To Facebook or not to Facebook

I've never made an official Facebook post about my cancer diagnosis. I've updated friends and family via e-mail and there's been a couple pictures on Facebook that could have been a signal if somebody was really paying attention. But I am feeling the need to kind of get it out there. I've been drafting what I would say, focusing on the 5k run in a couple months, but I don't know. Hmmmm...

Please take a moment to consider joining my team for the Colon Cancer Alliance's Undy run on March 28th in Forest Park. (Invite your family and friends!) And if you can't join us in person, please consider making a donation to my team, Kickin It. The CCA works to raise awareness and to save lives because colon cancer is treatable when caught early. It might not be a fun topic for us all to talk about, but talking about it is important!

Since my stage IV colon cancer diagnosis in June of last year at 38 with no known risk factors and no symptoms, I've been working hard. But 2 surgeries + 10 rounds of chemo = just the beginning of this fight for me. In a couple of weeks, I'll be starting 6 more months of chemo and I'll need all of your support and prayers.

It's easy to take your health for granted when you're out running and playing soccer, but when that is taken from you, you'll do your best to never take anything for granted again. To quote Stuart Scott, "you beat cancer by how you live, why you live and in the manner in which you live." So let's all go run (and walk) in our undies!

3 Little Birds 4 Life

• Appointment with the Siteman Counseling Service

Today I met with Dr. K, a psychologist with the Siteman Counseling Service. As most first appointments go, it was filled with lots of questions/answers and get-to-know-you kind of stuff.

She provided me with some information about a few programs that I might find helpful. My favorite is one called 3 Little Birds 4 Life. It's a charity that grants wishes for young adults (18-40) with cancer. I checked out their website and it is interesting. Their headquarters happen to be in St. Louis and they have a few other offices in the US. Unfortunately, their wish application process is closed right now as they work on fulfilling the wishes that they currently have in their queue.

The next six months

• Appointment with Dr. T at Siteman South County

I don't think I really knew how to feel before today's appointment with Dr. T. But now that's is over, I'm feeling good. The plan going forward is to go after any cancer bits hiding out and laying low, starting with a minimum of six more months of chemo. We'll start in three weeks on February 17th, with 4 more rounds of FOLFOX. I've had 8 rounds already and studies show that most people can only tolerate 12 rounds. Then I'll have some scans and just depending on how things are going, we'll do some variety of 5-FU and/or Avastin and/or Oxaliplatin and/or Xeloda for 4 more months. And then the dream of all dreams is for there to be no evidence of disease (NED) in six months when I'm scanned, around August 4th. That's the date that I'm going to dangle out in front of myself.

We're also adding a couple of things to my stack of meds. First is a Vitamin D supplement, 50,000 mgs. taken just once a week for the next 12 weeks. I'm wondering if that is going to be the largest pill I've ever seen or maybe it will be a pile of 500 pills? We shall see. Secondly, to help with the neuropathy, I'm going to start a Vitamin B supplement and a daily medication called Neurontin.

One step at a time

Getting out of bed and moving around is an important part of recovery. Even if it is a tiny walk down the block and back. Baby it's cold outside.

And it shall be done!

• Hospital discharge day, take two

This morning when the minions came by, I asked about my 15 wonderful staples and when they might be removed. Minion #1 asked how many days it had been since my surgery and it sent the other three minions flipping through the stacks of papers in their hands. "Day nine!" Minion #1 announced that day nine was too early for them to come out but that they would schedule an appointment for me with Dr. MM's PA to get them out next week. This also sent the other three minions into a writing frenzy.

Advance a few hours and in comes Dr. MM and minion #1. After a brief conversation about the overnight activity, Dr. MM touches on the pathology results, but defers to Dr. T, who I will be seeing again next week, to get the full run-down on what the report means for future treatment options. Dr. MM does say though that there was nothing unexpected. It feels like a good-bye, good luck, have a nice life speech. Before he leaves though, Dr. MM asks me if the staples came out okay. "Not out yet," I said, trying not to smile and barely noticing minion #1's slight shuffling. To which Dr. MM gives minion #1 a look and makes a motion with his arm. And it shall be done! lol 

And 30 minutes later, it is done!

