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Wednesday, March 31, 2010


So, where did I leave off...

The misunderstanding of what "starting March 22" meant?

Yes, I did GO there on March 22nd, and I got my body mold made and my pin-prick tattoos. Then I went home and the doctors and physicists spent a week planning.

This past Monday, I was invited to return on Tuesday for "X-rays to check to plans" (loosely paraphrased).

At that time, all looked good. I got a chance to talk to a radiation oncologist who actually has a personality and made eye contact. I told him about my concerns and the NYTimes article that raised them. He reassured me that I could rest easy because he was the doctor quoted in the article and he and all of his workers do not rely solely on the machines.

Eh, whatever. It's nice to think you have control over your workers, but I'll take that as the best I'm going to get.

Then they suggested that since I was there and everything was set up that I should just go ahead and get my first treatment. So I did.

Now, I go every day for a 10:15 appointment.

Two days down, 26 more to go.

Monday, March 29, 2010

Grouper with Tomato-Olive Sauce

A hit with three of us, even with the jalapeno in it. The same three of us enjoyed the Garlic Asparagus. In fact, it was so good, I was happily disappointed when Nathan decided that he liked it and wanted a full serving. Otherwise, I would have some left-overs.
You can get the recipe here. A resounding YUM!
I'm actually looking forward for fish for dinner tomorrow. I have no idea what it will be....If there isn't any in the freezer, I might have to have chicken.

I must get the recipe...

...for Naslada Bistro's Garden Tomato Soup. I crave it day in, and day out.

Sunday, March 28, 2010

Detox Foods

Citrus-Spinach-Pesto Salmon and "side salad" of mixed baby greens, tomato, cranberries, and cauliflower dressed with mushroom vinaigrette.

Garlicky Greens and salmon baked with red onion and lemon. The left over salmon made for great salad topping the next day.

Balsamic Glazed salmon with a mess o' spicy greens.

A "green" smoothie. Where to begin with the ingredients: silken tofu, blue berries, handfuls of greens, yadda yadda yadda. It was OK.

Edible Fish

I've always wanted to enjoy eating fish, but I just haven't been able to. I normally eat about three bites and then either think "this isn't so good...." or "bleh, it all tastes the same and is infusing it's flavor into everything else."

So, now seems to be the ideal time to learn to eat it. Why now? Because my taste buds are AWOL.

And, it's working. I've been eating it most days for the past two weeks, at least once a day: As an entree for dinner and leftovers on salad for lunch or a snack at night. Admittedly, I like it well done so there is no fishy texture to it;)

Tonight, I invented my own recipe: Citrus-Pesto-Spinach Salmon

Season Salmon with salt and pepper.
Coat Salmon fillets with jarred pesto sauce.
Cover thickly with handfuls of raw spinach.
Cover spinach with sliced oranges and lemons.
Lay slices of tomato over all.
Cover with foil and bake at....350 (does that seem reasonable?) until you think to check it. When spinach is all wilted, crank oven to broil until you think the fish is probably done.

Lay sliced

Friday, March 26, 2010

The first of 11...

...Herceptin infusions, that is.

I guess it could be called "chemo lite" even though technically, it's not chemo. For the next 30 weeks, I'll go to the infusion center to get a herceptin only infusion. The side effects, compared to chemo, are minimal.

Herceptin alone is responsible for decreasing breast cancer recurrence for people with my type of tumor by 40-50%. However, this does come with costs: an increased risk of heart disease (cardiomyopathy and congestive heart failure, both of which can lead to death) and an estimated financial cost of $100,000/yr.

As I said before, compared to chemo, the side effects (other than heart issues) are minor: fever, chills, muscle aches, nausea. These side effects are said to decrease with future infusions. I had six herceptin infusions with my first round of chemo (last fall, before my surgery). At that time, I also received carboplatin and taxotere. I experienced quite severe leg and joint pain, especially the last half of the treatments, which lasted until January (I finished treatments in November). That pain was attributed to the taxotere. However, now I wonder about that because tonight, for the first time since it went away, I experienced that same pain, on a much lower scale, in my knees while I was driving (before, it was severe enough to cause me to automatically take pain relief if I were driving anywhere out of town), I can "feel" my knees sitting in this recliner, and my ankles were aching at dinner. Granted, this is all at a much lower level, but it is otherwise the exact same pain, in the exact same places that I experienced before.

Now I wonder, will it get worse over time? Is this a fluke? Is it all in my head? Or, will the pain build over time, and if so, how intense can it get over 30 weeks of treatment? Was it compounded by the taxotere?

Will I actually become an old lady before I stop feeling like an old lady?

So, that's what I did today, and, hopefully, that's what I'll do every third Friday for the next 30 weeks. So far, I feel fine, other than those odd, minor aches. You can read about how herceptin works here.

Meanwhile, the detox diet has been going well. I just may have to get used to cooking separately for myself because after 1.5 weeks of no sugar, no saturated fats, no grains, no dairy and eating mostly various leafy greens, fish, chicken, and berries, I really don't find the thought of other foods very enticing. For some reason, tonight, I had an intense craving for Bob Evan's biscuits, but even that intensity was much less than just a few days ago when I could have killed for a mouthful of the fried rice I made my family for dinner.

Now, if I could figure out how to replicate the Garden Tomato Soup that is served at Naslada, I'd be one happy camper.

