 round short of the 6 full treatments (of FOLFIRI) I decided to do this summer. 6 rounds - 1 round = 5 rounds of full dose chemo. It was all voluntary on my part, so why the hell not.

The big, unsolved mystery over the last 5 rounds was why all the violent sickness. I've done this before - 12 times before! And not once did I even reach for my bedside bowl. Sure, I was a bald, scrawny mess who could barely sit on her own sore ass. Yet here I was, only doing 6 rounds and sicker than I'd ever been. Throwing up more than I ever have.

Drug after drug was prescribed, and drug after drug failed. And I felt like my doctor no one was listening to my monotonous droning on about the level of sickness to which I had achieved. Week after week I'd go in and complain, and be sent home with something new to try. My doctor No one was hearing me say that I had never been this sick on chemo - on THIS chemo.

I was even coxed in for my pump disconnect with another shot of Aloxi, a "powerful" and "long term" anti-nausea drug they give me before my infusion. In an act that can only be described as a figurative middle finger to the non-listeners, I promptly made it to the parking lot before throwing up.

So I decided to quit my 6 rounds of summer. I threw in the towel I had just used to wipe the puke from my mouth, and had to sit there and justify my decision to my doctor. Lame.

Don't think I'm quitting treatment. As I type, I have my pump of 5-FU infusing me with my 47th round of chemo and feel just fine. Back to the drag of chemo-lite.


The Patch

In my recent quest to find a new nausea med that actually works, I've been prescribed this tiny little circle.

It wasn't exactly the patch I had in mind when I was trying to describe to my doctor the patch that a fellow patient in the infusion room swore by last summer; one that I knew was costing him over $200 each out-of-pocket. Well worth it for him, as he had exhausted all the anti-nausea meds they had thrown at him - the very situation I find myself in now.

As I tried to describe the box that this patch came in, I made a shape equivalent in size to a paperback book with my thumbs and index fingers. He somehow mistook that to mean a very small little circle that goes behind your ear, and I decided that he would never be my partner if we played charades.

At the time I was almost 3 sheets to the wind on those anxiety drugs, so I rolled my glazed over eyes when he wasn't looking and mentally added another mark on my tally of times when medical professionals have failed to listen to me (even when I've using interpretive dance and hand signals that could land a Boeing 777).

If you are visualizing a paperback book when the pharmacist hands you a something that can fit behind your ear, you can be assured that your doctor got it wrong. Again.

I paid $20 for this little thing that my insurance doesn't cover, and come Monday I will hope it is the best $20 I've ever spent. With the nausea now dragging on beyond a week, a girl can dream!


To Forward or Not to Forward

I thought I could start this blog from 2 different approaches:

A.) For the newly diagnosed, here are some things to expect from those around you, and here's how to take it all with a grain of salt. As in so many of life's circumstances, we must just be gracious and smile and nod.

B.) For those that know someone newly diagnosed, take your finger off the forward button and don't send that email. Here are a few things you may want to do, but please don't. Or at least do them in extreme moderation.

1. Don't second guess, question or challenge their decision to go through chemo.

We know that chemo is extremely toxic, and for good reason. We know that it kills and destroys so much more than just cancer, and takes the body to hell and back for a chance to live. The body knows it is toxic, and actually wants to get rid of it. That's why chemo and nausea/vomiting go hand-in-hand like high school sweethearts. Your body wants to do what it naturally does when it wants to get rid of something causing harm.

We know it will make us sicker than we've ever been, and potentially do damage that can't be undone. We know it is a hard decision to make, but one that isn't taken lightly and one that no one eagerly looks forward to making. Support their individual decision to do what they have chosen to do for their body and their disease.

There are a variety of doctors, a variety of diets and a plethora of alternative treatments that are a sure fire cure if you ask the right person. But cancer is not a cookie cutter disease with a one size fits all cure. So that article you read in Prevention Magazine about a guy cured of cancer by drinking nothing but pineapple juice for 6 straight months does not apply to everyone.

