April 10, 2009
Fifteen days ago I went to my doctor to have her look at a dimple on my breast. I just thought it was merely a sign of aging...like a wrinkle. I had been ignoring it for over a year. I expected a knowing smile, simple explanation and the proverbial pat on the head as I went out the door. What I got was my first appointment for a mammogram. Since then I've been squished, scanned, poked, sliced, and scanned again.
What they can definitely tell me is that I have invasive ductal carcinoma. They can also tell me that I'm too young to be diagnosed with this and that I will definitely have to be artificially induced into early menopause to minimize further occurrences. What they cannot tell me is what stage I'm in or how big it is. So I have to be scanned, poked and sliced some more next week. Each day waiting for test results feels like five. But today is good because I don't have ANY doctors appointments and I survived my MRI !!!!
Telling the Kids
April 11, 2009
When the pathologist telephoned with the results of my biopsy, he ended the call with an apology. “I’m sorry,” he said. I wondered how many times a day he had to make phone calls that ended in “I’m sorry”. After all, hundreds of people are diagnosed with cancer every day. I started feeling sorry for him. But then I began to think about my children. How was I going to tell them? Give it to them straight or put it off as long as possible? Certainly, I would need more than an “I’m sorry” to get through this one. Within five minutes I was on the phone with my mother-in-law, a certified grief counselor. Needless to say, my question/revelation caught her off guard, but eventually she was able to gather her thoughts and give me some valuable advice. Basically she said that the children should not be lied to in any way. They’ll find out sooner of later, be it through overheard conversations, or just picking up on little nuances. But, only give them the information that is pertinent to them, those things that will directly affect their lives. Don’t overwhelm them with every minute detail.
So we picked a Monday night to tell them and invited my parents to be there. My parents knew what was going on and were ready to be there for extra support.
I mulled over what to say for days, but still found myself at a loss come the big night. Then the miracle happened. Every night as a family we read a chapter from the scriptures. When we opened our books to where we had left off, we all discovered to our chagrin that we were on one of the longest chapters in the book, not to mention one of the most challenging to comprehend. As the others began to moan, I began to grin.
Somehow, we made it through the entire chapter and at the end; we had the perfect chance to discuss how our family just did something really hard. We talked about how good it felt to have that long chapter behind us and how it wasn’t as bad as we thought it would be. The children, ages 9-17, then got to hear the word “cancer” in relation to their mom for the first time, and that wasn't easy. But then they learned that cancer doesn’t have to mean dying, sometimes it just means that, for a little while, life would be challenging and unpleasant. But that was ok…because we had just found out that together, our family could do such things.
It was the best of times, it was the worst of times...it was
an MRI
April 13, 2009
I'm sure my joy was intensified knowing that by having this MRI, there was a greater chance that my surgeon would be able to find a way to remove my tumor without removing my entire breast. With surgery scheduled for this Friday the 17th, I was finally starting to feel some relief that we were at last on our way to recovery. Imagine my disappointment when the MRI tech called me the following day to tell me that something went wrong with the imaging on my scan and that I was going to have to do it all over again AND that is was possible that my surgery would have to be postponed for a week!
I'm so frustrated! I just want to get this behind me and get on with my life. Maybe in a sarcastic twisted way, that's why they call sick people "patients".
No Words
April 15, 2009
Last night, I fear in the pouring rain, someone came by and planted the most precious, pretty, little pansies in my garden. Act of love? Yes...but to me, it's a miracle. It's a miracle that God was able to send someone on such a personal errand (my gardens mean so much to me) so that today..by far the worst day of this whole ordeal yet....I would have cheerful little flower faces smiling up at me when I came home. Thank you.
New Perspective
For so many years I've been at a loss as how to help someone I care about who is suddenly facing
major, life-changing obstacles. I usually let my fear of looking stupid (i.e. showing up on the doorstep with the sixth frozen lasagna they have received in three days), to gradually talk me out of doing anything. With the outpouring of love and concern we've felt this week, I have gained new insight into how I would answer the question "what can we do to help". Hopefully after I take care of my cancer, I will be able to use my new perspective to be a better friend and neighbor. Here are some thoughts I've had and some that I've read (while sitting in waiting rooms, of course).
Don't ask, just do. If there is an obvious need, like a filthy car or a lawn that needs mowing just show up and do it. Asking often puts an unnecessary burden of decision on the recipient.
Smaller is better. The less grand the act of kindness is, the better. Some examples are:
- A friendly note or email of encouragement
- A prayer in someone's behalf, especially on a day of treatment or testing (yes, they WILL feel it).
- Taking their child to the orthodontist, basketball practice, youth group, etc.
- Loan them a favorite DVD to watch (preferably uplifting, comedy).
- Bring a small food gift. Large, full course meals can add up to lots of leftovers. Sometimes appetites are decreased when dealing with stress. A loaf of bread or a fruit salad provides needed nourishment and are a ray of relief anytime.
- Be a good listener and confidante. Everyone says that one of the biggest blessings is someone trustworthy and caring to talk to.
- Distract the spouse or children once in while with something fun like flying kites, going to the dollar show, or overnight camping (contingent on how long the patient can be left alone). They will appreciate a break from the "world of the oppressed" and any reminder that life will be normal again someday.
- Don’t be a messenger of doom and gloom. Okay you had a cousin that had the same condition and passed away as a result. This is not the time to share this story. Instead be positive and encouraging no matter the situation.
- Don't take it personally if your phone calls are not returned. Sometimes it's hard to reciprocate when you're emotionally tapped out. The consistent friend, even when it seems to turn into a one-way relationship, is the true friend.
We will never forget all that has been done, said, and sacrificed for us already. Everything has helped. Everything.
Anesthesia, here I come!
April 16, 2009
My trip down MRI lane revealed a mass considerably larger than anyone expected. Quicker, more aggressive action is the new plan. So tomorrow I will go to the hospital to have a cathiport installed in preparation for Wednesday's first delicious dose of chemotherapy! Yum yum.....gimme some o' dat poison! Forgive me if I seem callous.....the crying gets old after a while.
My daughter wants to hold down the fort by herself. She's totally capable...but what mom wouldn't worry???
If I cowgirl up enough after the surgery, my dad is giving me his ticket to see "Wicked" that night. Cool or what!?
A Whole New World
April 21, 2009
Cancer is like a passport to a whole new world. Not like Aladdin's "shining, shimmering, splendid" whole new world, but more like Star Trek's "resistance is futile" whole new world.
In my old world, I didn't have anything implanted in my neck to provide direct access my jugular vein. Nothing. I didn't have to use a special bathroom, and flush twice, because my urine was radioactive. I NEVER went to church on pain killers, just to find out that after sitting still for three hours with pain killers in your system, you get rather stoned ( I guess that was kind of like a magic carpet ride). In my old world, I didn't spend entire days in manic cleaning fits, cloroxing everything in sight in preparation for tomorrow's chemotherapy sickness.
Not that it's all bad. In my old world, I also never got surprise tickets to see Broadway musicals like "Wicked". I sat in awe for the first ten minutes of the show, utterly amazed that I was there. I finally had to tell myself to snap out of it, or I'd miss the whole thing!
My new world also includes MASSIVE doses of friendship, love and support, none of which I feel worthy of. After wondering to myself dozens of times what I had done to deserve the kind of compassion I have been receiving from my friends and family, it finally occurred to me: " It's not about what I've done; it's about who they are."
Tomorrow will undoubtedly bring another day of "whole-new-world-ness" and I'm pretty sure it won't include any cute little monkeys or Robin Williams, but that'll be ok, because what my new world does have is better..... Christians.
First Chemo Session
April 24, 2009
Chemotherapy proved to be much more exciting than I had anticipated...six hours more exciting to be exact. The actual therapy itself usually consists of an hour in a chair with a needle in your vein. Done. But in my case, there arose some concerns over the results of my PET/CT scan, which needed to be resolved before we did anything.
Our worst fear, that the cancer had spread to my lungs, was the first words that popped out of my doctors mouth. Ten spots. Inoperable. However, the befuddling thing, to him and three other experts, was that none of those spots found on my PET scan showed up on my CT scan. In his words "an anomaly... they've never seen anything like it."