Monday, March 22, 2010

Just more hurry up and wait...

Actually, in general, there isn't a lot of "hurry up and wait" when it comes to cancer (or at least breast cancer). Once there is a diagnosis, things go fast, fast, fast. Or at least that was my experience. Perhaps that is due to the fact that I have good insurance.

Regardless, today was a prime example of "hurry up and wait."

I got measured, marked, tattooed (I never thought my first 5 tattoos would be so boring! Little pinpricks of ink, and yes they hurt), molded, CT scanned, and then I got to watch a dvd about radiation therapy.

Then the technician said, "It takes about a week for the planning. We'll give you a call."

I'm pleased they take their time and that the planning is so meticulously done. I just wish no one had previously said, "You will start radiation on March 22nd." Even my onco and plastic surgeon both counted, when they were discussing when to schedule appointments for after radiation was over, from today. Yet, I won't be finished six weeks from now. ARGH!!!!

This could interfere with a class I was planning on taking, which overall isn't that big of a deal, but still!

Silver lining: I was concerned that the echo-cardiogram I have scheduled Wednesday complicating the radiation schedule. Now it complicates nothing:)

Also, I'[m still pretty fatigued from chemo and sleeping quite a bit. Left to my own devices, I'm sleeping 12 hours a night with an hour or so nap each day. I was pretty concerned about managing the house and getting things accomplished with radiation (30-60 minutes there, plus travel time) each day. Maybe now that will be different.

And finally, I was supposed to try to schedule a lunch date with a friend. We've been trying to do this for a couple of weeks now, and our schedules just don't mesh. We are planning on trying again this week, and we'd left it at "I'll let you know what my schedule is when I start radiation." Now, maybe we can finally meet up!

Now, I'm just stressing that all the planning that will take place over the next week or so is done as meticulously as they promised me it will be. And that the damage will be minimal.

Sunday, March 21, 2010

Even more frightening than cancer... the treatment.

Tomorrow, I go for my first radiation appointment. I'll have tiny tattoos made that will help the doctors line up the radiation.

Then they will make a body mold so that I lie in the same position for ever treatment.

Then they will run some simulations.

When they are convinced that they are ready to zap me just enough, but not too much, in just the right places and as minimally as possible in the wrong places--which could take anywhere from 1-3 days and practice runs--I'll start getting zapped daily.

The scary thing about radiation is that if they screw up, it will kill me.

And the thing is, there is no way to know if they are screwing up.

Until it is too late.

Saturday, March 20, 2010

Life is a lot like Vegas

Life is like Vegas. We are all playing the odds. And, depending on our belief systems, someone else is the House.

Yes, whether you believe it is God or Karma or Fate, Vishnu or Krishna or They Flying Spaghetti Monster, something else has the odds in its favor. We will be gone; the rest of the world will be here.

Just last week, a young mother here in town--daughter of one of the most popular pastors in town, graduate student at the university, beloved wife, and, most heart-breaking, mother of kindergarten-age twin sons--was killed coming out of the Kroger parking lot. BAM! The odds weren't in her favor at that moment, and she lost. The 81 year old man who ran the red light and hit her car? Clearly, the odds weren't in his favor at that moment. I'm sure he didn't head out that day to kill someone. I haven't followed the story at all, so I don't know what condition he is in. I know that the accident has been described as "Worst. Accident. Ever." by my 17 year old son who arrived on the scene shortly afterward (talk about odds...given his gender and age, hearing sirens while he was out driving struck fear in my heart...will his odds come up?) and "horrific" by my 14 year old's physical therapist who witnessed it, and "horrendous" by aFacebook friend who witnessed it.

My supposition is that the elderly man was also injured, but I don't know for sure. It would be easy to say that he should have died instead. He is 81 and has lived a long life. However, we don't know what his life was like before this incident. Maybe this accident is the icing on the cake of a long, horrible, shitty life. Maybe someone is thinking, "...and to top it off, he was responsible for killing someone in a car accident." Maybe when he dies, no one will be at his funeral. Maybe, because of his injuries, he'll live several more years in agonizing, excruciating pain, wishing he were dead. Maybe, he doesn't care at all. Regardless, going with my assumption that he didn't cause the accident intentionally, the odds were also against him that evening, and he, too, lost to the House.

It all seems so random. The vast majority of people who get lung cancer smoke. Most people who smoke, don't get lung cancer. Who decides? While we know what increases the risk of breast cancer, why do some people get it and not others? Certainly, my weight could have been lower; clearly (as evidenced by my weight), my diet could have been better; undeniably (once again as evidenced by my weight), my lifestyle could have been more active. I'm willing to accept that I had some risk factors. Yet, I breastfed for 13 years nonstop. In general, our family diet, with the exception of certain periods where we fell off the wagon, wasn't horrible. Not nearly as bad as the "typical American" family's diet.

Even worse, I have a friend who has led a breast cancer unfriendly life. In general, she's done everything right, and snake eyes for her, too. In a sense, she lost twice. Her tumor had two characteristics that contribute to recurrence. I only have one. Plus, she's even younger than I am.

A lot of people I know are counting on having breastfed and not having a family history of breast cancer to protect them. That's like buying lottery tickets hoping to retire well.

I know when people go to Vegas and gamble, some people choose their game of chance by what the odds are. Yet, most choose because they like a particular game or feel proficient at a particular game.

