I really don't have time for this

That's what I told my oncologist at my appointment on Wednesday when he told me I should have a bone scan.

He also told me that in his 17 years of being an oncologist, he couldn't remember one time somebody had a relapse while still on adjuvent therapy.

Knowing I'm not special enough to be 1 out of 20,000  (my first clue is that I've never won the lottery),  I was consoled by that remark.

Of course, the next logical thought is:  why do I have to have the bone scan at all if it's that rare?

I know the answer.  If you ever had cancer, doctors always have to assume your cancer has returned for the following reasons:

a)  to prevent lawsuits, and
b) to keep their malpractice insurance. 

You know what having a bone scan means though, right?  It means I have to waste my time for what will probably end up being back sprain due to a bad work chair.  Won't that be embarrassing?  I'm such a whiner!

It also means I have to take a day off work.  My oncologist seemed a little skeptical at the idea that I might have the kind of job that you can't easily skip, but it's the truth.  No, I'm not a big important doctor in the business of saving lives, but teachers need paper, and I have the key.

I began thinking I shouldn't have said anything about my back pain at all, but then I remember - that's the way I felt when I found the lump.  I kept it on the DL for months.

So, this time,  I did the grown-up thing and complained.  Better safe than sorry.  Being a grown-up has some really dumb consequences, although I never imagined radioactive dye to be one of them.

He told me to schedule an appointment to see him at my next herceptin for the results.

"Wait, that's three weeks from now.  Can't you just call me?"

"I don't like to call patients on the phone in case I have to give them bad news."

"Don't worry, I can handle bad news a lot better than I can waiting."

We imaginative ADD types are not good at kicking back and hanging out while test results sit for weeks in a file somewhere waiting to be plucked.  We want our chicken feathers immediately.  I know now this back pain is nothing, but two weeks after my bone scan, my funeral will be planned, my belongings given away, and I'll have picked out a new wife for my husband.

He said, "Okay, call me the day after the results."

So, I will.

It's a big time suck, but the game must be played.



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Riding the Cancer Roller Coaster

Because women with  invasive cancer never know they are cured until they die of something else, we have to learn how to handle the uncertainty this disease can bring.  We all have a tendency to think that a bruise is a sign of impending doom.

For most of us, our initial treatment will be all we ever need. Unfortunately, a certain percentage will face the disease again, either with a local recurrence or a metastatic one.  A diagnosis of breast cancer means you must live with the sword of Damocles hanging over you.  It may be swaying very high up, but it's forever there.

For well over three weeks, I have had a burning, aching pain in my lower left side/back that never goes away. It radiates down into my butt/hip. It may be spinal or it may be my hip bone or it may be muscle.   I know it's not tamoxifen-related, because that bone pain is pretty diffuse and this is specific and one-sided.  Pain medicine only helps briefly and then it comes back.

Naturally, the thought crossed my mind that the cancer has spread to my spine or hip. And, unlike the last scare I had in mid-July when I was called back for a bad mammogram after thinking everything was fine, this one is generated by my own imagination.

Here is the conversation I (and at some point, most cancer patients) have with themselves about these situations.

Emotion: My back hurts. OMG, it's spread to the spine or hip. I have metastatic cancer!

Intellect: Everybody gets these aches. You are 52 for crissakes and have been through a lot. They go away.

Emotion: It's mets! I have mets!

Intellect: You have been working 9-10 hour days, and because of the expander and hot flashes, have not been sleeping well. You are in a new office in an old chair. It's physical circumstances causing your pain. Don't be hysterical.

Emotion: It's mets! I have mets! I'm going to have to do treatment forever!  I'm going to have to do radiation!  

Intellect: Be logical!  You are still in treatment. They cut out the cancer, they killed any remaining cancer cells with chemo, and you are faithfully taking tamoxifen and herceptin to prevent recurrance The odds are excellent that you are fine. It would be a rare cancer patient who had disease progression at this stage.

Emotion: I know you are right, but it hurts. I only had a 2.6% chance of getting cancer last time, and only 20% of that small percentage be HER2+. Odds suck for me already.   It's mets!  I'm never going to see my grandchildren!