Long story short...all we can do right now is treat the breast cancer as planned. Fortunately, the chemo regiment is the same for breast cancer and lung cancer so we've essentially got all the bases covered either way. They will order another PET scan down the road to see if my lung spots are still there. I guess that's how you treat an anomaly. The good news...we all feel so at peace with it. My doctor, my Markie and I. The PET scan guy isn't so tickled, but we'll deal with him and his isotropes later.
Ready or Not
Which was it? The first or the second? Maybe the third. I don't remember... but I know it was way up there on the list of initial reactions to my cancer diagnosis: I'm gonna be bald!
Like most everything else cancer-ish, you really don't dwell on it that long, if at all. Denial is readily accessible and easily applied. Why waste such a gift? Why not go shopping instead? It's easier to think "I'm going to the mall and I might have long red hair when I come out" than it is to think "Oh my gosh! I'm gonna look like Yoda!"
So...I have collected three hats, and two wigs and not a moment too soon. It started to fall out Sunday. I could let it fall for a few days before anyone would notice, but it's hard to do your hair in the morning when you have to stop three times to clean the little bear cub out of your brush. Part of me wants to shave it off tonight and get it over with....but I'm not sure I'm ready. (or that I ever will be...)
Anyway....just have to say.....I'm a vain woman...and this is gonna stink!
We Can Fly!
Quite recently I won an all-expense paid trip to a Disneyland resort on the radio. What initially felt like a terrific stroke of luck prior to my diagnosis now feels like the universe's way of apologizing for the tumor, but either way...I'll take it! My nurses, on the other-hand, weren't so happy to learn that we were planning on driving there considering all the side effects and complications that frequently attend chemo patients. Mark listened to their concerns and became burdened with worry, but quickly bit the bullet and started doing the next right thing: Find the money for airfare and get me on a plane.
Somehow....word got to his brother (who we have learned has more frequent flyer miles than Tinkerbell has pixie dust) and as of this morning, Mark and I have tickets to fly together to Anaheim!
We're assuming, this same magic will transform my mother-in-law into Mary Poppins, as she now has the duty of driving all our children down there by herself. They are rather good children, and she is "practically perfect in every way"....so what could go wrong?
Cancer sure has a way of making everything harder....but also of bringing out the best in us.
Disney
April 29, 2009
I'm sitting in a beautifully appointed hotel room, overlooking.....trees. Lots and lots of trees with lots and lots of birds. Beautiful. Beneath those trees is Disney's Grizzly River Rafting ride. Right now, if I didn't know any better, I could think I was in a mountain lodge, listening to a majestic river running by. In a couple hours, when the park actually opens and people start screaming on that river, in regular, predictable intervals, it will sound more like I'm next to a natural disaster, or perhaps.....a Disney Theme Park.
Yesterday, day one on my motorized scooter, was bitter sweet. Getting to zoom to the front of every line, as prescribed by the park's disability policy, sure changes your Disney experience. Stress is gone. Everyone knows they'll get to ride what they want to ride and when they want to ride it! Of course, as happy as that makes you feel, it never leaves your mind that you're also first in line for other things; things like pain shooting up your femur every time you stand, waves of nausea the instant your medication wears off, and heartburn from taking all the other stuff. Without the chair, I would have probably made it about 90 minutes in the park, with the rest of the day spent on Mr. Oxycodone's Wild Ride.
So, I'm a more humbler Mouseketeer now. I used to be impatient with people in personal wheeled vehicles....they always went so slow. But now I understand that slow means you don't run over people. That's a good thing. (not running into things is a good thing too.... especially the docking fence at "Small World"... going full throttle....it's not such a small world anymore when hundreds of people are wondering what's wrong with you....including the girl with the microphone...maybe she didn't know it was on)
To all those people I bypassed yesterday and will bypass today, who are tired, who have whinny little kids, who would like to go to the front of the line too.....I say this: I will GLADLY stand in line for you for a WEEK if you will go through chemotherapy for me once.
I've thought about it long, and have decided in this blog, that I'll spare you the gory details of all the side effects of having World War III inside my body. It would be too much like sitting down and reading over all the bad skits that didn't make it on SNL during one of their bad seasons. There's just some stuff left better unknown. But I will tell you this, to quote my friend Wendy, "cancer stinketh"!
Now they've turned on the lyrical, gentle country guitar background music in the park. I'm liking this. Anyone for another great day at Disney?!
Don't Look Down
May 5, 2009
Last night while I was helping my daughter with her homework, I looked down at her worksheet and saw some of my hair laying on it that hadn't been there two seconds ago. I decided it was time. So for family home evening, instead of playing 'Balderdash' or 'Sorry', we played 'Sorry You're Bald'.
I thought the kids would find this quite entertaining, but they were actually rather somber. No one wanted a turn buzzing mom's head. We stopped shaving at mohawk stage and tried to tease it up for a picture, but every time we pulled a spike up to rat and spray it, it just came out in our hands.
Everything was going well, I understood what had to be done...just like every other weird thing I've been through since March 27th. But then I looked down. I saw ALL my beautiful hair laying in a pile on the floor. Have you ever considered how much time and emotional energy you (women) put into your hair? (not to mention money), it was more than I could handle and I had to choke back the tears until I could run upstairs to my room. Mirrors met me everywhere and my good ol' friend denial was no where to be found.
Fortunately, my good ol' friend Mark was to be found and he stayed with me all night, through each emotional twist and turn. Don't know what I'd do without him.
Reprieve
May 12, 2009
Aaah.....(that's "Aaah" like after a refreshing drink, not "Aaah" like screaming in horror). The past week has been a wonderful reprieve from illness! All the side effects of the chemo have left (well....with the exception of the hair loss). I can even drink water now without getting the heebie-geebies. I plan on FULLY enjoying this renewel of health until Monday when we'll start the whole "recover from chemo" process all over again. Scheduled misery... it just happens sometimes.
Spirits are generally up. I'm usually too busy to get discouraged. It's such a dark and heavy place to be anyway...why go there?
Yeah For Answered Prayers !!!
May 18, 2009
Happiness today. My doctor said on the spectrum of successful chemo results and disappointing chemo results, my last treatment was on the highest end of successful that can be expected! We are having a wonderful Monday!
That good news beautifully piggy-backs news we received yesterday afternoon that Mark's brother and sister-in-law are going to be parents in September! We all have been praying since last May that the right birth mom and little angel would find Jimi and Sarah and were delighted beyond words to find out that that family will finally come together in a few short months!
God is good.
Cancer Fertilizer
May 26, 2009
As a little girl I always considered one of the biggest tragedies that could happen in my life would be if I suddenly became allergic to strawberries. I loved strawberries, grew strawberries, and even got up at 6am in the summer to go pick strawberries. I still love strawberries and can happily say, not one allergic reaction.
However; doctors, gurus, nurses, health fanatics and trusted friends have all confirmed that my other favorite food fetish -sugar- is basically and undeniably "cancer fertilizer".
I have Stage 3 Invasive Ductal Carcinoma. That's a tumor the size of an Oreo. Ya know....about as long as a Tootsie Roll Midgie? Have you ever just downed a spoonful of Nesquik powder without any milk? About that size. Do you see my dilema? I dont' just crave sugar....I think in terms of sugar!
I am in big trouble.
The Ugly Part
May 27, 2009
Two sessions down, six to go. Second verse, pretty much same as the first. No celebrities in the chemo room with me this time (Truman Madsen), but plenty of heroes. Most importantly, I didn't freak out this time so I think I may be back in the running for the "best patient ever" award. Winner gets double juicy juicers and an autographed black and white glossy of the doctor on his yacht "Two More".
Just kidding.
All the same annoying and sometimes darn right painful symptoms. All the same selfless people coming to help us get through it. All the same prayers answered. Just two new side-effects that I'm having some issues with. One...my fingernails are tender. Kinda makes typing a challenge and kinda makes me hope they're not next to fall off. Two....I'm so moody, like irritable moody! Sure, our freezer quitting on us yesterday and having to drag $200 of rotting food out of our basement was never really intended to create a zippity-do-da moment...but I was a downright monster! Like Dr. Laura meets Kate Gosselin kind of monster.
They warned me of this side-effect. Side-effects that spoil your day are one thing, side-effects that spoil your family's day are another. If cancer is ugly, and it is, this is the ugliest part.
