Tuesday, August 14, 2012

What kind of timing is this?

I started Abraxane in March of this year; my fifth chemo.

Most metastatic patients lose their hair over and over.  This is because some chemos cause hair loss and some don't.  Your doctor puts you on one that doesn't, your hair grows back and you don't look sick.  That chemo eventually fails and he tries a new one that does cause hair loss.   And, that's when people think of you as sick - when you are bald.  That's when the questions start, and the pity.  People are very visual.

For you, out come the scarves, the wigs, the hats.

I know many people who have lost their hair more than four times.

Abraxane causes hair loss in 96% of people so when I started it,  I dusted off the scarves and got a new wig. I was ready for my second hair loss. I'd  prepared mentally.  I was leaving my job, I was going to be home, so who really cares?  I could wear a wig for special occasions and be bald at home.  There wouldn't be that many stares, that many questions this time as I wouldn't be so public.

And, indeed, my hair began falling out.  But slowly.  A few hairs at a time.  Not in huge clumps like the last time.  I'd run my hand through my hair and get one or two hairs each time, not fifty.  I was pleased.

As time went by, it got thin enough for me to do some strategic covering.  I wore headbands to cover up the balding areas and pull my hair around it so it looked thick in other places.  Then my stylist cut it so that you couldn't even tell it was thin. She said she's seen people without cancer who just naturally have hair that thin -  because mine is so naturally thick it's new thinness looked odd to me.

I've been wig-less and scarf-less ever since.

After a couple of months on the drug, my hair stopped falling out entirely.  I was astonished.  I would be one of the 4% who gets to keep their hair on Abraxane.

At least one tiny thing went right.

I did lose my lashes and my eyebrows.  The brows are easy to draw in, the lashes - well, I've never mastered  false eyelashes.  I've worn them to a few parties and they usually end up on my cheeks before the night is over.  It also doesn't help that this chemo makes your eyes and nose run.   So, I try some waterproof liner or mostly, just leave it alone.  If you stood next to me in the grocery story, you would not think, "that lady has cancer."

And, now, I get to take a chemo break.  My last chemo was July 25th,  and I won't start it up until my next scan in October.  Suddenly not tied to weekly doctor's appointments, our family is taking a very small vacation, to Arizona.  We were going to pretend cancer is not in our lives, that all was normal, that we were a normal family doing normal things.

Before you tell me, I know it's hot there.  It's hot where we are too.  It was 111 yesterday, so we are used to it.    I like Arizona - my husband and I went there on our tenth anniversary, and I want my son to see it too.  Saguaro cacti, red rock formations - it's so beautiful.   It was where my husband and I had planned to retire, back when we made plans like that.

Anyway, we are staying in a resort with lots of pools and waterfalls and even a swim-up restaurant. A place a 15 year old will like, and a place mom can rest too, and a place where we don't have to think about this disease that has taken over our lives.

Two days ago, and almost three weeks after my last chemo, my hair has started coming out.  This time, it's for real.  In big clumps.  Hair is everywhere and if I touch my hair, if I wash it, I have in the palm and in my fingers, not four hairs, but fifty.

Hair is all over my keyboard, all over my bathroom floor, all over my couch and pillow. It will be gone in days.

That means, I'll be bald for my trip to Arizona.  And, the weather is forecast to be in the hundreds, which is way too hot for a wig, which are not for swimming anyway.

This was supposed to be our "no cancer" vacation, and now I'll be obviously sick to all who see me, or miserably hot if I want to conceal.

I kept my hair for four months on Abraxane, and it falls out after I stop the drug. I'm on a chemo break, yet out come the scarves and the hats.

Life, somehow, is playing a crazy joke on me.

But right now,  I'm not laughing.




Anne Wentworth, you won the book in the contest I had recently.  Please email me at butdoctorihatepink At gmail DOT com so that I can get your address.  If you don't contact me within one month of the contest end, I will have to pull a new winner.  Thank you!





13 comments:

  1. Get a badass, temporary tatoo on your head. No one needs to know what kind of asskicker you are!

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  2. The pain, the nausea, the insomnia...nothing has been as worse as losing my hair. I'm on my 3rd hair loss.

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  3. so sorry to hear about this turn of events!

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  4. I am one ugly bald lady. Many look good bald, but not me. My acne scars, my crooked teeth, my weak chin - all are highlighted when I'm bald. Some folks just need hair and I'm one of them.

    A tat on me, while I like the on others, would look laughable. I went to walmart and stocked up on their dollar bandanas but they don't have brown. I wear brown a lot, it's weird. I do have a brown and white polka dot silk scarf that goes with a lot. The one good thing about having a tiny head is the scarves that might not cover others cover me. :) On the other hand, the big floppy hats are too big without a cushion. I should get one of those cooling headband things from TLC.

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  5. I did the Penguin Cold caps. I was lucky and only needed 6 rounds of chemo, but they worked great for me. TCH x 6 and still had all my (head) hair. It was great to have some control with that.