Some people do have certain skills that increase their odds of beating the House. Some are better at statistics than others (I would be one of those "than others" in this situation) and, therefore, play smarter than others. That's the old "You've gotta know when to hold 'em, know when to fold 'em" player. There are people who can count cards. The House considers that cheating, but it's really more playing to the advantage of the intelligence and skill of the ones who can count cards. There are other ways of cheating that I only know about because I like to watch detective shows on TV.

Increasing your odds of winning at gambling can still result in losing. If a player, like my one son, has internalized the various odds, and therefore plays smarter than most, eventually, someone else will be dealt a better hand. At some point, that will be the House. He loses. All professional gamblers accept the fact that they will lose big on occasion.

Players who can count cards, I see as a metaphor for those people who do it ALL right. They are the equivalent of people who are so intent on living healthy that the joy is sucked right out of their lives. Those people full of rules and who never break them. I've known a few people like that. Counting cards, to my knowledge, isn't "illegal." But it does take the fun away from other players, whose odds of beating the card counter drop dramatically. Games are supposed to be fun. The playing field (table top?) is supposed to be level. It's the House that really hates card counters. It's the House that goes after them. It's the House that, in respectable places of games of chance, will throw them out. In other places, will break their hands or worse. If they get caught. Smart card counters know how far to push the limits of success. They don't get greedy. But others, BAM. Of course, none of them goes into it expecting to get caught.

I think we've all known those people who, either because of fear or hubris or whatever--maybe a desire to just be perfect--, focus their lives on preventing. I know I have known them: the mothers who show up at birthday parties with their own food for their precious offspring. I don't mean the ones whose children have legitimate dietary concerns, such as allergies or who live in an vegan family and want their child to be able to have fun, too. I mean the ones who just "don't allow sugar." At all. Ever. Because sugar is bad. I mean the people who, when invited to dinner, quiz the host about the origin of the food. Again, not because of legitimate health concerns, but as one of my friends said, "I think you don't care about contaminates." So, OK, my chili probably isn't good enough for you.

It's one thing to do your best to be healthy. It's something totally different to let that be your overriding focus. Life needs to be joyful. Joy can be found in sharing food with others. occasional piece of candy, an occasional slice of white bread, an occasional non-organic apple most likely won't hurt.

The irony is that even these "perfect" people lose to the House on occasion. Consider Jim Fixx as an example.

Once you've been diagnosed with cancer, a different kind of odds comes into play: the odds of survival.

Those are the odds I don't like to talk about.

In fact, I'll let you in on a secret here: I haven't asked my oncologist about my odds of survival. I know myself pretty well. I wouldn't say I'm a "glass half empty" kind of person, but if I hear "60% odds of survival," I'll think, well, that's nice, but that means there's nearly a 50% chance of not surviving.

I also avoid all references on the internet about this kind of stuff. Early on, I made a statement that I didn't want to hear about people who have died from breast cancer. Six months later, I still hold fast to that.

I have yet to talk to any person who has a serious illness who enjoys questions about survival. Outside of my immediate family, no one really has the right to ask me about my chances of survival. Or even my prognosis. The thing is, we are all hoping to be on the far right hand side of the survival bell curve. So, let don't drag us back to reality. Believe me, most of us face reality. We have doctors. They give it to us straight or most of them do. Let's just assume that things are going to end as well as possible.

The first time I met with my oncologist, she declared my cancer "garden variety." She has also assured my youngest son that "mom will get better." She is the mother of sons herself. I trust that she is operating under the assumption that cancer will not kill me. That I am going to beat the House in this particular game. That's all I need to know. However, she's an aggressive player, hence the extra chemo. Her patients do incredibly well. She's at least a smart player. Maybe she's even a wise card counter: not trying to make her fortune by beating the House, but also not drawing unnecessary attention to her play. I'm hoping the House isn't going to come after her where I am concerned and break her arms.

That doesn't mean that I'm not also trying to increase my odds of survival. I want to play smart, to give the House a run for its money. I'm willing to make changes in my and my family's diet. I'm dedicated to increasing my exercise. There appears to be a direct correlation to the type of cancer I have recurring and exercise. So, damn, an hour a day, at least 5 days a week, will become a non-negotiable as soon as I'm physically capable of it. I'm trying to figure out ways to decrease my family's exposure to environmental toxins.

The problem lies in how to be sane about this. The House is still out there. I can win at this game, but lost at another. The next time I get in the car, I could be killed. Heck, a meteor could land on me while I sleep in bed tonight. I could choke to death on my green smoothie. I'm not arguing that these things are likely to happen, but they could. I do what I can to decrease my odds of dying in a car accident. I wear my seatbelt. I drive defensively. But who knows when someone will run a red light and kill me? I'm not willing to avoid driving.

Just the same, I'm not willing to make my family a martyr to avoiding cancer. I'm not going to insist that my kids don't eat at friends' houses, nor am I going to refuse to allow junk food into my house. I'm certainly not going to serve a soccer team of teen boys sautéed kale and expect that they will return to my home. Nor am I willing to make homemade, whole wheat, organic sauce pizzas for 10 hungry boys. So, store bought will have to do.