Hats
May 28, 2009
To a person that has recently been diagnosed with breast cancer (the "pink" cancer) and has begun to wear hats 90% of the time, it was quite a surprise to open up a Mother's Day gift from my sister to find a miniature pink Hallmark hat box with the words: The Many Hats of Mom. Wow! I knew Hallmark had a card for everything, but this was uncanny. Of course, further inspection of the gift revealed that this really wasn't a "cancer mom" gift like I thought (me and my one-track mind) but rather a charm bracelet with all the hats a regular mom wears (chef, chauffer,nurse, etc.). It is cute! And hey...who's to say that someday I won't find a charm for the cancer ...like a nice wig or do-rag charm?! Thanks Cathy.
Three Time's a Charm, Right?
June 8, 2009
It's two o'clock in the morning. I can't sleep. I have
treatment number three waiting for me in a few hours. We are hoping for more
great news like last time. Something like: "Wow...the tumor's completely
disappeared...we can't find it anywhere!" would be nice. We are also hoping that
appointment number three (for a second opinion) up at the Huntsman Cancer
Institute actually goes through. We've had to cancel the first two appointments
due to technical difficulties obtaining copies of all my scans at the hospital
in Provo. Finally, they managed to get all 8,000 images on to CD's, they are in
my purse and ready to go.
I did sneak a peak at them first. Gross. Ever seen inside yourself? I don't recommend it...but it does lend itself to an interesting analogy... I'll have to share it with you another time.
More than anything...and I mean ANYTHING, I want definitive answers to the question of whether or not it's in my lungs. I'm not sure I've ever prayed this hard for anything in my life.
Not necessarily praying that it's not there....that's a given....of course I don't want it there. The praying is for someone to be able to accurately and definitively diagnose the situation. Right now it's the not knowing that's killing me.
I snuck in to church for the last meeting today, even though I was already on my dexomethasone. Dexomethasone temporarily turns off my immune system, so my body won't reject the chemo. It makes your muscles feel weak, sort of flu like. I promise I won't do it again (church with no immune system, that is), but I just had to go today....I had a message that I really needed to share.
I did sneak a peak at them first. Gross. Ever seen inside yourself? I don't recommend it...but it does lend itself to an interesting analogy... I'll have to share it with you another time.
More than anything...and I mean ANYTHING, I want definitive answers to the question of whether or not it's in my lungs. I'm not sure I've ever prayed this hard for anything in my life.
Not necessarily praying that it's not there....that's a given....of course I don't want it there. The praying is for someone to be able to accurately and definitively diagnose the situation. Right now it's the not knowing that's killing me.
I snuck in to church for the last meeting today, even though I was already on my dexomethasone. Dexomethasone temporarily turns off my immune system, so my body won't reject the chemo. It makes your muscles feel weak, sort of flu like. I promise I won't do it again (church with no immune system, that is), but I just had to go today....I had a message that I really needed to share.
June 16, 2009
My third round of chemotherapy was scheduled for last Monday morning. It was my
mom's first time to sit with me through the ordeal. I wouldn't wish the sitting
and waiting part on anyone, mainly because I am unconscious for the whole thing
and I make for pretty bad company. But my mother is an avid crocheter and is
quite adept with an iPod....so we've yet to find anything she can't out sit or
out wait.
So she could have probably waited forever for my doctor to finish with his first patient and do the pre-chemo exam, but after about an hour of waiting....I had to get dressed and reschedule or I'd miss the Huntsman Center again. It was then that the door to the other exam room opened and I noticed something was wrong. There were way more people than normal in there, and as the doctor walked out, he didn't look up. Soon, the woman whom I'd shared the chemo room with the past few weeks, along with her family, were ushered passed me. Uncontrollably sobbing and shaking she was surprisingly guided to her regular chair and prepped for a round of chemo.
Obviously, she got some pretty hard news that morning. I thought about her all day. I don't know what they told her and I don't know anything about chemotherapy regiments...but I do wonder if I'd have sat down for another dose right then and there after getting such disturbing news or if I'd have bagged the whole thing and found another, more self-indulgent way to spend my day. It just didn't seem fair. What would you do?????
"Fairness gets temporarily traded in for individually needed experiences." Neil A. Maxwell
Meanwhile, up at the Huntsman Center they decided to submit my case to the "Tumor Board". This will give all their specialists a chance to review and discuss my case together at a meeting on June 18th. Should I order a pizza for them? It sure feels like a party to me!
So she could have probably waited forever for my doctor to finish with his first patient and do the pre-chemo exam, but after about an hour of waiting....I had to get dressed and reschedule or I'd miss the Huntsman Center again. It was then that the door to the other exam room opened and I noticed something was wrong. There were way more people than normal in there, and as the doctor walked out, he didn't look up. Soon, the woman whom I'd shared the chemo room with the past few weeks, along with her family, were ushered passed me. Uncontrollably sobbing and shaking she was surprisingly guided to her regular chair and prepped for a round of chemo.
Obviously, she got some pretty hard news that morning. I thought about her all day. I don't know what they told her and I don't know anything about chemotherapy regiments...but I do wonder if I'd have sat down for another dose right then and there after getting such disturbing news or if I'd have bagged the whole thing and found another, more self-indulgent way to spend my day. It just didn't seem fair. What would you do?????
"Fairness gets temporarily traded in for individually needed experiences." Neil A. Maxwell
Meanwhile, up at the Huntsman Center they decided to submit my case to the "Tumor Board". This will give all their specialists a chance to review and discuss my case together at a meeting on June 18th. Should I order a pizza for them? It sure feels like a party to me!
July 1st, 2009
The verdict from the Huntsman Center was reassuring and disappointing at the
same time. Reassuring because they basically said; "Yep...your doctor is
right...this is weird, we've never seen anything like it....let's wait and see
what happens." That sounded oddly familiar...but it was good to hear my doctor's
initial diagnosis verified. Yet disappointing to realize there's still no
answers.
This made me reflect on some observations I made as a young adult. I decided there were three signs to knowing that you had officially grown up: 1. You have to empty your own barf bucket. 2. You realize that some ice cream brands really do taste better than others. 3. You realize for the first time that doctors don't know everything and can't fix everything. There may be more signs to growing up than this, but as far as I'm concerned, these are the basics that all others are built upon and have yet to be proven wrong. : )
But even though doctors don't know everything, they do know a lot more than me. For instance, I've learned new words, like "nadir". It means lowest point. They use it in cancer to describe when you feel the lousiest during your chemo recovery. This last round of chemo for me, had an unusually long nadir. As a result, I only had six days of "yeah! I'm back to my usual self, please pass the water" as opposed to my usual 10-14 days.
I also learned the word "lacrimation" which means production of tears. My eyes cry almost constantly, even when the rest of me is perfectly composed. It's been a new side effect of the chemo. As inconvenient as it can be to try and drive with blurry eyes and as uncomfortable as it is to have salt water drying out the skin around your eyes, I'm actually grateful that the side effect isn't lack of tears. I hate eye-drops!
As of tomorrow, we'll be half-way through my treatments . The initial "adventure" approach to this whole ordeal has officially worn off. It's now been reduced to a mere "burden" status with an occasional "lost my mind" here and there.
But I did get to leave the house this week and go to church on Sunday, AND I was also blessed this week to look out of my bedroom window at just the right time and by chance see one of my neighbors going out of their way to take care of another neighbor. And there's just something about that that makes you feel right again.
This made me reflect on some observations I made as a young adult. I decided there were three signs to knowing that you had officially grown up: 1. You have to empty your own barf bucket. 2. You realize that some ice cream brands really do taste better than others. 3. You realize for the first time that doctors don't know everything and can't fix everything. There may be more signs to growing up than this, but as far as I'm concerned, these are the basics that all others are built upon and have yet to be proven wrong. : )
But even though doctors don't know everything, they do know a lot more than me. For instance, I've learned new words, like "nadir". It means lowest point. They use it in cancer to describe when you feel the lousiest during your chemo recovery. This last round of chemo for me, had an unusually long nadir. As a result, I only had six days of "yeah! I'm back to my usual self, please pass the water" as opposed to my usual 10-14 days.
I also learned the word "lacrimation" which means production of tears. My eyes cry almost constantly, even when the rest of me is perfectly composed. It's been a new side effect of the chemo. As inconvenient as it can be to try and drive with blurry eyes and as uncomfortable as it is to have salt water drying out the skin around your eyes, I'm actually grateful that the side effect isn't lack of tears. I hate eye-drops!
