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Monday, May 31, 2010

The Story of the Candle

Once upon a time--many, many years ago in internet time--there was a group of women who came together to share common beliefs about parenting. As the group, which started in 1995, grew and grew, there developed several off-shoot groups, known as "email lists."

Because we differed so widely in belief systems, and yet, worked so hard to be respectful of others' religious and spiritual beliefs (not that we didn't snipe at each other for things like cloth vs. disposable; stay-at-home vs. work-out-of -the-home; hospital vs. homebirth), we needed to develop something to symbolize our focused energy, be it prayer, meditation, blessing, chants...whatever.

One of these women, was Katie Granju, at the time Mama to to two young children and a third on the way. Shortly after little Elliot was born, he became quite ill. Feeling helpless, yet wanting to help, the other mamas decided to focus their energy on Katie and Elliot by lighting candles in each of their homes and spending time, wherever they were in the world, sending their healing energy to baby Elliot.

Elliot made a spectacular recovery.

Thus, the Story of the Candle was born.

Ever since then, Mama candle power has been called for when needed.

Katie needs the energy from the Mama-verse


We use the word "perspective" quite a bit, or at least it seems that way. We are always saying, "To put it into perspective..."

And that's what I've been doing for the past few hours.

My friend, Katie Granju, has a critically ill son. You can read about his most recent journey here, if you choose.

H is in critical, nay dire, condition today.

Instead of going to graduation parties or throwing one for H, himself, Katie is sitting beside his bed in an intensive care unit, listening to a ventilator breathe for him. Every time the baby inside her, due in July, moves, I am sure that just intensifies his stillness.

I can't even begin to imagine.

After the year I've had, I thought I'd learned about focusing on what is important and keeping things in perspective.

But H's story is sharpening that focus. As my kids get older and older, I realize that parenting gets more and more complicated. Whereas I used to be concerned about choking on hot dogs or kids not holding my hand in a parking lot, now I'm wondering, "Do they know all they need to know about birth control?" and "Will they remember and act upon the values I've tried to instill?" and "Will other drivers see my kids' car?" Ultimately, what it boils down to is a realization that I have very little control over them any more.

While H has made a series of "bad choices," --my how innocent those words sound coming out of the mouths of mothers of elementary school and preschool aged children...."Tommy, you made a bad choice when you snatched that truck away from Johnny"....--which ultimately led him down the path to the position he is in now, the roulette of genetics compounded them all, and now he, his mother, their family, friends, an entire community is being affected by it.

This is what is helping me keep things in perspective.

True, the pile of disorganized, wet shoes left in front of my kitchen door is highly annoying. True, the teen angst that seems to roil just below the surface all the dang time puts my teeth on edge.
True, I've slacked in my parenting duties this past year.

However, every day with my children is a gift. Every memory we make could be the last. I need to keep that in mind and work to make better memories. I need to not sweat the small stuff, because it is NOT all small stuff. Lots of stuff is pretty large.

As I was writing this entry, H died. His suffering has ended. Others' has just begun.

Hug your loved ones and friends.

Sunday, May 30, 2010

A step toward normal

I went camping this weekend.

It's Memorial Day weekend here in the States. A long weekend. The official kick off for summer. Pools open.

Camping is a pretty traditional and normal activity for this weekend. In fact, there have been many Memorial Day weekends when I've been camping.

But this time it was special. It was a normal activity.

Amy and I have developed a sort of ritual over the years. We camp with our sons. We camp with our families. We camp with other families. But we *always* make the first and last trips of each season a moms only trip. Indeed, this has meant that we've camped in the snow, sleet, rain, and cold. Generally, we can count on cold. Over the years, the two of us have taken our five boys on many trips by ourselves. And we've, of course, gone with our husbands. And we've gone with neighbors, friends, relatives.

But the first and last have always been moms only. Generally, just the two of us.

Last year, thanks to stupid cancer, we got the first trip in, but then that was it. Between my family's brief sojourn in W. Va and her family's vacation, and then soccer tournaments and and then, diagnosis, chemo, blah blah blah....we never got our "last trip of the season in."

