Nothing to say

I feel like I should have something to say, but I don't. This must be close to a first....ever.

How to keep from feeling sorry for yourself

Watch your child get steamrolled by a player on the opposing team with the build of an action figure and who probably has 50 or more pounds on him. See your child collapse onto the field, screaming. Watch other players frantically call the "coach" over. Observe players carry your child off the field. Wonder why your child is lying on the bench and other players are hovering over him. Find out your child is unable to walk. Listen to your child bellow in pain as he's helped to the benches in front of the building. Have your child carried to your van. Listen to your child bellow like a wounded cow for the entire drive back to BG and to the ER. Sit with your child in the ER for 2.5 hours. Laugh when your child gets loopy on codeine. Shudder at the mention of taking your child to the orthopedic doctor next week. Hope it's just a sprained meniscus. Pick up your child's best friend (who had originally ridden his bike at 10 pm to the hospital) and go to Blockbuster for movies and special video games. Give your child more pain meds and ice pack. Go to bed hoping your child is all better by morning because you know that crutches and this child are a bad mix.

Yes, for those of you keeping count, this is the second trip to the ER in less than a week for my children. Yes, people remembered us. Yes, we are making good use of our health insurance this year.

It's not as bad as it could be...

...but not as good, either.

Basically, for as pleased as I've been with the tests I've had done at Wood County Hospital, I'm not so pleased now. On the other hand, UTMC's communication also leaves a lot to be desired.

Apparently, WCH never sent the report from my MRI to ANY of the five doctors listed on the order, even after the surgeon's office called and requested it. However, the surgeon's office went ahead and scheduled my surgery, without consulting with the surgeon, who is out of town taking her Board Re-certification exams, which is what prompted the surgery center to call me and set up my Pre-Op appointment today.

I, of course, didn't find this all out until I was at the plastic surgeon's office, expecting to plan my surgery. Instead, I heard "this may not happen...let me make some phone calls...."

To WCH's benefit, when a fire was lit under them, within 15 minutes the report was in the hands of everyone who needed it. And I knew it wasn't good when the plastic surgeon came in and said, "I have Dr. Mo on the phone and she wants to talk to you..." If all was good, she would have no need to talk to me. I felt just like I did when one of my parents would say, "We need to talk..." That was never a good sign. I was right this time, too.

Basically, the MRI shows more tumor than can be felt or showed up on the last mammogram. It has shrunken appreciably, but is still there.

The onco suggested delaying surgery and doing two more rounds of chemo, which is when I lost it. I'm so over chemo. I'm so tired of my legs and hips hurting like I have rheumatoid arthritis. I'm so tired of popping vicodin like Dr. House.

She asked me to come in and talk to her on Monday: "Just stop in the office any time" (which explains why when one goes to see her, there's always a ridiculous wait. As we talked (or as she talked and I sobbed), she offered a second option: surgery now and 4 rounds of a different cocktail afterward.

At that point, I felt like the whole world was upside down and I was totally unable to make a decision. That's when Dr. Mo and Dr. Welch started talking Dr. Mumbo-jumbo. After that, Dr. Mo said that she'd changed her mind and her preference was not to go ahead with surgery and to switch up my cocktail afterward. Neither option increases or decreases survival rates, so maybe taking a small break from chemo (6 weeks) and then starting with a different cocktail will "shock" it, as Dr. Mo put it. Then radiation for 5.5-6.5 weeks.

I guess this is what I get for saying I didn't know how people do two sessions of chemo. Will I have any brain cells when I'm finished?

Guess I shave my head again this weekend.

On the bright side, I do get the surgery I want, with tissue expanders on both sides, which as Dr. Welch put it "burns no bridges." If the one on the side to be radiated survives radiation, all is well. If not, we have other options to consider at that time.

At least for now, there is a plan and a more firm timeline, and I'll still have all summer to recuperate from this hellish experience.

So, that's where things stand now.

Oh, and I need to find a couple of diaper pins. Walmart in Toledo carries cloth diapers, but not pins. What's up with that?

Happy Phone Call....

