Another happy post...

Today, my eldest child is 17. I'm pleased and proud of the young man he's become. It's hard for me to believe he's grown from the incredibly fat baby--so fat I couldn't button the side buttons on his size 2T Oshkosh overalls when he was 5 months old--to someone who can pull off Joey Ramone skinny jeans and still need a belt. He's making great headway moving into adulthood, most importantly by becoming accepted as a peer in several adult circles, including political activism. All in all, he makes my life easier and I'm glad he's a part of it (I feel the same about his brothers, but today is Nathan's day). I think everyone in BG is better off because Nathan is in the world, and that's how it should be.

...and now for a messsage from my sponsor...

I met with the Radiation Onco yesterday. More on that later. But for a brief time out, I suggest everyone in town come to Grounds tonight.

See you there.

Genetic Testing

There are probably many reasons I'm so successful teaching GSW 1100 students, some of the weakest students at BGSU, but clearly one reason is that I understand their need and ability to procrastinate.

I had my blood drawn today so that I can be tested for the "Cancer Genes" BRCA 1 and 2. This is billed as a pretty big deal, a pretty important, heavy decision. So important, that two weeks ago I was supposed to watch a dvd about it. I didn't. When I found out about the "cancer gene," it never crossed my mind that I wouldn't be tested for it. It seemed like such a no-brainer I just couldn't carve out 20 minutes to watch the dvd.

I was taken slightly by surprise today when I got my shots and the nurse suggested I "just go next door and get [my] bloods done." I wasn't expecting to have blood drawn and was clueless until she said it was for the genetic tests. Oops! I signed all the consent forms, thinking that if I hurried home and watched the dvd, I could always cancel the tests later:) Really, I didn't think it was a big deal (other than financially). After all, what's the worst that could happen? I'd be positive and uninsurable? I'm uninsurable now. At this point, I have so many pre-existing conditions, every person in my family has significant pre-existing conditions, that we are all uninsurable.

The dvd starts out talking about how serious the decision to get tested is. And I sat there for 20 minutes thinking, "If this is the most serious decision some people ever make, they need to get a life." I think I pondered birth choices more.

Simply put, 60% of women with BRCA 1 or 2 mutations will develop breast cancer as compared to about 12% of the general population. Twelve percent isn't that big of a risk, but I'd be buying lottery tickets if I thought I had 60% chance of winning anything. Breast cancer isn't a prize, though.

Among the general population, about 1.4% of women will develop ovarian cancer. Among BRCA positive women, 15-40% will develop ovarian cancer.

The BRCA gene also indicates an increased propensity for other cancers as well: cervical, uterine, melanoma, gall bladder, prostate, pancreatic, and testicular cancers.

To my way of thinking, cancer isn't like Huntington's Disease, for instance. There is no real treatment for Huntington's. Huntington's is progressive. It happens, and although the time line isn't clear, the outcome is. I can understand why people who might be at risk for degenerative, fatal diseases like Huntington's, may not want to know if they have the gene.

On the other hand, with the BRCA gene, there are specific actions that can prevent certain cancers from forming. Ovaries can be removed, for instance. Breasts can be removed. Hypothetically, had I known in my 20s that I had a 60% chance of developing breast cancer, I'd have done a lot of things differently. I'd have had my children earlier and closer together, for instance. I'd probably have stopped at age 28, regardless of how many kids I had. And then I'd have had a double mastectomy, no questions asked. If I find out next month that I'm BRCA positive, my ovaries will be gone, no questions asked. If they aren't there, there is less chance of ovarian cancer. Total hysterectomy would be my choice. Seriously. Why would I want to hang on to a potential death sentence? One time when I was talking about this, a well-intentioned friend suggested that removing my "female" bits and pieces would negatively affect my sex drive and sexual feelings.

Excuse me while I roll on the floor laughing.

Happy sex vs. chemo...it's a damn no brainer. No one is getting to experience my bits and pieces these days! Bald and bloated, vacillating between constipation and diarrhea, too tired to move, and in a fair amount of pain...I'm thinking that my happy sex days are in the past for now. To his benefit, my husband hasn't taken advantage of all the drugs I'm taking to take advantage of me:) Between the chemo brain, vicodin, ambien, codeine, and general physical degeneration, I'm the next best thing to a drunken sorority girl some nights. Even my kids know to remind me of what we've discussed after 9 pm.

If I'm BRCA positive, I'll certainly figure out a way to get at least a full hour of exercise each day for the rest of my life. I'll have justification for many more screenings. Doctors will take me more seriously. My children will know whether they should get tested or not, and make that decision early in life. They can use that knowledge to guide their lifestyle choices. They can use that knowledge to help choose a partner.

So, I'll keep you posted.