This past weekend, it was five women plus two evening visitors. The weather was wonderful. For the first time in forever, it neither rained nor snowed. Precipitation haunts our camping trips. It wasn't hellaciously hot. It wasn't overly windy. It. Was. Ideal.

I feel for the first time that I'm approaching that "new normal" the books and articles talk about. This was a normal activity. I didn't feel "bad" per se. While some people may not find camping relaxing, our approach is very relaxing, so I didn't so much notice the fatigue. I did go to bed "early" for a trip with Amy. About 3:00 a.m; however, I'd done nothing all day, so I really didn't feel exhausted. That hour is early for the two of us. In the past couple of years, we've had at least one night each camping weekend where we've seen the sky lighten with the morning sun.

All in all, it was a wonderful, relaxing 48 hours.

Ideal beginning to what I hope is a healing summer.

Friday, May 28, 2010

Happy Birthday to Me

Today was my birthday.

One week ago today, I got the best gift anyone could ever get. My onco gave me the "all clear."
At that time, I thought I'd want to really live it up today.

However, it just seemed more appropriate to focus on the good things in life, to look around and foster an attitude of gratitude. Everyday should be celebrated like a birthday. More of the mundane needs to be looked at like gifts.

So, for those of you not following along on facebook, here's a re-cap of some of the Great Birthday Gifts of the last 24 hours:

1) A wonderful experience with the local high school principal and assistant superintendent of curriculum regarding Aidan's plan to Credit Flex Geometry next year and credit for Algebra I, taken outside of school and without school supervision, this year.
2) A break through on the Couch to 5 K running program....after being stuck on week 7 for an eternity (OK, really only a couple of weeks, but each moment seemed like an eternity).
3) When I started the C25K program, my goal was to run 30 minutes by my birthday, and that sticking point put me behind schedule, yet I did successfully run 30 minutes today just because it was my goal and I wasn't going to let myself down.
4) Boy #1 proclaimed "Linguistics is fun" and is investigating that as a minor in college (which I think works damn well with Spanish and Philosophy).
5) My husband found out that his unemployment claim was approved (after having been denied). That was a huge relief.
6) My kids' last day of school was today. How awesome is that?!?!?
7) Fun dinner out (because unemployment was approved) with the family and an extra kid
8) Went garage saling with Amy, and although the sales all sucked...
9)...had an awesome hot chicken sandwich at the Odd Fellows Hall (no one can make hot chicken like Midwest United States Service Organizations raising funds for something or another)
10) There was a spectacular electrical storm tonight (hitting just as we decided we really shouldn't put off loading the van any longer....yes, we are cursed)...
11) The van is loaded for a grown girls weekend camping trip...
12) More birthday greetings than I can count
and finally
13) Every birthday from here on out is a gift itself and I'll never take one for granted again.

Thursday, May 27, 2010


When I was a kid, or at least as I remember it, the school year just ended. There might have been a special assembly or something, but I have no recollection of the end of the year activities dragging on and on like they do now. picnics, awards ceremonies, class picnics, field day, themed days (beach day, zany day, bob cat day...), grandparents/special friends days...oh, heck, I can't even keep track of them all. Of course, back in my day, we also didn't have high stakes testing, and whatever tests we did take in elementary school certainly weren't prefaced by test preparation, other than having everyone go to the bathroom and sharpen their pencils. We even took naps in kindergarten and played with toys in first grade. We got three recesses a day: morning, lunch, and afternoon. We walked home for lunch, or at least some of us did. We rode our bikes to school and didn't lock them up on the play ground. And they were still there when we left for the day. So, maybe we didn't need the long, drawn out end of the school year she-bang that exists today.

I have a vague memory of some sort of final exam schedule in high school. I'm not sure if it applied to all four grades or just juniors and seniors. So much of high school is now a blur. I have no recollection of being able to go in late and get out early just because we might not have had an exam at that time. Maybe that happened. I'd probably have chosen to hang out at school in lieu of going home, though, or hang out in the parking lot or something like that. So, maybe we did have the opportunity to have a "final exam day" like my one son had today....go in at 10 and come home at 1:00.

