Treatment Three in the rear view mirror

Round three with chemo went as well as round two, if not better. And round two was definitely better than the first go round. By the time she got home from work last evening and we walked the dogs and got some dinner and she packed my lunch and finally sat down somewhere around nine she was exhausted. But it was more the result of a lack of sleep rather than the chemo. Even though we’d been through it a couple times and had a pretty good idea of what to expect neither of us slept very well the first part of this week. And on Wednesday night she really didn’t sleep well at all. So last night she was in bed by 9:30 but was up and rolling as normal this morning. She had to drive across town to get her three thousand dollar injection to restart her white blood cell production, then took Tillie to the vet and then to the park, came home and chopped up a bunch of bell peppers for the freezer and finished off the last loads of laundry (she’d started laundry after her treatment yesterday but before heading to work). Guess you could say her energy level remains strong.

The other thing that’s become abundantly clear is that one of the anti nausea drugs leaves her, um how might we say, a little cloudy. Well it’s right there on the warning label advising her to stay away from heavy machinery. It also brings to mind all those people in the recent past that went through this without the benefit of today’s anti nausea medications. If you read about the medications and their possible side effects they almost sound as bad as the awful stuff they use for a cure in the first place. But in the bad old days not that long ago there was nothing they could give these people. I guess you find your bright spots where you can. Going into yesterday afternoon dinner was a TBA sort of thing. She pulled some smoked chicken we had frozen out of the freezer. As the dog walk ended our friend Fergy happened to pull up with a container from a pot of chili they’d made. And dinner fell into place. (Fergy and Angie had no way of knowing but it was the perfect chili for Jeannie, three kinds of beans and the right touch of light heat) To the pioneers of chemo, food alone couldn’t even sound remotely possible, let alone smoked chicken and chili.

We’re also continuing our endeavor to keep this whole experience low key. To date only two people Jeannie works with are aware of this, her immediate supervisor and one other lady she works closely with. Nobody in our neighborhood knows to this point. Outwardly we seem like very social people. I guess we are but we’re also intensely private. And by keeping this on the down low as long as we have has succeeded in what she’d hoped to do from the very beginning. Not being treated any differently than anyone else in her day to day life.

Coming up in a future post, why you should get detailed bills. A teaser. At least 12 grand in services never rendered that the insurance company has paid and a balance of 13 hundred the provider hopes to collect from us. Note to Ohio Heath, there’s a chargeback in your future.

Uneventful Update

Uneventful is pretty welcome around here. Grateful to be leading as close to normal a life as we can. Saturday it was things like watch the Ohio State game (if you can call that a game) getting apples and cider from our favorite little local apple grower (the best stuff often comes from tiny little places you might miss if you blink driving by). And of course dog walks. Dog walks are usually a routine walk through the neighborhood. But sometimes the humans toss in a special side trip, like a walk through Prairie Oaks Metro Park. 

For those who are unfamiliar it was once a working quarry but has now been restored to the prairie land it once was (the bodies of water a reminder of its brush with the quarry industry). Dogs love it because of all the great smells.

As the weather starts to change we’re taking notice of people sneezing and coughing. With Jeannies compromised immune system she’s getting pretty sensitive about this. The point was kind of driven home last week when we were having dinner in a restaurant and the water girl kept coming by to refill the ice water. Tip to wait staffs everywhere. Don’t go from table to table grabbing glass after glass, touching each one and passing along whatever you come into contact with along the way. Something you normally wouldn’t think much about unless you’re suddenly protecting yourself from microbes. I could be living in the basement if I dare to come down with something. I’m definitely keeping up on my vitamins and supplements.

Thursday brings the third round of the first biweekly chemo series of four (to be followed by a dozen weekly sessions). So say a prayer, keep a thought, cross some fingers whatever you’re inclined to do. It’s appreciated.   

We're way overdue for an update

But hey it’s a good thing. Jeannie’s been doing so well the news is all just kind of boring. For instance we went out to dinner Monday. She did her usual chores Saturday and Sunday. She went into work for a few hours last Friday, the day after chemo and her usual day off. At the end of it all she was a bit on the tired side and kind of concerned until she took stock of all she HAD done and realized she SHOULD be tired.

Also last weekend she was out taking some shots of the dogs. OF the dogs not AT the dogs. And here’s one of the shots.

