Another treatment draws near

Thursday’s first round of chemo with the new drug is getting closer and quite honestly Jeannie is just now starting to bounce back from the last treatment. It’s taken her longer to fight back from the fatigue, to get her energy back. Still she’s amazing in all she does get done. The cooking, cleaning and laundry she’s always handled plus her job and walking the dogs. So when she tells me how exhausted she was it wasn’t surprising but is still hard to believe. She even picked up the phone today to complain to Ohio Health’s billing department because she must have felt her blood pressure wasn’t high enough. Did we tell you the one about the billing for the anesthesia that was never provided? This goes back to when the chemo iv port was installed in August, normally done under anesthesia but Jeannie knew it could be done with a simple local. Ohio Health billed the insurance company for the anesthesia anyway and was paid for it. We get the bill for the balance and after requesting an itemized bill called this to everyone’s attention. (we’re also demanding some changes in the recovery room fees for recovery services that were never needed). Anyway the whole thing is being re-billed but we get a past due notice and the girl with the perfect credit decides to call about this not wanting it to go to collection. Naturally she gets some lacky who tells her the bill is due regardless of what might be changed. This defies logic but we’re talking medical billing here. I made a second call and got a second clueless lacky but did talk with his supervisor who agreed it only made sense to change the status of the bill. No doubt there will be more such fun in the future.

Jeannie has also started reading more. Normally a voracious reader, she’d kind of backed off the books a bit. But she’s gotten a couple as gifts and has been enjoying them thoroughly plus she got the kindle app for her Ipad and has downloaded a book so she’s back to reading her butt off (which is a good sign). She’s also received a number of cards and note which always cheer her and for which she is grateful. Here are a few. 

Four down (12 to go)

Thursday morning Jeannie received her fourth and final round of adriamycin and cytoxan. That’s the good news. But in two weeks she starts a weekly treatment of taxol. The infusion nurses told her she has done so well with these first two drugs that taxol may be a walk in the park for her by comparison. Jeez. The names themselves sound toxic. Adriamycin at least sounds like an antibiotic. In reality the nurses wear a gown over their clothing while administering it. The large syringes come in a plastic bag. In one of Jeannie’s last packages there was some leakage. Folks this stuff went directly back to the pharmacy. There was no thought of opening it to see if it could be used. Nothing is administered without two nurses confirming the id numbers and the patient number. When they saw the leak in the one bag it was outta there.  The reality is that the stuff is very toxic. The pharmaceutical companies haven’t even tried to pretty up the names. To me the generic names sound tamer than the brand names. Cytoxan is cyclophosphamid. Taxol is paclitaxel. Almost sound like something that wanted to be a pacifist. Jeannie also told me tonight that she has what she’s come to call chemo burps for a few days after each “treatment”. But unlike a pleasant little barbeque belch or chocolate cake burp, this has poisonous overtones. The lucky among us can only imagine.  

Although Jeannie’s white blood count remains strong she’s firm in her resolve to avoid crowds. Thus no Italian festival for us this weekend. Early Saturday morning she woke up with a nagging cough. Like 3am early. And she had kind of a runny nose that day too. It got my attention. But it looks more like the cough was from drying out her throat by snoring. A couple spoonfuls of honey and everything was better. The treatments definitely cause some additional fatigue and sleeping for a few days. The great unknown is how the taxol will affect her since everything hits everyone differently. The infusion is always preceded by a good strong iv dose of Benadryl. Healthy girl has never had Benadryl so she has no idea how it hits her (okay I’ve never had it either I don’t think). Since taxol can cause neuropathy she’s also come up with another cold treatment to fight off the affects of the chemo on areas that don’t need treatment. In addition to the cold caps on her head she’ll have cold mittens and booties for her hands and feet. She’s just going to be a little ice cube. But if it prevents her fingernails and toe nails from turning black and falling off what’s a little chill. And if it prevents a loss off feeling well it’s really worth it.

Tuesday is our anniversary. Last year we had a nice little getaway in the Hocking Hills. This year I’ll try to come up with a nice little meal at home.

Back from Chicago

If it hadn’t been for too much rain and construction, the trip to Chicago would have been great. The people at the Proton Center were great. Doctor Chang was great (even if he’s a Michigan man through and through, as in born, raised and educated there). He accepted Jeannie to the study (I figured he would be she’d gotten a case of the nerves) although none of this will take place until next year. We got to see Tom and Carrie, old friends we hadn’t seen in ages. We were in Northwestern territory as the Buckeyes managed to pull off an ugly victory. Upon arrival at our hotel the lobby scene was one of the more raucous ones I’d ever witnessed in a hotel lobby as it seemed to have a lot of locals watching the game. They were a happy group since their team was ahead. Glad we hadn’t arrived any later. They wouldn’t have been nearly so jovial.

                                                                                         

We packed about as much as we could have into the day Saturday. Although Jeannie is avoiding public places as much as possible she’d been firm in her resolution to make it to Joe and Michelle’s wedding. Our only regret was in having to leave early. It was a 10:30 ceremony with a luncheon reception. And it was one of the coolest weddings we’d been to. Everything, from the minister and the ceremony itself to the reception the location of the reception and the band was really well done. They got a touch of rain between the wedding and the reception but nothing to ruin their day.

Jeannie’s dress was originally made for her mother by her grandmother. In other words the dress is older than Jeannie. No word on the identity of the old guy standing next to her. So sadly we left the reception around two, got the car and dogs loaded and hit the road by three, only to remember what we’d forgotten about 15 minutes after our departure. So a half hour later than we’d hoped we were on our way. But just short of the Indiana line we hit some poorly planned construction work, a crappy little patching project really that had traffic literally stopped. We lost about another hour. Sheesh. Then when were rolling around Indy a monsoon hit. We probably dealt with about two hours worth of rain. The ride back started out much better. Tom and Carrie suggested an alternate route out of town and it worked great. But as we rolled back into Ohio what did we hit back the backside of the storm system we encountered the day before. Needless to say we slept soundly last night.

Chicago Adventure

We’re off to Chicago for Sunday mornings appointment at the CDH Proton Center. Yes a Sunday morning doctors appointment. Since they’re going to be doing some maintenance over the Columbus Day weekend, they’re working some weekend hours this weekend to stay caught up. And it works for us. As explained earlier this form of treatment is designed to target only the tissue you’d want to target, rather than subjecting surrounding tissues and organs to blasts of radiation. It’s been approved by the FDA since 1988 but they’re still doing clinical trials.

So now Jeannie’s getting a bit nervous. Anxious might be the better word. What if they don’t want her? What if what they have to say isn’t what we want to hear? Who’s really said anything we’ve wanted to hear lately? So any prayers and thoughts and wishes are appreciated. And the same goes for Uncle Denny, who broke his arm this week. When they offered colors for the cast he chose John Deere green, an appropriate color for him as anyone who knows him would agree. He broke it in a most manly fashion, trying out a new tool. And in true manly form he waited a day or two to see if it felt any better. Here’s a picture of him modeling the cast with his big ol’ Uncle Denny grin. (this is also a great way to get the word out to any family members who hadn’t heard the news, ya get the news and a reassuring photo that he’s doing great)

Since it will be late Sunday before we return from Chicago don’t look for any update until late Monday at best. You know how quickly we get updates posted. (yeah, that's a joke, I say a joke)