Back to School Freedom

There comes a time when you’re a blogger (or me.  Really it’s more likely if you’re anything like me, so let’s go with that analogy) that you end up running dry and sapped of creativity and end up staring blankly for hours when it comes time to write anything.  I have gone near two years with little to no postings, and I do apologize for that (to all five of you reading this, of course).   I need to rectify this.  Especially since coming online and seeing a notification from wordpress saying “Your blog stats are booming!” only to mouse over the stats to see that only 12 page views warranted this alert.

I should do something about that.

The fact is, when I sit down to write about my issues with cancer I tend to mull a bit too much.  How can this be  helpful?  Have I already written about this before?  Why is it so quiet in here?  What are my kids getting into that has them so quiet?  Did they go outside? I don’t remember sending them outside…

And so forth.

It’s not that I have a lack of things to say, but it generally boils down to me wondering, truly, if what I have to say really hasn’t been said before.  While the answer to that is an undeniable yes (as is the case with most creative endeavors), I can at least say that nobody else says it in my words and with my personal experiences.

But my life isn’t all about cancer.  I want to show people that there can and is life beyond a cancer diagnosis, despite what most social implications tell us.  In fact, I can say without blinking that most people I’ve known that have gone through cancer have survived.  This isn’t exactly an educated and highly studied statistic.  It’s my personal experience.  One that I’m happy to talk about.  However it’s not the only thing I want to talk about, and as per some of my previous posts I do have other things that make me unique.  Oddly tall, unabashed lifetime Girl Scout, artist, and, according to my mother, a chef.

I can see you laughing there behind your screen, but don’t worry, the chef part made me laugh, too.

While I don’t consider myself to be on par enough to go compete on shows like Master Chef or The Taste I do think that I do a relatively decent job at keeping my husband and kids happily fed.  My children, also, aren’t nearly as picky as others seem to be.  I cannot begin to tell you how many times that I’ve had employees in the checkout lane marvel at how my kids’ snacks vary from carrots to celery, how they’ll eat broccoli without batting an eye, and absolutely adore the peas my husband serves with his casseroles.  Now, I’m not going to peter off into a spiel about my kids amazingness — that would paint a horribly false picture and probably also get boring.  We all have faults and my kids are no exceptions.  But every mom has to have something to brag about now and then.

My daughter, on that note, went on strike at the tender age of one and a half when it came to eating anything green.  I am, admittedly, a bit warped in my solutions to things.  So when she began pushing her peas away and opting only to eat her cooked carrots and noodles, I decided to take action.  I purchased the colored pasta and only gave her the green stuff.  Rainbow colored goldfish crackers?  She got the green ones.  Mashed potatoes?  Green food coloring.  Do I need to go on?  My daughter was only given the option of green food (except for meat.  I didn’t want to try and figure out how to dye meat and …really.  Green meat.  Ew.)  for nearly six months before she decided that she’d had enough…and began to voluntarily eat her peas once more.

I’ll consider that a small notch on my belt of triumphant mommy moments.

Now that school has started up again (my house is quiet for a good reason.  I’m still not adjusted to this after summer.) I’ve decided to start experimenting around with cooking once more.  There have been frequent times when I’ve been asked for recipes, so here is where I will post them.  Written in a way that hopefully doesn’t bore you to tears.  (I’m looking at you, Betty Crocker.)

Does this mean I’ll be stopping writing about cancer?  Of course not.  My tall tales will still appear more sporadically, too.  I’m just adding in another part of my life to a blog that’s, well, about my life.  Hopefully this will prompt me to start writing once again, as I’ve begun to miss the overly obnoxious clacking of my outdated keyboard.   In any case, I hope you stick around (all five of you.  Or four.  There might be a slim chance of six.  I digress.) and see what I manage to pull out of nowhere just to give you something to read.

Cheers!

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It’s All Routine

For the last three to four months I’ve been starting and re-starting, erasing and saving this post.  Half the time I get a  paragraph in and I just walk away.  Writing, reading, memorizing, and altogether being creative lately has all but been sapped from my person until recently.  With how fleeting these moments seem to be for me, I feel it’s best to sit down, while I still have it, and write once more.

My house has been under a false sense of sanity for a while now to the casual observer.  Two kids, a semi-decent lawn, a house not completely derailed and messed, a dad who works, a mom who stays at home and looks healthy.  We smile in public, we pay our bills, and we do our best to keep ourselves informed in the world around us.  But I can tell you, right now, that what you see is only the tip of the iceberg.  Not to use cliché statements or anything but really, what you see of the iceberg is small compared to what’s beneath the surface.  A little lesson I’m sure the survivors of the Titanic could tell you in spades.