I've been reading the book Anti-Cancer: A New Way of Life. This guy has done his research. Based on other research, I disagree with some of his claims, mostly in the area of the anti-cancer mind. I do agree with other of his claims. The relationship of the increase of cancer to changes in food production seems clear, for instance. The research related to exercise seems pretty black and white. In fact, when asked, both my oncologist and my breast surgeon claim that the one lifestyle choice everyone should make to greatly reduce their odds of cancer or recurrence is to exercise an hour a day.

Yet, there is no way I can feed my family totally organic. We can make some wiser choices, but there's no way we can go totally organic. Do I cancel my kids' soccer and use that money for organic food? Do I not pay my medical bills to buy every single recommended supplement?

Once again, the House is out there, and it will win at the game of life. So I have to work with what I've got. To make the choices I can make, when I can make them. To play smart in all areas of life. But I have to have fun at the game. To enjoy my life at much as possible. To balance living in the moment with looking toward the future. Because that's all I really have: this moment, this game, and what comes next.

So, yes, in a lot of ways, life is like Vegas.


So, I've been doing a post-chemo detox. It's nothing special, really. In fact, it's probably how I should learn to eat for the rest of my life. No wheat products. No refined sugar of any sort (no honey or maple syrup). Lots of antioxidants. Lots of greens. Lean protein. Healthy fish. Detox tea. A handful of supplements that support liver and kidney function.

It has only been a few days. It's a challenge. I really wanted those South Side Six gyros my family ate for dinner Thursday. The chicken fried rice I'm making them for dinner sounds wonderful. Yet, I'll stick to a salad with left over salmon bits and some sauteed greens.

However, my body is so full of toxic crap that I must do this for at least two weeks. Chemo works because it is toxic. The most recent chemo regime I was doing came with rules such as "wash your sheets 48 hours after chemo because the toxins seep through your skin" and "massage therapists should wear gloves the first 48 hours after infusions."

It's the cure that kills. Yes, there is no denying that sometimes people die from the cure. It's a risk. Very few come through totally unscathed. To top it off, chemo kills cells, cancer cells as well as healthy cells. Dead cells, like all living organisms decompose. Just like one rotten potato can make the entire cupboard smell for days, decomposing cells, especially nasty ones like cancer cells (or so I imagine), release toxins.

Basically, I'm a walking toxic waste dump.

And that's what I'm trying to remedy right now.

Some people have asked if I have noticed any changes since starting to detox. So far, I've only noticed one change. A change I didn't expect (actually, I had no expectations): my distance vision is much more clear. This started late yesterday. I was driving the boys to a soccer game last night and everything was so clear. Sort of like when you go to get your eyes checked (for those of us who wear corrective lenses) and they do that first "is this better?" And you realize that, yes, you really do need new lenses? It was all so crisp.

Even today I can tell a difference in my eye sight. This one is an annoying one. Because my distance vision is improved, that's affecting my near vision. I feel the strain reading my laptop. Come to think of it, twice yesterday I had to dig out my reading glasses, and I really haven't been using them much lately.

I'm not really sure what to make of this. It's just an observation. Who knows what else I'll observe in the next week and a half or longer.

Thursday, March 18, 2010

Quite Pleased With Myself

I ate 11 or more cups of dark, leafy greens least 4.5 cups of kale. At least 6.5 cups of spinach. Tossed some chard into my lunch smoothie **plus** that nasty, gross, disgusting green veggie powder that taints anything it touches.

Anyone think this might actually taste like berry? I'm not beyond cheating, nor helping my children cheat when it comes to getting 10-15 servies of stuff with roots and chlorophyll.

Wednesday, March 17, 2010

I'm an impatient person

This was posted to the Pema Chodron group on Facebook today. The title of the note was "Simmering with Patience." I'm really good at being angry. I'm horrible at being patient. I need to work on that.

Excerpted from "The Answer to Anger & Aggression is Patience", Shambhala Sun, March 2005.

That’s what it’s like with aggression: you can’t speak because everyone will feel the vibes. No matter what is coming out of your mouth, it’s like you’re sitting on top of a keg of dynamite and it’s vibrating.

Patience has a lot to do with getting smart at that point and just waiting: not speaking or doing anything. On the other hand, it also means being completely and totally honest with yourself about the fact that you’re furious. You’re not suppressing anything—patience has nothing to do with suppression. In fact, it has everything to do with a gentle, honest relationship with yourself. If you wait and don’t feed your discursive thought, you can be honest about the fact that you’re angry. But at the same time you can continue to let go of the internal dialogue. In that dialogue you are blaming and criticizing, and then probably feeling guilty and beating yourself up for doing that. It’s torturous, because you feel bad about being so angry at the same time that you really are extremely angry, and you can’t drop it. It’s painful to experience such awful confusion. Still, you just wait and remain patient with your confusion and the pain that comes with it.

Patience has a quality of enormous honesty in it, but it also has a quality of not escalating things, allowing a lot of space for the other person to speak, for the other person to express themselves, while you don’t react, even though inside you are reacting. You let the words go and just be there.

This suggests the fearlessness that goes with patience. If you practice the kind of patience that leads to the de-escalation of aggression and the cessation of suffering, you will be cultivating enormous courage. You will really get to know anger and how it breeds violent words and actions. You will see the whole thing without acting it out. When you practice patience, you’re not repressing anger, you’re just sitting there with it—going cold turkey with the aggression. As a result, you really get to know the energy of anger and you also get to know where it leads, even without going there. You’ve expressed your anger so many times, you know where it will lead. The desire to say something mean, to gossip or slander, to complain—to just somehow get rid of that aggression—is like a tidal wave. But you realize that such actions don’t get rid of the aggression; they escalate it. So instead you’re patient, patient with yourself.

