Angry and Sighing

I wrote this in the midst of waiting to find out if I had metastatic cancer.  I saw that damn cancer Care Bear in the side bar on my Facebook page.

Living with, living through, living beyond cancer is the exact opposite of everything that bear evokes, except that in me, that bear evokes anger.  Whether it is breast cancer, or pancreatic cancer, or brain cancer, or small cell neuroendocrine cancer, or leukemia, or melanoma...cancer is anything but a cute Care Bear.

I lived through 48 hours of agony, waiting to find out if I was going to have to re-enter treatment and that is worth so much more than a cute cartoon bear.  I've watched friends die, witnessed their loved ones mourn, seen people irrevocably changed, watched my own children suffer fear and anger and sadness...none of which is captured in that damn Care Bear.

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And as for the sighing:

I first became aware of this phenomenon when our first baby was stillborn:  the overwhelming urge to just sit and sigh, along with a compelling urge to do nothing.  Not think.  Not move.  Not work.  Not tend to the basic needs of my family.  Nothing.

This wasn't quite so apparent when the second baby was stillborn, but I was busy chasing and tending to a toddler.  Or I don't remember it.  I do remember after both babies going out late at night, sitting on the wall in front of the house and sitting for the longest time most nights.  Doing nothing except wondering why no one else had noticed that the world had tilted off its axis, wondering how others could be going on about their normal business while my world had come to a screeching halt.

Those feelings eventually went away.  However, when my mother died, all those symptoms came back full force, along with insomnia, lack of focus, lethargy...a feeling of fragility.

And then they went away.

When the cancer train pulled into my station, I didn't have time to get this battered and beaten feeling, this fragile  feeling. No, I take that back.  The days and weeks between initial diagnosis and starting treatment were pretty horrible.  Yet, once there was a plan of action, the bullet train took off full speed, I was working full time, the only fragile feeling was the true physical frailness of going through chemo.

Today, though, I was a wreck.  It took me forever to fully awaken and actually be functional.  It took me even longer to function.  I was on the couch doing nothing until well after noon, regardless of all of the plans that I had.  I had to run out and get cold medicine for all of the kids here who have been felled by virus, and I simply could not choose.  I spent a full 30 minutes wandering aimlessly around Walgreens.  When I finally got to the gym, I lost 10 minutes just sitting in the parking lot.  Doing nothing.  Sitting.

By 5 p.m. I'd really done nothing other than work out.  Truly, all I'd managed over the course of the entire day was to work out.

I couldn't manage dinner.  I stood in front of the fridge, staring at the food.  Blank. I left the children to fend for themselves.

All evening, I've been sitting here, in my favorite spot on the couch, reading essays, watching incredibly stupid, mindless television.... embarrassingly stupid and mindless...and sighing.  And feeling fragile.

Emotionally fragile.

I don't like feeling emotionally fragile.  I feel wiped out.  Exhausted.  Scattered.  Overwhelmed.  Incapable.  Frozen.

::SIGH::

It took me much more time than it should have to grade a measly eight essays.  At this rate, I'll never accomplish all that I need to tomorrow, which includes most of what I needed to do today and didn't do.  At this point, I was supposed to have only one set of essays to grade tomorrow.  Yet here I sit, unable to grade, with three sets that need to be done tomorrow.  Plus the meals for the week, the shopping for which I should have done today.  Plus all of my laundry (thank goodness the kids and the man of the house do their own laundry).  Plus lunches for the week.  Plus a slew of things I know I'm forgetting.

::SIGH::

I can't even stop this blog entry so that I can attempt to sleep.  I'm not sleepy at all.  Tired, yes.  Fatigued, yes.  Sleepy, no.

I never expected to react this way.  It's not surprising.  I'm surprised.  Or I would be if I could generate that kind of emotion.  But it's not surprising.  I feel emotionally battered and bruised.  And it was only 48 hours of limbo.