When you dig a little deeper, though, boy are things on the crazy side.

The short list of crazy?

• The axle on my car broke.
• A pipe burst in our back yard.
• My son was diagnosed with ADHD.
• My son keeps getting into fights at school.
• I just spent the last three months in radiation therapy.
• The roof keeps trying to leak.
• Found out that I’ll be starting chemotherapy soon, even though I’d hoped to avoid it again.

And now…for some expansion, because when you just list it out like that it really, really comes across as bad.

Car Chaos

So, last summer as I was driving to and from various doctor appointments (All part of my monthly routine, mind you.  These were just followup and checkups) I heard a few strange noises coming from under the hood.  Both the brake and the oil light came on together, giving me reason for alarm.  Searching through the manual just told me to replace the belt, checked under the hood…the belt was fine.  Attached. Didn’t seem off at all.  So I pulled onto the freeway and headed home. Turns out that shortly after, somewhere along I-5, I lost one of the pulleys from my engine.  I pity the driver who had to dodge the bouncing thing that was somewhere, somehow, ejected at seventy miles per hour.  This, of course, stopped my battery from charging.  Over the forty mile trek I watched my battery power slowly deplete and by the time I was backing into the garage all of the interior lights had gone out and the car sputtered to an uneasy stop. My husband came home, figured it out with some research, and after a bit of Google-fu did his own fix.

This seemed to be all right for a while. Until I was about halfway through Radiation this year.  It rattled. It squeaked.  And every time I turned the corner it sounded like somebody tossed a wrench in the engine just to watch it bounce around.  Taking a leap of faith I found a mechanic to look at it and it turned out that not only did my husband install the pulley wrong–but that my axle was grinding out its’ last few breaths of life.  Every corner turned was a protest of agony that could be heard five blocks away and sent me sinking down in the driver’s seat in shame.  Between my parents and my husband taking a day off, the mechanic had it to me the next day, fixed up and ready to go.  This alone wouldn’t have been too bad, but…

Backyard Flooding

The same day I’d been trying to figure out the axle, I came home to yet another surprise.  I stepped into the house, went to fill up my water bottle and noticed that the water pressure was insanely low.  I could hear water running in the pipes.  Checking frantically I could not find the source.  Finally I ran outside to see water bubbling up from the ground like a primitive drinking fountain.  Calls to the city, plumbers, and my husband led me to seeing dollars that I just didn’t have fly out the window.  After monetary help from both my parents and my husband’s parents and, of course, turning the water to the house off, we finally finagled a solution out.

Long story short?  The city I live in, last year, changed their water source.  It used to have a low pressure, flowing easily downhill.  When they changed, the direction in the pipes all shifted, having to add pressure to suddenly deliver water uphill. There was at least a little consolation knowing that my house was one of many that had to face pipes bursting in back yards.  Now if I can just hold my breath, cross my fingers and not asphyxiate myself in the process hopefully, just hopefully, the pipes in my house can handle the water now coming in from a brand new line in my back yard.

Parenting Challenges

I like to think that my own health offers my family enough challenges, but often I am reminded that there are no real limits to what can be thrown into the gears.  I’ve suspected for a while that my son might have hints of ADD, possibly even Autism.  This year, his first grade year in school, things seem to have boiled over.  He can’t keep his hands to himself.  He randomly would stand, walk around, drop to the floor, kick at his chair.  He has troubles verbalizing things, even if he does understand them.  I am constantly having to remind him to use his words.  Unfortunately it got to the point at school that he was becoming a danger to other children.

Now, before anybody assumes, I am going to point something out.  My son is amazing.  I could write an entire blog post gushing about how much my son has already gone through and triumphed and it still wouldn’t give you the best indication of his personality.  He’s joyful and curious, creative and full of ideas.  He loves to smile, to have fun, and is so very wonderful to his little sister.

In January he was diagnosed with ADHD after I finally managed to meet with a doctor from Doernbecher’s Children’s Hospital in Portland.  Even though he flaps his arms when he’s concentrating, opts to yell or grunt or make awkward noises instead of speaking, and will at times pace or run circles in the house so he can think (‘Dream dancing’, as he calls it), the doctors have dismissed the possibility of Autism.  Unfortunately, like so many people with experience with ADHD know, ADHD tends to not just come alone.