What I do remember about the last day of school from both elementary and high school is the great feeling of relief when that final bell rang. That explosion of energy that came upon me as I left the building. The locker detritus that fluttered like confetti in the hallways. That feeling of expectancy...the summer was there for the grabbing.

And no one dared assign us outside reading or projects in the summer time...or if they did, I have blocked that from my memory as well.

Today was my kids' last day of school for the year. I don't really get the feeling that they are experiencing that huge sense of relief that I remember from my youth (heck, I STILL get that feeling when I walk off campus for the last time each May). Of course, Nathan finished his more difficult, university classes in May and probably only attended 70% of the classes of his one course at the high school. His relief was palpable earlier this month, after he took his last university final. Aidan has to be feeling relieved, but he still has to finish up his Algebra course that he was doing at home. He rather lost momentum when it appeared he'd have to retake the course at the high school next year to get credit, but since that was worked out, he'll have to buckle down next week to finish before he leaves for Puerto Rico next month. Tynan, who has hated every single day of school this year, did just tell me that when the final bell rang today, he felt a sense of freedom and that the bell symbolized a "new beginning." If I felt relief, and I liked school, I imagine he felt beyond relief, because he really despises it....don't get me wrong, he doesn't despise school *work*. He despises **school**. He despises the arbitrary hierarchy, both real and perceived. He despises all of the waiting, the redundancies, the noise. He really finds school stressful and a huge exercise in self-control, which explains his lack of self-control at home many times.

Although it sort of seems that this school year ended with a fizzle rather than the bang I seem to remember, in large part due to the plethora of end of the year activities, my kids, all three of them, deserve huge awards for just surviving this year. They really were troopers.

Less than a month before this school year started, I got my official cancer diagnosis. Two weeks before school started, I met with my oncologist and got my "plan of action." The day before school started--or there abouts--I did my first round of chemo. Sometime between meeting with the oncologist and the start of school, I made the decision--I'd like to say it was a "hard decision" but it really wasn't--to send Tynan to school full time. Since there is virtually no school choice in BG, I didn't have to look for schools. He went to the school down the street from us, where he'd gone for kindy and part-time grade one. He was full time homeschooled for grade 3 (skipping grade two), so he just went back where he'd been before. No brainer, really. It's a small, intimate school. Small classes. High quality teachers. Very nurturing. But he hated nearly every day of being there. Yet, he hung tough. He rocked. And he stuck it out, without once getting into trouble for attitude or behavior. In fact, he was awarded Student of the Month at least three times.

Aidan, though, wow. He really deserves kudos. Initially, the plan was that he'd take ONE class at the high school, which would make him eligible to play soccer. The day before school was to start, he still didn't have a schedule. Late that afternoon, as we met with his guidance counsellor, it became clear to me that getting him to and from school was going to be an issue, and wham-o, he was enrolled nearly full time. It was at least full day enrollment. It was a long, hard year for him. But finally, in the last nine weeks, he pulled it all together and did well. Fortunately for him, the social side of school was easy and he is quite successful there. At one point, he was trying to explain why he wanted to switch study halls: "The only people I know in that study hall are seniors, and do you know how uncomfortable it is to be the only freshman hanging out at a table with all seniors?" He totally missed that he was probably the envy of all the other freshmen in the room....Right now, he plans to go back next year. He was accepted at another school, but since my husband lost his job a few weeks ago, and has no prospects on the horizon, we can't justify taking on the expense of tuition right now. And he's on the waiting list at a charter school, but with the success of Crystal Bowersox on American Idol, an alumna of this particular school, the list is long....

Although Tynan and Aidan deserve awards for toughing it out this past year, Nathan deserves an award for being most flexible. After my diagnosis, not only did he change his schedule at the university--dropping two classes to make himself more available to help out around the house and adjusting his schedule to be able to help with transporting Aidan--he also stepped right up with helping his younger brothers with homework, getting Tynan off to school when I had to work, and driving me to many of my appointments. This past year really has been a rite of passage for him. He's also handled the stress of this past year well. OK, so he got arrested for a snowball fight, but he didn't begin drinking or drugging. Given that he all too well understands the dire potential outcome of cancer, has a good understanding of the economy and our precarious position in it given his father's three job losses, my position at the university, and what all of that means to our family and his future, he handled the stress with grace and maturity.

