Test results

I've been a nervous wreck for the past few days waiting on the results of Mike's CT scan. And for good reason, apparently. The cancer is "a little bit worse." That 's a quote from Mike's doctor and not one we wanted to hear.

The tumor in his neck that we can see is pretty much the same, even after shrinking somewhat initially. There's one new small spot in his neck. Another lymph node in his neck has actually improved. One spot in the middle of his chest has grown and another has formed.

In addition to the scan, some other tests were run to again try to find the origin of this cancer. I mentioned before that an assay showed it was coming from the lungs. A new look at some cells also pointed to the lung -- small-cell carcinoma. This is apparently the kind of cancer that smokers get. Dr. Neel's words to Mike: you should not have this. He says it's bizarre to see in a non-smoker.

Nonetheless, if there's a silver lining, it's that we're narrowing in on what this cancer is. Right now, he still defines it as carcinoma of unknown primary but added "favoring small-cell lung cancer." Knowing what it is means knowing how to treat it. Up until now, Dr. Neel says we've really just been taking shots in the dark.

So there will be a change in chemo. We're not sure of the specifics right now. We do know that Mike won't have to have Erbitux anymore. That's the one he had to have every week. So he's kind of relieved to get a break. Dr. Neel had just received the test results hours before our appointment so he wasn't 100 percent sure what he wanted to do on the chemo. He's going to study it some more -- apparently Mike's case is somewhat of a medical mystery -- and consult with the other oncologists in the practice. We see him again on Aug. 12 and the new chemo will start that day too.

The drug that's most commonly used to treat this is Cisplatin, which he's been getting. Why hasn't it worked? Perhaps because it's not in the proper combination with other drugs. So Neel is trying to determine which one to use.

Small-cell lung cancer, like carcinoma of unknown primary, isn't curable. It spreads fast, but can die fast with chemo. The goal is to shrink the tumors. What generally happens then, is a patient can go months, maybe a year or so, before it reappears. Then chemo starts again.

So we've got a long road ahead of us.

Three men and a baby

We're having a fun visit with Tom and Rick this weekend. Although, I'm not so sure Tom and Rick's idea of fun is watching an almost-2-year-old dance in front of the sliding glass doors all evening long (because she LOVES seeing her reflection) or listening to the ABCs 20 times in a row or singing Old McDonald... hehehe

Julia sure loves having an audience. Such a show off, that girl.

Anyway, we made a quick stop after breakfast Saturday to the beach because we thought since the guys were in Florida, they should at least SEE the ocean. It was fun to hand over my camera. I have so few pics of me and Julia.

So, up next for us this week:

Monday -- CT scan

Tuesday -- chemo

Wednesday -- appointment with Dr. Neel to get the results of the CT scan

Positive thoughts, positive thoughts...

Something's different

That's what the doctor said about the tumor in Mike's neck. He says it's not necessarily bad but wants to go ahead with a CT scan nonetheless. It hasn't gotten any smaller this time, that is for sure. So it has me a little bit worried because I really need to hear that this thing is shrinking. I am not prepared for anything else.

Dr. Neel also told us that there's a brand new test that might be able to pinpoint the origin of this cancer. He called it an "assay" which is some type of analysis of chromosomes or enzymes or some such thing. Anyway, he had the test run on the cells collected from one of Mike's biopsies. It seems to indicate that this cancer could have started in his lungs. (A total stunner since he's NEVER smoked. Dr. Neel says secondhand would be to blame. So if you're still smoking, STOP.) He's not totally sure the test is accurate because it's so new and other tests point to a head or neck origin, but he says it's more information and he's going to process it and review it and figure out what to do with it. It could mean a tweak in the medications he gets during chemotherapy, we just don't know yet.

Speaking of chemo, we spent 7 hours at the infusion center Tuesday. I was in worse shape than Mike. Poor guy has cancer, is undergoing chemo, and his wife is the one balled up in the recliner sick to her stomach and suffering from a migraine headache. He needs a stronger support system than me for sure. Anyway, so far Mike is hanging in. He cleaned the pool this morning and is at work now. The hiccups are back but not as bad. Usually after this long chemo, he's wiped out for a few days, so we're just trudging along.

Homesick

This month marks three years that Mike and I have been in Florida. Some days it feels like we've been here forever. As we were doing our annual evaluations for work (yes, at Gannett, you have to evaluate yourself) it occured to us that there are people in the newsroom, that even after three years, we've never spoken so much as a word to. Nor they to us. I'm talking, like, a dozen or so for each of us. And by newsroom I mean, editors, photographers, reporters, editorial staff, etc. We just never connected here. It's not that kind of place. Plus, working at night and having a baby makes it more difficult.