Nearly Enjoyable Greens

I added a little too much red pepper, so mine were a leeetle spicy (measuring spoons can be our friend), but otherwise, these are edible, which is more than I can say for other times I've eaten cooked greens (I really do think that there is a "I like greens" gene, which I am missing. I've been in the presence of others who are raving about how "tender" and "sweet" greens are and that is not how I would describe the bitter, gnarly stuff I was eating). This recipe incorporates FASS (Fat, Acid, Salty, Sweet), which makes our mouths happy.

Garliky Greens (adapted from the book One Bite at a Time: Nourishing Recipes for Cancer Survivors and Their Friends by Rebecca Katz)

6 or more cups of bite sized, chopped greens (I used kale, spinach, and chard, and I'm sure I had more than 6 cups). Make sure you remove the tough stems and veins. Soak in water.

a glop of extra virgin olive oil

chopped garlic (I don't think you can have too much. I used jarred garlic, but the original recipe called for 2 cloves. I'm sure I used way more than that)

Red pepper flakes (the original calls for a pinch. That would have been a good idea)

Sea Salt (I'm cheap and use Kosher salt)

Fresh lemon juice

1) Heat olive oil in the pan.
2) Add garlic and red pepper flakes.
3) Cook until aromatic (30 seconds or until you get back to it without burning)
4) Add greens and salt. Saute until greens begin to intensify in color (and look appetizing).
5) Cook greens until they are tender. You might need to add a splash of water.
6) Add lemon juice to taste.
7) Sprinkle with Stevia (the original called for Maple Syrup, but, alas, I don't like the flavor nor do I have any.)

Saturday, March 13, 2010


....missed yoga this morning. It was 8:00, then it was 9:05.

I hate missing things I've paid for.

As Louis said, "You can do it at home."

As I said, "Sure, if all of you go away so I can have some quiet."

As Louis said, "Guess you missed yoga."

Friday, March 12, 2010

Don't know why this surprises me...'s not like I haven't been through chemo before. It's not like I haven't read others' stories about chemo.

I took my anti-nausea patch (Sancuso) off an evening early (Weds. night instead of Thursday morning) because some of the side effects were quite distressing. Almost immediately, little nigglings of nausea started, but I avoided compazine or zofran because I wanted to avoid the annoying side effects.

However, I rather discounted the cumulative effects of chemo. Those effects that get worse after each treatment.

So, yes, the nausea is worse. I feel like I've just eaten too much. Only I feel like this constantly.

And now I have mouth sores.

This shouldn't surprise me. I know these things happen. I know they will go away. I was so focused on finishing chemo I didn't focus on surviving the three weeks after my last treatment.


Thursday, March 11, 2010

Spring Break! part 3

Amy and I returned to reality today, which involved (a) getting confused on the way home and (b) lunch at The Forks in Pemberville. I'd provide a link, but apparently, there are none to The Forks.

I arrived home to find that the cleaning fairies had come earlier in the day. Nothing better to come home to....yes, I know that I should probably say "I arrived home to find my children ensconced on the couch, waiting for me....nothing better to come home to...." but really, they are there nearly every day. It's not every day my house is clean. That will probably never, ever happen again. But daily I find boyz on my couch.

Later, the boys had a soccer game, which I was to "coach." It was a brutal game. Lots of annoying poor sportsmanship on both sides, and the ref is the absolute worst ref ever on the face of the earth....

But we won in a miraculous come-back; the boys on the bench were kind and welcoming to Tynan; and did I mention we won? OK, they won. I didn't do anything but hang out and be the person over 18 on the bench. The boys do all the rest. They are a great group of boys.

Then home to a generously provided dinner, a fast trip to the grocery store to get stuff for lunches tomorrow, and now I'm ready for bed.

Back to reality:)

Wednesday, March 10, 2010

Spring Break! part 2

Cultural highlight of the day.

Does this not scream "Dawn and Amy!!!!!"

Up later, the highlight of the evening will be ordering pizza and watching three hours of Big Love.

What more could we ask for?

Tuesday, March 9, 2010

Spring Break! part 1

Probably 7 years or so ago, the Jeffers and the Hubbell-Staebles started camping together. About the same time, Amy and I started the tradition of closing and opening each camping season with a moms only trip. We haven't always gone far. Sometimes no farther than Portage. Most of the time, we end up in Gibsonburg.

Of course, every time we camp alone, it's pretty much guaranteed that it will rain (or snow), but please don't think we are miserable. We take high quality bedding; we've mastered cold and wet; we tend to eat pretty well.

Well, stupid cancer got in the way of a lot of recreation this summer. Between moving and cancer diagnosis, I don't think our families camped. And Amy and I didn't get our trip. So, here we are on "Spring Break" in a motel in Port Clinton.

Truly, we could be anywhere. We have simple needs. Beds. Books. Wifi. Cable tv. Good food. Naps. More naps. Even more naps.

We arrived in our street legal pajamas. Not much has changed. I'm not in street legal pajamas, but I can change:)

And we've napped.

