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Tuesday, December 29, 2009

If we could read kids' minds...

...what a tale their thoughts could tell.

At least a nine year old's mind.

Before I had my surgery, Tynan and I looked at pictures of women who have had mastectomies. He's really sad that my squishy boobs are gone, and he knew he'd miss them before they were gone. One of his favorite things to do was to lay his head on my chest and cuddle.

However, it never occurred to me to discuss with him what took place during the surgery.

A couple of days after surgery, Louis offered to take all the boys somewhere so I could sleep and Tynan really didn't want to go. Finally, he asked me if I was sure I wouldn't burst open and bleed to death. He hadn't wanted to look at my wound, but had seen enough to have seen the steri-strips down the middle of each former breast. He though that masking tape was all that was holding me together. This explained why he'd been sleeping at my feet for a few nights. He was waiting to save me from exploding.

Sunday, December 27, 2009

Sort of a neighborhood Tetris...

Just walked around two blocks. I'm also using this to combat chemo-brain...all the way around each block (all four sides) and end up back at my house. Two blocks, easy to figure out. But what about when I get to all the way around 7 or 9?

Also walked through Meijer in search of bras. Found some. Now, back to the couch.

Should I buy a carbonated water maker?


I'm sure this post-surgical bra thingie was designed by a man. There's no give in the band, so wearing it is like having a steel band around my chest. The huge velcro panel is scratchy and stiff. It's not like it is providing any compression to help with swelling as there's entire "cup" areas that don't touch me at all. And the fabric is rough and doesn't breathe.

I was kindly provided with TWO of these things and told to wear them at all times.

Yesterday, I said "fuck this" and put on my zip front jog bra that is much more comfortable. The band stretches. The fabric breathes. There is no scratchy velcro. It's much more comfortable rubbing on the incision under my arm.

In a few minutes, I'm off to buy one or two others.

It's the little things that make me feel more normal and less invalid (hah! look at that double entendre).

Now let's hope I can find some...sadly, the boobies are gone, but the girth remains.


I guess I've been keeping a better day-by-day update on Facebook than here, and I just had a question about drains.

Drains are marvelous things and great medical inventions, although I understand their use is diminishing due to better surgical techniques and increased infection rates in hospitals. Also, currently, the medical thought is "the faster the patient gets up and moving" and "the farther the patient moves" the better the patient recovers, and it is thought that drains inhibit such movement.

I had three Jackson-Pratt Drains inserted during my surgery. Two were removed on day 7. The last one was removed on day 8, although had this silly holiday that shuts down the Northern Hemisphere not been right before a weekend, effectively making a 4 day weekend, it would have stayed in a day or so longer. It's always a balance between the benefits of drainage and the increased risk of infection. Everyone knew I wouldn't need it until day 13, which would be the first opportunity to have it removed once the holiday craziness began, but day 8 might have been a day or so soon. But they took it anyway. Here's a video of JP drain being removed, if you are interested.

They are out, and I feel like I am healing well. Once again, it is amazing how much you use the muscles in your open drawers and closets, adjust yourself on the couch or in a chair, opening and closing car doors (I'm thankful for living in flat NWOhio because the slightest incline incapacitates me when it comes to car doors), putting on and taking off seat belts, washing your back, holding a drink, getting a glass or plate out of the cupboard, getting food out of the fridge...and it is also amazing how much weighs more than two-three pounds. For instance, I had to take three trips to carry my pillows to the couch last night. I have a hard time adjusting blankets. Who knew?

Saturday, December 26, 2009

Walk around the block tonight...walk, walk, walk in broad daylight...

Yeh, that title makes no sense.

But I did get outside and walk around the block. Gravity is not a nice thing. Otherwise, it felt good. I'm thinking perhaps I should add a block a day. If I were serious about that, I could justify buying a new pair of shoes:) Good waterproof, warm, walking shoes for bad weather.

Or maybe I should just join the Community Center.

Thursday, December 24, 2009

Awesome Christmas Eve Gift

The gift of a shower. First shower in 9 days. It was wonderful. Exhausting, but wonderful. Seriously, taking a shower and changing all of my clothes all at the same time was the most sustained exercise I've had in 9 days, and it got my heart beating.

That was depressing.

And the nap I had to take afterward, while enjoyable, was also depressing.

But the hot water felt wonderful. There were several areas I couldn't reach, like my back and my lower legs/feet, but I did manage to wash my head, even if it did take my breath away.

I still can't open my closet, so I don't know why I find this surprising.

Merry Christmas to all.

Monday, December 21, 2009

Today's Pathology Report

1. The surgeon got the whole tumor
2. The edges were clear and wide
3. 15 total lymph nodes removed
4. 3 positive, the third "less so" than the other two
5. still recommend radiation, but it's now "more negotiable."(ha! Not in my reality where I'm willing to do whatever in the hell is needed to make it all gone, all the way, for all time)
6. Surgeon quite pleased (although who has ever met a surgeon who would say, "Dang, wish I'd done a better job...oops....should have gone to bed earlier last night").
7. Chemo to this point has been quite effective (although obviously not as effective as I would have liked it to have been).
8. Four more rounds of a different cocktail between now and start of radiation.
Silver Lining: no daily driving to radiation in the worst weather of the year; more time to adjust filling of tissue expanders to exactly how I want them; maybe I'll decide I don't want new boobies and will have time to have expanders removed without screwing up radiation landmarks; several months of Louis' working at new job and (hopefully) getting some sort of routine going before we'll have to figure out how to get him to work, me to radiation, kids to kid things, etc. around the reality of three drivers and two cars; finally, I'll be fully released to regular daily activities before I have to deal with driving to daily radiation...that would be a total pain in the neck.