Intellect: Three weeks ago when the pain started,  you spent the entire weekend cleaning your kitchen. You pulled everything out of the cabinets, you bought containers for the pantry, you climbed on ladders to clean the top of the fridge, you even did a paint touch up. You probably pulled a muscle.

Emotion: I had cancer. It's not muscle, it's spread! (But doesn't the kitchen look nice?)

Intellect: Listen to me!.  You have had a very large, very hard plastic lump in your right breast for almost a year. You are a stomach sleeper. You probably are sleeping in awkward positions and straining your back. Your body has also changed and you may have adjustment strain.

Emotion: Yes, I know you are right. BUT IT'S METS!

Intellect, sighing: It's not Mets.

Logic and facts always win over emotion. (Unless I'm pissed off.  Then emotion wins.)  But, I learned a valuable lesson when I first found my cancer. Logic said it was just another cyst. Logic told me I had no risk factors. Logic told me that 80% of breast lumps are benign. I listened to logic for months and delayed the diagnosis.  Unfortunately, it turned out that logic failed me.

So, this time, despite my desire to ignore what is likely a muscle strain, and hope it goes away, I will listen to the illogical, emotional side and mention it to the doctor this Wednesday. He may order scans, or he may say it's nothing and let's wait and see.  I hope it's the latter as I have no time for more tests (I already have a MUGA this week), and I know the results will come back negative. I will have wasted everybody's time. But this time, I won't ignore it.

A lot of cancer patients institute the "two week rule" for contacting doctors. We know we are over-sensitive to aches and pains, and that our minds automatically run to disease progression. We also know we are normal people who get normal pains. On the other hand, we know invasive breast cancer is fickle. You may be cured.   It may return in five months, five years, or twenty-five years.  To cope with a mind that wants to run wild, we learn to wait.  It's been over three weeks now, so it's time to confess.

I imagine as you get closer to the magic five year mark, where the odds of your cancer returning go down, it becomes much easier to relax when you get these normal aches and pains.

Until then, finding the balance between your emotions and your intellect is the key to the recovery process.

I'm not sure I'm there yet, but I'm trying.

Curing Chemo Curl

September 31, I'll be six months post-chemo. My hair is almost three inches long. The color is gray, but it's a pretty, silvery gray. I'm not used to it yet - I still don't know who that woman is when catching a glimpse of myself in a store window. I'm not certain I'll keep it this color or not, but for now the color wasn't my main concern.

The curl was.

Unfortunately, I have hit the point where the famous and dreaded chemo curl reared its ugly head, pun intended. The curl first started around the bottom, and then like a fungus, began creeping up. It got to the point where it was very wavy on the top and super curly below the ears. Had I kept my original red dye-job, I would have been mistaken for Bozo the Clown's sister. As it was, I was on my way to looking like a sheep. Or, Betty White.

Each morning I woke up to a head full of dandelion frizz, so I'd mist it and use spiking glue to try and tame it.

I'm a woman. It doesn't matter what I've been through. It doesn't matter that estrogen is not allowed in my body anymore. I'm a female, and that means I'm genetically incapable of liking my hair. The fact that I had spent six months this year bald means nothing in the face of that truth.

Photos of women with short, cute, spiky straight pixie cuts kept finding their ways into my magazines, and into my consciousness.

So, I decided to relax it. I know that my African American sisters have had much success with chemical straighteners, and my own sister has done the Brazilian and Japanese straightening treatments - so I figured it was my turn.

I made an appointment for Friday, excited at the thought of smooth, silky hair so straight that it would appear longer.  And, that was a big part of my desire to straighten it - I wanted bangs.  The longer my hair got, the more it curled and it wasn't ever going to cover my forehead, I felt.

Well, you can guess what happened. I got the exact opposite of what I'd hoped for. I have thin, impossible to style hair now which sadly is still curly on the bottom. My scalp feels scarred and the hair feels like dental floss. I used hair glue before to contain the curls - now have to practically pour it on my head so I don't look 90 years old with puffy sections sticking out everywhere. The straight hair is aging, doesn't fit my face, and weirdly, it looks shorter than when it was curly. If I don't slick it back, it puffs out in strange and straw-like ways.

One of the worst parts is that it smells. Horrible. Like burnt microwave popcorn. No amount of washing seems to get rid of that scent. It fills my tiny office and is giving me a headache.