Friends in good places

• ER, readmitted to Big Barnes

This morning I couldn't keep anything down and vomiting is at the top of the list for post-op reasons to call the doctor. So I called the exchange and basically "nothing coming out, nothing staying down" means a trip to the ER. Thankfully, Brenda made a call to a friend of hers working in the ER today, and within 15 or so minutes of arrival, we are back in a room and getting started. While I did end up spending about 6 hours in the ER, I'm convinced my waiting room time would likely have been closer to 3 hours if Brenda hadn't contacted her friend.

They start fluids, take an x-ray, run a CT, and basically keep an eye on me. After the ER doctors confer with Dr. MM, they decide to admit me to the hospital. The GI floor where I stayed last week is full (no penthouse for me this week) but I get a room one floor down and on the other side of the building (so this time my view includes the helicopter landing pads). The nurse tells me that the patients on this floor are mostly in for liver, pancreas, and gall bladder issues. Close enough to GI, right? And no roommate, so Hector can stay with me overnight. 

Nurse Hector

One of my discharge medications is a daily injection (into my abdomen) to prevent blood clots. I have to get one shot a day for 3 full weeks. Nurse Hector was given a 5 minute course at the hospital. Each shot leaves a little bruise, I've been getting them since my surgery day, and my belly is a big mess of healing incisions, staples, and bruises. The bikini portion of this beauty pageant will have to wait.

Hot Chocolate with marshmallows

• Hospital discharge day

The day started with Dr. MM and his minions stopping by to talk to me about possibly going home today. I have to admit, the idea scared me, I didn't feel ready. But they told me that they'd check in with me after lunch and we'd discuss it more at that point. However... a few minutes later when my nurse comes in, she tells me that my discharge order is already in the system. Ummm. She tells me that we don't have to do anything about it right away and we can wait and see how I feel after eating lunch. This is the second day in a row that I've had nurse Bridgit and I have to say that she is great.

As I think more and more about being at home, and being in my own bed, the idea of going home is sounding better and better. Eventually I convince myself that I'm ready and we start the discharge process, but not before I get a special delivery of some more well wishes. And yes, I may have asked for my own well wishes but I don't regret it. Hearing from my friends and having their support is really great.

Penthouse

It's been nice not having a roommate for the last 12 or so hours. I know it likely won't last much longer but I'm enjoying the view while I can.

There's no crying in recovery!

Oh wait. There definitely would be crying, but even the slightest hiccup or the tiniest movement is a cause for pain. I can't imagine how crying might feel. I'll stick to taking deep breathes and reminding myself that this will pass. (And that's not even a BM joke but it could be!)

"Doctors can be a little crazy."

• Surgery day, colon resection at Big Barnes with Dr. MM

And thankfully, doctors can be lots of other things too. Like skillful, knowledgeable, and compassionate... but thank you nurse, for this lovely tidbit of information.

Well, storm Hektor was nice to St. Louis and it really didn't snow/ice last night. Staying at the hotel next to the hospital did allow for an extra hour of sleep this morning though. We got over to the hospital and checked in, and as the first case of the day for Dr. MM I was fast-tracked right up to the surgery floor and the prep area. Bonus.

There were questions to answer, some paperwork to sign, blood work to be drawn, a Dr. MM fly-by (still wearing his winter coat), an epidural put in, and just a little bit of waiting. I remember them explaining that I would be put in an almost vertical position for the surgery. All I could think about was that I hoped I would be well out of it by the time I was inverted. (And I was.)