Pre-holiday motherly advice

Sit and stand up straight.

Yes, indeedy. It's easy to fall into bad posture habits and that just makes getting around more difficult, especially when something else throws you off.

Yesterday, I swear my shoulders were hunching and so tight it felt like my spine was going to slide down my esophagus (or something like that). I actually regretted leaving the little "blow into this torture device" at the hospital because it felt like I couldn't take a full breath. I had fantasies about blood clots in my lungs. Then I realized that my shoulders we....oh....I don't line with my cheekbones.

Once I slid my shoulder blades on back like I learned in yoga, the whole world took on a brighter appearance. Funny how important oxygen is. The world no longer had fuzzy edges, which until then I'd attributed to Vicodin.

Alright, don't panic. I wasn't seeing fuzzy-edged world. That was just a figure of speech.

Anyway, the more open my chest is, the better I feel, the less I just fade into irrational daytime sleep, the healthier I feel.

On the other hand, like a hood on a raptor, if I slide into really poor posture, off into the Land of Nod I go.

What does this have to do with holiday advice? With all the parties, late nights, hustle and bustle, keep your shoulder blades back and chest open, and not only will you feel better, but you will also have a better sense of balance and be less likely to slip on the ice whilst carrying a load of presents or a plate of cookies and hurt yourself:)

Happy holidays everyone!

Saturday, December 19, 2009

Thought for the day

Kim Young turned me on to this article. I'd been unaware of this columnist, partly because I just don't enjoy reading online much and partly because, although I rarely read anything in Salon that I don't like, for some reason, I don't like reading Salon. However, I encourage you all to read this. It's almost like the author is channeling my thoughts, only expressing them much more eloquently.

Friday, December 18, 2009

Embracing the new...

Having really only had surgery once in my life, and that procedure being an emergency splash and slash c-section 17 years ago, I had no idea what to really expect from a double mastectomy. It sounded pretty horrendous, and I know that friends who have had other breast surgeries have experienced quite a bit of pain.

However, I had also read online a lot of people who described it more as "discomfort" than pain. I think that's what I'm experiencing. It's a dull, ache. It feels like I've been kicked in the sternum, so it hurts to breathe, and then there is sharp pain under my arms when I reach too far or forget what I can't do, like try to move my laptop off of my lap without help.

I slept very well last night in the recliner. Perfect situation, with the arms being just the right height and the recline (?) being perfect. Then I dozed all morning and most of the afternoon, so I'm feeling well rested. There is an element of stir-craziness setting in. It's not so much that I'm sick of being home, I'm sick of not moving, so Amy drove me to Blockbuster to get mindless movies to fill in the gaps between what I have recorded on the dvr.

I'm starting to itch where the tape is and where the plethora of betadine is staining my skin. It looks like someone hosed me down with betadine, and then never washed it off. It's all over my abdomen and even on my hips. I'll deal with that tomorrow, using some of those slimy "heat in the microwave" things they put in the "gift pack" at the hospital.

Some immediate challenges:

***the pain pump fanny pack, which also holds my drains, and toileting. There are lots of tubes and it doesn't zip all the way because there is so much stuff in it (three drains and the pain gel pack....all the size of racketballs or maybe handballs) and the tubes....I've met this challenge by extending the strap all the way and putting it around my neck.

***Something that will be an issue in the near future when I start going out in public is the bloody drains, especially the tubes. I know people "pin them up" but I'm not sure where and how that will work. Trial and error, I guess.

***adjusting hats. Scarves are out for now, since I can't hold my hands above my shoulders. Hats provide less of a problem, but they are still an issue.

***opening drawers. It's very weird to have to call a kid down from bed to come open the silverware drawer.

***opening childproof medicine bottles. Children have had to do it for me.

***picking things up off the floor. It's not like I'm tidying up or anything. It's more that I'm clumsy...I dropped my book and was confuzzled as to how I was going to get it back into my hands. Of course, at that very moment, no one else was home.

***lifting my laptop on and off of my lap. It's just too heavy.

***getting into and out of the recliner. In the hospital, I figured out to crawl into bed on all fours and I could get to where I wanted to be without using my pecs. Here, I sort of do the same thing, until I'm in a modified squat and then I adjust myself. Using the lever to raise the leg part is hard. At least it is on the right side which has less damage. But still, OUCH if I don't do it just right. Getting out can be just as hard. I've learned to come out of a chair at a 90 degree angle and then use my abs to stand upright.

***getting dressed (which I've only done once). Right now, I'm wearing this wonderful set of "loungewear/pajamas" Amy gave me. It's comfy fleece and doesn't feel all "invalidy" and "nighty-nighty". In fact, I wore them to Blockbuster and Gen's Hallmark without a second thought (on the other hand, I really wouldn't care, in general, so that might not be a good determiner...). But they can't stay on forever. I last bathed Wednesday morning. I can't shower until sometime after this coming Tuesday when I go see the plastic surgeon. I'll have to wear something else, and I have lots of options, but dealing with the pouch, the bulbs, and restricted arm movement is certainly going to make something as simple as changing clothes much more challenging.

Otherwise, I'm feeling pretty good. Appetite is back. I'm as clear headed as I've been recently. So far, pain has been easily managed, and if it doesn't get worse tomorrow (day 3), it should then start to get better each day. It's certainly better today than yesterday morning (plus, I've learned to move in less painful ways, which has been a big help).

Thursday, December 17, 2009

I hate losing friends...

...especially when the on in particular is my new bff morphine. Yes, they just shut off my morphine. Bummer.

