Rule Number One

GarageBand

The school I'm working for is just beginning its deployment of iPads for all students and staff.  I started the job two weeks ago; the iPads came in during my first week there.  When I asked what plans had been made for their deployment, I was told that nothing had been finalized.  So, I said the iPads would stay where they were, in their original boxes, until I could come up with a plan for deployment.

Now, I knew this stance wouldn't make me popular.  Of the initial shipment of devices, 12 were slated to be used by a group of students for their elective, GarageBand, the others are destined to be given to selected staff members.  Since the decision was mine, I decided I should be the one to tell Sr. Sue that the start of her GarageBand elective would be delayed by a week until I could figure out a deployment plan.  So, I stopped by her office to let her know.

Sr. Sue carries her mood on her face.  When I told her of the delay, and my well-thought out reasons for it, she said it was OK, but her whole body drooped.  Now, those of us who are cradle Catholics know that rule number one in a Catholic school is to "keep the Sisters happy".  I didn't even know I recalled the rule until I saw Sr. Sue's shoulders fall, and the sadness that overtook her whole being.

I decided then and there I'd have those kids miss as few chances to learn GarageBand as possible.  So, as I spent the next week drafting an acceptable use policy for the staff (my official first priority), I was also frantically trying to figure out the best way to get the 12 devices ready for Sr. Sue.

Fortunately, God also wanted Sr. Sue to be happy, for at a meeting the following Tuesday, a new group of software vendors came in.  We knew we liked their device management software, but the cost was out of reach for the school.  The vendors went back to the software company, and got them to lower their price 80% for us, which meant we could afford it..  We got the good news Wednesday, and on Friday morning, their crack tech team came out to show me how to install and use the software.  After a few glitches, we managed to get the ball rolling.  They had to leave after a couple of hours, but I stuck with it for the rest of the day.  By the time I left, I had 7 of the devices loaded and configured; I was able to leave the rest in the capable hands of my assistant at the school (who knows a LOT more about how things work there than I do). 

On my way out, I saw Sr. Sue, and was able to tell her the GarageBand iPads would be ready for Monday's class.  She was beaming as she continued her way down the hall.  I left shortly thereafter in a good mood.  Who knew that keeping the Sisters happy could have a trickle-down effect?

Click.

Spring!  Loose Park, Kansas City

I picked up my new car yesterday.  It's cute and gets great mileage and I think I'll really like it.

But, I have to admit, it wasn't as fun as buying new cars has been in the past.  Mostly because, as I was signing the paperwork, I heard a faint, but definite click.

It was the door closing on my camper van dream.

To paraphrase a post I saw on Facebook the other day, "When one door closes, another always opens - but the hallways can be a killer!"

I'm back in a world of rent and car payments.  Of work and getting up to the alarm.  **sigh**

As much as I know it's my new reality, there's a part of me still resistant to giving up on the dream I was living.  I was happy there, dammit!

I tell me it's not all bad.  And it's not.

In many ways, I got off lightly, given the givens.  No radiation, no chemo - and a low chance of remission.  Not zero, it's never zero with cancer, but it's low.  Knowing what others have gone and are going through, the loss of the girls seems a small price to pay.

I was given clearance to exercise again during my visit to the doctor on Friday.  I let me skip yesterday while my chest muscles settled down, then this morning, I got up and ran my katas.  They were a bit unsteady and slow - but my muscles are happy for the first time in weeks.  (Exercise is a tough habit to kick cold-turkey, and they had NOT been happy with me.)  I'd woken up in a kind of grumpy mood; I felt slow and sluggish and blah.  Once I'd finished the exercise and stretching, the anti-depressant properties had kicked in - I was much happier, and able to face the day.  ** happy sigh **

and even had fun.  Had a great delayed birthday lunch with a good friend; the weather was beautiful; the car really is fun to drive - it's like driving a go-cart!

Soon, I'm hoping to have the energy to look up and attend one of those cancer survivor support group meetings.  I've been coping with a lot of changes this year; perhaps I can pick up an idea or two;  ideas to help me find my way down the hallway to the open door I know is there somewhere.

Two of Me?

Loose Park, Kansas City

I feel as though there are two of me these days.

One of me is a go-getter.  Getting up for work, figuring out the new job, picking out a new car, going for walks when I can.