The medication did wonderful for him for a couple of months, almost five in total, but now it seems to be petering off and he’s resorting to old habits.  It may require a dosage change, but there may be other things going on.  OCD, Asbergers…these are just two of many possible things that have been put onto the table.  Not to mention that he’s watched his mother go through cancer three times in his short life…which I cannot imagine is easy on a child’s shoulders.  I don’t think he understands the possible gravity of my situation, but I’d be a fool to think that my poor health hasn’t had an effect on him.

Radiation Reality

Yes, they even give you a certificate when you finish. My daughter was there with me for every treatment, enjoying the waiting room and free access to PBS. I’m sure she’ll miss it more than I will.

And on that note…well, the good news is that I am done with radiation.  The small tumor between my esophagus and my bronchial tubes has been radiated up until the beginning of this month.  The side effects of pain in the area are mostly gone now, but I seem to have a cough that doesn’t want to leave me alone.  The dead tissue in my lungs often contracts, too, and I find myself struggling to breathe.  Chances are I might be coughing for the rest of my life and keeping an inhaler in reach for days that I just can’t get my lungs to fully expand on their own.

As I step further from radiation I’m getting my energy back, which is good because I was about as useful as a sloth for the longest time around here.  I’m walking more, I’m up and capable of doing laundry and dishes and cooking once more.  But Monday proved to me that I still can’t quite get through the grocery store without struggling.  Normally I can come home and help my husband unload the van and put things away.  When I walked in this time, however, all I could do was sit. This much is a general frustration on my end every time I go through some sort of extensive treatment.  Be it for surgery, chemotherapy or radiation none really prove to give me an energy boost.

Under One Roof

So, a year ago my roof, in the middle of the night, started to leak.  We patched it as best as we could, but by Summer of 2013 we were up there for months peeling off old shingles and putting new ones on with a fresh spread of tar paper.  This took most of our summer, and I was under the impression it was done.  It was a bit on the chaotic side,  however, when I came home only a week after the back yard and car issues to find my laundry room light full of water and spilling over onto the floor.  It took a few tries and testing and one hefty tarp, but my husband figured out where he’d missed a bit of roofing tar.

While it seems to be doing all right, I admittedly cringe a lot more during a heavy rainstorm–which spring has supplied us endlessly with so far.  It looks good, I think, and I’m hoping to paint the house to match  this summer.  Changing it from a chewed Trident cinnamon gum look to a nice navy blue will be a welcome look, I think.  Maybe it’ll stop the door-to-door salesfolk from coming up and making silly conversation with me:

“Hey there, we’re in the neighborhood fixing up a gal’s place over on Field.  We noticed that your roof is old and looking like it needs repair!”

“My roof…is brand new.”

“..r..really?”

“Yep. Just replaced it last Summer.”

Two of these in a row.  The second looked properly abashed, gave us his card and left.  The first, however, kept putting his foot in his mouth.

“Oh…w..it looks old.”

“It’s not.”

“R..right. So about your windows, looking to update those?”

“When we can afford to, but right now I’m about to go into chemotherapy so we’re saving up our funds.”

“Really? You don’t look like you have cancer.”

This received a long silence from me.

“That is…I mean, you have hair, which is neat. Lucky you!  My aunt lost hers during chemo.”

“I haven’t started chemotherapy yet.”

At this point he made a hasty departure.  Somehow I don’t think he felt he was going to get a sale.  The ‘No Solicitors” sign should have helped, but…some people are apparently illiterate.

Chemotherapy … again

And now it all boils down to this.  As I approach Summer and a few months of weather that will allow for house painting, swimming lessons, and the summer camp that I help run, I’m also facing an entirely different issue.  For the first time during summer I’ll be going through chemotherapy.  Four months of it.  Once a week for two weeks in a row, then one week off, then back two weeks, wash, rinse, repeat.  It won’t be near as much driving as radiation, but again, I will lose my hair.  I will be exhausted.  I will be a useless sloth once more.  But somehow I’m going to do it.  It’s not a matter of bravery, it’s a matter of …well…really, what other option do I have?  In my eyes there’s only one other and it isn’t an option.

I have until after my CT scan to get things done for camp—which has not been scheduled yet.  While I’d like to put it off as long as I can to get things done, I know that after I do a little spell check and re-read this for errors…I’m going to be on the phone trying to figure out what’s taking so long.

And then?  Well, at least I didn’t give away my scarves, eh?