When you are staring down cancer, you want to go with what works. Can you enhance the journey with alternative options, an altered diet and additional healing? Absolutely. But do not tell someone with their life flashing before their eyes that only eating some glittery fruit from a mythical jungle will cure them.  If someone's own immune system can't concur cancer, magical fruit won't be able to either.

Many a time I wanted to scream: "When you get cancer, you can do whatever the hell magical treatment you want!" But for me, I chose chemo.

Every case of cancer is different, and unless you have an intimate knowledge of the disease or that person's particular case, you just don't know what the best option is. And if that person wants to take an alternative route to treat their disease, perhaps one that you even suggested, then that is their choice.

It is much easier to coach from the sidelines than to actually be in the game.

2. Don't forward, send, mail, suggest and share any and every article you come across regarding cancer.

The newly diagnosed person is already being handed piles of papers and information and giant words only doctors can spell. If you'd like to watch me do bench presses with the file I have from my first 2 months after diagnosis, you would be amazed.

The medical community does a very good job of providing the new patient with reading material. Lots of reading material. Add what Googling can spit out and you have yourself a well-stocked library of redundant information.

Even through we know you have the best of intentions, hold back on pressing the forward button. Just because an article has the word "cancer" in it, doesn't mean it's going to be relative to our situation. God bless all of you who sent me information, as I know your heart was in the very best place. But in all honesty, 90% of it went unread. Partly because I knew it was irrelevant, but mainly because I was so overrun with information on cancer that I just couldn't find the time or the desire to read any more about it. So much of the information put out there for the layman is repetitive, and I just couldn't stomach any more of it.

3. Don't forward, send, mail, suggest or share anything about cancer prevention.

You would be amazed at the information that was sent my way about cancer prevention.

Think about it. 

Is there any point in sending something about cancer prevention to someone who has just been diagnosed with cancer? Chances are, when dealing with a young person (in cancer terms that's under 40ish), every single thing that is forwarded about cancer prevention is completely irrelevant to their lifestyle.

I did everything right. I ate right. I exercised. I wasn't overweight. I didn't smoke. I didn't eat red meat. I always wore sunscreen. I went to the doctor for annual skin checks and the pap smears. I got as much sleep as someone with small children could get. So not only could I not prevent the cancer I already had, I was following all the basic rules of prevention and then some. A friend even pointed out that I led a lifestyle worthy of a health and fitness magazine cover, not Cancer Monthly.

Sure, there are a handful of things we can do to prevent a handful of cancers, but I think we all know that cancer is no more than a game of Russian Roulette.

Because of the position we are in, I find that we are often a point of contact for people newly diagnosed. And it's amazing how often it seems to happen as I inch closer and closer to being a grown up. The world of cancer is so complex, yet you can find complete empathy with people that have been there before you. It's to the outside world I really write this, to maybe say as proactive and helpful as you want to be, perhaps more information in the midst of an information overload isn't what's needed.


Summer of '75 (Degrees)

My hair is starting to look like this.

My feet and hands are starting to look like this.

My scale is starting to look like this.

My nausea pill collection is starting to look like this.

But my summer looks like this!!!


It Really is Worth It

I don't think I will ever forgot how miserable it all is. How they start you out on the strongest dose you can take, and lower it as your body starts to give up the battle. I have no doubt that I've been pushed off the high dive again - feeling though it's against my will, but knowing I need to take the plunge.

And as I knelt there last week with my head buried in the toilet once again, I asked myself if it really is worth it.

Then I woke up on Saturday morning and Kyle told me that someone I never met, but had much in common with, had lost her battle the night before. And I'm given that slap-in-the-face reminder that there is now a little boy whose mother will not be there to wake him up for his first day of kindergarten, or smile at him from the audience as he shyly stands on stage for his first school program, or be that stalwart lighthouse as he grows into a man.

And I remind myself that it really is worth it.

Even when I'm sick in bed, there's always room for this.