Hair that doesn't move

I had to go up to Dr. Mo's office today to get Procrit shots in an effort to bring up my hemoglobin, although getting it up to 10 is pretty hopeless. I guess 10 is the magic number doctors want before doing surgery. Whatever. That's why there are blood banks.

Nathan and I were the odd ducks today in the waiting room. Everyone else was a couple, all were in their 70s would be my guess. The women all sat to the left of the men.

Lately, I've been noticing how much younger old people seem. Not just because I'm--obviously--getting older but because "old" styles aren't quite so old seeming any more. So few people wear dusters any more, you know? Two of the older women were wearing some awfully nice clogs. I'd wear them. One had on a really nice NorthFace jacket that Nathan thought was nice. However, one thing seems not to have changed over the years.

All three women had hair that doesn't move.

Perfectly coiffed helmets of gray curls perched upon their pencil shaded eyebrows.

Wigs? Lots of Aquanet? Both? It seems to defy nature.

Will I end up with helmet hair? Is it, like crows-feet, inevitable?

The Icing on the Cake

Today, after the crappy week I've had and especially after the stressful last 24 hours, after six infusions (and theoretically no more...fingers crossed), my eyelashes and eyebrows almost totally fell out. Eyelashes were thinning, but just since yesterday, they are probably 80% gone and eyebrows fell out when I washed my face just now.

I really don't care, but I was hopeful that I'd not lose them all.

Do I break out the eyebrow pencil? Probably not. If I screw up, it'll look even worse.

I can't even begin to imagine who those who are vain handle this.

Can't See the Forest For the Trees

It all makes sense now I I know my arm pain is due to Tennis Elbow. I'd been so focused on it having something to do with the chemo or port that I'd overlooked why, were it TE, it would go in cycles with my treatment. I've had problems with TE in the past and I just self treated. Tynan, the beast baby, started it when I had to lift his lard butt in and out of his car seat, and then it flared up again a few years ago with that powerless steering in the old van.

It seemed odd that something that would be caused by chemo would be better after my infusions. Being better before would make sense, but the pain goes away totally within a day or so of my infusions....

DUH....I'm so jacked on steroids I'm surprised I can even feel anything. How is TE treated? One way is through steroids.

Well, after three days and a huge bag infused yesterday, it's clear why I have no pain today.

Amazing things, steroids. This is one silver lining I don't mind. I just wish I could figure out a silver lining for swollen face, irrational food cravings, and lack of sleep.

Speechless...

Wow, doctors certainly have strong personalities, especially women doctors who have risen to the top of more traditionally masculine fields.

My Onco, who I really feel is in my court, called me into her office today before chemo, asking me why my surgeon called her at home last night "freaking out" and saying that "the chemo hasn't done anything to my tumor. The onco and I know this is bullshit. The surgeon didn't even see me until after my second round of chemo, so she has no clue although she does have my films. I don't know what her deal is and that's basically what Dr. Mo said today.

Meanwhile, I've already written about how the surgeon and the plastic surgeon are disagreeing about reconstruction options. As an aside, I'm becoming more and more convinced that flap surgery is not an option, at least not in the near future. Maybe in a year or so down the road. I'm just not willing to sacrifice weeks and maybe months of time when I could start to feel good and work on regaining my health to some boobs. I'm sick of feeling sick.

So, the surgeon called me in to get an order for a breast MRI and wants it "asap." OK, I'll break the rules in chemo and call and schedule that today. Then, Dr. Mo says, "Well, that would be stupid, let's give this round of chemo a chance to work...there is a little lump there, but it could be dead cells or it could be gone after this round...regardless, Anita is nuts that the chemo hasn't been working." So she then says, "Let's get this MRI scheduled for 10-14 days after this round of chemo to give this round the optimal chance to work." I reminder her Anita, the surgeon, wants it done ASAP and Dr. Mo responds, "Well, *I'm* the primary here and I say 10 days, so I'll have my people schedule it and I'll tell Anita that's how it's going to be. Leave that up to me."

Yikes.

Then she drops the big bomb and almost made me cry. If this "little" lump is full of cancer, surgery will be delayed and I'll have at least another round of chemo. Otherwise, if they do the surgery and find active tumor, I'll have to do another full effing 18 week course of chemo.

Now, I'm feeling more vulnerable than before.

First of all, I thought we had a plan. Secondly, I'd been led to believe everything was going well. Third, it's not cool to have your doctors spatting over you. Fourth, I thought I was getting some control over my life. I can actually make plans for surgery. I like making plans. I've never been good at following them through, but I'm good at making them. Fourth, for the first time in months I heard the words, "Your best chance of survival..."

No, really, survival is my only option, yet, I can really begin to understand the whole concept of "quality of life" right now, staring another full course of chemo in the face. Possibly 18 more weeks of this shit, after surgery? It'd take more than a low dose of Lexapro to get me through. It might take more than a low dose of Lexapro to get me through the next two weeks....

