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.

13.12

That's how many miles I ran-walked today.

It took me nearly all afternoon, but I really only walked about 3-3.5 miles total.

The rest was my version of running.

I need a tshirt or jacket that says, "I'm not really a slow runner. I'm auditioning for Bay Watch."

I'm tired and achy right now.

Cold Headed Woman

No, not hard headed woman nor a soft hearted man, but a cold headed woman.

Something I've noticed since the weather has started to change from summer to fall is that I hate, hate, hate cold air on my head.

That seemed logical last winter, when I had no hair. In fact, kudos to bald people everywhere who live with that day in and day out, especially here in breezy NW Ohio.

However, it still bothers me. Chills me. Cold on my head never used to bother me. I despised wearing hats and tried to avoid doing so during the winter months. Yet now, the slightest breeze upon my head sends a chill down my spine and me looking for head covering.

Theoretically, I should be noticing less cold air in my head. After all, my hair is curlier and coarser than it was before. Therefore, if my general science knowledge is accurate, it should provide more insulation than my "old" hair. Plus, it's short and I wear it curly. I'd guess it is much more like sheep wool than ever before. Or a poodle's hair. And we all know that design is ideal for its insulating factors.

Yet, why am I miserable with the slightest breeze on my head. I frequently wish for a hood when I'm teaching. Right now, I'd wear a toque sitting at my kitchen table if I weren't so lazy that going to find one would be off putting. Perhaps I'm conserving my meagre energy supplies to keep hypothermia at bay.

::shrug::

Regardless, I'm cold. And I don't like it.

Henry's Story Told

Wednesday night, 7pm EST: please plan to watch this important half hour documentary about my friend Katie's son and his battle with drug addiction. You can watch online at WBIR.com.

Last Herceptin

Today, 15 months to the day of my official diagnosis (that is, the day my pathology came back), I will sit for my last herceptin infusion. Hopefully, my last ever. However, upon contemplation, if I could continue herceptin in an effort to prevent recurrence, I would. If I do have a recurrence, I'll have to have herceptin for the rest of my life, or as long as my heart can tolerate it. It is highly cardio-toxic.

In fact, my last echo-cardiogram indicated a 10% decrease in heart function; however, unlike MUGA scans (which involve the injection of radioactive dyes and freak me out) the "reading" of an echo-cardiogram varies from person to person, so a 10% decrease could be due to interpretation, which is exactly what my onco chalked the decrease up to. The ejection fraction was still within normal range, regardless, and I had run 5 miles the day before....so no one is worried about my heart.

But isn't that a mixed bag: if I have a recurrences, I'll have to have herceptin for the rest of my life, unless it causes enough heart damage that I'll have to stop it. Heart damage can kill...cancer can kill...sucks all the way around, I guess.

Rumor has it there is a herceptin vaccine in stage three trials right now. I'd be first in line, I think, if it were available for me.

Of course, there are "unknown long term effects" with which to be concerned. After all, I think herceptin itself has only been available like I've been using it since 2006 and only since 1998 for metastatic breast cancer...

Anyway, in a few minutes, I'll leave for my last infusion, hopefully forever.

Meanwhile, I'm just about to need to get my hair cut and styled. My wonderful sister-in-law did my first trim a few weeks ago, so that it is all the same length...about 1.5". It's much thicker than it was before. It's much, much curlier. I understand that I have what is known as a "chemo-perm". I'm trying to enjoy it, and I rather hope the curls stay. Some people find they do; others find they don't. Meanwhile, I've decided to keep my hair short. Now, I just need to find a local stylist who can make it do what I want it to do. Oh, and the appropriate "product" to make it conform to my every desire and have a texture that I approve of. Not too much to ask for. Probably impossible.

I've continued my quest for physical fitness. Some might call it an obsession. My one child certainly thinks it takes up too much of my time. Of course, being the whiniest child in the family, I take his complaints with a grain of salt. He'd never be happy. It has been a change for them though...me working days and then taking exercise classes and/or working out in the evenings. At one point, I might have cared more than I do now. Now, whatever. In fact, now, I regret the years I spent sublimating my needs to theirs, and more so, using that as an excuse to avoid dealing with my own issues. Yes, indeed, I think this is a common problem of many women, mothers especially, especially mothers in my "circle" of dedicated breastfeeders and homeschoolers. And now, looking in from the outside, I see many women who have put themselves in the position of being regularly taken advantage of by their families because of this. And I see many women who use their husbands, children, and "busyness" as an excuse for ignoring their physical (and perhaps mental) health. But all of this is material for another entry on another day.

Back to my own quest for fitness. I ran a little over 8 miles yesterday. I didn't do it quite nonstop. Yet, when I did stop, it was to stretch and deal with tight muscles, not to rest. I understand "runners" do this all the time. I'm not racing. I'm completing. I have one more "breast cancer" hurdle to accomplish this year, and that's my reconstruction surgery on November 19th. To psych myself up for that, my plan is to run the equivalent of a half marathon the weekend prior. I can't find a race nearby, and I'll be way too busy dealing with grading, planning for being out of the classroom, and generally getting ready for surgery to travel to a sanctioned event, so my plan is to simply run 13.1 miles on either that Saturday or Sunday on my own. I feel sure I can do it.

That is all well and good. In general, I feel good. I've learned to cope with the constant fatigue, which is still lingering from radiation. Some say it never goes away. My biggest challenge, the one I find most frustrating, the one that is most fear inducing, the worst perhaps permanent side effect of all of this, though, the one thing that I'm NOT doing well dealing with, is chemo-brain. I'll write more about this later, but suffice it to say, it is real, it's not going away or improving, and it has had a HUGE negative impact on my ability to live life and to function at my job. Fortunately, it now has a more professional sounding name and has been recognized by experts. Meanwhile, I am having a hard time coming to grips with, in essence, learning to accept that I'm basically brain damaged and not nearly as smart and capable as I was one year ago.

However, now I must jump in the van, drive to Toledo, and get my last infusion. I shall then celebrate by taking Tynan out to lunch and then, if the weather holds, we are going to go on a fun bike ride in one of the metroparks.

Brief Update mid-October

So...wow...it's been so long since I've written anything here. However, this is the last weekend of the semester that I won't have a stack of essays to comment on. That means I'm giving a fair warning that this weekend, I shall endeavor to do my bestest to complete and post those posts that are partially finished and to finally compose the posts that have never made it out of my head.

One physical update: I met with the lymphedema occupational therapist again last week and my left are isn no larger than it has ever been...maybe somewhat smaller. I'd been trialing not wearing my sleeve except when exercising, and it seems that, at least for now, I'm good to go. Lymphedema can show up at any time, but at least for now, I'm good. I still wear my sleeves when I exercise, as should anyone who has had lymph nodes removed, but the daily wearing is not mandatory. I'll wear them some of the time, but it's not as important as it once was, and for that I'm relieved.

So much to write about, so little time

I have so much to write about and seem to have so little time in which to do it. Must remedy that. Next week. Oh, yes, I am the Queen of Procrastinators, in case you didn't know that already about me.

Meanwhile, I think I might be suffering from post-cancer Post Traumatic Stress syndrome or something. Or, what is it people coming back from war zones talk about...reintegration issues? I'm sure it has a real name but I don't know what it is.

::sigh::

Meanwhile, I've been having a pretty good time doing things I enjoy...hiking, camping, kayaking, and right now, I'm heading out to a Women's Weekend in W. Virginia with a group of friends from town.

If you've been following the Story of Henry...

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