Actually, the pain isn't too bad, as long as I don't use any muscles. So, sitting still if just fine (so far). It feels like I've been horse kicked in the sternum, so it aches when I breathe. But otherwise, the pain isn't continuous. yet. I will miss morphine, though.

reaching for things isn't easy or comfortable. It's not going to be easy to get out of chairs, bed, or the couch at home. I can't even scoot up in the hospital bed by myself....

But in general, I don't feel horribly bad. Since I had no expectations, I have no disappointment.

More later...

Tuesday, December 15, 2009

To answer a few questions:

1) Said child who got hurt was Aidan. He's on crutches. He either has strained his meniscus or might have torn his ACL. A more definitive answer will be forthcoming next week when, presumably, the swelling is down.

2) My confusion prior post aside, I am having surgery, tomorrow. At this time, it is scheduled to the best of our knowledge for 12:30 p.m. I should be home late Thursday. We are anticipating the best possible outcome.

3) I will then do 4 more rounds of chemo, starting three weeks after surgery. I just need to decide what day of the week I want to do it on. That can become my new obsession. Do it early in the week so that I'm chipper on weekends? That's what I'm thinking.

Other questions? Let me know. I have until 9:30 tomorrow morning to answer them.

Monday, December 14, 2009

Nothing to say

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

Saturday, December 12, 2009

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.

Friday, December 11, 2009

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?

Wednesday, December 9, 2009

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.

Tuesday, December 8, 2009

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.

Monday, December 7, 2009

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.

Sunday, December 6, 2009

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.

Saturday, December 5, 2009

...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.

Tuesday, December 1, 2009

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.'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?

Thursday, November 26, 2009

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.

Wednesday, November 25, 2009


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."


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.

Tuesday, November 24, 2009

One mystery solved


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.

Monday, November 23, 2009

Just when you think you have a plan... 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.

Sunday, November 22, 2009

Yet another unwanted gift


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.

Saturday, November 21, 2009

(long and rambling) Ahimsa and Veteran's Day

Veteran's Day was my last yoga class at Stillwaters with Kathie. I'm forever thankful to Amy for turning me on to Kathie and this practice. It has been quite transformative. I will go back after surgery.

On Veteran's Day, we discussed the precept of Ahimsa, which is the practice of non-injury. That seemed like a very appropriate topic for Veteran's day. Without realizing it, ahimsa is something I've been exploring for awhile in my efforts to eliminate stress as much as possible and to focus only on what I must. Ahimsa means non-injury in thought, word, and deed. In my reading, I've discovered that, indeed, I have, unintentionally, been attempting this this semester. Early on, shortly after my diagnosis and when I was being encouraged to take the whole semester (and even the year) off, I decided that I could use the energy in my students in a positive way; therefore, I decided to teach.

Frankly, I've been teaching for quite a while. And there have been semesters (and probably times in each semester) when I've been discouraged, negative, and really quite down on my students. In general, though, I really do enjoy being with them. I derive the same type of good energy from my teens and their friends these days, hence the fact that even on chemo-crash weekends there are usually extra teens around here.

So, in August, I made a conscious decision to be positive about teaching and my students this semester. I vowed to not take their foibles personally and to view them as paths to student success. On the surface, perhaps not much has changed. However, I can honestly say that I've had a lot more patience and derived a lot more enjoyment from those individuals. Viewing them as individuals has also made a difference. But first I had to change my actions and approach, which led to a change in my words and tone, and finally in my thoughts.

In changing my thoughts, I've found it even easier to change my words and tone with my students. All of which has made an even larger change in my actions...all leading to a HUGE reduction in my personal stress level. Sure, not all of them are passing, but I no longer find that frustrating. And I'm incredibly pleased with the progress they've all made. I don't even know if I can put the change into words. I guess it is similar to what I've been telling my children forever: it's about YOUR reaction not HIS action. In taking control of my thoughts and words, I've taken control of my actions, making it easier to develop and enforce boundaries as well as finding it easier to allow for flexibility.

I will admit that I'm a good teacher. But I think I'm jacking it up to a whole new level now. It's not just about getting my students to pass, it's helping them develop into better people as well as better thinkers, students and writers. I want them to leave my class believing that someone at BGSU cares about them as individuals and humans and not just PID numbers and tuition checks or empty vessels waiting to be filled with knowledge and skills. And that's actually quite liberating to me.

What does this have to do with ahimsa? In retrospect, I know that I have harmed individual students, by engendering in them negative feelings, anger, frustration (negative frustration--frustration can also be used positively), feelings of hopelessness and helplessness. This is not to say that the student who emailed me yesterday, basically telling me he is dropping out of BGSU and fears he will fail my class, isn't frustrated and angry, but my role in that is minimal. A year ago, my underlying approach would have been different. I'd have, in essence, looked upon the whole situation differently. And, for the first time in a long time...maybe in forever...I'm not upset, frustrated, or stressed by the students not doing well. Yet, at this point in the semester more of them are doing well than in past semesters. Attendance in two of my three classes is booming. If I leaved "things" tiny, they don't expand into something big which then becomes a negative feedback loop.

But back to part, it seems to me, of non-injury is also the thoughtful pause. If controlling my thoughts is mindfulness, then controlling my words would be restraint. Clearly, anyone who knows me knows that this is one of my utmost weaknesses. I shoot off my mouth, thoughtlessly, numerous times a day. Chemo-brain hasn't helped much in this regard. Heck, half the time by the time something is out of my mouth, I've forgotten what I've even said, let alone what prompted me to say it. It's like there is a huge disconnect between my brain and my mouth. Regardless, I haven't mastered control of my mouth, but with a less negative thought-life, my mouth has been less harmful to others, I think.