The other one of me is wandering in circles, dazed and confused, wondering, "what hit me, how did I get here, and what does the other guy look like?"

Getting back into the swing of work this past week was exhausting.  I am glad I was only working half-days - as it was, all I did was work, come home, and collapse.  That said, I think I will like it at the school.  My co-workers are nice, and bureaucracy is almost nil.  Actually, I am the bureaucracy - part of what I need to do there is add some sort of inventory control and procedures.  (I like it better when it's me adding the layer of work - I don't annoy me near as much as those people in the server control group at my last job did.  And if I ever find myself telling someone they're not allowed to do their job, I hope someone will do the merciful thing and fire me...)

And, I got to be a teacher-type.  Two of the students were engaging in a bit of PDA in the hallway when I walked by.  So, I slowed my walk, and looked at them; didn't say a word, just looked.  They saw me, and parted just a bit, so I continued to the stair landing, where I stopped and looked at them until they separated to go to their next classes.  On the outside, I was giving them my mom look, level one.  Inside, I was laughing.  What they were doing was far more innocent than the lip-locks I enjoyed in the hallways my senior year of high school.  But, of course, they didn't know that.

The other part of me is still wondering how my big adventure landed me just ten minutes from where I started, six months before I planned to be there.  What happened to running off with the rich guy that I met in Bali, ala Eat, Pray and Love?  I am struggling to find the meaning behind it all, and to sort out my new direction.

I believe the cancer part of this was not part of anyone's plan for me - it just happened.  On the other hand, the apartment, which is perfect for me, and the job, which will stretch my people skills and help me grow - these have more of the feel of Someone's Plan B.

So, what do I do with all of this?  I'm just now starting to try to sort it all out.

My chest is totally weirding me out these days.  I allow it to come into contact with as little as possible; I especially avoid carrying anything that needs to rest against my torso.  It doesn't hurt anymore, it just feels WEIRD.  The nerve endings are confused, and while there is sensation, it's like nothing I've ever felt before in my life.    eeewwwww! 

I got my first injection of pump-em-up yesterday afternoon.  My muscles didn't like it AT ALL.  They felt like a tight rubber band stretched across my chest, restricting my breathing, so I took a muscle relaxant (aka Valium) when I got home.  I think the drugs are what brought me my first really restful night's sleep since I got home from the hospital.  ("Don't worry, be happy" is their theme song.)  I woke this morning feeling almost normal.

That's one!

Aftermath...

Poor Taurus, July, 2011

A lot of people have asked me how I'm doing.  I know it seems like a simple question, but it's hard for me to answer.

Physically, I think I'm doing about as well as I can do.  I have about 4-6 hours of energy a day a month after the surgery.  The incisions are healing nicely; the underlying tissue is beginning to recover -- every day it feels a little less like someone spent time in there digging out splinters.

Emotionally, I really don't know where I am.

Going back to my car wreck analogy (I swore I'd give it up - I swear it's part of the reason I've been nervous about driving since my operation - but it's such a good one for me that I just keep going back to it.)....

The unmistakable sound of the crunch of car parts is fading to distant echoes; the wrench of the impact is over, the car has come to a complete stop.  I am still sitting in the driver's seat, a bit stunned by the unexpected turn of events.  I've figured out that all my parts still move; I know I can safely get out of the car and begin to assess the situation.  But I haven't yet left my seat; I don't really want to know the extent of the damage.

This is where my analogy begins to fall apart.  Replacement parts for a 1997 red Taurus are easy to find; any damage can be quickly repaired by our competent mechanic.  Give them a week; if the car wasn't totalled, they can get it back on the road.

My body parts, I'm still discovering, aren't swappable.  The surgeons do what they can, but their best efforts still leave scars.  And forget about getting back on the road in a week.  At best, it'll be late summer before I will be able to look at myself in the mirror and be able to recognize the figure looking back at me.  The curves will return, the sag will be gone (silver linings!) by the time the surgeons are finished.

But for now, I look - and then I look away before any emotion(s) can surface.  My chest looks violated; broken and torn.  Where once I had curves, I now have lumpy, bumpy sad bits of skin.  Like my emotions, they are largely numb on the surface; the cut nerve endings have not yet begun to try to reconnect, and may or may not over time, I am told.