Ladies, let this be a lesson to you. Chemo curl is better than starting all over with your hair. Chemo curl will go away on its own. Be patient!

Let me tell you this as well. A bad hair day after you have been bald is a much worse feeling that before. It seems so unfair.

Here are some photos for you:

See the Bozo curls near the ears?  No flatiron was strong enough to flatten it.

I've glued it to my head to prevent it from sticking straight out. Even so, you can see on the right temple where it does anyway

Not so bad but this is after a lot of work. The curls were there even under water.

Oh no, still not straight on the bottom.

I liked it much better curly.

Hmmm.....I wonder if I should do a perm?



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Pink Ribbon Dot Org

A few days ago, I opened my email inbox and saw a ton of email. I've been online since about 1990 but I still get happy to see an inbox full of email (that isn't spam).

Now that it is almost Pink October, there are many companies wanting me to do giveaways in exchange for publicity. One even wants to interview me - on camera.

Aside from being flattered that somebody thinks my blog is popular enough to host giveaways that will help them in some way, I am not sure what to think about this situation.

You already know my conflicted feelings over Pink October. Do I post the giveaways and let my loyal readers have a chance at free goodies? In doing so, will I be furthering the Pink October madness? Will that be selling my soul?

And....do I really care that much?

I'm not sure I do.

I've sort of felt outside of this entire cancer experience anyway, as loyal blog readers will know. I don't feel that it has elevated me, or that I'm part of something special or that it defines me in any way. I'm not in a battle, or even courageous. I have a disease, and pretty much my "battle" is showing up on time to doctor's appointments. It takes a lot more courage to drive on California's freeways than it does to sit in a barcalounger in an infusion room playing Words with Friends for five hours.

Anyway, one of those emails was from a woman, Gayle Sulik, who has her own blog, and who describes herself as a medical sociologist. She wanted to share a post she wrote with me before she uploaded it. Which, I thought, was very nice.

Also very nice was the piece she wrote. I think she captured my bemusement at being drafted into this world of the Pink Ribbon quite nicely, and used my stories to highlight the pressures some of us feel to become part of the Cancer Culture - pressures which are very real. Like any culture, the cancer community has rules and norms and a language of its own. Many women embrace it wholeheartedly. Others, like me, step back a ways, uneasy at being part of a club that they didn't ask to join and frustrated at the rules they are supposed to follow anyway.

She also stole my thunder by posting an article on that old "1 in 8" statistic that I'd been working on. I suggest you head on over there and browse.

PinkRibbon.org






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Pink Starts Early

I still don't really know how I feel about Pink October. I find part of it manipulative. I also know that good money is donated to research - research that doesn't only benefit breast cancer patients. I find many of the advertisements tacky and pretty clearly designed only to encourage people to buy some crap they wouldn't normally to "help the cause." I also find it a brilliant marketing plan and applaud Komen for their success.

Heck, it's almost cool to have breast cancer these days.

It'll always be a bittersweet month for me though - I had my mastectomy last October, and so now I will forever be reminded of that fact by Pink October. Assuming, of course, one ever forgets.

I certainly won't this year, since I still have the gawd-awful expander in. I'm reminded every time I move my arm or move in bed.

However I feel about Breast Cancer Awareness month, however you feel about it, there is one thing I know: it seems to be starting earlier and earlier each year. Just like Christmas. Stores put Christmas decorations out before Halloween, and it's starting to happen with breast cancer awareness items.

Yes, it's pinking up everywhere. In magazines, on shelves, on soup cans.....and oh, by the way - on my blog.

You see, if I post the banner ad below, Dannon will - after reviewing my blog with their legal team - link back to me and feature my blog on their site.

I like that idea. I like yogurt. I support breast cancer research and awareness. So, I'm doing it. Feel free to click if you are so inclined, and ignore if you are also inclined.



Now, I just have to go through my blog and make sure that Dannon legal doesn't get upset by anything I wrote. I'm pretty sure I never dissed their yogurt. In fact, I eat it. A lot. Yogurt and fruit are my daily breakfast.

I love yogurt. I really, really do. Blueberry is my favorite, followed by Peach.