The Infusion Room is Not a Playground

9 times out of 10, the infusion nurses can't help but tell me how well behaved my children are. But not this day. No, this special day was that 1 out of the 10 that left me daydreaming about things like sending Merrick off to boarding school.

My nurse-of-the-day usually tells me tales of children that lack the social graces that I have beaten instilled into their pliable little minds, while I sit in the infusion chair, shooting them evil glares while raging fire shoots from my ears and boiling blood is drawn from my port.

I just give her a pleasant smile and nod, while quietly reflecting on the threat of violence firm boundaries I put in place before walking into the oncology office. Clearly she wasn't with me at Target 30 minutes prior, when their behavior was escalating to the level of wild banshees and I was internally screaming "This is why I never take them anywhere together in public!"

Parenting is a challenge. Parenting with cancer just adds a little gasoline to the fire.

This is not a playground!
Inside voices!
People are sleeping!
12 inches apart! Everyone sit on their butt and stay a foot apart!


One Down

The kids fended for themselves as I laid in bed for days; meticulously timing by nausea pills to hours that were multiples of 4.

All I could do was assume the downstairs looked like a frat house on any given Sunday morning.

I could hear the occasional cabinet door slam, thanked PBS for its endless cartoons and waited for Lachlan to bring me yet another breakfast bar to open.

I listened as Merrick described in intimate detail how he poured the milk onto his cereal without spilling too much on the counter - but it was OK because he just licked up the mess.

I sighed and rolled over, wondering why sleep alluded me and damning the steroids I usually avoided, merely because they kept me awake. I made a mental note to have them removed from my regimen, for I noticed little difference in my nausea with or without them.

I made a mental list of my priorities, like buying room darkening shades, going back to work and exfoliating.

Then the light in the room started to started to shift, and the sound of the garage door opening was like the whistle at shift change. I was off the clock and could roll over in bed and enjoy chemo with my door shut.


Lucky Me and the Fourth Opinion

I wouldn't call this a second opinion as much as a different opinion. Or maybe a fourth opinion. Or maybe just affirmation. Or maybe just my desire for a doctor that isn't passive.

Kyle and I had a clandestine appointment with a new oncologist, and were hopeful that she might be a tiny bit more aggressive and throw out some options other than maintaining the status quo until my lung mets were big enough to impact my life.

I was partly looking for confirmation that I'm doing the right thing in deciding to do another 6 rounds of that brutal treatment from last summer, but also interested in hearing the opinion and options from a doctor with a reputation for being aggressive and willing to trying anything. We got her name and a full vote of confidence from another colon cancer survivor - and the guarantee that she would indeed be balls to the wall about treating me.

During our visit, she reminded me of something I've already heard, but drove it home in such a way that left me feeling good about having cancer - or at least good about having my cancer. In all my talk of gratefulness, I'm always reminding the world that I still have plenty to be grateful for despite having cancer, and that's partly because of the type of cancer I have and how it has responded to treatment.

Not everyone responds to treatment, and I'm reminded of this all too often when I read stories and meet people whose loved one made it mere months, where I'm looking at years.

She reminded me that I have a chronic disease, and I will be treated as such. It's like I'm no different than someone who has high blood pressure or diabetes. I have a chronic illness, that with proper medication and management, can be controlled. I have the potential to live a long life (relatively speaking) with the right management of my disease, and the fact that I've responded so well to just the first line of defense is excellent. As has been pointed out to me before, they haven't even brought in the big guns yet.

And that makes me one of the lucky ones.

So maybe I can put my morbid outlook in the back of the closet for now. If anything, I walked away with the hope that there might be breaks, and I might find time to escape that damn pump. And there might be a chance for me to pretend to be normal for longer periods of time. And most importantly, that I can step back and really look at this in the long term.

She affirmed my decision to do 6 rounds of full-dose chemo this summer, and agreed that shrinking down what's there is the best idea.