As of tomorrow, we'll be half-way through my treatments . The initial "adventure" approach to this whole ordeal has officially worn off. It's now been reduced to a mere "burden" status with an occasional "lost my mind" here and there.
But I did get to leave the house this week and go to church on Sunday, AND I was also blessed this week to look out of my bedroom window at just the right time and by chance see one of my neighbors going out of their way to take care of another neighbor. And there's just something about that that makes you feel right again.
Rebel Without a Clue
July 10, 2009
Today I did a whole lot of stuff that I'm quite sure I'm not supposed to do.
After all, I have spent the past bazillion days (in cancer time) being a very good
girl, doing everything right, and feeling wretched nonetheless....so I figured
that it was due time to balance the cosmic scales and well....just be an idiot.
) (hey...they left me unsupervised....what can I say?)
So I got up and spent six hours working in the yard at our rental. Hard yard work labor. That's right, without a break of any kind. I even touched dirt with my own hands. Then I promised our vacant apt. to two different people. (someone will have to hate my guts later). Then when I came home I ate the peppermint taffy off of Kate's dresser without her permission and left the wrappers on Phoebe's night stand, presumably without her permission as well.
Now, I can't hold the phone or glass of water without shaking. This may make my impending shower a little interesting. And I can only hope after a really good long nap, I'll have recovered enough to still go to the movies tonight. All reviews indicate that Disney's "UP" is fantastic. In my case, I sure hope that means that it transcends the effects of modern day painkillers.
I may have to pay a price for breaking the rules today...I know that. But oh my gladiolas! Did I ever need to be useful and sweaty and totally unaware of cancer.....just for today!
Tomorrow I have to go to an ophthalmologist.....EYE GUY....about my constant tearing. Something about my tear ducts scarring up and inserting rods or tubes in my eyes.....WHAT?! Are you kidding me? Will they make me run with scissors and throw rocks too? We don't insert things into our eyes, do we? No. No we don't.
I guess that's where I, the rebel girl without a clue, draw the line. No....no, we do not put things into our eyes. Help. Anyone?
So I got up and spent six hours working in the yard at our rental. Hard yard work labor. That's right, without a break of any kind. I even touched dirt with my own hands. Then I promised our vacant apt. to two different people. (someone will have to hate my guts later). Then when I came home I ate the peppermint taffy off of Kate's dresser without her permission and left the wrappers on Phoebe's night stand, presumably without her permission as well.
Now, I can't hold the phone or glass of water without shaking. This may make my impending shower a little interesting. And I can only hope after a really good long nap, I'll have recovered enough to still go to the movies tonight. All reviews indicate that Disney's "UP" is fantastic. In my case, I sure hope that means that it transcends the effects of modern day painkillers.
I may have to pay a price for breaking the rules today...I know that. But oh my gladiolas! Did I ever need to be useful and sweaty and totally unaware of cancer.....just for today!
Tomorrow I have to go to an ophthalmologist.....EYE GUY....about my constant tearing. Something about my tear ducts scarring up and inserting rods or tubes in my eyes.....WHAT?! Are you kidding me? Will they make me run with scissors and throw rocks too? We don't insert things into our eyes, do we? No. No we don't.
I guess that's where I, the rebel girl without a clue, draw the line. No....no, we do not put things into our eyes. Help. Anyone?
Almost ThereJuly 30, 2009
Well, the answer is that sometimes the chemo will only stun some cancer cells, sort of put them to sleep. We don't want them waking up in a few months with raging hang-overs, so we kick 'em, shoot 'em, zap 'em till we're sure they're good and dead. It kind of feels like I've been stuck in this ugly, dank room for the past three months and people are starting to talk about letting me out...but not yet. I guess that's how the pioneers felt after pulling their wagons over big treacherous hills, just to find another one waiting for them on the other side. Endurance. Turns out it's more than a deodorant.
As for today, I'm quarantined. White blood cell count too low. Fought down a fever all last night, successfully avoiding a trip to the ER. Amazing what a $50 pill will do for you. BTW....have I ever mentioned how much chemo costs? Just for the liquid poison, it's $17000 a whack. That doesn't include any other costs, like needles, tubes, nurses, etc. Insurance rocks.
But Who's Counting?
August 14, 2009
20 days until my last chemo treatment. 41 until my first surgery.
306 pills on my counter, waiting to be taken.
And only 3 more shots.
(There were 2 praying mantis' in my yard yesterday and 1 humming bird but that's neither here nor there)
160 miles left to drive back and forth to the hospital
110,000 hairs to grow back on my head (my legs can skip this part if they want)
144 hours of quarantine with no immune system (how many sani-wipes is that?)
WAY too much time left to watch t.v. I've gone from 2 hrs. a week to over 30. (Don't watch PBS fund-raisers on pain-killers...you'll be way too happy to contribute. They had me at John Denver. He filled up my senses, ya' know. Never mind. Let's move on....
4 wigs, just waiting to be washed, styled and retired.
5 pounds just waiting to be lost (yes, you actually gain 5-10% of your body weight with breast cancer..cancer really stinketh).
1,000,000 reasons to thank our parents for everything they've done, 0 ways that will ever be adequate enough.
What does it all add up to? One lucky me. I realize, regardless of how my countdown shapes up, or down, not all people suffering get a count down, or even have an end in sight, they just don't know when their night will end, if ever. I'm the lucky one here. And I'm counting!
Goofy Girls Start with Goofy Hats
Here I Am
September 14, 2009
So, I finished my last chemo, they gave me a bottle of sparkling cider and I gave them gift cards. We took lots of pictures, and then I left. It's almost been two weeks now.
What do you do with a post-chemo patient? I would like to know because I am one, and I don't quite know what to do with myself. Hello! I have five kids and a loaded leadership position at church that's waiting for me! I know. There's plenty to do with all that. I just don't know what to do with myself. I feel like I just got off an airplane, but lost some of my luggage.
I know some things are going to take a while to recover. They say two years, as far as getting my mental acuity back. No telling when the feeling in my fingertips will return. Lung capacity...probably before the month is through. Hair growth...let's not even go there.
All fair trade-offs, I guess, for what I've gained from the whole ordeal. I gained the privilege of seeing deep into the sincerest, kindest part of many a beautiful human souls. Still don't know what to make of the stupid ones though. I guess God has a whole other trial waiting to help me understand those people. It would be easier if I'd just pray for the heart to love them right now, huh? Okay...I will. But would it be wrong to include a request in my prayer that they move to New Zealand in the mean time?
I know. Cancer survivors are supposed to be born again lovers of all nature and mankind. I'm supposed to dance by the side of the road when I get a flat tire, because after all...I beat cancer and I'm alive!!!! Actually, I do that all the time. Really. Sometimes I even pull over when I see other people with flat tires and dance for them. They like it, I can tell. It's just that...well, never mind. Maybe the "stupid ones" are more like me than I care to admit. Maybe they've also lost some luggage recently and are just waiting, like me, for it's return.
I'll Be Playing the Part of Frankenstein
September 19, 2009
My surgery is coming up at the end of this week. I am terrified. Losing sleep kind of terrified. I don't know what scares me more...the surgery or the recovery or what my life will be like afterward. For instance, I may not be able to sleep on my right side...ever again. Is that weird or what? What if my right side is the only side I don't snore on?
The ease with which my surgeon
talks about removing a part of my body is surreal. Not unlike the ease with
which my reconstructive surgeon talks about the "building me back up" part.
Drains? Pain-pumps? It's all quite horrifying to me. Guess who's playing the
part of Frankenstein this year?But...the good news...I've got a freezer full of Ben and Jerry's Chunky Monkey. Thanks mom. I also think I'm going to have enough $ and energy to go indoor skydiving one last time as well. Who could ask for more?
"Vanity is the first thing to go." Michael J. Fox
Surgery
October 1, 2009
Let me just start by saying...I could really gross you out right now. But I think instead, I'll just milk you shamelessly for sympathy. Those are basically the two options that a recovering mastectomy patient has to work with. To answer the question I posed to myself in my last blog as to which I was more worried about...the surgery, the recovery or life after boob-loss, I can emphatically and unequivocally say recovery. Recovery, recovery, recovery, recovery. That spells OUCH! Ouch with a capital damn it! Now you can judge me, scold me, and reprimand me all day long for swearing in my blog, but that would only leave me with one question: Do you like your karma shaken or stirred?