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Holding Still

There’s always that lapse of time between diagnosis and treatment that is riddled with tests and multiple doctor appointments.  Over the last two weeks I think I’ve spent a vast majority of my time in my car driving to and from the various doctors offices.  To my list of specialists I’ve added a new radiation oncologist, who has, as of yesterday, had me fitted for a new pillow.  There’s a technical term out there, but it’s essentially a plastic bean bag pillow that they lay you on and suck all of the air out of so that it forms neatly to your back.  Line it up with my old radiation dots and you’ve got a pre-posed position suitable for every radiation treatment.  After doing a little fitting the official word is that my treatments will begin next Friday.  I’ll be continuing radiation treatments for six weeks and after that there’s still the possibility of chemotherapy on top of it.  Both my oncologist and I are a bit hesitant to jump into that just yet.

Radiation is going to be a bit different, from everything I’ve been told.  I will likely have that deep sore throat that will last for far too long once more.  My heart will be exposed, as will my spine, lungs, and esophagus.  There’s a whole list of things that could turn wrong, including the risk of secondary cancers from the radiation. (Hah!  Secondary.  I think I’m a bit beyond that, somewhere in the quaternary and quinary arena.)  My radiation oncologist seemed a bit surprised that, due to how the cancer is pressing on both my esophagus and my bronchial tract that I’m not coughing up blood.  I’m not sure what to think when I’m not having an expected symptom.  Am I not coughing hard enough to make the cancer cells hemorrhage? Should I be aiming for this?  Somehow…I think I’m going to count myself lucky in this case.

I live in the shadow of a volcano. This isn’t metaphorical for anything, I just..really like that volcano and this update was in dire need of a picture.

Amid all of this what do I do?  I live on.  My daughter will be registering for Kindergarten today with the same teacher that my son had.  I’m working on getting the Day Camp I help run planned and ready to run, and also trying to wrap up what commissions I have so that I’m not leaving those who’ve requested them out in the lurch.  It’s the day in and day out chaos that most people expect on some level or another.  I get by, press on, and enjoy every minute I can.  Really, what else should I do?

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Well, that happened.

Cancer has so many imprints of my shoe on it’s proverbial rear at this point, I may as well add another.

From the picture alone you can gather exactly what’s been going on in my absence from my journal.  Between taking care of my son, who is, in fact, ADHD and starting his own vast array of treatments and dealing with my side of the health spectrum, life has been nothing short of crazy.  Some things do get neglected in those situations and for that I apologize.

A few weeks after Christmas the entire family came down with a round of the worst head-cold known to the history of man.  Or at least to me.  As I watched my kids and my husband each get sick and get over their illnesses I noticed that one thing was a bit off.  My cough wasn’t getting better.  In fact, it was becoming incredibly difficult to breathe in through my right lung.  I could fill it.  But it took a lot more effort than it should have.  I didn’t do much, however, knowing that I had a CT scan scheduled for January.

Well, the CT came and went, only to show that I had a few inflamed lymph nodes.  Because of my history (I could almost trademark that statement, I hear it so often) they sent me in for another bronchoscopy a week ago to poke around.  Turns out there’s a bit of a cancerous return that’s poking into my airways–hence the difficulty breathing.  That’s right, lung cancer is back.

This time we’re not really looking at chemotherapy, for a first, and since it’s in the lymph nodes it’s not really something they can fully operate on.  So what’s on the table?

Radiation.

If you’ve been following my blog for any amount of time you’ll know that my lung cancer and breast cancer were caused by the radiation I went through ten years ago for Hodgkin’s Lymphoma.  I have my reservations, but really at this point it’s down to me having much less options due to just how much my body has gone through.  Four chemotherapies, one radiation, several surgeries, and two pregnancies can do a number on a body.  Even if they were spread out over fifteen years.  Ultimately, for me, I want a cure.  Everybody does.  That goes without question.  But if that’s not possible, I want to live as long as I can and still go kicking and screaming in the end.  It’s not just about me anymore, it’s about my children, my husband, my parents and his parents, all of my family and friends.  Even for the checker at Fred Meyer who loves to chat with me every time I get groceries.

Not to mention that I’ve been told explicitly by several people that I’m not allowed to die any time soon.  Can’t go disobeying orders now, can I?

So here is where I stand, waiting on a PET scan to make certain that this is all collected in one small area before I delve into radiation therapy.   I won’t sit here and start cackling about the prospect of possibly not losing my hair, though, since I went and drew up an entire comic on it last time…and still lost my hair.  Some day I won’t put my foot in my mouth, honest.  Either way, though, it stands to say that I’ll likely be dusting this blog off again and writing a bit more.