I've just made a conscious decision to not get my knickers in a twist, especially about things over which I have no control. Believe me, this has made the many, many hours I've spent in waiting rooms recently much more tolerable. I'm learning to enjoy the quiet solitude of public spaces, to find a centeredness in clearing my mind and just being, even if it is being in a waiting or examining room. If I don't let it get to me, I don't engage in violent or negative thinking. There's nothing I can do about it, any way. If I don't get worked up, then I look at the nurses, technicians, and doctors with more compassion.

The world would be a much saner place if we could all work on this practice. Imagine if the world leaders would just practice "being" and not be in constant, restless pursuit of exerting control over others?

Better yet, what if we all learned to be practice non-harm with ourselves? We can't truly not harm others if we continually show our selfs a lack of respect. No one has been in an waiting room of any sort without seeing some treacly magazine article about "taking care of yourself" by eating right and exercising, blah blah blah. Um hum...whatever. Sure we all know that, and some of us practice it. But what is our excuse for not doing so? Usually lack of time, over commitment, business, other responsibilities. I'm starting to realize that in over-extending myself, in not having clear boundaries that protect ME and my family, I'm committing self-harm, which leads to harming others. How many times, because I'm stressed out by schoolwork, have I pushed one of my children away? Harm done twice. Stress to myself, abandonment of my child. Or, how often have I lost sleep because of procrastination, which then harms me, lowers my ability to practice restraint, and therefore permits me to more easily use my mouth to harm others? How can I teach my boys to treat women well if the main woman in their life doesn't treat herself well?

Yet, our culture makes it really difficult to learn to practice non-harm to ourselves because non-harm does not necessarily mean being self-indulgent. It might mean pampering oneself at times, but if doing so harms others--either in commission or omission--then the purpose is self defeating, I think. I could be full of crap, but if I use family, community, or environmental resources in a way that makes me feel good but is unwise or harmful, then I'm being self-indulgent, not taking care of myself. It's quite a balancing act. I think many people in nurturing roles (teachers, parents, nurses, doctors, social workers, etc) tend to find striking this balance quite difficult. But if we look at ourselves gently, I think that we'd all agree that perhaps it would be easier to take care of ourselves if we'd think of doing so as practicing non-harm

Yesterday, my husband found out his position at the university was eliminated. What that means in the short term is still unclear. It's complicated by the fact that BGSU outsourced food service, forced my husband to take a job in food service when his last position was eliminated in March, and the new company would never have accepted him and isn't required to keep him since they are not part of the "state system." So, he's been tossed back to BGSU and is, sort of, in the same position he was in in March...looking for a bump, which probably doesn't exist at this point. So, at least he wasn't fired. He might be able to stay on Family Medical Leave...none of which is here nor there...but seven months ago, I'd have been much more worked up, much more upset, much more stressed than I am right now. You'd think that I'd be beside myself...and don't get me wrong, I will be at some point. At some point, I'm sure I'll break down and totally lose it.

But there isn't much I can do about any of it. It is what it is. If I take my focus off getting well, if I let stress negatively affect my health, physical and mental, I'll be engaging in self-harm. I can't control what BGSU does. I can control what I do. That's the best I can do. BGSU isn't worth the negative energy that I'm tempted to give it right now. Instead, I try to just do ujjaya pranayama...breathe in, breathe out, in, out, in, out....

And try not to kill someone.

See, I'm still the old Dawn....just more contemplative these days.

Friday, November 20, 2009

for those not following along on facebook...

BGSU eliminated my husband's position today. Again. We might have some, minimal, recourse. At least it looks like he will qualify for unemployment. Happy Holidays!

I feel like I'm in the popular clique now.

I don't get it...

The other day, I was trapped in the Onco's waiting room for a long, long, long time. I'm not complaining, just whining. She's a great onco and never, ever has made me feel rushed. She's always running behind. We all know that. We all go prepared to wait. That's just how it is. It's not like people are there for frivolous happenstance. No one goes to her to hear, "It's just a virus, wait it out" or "take two aspirin and call me in the morning" or "it's just a cold" or "heat rash, not measles."

Anyway, there I was waiting waiting waiting. The only good thing about the waiting room there and the registration area is that there are always people around who make me feel healthy. This last time, there was a man registering next to me and he was as grey as a Crayola crayon. I could hear his every breath, and all I could think was, "He is NOT healthy..." and the woman next to me who had had breast cancer five years ago and was back with leukemia now. It really makes me think that life could be worse (and make me shake my fist at fate and promise it a good ass kicking if it gets worse).

Eventually, though, I had to break one of my cardinal rules about public places: "Do not, under any circumstances, pick of reading material." Even though most cancer patients are actually quite healthy when it comes to contagious illnesses (thanks to Neulasta and the fact that when we are sick we are pretty considerate of others or hospitalized), who knows about caregivers and family members? There are probably very few things crawling with more germs than reading material in public places.


Not surprisingly, most of the reading material pertains to cancer.

Flipping through a magazine called Coping, I ran across an article about Sylvia McNair (a Grammy winner who is also a breast cancer survivor). In one section, the article says, "Now, three years on the other side of that 'failure' called cancer, Sylvia views it more as a gift than a setback." Then, McNair is quoted as saying, "Cancer is one of the best things that's ever happened to me."

Excuse me, but this just yanks my chain.

It's not like I'm all about looking for the silver lining. Without a silver lining (and the help of anti-depressants), I'd be one highly depressed individual.

But one of the best things that's ever happened to her? I get really tired of this attitude. In fact, next to the "be a good girl and wear pink, shut up, be pretty, and remain happy--full of gratitude anyway" attitude, about breast cancer in particular....this "best thing that has happened to me" crap really pisses me off.

No, unless your life has really, really sucked--and I mean sucked to the point that a movie has been made about it--cancer is not a best thing. That is pretty demeaning to the people who love you. Cancer is better than the love from your spouse? The birth of your children? Your place with your family, friends, and community?