Like my emotions, they are harder to describe underneath.  I wasn't prepared for this part - while I'm told the final implants will feel more like 'normal', the temporary implants feel hard; almost as if someone took a couple of plastic dessert plates, and inserted them under the skin.  (I prefer a Xena-Princess-Warrior-in-training image; in my mind, my plates are engraved bronze under there!)  There is feeling, the nerves in the underlying muscle are more-or-less intact, but it doesn't feel normal.

and it never will.  I need to define a new normal for me.

I haven't tried to hide beneath baggy shirts; that would make me feel as if I'd done something to be ashamed of.  So, I wear my normal clothes; hold my head up high, and face the world with a smile.

Even on the days, like today, when I am crying inside.

A Happy Birthday, Indeed!

Loose Park, Kansas City, March 2012

I can't say I've been thrilled each year to add one to the number of my years since I left my twenties, but this year is different.  Happy Birthday, to me!  Just about EVERYONE remembered my birthday this year.

It was an affirmation and a celebration.  Thank you all for remembering.  Thank you, God Who Is, for the stream of good news that came after the bad.  There have been times in my life where I doubted I was loved, doubted I was lovable.  If nothing else, the memory of these past few months should serve to erase that doubt forevermore.

I needed help a couple of weeks after the operation.  I was still unable to cook, my kids had to go back to their homes, and I was still unable to drive.  I sent out an e-mail on a Sunday afternoon asking for meals on wheels for the following week from those who had offered help since learning of my illness, and the schedule was filled within a couple of hours.  Whether homemade or carry-out, each evening's meal was chosen, prepared, loaded with with care and love, and delivered to my door in time to feed my hunger and warm my soul.


Cancer, yes.  But the highly treatable kind, not requiring me to go through the rigors of chemotherapy and radiation.  Operation, yes.  But I am healthy and my body shows no signs of rejecting the reconstruction implant as happens to some.  My body will recover, the scars will fade, and within a month, maybe two, I'll be able to freely move my arms through their full range of motion once again.  I am not out of the woods just yet, but I will make it.  I will carry the scars of these months for the rest of my days, but there will be more of those days thanks to early detection and good medical care.

So, yes!  Happy Birthday!  I am alive, and back on the road to health. On this St. Patrick's Day, that's something worth raising a glass to!

Here I Come!

Spring! Kansas City March 2012

Yesterday was my first day at a new job in almost 15 years.  Not that I can really count it as a first day; it was a retreat for the teachers and staff.  I'm glad I went - it was most enlightening to watch their interactions and begin to learn about how the 'play nicely in the sandbox' rules differ (and are the same as) the rules at my old job.

and today doesn't really count either, because I'm going to a local conference on how to integrate technology into the classroom this afternoon.

So, tomorrow will be the first day where I actually show up at the school and see my office and get a PC and a badge and keys and all those things that mark me as a member of the team.

Note to self:  Your energy has limits.  Don't push them two days in a row.  (I pushed them on Tuesday by going for a long walk, and then also trying to run errands.)  You WILL regret it.

Turns out it's a good thing I don't have to be anywhere until after noon today.   I did well all day yesterday; then hit the figurative brick wall as I was driving back and still about 20 minutes from home.  I turned up the radio, focused on my best defensive driving skills, and made it home in one piece.  Once safely inside the door, I promptly took a dose of my migraine drugs, put peaceful music on the stereo to calm my headache, laid back on the sofa - and then it was two hours later.

I went to bed early, and still feel like it's the morning after the night before.  I'm up, I'm moving, but I'm dragging and my energy levels are barely budging the meter.  I've had one cup of coffee; will have another just before I leave for the training session.  I don't think the training will cause any more drains on my energy - it will have none of the intensity and focus on the emotional energy of the people around me of yesterday's retreat.  Still, I'm glad I have no plans for this evening...

Ready or not...

Spring!  Kansas City, 2012

Here I come.

I start work tomorrow.  I'll do half-days for the first week and a bit, then see how I feel.  If I'm ready, I'll jump to full time, if not, I'll probably ease in for the next week by working six hours a day.  (It's still another two weeks before they will call me officially healed, assuming no setbacks - I can't even THINK about real exercise until then.  and I get grumpy when I don't exercise...)