But, Doctor...I Hate Brown Nosing.

Top Ten Things to Know About Recovering from Breast Cancer

• You will no longer by shy about exposing your chest. If a doctor asks you to undress, you will, right in front of him, no gown necessary. Oops. 


• Your hugging technique will change. You'll find yourself turning your body to hug people sideways, so that the rock of an expander isn't pushing into them. Unfortunately, the time when you least want to hug people is the time when they most want to hug you, so you'll have no choice but to learn the technique.


•  Many people know about "chemo curl." (Your formerly straight hair grows back curly after chemotherapy.) However, you may not know this: the carpet no longer matches the drapes. After chemo, the hair on your head grows back curly. The hair in the lower forty grows back straight.


• Chemo-brain is real. You will start browning meat for dinner, go to the pantry to get a can of beef broth, forget what you wanted to get, think of something to look up and only when the house fills with smoke will you remember what you were originally doing. This behavior is not confined to the home. My office is a mess, with handwritten notes everywhere, saying things like "order paper" and "pizza on Friday" and "strategic plan." If I don't write something down immediately, it's gone forever.


• Your body loses all its ability to control temperature. You learn to dress in layers and are chronically taking off sweaters and putting them back on. You'll have a heater and a fan on your desk and alternate using them all day long. All those notes you need to write things down as a substitute for your lost memory? Invest in paperweights!


• You will think everybody who is bald or has very short hair just finished chemo.


•  People who need to see your driver's license will give it and you a good once-over. You will get in the habit of saying "Yes, I changed my hair."


•  At some point, you'll get a headache, or sleep wrong and get a stiff neck, or feel a strange ache. You no longer will ignore it, thinking it's one of those things. Your first thought will be "has cancer spread to my brain? is it in my bones?" This will even happen if you skin your shin or stub your toe or get the flu. All pains lead to cancer.


• You will take the month of October personally


• You will no longer worry about getting old.

Better late than never - winner announced

One thing I'm trying to learn as a result of breast cancer is not to be so ambitious and such a perfectionist.

People who have seen my housekeeping skills and know what I do for a living will be astounded at the thought that I consider myself an ambitious perfectionist, but in some areas, I am.

Here's an example: to announce the winner of Diana's book, I was going to record a video, as I did before with my last contest. I was going to pull the names out of something clever and post it on YouTube. That way you could also see my hair growth.

But, I'm still working long hours, not feeling particularly well, and am tired. I promised myself I'd do it yesterday but I forgot I had my herceptin appointment, so I didn't get home until after 6:00. I decided today was the day no matter what, but I got home late again. Before I remembered, I'd put on comfy house clothes, and a perfectionist like me would have to change to be "on camera." I also have a blemish that I would need to cover with makeup. The light is getting dark, so I'd need to find suitable light, interrupt my son's homework, find something clever to pull the names out of, upload it and edit it and make captions about the hair.....

......do you see what I do to myself?

Tomorrow is my anniversary so I knew I wouldn't do it then.

I started to feel guilty and normally I would have spiraled down into a guilt/avoidance behavior that would end up with me never posting the winner, and maybe taking down the blog because I couldn't do it the way I had envisioned.

The one thing cancer has done for me is make me more aware of my faults and strengths, and given me the impetus to overcome them.

So, the answer is simple: downsize my idea.

How?

I looked across the table to where my son is sitting here doing his math homework.

Math......hmmm.....maybe I can have him pick a number and draw the winner that way. The poster who corresponds to the number he picks wins. I asked him to pick a number between 1 and 10. He picked six, so I counted down to post six, removing duplicates, and came up with a winner.

And, it happens to be my cousin, Daryl. Now, I realize that smacks of favoritism, but you'll have to trust me that the choice was fair and square. If you've been reading my blog since it began, I hope you have the sense that I'm not a cheater. Life is not fair - but when it can be, it should be.

Despite Daryl being my cousin, we are one of those families who loves each other but doesn't stay in touch very often. So, Daryl, I don't think I have your address since you moved. If I do, it's not in my phone.

Email me with it, and I'll contact the person who will send you the book.

I'll still upload a video of the hair at some point. The chemo curl is intense. I'm well on my way to sheepdom.