Sadly, they found cancer on my lymph nodes and In Situ cancer cells in several other spots. That's sad because it means I have to have radiation. It's good because it means I'll never second-guess if having a mastectomy was necessary.
The Other Side of Pain
October 19, 2009
Wanna know a great place to be? Try the other side of pain. That's where I have finally ended up after three weeks of recovery from surgery. I shudder to think that there are situations out there that could cause people more pain than I had to experience, but there probably are.
Most of what I experienced could have been avoided if prescription drug abuse wasn't such a huge problem. My doctors were quick and eager to encourage me to get weaned off of the pain killers as soon as possible, before I became an addict I guess. I obediently listened and complied. But it was way too soon. For several days painful spasms would seize my body until I not only shook uncontrollably, but I couldn't speak either. They're called phantom pains, but nothing has ever felt so real to me. Apparently, when nerves are severed in an amputation, they will sometimes remember the last "message" they received before being sliced, and having nothing else to do now that the removed piece of the body is gone...they just replay that last message to the brain over and over...and over. So even though I was unconscious and didn't feel anything during the actual operation, thanks to the phantom pains, I got to feel the scalpel making incisions and dissections dozens of times in those first few days after the procedure.
As hard to believe as it may sound, there was actually something worse than the physical pain. It was the mental anguish of knowing that at any time, it could start all over again and I never knew when it would. It was as close to losing my mind as I have ever been. Fortunately, a trip back to the doctor to readjust my pain medications made life more manageable again until those poor severed nerve endings either died or found something else to do other than torture me.
I've been off the pills now for over five days with no problem at all. Now that I think about it, I should have gone to the doctor sooner and given myself more credit. I have had extremely powerful pain killers at my disposal during my entire cancer treatment process, since April, and I've always had some left over that I've just thrown out. So, if I was going to be an addict, it would have happened a long time ago. Addicts don't throw away oxycodone.
Beauty and the Beast
October 23, 2009
Any day is a good day to go to an art museum, but autumn days have to be the BEST. There's just something about spending an hour soaking up the hues and strokes of the masters and then getting to walk back to your car through fallen leaves. Somehow it makes you feel more human. It's spa treatment for the soul.
Odd how my museum experience yesterday would be so starkly and unexpectedly juxtaposed this morning at my doctors appointment. In preparation for radiation next week, I laid on a table while two technicians marked me up with a sharpie, taped BB's on me and gave me a few tattoos. Yes, tattoos. For real. They were very kind and attentive technicians, but still...no matter how many warm blankets and pillows and "you're doing great"'s they give you, there's just very little room left to feel like a person in that situation. I've never felt more "unperson-like" in my life.
True, this may be the cumulative effect of ALL the cancer treatments I've had just finally getting to me. Bald and de-boobed is one thing. Being marked on..that just adds insult to injury.
I know what you're thinking. I lost you at "tattoo". You must know more! Ok...the tats are just "freckles" they use to make sure they're zapping me in the same place every time. I'm tattooed only in the technical sense of the word, but tattooed nonetheless.
Liking Flies
October 28, 2009
I have now gone and laid on the radiation table three times, each time thinking it would be better than the last. Each time reminding myself that everyone says radiation is so much easier than chemotherapy. And I suppose when I'm no longer filled with disgust and loathing for radiation therapy, I'll most likely agree with that. But for now...I have to tell you...I think I actually like the fly that's buzzing around my kitchen right now more than I like having radiation.
For those of you that can't believe I actually have a housefly on my A list now, I know...I can't believe it myself. I'm pretty sure I haven't lost my mind, but let me tell you what radiation is like, just in case. Unless of course, you really don't care, then I wouldn't read on. Otherwise...
Number one is easy: Try laying on a table. A table, not a bed. Hard and flat, huh?
Number two is a little more complicated: Imagine your armpit is now made of scar tissue, scar tissue that is connected to not-scar tissue. Now strike a pose by raising your arm (ouch) until your elbow is practically (ouch) behind your head and hold it there (ouch) for ten minutes without moving at all.
Three: While you are enjoying this position, a huge metal "camera lens" robot thing the size of a tire will come within inches of your face and everyone in the room will leave and stand behind these six inch metal doors while it starts shooting scary-whatever-radiation-is stuff at your body. You're really hoping it misses your lungs and your arm because you're rather fond of breathing and you really don't want your arm to blow up to the size of Fat Albert's (lymphedema).
Number four: Everyone comes back in the room and peels you off the table because you can hardly move a muscle after being frozen like that for ten minutes...they promise you next time will be better and then you hobble back to the dressing room to change out of your gown.
Now, take your newly sunburned self home to George (your fly friend) and taunt him with the sweet smell of aloe vera gel. Repeat every day for six weeks.
Better Days
November 2, 2009
Time heals...and stretches. Radiation is no longer as devastating as it started out to be. And George has moved on to that big horse farm in the sky. So I guess I'll have to find something else to whine about now. Just kidding...but thanks to everyone who humored me during my recent jaunt into the world of whininess. I owe ya' one.
The Cancer that Saved Christmas
December 7, 2009
Last week I had my last radiation treatment. Because of some goofy things they are doing with my husbands insurance at work, we had to cram the last two weeks treatments into one week, but it all worked out. I just feel awful that someone had to come in to work just for me over the Thanksgiving break. But how nice was that!? I'm sure my puny little $10 Cinemark gift card made it all worth his while. ha!
So now the radiation will keep burning inside and outside of me for about two weeks and then my skin should start returning to normal. Normal. I like the sound of that.
Oddly enough, I will really miss my radiation staff. It was actually sort of nice to start off every day with our little visits. And donuts every Friday didn't hurt either.
So far, having cancer hasn't given me the big life changing epiphanies that I thought it would. Cancer's lessons have been small.. but sweet nonetheless. One of them I realized rather recently. Up until this year, my opinion of Christmas and all that goes with it had become rather...worn out. I'll spare you all the reasons, but let's just say; Christmas had become another chore for me to do. But when we put the tree up last week, I rather enjoyed it. And shopping hasn't been the burden I remember. I even bought a book full of snowflake patterns and we totally littered the kitchen yesterday with specks and slivers of tiny paper shrapnel making one beautiful paper snowflake after another.
So, ho-ho-ho and God bless us everyone. Ding-dong the Grinch is dead. "Wha-hoo dooray" which in Whoville means: little hair, big heart, bring on the egg nog.
Plastic Surgery
January 13, 2010
Let’s face it; there are just some parts of your body you don’t want to discuss with anyone, not even your doctor. We get embarrassed. However, cancer is no respecter of organs. Therefore we find that as age marches on, we must submit to awkward medical procedures and conversations once in a while, in order to prolong our stay as mortals.
Let’s all be mature, shall we? Well, that’s easier said than done for me. I am 40 years old yet I still crack up like a fifth grader when I hear the word “fart”. Just typing it made me laugh. So perhaps that explains why I’ve found it difficult to have breast cancer. I feel awkward talking about breasts, especially my own.
So imagine, immature little me having to delve head first into the world of plastic surgery. Imagine me at my first appointment with my plastic surgeon as he explained the reconstruction process. I felt like I was investigating some sort of cult, incredulous to learn what they were putting in the punch that everyone was drinking.
No way was I going to write about this in my blog. Too weird and way too personal. But then I kept seeing this beautiful young girl in my head, sitting at her computer, contemplating cosmetic surgery. Could anyone out there be more starved for the truth than today’s youth? Could anyone be more vulnerable to our cult of beauty?
So it is with “her” in mind that I swallow my pride and put my giggles away. For you, my little sister, I share my honest thoughts: Yes, your dress may fit a little better, but just as the novelty of buying that dress wore off, so will the novelty of your new profile in it. You’ll be just as happy or miserable as you were as an A cup now that you’re a D. I once lived in a Parade of Homes home, now I live in a duplex. My surroundings have changed, but in the morning, I still wake up with the same me that I used to put to bed at night in my old mansion. Happiness and success comes from the soul, not the shrink-wrap.
As fabulous a job as plastic surgeons have done over the years to improve their ability to mimic nature, there’s still no fooling anyone. Not anyone. Fake is fake. If you can live with it, fine. Many do. I do. But if you had a choice, would you rip the trees out of your yard and replace them with silk ones from the super mart? Silk plants are great. I love ‘em. But silk plants don’t give me oxygen. They don’t grow. They don’t need me.