Cancer sucks.

Can you imagine someone really believing, "The best thing that ever happened to me was the day that the psycho-sadist put out my eyes with a burning poker because it gave me the opportunity to learn to smell?"

Some might call people who can really believe that saints or prophets. I call them crazy mo'fo's who need some perspective.

I'm not denying that anything (especially something that induces suffering) can provide new perspective, provoke appreciation, and even provide learning opportunities and the development of compassion. In fact, McNair goes on to say, "Cancer is a perspective giver like nothing else I've ever experienced. It has given me so much more than it has taken away. And it has taken away a lot....My body is forever altered. But so is my spirit...and my spirit is now living with much more clarity and gratitude. I'm living larger than I have ever lived....Cancer has given me that gift." I am experiencing much the same, at 3.5 months in even (as opposed to her 3 years out).

But it's not a "gift" any more than when your dog shits in your living room and you learn a new technique to remove the stain and odor you've gotten a "gift." I don't look back at the time a box of crayons went through the dryer along with all the RENTED uniforms for a soccer team and I had to learn how to get melted crayon out of fabric and think, "Gosh, what a gift that was." Sure, I gained perspective, I learned new skills, and now, I can even look back and muster up a chortle.

My friends are a gift. The support I get from friends, family, and colleagues is a gift. The friendships that have deepened in the last 3.5 months and the re-connecting I've done with friends from the past are all gifts. But those gifts were there before. They are things that I could have discovered if I'd taken the time to slow down, to focus on what really is important instead of being swept along in the stream that had become my life. The fact that I've found all those wonderful gifts since my diagnosis is proof that they were there all along.

Just for the record, I do not think cancer is a gift. Nor do I think it is one of the "best things that has ever happened to me."

And if I ever start to talk like that each and every one of you has permission to set me straight. YOU are gifts and I'd never disrespect my family and friends by putting cancer on your level.

Nope. No way.

People said many of the same things after the still births of our babies. Or better yet, "Without those losses you wouldn't be blessed with the wonderful children you have." Wonderfully illogical, yet heartfelt, thinking, that is. No, I'd have other wonderful children. And the ones I have now could still turn out to be serial killers, spouse abusers, the next Hitler, or Republicans. Drat, If Jeffry Dahmer's mother had just NOT HAD THAT MISCARRIAGE....

I'm pretty sure I could have learned all of the lessons I've learned without cancer, too.

Monday, November 16, 2009


I've had pain and swelling in my right arm for 6 weeks or so now. It appears to be related to my chemo cycles, somehow, as it appears to diminish, nearly totally, a few days before I get chemo and then increases in the days after each infusion.

It is improved by yoga.

The muscle in my forearm feels tight. And the pain is nearly all in my forearm. It feels like my hand and wrist should be weak, but they aren't.

The infusion nurses suggested perhaps it was a side-effect of one of the chemo drugs.

Today, Dr. Mo said that wasn't an option. She suggested perhaps it was a blood clot. Oh, joy.

Off for a vascular ultrasound (interestingly, her HUSBAND was the vascular doctor in the clinic today).

No blood clot.

However, Dr. Mo and I ended up discussing life with teenage boys (she has three sons, too) and I totally walked out of the office without discussing with her what it might be were it not a blood clot and what could be done because the discomfort is quite severe at times, to the point that it wakes me up at night.

So, what the hell is wrong with my arm? Now, I have to call the office again and then wait on pins and needles for the call back, ready to drop whatever I'm doing to take the call, which is rather inconvenient during a week of intense teaching and conferencing...I've only once had to say to a class, "I'm sorry, I have to take this call from my oncologist...."

I guess that's one time it's OK to play the cancer card?

I really don't think cancer has read Miss Manners.

Thursday, November 12, 2009


Well, I wrote a 12K entry. Pasted it into word to spell check. Now I can't paste it back here. Either this entry will have to wait until I figure this out or until I decide to retype it. Drat.
----woo hoo....opening up google chrome fixed the problem.