::SIGH::

Reality Bites right now

I've been really frustrated by my limitations lately.

In general, I think I look pretty good, and that's what people have been telling me. All of my doctors think I'm doing really well. I'm in better physical condition than I have been in years.

Like a lot of survivors of any sort, I think I've reprioritized a lot in my life. It's not unusual for people who have survived car accidents, severe illnesses, house fires, the death of a loved one, or any number of traumatic incidents to "reprioritze" their lives. Or at least that is what I'm claiming.

In reality, though, it's easy to alter certain aspects of my life when I can't focus on more than one thing at a time, can't remember a lot of what I "need" to do, can't keep track of time, can't stay up late, can't multi-task, can't reason clearly, can't read anything intellectually challenging....Basically when I can't be who I used to be, that makes it really easy for me to "take time" for exercise. When I'm doing that, I don't think about what else I should be doing. It's the only time I feel focused.

Indeed, it is the only time I'm focused.

I do believe the longest, most severe lingering effect of cancer treatment has been to leave me with a raging, full blown case of adult attention deficit disorder.

I might even go so far as to use the adjective "debilitating."

I'm barely holding it together teaching this semester. Not only does it take me hours to accomplish the most basic of tasks, such as preparing lessons or evaluating essays, but I frequently forget to do what needs to be done. I've missed important deadlines, for instance the deadline for submitting my Family Medical Leave paperwork for the time I'll need to take off this semester. I can barely manage to plan meals and get groceries (OK, I'm incapable of doing this and we rarely have well rounded meals). I'm always forgetting something I need to do for work, such as grade papers or upload an assignment sheet, or even develop an assignment sheet. I've had huge chunks of missing information in assignments, and I've even managed to consistently forget to assign students basic work. Um, yes. I totally omitted teaching about transitional devices to my weak, first year writers. I'll cram that in next week.

I feel like I have the attention of a gold fish. Heck, since I have HUGE memory deficits, each day is like a new trip around the fish bowl.

When I add this to my vastly decreased processing speed, I've come to realize I'm vastly different than I was before.

In the last week or so, especially as I've been getting more and more frustrated while working with students--frustrations arising because I just can't help them troubleshoot the way I used to and I find myself getting confused while working with them--I realize that I'm not coping with these new realizations very well. Partly, I'm not coping because I'm tired of struggling to cope all the damn time. It's exhausting. Partly, I'm not coping because I'm no longer eating as well as I should be, for no reason other than I've simply stopped exerting the energy needed to plan food. For the first half of the semester, I was planning my (very simple) lunches in advance. Now, I'm just not. Partly, I'm not coping because I'm just not coping. I'm tired of coping.

And I have to admit, that tube of Pringles I just ate were damn good, even though I feel like crap right now.

Perhaps, along with ADHD, a lower IQ, and mental processing deficits, I'm depressed. Probably. I'll think about that. Later. If I remember. After I remember to go to my office and pick up the 60 essays dropped off there earlier today, which I'd forgotten about until just now. At 10:20 p.m. Hopefully, I'll remember to (a) exercise tomorrow morning, (b) pick up those papers, (c) grade them, (d) and to take Tynan to a movie tomorrow. If I'm lucky, I'll remember (e) that I even wrote this entry. Seriously, that's how bad it has gotten.

Early June 2010 update

Wow. I can't believe it is approaching mid-June already! Where has the time gone?

It's going to start blowing by now.

I leave for a week of scoring AP exams in Louisville in two days. Somehow, that week always seems to last 10 days, what with one day preparing to leave and two days decompressing after returning. It will be interesting to see how this year goes given my decrease in cognitive function, which seems to still be an issue with immediate recall and focus, and increase in fatigue, which doesn't seem to be decreasing at all and at times is quite debilitating.

The trip to L'ville comes right on the heels of our trip to Knoxville/Cumberland Gap. It would have been nice to have taken that particular trip for a happier reason. It almost seems wrong to have used the need to attend a funeral to take a short vacation, but it also seemed like the right thing to do.