They don’t interact with their environment, overcome adversity, follow the sun, or do anything dynamic and memorable like real foliage does. Fake is fake.
Finally, let me just say…it hurts. It really, really hurts. Each of us gets to choose every day how much suffering we will introduce to the world. The less suffering we inflict upon each other, the better. The less suffering we inflict upon ourselves, the best.
So little sister, this is my opinion. Not my judgment. I condemn no one for choices that come from a heart that has never beat in my chest. To the rest of my readers, I hope I didn’t offend anyone and I hope you never let “body embarrassment” stop you from doing the right thing, from having a colonoscopy to saying excuse me. (pardon me while I giggle)
Go On
January 27th, 2010
The next 500 words you read in this blog, give or take a few, will mark the end of my career as a cancer blogger. All in all, that’s a really good thing because it means I have run out of things to say about life with cancer. It has stopped being a disruption in my life.
Some people ask me if I am in remission and, what the heck…I say yes. My doctors haven’t exactly used those words. But that is mainly because it has sort of fallen out of fashion to say the word remission in the world of oncology. It’s too gloomy. It suggests an eventual return, does it not? So you might hear the acronym NED instead, which means No Evidence of Disease. You say tomato; I say… as long as I don’t have to have chemo, I’m happy!
Looking back on my initial diagnosis and the hours that followed, I’m struck by how certain I was that I was going to die, how desperately I did not want to leave my children, and how overwhelmed I was at the thought of someone having to sort through that pile of papers on my desk that never seemed to go away, after I died. The first two thoughts demanded every tear my tear ducts could produce, the last one…well that was just weird, but so very very me.
Now I find myself consumed in a crossword or sudoku puzzle every chance I get in a desperate attempt to eradicate “chemo brain” or what some call the “chemo fog”. I actually drove my car to the Safety/IM station for an inspection not too long ago, just to realize as I pulled into the bay that the car that needed the service was still in my garage at home and that I had driven the wrong car down. But my favorite story comes from a young musician/chemo patient in New York who got a flat tire late one very, very cold winter’s night. He got out of the car and managed to jack up his car and put the spare tire on without freezing his fingers off or getting mugged, just to realize as he was one foot back into the vehicle that he had changed a perfectly good tire and the flat one was still sitting on the wheel!
So, everything is going to be all right. I won’t blame myself for the tumor, but I will eat less sugar and more vegetables. I’ll take a hundred bad hair days over a “no-hair” day, any day and I will find a six-letter word for "laugh" before the night is through. My blog will go on...but have very little to do with cancer, if anything at all. Cheers.
Many cancer patients learn to live with chemotherapy induced baldness... unfortunately, some of them have to learn to live with it even after the treatments have ended. My journey down that road is as follows:
Eternal Calculus
This post is going to be quite different than my last several posts. My last few posts all started and ended with a blank text box. There was so much to write, but no way to write it. Fortunately, a picture is worth a thousand words and some old albums have come to the rescue. But before I get to my slide show, perhaps an explanation is in order.
Two days ago marked a year since my last chemo treatment. Hence, I have been growing my hair back now, for 367 days. That is, theoretically I have been growing my hair back for 367 days. T h e o r e t i c a l l y. Realistically...it hasn't been going so well.
It's been months now since I've started to worry. My chemo buddies all have short, but rather full heads of hair already. I have short, rather thin and transparent hair on my head. I have long since done the dreaded google search that went something like "hair always grow back after chemo" to find out that about 3-6 % of women will not get their hair back. I'm holding on to the hope that since it took me a while as a baby to grow hair, that it will just take me a while as an adult to do the same. See:
this is how much hair I had when I was born
This is how much gas I had when I was born (isn't mom pretty?)
this is me 5 months later (isn't grandma pretty?)
This is me a year after I was born...bald
I stuff this down every morning and quickly groom so as to move my mind on to something else as swiftly as possible. Layers and layers of this angst had built up enough that I knew it was getting pretty close to the surface and that eventually I would snap, slump into a corner of my bedroom in a pile of tears, and refuse to come out ever again.
I was partially right. One day I did snap. But I was in the shower, and I had just reached up to wash my hair when the thought of "what's it matter" and the thought of getting out of the shower to see me in the mirror again both collided. Let's just say...it's not the first time I've sobbed in the shower.
So there you have it. This is not a pity party for me. This blog has never been about that. This is for all the times I've dropped in on someone else's cancer blog and felt not so alone when I was done there. Maybe there's someone else out there that's 40 and looks like 80 and now we're soul sisters.
The Lord is reportedly counting the hairs on our heads. I am counting the days since chemo. I've never really liked math.. but this has got to be the worst story problem ever.
Wig History
First day with a new wig. Awkward. But I don’t know what else to do. After wearing a wig for a few months I come to resent it for not being my real hair. I come to resent it for being the same style EVERY DAY. No ponies, no clips, no straighteners or curlers, just precisely how it looked yesterday, and the day before that and the day before that. Which brings me to today. First day with a new wig. You don’t want to garner ANY attention, but you will. You don’t want to draw attention to the part of your appearance you hate the most, but you will. Courage, deep breathe, cue the denial. Let’s go.
Six hours later…
It actually wasn’t that bad. People are either getting used to my wig changes or the change was more subtle this time. I still have the extended family debut and the church family debut, but one down, two to go. Today was definitely the hardest of all three. But I did get one laugh out of it. I was at Target buying the office soda stash for the next two weeks when the cashier complimented the way my hair curled. I said “thank you”. To my chagrin, the exchange continued as she inquired as to what I used to produce the curl; hot rollers or round brush and blow dry? For this, I was TOTALLY caught off guard. Ill-prepared. If I had ever anticipated the question, I would have been ready with a good, normal sounding answer. But I wasn’t, so after stammering for a moment I simply said “It’s a wig.”
Turns out, that’s a conversation stopper. She got caught somewhere between sympathy and embarrassment and I got caught glaring at what had to be the slowest receipt printer in the world!
But in the end, on my way across the parking lot, the daffiness of it all got the best of me and made me giggle. “Lord, keep your arm around my shoulder and your hand over my mouth.”
New Wig
Wig History
June 18, 2011
When you're a woman, and life hands you this sentence: "Comb-over, 50 to life", you can try to discern what crime you committed to deserve such a punishment, or you can carefully meter out what courage you still have left from all the other sucker-punches you've been dealt and march on... until you drop.
Here's what happens. One day you'll want to go out with your husband and NOT wear a wig or a hat or anything. You'll want to feel normal, even though you know your not. So you'll choose a venue in another city where no one knows you. You will strategically place every strand of hair where it can cover the most scalp and still look inconspicuous. Then off you'll go.
In my case, we chose the Timpanogos Temple. This is the part where the temple workers; the kindest, most seasoned, sweet little old ladies would speak to me, all the time looking me in the eyes, except of course for the occasional, almost rhythmic glance up...at my hair. And yes, they pretty much all had more hair than me.
No worries, right? Who cares. Off to the grocery store. It's 10:30 now, on a Friday night. I won't see anyone I know, right? Wrong. There's person A at the cucumbers, but fortunately I can duck into the cereal isle quick enough before she sees me and wants to chat. Phew! But who would be in the cereal isle??? Person B. Now I'm surrounded. I have to talk to person B, and sure enough, buying cucumbers obviously reminds person A how much she needs some rice crispies and viola! it's a party in the cereal isle. Everyone's invited but my hair.
So, ok...let's be humble. Let's have a little perspective. Let's go buy some milk. We won't see anyone else we know, for the remainder of the jaunt, but we will pass another woman...with a comb-over. She'll be a night stock person. She has the good sense to relegate herself to the graveyard shift where all women who look like they just crawled out of a grave belong.
I'm almost out of courage. I feel it waning. I've done my best. It's time to drop.
I need a farm, out in the middle Kansas somewhere, where no one has my address and I don't even own a phone. Or a miracle...yeah, that would be nice too.
Choose Your Poison Carefully. Thoughts on Taxotere
Eternal Calculus
This post is going to be quite different than my last several posts. My last few posts all started and ended with a blank text box. There was so much to write, but no way to write it. Fortunately, a picture is worth a thousand words and some old albums have come to the rescue. But before I get to my slide show, perhaps an explanation is in order.