I haven't written much this past week. I simply haven't had the energy. Apparently, I have enough energy to either teach or conference, but clearly not for both activities. Just one of those two activities compels at least a two hour nap. I'm not sure how it works, but I'm pain free during the day, and as the sun sets, the pain increases, until it's enough to keep me from falling asleep by bedtime. However, the pain is nowhere near the intensity as last cycle and the new pain meds either put me asleep or take it away, I'm not sure which. Regardless, it doesn't wake me up, so that's good. Basically, I'm just wiped out. I get tired standing. I can't muster the energy to go grill my brussels sprouts. I got them cleaned, cut, and marinating. Just. Can't. Do. That. Last. Step.
Sigh. I've never been what I would consider "high energy," but this is ridiculous. It is what it is.
I am working hard to find pleasure in simple things. And the most recent simple things are comfortable clothes, most specifically, warm things.
I've clearly never been fixated on how I dress. Some would say comfort has always been my imperative, which is a pretty good description of my jeans/t-shirt/jacket/sweater/mostly natural fiber approach. I don't do heels. I don't do panty hose. I rarely wear 100% unnatural fiber. I own very little that needs special laundering. Heck, I rarely even buy brand new clothing...I prefer others to have broken my clothes in for me already.
However, recently I've become quite attached to warm, soft fibers. Or would that be soft, warm fibers. I think soft is more important right now. I guess my nerve endings are more sensitive than normal.
I practically live in my Smartwool socks. If I'm not wearing Smartwool, I'm wearing fleece socks, and my favorites are the ones that are "aloe infused." Unfortunately, I have large feet and most fleece socks (the fuzzy fleece, which I just discovered is called "plush" fleece) are just a little too small and tend to slide off, but they still rock my world. I imagine that the more shaped, more expensive ones would fit a little better, but there you have it. I'm cheap and am willing to make do in this one instance.
Where I'm not willing to make do though is pajama pants. Oh my gosh. The little bit of heaven I bought at Wal*Mart on Wednesday still makes me happy. Mine are plain blue, but otherwise are just like these. Needless to say, in planning in advance for next semester when I won't be working, I think I will be getting a couple more pair. They are soft; they are warm; they are soft; they are not overly warm; they are soft; they are comfortable; most importantly, they are soft. That they cost less than $10 is a huge bonus.
I do have quite a large collection of pajama pants, most of which I've purchased at Goodwill. Gotta love Goodwill. Gotta love people who buy expensive pajamas and then donate them to Goodwill. If you are one of those people, God Bless you. My family thanks you. I have silk pajama pants. I have flannel pajama pants. I have super soft cotton pajama pants. In general, I don't do artificial fiber pajama pants. However, I decided to take a risk on these plush, fleece pants because I heart my plush fleece robes so much.
I'm not a "lounge in a bathrobe" type, but in the past, we've kept our house on the chill side...and robes are big, roomy, comfy, and warm. Lately, as I can't get warm, I I've been wearing my two fleece robes as clothing in the house, just like normal people might wear a light jacket or sweater or sweatshirt. The only difference is that I have a sweater or jacket or sweatshirt on under my robe.
Anything soft. That is what makes me happy these days. Soft.
Right now, it's 70F in my house, which is warm for us. I'm wearing plush pajama pants, smartwool socks, thick long sleeve cotton t-shirt, plush robe, soft wool hat, and am covered with a big, soft quilt. I'm not hot. I shouldn't need the quilt with the robe. But I do.
Regardless, everything is soft.
You may have noticed that I haven't said anything about pajama tops. In a nutshell, nothing works well. I prefer t-shirts: long sleeve for colder weather; short sleeve for warmer weather; tank tops for hot weather. Peri-menopause partly accounts for the lack of fleece on the upper half of my body. Fleece, sleep, and hot flashes aren't an ideal mix. However, I have been looking for shirts that are comfortable for sleep (and casual day wear at home) that button all the way up the front and are long enough not to scootch up in bed. I have to wear something after surgery next month. All recommendations are for things that button, due to limited arm mobility. Some people have recommended shirts that can be stepped into; however, I don't see how stepping into a shirt would be any less painful than pulling one over my head, except that I won't be able to lift my arms over my head for a period of time. I fail to see how I'll comfortably be able to pull a shirt up, over my hips and waist and get my arms in the sleeves and get the shirt onto my shoulders. Maybe I'll surprise myself.
So, I'm looking for t-shirt type, front closure, soft shirts suitable for pajamas. The ideal would be things I can wear out in public as well, in December and January. It is imperative that they be comfortable.
So far, I've come up with nothing ideal.
I have identified comfortable "street" pants that are non-plush double sided fleece...elastic waist, wide legged, and not looking like pajama pants. Someday soon, maybe they will be on sale and I will buy another pair in a different color. Meanwhile, I wear them several times a week. Warm, comfortable. Comfortable, warm. Wearing them is almost like teaching in my pajamas. Since I wear the same shirts to sleep in that I also wear to teach in some days (I do change between bed and work, don't panic...I mean they serve double duty), today wearing my fleece street pants was like teaching in my pajamas. If I weren't so paranoid about germs and, therefore, change my clothes when I come home from work, I'd sleep in the shirt I wore to school. It's one of my faves.
I've identified comfortable hats and scarves (none of which are "cancer" hats and scarves, by the way). I've identified comfortable pajama pants and robes. I have wonderful bedding and a plethora of pillows with super soft pillow cases (once again, Wal-Mart surprised me...Their Egyptian cotton pillow cases, which I found for $4 each are some of the nicest I've used, especially for the price). I have a wonderful, plush fleece electric blanket someone recently gave me that is phenomenal at reducing leg pain. I have quilts, which I've decided are better than comforters. I have a plethora of Smartwool and fleece socks. I have shoes that don't need to be tied after surgery. I have pull on winter boots. I have 'street' shirts for wearing after surgery, none of which will be good for sleeping. Adequate, but not good. Workable, but not ideal. I want ideal.

Friday, November 6, 2009

My Cocktail

For those of you who have asked:
(Hopefully, I'll do the Herceptin until July, but the other two just once more....(: )




Thursday, November 5, 2009

Infusion #5, part 3

More bad news...apparently, according to the nurse I saw today for my Neulasta shot, my MUGA last month, indicated that my heart function has dropped "slightly" from my baseline before I started chemo. You might be thinking, "Well, you are almost done" and that's true, except that the drug that damages hearts is the one that I have to be on for a year (aka "chemo lite") and it is the one that is most effective on my type of cancer at keeping recurrences at bay. Without it, the chance of recurrence is quite high, actually, and this form of cancer without Herceptin is quite aggressive. So, later this month, I get an echo cardiogram. If it shows worse results, I'll have to delay Herceptin. I'm hoping to get in my last round of regular chemo and then get the echo cardiogram, since I'd have to probably take a break anyway due to surgery, so that might help.


Also got the great news that the blood draw I had done yesterday shows my hemoglobin is now below 8.0, so I got an extra shot today, to hopefully help me produce more red blood cells--Procrit. Not really a fun shot. Ow! And it's still OW!

Check out these potential side effects. I refuse to allow them.

I'm really feeling a little overwhelmed tonight.

Once again, I'm feeling like it is time to quit work...but to what end? To sit around and fret over my health and my husband's job? If I could teach but not grade...teach but not conference....basically, the play part of work, not the work part of work. If I ever win the lottery, I'll hire a teaching assistant.

