Of Half-Marathons and Full Hearts

Here's a story about 4 ladies who make me feel good, or at least better than I otherwise would...

Pictured below are Taylor (l) and Trish (r) from Dr. Z's office. The sign in the middle was made by my daughter and her friend, our next door neighbor.

T&T ran the Publix Georgia Half Marathon last Sunday. They both knew of my running history, so we talked often about races. They couldn't believe I ran as much as I did during chemo. Sometimes I felt just the opposite - look how little I'm running.

The Publix Half is a great race, attracting close to 15,000 runners. I've done it myself a few times. Unlike the Savannah Half I've done the last two years, this one's all about the hills. Since I wasn't in race shape. I decided to come out and cheer on two of my favorite healthcare professionals, along with Danny G and many of my fellow Team Phidippides runners.

Taylor was too fast to see me as she rounded the corner from Highland Ave to Virginia, and Trish was only able to slow briefly lest she get trampled by the pack. So they missed the sign I'm holding above.

I wanted to stand out amongst the crowd, and lacking sufficient hair to bother dyeing brightly, a sign seemed like a good idea. Citing a need for good penmanship, I'd asked my daughter to help, and she in turn grabbed our next door neighbor. The two of them came up with this excellent poster, complete with St Patrick's day puns (I Rish you a good, fun race), pot o' gold, etc.

Needless to say the grown up gals were touched and impressed by the younger gals work.

And I'm just the guy who shleps neon-hued poster board from Va-Hi to Johns Creek, making everyone happy in the process.

Including me.

Enter Scanman

No, I'm not posting any Metallica videos to go with that title. If you got that reference, you already have all the James, Lars & Co you need.

Today was the bone scan to make sure that pain in my hip and leg wasn't cancer. The good news is, it's not cancer. The bad news is, that's two scans in 10 days that turned out to be unnecessary. Or maybe that's good news. Whatever.

The pain is actually a little better today. The root cause could still be some damage to the ball and socket caused by my radiation treatments. We're going to keep an eye on it, and if it doesn't heal on its own, perhaps do another scan (yay!) with an MRI.

My other abnormalities this week include a 3 day headache, hoarse voice, and a rather pretty rash under one arm. All are likely compliments of Stivarga, so I'm going to take a couple days off, and then start back at a lower dose.

Bottom line - cancer hasn't returned to my bones, and as they say, Nothing Else Matters.

Don't call it a Comeback!

LL admonished his fans not to call his return a "comeback" in this classic.

I get it. Comebacks can be good, or they can be bad. An injured athlete returning to the field a after weeks of rehab is a good comeback.

A head of hair regrowing after a round of chemotherapy ends? Also good.

But pain in the hip/pelvis, the area that started this now two plus year long ordeal, that's a comeback I could do without. Unfortunately, we don't get to decide these things. We just have to deal with them.

I just have to deal with this.

It could be any number of things causing pain on my left hip that is now radiating down my leg. Scar tissue, a new injury, joint inflammation from increased workouts. So I went to see Dr. Z, and have a bone scan scheduled for later this week. He's on the fence about this - leaning toward injury vs. reemergence of cancer in the area we so thoroughly irradiated two years ago. So I'm replenishing my supply of legal narcotics and hoping the scan tells us what's going on.

Until then, I will continue to enjoy my 90's rap collection on Spotify.

"How Fast Can You Get to the Hospital?"

Those are words you never want to hear. But for many of us Members of the Club, they are words we eventually do hear. My first time was last Tuesday.

The catalyst was my description of the burning sensation I had felt in my throat and lungs since the night before. Dr. Z knew I'd been on a long flight a few days earlier and he was concerned that I could have developed a blood clot, despite having been off any chemo drugs for quite some time. So off I went to Emory, to receive a cardiac CT scan.

As it turns out, I am clot-free in all the right places.

We think this is an upper respiratory infection, which I might owe to my seatmate on the Prague - Brussels leg of my trip home last Friday. I've been on steroids and antibiotics for a few days now. The sensation is still there, which has kept me from exercising much this week. I'd give myself about a B so far, for not turning into a total ass as I might have in the past after a week of little physical activity.

I start my new drug next week. I've written before about the co-pay assistance programs that drug manufacturers have to help put really expensive drugs into the hands of people who might not otherwise be able to afford them. My drug, Stivarga, retails for over $10,000 a month. That's $350 a pill, once a day. My insurance company picks up 75% of that tab, so Marcie and I were trying to figure out where the "extra" $2500 or so a month was going to come from.

