Slipe, Sliding Away...

Remember when I was freaking out, when I was afraid to sleep in my bed after my most recent surgery because I was afraid I'd roll onto my slide and one of my implants would slide out of place?

Such silly worries.

And that isn't what has happened at all, well not quite or exactly.  Yet, it amounts to the same thing.

I've had continuous pain on my right side, very reminiscent to PMS-y breast tenderness, but intense and shooting, and worse at night to the point that it disrupts my sleep.  That in itself was disturbing because it also was slightly reminiscent to the pain from my tumor.  On top of that, my new right breast is lower on my chest than the left one.  It's also softer.

My assumption was that the left had settled and the right, which is the side that I had radiated, hadn't quite yet.  But that didn't explain the pain on the right.  If anything, there should be pain on the left.

My anxiety was cranked up a notch when I called for an appointment with my surgeon and, after describing my symptoms and concerns, was given an appointment within a few days.  Not only that, the receptionist was willing to work around my schedule.  Very unusual in and of itself.

As it turns out, the pain is caused by an awkward settling of the right side coupled by some weird nerve regeneration/degeneration/healing/something....and I can take more pain killers or learn to live with it.  I'm basically going to have to learn to live with it.

As for the being lopsided part...the right side, being unradiated, is probably settling "normally" and the left side, having been zapped for 6.5 weeks, isn't.  The collagen is damaged so the skin and muscle don't stretch like they should; therefore, the implant isn't settling normally, resulting in the lopsided look.

The solution?  Raise my right side to match the left since the left isn't going anywhere.  But the right side already has the smallest "pocket" available to it.  It's squishier than the right because there is more space for it to spread out.

Since the pocket is already as small as it can be, how does the surgeon raise it?  here's where it gets disturbing.  The only way to raise the implant is to stitch it to my rib !!!!  Yes, that is worth four exclamation points.

I'm totally grossed out and disturbed by the idea of having something stitched to my rib.  And it needs to be done sooner rather than later.  The surgery itself is simple.  Dr. W. will go in through the incision that is already there and move things around and stitch the implant to my rib.  She said this was going to be ouchy.  When a doctor makes a point of saying that something will be painful, that's a pretty good indication that it is going to suck.  She said "pinchy and owie" for a while.

Yippee.  I can not find words to express how happy I am to be facing a fourth surgery since all this started.  Now I need to fix my syllabus so that I don't have to grade over Spring Break since it looks like I'll be sidelined.

As well, this puts a kink in my New Year's Goals...I never did get around to writing that blog entry, did I?  One was to run a 5k each month and another was to complete the Glass City Half Marathon and if I did well there, to consider the Chicago Rock-n-Roll half marathon.  I'll be missing March and April, so the Glass City run is out of the running.  Surgery at the beginning of Spring Break means nothing jarring for at least six weeks, or until the middle of April at the earliest.  Dr. W said it could be several months before anything jarring is comfortable.

Crapola.  This does not make me happy.  I won't even go into how much I hate general anesthesia and believe that it messes with my head for at least a month.  It certainly wreaks havoc with my sleep patterns.  I'm still not fully sleeping normally, when I sleep.  When I do sleep, rolling over or moving around is bound to wake me up anyway because of the pain on the right side.

There really is no silver lining to this.  I'm grateful, though, that this isn't life saving surgery, that I have the insurance to cover it, a job that allows for it to easily take place, and that it's simply a comfort issue as opposed to cutting more cancer out of my body.  I love my surgeon.  I love the medical facility.  I wasn't really expecting it.  But I can cope.  And I will.  I'm just not quite ready to be happy or chipper about it yet.

Tending to Everyday Basics

My chemo brain is pretty profound. Just dealing with the everyday basics of managing a family has become a real challenge. Therefore, I have to find a new way of doing what used to come easily and naturally. Dealing with with groceries and meals is the first order of business.

The planning and executing of meals is challenging in ways it has never been before. I don't think to make meals until too late in the day. Organizing and executing a frugal shopping trip is my undoing. It's the "connect the dots" part that is such a challenge. It's like I'm in a brain fog. I can open a cupboard, look in, see food items, and see no way that those ingredients can come together to make a dish. To complicate matters, I also am unable to recall what is in the fridge or freezer. Looking at the weekly sale fliers used to mean something. I could see what could become of sale and loss leader items. Not so much any more.

I can't really explain it any more clearly. It's almost like my head is stuffed with cotton balls. Nothing "clicks."

So, I have decided that I must simplify the shopping. I shall mostly shop at Aldi. Can't get lost or distracted there. Six aisles. They rarely change. No decisions as to what is the best buy. I can flesh out what I can't get at Aldi at some other store.

Since I struggle to plan meals, I think I'm going to go with meal types. I used to, just based on my whim, come up with meals for lunch and dinner (back in the days when people were home for lunch) and shop. Now I stare at a piece of paper and think, "I have no clue what to have on Monday, let alone on Tuesday and I can't think of anything to have....so how can I shop?"

Instead, I think if I were to know that I have to have a soup/stew meal, salad meal, casserole meal, etc...I should be able to look at sale fliers or the Aldi layout and figure out what to buy.

I hope.

So, what types of meals are out there? Here's what I've come up with off the top of my head today...what else can I toss into the rotation?

Soup/Stew
Sandwiches
Breakfast for Dinner
Pasta
Casserole
Pizza
Salad
Traditional (aka “grandma’s recipe box”)
“International” (aka pick an ethnicity)
Regional (aka pick a USA region)

An unfamiliar position...