All in all, my boys were troopers this past school year and are fully deserving of a summer of relaxation. I'm very proud of them.

Monday, May 24, 2010

Busy, Satisfying Weekend

This is going to be a boring entry...feel free to skip:)

I have a love-hate relationship with busy times. Compared to many families, we aren't busy at all. Compared to my childhood, we are crazy busy. At one point in my childhood, my days consisted of riding bikes, maybe doing swim lessons, and then hanging out at the pool until lunch time. Coming home for lunch. Then back to the pool until dinner. After supper, backyard kickball games, catching fire-flies, and more bike riding. Even in high school, I wasn't that busy. I participated in some of the plays, but avoided Drama Club and it's activities. I played a little rec league softball, but no school sponsored sports. I seem to remember spending a lot of time lying around, listening to music and talking to friends. Of course, I remember some other activities that are better off not discussed in a public blog my children have access to, but in general, I wasn't busy.

At least not as compared to the young people I know today.

This is the tail end of soccer season. This season, we are less "busy" than seasons of the past because Nathan isn't playing, nor are he and Aidan reffing. When all three boys played on travel teams, and two of them also reffed, and Nathan wasn't yet driving, we were busy. But that's not the case this year.

Because we knew Thursday through Saturday would be busy, we used Wednesday evening to have Tynan's celebratory Birthday Dinner. He chose Dairy Queen, complete with food and ice cream. So, Tynan, Aidan, Nathan, Patience, Louis and I walked to DQ. While there, Aidan remembered he had to attend the high school art show, so he and Louis left for that, while the rest of us finished ice cream and walked home.

Thursday, I got my all clear, and then in a sort of dumbstruck, happy, giddy mood, I went shopping for Aidan's summer wardrobe, if you consider two bathing suits and a few polo shirts a summer wardrobe. Came home, got to have a wonderful conversation on the phone with my wonderful sister-in-law, Anna. Did some celebrating my good news with my husband and older sons. When Tynan came home, we let him open presents (being the lame-o family we are, they weren't wrapped but they were buried under crap in the back end of the van....does that count?) and he very happily rode his new skateboard thingie and blasted away with his new nerf gun....until time for soccer, which we had to force him to go to. I'm not sure what happened, but Aidan ended up helping Nathan coach instead of going to his own practice, and then, as it turned out, Tynan's practice had been cancelled, but he got to hang with some friends and skateboard, so all was good.

Later that evening, Brendan joined us. It was his birthday as well, the big 18. I do know that at some point, he and Nathan were talking about how he could celebrate turning 18....he could buy tobacco products or porn. Tobacco products didn't really appeal to him and porn can be gotten for free on the internet, so I guess they decided instead to hit the streets with their long boards. I think that was a good decision. I'm glad they didn't decided to go tattoo shopping or join the military just because....I suggested he register to vote, but that wasn't celebratory enough.

Friday rolled around, rainy and overcast. The start of the local Relay for Life. Tynan also had a soccer game (they won). Aidan hung with me and Patience at the Relay. Nathan had to work. Then the Relay was delayed for heavy weather.

Saturday morning it was back to the Relay, where Nathan, Aidan, Patience and I walked until Nathan had to leave to coach. Poor Aidan had been up all night at a sleepover, but he hung tough. Tynan and Louis showed up briefly, but then had to leave for Tynan's game. Nathan came back to help us tear down after his game (his team lost), and then we all hustled over to catch the last 3/4 of Tynan's game (they won). Then hustled over to Aidan's last home game (they won), then home to set up for Tynan's birthday party (Louis had done the prep work of making cupcakes and several dozen pbj sandwiches).

At 3:30, we were descended upon by 15 ten year old boys and their nerf guns....OK, if my memory serves me correctly, it was 13 nine to ten year olds, my two older boys and one of their friends. After a rousing game of kickball, they had he nerf gun battle to end all battles, scarfed numerous sandwiches and...well, you get the picture. We had it at at local elementary school playground, and I do believe a good time was had by all.