The weather is wonderful, and I think we'll head out here soon for a short walk and then a wonderful dinner. Since we slept through lunch, we can justify spending a little more on supper. In our street legals.

Last night, we ate a Perch and Shrimp dinner with lobster bisque at the Jolly Roger. Yum. Who knows what we'll do tonight.

Big plans for Wednesday night, too:) More on that later.

I think we are the only women in the's us and guys working on the Davis-Besse project.

It's frequently like that when we camp, too:) Us and scuba divers and extreme rescue people.

Sunday, March 7, 2010

I will miss something about chemo...

...the early days after treatment and having to eat whatever sounds good. I can't not eat it because of the steroid driven appetite. I can't not eat it because if it sounds good, it won't make me feel bad.

I just finished an entire small pineapple and green olive pizza from Pisanello's. Since 1980, that has been my absolute favorite pizza and absolute favorite place to order pizza from. 352-5166.

I have cancelled checks that go back to September of 1980 for this treat.

Since we no longer order pizza as a family (because it's way too expensive), I rarely ate it, until I started chemo crashes.

I'm feeling the urge again.....

Friday, March 5, 2010

One more notch on the treatment belt...

Had my last chemo today.

For awhile, we weren't sure if I'd be getting it since I've been so sick this week from this demonic cold. However, since I didn't have a fever and since I haven't had a fever, and since I managed to not cough so they could hear how bad I sound, I got my infusion.

One week of being nauseous and feeling hung over, and this stage of this godforsaken journey is over. I did six infusions between Aug. 11 and Nov. 25. Then had a bilateral mastectomy Dec. 16. And just finished doing four dose dense infusions between January 22 and today, March fifth. I am so glad I decided to do the dose dense route. No way could I have done this and continued to work. I was wiped out after the first round of chemo, which was administered every three weeks, leaving me a week of feeling normal. With the dose dense, my blood counts never get a chance to climb. The lowest point is right around when I get my next dose. Pretty much everything is an effort, from thinking to...well, thinking and mental processing are both quite challenging right now. I feel really dumb much of the time. Physically, well, let's just not go there. It's depressing.

But that's all (nearly) behind me now. It's quite a relief. Quite. Truth be told, I fear the next stage of treatment more than I've feared anything in my life, but it is the LAST major hurdle I have planned. 6.5 weeks of daily radiation treatments. Guess it's time to get a schedule:)

I'm not going to let the fact that I was surrounded by women with recurrences today at the infusion center make me any less optimistic. I'll do my year of herceptin; my heart function will stay good enough to not screw that up; and then I'll never have to see the inside of an infusion center ever again, unless I'm visiting someone else who is there.

Oh, and I got to pick up my compression sleeves today, which means that now there is no reason not to exercise. Guess I'll start as soon as that personal trainer shows up.

Thursday, March 4, 2010

Why tomorrow must be my last chemo

The meaning of "must" there works either way: (1) why it is imperative that chemo end tomorrow as well as (2) why there is some sort of indicator that tomorrow is the last chemo.

Today, I actually said, "This is my favorite episode of Trading Spouses" and then I saved it on the DVR.

Yes, that means I've seen the episode more than once. And, yes, I'll probably watch it again.

The only justification I have for this is that these four rounds of chemo have really wiped me out. In fact, I hit nadir at just about the time I do another round, which means I really have no "good days." I do have days I'm not nauseous, but I otherwise feel like limp celery. I nap daily and get physically tired grocery shopping. I'm so looking forward to having some energy. When I have energy, I can actually care about things. We've all heard the saying "Don't sweat the small stuff, and it's all small stuff." I don't at all subscribe to that adage. In fact, I think it is pretty stupid. Some stuff deserves sweat. But for the last 6 weeks, I've pretty much been unable to sweat even the large stuff.

I've said, and I do believe, that if my kids survive this year without being too damaged, it will be a successful year. But "things" have certainly gone by the wayside, especially lately. I don't know the last time Tynan was read to. He rarely reads any more. It's been forever since I've challenged Nathan with academics. I've not even spoken to Aidan's physical therapist. Just about all family routine has ceased. Household routine is non-existent.

So, yes indeedy, it's time for chemo to end. I've heard of people who've done chemo and not let it interfere with their lives, but I'm just not capable of doing that, to the detriment of my family life, that's for sure.

And, yes, I've found a favorite episode of Trading Spouses.

For this reason alone, tomorrow must be my last chemo.

It. Must.

Guess Who

Out of all the games we've owned and own, one of the most loved is the game Guess Who. I understand why young children might like it. I don't understand the attraction teens have to it. But I still find it out sometimes when only teens have been in the house. One time we hosted a 4-H game night, and out of all the games available, only Guess Who had a wait list.

So, those of you with young children, may I suggest Guess Who as your next game purchase? Personally, I prefer the traditional game. We also own the Marvel version of that game. I'm not so good at that. It's hard to ask good questions when I don't know the difference between a costume (or do super heroes wear uniforms?) and their skin. Is that a mask or is that her natural appearance? I have no clue.

Overall, though, the game is easy to play, promotes critical thinking, and for some reason, is attractive to kids of all ages. Best of all, once the game is assembled, there aren't a lot of little pieces to keep track of, just a stack of cards. Even my family has managed to only lose one card in the 7 years we've owned the game.