By the time we got to Thursday she was even up for taking the dogs to “dog school” which brought to mind this recent post by Jon Katz, stolen directly from his blog BedlamFarm.com and without his permission (although I don’t expect any complaints or written citations from the blog police)

Welcome to human obedience class,
the class will meet every Tuesday night for four weeks,
do not bring humans who do not like other humans,
or cannot communicate in a civil way, this means
no Congressmen, people of the left or right, bankers,
tech support or customer service reps or
radio or TV talk show hosts.
We will teach basic obedience:
come when called, stay when told, feed when commanded.
The class will instruct you on  basic obedience:
how to get humans to stop
when you want to sniff something, pee on a bush, growl at a squirrel
or a cat, walk in a crooked line, throw a ball when looked in the eye
and given the command of three barks. How to make a  human take you into
bed, let you on a sofa, buy those gourmet bones.
In class two, we will learn how to maintain eye contact with humans,
triggering the "guilt response," where humans say "awww, puppy"
and offer a treat, a hug, walk or a meal.
In the third class, we shall learn to move pull humans along a path while
they curse and shout and make curious noises. We will
teach them to wait patiently while we sniff for food and sniff other dogs.
Class four is about learning to not emotionalize humans.
They are not like dogs,
they have poor instincts, are easily confused,
possess few natural hunting or survival skills,
and generally impaired senses of smell. It is impossible to train them
well if they are emotionalized, they are simple, elemental creatures,
very needy, with very short attention spans. They are not only
willing to be manipulated by dogs, they seem to love and need it.
Classes are important if you wish to live with humans.
Training is not about obedience, but communication.
We need to show them how to be safe in our world.
First, we will learn to read human body language,
how to read their posture, facial expressions, rear ends
when they move.
Humans make a wide variety of sounds, they are given to shouting,
waving their arms, making loud guttural and whining noises,
especially when they are running after dogs, shouting commands.
They are nearly helpless when left alone, especially outside,
they have no instincts to speak of, speak too much and
need exercise several times a day.
Among the lesson topics: how to communicate with rescue humans
who have been abused – most humans seem to be – how to choose a human.
We all love humans here, and want to help them.
We believe the only way to choose a human is, in fact, to rescue one,
there are so many of them in desperate
need of a dog, it is almost immoral to choose a happy and healthy one.
Be prompt, bring leashes and some treats for training – humans call them donuts.

Chemo and pizza anyone?

Two weeks ago when Jeannie did her first chemo and was so nauseated one of the nurses told her to try starting her anti nausea medication 24 hours prior to the next treatment. There are actually two drugs she’s taking, one is a once a day that is only three days in duration. The other she can take as needed. Seems to have been excellent advice. Same as last time she went to work and did her normal Thursday. But last time she called me and told me I was on my own for dinner. This time she came home with a pizza from Planks. First time she ever had it. I hadn’t had it in years. I’ll see how I feel in the morning after the gluten intake. But it tasted damn good and it didn’t seem to bother her a bit. After pizza it was a walk through the neighborhood with a couple grateful dogs (chemo days seem to be particularly sucky days for the canine residents of the household).

Today was the first day with the Penguin cold caps that are worn before during and after chemo to protect the hair follicles. If she’d known about these she would have had them from the start and has had some hair loss (but she definitely started out with quite a lot of hair). To and from and during treatment these are stored in dry ice and changed every 20 to 30 minutes. This makes for a couple rather heavy coolers so I opted to buy new ones with wheels last night. All the staff members we talked with save for one had never seen these before. The nurse who had was working at another facility at the time and said they worked for the one woman she saw use them (that was welcome news). So now there are a bunch of people at the center interested to see how well these work. Here’s Jeannie wearing one during her infusion. 

You know you’re in a medical facility when a head dress like that doesn’t draw stares, although it did get some double takes. Jeannie’s pre treatment blood work was also very strong. In fact it was all normal.The only downer was she'd lost four pounds. And she is eating well. The last few nights she's even chowed on some Handel's ice cream, which is anything but low fat. 

Oh by the way I noticed that when she got home from the treatment she did some laundry. It'll probably be an early bedtime tonight since on the nights before chemo neither one of us seems to sleep very well. Both times now I've slept worse than her, to the point you'd think it was me getting the treatment. We were up today at five, all part of getting one of the earliest appointments and getting it over and done with so she can be on with her day. For a minute it didn't look like we were going to get that lucky for the next time on the 24th but Heidi pulled off some scheduling magic and helped make it an all round good morning (good as a chemo morning can be).