Wednesday, November 4, 2009

Infusion #5, part 2

Infusion Days are long;however, thanks to steroids, I have not a sleepy bone in my body.

Chemo is working, really really well. However, my body does not like chemo. My hemoglobin is 8.2, which is more than one full point lower than last time, which does not bode well for next time. Bilirubin is up. A couple of other systems aren't doing so well, either. Infusion nurses claimed that they were only willing to infuse me today because my doctor insisted that for me these numbers aren't as bad as they look on paper. Good thing I trust her, because I'm rather attached to my liver, kidneys, pancreas, red blood cells.

At least these side effects only make me more and more exhausted and fatigued. The bone, joint, and muscle pain is projected to be worse this time around, and has started already.

It's sadly ironic that that which cures cancer makes me sicker than I've ever been in my life and may leave me with life-long, life threatening complications, which in and of themselves may shorten my life.

On the bright side, I went to yoga tonight with ever intention of blowing off the practice and just lying in Savasana and listening. But I didn't. I completed the practice and actually started to feel some energy by the midway point. It was a good practice, and I'm happy I sucked it up and did it all.

Tuesday, November 3, 2009

Infusion #5

Even more significant than tomorrow being the fifth of six infusion, it marks the 15th week of treatment.

I've always said I can do anything for 15 weeks, which has enabled me to withstand some pretty strenuous teaching schedules--such as teaching at 8 am and then again at 6 and 7:30 pm. This is not to say that I didn't choose those schedules, but 8 am is NOT an ideal time for me to teach. I am not a morning person.

However, I also believe my internal calendar is set to 15 week blocks...just like the year starts with the academic calendar. When I say, "Next year" I mean late next August not after January 1st.

What this means is that I'm over this chemo shit. I'm over this cancer shit. I'm over being a member of this club. I hit the wall this week. I know I've said this before, but I'm tired of being tired, specifically. I walk around feeling like I could fall asleep at any moment, but then when I try to sleep, it's hard. Yet, getting up each morning is harder and harder. I'm over my legs, hips, knees, ankles and arm hurting. I'm over having to "take something" so that the pain doesn't wake me up and so that I can fall asleep. I'm over having to remember to take something before I get into bed, not to mention trying to decide what and how much pain reliever I should take.

Yet, in three weeks I do this all again.

Plus, no matter how hard I've tried, my syllabus just won't let me put myself in a position where I'm not having conferences with students in the days and week after chemo and I'm madly grading the weekend before, during, and day after. The thought of collecting essay #4 right before my last chemo is overwhelming. Actually, thinking about finishing the semester is overwhelming right now.

The only thing I'm not over is actually being in the classroom actually teaching. I'm really enjoying my students this semester. I think knowing that at any time I could throw in the towel and walk away has been quite liberating in that sense.

I'm also not over making new and deepening old friendships.

But otherwise, if I didn't know I didn't have a choice, I'd be wondering if I can make it through the next five weeks. Not making it isn't an option. I'd like to go into surgery in six weeks with a little more energy, though. I've experienced big rebounds in the past, but not this time around. At this point in the semester, while a strong rebound would be appreciated, I'm normally wiped out, so I can't even imagine the next two weeks, with conferences most every day. I really hope for a rebound after treatment 6. I'd like to feel good before surgery. It only seems fair. Yet, as we all know, life isn't fair.

But enough of this. The chemo is working, I'm managing the side effects well, and so far I've avoided H1N1 or other illness. And I guess that has to be good enough for now.

I do have to say that I couldn't do this without dvr. Just couldn't. My hat is off to anyone who has done this without cable tv, let alone dvr. Being able to sit and watch episode after episode of House has saved me.

Monday, November 2, 2009

Who Knew????

In the past, I've not been highly successful at sending cards to people, even holiday greetings. I buy them; I rarely send them. However, I've ever so much appreciated the cards and greetings and little things people have sent me since July, that I've vowed to do better. In that regard, I've been at Gen's Hallmark twice now within the last week.

Ever tried to find a non-sappy, yet meaningful card for a 16 year old boy? Yeh, not as easy as you might think. What I did discover is that there is now a plethora of card categories ("appropriate for job loss;" "struggling with depression"). As I was searching for one, guess what I found? Yes, leave it to Hallmark. There is an entire section of cards specifically for people with cancer and undergoing treatment. Seriously, I never would have thought to look for a card specifically for someone undergoing cancer treatment.

Who knew? I think I need to spend more time in card shops in the future. I had no idea that I could find cards for people with empty nest syndrome? One thing I do know, there are still too many cards with pictures of puppies and kittens on them.

Saturday, October 31, 2009

Aren't you jealous??

Just think how bedazzling YOUR halloween costume could have been...

They are all different, and chemo brain strikes again...

That last part rhymes is your pronounce "again" with a long a sound, by the way....

When Nathan gets sick, he gets very, very sick. He's had pneumonia more times than I can remember. A few years ago, when the children were stricken with a horrible influenza, Nathan was so sick, I actually took him to the doctor because I was worried. I'm not known for taking my kids to the doctor because I'm worried (and usually I wait too long). At that time, he couldn't sit up in the doctor's office. After every long, intense soccer tournament, Nathan gets sick. If he gets stressed, he shortly thereafter gets sick.

