Casting pearls before slime

We went to an SCA event this past weekend and several people mentioned they were looking for an update on Team Stryker. As Kevin of Thornbury said, "Are you sure you have the premium subscription to Team Stryker? That updates more often." And that's why we love Kevin. But really, I haven't been updating you all on the latest for Team Stryker because there hasn't been a lot to update. We're in a bit of a holding pattern. We went to see Dr. Lee here in Virginia Beach and like him very much. He said that he could give us the chemo treatments for colon cancer if we wanted, but he honestly didn't think it would help. Certainly doesn't make one want to jump at the chance for that!

Dr. Lee did mention that he has a friend from school who might be interested in our case, though. Her name is Teresa Bendell and she works at the Sarah Cannon Research Institute in Nashville, Tennessee. Minnie Pearl's real name was Sarah Cannon and after battling breast cancer, she started a non-profit foundation to explore cancer research. That led to the Sarah Cannon Research Institute in her name.

So I called the Sarah Cannon folks and got ahold of Dr. Bendell's nurse Melanie. Melanie has been super helpful but we have been going through a lot of shenanigans to get all of Rich's medical records transferred to Dr. Bendell so she can review them. Bendell specializes in GI malignancies, particularly the "odd" ones like Rich's. The idea is that we can get Rich into a case study where they would do a genetic panel of both Rich and his tumor cells to try to isolate something in particular to treat them. This is highly preferred to regular chemo which is a bit of "carpet bombing" your system in hopes of getting rid of the stuff you don't want there.

While we've been waiting for more information from Nashville, we went for "chemo training" at Dr. Lee's office. No matter what kind of treatment we decide on, it will most likely involve going to our local oncologist to have it administered and they require you complete chemo training before you can get treatment.

Hoo boy, that was depressing. We went for our two hours of training and as we sat in the car, I told Rich, "I didn't get bummed when we had the initial diagnosis. I didn't get bummed when Dr. Hanna called me 30 minutes into your eight hour surgery. I didn't get bummed when I saw cell phone pictures of your insides. But that right there? That really bummed me out!" I didn't necessarily have a panic attack while we were there, but I had a very strong sensation that everything this nice lady was telling us didn't apply to our situation. He doesn't need Xeloda. He shouldn't take Oxaliplatin. And nobody likes to hear someone tell their husband, "you can be sexually active but be sure to wear a condom for seven days after treatment and you do NOT want to get anyone pregnant." Then again, maybe our next kid could be Spiderman.

If anything, the chemo training solidified my desire to do whatever we can with the folks in Nashville. I still believe that Rich doesn't necessarily have cancerous cells in him but just misplaced mucus from his appendix rupturing. It's hard to target appendix cells to nuke those while not nuking other "normal" cells. We've been trying to get medical records shuffled since January 21 and it's been slow going. But the good news is the folks at Sarah Cannon are very friendly and they know us by name. That's the advantage of working with a small private research institute. And Southwest flies direct to Nashville, so it should at least be an easy trip there whenever it does happen.

In the meantime, Rich has gone back to fighting as of January 13 and back on the ice as of February 8. Those are two very big milestones. I should go get the slime notebook and write those dates in it so we can reference it in the same context. He had surgery on November 12 and nine weeks later was in armor. Another three weeks and he was in the crease playing goal. So while there is still slime inside him and we're dealing with all the frustrations of being one in 12 million (or more), things are still pretty okay.

Closer to chemo, closer to home

After all the waiting and phone tag, we finally had an appointment with an oncologist in our town. I went with Rich for moral support and to take notes. We got a little nervous when the nurse didn't seem to know why we were there, but she took Rich's vitals and said the doctor would be in soon. She also warned us that he was a talker so it might be a long visit. We met with Dr. Michael Lee at Virginia Oncology and are already very impressed. He's upbeat, genuinely interested in all the details of Rich's situation and happy to explain everything. I've already emailed him pictures of Rich's insides, so I think that means we're pretty close now.

Dr. Lee says that he is going to spend the next two weeks doing some more homework on what our options are and talking with some of his colleagues. More so than ever, I got the distinct impression that no matter how talented or experienced the oncologist is we're talking to, no one really knows what to do about Rich because no one has heard of someone with what he has. So there's no standard operating procedure for these things.

I did specifically ask Dr. Lee if this is cancerous cells or if it is cancer in that mucin is somewhere it shouldn't be and growing without an exit strategy. Again, I had to give him credit because he said, "honestly, we don't really know. It could be any number of things that made this happen so we're all sort of guessing." Fair enough.

We thought before that Rich could have this monoclonal antibody treatment with minimal side effects. But it's looking like chemo will be the route. However, there are all kinds of chemo (we're finding out).

Normally, Rich would get Folfox for the chemo combined with Avastin as a different type of monoclonal antibody. The one that Hausner mentioned was a combo of Herbatox and Vectibix that attack specific types of cells. But Avastin is one that blocks proteins to prevent new blood vessel growth so that it starves the cancer.