This morning I got a phone call from the surgeon's office, wanting to schedule my pre-op appointment! Yippee!!! That means that the "op" is a go, Dec. 16th at 12:30. That's a week from today.

The nurse on the phone didn't have any information about my MRI, but I'm assuming it was "OK" or they wouldn't be scheduling the surgery. I'm already called the onco twice to ask about the MRI, so will let it rest for now.

At this point, the only glitch is that the pre-op appointment conflicts with my appointment with the plastic surgeon. I'm sure that will be worked out somehow. I have to practice being Zen about these things.

No News is....

....I have no clue. I haven't heard about the results of the MRI yet.

I called the Dr. Mo yesterday and her office said they'd call me when they got the results. How long can that take?

So, what I am guessing is that the results were inconclusive and Dr. Mo and Dr. Leininger are either cage fighting or mud wrestling over the final outcome.

I just want to have surgery next week. I do not want more chemo. I'm tired of chemo.

After the discussion with the radiation onco and to stop Debbie from feeling like a stalker...

I know I've been negligent with the most recent update after Friday's meeting with the radiation onco. For that I apologize.

For starters, he looks like he's maybe 16, complete with tousled hair. That was rather disconcerting. Perhaps, though, his youth is working in my favor.

The previous week, the surgeon gave me some rather sobering arguments for delaying reconstruction until the completion of radiation. Basically, she argued that inserting a tissue expander on the side being radiated could, not necessarily would but clearly could, interfere with treating the cancer. Clearly that is not something that I want. After talking with her, I was almost convinced to just not do reconstruction at all, since after radiation treatments, an implant is not a possibility on the radiated side and I'm not willing to sacrifice my abdominal muscle and the very real potential for other complications from that down the road. I plan on being in this body for quite a few years yet, and it doesn't seem logical to set myself up for a lifetime of back and abdomen issues just to get a boob. For me, the only logical option for reconstruction is implants. There is a much less risky type of "own tissue" reconstruction, the diep flap. However, I can't get two breasts out of my own flesh according to the plastic surgeon (which I think simply can't be true....I am certain I have enough fat for two boobies) and I don't want one breast built one way and the other built a different way. There is a possibility that some tissue from my back could be used but that is yet another incision site and carries its own surgical risks. Call me wimpy, but slicing up my body doesn't sound like fun. Here is an overview of my options. Yes, a tummy tuck would be nice, but at what expense? Weeks and weeks of recovery for that incision alone.

My ideal would be two fake boobies.

The radiation onco was clear that having a tissue expander would not be ideal during radiation, but that it would not negatively affect the benefits of radiation. It would not change the treatment of the cancer. What it does do is make his job harder. Cry me a river, Doogie. It may increase the amount of radiation to my lung and heart, which may increase my risk of short term complications (a type of pneumonia that is fairly rare) and long term risk of heart disease (but not significantly). I figure the former can be treated and the latter will be offset by changes in lifestyle. He seemed to agree.

Of course, there is also the chance that the implant won't survive the radiation. According to most studies, about 50% do survive. If it survives, an implant is easy to do. Having undergone radiation, there is a higher risk of capsular contracture, but that is fixable. And it may not happen.

Once I mentioned that I wasn't shooting for huge boobs, that the tissue expanders wouldn't be any larger than what I already have and may even be smaller, he was much more amenable to the idea. Remember, my reward--other than survival--is to never have to wear a bra if I don't want to for the rest of my life.

I had my MRI this morning. That will decide if I move on to surgery next week (which is what really for pragmatic reasons needs to happen) or if I do more chemo first. People have been asking why doing as much as possible to eliminate the tumor before surgery is necessary and I finally got an answer to that: because of where the tumor is located. The absolute smaller it is, the better the chance the surgeon will get the all important "clear margins". It would be different if the tumor were in the middle of my breast tissue, but it is in the breast fold, on top of a rib, near the edge of the breast. The smaller the tumor, the larger the possibility for clear margins.

Hopefully, I'll get good news later this week. I need some. I need to have surgery next week. Otherwise, I'll be doing that at a very inconvenient time. It really just needs to happen now.

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?