I now have a little more motivation to get though those 6 rounds, and it's motivation greater than getting to wear my size 2 teenager shorts for a 3rd summer in a row, or thinning out my obnoxiously thick hair, or restocking my collection of wet wipes and baby butt paste next to the toilet.

Once done, and assuming the tumors shrink as they did last summer, we will revisit this doctor and consider some other options. That may mean taking a break, continuing with just Avastin (my non-chemo cancer drug that keeps blood supply to tumors from forming and has no debilitating side effects), considering surgery or doing something called RFA (radiofrequency ablation). She heard me loud and clear when I told her I just needed a mental health day away from the chemo life, and wants to help make that happen.

So maybe I won't have to go crazy after all.

My first round of FOLFIRI + Avastin is next Tuesday. I'm going to spend this week running my fingers through my hair without piles of it falling out, drinking multiple Chick-fil-A peach milkshakes in an attempt to pack on a few pounds, and pretending for one more week that I am completely normal!


Post Kindergarten

I think I've more than clearly expressed how much I take nothing for granted in my post-diagnosis world.

And last week was one of those days.

I sat in Merrick's kindergarten class, trying my best to keep it together as he sang and danced around. And along with every parent in the room, my head toiled with both the angst and joy and expectation of a wide open summer.

But unlike every parent in that room, I had that extra layer of appreciation for that moment and the chaos that precedes a summer vacation that is so close these kids could taste it.

I fought back the tears as I watched him move around, collect accolades, show me his progress and mingle with his friends. I couldn't help but think back on those days when I wondered if I'd even be around to see him off to kindergarten, and here I was, faithfully wearing my infusion pump, witnessing him finish his year and soaking it all in. As tired as I was, I was basking in this moment.

He was so happy I was there, often distracted by my presence - clueless to the very real thought I once had of never being there at all.

In his first week of summer, he finally lost that first top tooth that's been dangling for months. And after noticing that he was riding his bike without the training wheels hitting the ground, we determined he could actually ride a bike after all. It's been a week of milestones that I bask in, watching my little kid turn into a real boy and taking it all in.
Photo bombing complete.
He burned rubber out of the driveway with no help from us.
Dear Orthodontic Fairy, please make them grow in straight.


Using Grown Up Words

Merrick has the opportunity to attend a special camp for kids who have a parent with cancer next week, which has somewhat forced the need to usher him in to using those big kid words about what's really going on around here. He got a good dose of it during our 5K, when mom was clearly called out as a survivor and he heard the words "colon cancer" blared over a bullhorn all morning long.

Now that we've had that talk, I'm looking forward to him hanging out with those big kids that just happen to be walking his same harsh path.

Using code words in conversations about cancer has been our way of life around his overly-perceptive mind (and selectively listening ears). It's in the same realm of me spelling out everything S-A-N-T-A is B-R-I-N-G-I-N-G for C-H-R-I-S-T-M-A-S. We're continually amazed that he will pay attention to a conversation that is completely irrelevant to him from another room, but can't bother to hear us when we are staring directly at him and less than 3 feet away. Most days I feel like I'm already raising a teenager.

The time has come and gone when we referred to "mommy being sick" and having "bad germs in her body" and getting "special medicine," and started talking about all those c-words. Merrick now has a working understanding of cancer, and exactly what is going on inside of my body with the most grown-up of terms.

And as expected, the conversation went something like this:
Me: "You know those germs that are in mommy's lungs? They are called cancer. "
Merrick: "Yeah, I know that already."
Me: "And cancer is a very bad thing because it can make you so sick you die." 
Merrick: "Yeah, but you're really OLD so you're going to die soon anyway."
Me: "I'm not old!"
Merrick: "Yes you are. All you talk about is wrinkles and getting your face fixed at the doctor because it looks so old."
Me: "Leave my sun-damaged face out of this! Off topic!"
Merrick: "OK. Can I have a snack?"
Me: "So you have a good grasp of what's going on then?" 
Merrick: "Yeah. Did you know that Darth Sidious and Palpatine are the same guy? Why haven't you made my snack yet?"
It was only fair to finally bring him into the grown-up loop. It's partly his age, and partly the position he keeps finding himself in as one of my caregivers. Obviously not in the grand and powerful ways of a grown-up, but in the little but important ways of a child.