Folfox would be administered via a port near his clavicle for 48 hours every two weeks. We didn't like that plan. The port gets all jacked up if you try to fight or play hockey or roll around with your three-year-old.

So instead we can try Xeloda which is the oral version of the 5FU in Folfox. That would be a pill Rich takes twice a day for two weeks and then takes a week off. The other half of that combo is Oxaliplatin which is administered via an IV for three hours every three weeks. So no port necessary. The Xeloda side effects are mild nausea, hand and foot soreness and some fatigue. The Oxaliplatin tends to have worse nausea on that first day but can be treated with Zofran or the like up front. It also can have increased cold sensitivity, both outside and inside (e.g. drinking cold liquids can be painful). None of these drugs cause hair loss or significant weight loss.

Dr. Lee ordered a fresh CT scan to see where we are now as well as blood work to get all new tumor markers. It will be our new base line. On the 21st, Rich has "chemo training" with a nurse practitioner to go over all the chemo drug options and what they entail so we can be better prepared. And then hypothetically he would have his first treatment on the 23rd. We have no idea how long we would need to continue the treatment until we see how it affects the CT scan and blood work results. It will also depend on Rich's side effects and how he handles it.

In the meantime, Dr. Lee is still going to do more homework and ask around and see if there's something else we should try first. Lee was clear to say that the chemotherapy would not cure him. It would only slow the growth or at best shrink it some. But we've already talked about the roommate analogy, so if the slime in his belly is not bothering him, we don't need to freak out and make a mess trying to wipe it out.

Rich said he was pleased his pulse was only 75. He was pleased he weighs 225 (up from 205 the day we left the hospital). And he likes Dr. Lee. He is still full of worry and sadness about the whole thing. But I'm optimistic as always.

Chemotherapy

This week, the geriatric cat peed all over the dining room rug, our Christmas tree fell over and smashed my new favorite ornament, and Rich found out he has to have chemotherapy. It's been a rough week. Trust me, I'm as frustrated as you are. With four damn litter boxes in a row, what would possess the cat to sleep on the chair in the dining room and only hop down long enough to pee at the base of the chair and then return to her perch? I'm sure she's been pooping in that room too, but the dogs are covering for her. So half the Flor tiles of our dining room rug are spread all over the back deck and I'm coming home each evening to sniff the dining room and monitor the stupid cat. And she's spry for her age so I can't put up baby gates to keep her in like I could Sarah the elder stateshound. So maybe we'll install storm doors on both of the entrances to our kitchen and close the cat up in there. That will look lovely.

Speaking of lovely, I'm hoping we found all the glitter and glass that exploded like a yuletide grenade all over our living room. We bought a tree that was thin on the back because it was both discounted and fit better in the corner of our room. But that apparently makes it off-center so a literal cat's breath is all it took to send it flying while Ian and Rich were sitting in the room Monday night. The tree has been returned to its station and tied to the bookcase behind it so that hopefully it will survive until Twelfth Night. My brand new octopus ornament can't say the same. He's more of a pointy, dangerous pentapus now.

We finally heard back from Dr. Hausner. He emailed at 4:59pm on Monday saying that we can't do the antibody treatment unless we get back the K-Ras evaluation (the one that no lab will agree to perform) to prove the cells aren't mutated. So his recommendation is either FOLFOX of XENOX as forms of chemotherapy.

When you tell people that you're supposed to get chemotherapy, they tend to gasp. At a minimum they get the Sad Eyes. I should tell people that Rich is going to a farm where he can run and play with other cancer patients to unburden their hearts.

What we've learned, though, is chemotherapy has many shades to it just like cancer does. Rich said that saying you have cancer is like asking someone "do you like pie?" Well, yeah, I think so, but that depends. It could be rhubarb pie which is disgusting (according to Rich) or it could be pumpkin pie which is the King of All Pies and Best Pie Ever (again, according to Rich). So being diagnosed with cancer is like being given a slice of pie. You just have to determine exactly what kind of pie it is and how much of it you should eat.

Chemotherapy is very similar in that I always assumed it involved looking like hell and losing all your hair and bringing a puke bucket with you most places you go. But then there are chemo treatments that are pills instead of IV drugs. And some of them have very mild side effects. So you could look fine and just feel a little "bleh" for a few months. We think that's the kind of chemo treatment plan Rich is in for, but we're still not quite sure.

I'm not interested in googling the chemicals Hausner mentioned. I don't want to hear about how it makes one person horribly constipated and another have confined to the bathroom diarrhea. We'll wait and see what an actual oncologist says. But that probably won't happen until 2013 at this point as Dr. Lee is still waiting for information from Hausner's office. We hope that will happen Friday but aren't holding our breath.

In good news, Rich is back up to 220 pounds so he's shaved off the mountaineer beard and I have my husband back. He's in surprisingly good spirits which is probably what has afforded me the spare energy to be cranky. But I'm rallying for the holidays, I'm hoping to beat my annual Christmas cold I get every year and I wrapped the first presents of the season tonight. And soon, I'll try making some pumpkin pies for Christmas dinner.