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  6. That totally sucks – I’m very sorry to hear you hair started falling out. It’s bizarre for sure and understandably frustrating after so long with it staying. Maybe you’ll need to get yourself a very large and dramatic hat so people say, “look there’s the hat lady” as opposed to “oh, she looks sick.” Couple that with large dark sunglasses and they might even whisper “movie star”.

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  7. Ann, I'm sorry your hair is falling out yet again. Always a reminder of cancer. Nevertheless, I hope you enjoy your vacation; you so deserve a break from chemo. You may need to protect your head from the sun, so maybe a headscarf or something?

    Have a wonderful time with your family.

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  8. Ann,

    Yes, cancer is the notorious plan changer. It sucks you are losing your hair now. I'm sorry about the timing. Despite being bald, I hope you have a wonderful time in Arizona and enjoy the break. I love it there too. I guess you'll have to go with the sunhats, scarves & bandannas when you want protection from the sun. I know you didn't want to be bald while swimming though. I guess all I can say, is enjoy yourself and let the people stare or not stare. Have a good time, Ann.

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  9. Ann, I think I was just projecting. I really want to tatoo my head and go out in public, but I'm not brave enough. I've been bald for almost a year now and tired of scarves and hats. I finally broke down and bought a wig last week. They have changed in the past 10 years. I was pleased at how light and comfortable it is. And I'm getting tons of compliments (so I must have looked really bad)! Anyway, I didn't want you to think I was being insensitive. I do understand and I hope you have a great time in spite of everything.

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  10. Oh LaVonda, I don't think you were being insensitive! Never crossed my mind. Here' the thing - I'm an ugly bald woman. It is just a fact. A few woman look good bald but some don't. A tat is not going to make me look better, just weirder.

    I'm creative with scarves, especially in the winter when you can wear long ones and tie them into cool flowers and stuff. But, I have a tiny tiny face and head and I just look odd with scarves and no hair. I didn't want to swim or be at the pool like this but it doesn't matter. It is my behavior that will make the trip, not my hair.

    As long as I can get out of bed, walk enough to do the stuff my son wants to do and have a fun time, that's all that matters. I didn't want him subjected to stares and questions but maybe he won't be.

    Who knows, maybe the hotel will see my cancer state and take pity on me and upgrade me, lol. :)

    Not looking forward to my first flights since they starting touching your body tho....

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  11. No worries Ann. You've got the right attitude.

    And I'm sure your son does not care one bit about how you look. I go to the movies a lot with one of my sons and I'm always asking him if he's embarrassed to be seen with me. He even pushed me in a wheelchair once, through the mall and into the theater. The only time I ever embarrassed him is one time in WalMart I had a long string of toilet paper hanging out the back of my pants. Let me know if anyone ever sees a video of that on YouTube. Hahaha, the people of WalMart!

    I say if you've got a cancer card, why not use it. Nothing wrong with a few upgrades.

    And, last but not least, call me crazy but when I went to Hawaii last year, I kind of enjoyed the pat downs. :D

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  12. You do not HAVE to lose your hair...
    Hello, my name is Ari, I am a survivor (so far…) of two cancers, a widower of a cancer victim (now re-married..) and is dedicated to fighting cancer, and helping others do so.
    I lived in Toronto, Canada (my family is in southern California), and last year, after marriage, I moved to the Philippines. I am majority owner of a Dialysis clinic, and built a unique cancer clinic, the one I dreamt of having when my first wife was struggling. I took her to Mexico clinics twice, for treatments (which were very successful!), talked to dozens of physicians, and always found lack of properly equipped clinics, which could do a lot better if they were.
    Along the way, I have gained insight of how proper Hyperthermia should be applied. This is a method which doubles the success rate of conventional therapies, and alternative ones as well, provided it is done properly. I have purchased the most powerful device for this, and added two other types of devices, which when applied in the right order, prevent a process of DE-sensitizing of cancer cells to the effects of specific frequency hyperthermia. We also do mild whole body hyperthermia in order to strengthen the immune system (with no side effects),and help reach the right thermo-therapeutic levels within the tumour.(the right temperature simply destroys the tumour…). There are also other aspects to this, biological ones, which for lack of commercial incentive (UN-patentable..) is not pursued by multinational pharmaceutical corporations which control all medical research in the field.
    I also introduced other forms of immunotherapy, and alternative cytotoxic elements, such as Helixor, a mistletoe extract, which has three times better success rate then most chemo agents, without the side effects.
    I can give information about many clinics I learned about, (mainly in Mexico and Germany)
    If you are interested in getting free advice, please feel free to contact me, @ advancedcancertherapies@yahoo.com
    Thanks,
    Ari Idan

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  13. Sorry this has happened to you, Ann. Can you wear a bathing cap while swimming? I know they can be uncomfortable if they stretch too much, but it's a thought. Cancer sucks. No two ways about it. Take good care, and enjoy your vacay to the fullest of your heart. xxx

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