My head and heart are ready to start.  When I left the interview in January, the school president had infected me with her enthusiasm; I was ready to join the team and start right away!  Then, I got distracted by this other mess.

Since I can't be on the road in the camper van anyhow, I might as well start working.  (I can't be on the road because I'll need to see a doctor about once every two weeks between now and the end of July to complete the reconstruction.)  It's a desk job; not physically demanding.  It'll keep me from getting bored, which is good, because when I get bored I tend to overextend myself and then I get REALLY tired.  And I don't think it'll take too long to get re-infected with enthusiasm for the job.  From all I've heard it's a good fit for the skills I have - and will quickly have me developing a whole new set.  (I'm not naive enough to think that many years of corporate work automatically transfers into knowing squat about how information technology works in a school setting.)

My gut, it's not so sure about this.  It LIKES not having to set an alarm every morning, and waking up only when I'm darned well good and ready to go.  And it's not convinced I'm not going back to my cube at AT&T.

But. I don't think it'll take too long to convince it I've entered a new world.  For example, I can't recall ever having a retreat day at the convent motherhouse for the staff and teachers in my old job.  And, there are a lot of volunteers that help keep the school running.  There ain't a single body there at AT&T that I can think of showing up a day or two a week to work without pay just because they believe in the cause.

Wish me luck...

Car: Check

only mine has a moonroof and a black top

OK, I finally got down to it, and bought myself a car.

As is often the case with me, I had a hard time making the decision until I figured out the underlying reason for the procrastination.

You see, it goes something like this (those raised in the "God's gonna getcha for that" theory of religion will find this to make more sense; I expect some others will be left scratching their heads in puzzlement):

I quit a perfectly good job to go out and have fun.  My cancer was God's way of punishing me for having fun and worrying only about me instead of following convention and working until a proper retirement age.  Thus, to get back in God's good graces and to avoid further punishment, I was to go back to following the rules.  No more of this goofing around trying to get in touch with my teenaged-self touchy-feely stuff.  No more buying and doing fun stuff just because it's fun.  Get back to serious cars that don't cause attention and will get you around safely in winter.  Get back to work - or face continued unpleasant consequences.

I won't bore you with the various sources of the childhood experiences which led to such a conclusion.  But I will tell you, once I realized what was running around in my subconscious, I put an immediate stop to that nonsense.

I don't believe God is anti-fun.  I don't believe God put us here to mindlessly work until we absolutely cannot work any more.  And I don't believe God punishes people for following their dreams.

Instead of buying the practical, reliable small SUV I'd been seriously considering, I bought a car that will make me smile.  (I need all the smiles in my life I can get these days.)  It's a new Mini Cooper Clubman S.  It's red with a black roof and has a moonroof - not quite as much fun as a convertible, but this way I do have enough cargo space to fit luggage for two to Minnesota; I figured it was a good compromise.  I'll pick it up late next week.

Next Steps...

Naked Ladies, Spring 2011

I'm better enough now that my mind has moved on.  To things important, like reading up on the history of the Cristo Rey schools, where I'll be starting work next Wednesday.  To things trivial, like the fact I'd best get myself outside with my camera - I'm having to reach further back into the dustbin for photos.

I am rapidly feeling better.  There are a few lingering issues from the surgery and the drain tubes, but they should be pretty much gone by the time I report to work next week.   I do plan to take it a bit easy - the recommended time off after surgery like mine is six weeks, not four, so I hope to be able to work half-days the first week and a bit I'm there.  Not only will I regain my energy more quickly that way, it might limit the culture shock just a bit.

I know I'll have a lot to learn.  Just because I spent 27 years in business doesn't mean I'm an expert on the best way to integrate telecom into an educational setting.  But I think I'll learn quickly.  When I'm not putting me into a tizzy worrying about going back to work, I rather like the idea.  I know this job will bring me a whole new set of challenges - and it'll be a long time before I get to the point where I might even consider being bored with them.

