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::

It never leaves

My good friend, Heather, herself a cancer endurer, posted this to Facebook yesterday:

Cancer may leave your body, but it never leaves your life.

Truer words were never written. At least nothing else resonates with more truth to me right now.

If anything, I have a history of under-reacting to health issues. Yes, I am that mother. The one who made her son play soccer for several weeks with a broken ankle before I finally admitted that maybe, just maybe, he really was hurt. I'm also that mother whose kid had pneumonia, more than once, and I didn't really think he was all that sick. Earlier this fall, I broke my hand and it took me a week to even think I should have it looked at. Um, that was in September, and here we are, coming up to Christmas and I'm still dealing with the fall out from that injury.

Yet, today, less than three weeks after having my reconstruction surgery, I have a minor ache. I can't even call it a pain. It's just an ache in the area of one of my ribs, right in line with one of my incisions.

Logically, I've just done too much today. It's hard not to, since I have no real nerve endings with which to feel pain in the area of my surgery. When I had my c-section 18 years ago, I wasn't to pick up anything that weighed more than eight pounds other than my baby. And when I did, I felt it. I felt an uncomfortable tugging in my incision. After my mastectomy, I wasn't supposed to life anything heavier than a can of pop (my surgeon's words), and for weeks, I felt it if I did too much. There was that uncomfortable tugging, sometimes painful, but a reminder nonetheless.

However, with this surgery, there really hasn't been much pain. My skin is pretty numb from having nerves cut and removed with tissue during the mastectomy. I can hold an ice cube, for instance, one my chest and not feel the cold. So, when I over do it, I don't feel my incisions. I have one tiny area, maybe about 1/8 of an inch long at the very end of one incision that seems to have some nerve endings. The other day, I thought maybe I'd hurt myself or it was infected or something, until I realized that my incision should feel a little tender when I rub it with my finger.

I'm still sleeping on the couch to prevent myself from sleeping on my stomach. I don't know why. It just seems like I probably shouldn't do that.

I have this irrational--or not--fear that I'll do something...rip my internal stitches I guess, and my implants will migrate to someplace I'd rather not have them, like my abdominal cavity. The internet is not always a good thing, you know? I read about something similar...an implant falling...here. Of course, now I'm convinced that something similar will happen to me if I sleep on my side or my stomach or lift too much or or or or or...

Technically, I'm in the middle of my recovery period, and I have this ache. It's a tiny ache. I'm guessing it's from the bra I'm wearing today. Or that I lifted, pulled, pushed or otherwise over extended myself today or yesterday. I've been dealing with student portfolios, and no matter how much I try, I'm sure I'm lifting too much, even though I dragged my one son out of bed to help me get them to school the other day and had students carry them around campus for me. I cooked today for the first time since surgery. In an effort to spread out the work for some cooking projects I need to have done by Friday, I thought I'd break it up over the course of a few days, but I did get a little carried away today.

So, there is ample reason for a little ache. Here's how little the ache is. I don't feel it at all this instant. My injured hand hurts more while I type.

So, why am I convinced I have bone cancer?

Yeh, right, because the whole cancer thing never leaves, even if the cancer itself does.

Not too long ago, I did a 13 mile run. I had a weird pain in the front of my one ankle after that. I still feel it, but it's not a big deal. And then there's my broken hand. And now this rib thing. This past spring, when I first started running, my hip hurt. I've been x-rayed, probed, palpated...I'm nearly 50 years old. I've spent the last decade or more mostly sitting on my butt doing nothing very active. My body was assaulted with chemo and radiation. And there is no reason to expect that I won't have some aches and pains. The break in my hand wasn't even serious...just a small fracture. My entire weight fell on it. If something were seriously wrong, the break would have been worse (Yes, I've asked every doctor I've seen).

Yet, I'm convinced that I have bone cancer.

I could get a bone scan. But somehow the idea of radioactive stuff injected into my body, especially after all the radiation I've already received this year, freaks me out even more.

Have I mentioned that I freak out about leukemia, too? Yeh, every bruise makes me think I have leukemia.

And then there are the dreams about radiation poisoning...dreams where my hair and teeth fall out.

Yeh, it never leaves even when it is gone.

Stupid Cancer.

How do YOU want to die?

Of course, we've all had this conversation at one time or another. You know the one, "Would rather know the hour of your death or has it come as a surprise? Slow and lingering with time to make your peace or fast? Fire or ice?"

But that isn't what I mean today when I ask, "How do you want to die?"

I've been thinking a lot about Elizabeth Edwards this week. She knew years ago that her breast cancer was most likely going to be the cause of her death. Of course, she could have been hit by a bus or gotten pneumonia or been killed in a plane crash. However, when you are told that your cancer is "treatable but not curable" you can probably bank on it eventually killing you. At least when it is breast cancer that has metastasized to your bones and then your liver. Treatments--chemo and radiation--can only be used when one is strong enough to tolerate them. Since the treatments themselves are ravaging....well, some people endure a long time. Others not so long.


Yet, how do you want to die? Elizabeth Edwards seems to have done it the same way she lived, with grace and dignity. At least publically, at least as far as the press is presenting it. She's reported to have posted to Facebook a farewell message of sorts:

“I have been sustained throughout my life by three saving graces – my family, my
friends, and a faith in the power of resilience and hope. These graces have
carried me through difficult times and they have brought more joy to the good
times than I ever could have imagined. The days of our lives, for all of us, are
numbered. We know that.

It isn’t possible to put into words the love and
gratitude I feel to everyone who has and continues to support and inspire me
every day. To you I simply say: you know. With love, Elizabeth."

Ignoring stories of marital discord and harpy-ish behavior, because this entry isn't really about Elizabeth Edwards at all, those are pretty graceful words. It's even rumored she didn't write them Or that they were written a while ago and she was just waiting for the right moment to post them.

Whatever.

What would you post to Facebook just days before your death? Huh?

I'd like to think that I'd have the where with all to be as graceful. The reality, though, is that I'd be more likely to post something like "fuckedy fuck fuck fuck...this is so fucking unfair. Why me? Fuck, I'm pissed. Why isn't this happening to someone who deserves it?"

I imagine most of us die in the way we live, so my death will not be nearly as graceful. My life certainly isn't graceful.

If we die the way we live, I just might live forever because I'm the ultimate procrastinator. Here it is, 4:50 p.m. and I haven't gotten very far with dinner plans yet today.

I supposed this all means I need to make some changes in my daily life if I want to approach death with a right mind and right intentions.

I need to dwell on this some more. I don't want to dwell on death, but let's face it, dying is the only certainty in life. Maybe we should all think about it a little more.

How do YOU want to die?

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.

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.

Spring Break! part 1

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

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

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

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

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

And we've napped.

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

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

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

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

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

The more things change

...the more they change.

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

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

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

Then the whole cancer thing happened.

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

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

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

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

Um, no way.

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

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

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

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

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

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

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

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

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

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

Maybe it wasn't just a cold.