Another full round of chemo will leave me positively brain dead. Louis is out of work, I'll be too dumb to ever work again if I have to go through 7 more treatments of chemo. I can barely function now. It would be interesting to know how much my IQ has dropped.

If I didn't have kids, I might consider the option of dying smart as opposed to living dumb and sick. This has been hard enough on the kids already. The only positive is that I can't beat a single member of my family at any games at this point...not even games of chance, which in the grand scheme doesn't bode well.

One mystery solved

...perhaps.

I saw the nurse practitioner with my family doctor today, and all I have to say is "Thank the goddess for general practitioners!"

I went through my spiel about my forearm, how it seems to be related somehow to my chemo cycle but isn't listed as a side effect (well, muscle and joint pain is, as is swelling, but not limited to one particular area, like only a forearm. The breast surgeon, to her benefit, did say that she believed it was related to the chemo and that there are lots of unlisted side effects, especially with taxotere. She had no other suggestions, though.

Turns out it's tennis elbow, made worse by the chemo (we figure that because it gets better and worse with my chemo cycle). I've had issues in the past with my elbow more so than my forearm: when Tynan was 30 lbs and 5 months old and I used my right arm to lift him into and out of his car seat, hold him to nurse him, and carry him; when we owned that big, old, maroon van and the power steering was out. But the pain never radiated down my arm or affected my muscle.

Bad news, depending which surgery option arises, if I don't have the breast on the right side removed, this will be the arm I use for everything and, therefore, may end up needing to waste physical therapy visits on it.

Good news is I have a double mastectomy, I'll have quite some time to rest it. That's what I'm hoping for.

At least I know what it is and have some ideas for relieving the pain.

Just when you think you have a plan...

...it all goes to shit.

I thought that we had this surgery thing worked out. I thought the plastic surgeon and I had a plan.

Today, I found out that, no indeed, there is no plan. Seems like the plastic surgeon and the breast surgeon have been having communication difficulties. Seems like no one has really taken time to explain to me the whole process for radiation. Seems like nothing can be fully decided until I meet with the radiation oncologists next Friday. Then, depending on what he says, I can re-meet with the plastic surgeon, and then the surgeon will be happy to do whatever I want her to do.

Need I mention each of these appointments costs me $35, which isn't much until you add up all the $35 appointments I've had in the last few months. About $525 worth. That's like the annual soccer fees for 1.5 children or something.

So, here are my surgery options:

Option A (what I had thought was the plan):
* bilateral mastectomy, immediate reconstruction with spacers, followed by radiation and then implants at a later date. The downside to this I thought, was that there is always a chance the radiation will damage the one spacer and it would have to be removed, thereby ruining my chance to have an implant on that side. There is also a chance that the radiation would cause the skin to contract and I'd have to have that side "fleshed out" with my own tissues, which involves micro surgery and a longer healing time, either soon or sometime in the future. If I "lose" the spacer, my only option for reconstruction is via my own tissue, and that would involve both abdominal surgery and removal of tissue from my back, then more surgeries to repair the mutilation of those areas as well as a week long hospital stay and 6-8, maybe 10 or more, weeks of recovery at home. Big time, serious, painful, significant crap, not to mention potential for abdominal problems down the line and other crap I don't want to deal with.

Option B (what the surgeon thinks the radiation Onco will advocate and what she advocates):
*complete mastectomy of the affected side, no spacer, immediate radiation, 6 weeks after radiation is finished prophylactic mastectomy of the other side with immediate reconstruction via my own tissue (see above for issues with that) on affected side and implant in my other side. In clothing I'd look balanced, but in reality, I'd have one breast that is "natural" and one that defies nature. One that would age and sag and one that wouldn't. That totally doesn't appeal to me. I have a thing about symmetry.

Option C (which no one is talking about but me and Amy):
* no reconstruction on either side and just going breastfree. I don't think I'd wear a prosthetic. I've never heard a single good thing about them.

Of course, option C is always lurking there because there is a pretty high chance that the reconstruction with my own tissue won't work and the tissue will die or part of it will die and I'll be left mutilated worse than before.

None of these options except for the first, initial plan, appeals to me. Two major surgeries isn't appealing, two different types of boobs isn't appealing, I thought I'd decided against the autologous tissue procedure. I've not read one single good thing about it. Nothing appealing there at all as far as I'm concerned. This whole thing could eat up months and months of my life and cause me lots and lots of pain, scarring, and more surgery in the future to fix the issues arising from the whole procedure....

At the same time, mutilation for the sake of boobies seems to go against some of the deepest held philosophies I have.

I haven't felt this overwhelmed since my initial diagnosis.

Yet another unwanted gift

Chemo-brain.