Sunday was much more sedate. My mother-in-law and brother-in-law came over for lunch and patio sitting (our favorite good weather past time). Then I had to hustle Aidan into the netherworld of NW Ohio for yet another soccer game (they won). When I got home around 8 pm, i was done. But I still had to book Aidan's flights to Puerto Rico. I hate doing stuff like that. Really hate it. I always feel like there's a better deal out there somewhere and I missed it. I'm sure that's true, too. I'm also willing to pay more for convenience, and if a web site isn't intuitive, I'm less inclined to use it.

I had a beer or two, maybe three, and went to bed. I didn't get up to exercise this morning. I'm using "at the peak of my fatigue" as an excuse. But I'll go later. Now, Amy is picking me up here in a few minutes and we are off to do some shopping and exchanging of the swim suits I got for Aidan.

So, what was your weekend like?

Sunday, May 23, 2010

Go toward the light...

A few weeks ago, I said that I saw a light at the end of the tunnel. I was really hoping that that light wasn't a train or something like that.

To recap, I finished radiation the second week of May, and made it through alright. I developed some annoying burns the week after, but a well placed call (and being cranky) to the radiation nurses got me a prescription for some Silvadene creme which helped immensely. At this point, I have some peeling skin under my arm and some scabbed over blisters under my breast, none of which really bother me, so I'm guessing I'm calling the immediate physical side effects finished.

I've hit the peak of my fatigue from radiation, and sometime over the next few months it should start to improve. This explains why I'm so delayed in updating my blog. I can apparently string together 420 or fewer characters to update facebook, but much more than that has seemed overwhelming.

And for that I apologize.

I saw Dr. Mo, my onco, on Thursday, exactly 10 months to the day from being told that I most likely had fairly advanced breast cancer. That was the 20th of July, and the final testing results were told to me on the 25 of July. On May 20, the birthday of my 10 yr old son and the 16th birthday of my stillborn daughter, Dr. Mo pronounced me "cured."


I guess that light was really the sun and not a train headlight.

While no one can be sure what is going on on the molecular or cellular level, as far as Dr. Mo is concerned, I am officially cancer free. I've been chemo'd (x2), radiated, sliced and diced, and, in theory at least, those rogue, rapidly multiplying cells are all gone.

I still have to do 8 more rounds of herceptin to make sure that my cells don't decide to rapidly multiply. But that's not that big of a deal compared to chemo. And I have at least one reconstruction surgery ahead at some point. And then there are all the long term side effects which may or may not be permanent: neuropathy, cardiac toxicity, reduced heart function, possible lung damage, damage to other physiological systems, psychological and neurological changes.....

But the cancer is cured and for that I'm quite relieved.

Thursday, May 13, 2010

Send some good vibes our way... husband's unemployment claim was declined today.

He's appealing it. But it really needs to be approved.

Otherwise, we are, to put it bluntly, f*cked.

Tuesday, May 11, 2010

A good metaphor

My friend Janet posted this link the comments section of a previous blog entry. I think it is apt enough to repost it here.

This is why I'm doing the Relay for Life and, in September, the Race for the Cure.

Monday, May 10, 2010

No Radiation Today!

This morning was the first weekday morning in 6 weeks I didn't have to go to radiation because **I'm finished with radiation**.

I'm really happy it's over and that became much more clear today than on previous days. The way radiation works is very similar to a severe sunburn. You know how your sunburn gets worse as night progresses and then you wake up in the morning and think, "Wow, it didn't look that bad yesterday." Yeah, that's how radiation works. Last treatment was Thursday, and today I woke up and thought, "Wow, this really hurts."

I have a fairly nasty burn under my arm, in my arm pit. It reminds me of an oven burn, the kind you get when you reach into the oven and bump your arm on the pan or the side of the oven. The skin is dark, the skin is really dry and feels like it's going to crack, and it chafes whenever I move my arm. Overall, it's quite painful and when I put the recommended creme on it, it stings.

Then, this morning, I had an itch under my breast, rubbed it, felt a sting, and noticed that I'd ripped open a fargin' blister. Where the heck did that come from? Regardless, it wasn't alone. There's a whole chain of blisters.

It seemed like I was cruising through the whole radiation thing too easily.