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A change in speed

Let me take a moment to clear away the cobwebs and the dust before I get started.  I began this blog up a little over a year ago as a way to express my own forms of help or advice or just sharing my story when it came to anything and everything cancer related.  It’s bled over a bit, turning into a lot of my stories not just of my experiences with cancer, but also my experiences in life.  Often times I’ve sat down, scratching my head, wondering what I would write about if I ever attempted an autobiography.  What would make it stand out as any sort of different from anybody else’s lives?  Well, I’ve got that whole cancer thing, which has now encompassed half of my time here on Earth.  I was a bit peculiar in elementary school…and I’m overly tall.

That just wouldn’t fill a book in my mind, since I’m horrible with over the top flowery details just to fill space.  Yet, that’s where I sat at a standstill.  My autobiography would oddly end at age thirty-one when all the interesting stuff stopped happening.  (And by that I mean cancer isn’t allowed to come back.  Really, if that’s all that’s interesting that happens to me, I can be done.  Really, really I can.)

Over the summer, however, as my children started blossoming into the most unique people I’ve ever met I began to realize that my life has a whole lot more to it than what I typically perceived it to have.

See, over the summer we’ve been dealing with a mother’s worst nightmare.  After going through so much in my life I never dreamed nor dared imagine that something would be even remotely off with my children.  It’s borderline unthinkable and, if fate asked my opinion, is not allowed.  But we can all likely write a few anecdotes on how horrible of a listener fate is.  It’d be nice, however, if fate kept her grubby mitts off my son.

It started with notes from school at the end of his Kindergarten year.  Hands on other people, pushing, yelling, flapping his arms, but mostly he won’t follow directions.  Academically he’s spot on, above average in some areas, but my little six-year-old, at the beginning of his first grade year, was rapidly becoming a social outcast.  This is something, as a mother, that is so very frustrating to see happen.  Not just because I know what a bright and kind-hearted kid my son can be.   Not because I know he knows better than to get physical with other kids.  But because he’s doing the exact same thing I did as a kid.  And what’s worse?  I don’t even know why I did it, so how am I supposed to get it through to him that what he’s doing isn’t O.K.?

What, exactly, is the problem we don’t have a pinpoint solution.  It’s been like pulling teeth to get him seen by a psychotherapist.  Autism, Asbergers, ADD, ADHD–all of those have been thrown around as possibilities.  On one hand I have people telling me that there’s something decidedly wrong with my son, on another hand I have people stating he’s simply acting like a boy and let boys be boys, another hand I have his doctor saying that he’s hesitant to give him a label because labels can hold him back but if we wait until third grade then maybe it’d be a good time to pinpoint his problem, and on another hand (that’s four hands, minus eight for an octopus so far) I have his teachers wanting to help but not being able to really do anything because he lacks that label so they don’t know how to approach him.  This has all been a major point of frustration for our family for the better part of two months now.  It took some pushing, but we finally had enough and got the doctor to budge on his diagnosis.  I can’t sit there and be so afraid of the stigma of a label that I don’t get anything done.  The label meant something worse when I was a kid.  ADD?  Well, throw some Ritalin at her and she’ll be fine!   The 80s were wonderful for that.  I cannot begin to count how many people I knew that were eternally stuck in a rut of Ritalin-induced depression and were borderline suicidal due to the lack of proper care.  It makes me very thankful for my parents not letting my teacher push me to that.  While it’s very likely that I’m ADD as well, albeit undiagnosed, I can at least say that I likely escaped over-medicating and somehow managed to figure a way to deal with my own personal ticks with age.

Teaching a six-year-old to deal with those same ticks, however, is a bit trickier.  I’m sitting here at a threshold of ‘how do we get him to deal with this’ and ‘how do I deal with this’ and feeling horribly unhelpful about the whole thing.  Luckily I only have another month, however, of trying to sort out my son’s ticks on my own.  Another month of criticizing to take and suggestions to listen to for how I could do things differently.  Then we’re finally in to see the developmental specialists with Doernbecher’s Children’s Hospital.  This may turn into a story of struggle, but as with most struggles in my life the hope is that ultimately the struggle is worth it and turns out for a positive in the end.  I don’t expect instant gratification, but if anything some sort of direction, because right now I feel like I’m going everywhere and nowhere at once.

 

Did I mention he likely inherited my insanity? Yeah. That much is pretty evident.

 

 

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