This news must STUN our former co-workers at the Daily Mail, where not only did we all work together, but spent our out-of work hours together too. It was more like a family there. I really miss that. I check in with my friend Philip's blog (http://grumpnet.blogspot.com) to see what everyone is up to. There's the chili cook-off, porch parties, the farmers market, drinks after work..

And I so desperately want Julia to have seasons -- I want her to be able to jump in a pile of leaves and build a snowman. She could play with Kate and Claire and Lily. Therese could teach her how to swim. And it sure would be nice to drop her off one night at Monica's or Becky's so Mike and I could go to a movie. We've seen ONE in the past 21 months.

I miss having a network of friends, especially now. It has been nice having so many visitors recently. Perhaps I can convince some of you to stay permanently. Home prices are cheap...

6 down, 6 to go

It just occured to me that we are at the halfway point in chemo. Woo hoo!

Of course, that doesn't mean it's over. In fact, Dr. Neel says Mike will probably need to have an Erbitux chemo every two weeks indefinitely. After the next six chemos, Mike will likely have a CT scan and the doctor will determine what route to take next.

I'm keeping my fingers crossed that it won't be anything as harsh as the major chemos Mike's having every three weeks right now. Those are brutal. It takes a week or so for him to bounce back. He's feeling much better now though.

We ate soft pretzels and played on the swings with Julia at the park, went out for Sunday brunch at the Blue Lemon Cafe (if anyone else comes to visit we'll take you there -- great Belgian waffles!), drank some of our favorite wine and even had a debate over HBO's new miniseries "Generation Kill." (I found their portrayal of the military as ignorant, uneducated hicks to be extremely offensive. Mike will have to get his own blog to explain his side. I won't be watching future episodes.) Anyway, the point is, we are back to normal.

And I'll leave you with a picture of our little firecracker on the Fourth of July.

Blah

That pretty much sums up our week. This second round of chemo has been rough. Mike's been extra tired, but not really able to sleep through the night. He's not eating and has been lightheaded. And now worst of all, he's losing his hair.

It started coming out a few at a time in his comb. Now it's fistfuls. And we all know there's not a ton there to work with... (I don't think he minds me saying that.) In a matter of weeks, he'll have to shave his head.

We all knew this would likely happen, but he's taking it kind of hard, and I can't blame him. It's hard enough to have to deal with this stupid cancer every single day and now he's got the added worry of not looking like himself, of being self-conscious and having to endure stares and looks of pity. My heart hurts for him on this.

Maybe our bald and beautiful friend "GDirty" can give him a pep talk. Remember how you finally relented and let Kris and me rub sparkly lotion all over your head? That was a good day!

Even Julia's been off this week. On Sunday, we celebrated because she peed in the potty! Then on Monday, she peed on the floor next to the potty....

So, today's chemo went ok. It was only an hour and half, a breeze.

*As I reread this blog entry, I realize it sounds like a real downer, like we need sympathy or like we've lost hope. We haven't. It's just been a blah week. We had those before cancer too. Overall, we're still optimistic and still living life. And we even have something to cheer us up and to look forward to. We're taking a little trip to Savannah (sans baby) when this regimen of chemo is over next month. Can't wait!

All is well

Long day No. 2 is over. Mike is putting in a full day of work today. He had some swelling in his face and neck this morning and last night. The nurse told him it's probably from all the fluids that were pumped into him yesterday. Not to worry.

The hiccups have also made a return appearance. This time, we figured out it was the drug called Cisplatin, which they gave to him first in the series this time. The hiccups started as soon as the drug entered his system. This has the doctor and chemo nurse baffled. But I googled Cisplatin and hiccups on my handy-dandy iPhone and found a study that says while the hiccups are rare, they are predominant in males, and the majority of the males who got hiccups with Cisplatin didn't have nausea or vomitting. Mike didn't have either of those after the last big chemo so hopefully he can ward those off again. Let's hope so.

We met with Dr. Neel prior to chemo and he again remarked that the tumor in Mike's neck is shrinking. I was taking notes and his exact quote was "there's no doubt that it's gotten smaller." He says that because the tumors in his lungs were spread from the cells in his neck, they respond the same to the chemo. So if the one in his neck is getting smaller, so too are the ones in his lungs. Normally, Dr. Neel wants a CT scan after the second round of chemo --which we've just finished -- to see if it's having any effect. But since he can see with his eyes that it's having an effect, we're going to wait until after the fourth, and hopefully, final round of this kind.
So that's it from here.

We're taking Julia to the beach for the holiday. Happy Fourth, everyone!