Some Updates

Another treatment looms tomorrow morning. Cross your fingers and toes Jeannie’s hair is still hanging in there after the first go round. And today the scalp cooling cold caps arrive in the nick of time for the next dose of chemo. They’re called Penguin caps for a reason they’re quite cold and kind of penguin looking. As might have been explained before they’re worn before during and after treatment to slow the chemo when it gets to the scalp where it would normally damage the hair follicles. And while her hair is hanging in there she's getting a little self conscious of it as your only supposed to wash what you have once a week. This means it spend a lot of time in a braid or a net. Today she went off to work with a hair do that included a scarf. She says some of the girls at work have to be wondering what's going on but at least her boss knows and the rest will sooner or later.

A second development yesterday in that Jeannie got herself accepted in a study program using proton beam therapy instead of conventional radiation. Unfortunately it’s in Chicago. But there are barely over a dozen of these types of centers operating in the entire country and they don’t all treat all types of cancer. One benefit of this type of treatment is that it’s more targeted so less of the body is blasted with radiation. A second is that she may get by with fewer treatments. Either way it would appear that in the first part of next year she could be spending the better part of her week each week in suburban Chicago.

The treatment is more expensive than conventional radiation causing a hot debate over is it worth the extra cost if the outcome is the same. But these people look at cold hard outcomes and not side effects. The longer we’re around this the more we see that side effects are the dirty little secret everyone tries to hide in a closet like a crazy old uncle.

So for now the good news is her energy remains great, she’s doing her full work schedule and isn’t slacking around the house either. In a future post I’ll get into how she’s packed the freezers to make sure there’s something for dinner when no one is in the mood to cook.

The stuff they don't tell you

A week ago Thursday Jeannie had her first chemo treatment. Leading up to this everyone simply flatly said you’ll lose your hair. “But it will grow back”.  “Often thicker than before”. Well to a male bystander who’s been follically challenged most of his adult life this is low impact. I knew she’d lose her hair. Didn’t really faze me. Fazed her though. For a girl with long blonde hair it was devastating. This was HUGE. But all these people who assure her that they’re there for her seem to keep leaving out details. And for the past two days we’ve been busy with a little investigation work, and getting over some anger.

Seems for some time now there’s been a cold cap therapy that’s done at the same time as the chemo. Doesn’t work for all cancers or therapies. Doesn’t work in all instances. But has been used around the world (not FDA approved in this country of course but there aren’t any big pharmacological companies campaigning for it either). It’s also been used for years and years. Such that anyone working in the cancer field is either very familiar with it or has been snoozing under as rock. Plenty of centers in other states clearly support it, participate in test programs and so forth. None in Ohio though. Glad they all advertise how cutting edge they are.

In a nutshell the way this works is you wear a cap that cools your hair follicles to protect them against the damage caused by the chemo. You cap up before during and after treatment. It’s supposed to happen with the first treatment and you change the caps every twenty or thirty minutes. Aha, a bit of an inconvenience for infusion centers. But from all evidence lots of them cooperate. A patient who looks better feels better. I’ve heard repeatedly how much better a certain person would feel if she looked in the mirror and saw herself rather than some “circus freak”.  Or can go to the store and not have people look at her and realize she has cancer. Makes sense doesn’t it? But of all these people who are “there for her” not one brought up this possibility. There is an expense. It’s not necessarily covered by insurance. But it’s not something we can’t afford. And a lot of people have blown any sense of trust we might have had in them. They’ll be told, bluntly but politely when we show up for Thurdays treatment with caps on ice. As her friend with thyroid cancer told her when she started down this path “you’ll find you’re all on your own”.

She’s done plenty of internet searches since this started and has learned a lot. Of course with the internet you have to filter out a lot of crap. Lord knows the internet pumps out crap by the ton. It makes  television look like a chump. But we’d both accepted the baldness as fait accompli. Well her hair has been hanging tough and though the cap people said they can’t make any promises we’ll give it a try. Not much to lose at this point. Maybe she wins. But I could name for you a lot of people who’ll never win back her trust. I figured this out about her from right around when we first met. Burn her once and you’re done. No second chances.

Something else we’ve found is that people who might want to post a comment in the comment section can’t necessarily do so unless they have a Google account or something. Still trying to figure that one out but in the meantime feel free to email us if you’d like, we read ‘em all and all are appreciated.