But along came the Reach Program from Bayer. To my pleasant surprise, I qualified for a grant. My cost will be, are you sitting down, $50. Not $50 a pill, $50 a month. It's a brilliant thing for Bayer, since they still get the $8k or so from Humana. Otherwise, I might've gone with some other therapy that's less expensive. Like the old saying goes, 8 grand in hand is worth 10k in the bush.

Da Plan, Da Plan!

With props to Herve, I donned my metaphorical white tux (as opposed to the actual white tux I wore to the prom in 1984) and enthusiastically welcomed the arrival of a plan tonight.

Da Plan is to start on the new drug, Stivarga, in a couple of weeks. It's an oral therapy that works differently than the other forms of chemo I've taken so far, and that's a good thing. You want to keep hitting the cancer from different angles, never giving it a chance to say, "oh we've seen this before." The routine is three weeks on, one week off. Side effects are similar to my original chemo drug, Oxaliplatin; namely, hand/foot syndrome and everyone's favorite spelling bee word, diarrhea.

This is also the most expensive drug I've ever taken. Chemotherapy delivered via IV or port is generally not billed as a drug under your prescription plan. But oral chemotherapy is billed that way, just like your birth control and your viagra (quite an interesting combination, if you ask me.) Whereas the insurance companies created Tier 3 for designer drugs like Viagra, they needed a whole new level of expensive for oral chemo, so they created Tier 4. Stivarga is Tier 4. It retails for $11,000 a month (American money - I asked). Under my plan, I would be responsible for 25% of that. So my out of pocket cost would be a very reasonable $33,000 a year. Fortunately, my plan caps the maximum Tier 4 out of pocket cost at $2500 a year, so when your insurance rates go up by double digits next year, you can send those thank you cards to me.

The drug trial the Wizard mentioned is another good option, but not a convenient one, since there are no trials of that drug or similar agents currently in Atlanta or within a few hours of here. If I lived in NYC, it would be worth doing. If the drug progresses down the path towards release, there will be larger trials in the future in which I could participate, if I even need a new Plan.

For now, Da Plan we have is Da Plan we're going with. I hope this does the trick, without knocking me on my butt for 3 out of every 4 weeks. Because as many a B-list actor learned in his/her guest appearance on Fantasy Island, I'm trying to be careful what I wish for.

Escape from New York

When I planed my trip to see The Wizard, I failed to anticipate The Blizzard. NYC is about to get hammered, and depending on how long I sit in this airport bar, I may be too!

I escaped from New York much like Snake Plissken, only with a train. I'm now in Baltimore, hoping to clear stand by on a late afternoon our evening flight home. If not, Marcie's relatives are ready to host me overnight.

The Wizard has at least one option we had not considered, a trial of a therapy that tries to kick start your T-cells. It is known to work on melanoma, so the trial is to see how it works with colon cancer
Dr Z and the Wizard need to talk, and we need to see if theres a similar trial closer to home. She also likes the other ideas Dr Z had, so there are lots of options to consider.

That's all for now kids...

No News Is...

... not necessarily good news.

I was reminded by Caroline of Singapore, a good friend and avid reader of this little slice of literary heaven, that it's been 3 weeks since my last post. If that last part sounded like a confession, fine, I confess.

I'm guilty of not wanting to tell you what I'd been hoping not to hear, but what I did hear. The chemo I'd been on since October, the one that gave me the Mr. Clean look, slowed things down, but didn't show any signs of putting me into remission. The cancer that's in my lungs is still there, still active, and still growing, albeit very slowly. 

So as Huey Lewis would say, I want a new drug!

The good news is there are new drugs, and at least one of them is on Dr Z's radar for me. But before we start a new treatment, I'm going to see the Wizard at Memorial Sloan Kettering in NYC next week. For those who don't know, I saw the Wizard when all this started and a couple of times since then. She eats, sleeps, and breathes colon cancer, which sounds like a horrible way to live, but it does make her the guru, or, as I like to say, the Wizard.

In the mean time, you know me, I'm living. I'm stopping in Paris again on my way to Prague for work after the NYC trip, and then I have to start getting serious about training for my next half marathon (The Pittsburgh Half in May). I continue to be amazed that in over two years, since my back pain was resolved, I've never had any symptoms of the disease - just side effects from the medicine. If they didn't keep scanning me, we still wouldn't know that it had spread to my lungs. It's weird. 

If we do nothing, eventually these lung spots would compromise my breathing. But we're still a long way from that, and I'm looking forward to figuring out what the next step is going to be. 

Wish me luck... Luck with the Paris Metro that is. Last time I got on a train headed the wrong way. Stupid French-only signage!