But this post isn't about the game Guess Who, at all. It's about all the various people who read my blog and how I know them. Some of us go back to high school, some to undergrad days, some to the early days of virtual community, some to my days as a LLL member. Some know me from the homeschooling community. Some were classmates of mine. Some were students of mine. Some are colleagues. Some are an odd combination of a lot of these categories. Some I haven't seen or spoken to in 20 years or more. Some, I feel like I know so well, yet we've never met face to face or spoken.

I first got online in 1995, when Aidan was a baby. And I immediately joined an email list devoted to parenting. It's there that I learned a lot about virtual friendships. That list spun off into other lists, and 14 years later, I'm still in nearly daily communication with some of those people. Some of us have gone out of our way to meet in real life. Some of us don't even consider that there is a difference between face to face friends and virtual friends. For those of us involved in the early internet email lists, the success of Myspace and Facebook isn't surprising at all. Furthermore, we understand that true friendship can exist even if you never see each other face to face.

And then there are the local people who I knew, sort of in passing, prior to facebook. Since facebook, some of us have become closer friends.

Of course, since I'm no longer homeschooling, my circle of friends is sort of shifting, perhaps shrinking. I just don't see those friends much any more because we don't show up at homeschooling activities. My kids friends really aren't the homeschoolers any more, except for Tynan who still has one or two (of course, making friends in school has been a bust for that poor kid).

However, the tentacles of friendship in the community have been made quite clear to me as I've been sick. The people who have offered to help, who have made meals, who have cleaned our house, who have offered words of support. It's amazing.

I think Bowling Green is an awesome community. In many ways, it's very similar to some of the wonderful virtual communities I belong to. One person who has been helpful, for instance, was my hall director my freshman year of college. Then I had her son as a student. After I bought his outgrown clothes as a preschooler at a garage sale. and then she ended up being my son's first college advisor. Follow that? Other people were people I was in LLL with all those years ago. I have a great silk scarf made by the LLLL who helped me nurse after my c/sec with Nathan when I was sure my guts were going to spill out of me and it would always hurt to hold my baby. Others, I helped with nursing problems. Some go back to the days of playgroups. Others are people I've only recently met, whose oldest children are the age of my youngest. Some have NO "mothering" relationship to me, they are colleagues. It's amazing.

So, really, who are all of you out there reading this?

Wednesday, March 3, 2010

My new bff arrived today

This arrived today. It's my new BFF. It's a carbonated water maker. It took me a long time to decide to invest in it. I've been dithering about it since before the winter holidays.

One of the odd things about chemo is that it alters your ability to taste. Sometimes, people develop an affinity for tastes they've not before liked. One friend tells me she had never been a pop drinker before, but during chemo, she couldn't get enough of it. Others suddenly don't like favorite foods. I've developed an overwhelming hatred for the smell of cooked green peppers. They were never a favorite food, but I never turned them down. In fact, I usually didn't really notice them. Now, though, they are everywhere. I smell them while I'm walking down the street. Other people who never before ate fast food, find themselves compelled to eat Burger King. There's no rhyme nor reason to any of this (although, I do have a theory about some of the more common attractions/cravings).

One long standing drive I've had is for soda water. It's all I want to drink. I've been buying cans of it at an embarrassing rate. It doesn't have to be flavored. Plain is fine. I've tried less expensive methods of satisfying this urge. Two litre bottles don't work because they don't maintain the carbonation well enough.
So, I took a leap of faith and bought a sodastream with some of my Christmas money.

All I can say is wow, wow, wow! It's awesome. For starters, it doesn't use batteries or electricity, so finding a place for it in the kitchen was easy. Second, the bottles are reusable, which makes the green in me feel good. Third, the water tastes wonderful, much nicer than something coming out of an aluminum can. Fourth, it's easy to operate, which is really important for me, because I am sort of mechanically impaired. And, finally, it's red, which is my favorite color for the kitchen.

I'm happy I took the leap.

Welcome my new bff. May you serve me well.

The more things change

...the more they change.

I've always been one to choose fewer medical interventions over more. When I was having babies, I chose midwives. When I chose midwives, I chose ones that were not interventionist. I had one baby at home. I managed my son's ear infections with alternatives to ear tubes when it looked we were going to be encouraged to go that route.

When I have a cold, I have my own way of handling it that has always worked pretty well.

It's rare that I take antibiotics; my kids need clear symptoms of bacterial infection before I'll give them antibiotics. I was all about minimizing antibiotic usage before the medical community jumped on the bandwagon.

Then the whole cancer thing happened.

Once a person is diagnosed with cancer, there is no "bandwagon" per se. It's a high speed bullet train. Or at least it is with breast cancer. There are scans of various types: CT, PET, MUGA, MRI, probably more that I've forgotten. There are blood tests and appointments. Various minor surgeries: biopsies and port placements.

Suddenly, you have to decide on doctors to treat you. Before, I'd always chosen doctors willing to work with my quirky ways. Our family doctor, I chose because I knew I had a kid with pneumonia, our current doctor (at the time) couldn't see him and wouldn't call in an antibiotic until he did...instead he suggested I take the kid to the ER, so I called a doctor who was advertising for new patients in the paper. It's a good fit. His passion is sports medicine. We've used him quite a bit for that, too, and he at least doesn't argue with me about my quirkiness.