Two days ago marked a year since my last chemo treatment. Hence, I have been growing my hair back now, for 367 days. That is, theoretically I have been growing my hair back for 367 days. T h e o r e t i c a l l y. Realistically...it hasn't been going so well.
It's been months now since I've started to worry. My chemo buddies all have short, but rather full heads of hair already. I have short, rather thin and transparent hair on my head. I have long since done the dreaded google search that went something like "hair always grow back after chemo" to find out that about 3-6 % of women will not get their hair back. I'm holding on to the hope that since it took me a while as a baby to grow hair, that it will just take me a while as an adult to do the same. See:
this is how much hair I had when I was born
This is how much gas I had when I was born (isn't mom pretty?)
this is me 5 months later (isn't grandma pretty?)
This is me a year after I was born...bald
I stuff this down every morning and quickly groom so as to move my mind on to something else as swiftly as possible. Layers and layers of this angst had built up enough that I knew it was getting pretty close to the surface and that eventually I would snap, slump into a corner of my bedroom in a pile of tears, and refuse to come out ever again.
I was partially right. One day I did snap. But I was in the shower, and I had just reached up to wash my hair when the thought of "what's it matter" and the thought of getting out of the shower to see me in the mirror again both collided. Let's just say...it's not the first time I've sobbed in the shower.
So there you have it. This is not a pity party for me. This blog has never been about that. This is for all the times I've dropped in on someone else's cancer blog and felt not so alone when I was done there. Maybe there's someone else out there that's 40 and looks like 80 and now we're soul sisters.
The Lord is reportedly counting the hairs on our heads. I am counting the days since chemo. I've never really liked math.. but this has got to be the worst story problem ever.
Wig History
First day with a new wig. Awkward. But I don’t know what else to do. After wearing a wig for a few months I come to resent it for not being my real hair. I come to resent it for being the same style EVERY DAY. No ponies, no clips, no straighteners or curlers, just precisely how it looked yesterday, and the day before that and the day before that. Which brings me to today. First day with a new wig. You don’t want to garner ANY attention, but you will. You don’t want to draw attention to the part of your appearance you hate the most, but you will. Courage, deep breathe, cue the denial. Let’s go.
Six hours later…
It actually wasn’t that bad. People are either getting used to my wig changes or the change was more subtle this time. I still have the extended family debut and the church family debut, but one down, two to go. Today was definitely the hardest of all three. But I did get one laugh out of it. I was at Target buying the office soda stash for the next two weeks when the cashier complimented the way my hair curled. I said “thank you”. To my chagrin, the exchange continued as she inquired as to what I used to produce the curl; hot rollers or round brush and blow dry? For this, I was TOTALLY caught off guard. Ill-prepared. If I had ever anticipated the question, I would have been ready with a good, normal sounding answer. But I wasn’t, so after stammering for a moment I simply said “It’s a wig.”
Turns out, that’s a conversation stopper. She got caught somewhere between sympathy and embarrassment and I got caught glaring at what had to be the slowest receipt printer in the world!
But in the end, on my way across the parking lot, the daffiness of it all got the best of me and made me giggle. “Lord, keep your arm around my shoulder and your hand over my mouth.”
New Wig
Wig History
June 18, 2011
When you're a woman, and life hands you this sentence: "Comb-over, 50 to life", you can try to discern what crime you committed to deserve such a punishment, or you can carefully meter out what courage you still have left from all the other sucker-punches you've been dealt and march on... until you drop.
Here's what happens. One day you'll want to go out with your husband and NOT wear a wig or a hat or anything. You'll want to feel normal, even though you know your not. So you'll choose a venue in another city where no one knows you. You will strategically place every strand of hair where it can cover the most scalp and still look inconspicuous. Then off you'll go.
In my case, we chose the Timpanogos Temple. This is the part where the temple workers; the kindest, most seasoned, sweet little old ladies would speak to me, all the time looking me in the eyes, except of course for the occasional, almost rhythmic glance up...at my hair. And yes, they pretty much all had more hair than me.
No worries, right? Who cares. Off to the grocery store. It's 10:30 now, on a Friday night. I won't see anyone I know, right? Wrong. There's person A at the cucumbers, but fortunately I can duck into the cereal isle quick enough before she sees me and wants to chat. Phew! But who would be in the cereal isle??? Person B. Now I'm surrounded. I have to talk to person B, and sure enough, buying cucumbers obviously reminds person A how much she needs some rice crispies and viola! it's a party in the cereal isle. Everyone's invited but my hair.
So, ok...let's be humble. Let's have a little perspective. Let's go buy some milk. We won't see anyone else we know, for the remainder of the jaunt, but we will pass another woman...with a comb-over. She'll be a night stock person. She has the good sense to relegate herself to the graveyard shift where all women who look like they just crawled out of a grave belong.
I'm almost out of courage. I feel it waning. I've done my best. It's time to drop.
I need a farm, out in the middle Kansas somewhere, where no one has my address and I don't even own a phone. Or a miracle...yeah, that would be nice too.
Choose Your Poison Carefully. Thoughts on Taxotere
In the unfortunate event that you or a friend are diagnosed with breast cancer, and an oncologist prescribes Taxotere (manufactured by Aventis), please make sure that plenty of thought is given to all of the side-effects, but this one in particular: Taxotere users have a 3-6% chance of never recovering their hair after treatment. This ranges from never recovering all of their hair, to never recovering some of their hair.
To put this in perspective, in America approximately 289,000 women are diagnosed with breast cancer a year. If all of them used Taxotere as part of their chemotherapy, the result would be between 8,670-17,340 women who would, for the rest of their lives, suffer from Persistant Chemo Induced Alopecia. Significant hair loss.
Compare this to other undesirable statistics: 400 people are struck by lightning a year (40 fatally struck), 60 people are attacked by sharks (worldwide), 1,500 people are injured in tornados (70 people die), and there were 117 aviation accidents last year with 828 fatalities. These are all incidents and events that we people as a whole, not only fear, but take great measures to avoid when possible. If comparing hair loss to natural disasters seems a little dramatic and out of context, just ask a woman if she'd rather be struck by lightning or see the top of her naked scalp every day for the rest of her life.
"Better bald than buried" we all used to say in the chemo room at the hospital; and that is certainly true. But if you've ever read Lance Armstrong's cancer story, you will remember that when he learned that his prescribed chemo would jeopardize his lung performance for the rest of his life, he didn't say "Better breathless than buried", he made the doctors do their homework and find an alternative chemo that would not affect his lungs.
We're all just so scared and overwhelmed when we first get our diagnosis. There are SO many choices to make and an overwhelming amount of new vocabulary and facts to digest, we just latch on to whatever the doctor says and start running the race of our lives before we even check to see if our laces are tied.
I just wish someone would have spelled this out to me. I would have dug deeper. There was NO question in my mind that my hair was going to grow back. I had the stages of regrowth all worked out in my head, with all the cutest short hairstyles already selected. Start out with the Sinead O'Connor look, then move on to Halle Berry...add a little Meg Ryan pixie-cut next...you get it.
And in case you're a dude, and you just don't get it...here's your analogy for the day. Boobs. Imagine getting a nice rack when you turned 40. Not just fat-gut man boobs, I mean the real deal, jiggy-wiggly girl stuff. Now take a cold shower and stay with me (remember, they're on you). Yah, you could tape 'em down, alter your wardrobe, whatever. I know...I've got wigs and hats. But the cold hard fact is...the new look sucks and you just want to be you again. This was never part of the plan.
So wah-wah-poor-me-barf; I know, but the bottom line is (since we're spending time at the bottom): If you're the type of person who would hide from a tornado or avoid swimming with sharks, be woefully wary of the Taxotere. Tell your friends. Don't let them be one of the numbers. The odds of hair complications on that medicine are higher than most of these other dreadful risks. Read the small print. If it says "hair growth should resume 4-6 weeks after completing treatment", don't put a whole lot of money on "should".
See http://aheadofourtime.org/ for more information, and heal at your own risk.
To put this in perspective, in America approximately 289,000 women are diagnosed with breast cancer a year. If all of them used Taxotere as part of their chemotherapy, the result would be between 8,670-17,340 women who would, for the rest of their lives, suffer from Persistant Chemo Induced Alopecia. Significant hair loss.
