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!

(Not Even Close To) Live From the Chemo Room 35

So, I'm thirteen days late in posting this. Gimme a break. Haven't you heard of writer's block?

Infusion 35 was the day after Christmas, or as I like to call it Family Jewvie Day. You see, for those who don't know, we Jews have nothing to do on Christmas Day, so we go to the movies. All of us. This year my family saw Life of Pi, which is like Titanic, only in this one the Leo DeCaprio character is an Indian teen and he survives, along with a lion. So maybe it's not really like Titanic, except for the sinking boat part.

My oldest has been asking if he could join me for chemo one time. He's very intrigued by how things work. So I brought him along and he spent the morning in the chair next to me, until Marcie came to deliver lunch and to rescue him from what had probably become boredom by then. He's very observent, not in the religious way, but in the noticing way. Over dinner that night, he had lots of questions about the procedures he had seen. 

He was gone by the time my favorite part of the day occurred. There were four of us who were all getting pumps, or, if you prefer, a chemo-Takhomasak.  One of the techs appeared with four shoebox-sized gifts for us. "You'll never need this," he said, "but Northside (Hospital) is making us give them to all our pump patients." In the box, labelled Chemotherapy Spill Kit, is basically a haz-mat suit, including gloves and booties, and some rags. The irony was just starting to hit me when one of my fellow chemo loungers said, "Let me get this straight. Getting this shit on my skin is apparently very bad, but dumping it straight into my heart is OK."

Brilliant!

The Northside reference may have been an omen. Dr. Z and his partners sold their practice to one of Atlanta's largest hospital entities as of the end of the year. New ways of doing things, including how they bill for chemo sessions, are now in place. I can't wait to see what this means to my wallet. 

More on that tomorrow in Episode 36. Stay tuned!

Happy Cancerversary To Me!

It's been two years since this chapter in my life started. Two years since the pain in my back and legs lead to that WTF? moment. Two years since I laid face down on the table while a needle was inserted in my pelvis with jackhammer-like dexterity. Two years since we waited, and waited, and waited for the results. Two years since we heard the news we didn't want to hear.

In December of 2010, if you had an iPhone you could only use it on AT&T. Your iPad was first generation. The average price of gas was $2.93. Damn, I love Wikipedia!

In the the time that has passed, I've had 34 infusions, 10 sessions of radiation therapy, 10 more stereotactic radiation sessions, and umpteen other visits to Dr Z and a handful of other docs.

I've also lived my life.

I've celebrated my kids' birthdays 4 times (3 kids, two are twins, you can do the math).
I've celebrated anniversaries #18 and 19 with Marcie.
I've run 1055.2 miles, including 3 half-marathons, 2 Peachtree Road Races (one with Adam), and a couple of Father's Day runs, 1 with each son.
I've raised the Torah at my son's Bar Mitzvah.
I've been to Peru, Brazil, Costa Rica, Austria, and the Czech Republic, and I spent a day in Paris.
I've been to Disney World.
I've taken each of the kids to at least one UGA Football Game, and I travelled on the team plane to see the Falcons play in Chicago.
I've written a book, but you knew that already.

I've learned to appreciate the time I have with my family. I love when we're all together, even if we're spread out across the living room and kitchen, with the TV on, a couple of laptops open.

I've gotten better about not sweating the small stuff.

While I'm still a long way from being the person I want to be, I'm closer than I was two years ago, cancer notwithstanding.

Happy New Year to you, and Happy Cancerversary to me!

Live From the Chemo Room 34

Greetings from Dr. Z's fabulous new office in Johns Creek. The practice moved from inside the hospital to a building across the street. The space is much bigger, with more windows, more chemo chairs, and most importantly, a coffee/hot chocolate machine in the chemo lounge. This is apparently meant to help keep the spouses, friends, and caregivers awake during the endless loop of court shows and soap operas that will soon be showing on the >60 inch TV.

There's a room where they mix the chemo drugs, which was hidden from view in the old office. Here, it's directly behind the nurses' desk, visible through two glass-doored cubes that, for lack of a better description, look like airlocks on a spaceship. I don't know how toxic that stuff on the other side of the wall is, but if it requires airlocks, I'm not sure I want it to be infused into my bloodstream.

I like the new digs, but I'd be lying if I told you I'm enjoying them. I'd really prefer not to be here, especially this week, when I have plenty going on at work. But I did get a good reminder from Bill, the bloodsucker (a.k.a. the nurse who did my labs today) of why I'm here. He's 13 years removed from treatment for leukemia and cancer-free.

Thank You Sir, Can I Have Another?

... 3 rounds of chemo, that is.

Yes, sans paddle and gothic robe, Dr. Z told me last weekend that he's happy with the scan results, which showed no growth in the lung spots, but that he wants to do 3 more rounds to make sure we've got this latest episode under control.

Was I happy? Yes, for about ten seconds, after he said he liked the scan results, but before the part about more chemo. But, like Kevin Bacon in the clip I've included for your viewing pleasure, what could I do? I'm committed to the fight, so let's get it done.

Speaking of committed, or people who should be, I hear Hugo Chavez goes to Cuba for his cancer treatments. How messed up must Venezuelan medicine be if the leader of that country has to travel to an island where the cars are all from the 1950's to seek advanced cures? Maybe he's just there for the nightlife. I hear the Copacabana is hopping!

Round 5 starts tomorrow, so wi-fi willing and the creek don't rise, I'll have another post then.