But when it comes to cancer. Wow. How do you decide? A bad decision could hasten death at best, result in imminent death at worst. I am very fortunate that I had a friend I could turn to, and I chose her dream team of doctors. My cancer is pretty black and white. "Garden variety" as my oncologist put it. The treatment is pretty much the same from doctor to doctor, clinic to clinic.

This is not something that I want to take chances with. I've read of people "going off the grid" so to speak with their cancer treatments. I respect those choices, but I'm not willing to do that. I'll take my supplements to enhance treatments, to support my health during treatments, but not in place of treatments.

Um, no way.

I did make one unconventional choice in all of this. That being to have a tissue expander inserted on the side to be radiated. My plastic is OK with it; it's pretty cutting edge in the literature; it makes the radiation a little more challenging; it gives more options for final reconstruction if it works. If it doesn't work, nothing is really lost. Because I heal well, my breast surgeon and my plastic surgeon trust that--physically--I won't have a problem. It's up to the expander. It needs to survive the radiation. The radiation oncologist I first saw wasn't pleased, but he was young and had little experience. I've since switched to a different doctor in the same practice (there really is only one radiation oncology practice here) who has 25 years of experience, was recommended by my plastic surgeon, and didn't bat an eye at "the plan." Personally, I'd not choose the guy as a friend. He was pretty off putting, didn't make eye contact, hadn't read my chart before coming in to examine me, very off putting bedside manner.

And that's the thing. I'm NOT choosing a friend. I"m barely choosing a partner in my care. He can be horribly offensive to me, as long as he's good at what he does. I am trusting he will not damage my heart too badly (there will be heart damage, it goes without saying). I don't have to live with him. Or even share a meal with him. I need him to do his job, do it well, and I have to trust that neither my oncologist nor my plastic surgeon, both women very proud of their work, would recommend someone if they thought he was going to impede their work.

All of which is a long way of saying that I've made some choices in the last six months I might not have given great consideration to in the past. For instance, my family all got the H1N1 vaccine. No questions asked. My family and I all got the seasonal flu vaccine. My first ever. Tynan's first vaccine ever. No questions asked. I didn't even investigate other alternatives. Whatever was in the doctor's office was fine.

And today, I started taking antibiotics for a cold. Why? Because if it is more than a cold, it needs to be dealt with. I don't have an intact immune system. I'm sure it's a virus, though, because I don't have symptoms of a bacterial infection. Plus, I've already taken a child to the doctor for this same illness, where I was told, "It's a miserable cold." Truth be told, my child was so miserable that I was hoping that he'd be prescribed antibiotics. Alas, he just had to suffer. Even cold medicines barely touched the symptoms. Then, the other two kids got it. Same progression of symptoms. No fever. Typical cold symptoms .

At the same time, if I'm on antibiotics, there is that much less of a chance that I'll get a secondary infection. Or, the antibiotics will cure any little bacterial infection lurking in there. Hard to imagine that there isn't some sort of bacterial infection in full, snotty sinuses.

Even more importantly, if I'm on antibiotics, I'm less likely to be turned away from chemo on Friday.

The only thing worse than getting chemo is not getting chemo.

As much as I dread it, it needs to be over. Friday is my last chemo. It just needs to end. And if I take these antibiotics, the infusion nurses are less likely to freak out about less than ideal health.

So, without even thinking about it, I skipped off to pick up my zithromax. Yep, Z-Pac for a cold. I've never taken such a strong antibiotic in my life. None of my kids have taken it.

Interestingly, two hours after taking the first dose, I actually think I feel better.

Maybe it wasn't just a cold.

Tuesday, March 2, 2010

Why teenagers and young adults make us want to bang our heads on the wall...

...or tempt us to bang their heads on the wall.

For those of you not playing along on facebook today....especially those of us who teach first year students and those of us living with teenagers....remember, they don't think like us.

In fact, they frequently don't think.

I can see evolutionary advantages for this...after all, in different contexts, we need people who don't think twice about doing things those of us with mature brains might not consider...."Hellz no, I'm not wrestling that saber tooth...." or "climbing that cliff to get those bird eggs doesn't really seem worth the effort...."

We don't really benefit from the adolescent ability to ignore risk now, though, outside of the military. I seriously can envision my sons' soccer team storming a hill. Can't picture me and my friends doing the same. The soccer team, given the right incentive--be it food or hate or simply a dare--would be all "HoooRah! Get the enemy...shoot shoot, bang bang...we are bullets will kill them; their bullets won't touch me. I'm magic!" My friends and I would be at the bottom of the hill, saying, "That's an awfully long hill. Maybe if we come back tomorrow, erosion will have made it a little less strenuous....can't we talk this out? Oh, I just remembered, cereal is on sale at Meijer and I need to go pick some up....what are we doing here? I don't remember.....we could get hurt if we go up there....why do I want to do something that might hurt me? Can't we all just share some chocolate and be friends? I think those other people's bullets are out to get me...."

After all, how many of us look back on our youthful shenanigans and say, "It seemed like a good idea at the time..."

Things to keep in mind....

Although I find a lot of NVC theory and practice to sound pretty cult-like (does anyone remember Carlos Summer--"Hello loves..."), there are a lot of good reminders here, such as this feelings inventory. It's rather exhaustive. Perhaps more importantly, this needs inventory, which can help us more clearly understand ourselves and those around us.