The memorial service for Henry Granju was beautiful. The music was lovingly chosen. Dylan's "Forever Young" was very appropriate, and touching given that it was the lullaby I sang to my children and was also played at the memorial service for our babies. Hearing hundreds of voices sing "Let it Be" was also beautiful. Chris, Henry's father, wrote and delivered a very touching eulogy.

I was worried for a moment that the ground would open up when the Hubbell-Staeble clan went up for communion. It was nice to be back in an Episcopal Church. Genuflecting rocks my socks!

Later Saturday, after spending some time decompressing with Louis' cousin and her family, the kids and I loaded up and headed to the Cumberland Gap to camp. Given that we didn't really have a plan or know what we were getting into, it turned out rather well. We found a decent camp site, got set up, and set out for food. Little did we know that we chose the wrong direction on the highway, directly away from the nearest town with real eateries and options. Instead, we drove, and drove, and drove, and drove, and finally, a nice woman in a small gas station with what was called a "deli" said she'd make sandwiches for us. It appeared that nearly all gas stations had a "deli." They certainly use the term loosely: bologna sandwiches and chicken salad, all served up on either white bread or hamburger buns. For the vegetarians in our midst, the pickin's were mighty slim. Nathan ended up with American processed cheese food slices on a bun, and Patience opted for cold, undiluted Campbell's vegetable soup.

Sunday dawned waaaaay too early as far as Aidan and I were concerned, but Tynan, Patience, and Nathan went off for an early morning hike. Clearly these flat-landers, born and bred, were intrigued by the topography. We later all took a hike, stood in the middle of the Gap, etc. and then headed into a real town for lunch, during which it started to rain, so we then went to see a movie. Thank the goddess that matinees were $2. Marmaduke the movie was an ideal time for me to catch up on some sleep. When we came out, the sun was out, humidity was high, and we were happy to head back to the campground, where the kids all took another long hike and I lounged and read.

We managed a rip-roaring fire that night, turned in early, slept fairly well albeit a little damp. Nathan and Patience woke up and went running, which solidified in Patience's mind that she does NOT appreciate hills for much more than their beauty, then we packed up and got on the road.

It is so cool to have other drivers in the family. Nathan did most of the driving and I got to nap and read for most of the drive. I, of course, got the boring part, between Dayton and BG.

Camping after the funeral was a nice, healing experience. It was a trauma free trip, not counting the accelerated heart beats caused by the two Brown Recluse spiders we stumbled across and the Black Widow Spider that was on Nathan's leg. Other than that, the kids were very well behaved and enjoyable to be with. It was a nice way to kick off the summer and helped us all recover from the past year. It also gave Louis time at home, without us to get in his way, to scrub the carpets and work on grouting the shower stall....not exactly fun times, but necessary chores best done when others aren't around to bung them up.

One good thing about fatigue is that it enables one to sleep deeply and solidly in the middle of the woods, bear warnings be damned.

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."

Wow.

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.

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.

An indicator of fatigue

It is very common for those of us getting radiation treatments to experience fatigue. In fact, it is considered to be the most common side effect after redness of the skin. I became very well acquainted with fatigue near the end of my first 6 chemo treatments and during nearly all of my last 4 rounds.

My first inclination that I'm starting to experience radiation related fatigue is that I started saying, "I'm tired" a few days ago. I've also taken a couple mid-day naps this week. Then, there's the waking up before my alarm in the morning and being unable to go back to sleep, but also feeling unable to really move.

However, the biggest indicator has to have been today, as evidenced by the prolific number of posts I've had on facebook. When I haven't been in the car, at radiation, or walking at the community center, I'm right back in my recliner. I'd have the TV on, but I'm too tired to either get up and turn it on or find the remote. But hey, all three boys are home...one of them can do that for me.

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.