I've been a bit down these past few days.  For several weeks, the focus was on getting to and through the surgery and finding out what was to follow.  Now, I know what is to follow, and it's all pretty long-term stuff.  Years of hormone treatment.  Months to rebuild my profile.  Three more weeks before I'm allowed to do any vigorous exercise.  The scary part is over - at least for now, I hope forever.  And while I can't say I miss the adrenaline rush, it does bring its own sense of purpose and urgency - and does take its toll on a body.  I'm guessing, given the givens of the past few months, my reserve supply is a bit low and that's part of the reason I'm down. 

And, I've come to realize, I need a whole new set of goals.  Now that I can't have what I want, and am beginning to come to terms with my change of direction (OK, I'm still pouting just a bit...), I need to figure out another set of goals.  As I've always told my children, "it's important to have goals.  That way you know what you're deviating from."  (Proper grammar has not always been on the top of the goal list...)

New goals.  That's going to take a bit of thinking.  At least I'm off the pain meds now.   The goals will probably be a bit more boring this way - but also a bit more realistic...

And the Answer Is....

Horses,  Annandale, MN  2010

The doctor says the DNA of my tumor says the benefits of doing chemotherapy are just about equal to the risks caused by the chemotherapy drugs.  So, no chemo for me.  And, since I had a bilateral mastectomy, no radiation treatment, either.

Hormone therapy, yes.  Most women kind of have to guess when they started menopause; not me.  I'll have an exact date - 3/6/12.  Since my cancer fed on estrogen and/or progesterone, the idea is to starve any cells out that may be inclined to be develop.  (Since my lymph nodes were clear, they're pretty darn sure they've gotten all the cells that had existed before surgery.)  I'll be taking Tamoxifen, which blocks your body from producing those two hormones for the next five years (or something like that).  One of the side effects of the drugs is insto-menopause.  After talking with me about it for a few minutes, the doctor advised I not be allowed near firearms until I've been taking the drugs for a bit, and have settled in to whatever side effects I'm going to experience.

I'm thrilled at the news, of course, but it also scares me.  It's not a rational thing.  It goes more like:  Mom had cancer and Mom didn't have chemo right away and then the cancer came back and then Mom died.

Rationally, I do not have my mother's cancer.   There was no such thing as mammaprinting back in her day.  (That's the part where they look at the DNA of my cancer, compare it to that of cancers found in other people, and decide the most effective method of treatment.)  Mine had not spread to my lymph nodes, and the bilateral mastectomy guarantees it cannot come back in the other breast.  (The analysis of the left breast tissue showed that removing the 'innocent' breast was a wise decision - there were abnormal cell growth areas there that were likely to become precancerous if left alone.)

So, fear, begone!

Asmodeus - you are toast.  dead meat.  You are banished to the farthest reaches of the deserts of Northern Egypt, and I have legions of protectors to guard against your return.  You have no more power to hurt me.  You are gone from my life.  Good riddance.

I'll keep the rest of you posted on how this next treatment step goes.  Rumor says the effects of the hormonal drugs vary widely...  And no, I don't have any firearms.

Who'd'a Thunk It?

Arizona Desert Highlands

You know, if I had given it just a little thought - perhaps half a second's worth, I'd have realized that if one inserts a couple of drainage tubes under the skin, and leaves them there for, say, sixteen days, and then yanks them out - the nerves surrounding where those tubes had been might just be a little bit irritated.  A little.

It wasn't enough to send me back to full doses of the pain meds, but it certainly caught my attention.

That minor detail aside, I'm feeling MUCH better with the tubes out.  The remaining feeling is rather odd.  It feels like I have a band of something wrapped around my chest.  Put it this way; if I was going through airport security, I'd be worried about being pulled out of line for smuggling cocaine in that band.  The mirror doesn't reflect the feeling - thank goodness!

I haven't yet decided what I think when I look in the mirror.  It's certainly different.  But, I'm in a stubborn mode these days, and refuse to wear big floppy shirts just to disguise that I'm missing parts that were there just a few short weeks ago.  People look, but that's OK - they're curious looks, not hostile ones.  And, unfortunately, it's not as if disguising they're not there will bring them back.

My dreams these past few nights have been about having to give up my babies - I wake in tears.  (Doesn't take a degree in psychology to figure out the meaning behind those dreams.)  When I waken, I remind myself that keeping them was NOT one of the options.  'Tis better to have them lost than to lose life entirely.  So, I bring up some memories of the real baby in my life - rumor has it that she's just days away from actually being able to crawl - say goodbye to that part of me once again, and let the tears fall until they dry on their own.  I've come to believe it's important to allow oneself to mourn; to say good-bye, and good-bye again as needed.