The next thing I remember is being in a recovery room and soon after that, Hector and Laura came in to say hello. Dr. MM told them that things went well and as expected. Eventually I am moved to a room, not a private room though, and I have a roommate this first night (so Hector can't stay with me.) From what I overheard, rooms with two female patients can not have a male caregiver stay in the room overnight. He could sleep outside on a couch in the family room, but we decide that it would be better if he went home and got some sleep. Plus I am planning on trying to get some sleep too, in between these beeps and nurse visits.

Winter Storm Hektor

We decided to get a hotel room just in case Hektor causes trouble tonight.

Ready, set, and go

Today is Sunday fun day, surgery prep day. And this is how Stripes and I are both feeling about that.

The bad news is that the weather is about to get super bad. Some sort of icy, rain mix is going to start in a few hours and last through the night. A night that will be require me to get up early and be at the hospital at 7 a.m. Dear Mother Nature, please cooperate.

The results are in

I came across an e-mail tonight that reminded me that I can sign-up to an on-line portal for access to my tests and records under my new team of doctors. It takes only a second to figure out and then boom, there are my blood test results from today AND my MRI/CT results from yesterday. Right there. A click of a button away. Dinner is ready, but it is going to have to wait. Must. Read. Good news! Great news! No evidence of metastatic disease in the abdomen or chest or neck. And the colon tumor looks "much smaller". Take that cancer! You took my favorite number and turned it against me. I'm not happy with you. But today it appears is a victory for me!

Vampire-like

• Pre-op appointment at Big Barnes

NINE test tubes of blood, one urine sample, five signatures, and two-and-a-half hours later... pre-op is done!

Richard!

After a couple of Gilmore Girls free weeks, my slightly early arrival home this afternoon has led to some TV watching and 3 episodes of GG so far. Just a week ago, the actor who played Richard Gilmore passed away of brain cancer. As I was telling one of my sisters today, it feels like cancer is just everywhere since my diagnosis. I'm not naive enough to think it wasn't everywhere before my diagnosis but man, it's everywhere.

Maroon 5

• CT/MRI tests

In the summer of 2013 I had a couple of MRIs, of my neck and my back, during the process of trying to diagnose some numbness I was having on my left side, in my arm and leg. Originally I self-diagnosed myself with a back problem that was maybe pinching something, partially due to a friend having the same problem and partially due to WebMD. After a bunch of testing and an uneventful meeting with an MS specialist/neurologist, the numbness seemed to go away and that was that. BUT, long story long, the MRI machine was freaky! It is so loud, it sounds like you are laying inside a barrel that is being hit with a hammer or something. I thought I was prepared but I... was... not. During my first one, the music in the head set came on SO LOUD and I was already in the machine and I opened my eyes... and queue my freak out! I squeezed the emergency trigger in my hand and the tech rolled me back out. I'm still not sure how she convinced me to go back in.

And those memories came flooding back to me today as they rolled me into the machine, head phones on (at a quiet level as requested), all wrapped up, and freaking out! The test took about an hour I guess and I spent it imagining myself on a beach, playing soccer, laying in bed watching TV, and in between the loud noises and the announcements to hold my breathe, I spent it singing along (silently) to the music playing in the head phones. I definitely remember some Maroon 5.

Now I wait. The pictures (from the MRI and also from a CT that I had today) were sent to the radiologist for review and then the results will be sent to Dr. T, Dr. MM, and most importantly Dr. C. When I met with him in the beginning of December, he didn't anticipate being able to do anything during my surgery, but today's tests will confirm that, or possibly suggest something to be done. I'm scared to think about what's been going on inside this body of mine during the past month since chemo was stopped, but I'm about to find out.

Neuropathy

The neuropathy in my hands and feet is no joke. It's been six weeks since my last dose of Oxaliplatin and the neuropathy did seem to subside for a bit, but it's baaaaaack. And it's no fun.

Inspiration

I can't imagine being in the public spotlight going through all of this. I've read the above quote from Stuart Scott probably 20 times today. Live. Fight like hell. I'm on it Stuart!