He has tried to heal me with excessive heart drawings, opened innumerable breakfast bars for Lachlan while I lazed on the couch, and just last week brought my nausea pills and a cup of water to the bathroom while I sat with my head buried in the toilet thanks to a post-treatment migraine.

I think that's when it hit me in the saddest of ways. My 6-year-old just fished around in my purse for a little red bottle of pills and had to see me in one of the worst possible states in the bathroom. No one wants to be seen when they're kneeling before the mighty bowl, awaiting the retching, damning anyone who turns on the lights. Yet he has once again become the one to help mommy in her most dire of needs and once again seen her in a position even my closest friends haven't seen me in since a few select nights in college and possibly in my early 20s and maybe in the parking lot after watching that Van Halen cover band. And it's in those moments that he knows to put someone else's needs before his own - a small feat for any small child.

I'm hopeful for his camp experience. I'm ironically excited that he gets to hang around with kids paddling his same canoe. I know he can't possibly grasp the importance of these peers at the ripe old age of 6, but I think in time he will. I'm sure in his little perceptive heart, he will know he is around his own people and this camp experience will do some good for his little soul.


40 Rounds

The prospect of having to go through 12 whole chemo treatments seemed like a daunting task once upon a time - a very long, long time ago.

I came home from my first treatment and made dinner with my infusion pump slung over my shoulder like I was some lady-mercenary from the Amazon. I naively thought this wouldn't so bad after all. I woke up the next morning paralyzed by nausea and everything went downhill from there.

With every treatment, I'd stare at the calendar and wonder how on God's green earth I was going to survive another 11 10 9 8 7 6 40 more rounds of chemo. 40 freakin' rounds!

At the time, I thought my cancer journey would end after 12 rounds and I could slam the book on this chapter of my life forever and never talk about it again; one of my dirty little secrets that would never be part of cocktail hour conversation in those imaginary circles I socialized with.

And here I sit, pump attached to my waist and talking about my 40th round like it's a milestone.

Some of you might be the glass-half-empty types and are wondering what I have to show for the 40 rounds I've been through. And your answer is obviously nothing. I have absolutely nothing to show for it on paper. I am practically still at square one, with those innumerable pesky little things still in my lungs. Chemo has not done its job because I still have cancer.

Then there's my home team; the glass-half-full types. We look at me and know that those 40 rounds are worth it. Sure, I still have cancer growing excruciatingly slow in my lungs, and I'm in just about the same place I was when I started chemo. But being in the same place means that I'm still alive. And it means that cancer hasn't advanced forward, grown more than a few millimeters or shown up somewhere new.  I'm walking around with a disease that has barely progressed because chemo has done its job.

And that's powerful for me to consider. Especially when I meet families or read the stories of people who weren't so lucky, with a diagnoses similar to my own. There are people who didn't respond to treatment and only had 6 months to live, and mere months to love their kids enough to last a lifetime.

So here's to 40 rounds, and 40 more if that's what it takes. I will not go into that oncology building happily, but I will go willingly.


GYRIG 2014

Team Colon Cancer Chick rocked Get Your Rear in Gear this year. Huge thanks to everyone who participated, either by pounding some pavement on a perfectly beautiful day, or donating to a cause that's so near and dear to my colon heart. 
Just another scooter ride through a giant colon!
And now he can say he's smiled inside the large intestines.
4000+ participants this year!
Merrick's 1st 5K. 
Never taking for granted that I'm here to hold my biggest fan.
Get Your Rear in Gear veteran and loyalest friend, Gina. #BFFs
Carb loading.
Photo booth antics.
My littlest caregivers.