As an aside:  There is something more than ironic in the timing of my fight with cancer.  One of the reasons I went on the camper van trip was to try to get in touch with some of the parts of life I missed as a teenager,  because instead of getting to be a teenager, I was being a caregiver for my mother, who had cancer.  The journey to get in touch with those elusive emotions was interrupted by, as you know, my own bout with the disease.  Maybe there are some things I'm just not supposed to know about myself. ???

I'm a bit nervous about my visit with the oncologist later this morning.  I don't think it's a matter of if, but when and how much chemo I'll be getting.  I'll let you all know soon what the answer is...

Pleasantly mellow...

Sometimes, the nurses in busy doctor's offices are sympathetic to people who have important questions that aren't true emergencies.

Suaguaro National Park, Tucson, AZ

Sometimes, they'll take time to give you their e-mail address so they can cover for a colleague who's on vacation for a few days, and track down the doctor to get the answer to a question that isn't so important to anyone but the person asking the question.

Sometimes.  Today was one of those times.

The drainage from my tubes had slowed enough that they could most likely come out - but they couldn't come out without permission from the doctor, and I'd been reaching the doctor via his most competent nurse - who happens to be on vacation until Tuesday.  Which meant I'd have to live with the irritation through another weekend.

I called the office, got hold of a young girl who transferred me to Mary, who took the time to track down the doctor, who said, "Yes, the tubes can come out."

I got hold of my local doctor friend, who came over right after her work was complete, and took the d*mn things out for me.  It hurt for about ten seconds when she did it.

I can't describe how good it feels to be pain-free for the first time in over two weeks.  (The fact she had me take a full dose of my happy-pain pills just before she did the procedure probably helps just a bit, but hey - if you can get away with it...)

I can take a deep breath.  I can reach overhead.  I will be able to sleep on my side. Tears keep leaking from the corners of my eyes - it feels so good to be able to finally begin to heal.  Hallelujah!

More Waiting...

Rockhound State Park, New Mexico

Have I mentioned I'm not very good at waiting?

When I had my surgery two weeks ago, they told me the drains would be in for two weeks, or until the fluid amount being drained fell to levels my body could safely absorb.

Being the optimist I am, I figured two weeks sounded about right, and made plans to have someone here to help me change dressings for those first two weeks after surgery.

Someone forgot to tell my body about my plans.  It's been two weeks and TWO WHOLE DAYS, and the fluid levels are still too high to take the drains out.  And now it's Thursday night.  Since the medical establishment does not consider the removal of drainage tubes high on their emergency list, that means I will need to live with them until Monday.  That's THREE MORE WHOLE DAYS, not that I'm counting.  (Based on the rates the fluid levels are falling, it's pretty safe for me to assume I can get rid of them by Monday.  Thank goodness.)

The dang things weren't so bad at first.  I hurt so bad all over that I hardly noticed their presence.  Things got gradually better last week, and while they weren't my favorite part of life, they didn't bother me too much.  Then, yesterday, I had an unfortunate incident that strained the muscles the drains are threaded through, at which point every nerve ending along the length of the things went into high alert.  Coupled with that, my overall pain level has been dropping, so I've not been taking near as many of the prescribed painkillers as I'd originally needed.

The combination has me whining big time.  For the most part, I'm feeling much better - almost back to normal unless I happen to glance down at my chest.  (But that's just a psychological jolt - those wounds have almost no pain related to them.)  The drains hurt all the time - but it's a low-level hurt.  The kind you think you're ignoring just fine until you realize you're becoming as grumpy as a guy whose coveted  football game has just been preempted by storm warnings from a developing system in North Dakota.

The good news is that I have plenty of engagements to distract me over the next few days.  I'm thinking of warning everyone who will be around more than 30 minutes that they may want to take my mood with a large grain of salt. 

Mostly, I'm just tired of this.   Already.  and the journey's just barely begun.  The experience has given me real empathy for those who deal with chronic pain- and a left me with a great deal of admiration for those who manage to do it cheerfully.  They have a strength of spirit I do not.