Aidan, on the other hand, has only once even been seen by a doctor when ill because he simply either doesn't get sick or he recovers quickly. When he was five months old, he was hospitalized with croup. At that time, the doctors told us to expect that he'd be in the hospital for 3-5 days. He was released within 14 hours, cough free. Since then, he's not ever been sick enough to warrant being seen by a doctor. When he gets colds, he has a runny nose for 3 days...maybe. That adage of a cold lasting 7 days or a week? Not Aidan's colds. Chicken Pox? He blew through the whole cycle in three, maybe four, days. And that was after multiple exposures to the virus. That horrible flu that laid Nathan out for nearly two weeks a few years ago, made Aidan sorta-miserable for 1.5 days. It was his first experience with a fever. He was 11? A vomiting flu that laid Tynan out for 3 days and Nathan for 3 days....Aidan vomited once and was lethargic for a day. Recently he missed two days of school for a stomach virus...and was perfectly fine on day three, where his brothers moved through it much more slowly...I think Nathan had symptoms for four days and Tynan off and on for longer than that.

Tynan, now, is a mixture of both brothers. He seems to come down with things rather easily, but doesn't stay down for long. However, at times, when he goes down, he goes down hard. He's my strep kid. Neither of the big boys has ever had strep, but Tynan had it multiple times when he was younger. There was one summer when he was sick with strep from May until July, I think. He also gets sinus infections (I'm so happy he's learned to neti, which has pretty much fixed that problem), and his infections linger, and linger, and linger....sometimes. He was the child with the perpetual infection one year....he missed 17 days of school because he kept spiking fevers and was never fever free for 48 hours (that was the year of flu...and the strain the kids had was contagious until fever free for 48 hours). Finally, the doctor ordered an MRI and culture and discovered a little, tiny pocket of sinus infection, that when cultured ended up being an "archaic" strain that responded best to old fashioned penicillin as opposed to the newer antibiotics. So he's a weird one, Tynan is.

Yesterday, the doctor declared that Tynan probably has H1N1, just through process of elimination. He did a rapid flu test, but those give false positives for H1N1 in over 50% of cases, so the negative result, in the face of his symptoms, probably isn't a true negative. Plus, he responded quickly to anti-virals. And he's up and down, down and up. Looks like a raccoon...very pale, very dark circles under his eyes. Incapacitating head aches. Then shortly after, feels OK. Ice cream seems to help.

We've been dosing him with vit. C, vit. D, oscillococcinum, and keeping him pretty much quarantined in the family room. He's not coughing too much. Fever comes and goes, but seems much lower today (I should probably take it at some point). I'm mostly avoiding him, and he me. He hasn't complained about aches today, and he's gotten some wonderful "Daddy time" since Lou is running interference for me.

So, he and I suck down our Tamiflu.

And that chemo brain? I collected essays yesterday and was really intending to get them all graded by Monday, Tuesday at the latest. I do round 5 on Wednesday, and although I don't feel sick until late Friday at the earliest after chemo, I don't focus so well with the steroids I'll start taking Tuesday and feel the effects of until some time Friday. Being cranked on steroids is NOT a good way to approach GSW 1100 essays. Focus is an issue, and one of the other side effects is irritability. I get irritated enough without drug enhanced irritability. 1100 student essays require a special sort of Zen. And my Zen goes far, far away within minutes of my first dose of Decadron. I normally handle Zen and the Art of 1100 Maintenance quite well lately. But not cranked on deccies....

Well, there's an example of chemo brain...I had no intention of writing about Decadron.

What I'd intended to say 120 or so words ago was that I have this stack of essays; I was intending to grade 20 or so today, tomorrow, Monday; I totally blanked on "sterilizing them" which is what I've been doing for several years now (and I've avoided getting sick for quite a few years, since I've started consciously avoiding student germs). So, now I'm two hours behind because I pop them in the over for at least two hours. It may not be a perfect solution, but I really have had fewer "student" illnesses since I've started collecting essays in a box/basket, baking them, and also not letting students use my textbooks (and avoiding touching their books and computers).

Drat. I had such great intentions. Double Drat. Two hours in the oven means I won't get to them before I have to start getting dressed for the Halloween party. I can't believe I totally forgot about this.

Friday, October 30, 2009

Aaaaargh....Good News that changes nothing and bad news that is annoying

When I had my MUGA done, I also had another mammogram for the surgeon. The good news is that my left breast--the bad one--is "clean." It looks healthier in the mammogram than my right breast--the good one--which was given a "cancer free" bill of health last month. Ultimately, this changes nothing. I still will have the surgery and radiation, because cancer is still there, even if it's invisible. Dr. Mohamad thinks that the great response to the chemo is in large part due to the supplements and visualization, so YIPPEE! It's working, and that's encouraging.

So, last round of chemo, I had a horrible time with what I thought was a worsening reaction to Neulasta. Apparently, while Neulasta can cause the type of pain I was experiencing, it's rare for it last as long as it has...basically, I'm still experiencing pain in my knees, hands, ankles, and hips. This is especially apparent when I drive and my ankles, knees, and hips ache and at night, when the pain in my hips and knees wakes me up and interferes with falling asleep.

At the same time, I'm having muscle pain and the sensation of weakness in my one arm, hand, and my legs. There is no weakness; it just feels like there should be weakness. I feel quite a bit of "muscle burn." For instance, while I've been walking quite a bit, I "feel the burn" even before I've gone far and even if I'm walking slowly. My right forearm constantly feels as if I've been squeezing a's tight, tired, and achy.

So, like all good patients, I called the oncologist, and apparently, her guess is that it's the Taxotere, not the Neulasta (or compounded by the Nuelasta). The muscle aches are not generally a side effect of Neulasta, but not unheard of with Taxotere. When I described the joint pain by saying, "It feels like my knees should be swollen, but they aren't" she was clued in. I guess Taxotere side effects sometimes mimic rheumatoid arthritis and fibromyalgia. These effects usually go away within three months of the last Taxotere infusion. Rarely, they last forever. Guess we'll find out.

It is what it is. And so it goes.