Compare this to other undesirable statistics: 400 people are struck by lightning a year (40 fatally struck), 60 people are attacked by sharks (worldwide), 1,500 people are injured in tornados (70 people die), and there were 117 aviation accidents last year with 828 fatalities. These are all incidents and events that we people as a whole, not only fear, but take great measures to avoid when possible. If comparing hair loss to natural disasters seems a little dramatic and out of context, just ask a woman if she'd rather be struck by lightning or see the top of her naked scalp every day for the rest of her life.
"Better bald than buried" we all used to say in the chemo room at the hospital; and that is certainly true. But if you've ever read Lance Armstrong's cancer story, you will remember that when he learned that his prescribed chemo would jeopardize his lung performance for the rest of his life, he didn't say "Better breathless than buried", he made the doctors do their homework and find an alternative chemo that would not affect his lungs.
We're all just so scared and overwhelmed when we first get our diagnosis. There are SO many choices to make and an overwhelming amount of new vocabulary and facts to digest, we just latch on to whatever the doctor says and start running the race of our lives before we even check to see if our laces are tied.
I just wish someone would have spelled this out to me. I would have dug deeper. There was NO question in my mind that my hair was going to grow back. I had the stages of regrowth all worked out in my head, with all the cutest short hairstyles already selected. Start out with the Sinead O'Connor look, then move on to Halle Berry...add a little Meg Ryan pixie-cut next...you get it.
And in case you're a dude, and you just don't get it...here's your analogy for the day. Boobs. Imagine getting a nice rack when you turned 40. Not just fat-gut man boobs, I mean the real deal, jiggy-wiggly girl stuff. Now take a cold shower and stay with me (remember, they're on you). Yah, you could tape 'em down, alter your wardrobe, whatever. I know...I've got wigs and hats. But the cold hard fact is...the new look sucks and you just want to be you again. This was never part of the plan.
So wah-wah-poor-me-barf; I know, but the bottom line is (since we're spending time at the bottom): If you're the type of person who would hide from a tornado or avoid swimming with sharks, be woefully wary of the Taxotere. Tell your friends. Don't let them be one of the numbers. The odds of hair complications on that medicine are higher than most of these other dreadful risks. Read the small print. If it says "hair growth should resume 4-6 weeks after completing treatment", don't put a whole lot of money on "should".
See http://aheadofourtime.org/ for more information, and heal at your own risk.
Here's the little bird that flew into our garage today and couldn't figure out how to get out (nevermind the HUGE opening right behind him that we all like to call a "garage door".
Here he is banging his head against the window.
Here's his partner in crime, acting like he doesn't know him.
When these little birds aren't hanging out in my garage, they are outside snagging the bugs from my lawn (at least I think that's what they're eating). Five or six at a time, all out there pecking away. Thank you little birdies! Bye bye little insects!
Also in my garage is a bag of unopened lawn fertilizer. You see, however much I would like a nice, lush, weed n' feeded yard, I can't bring myself to dump this dust on their dinner. You're welcome little birdies.
And since we're talking about fertilizer...this is my eyeball. Rachel says it's creepy. I think she means the picture is creepy... because it is. But this is to show you that I have, if I do say so myself, pretty hazel eyes. They are my mothers eyes.
Rachel has them also, see? As a matter of fact, so does Phoebe and Kate.
We all have my mothers pretty hazel eyes.
Here is Phoebe's Eye. Kate's eye is in Utah and my camera doesn't have a big enough lense to take a picture from this far away.
So after the chemo was supposed to have worn off and I found myself waiting in vain for the return of all my hair, people started recommending the new prescription eye lash fertilizer, Latisse. There was just one little side effect: it could change your eyecolor.
Well, that was a deal breaker for me! No way. Having long, thick eyelashes cannot be better than having my mother's hazel eyes. So even though I have so few eyelashes you can count them now, and even name them if you wanted to....once again, I'm going to pass on the fertilizer.
(I could, however, use some Photoshop on the wrinkles! Whoa! Nice, red, wrinkles woman!)
Uugh! Gah! Ewww! No! No! No!
This is the sound of me throwing a temper tantrum. Yes...me... a grown woman, throwing a temper tantrum. Please, allow me to explain:
I haven't had a hair cut since we've been here in Illinois, at least not one that didn't involve me standing in my bathroom with a death grip on the electric clippers, cursing everything known to man, while buzzing off what you maybe, might, conceivable refer to as...my hair, or what's left of it.
(Why, you may be asking, don't I grow it out? Wouldn't long, thin hair be better than short, thin hair? Haven't I ever heard of a comb over, you ask? Well...have you ever seen the Crypt-keeper? There's your answer.)
In Utah, I had a couple of lovely friends who had salons in their homes, who knew me 'before', and where I felt comfortable getting my hair cut. Here I have nothing like that and I have not been able to bring myself to go sit down in a salon full of women with beautiful hair and let total strangers try to act natural and not gawk at my pathetic little scalp. It is humiliating just to think about it.
So when it became apparent that I was long overdue for a real trimming, the best idea I could come up with was a barbershop. Still, plenty of apprehension, but desperation and common sense were coming up on the inside and getting ready to steal the lead. I had no choice but to act like I was with them as they crossed the finish line.
So yesterday, Mark took me to the barbershop. And, it wasn't my favoritest thing in the world. Especially the part where the barber swung my chair around, stopping me only when I was face to face with a guy who was waiting for his turn on the bench adjacent my chair. He was a very talented finger tapper and took a sudden interest in the ceiling. I'm not sure what was up there, but probably not a girl in a barber chair looking all butched up.
Anyway, so...I just closed my eyes and repeated in my head "I'm just getting a hair cut, I'm just getting a hair cut" over and over until the tears that were pushing at the back of my eyes went away.
Snippity, snip, snip, snip...a couple bucks for the tip, and we were on our way.
And that my friends, is what makes me say Uugh! Gah! No, no, please....please, not ever again, no.
This is the sound of me throwing a temper tantrum. Yes...me... a grown woman, throwing a temper tantrum. Please, allow me to explain:
I haven't had a hair cut since we've been here in Illinois, at least not one that didn't involve me standing in my bathroom with a death grip on the electric clippers, cursing everything known to man, while buzzing off what you maybe, might, conceivable refer to as...my hair, or what's left of it.
(Why, you may be asking, don't I grow it out? Wouldn't long, thin hair be better than short, thin hair? Haven't I ever heard of a comb over, you ask? Well...have you ever seen the Crypt-keeper? There's your answer.)
In Utah, I had a couple of lovely friends who had salons in their homes, who knew me 'before', and where I felt comfortable getting my hair cut. Here I have nothing like that and I have not been able to bring myself to go sit down in a salon full of women with beautiful hair and let total strangers try to act natural and not gawk at my pathetic little scalp. It is humiliating just to think about it.
So when it became apparent that I was long overdue for a real trimming, the best idea I could come up with was a barbershop. Still, plenty of apprehension, but desperation and common sense were coming up on the inside and getting ready to steal the lead. I had no choice but to act like I was with them as they crossed the finish line.
So yesterday, Mark took me to the barbershop. And, it wasn't my favoritest thing in the world. Especially the part where the barber swung my chair around, stopping me only when I was face to face with a guy who was waiting for his turn on the bench adjacent my chair. He was a very talented finger tapper and took a sudden interest in the ceiling. I'm not sure what was up there, but probably not a girl in a barber chair looking all butched up.
Anyway, so...I just closed my eyes and repeated in my head "I'm just getting a hair cut, I'm just getting a hair cut" over and over until the tears that were pushing at the back of my eyes went away.
Snippity, snip, snip, snip...a couple bucks for the tip, and we were on our way.
And that my friends, is what makes me say Uugh! Gah! No, no, please....please, not ever again, no.
For more on Persistant Chemotherapy Induced Alopecia please see: "The Side Effect That Won't Go Away" tab at the top of my blog and be sure to visit www.aheadofourtime.org
Thank you for sharing! You are awesome!
ReplyDeleteThanks for sharing your experience. What a rough ordeal- and you kept your chin up throughout. Strong woman.
ReplyDeleteI knew you had gone through this from shortly after we met, but living it through your writings was both hilarious and horrifying! As always, I thoroughly enjoy the things you share but forgive me if I hug you a little harder next time I see you after reading this.....
ReplyDelete