Oh well, the treatments are over, and, in theory at least, these discomforts should begin to improve any day now. Hopefully, there will be no long term effects.

Relay For Life

I joined the local library's team for the local 2010 Relay for Life.

If you'd like to sponsor me, you can do so here.


Sunday, May 9, 2010

Happy Mother's Day

Ann Jarvis and Julia Ward Howe thought Mother's Day should be more than roses, chocolate and sweet cards, or as in my family running shoes, red wine, and cards that say "raising boys isn't for cowards."

This is for all mothers and others who think that we can make the world a better place.

Thursday, May 6, 2010

RIP Lynn Redgrave

Have I mentioned here that I don't want to die bald and I've chosen my pallbeareres should I need them in the near future?

Wednesday, May 5, 2010


More thoughts on this later, but....


My last radiation treatment is tomorrow morning at 10:15.

It's been a long fucking year. OK, 9 months and 10 days since my official diagnosis (but 9 months and 15 days since the beginning of the hell.....).

I'd be sitting here crying if it wouldn't freak out my kids, and they've been freaked out enough this year as it is.

I'm not even going to focus on what else is left to do. By 10:30 tomorrow, I'll officially be CANCER FREE.

Sunday, May 2, 2010

I really think that is a real light at the end of the tunnel...

Yes indeedy. I got some good news on Friday. As I was leaving radiation, one of the technicians commented that this coming Thursday was my last day. I was thinking it was Friday. So I made her double check. Yes, indeedy, I only have 4 days of radiation left! Thursday is my last radiation.

That is a huge milestone. Thursday will be the last active day of cancer treatment.

There are still 8 or 9 Herceptin infusions left (so, about 27 weeks), but compared to everything else, those are nothing. Even the Victory Center doesn't consider someone doing just Herceptin to be in "active treatment."

So far, radiation has been pretty easy. I've had minimal skin discomfort. Mostly itching, which so far has been easily dealt with. Just today I noticed some chafing on the back of my arm pit, where my arm rubs on the armholes of my shirts.

The biggest issue has been fatigue, and that gets worse by the day. It's normal for it to increase for as long as 6 weeks after radiation therapy ends and last for up to 12 months. In several places, I've read that sometimes people never fully recover from it, even years after radiation therapy has ended.

This simply is not an option. I will get my life back. I will feel better than I did before.

However, I'm so tired of feeling tired. Lately, I've been faking it pretty well, but I really am dragging. I've gone to soccer games, exercised, had dinner guests, and even done some housework, but really I'm dragging. And I can tell it's getting worse by the day. I still feel the cognitive functions of chemo, and fatigue is not a Good Thing to tack on to that. I really am forgetful, and organizing even the most simple things is quite the challenge. For instance, remembering to get frozen food out out and then to actually get it cooked frequently eludes me. Exercise really does seem to help. I suppose that is because exercising increases the oxygen in the blood. Ironically, the only time I don't feel like I'm dragging or tired is during and briefly after periods of exercise.

Because I so enjoyed those few weeks of feeling really good and because I'm so tired of feeling tired and yucky, I'm thinking of delaying my reconstructive surgery until after summer is over. Summer should be a time to feel good. I meet with my plastic surgeon in June and will discuss delaying it with her then.

As far as my skin goes, it's redder, I've developed more freckles, and it's dry. So far, no peeling, flaking, or burning. No blisters or sores, and the skin isn't tight or contracting. I'm hoping for very few permanent side effects and minimal complications.

Regardless, I really feel like there is a light at the end of the tunnel and it's getting bigger and brighter every day.

Saturday, May 1, 2010

Sometimes, We Just Have to Hand Over Control

As I mentioned earlier this week, my friend's son has been in critical condition due to poor choices on his part.

It's easy for all of us to believe that OUR decisions regarding our children will protect them, will make them "better" people, will save our families from the tragedies of other families.

Sadly, this simply isn't true.

Our children make their own decisions, influenced by us, their peers, events in their lives, society, as well as their genetic predispositions.

I love Katie. I know she has tried to do what she has thought is best for her children. Henry is not a bad boy. He's an addict.

There but for the grace of .....go any of us.