I mentioned on FB yesterday that assembling Thanksgiving Dinner proved a challenge with chemobrain. Quite seriously, it was a joke. It wasn't the whole "having it all finish at the same time" issue so many people have. That has never been an issue for me. I can time things quite well. Yet, the little things just kept slipping my mind or simply never crossed my mind. Quite basic things that should be second nature by this point in my life. For instance, I rinsed the turkey in the sink, went to grab the roasting pan, and realized there was no roasting pan. After I sent my husband to the garage to retrieve the roasting pan, I realized I had bought a disposable one. Then I couldn't remember where it was. Turns out, it was still in the van. I put the table clot on the table without the pad underneath. I forgot to cook the brussels sprouts. I didn't even buy the cauliflower for mashed cauliflower. I never did find the serving platter. I actually spent the better part of a minute staring at the turkey, wondering how to get it out of the roasting pan before I remembered my pointy lifting thingies. I never did manage to get around to locating the electric knife for carving. Good thing teenage boys don't care. At one point, I remember just walking in circles in the kitchen not even knowing what I needed to do.

Until fairly recently, chemobrain was only officially recognized by those who suffer from it. I find it interesting that those who have breast, ovarian, and prostate cancers report the highest incidence and most severe long term problems (probably not counting those with brain cancer). Since 2/3 of those people are women and since men are less likely to complain about something like being unable to do simple tasks like remember their dog's name, I'm sure for years the medical community chalked it up to just another "female complaint." Sexist thought is still highly prevalent in the medical community after all.

However, now there is a growing understanding of chemobrain. And it seems both unfair and otherwise pissy that it can be one of the longest lasting side effects. As if the humiliation of cancer isn't already enough, 30% or more of us get and stay stupid for a year or longer. I'm not sure I can get any more stupid. The one thing I worry the most about my last round of chemo is losing even more cognitive function.

Having a difficult time with names under normal circumstance, I'm absolutely worthless when it comes to names now. There are still students in my classes whose names I don't know. Don't even ask me to tell which Nick is which. On top of that, there are at least two kids in each class who I still can't get a name to face thing going. Even worse, I think, is that even if I can put a face to a name on a sheet of paper, I can never recall the names in class. There's a handful in each class, and that's it. So, I call on those students over and over and over and over. Not a "best practice in teaching," that's for sure.

Short term memory is the absolute worst. For instance, I just looked at this list of symptoms and flipping back to write about it here, I forgot the list. Given what is on the list and given that I experience every single symptom, you'd think I could remember some of them. All I could remember was "forgetfulness," which isn't even on the list!

Tasks do take longer and I find the most basic things mentally exhausting, which contributes to physical fatigue. I totally forget conversations I've had, sometimes within moments of having them. Worse yet is the inability to remember things from the past. It's like my past is being wiped away. As if my brain is a dry erase board that is being wiped clean. I'm totally stymied by simple mental math to the point where my nine year old can not just beat me, but do problems I can't even begin to do. It as if I forget what I'm solving in the middle of the problem. Grading seems hugely insurmountable. I lose my train of thought in the middle of an essay. I forget what I'd intended to say in a comment while writing the comment. By the end of the essay, I can't remember whose essay it is sometimes! It is taking me nearly as long to grade essays as it did when I first started teaching. Spelling has never been my forte, but now, I'm atrocious at it. Words don't look right, my fingers don't move right, and I'm clueless. Sure, I have spell check, but still, I should be able to spell "embarrassed," but I couldn't on the first try earlier today.

This cognitive impairment is clearly affecting my quality of life. There are certain books I'd like to read, but really just can't. I'm not talking anything super-duper challenging here. I'm talking The Time Traveler's Wife. I'm talking Three Cups of Tea. I have difficulty following certain television shows. Again, I don't mean Nova. I'm talking NCIS and Law and Order. I can watch Monk but seem to lose my train of thought with (shit, I've forgotten the name of the show....must go google it)...White Collar. Even worse is my inability to hold a thought in my head. Just now, my husband left to run to WalMart. Right before he announced he was leaving, I had been thinking of something we needed. By the time he left, I'd forgotten. I still can't remember what it was.

One of the areas chemobrain is most obvious is my blog. It's embarrassing how I wander off topic between the title of a post and the end. For evidence, see my most previous entry. What is that mess? I had something all thought out about non-harm and the military, but it disappeared as I started to write and I never was able to get it together again.

So, why is this post titled "Yet Another Unwanted Gift?" I'd almost forgotten. I chose that title because, in my search for silver lining (and I'm damn tired of that search), I suppose I am gaining perspective and understanding for those, especially my students, who struggle cognitively. Once again, I think I had a pretty good handle on that, though. I didn't need to qualify for special ed myself to empathize with my students with learning disabilities.

Meanwhile, I just get dumber by the day.