So, here's a sad and unfamiliar situation for me:

Some friends and I have formed a little support group. Some call it "Strong Women" some (OK, me) call it "Crazy Cancer Club."

One of our members is dying.

She is leaving behind a husband and children, young children.

As we do so darn well here in the Midwest USA (or maybe it's a Great Lakes thing), the community is doing its best to tend to the needs of the family. Meals are being brought in. Cleaning is taken care of. Christmas is being tended to. Teachers have been met with.

It's so incredibly sad. Heartbreakingly so.

During Cancer Club meetings, we've talked about some really intimate stuff. It's one time we can laugh about the indignities we've experienced. Some of them can be quite amusing. Some, out right funny--much of that has to do with chemo brain; some, in a warped kind of way--much of that has to do with chemo brain, or did I already say that? It's one time we can talk about how precious it is to be able to poop when you need to. We can laugh about losing hair. We can express frustration about fearing that every twinge is a recurrence. It's one time where "it is what it is" can really be what it is because we all have gone through it or may confront it. Some of us have "curable" cancers. Some might be on chemo off and on for life. But this is the first time one of us has died.

And I just don't know what to do.

My love language, apparently, is food.

Another member of the club and I took dinner to the family last week. And I could not stop making food. I made a frozen meal for some later date. I made two soups. I made Magic Mineral Broth. I could have kept going.

I understand my friend, who isn't seeing people these days, enjoyed the Magic Mineral Broth.

I'm not a close friend. We've shared intimate moments. But we've never otherwise socialized.

I understand my friend is in a lot of pain.

I suppose I fear that I soon will end up similarly.

But meanwhile, I feel very awkward. At a loss for words.

I know this journey, this transition, is one that is very individual and one that we all must undertake.

Yet, I wish I knew what I could do to make this easier for my friend and her family. I feel so helpless.

And so sad.

So very, very sad.

What would you put in your letter?

I'm still dwelling on the Elizabeth Edwards story.

I feel like I've really slacked in the realm of parenting for the past year and a half. In fact, I think that I've probably really slacked for the past 10 years when it comes to my feral third son.

However, now, I'm dwelling on this letter that Elizabeth Edwards wrote for her children, in an attempt to provide for them the advice that she wouldn't be around to give later.

I have no idea what advice I'd give my kids. I'm probably not even giving them advice on important stuff now. Where to even begin?

Truthfully, on days like today and after weekends like the one we just had, it appears they take neither my advice nor my commands nor my suggestions nor my pleadings...and that also explains why the bathroom isn't clean and why, on a day school was cancelled for bad weather, that my one son had to get up at 8:00 a.m. to finish yesterday's chores...because he didn't take my advice.

Maybe ignoring my advice and my inability to provide such advice is a type of ostrich-like comfort. If it's not here, we can pretend we have all the time in the world to provide it, safely.

But I digress.

Maybe I should start such a letter. Maybe I should start such a letter here. Maybe I should do a series of entries called "Advice to my sons".

So, what would you be sure to put in your letter? What advice do you wish your mother had given you?

The Purpose of Life

Some of you have probably seen this on Facebook already, but if not, here is today's most inspirational video, which is saying a lot given that it's the Season for Giving and all that and so many charities are going out of their way to solicit funds.



This very much reminds me of the way my community has embraced my family, fed our bodies and our spirits, over the past 18 months.

I think I'll choose a month in 2011 and give this guy at least the equivalent of one week of our food budget and not replace that money. We'll live on what we have around for that week. Why choose a month and not do that now? Because, after all, it is December, and since this video seems to have gone viral, I'm sure money will be pouring in.

If you want to know more, you can go here.

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?

graphic video of today

OK, so this isn't ME or MY SURGEON in this video and my scars run vertically as opposed to horizontally, but this IS a video of the procedure I had done today.

Minus the altogether important port removal, of which I'm still in search of decent videos.

Adios, Portia!

Tomorrow, the "final" step on this whole sucky journey takes place....I'm having my reconstruction surgery. Even more exciting, my port will be removed at the same time. I am more excited about having my port removed than I am about getting my squishy boobs. I'm pretty much over breasts. If I had a different body type, I'm now certain I'd have not opted for any reconstruction. If I had this body type, I'd be quite comfortable without breasts. Alas, no matter how much I run, no matter how much I work out, that particular body type will never belong to me. I'm rather happy with my rock hard, totally unnatural "breast mounds" caused by the tissue expanders I have in right now. For those of you who don't know about tissue expanders, they are HARD. No movement, what's so ever. The rest of my body jiggles. Not my boobs. This makes lying on my stomach somewhat of a challenge, but it's still manageable. I could live with these for the rest of my life. Really, I could.



But this port....the port squicks me out, big time. The surgeons and doctors all say that it's one of the "best" they've seen, but it's nasty. There's this button right under my skin, about 2" below my collar bone. And then there's this tubing that runs under my skin, up toward my collar bone and disappears into my heart. Gross. Gross. Gross.



To top it off, I have some keloidal scarring along the tube, so there's a maroon line going up my chest. I care less about how it looks...by this point, most of my friends have some sort of scarring. But I simply can NOT stand how it feels. I know the word is over used, but it really is GROSS.



However, by tomorrow night, Portia the port will be gone. She has served me well, allowing 10 relatively pain free chemo infusions and 17 herceptin infusions. However, she shall not be missed.



And I'll have new boobs. Everyone assures me that I will be able to continue to live brassiere free after my surgery heals, and that had better be the reality I face. I do not miss wearing bras. Not. At. All.



And if I don't like these boobs, I can always get rid of them.

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.