What’s Your Color?

I promised myself I wouldn’t go there this year, yet here I am. I told myself I have to immerse myself in my own battle and not try to fight any others. Yet, here I am. I know I’m too tired to really fight effectively, but I will try. Someone has to.

In case you haven’t noticed, it’s Breast Cancer Awareness Month. Despite the brilliant reds, oranges, yellows and tans of the leaves and the gorgeous sunsets, all I see is pink. Bubble gum, Pepto-Bismol pink. The Ultimate Bengal Fan commented the other day that orange and pink should not be worn together, and this is the kid who would wear stripes and plaids.

It seems that cancer has been boiled down to a color. What color is your cancer? Are you pink, blue, teal, yellow, purple, green, white or some combination thereof. Are you saving the ta-tas or some other body part? A fellow teal sister on a Facebook group I’m a part of commented on the tasteless “Go Braless” campaign to promote breast cancer awareness. She thought we should go commando to bring awareness to gynecologic cancers. Actually, guys could join in with this as well. Prostate and testicular cancer are below the belt as well.

I think the people who come up with these “campaigns” mean well, but they don’t think things through. When you’re fighting for your life, you aren’t thinking pink, teal, purple or any other color. You’re trying to figure out when you can take your next anti-nausea pill. You’re trying to decide how you can hide the overwhelming fatigue from your family so they don’t worry. Some days you wonder how you’re going to haul your butt out of bed to go to the bathroom, then you hear some perky AM news host talk about how they’re painting the town pink with bras. Hey, I would gladly go braless, but as a former boss of mine used to say “You’ll take your eye out ” (I’m rather well endowed).

I’m tired of hearing about moms who have breast cancer and take care of their families. Lots of people with cancer go through therapy and take care of their families and never receive one bit of recognition. I certainly don’t blog about my journey for the recognition. Truth is that the vast majority of cancer patients deal with their families and some have to work to keep their insurance or a roof over their head. Those are the real heroes. The ones that go through treatment and keep life going. They should get a gold crown. They deserve the recognition. Not that the mom with breast cancer doesn’t – she does. She’s doing the toughest job imaginable while fighting cancer. She just shouldn’t be singled out when there are so many others who do the exact same thing.

Cancer isn’t a color. It’s a wretched disease that destroys your body, mind and spirit and leaves families shattered. If you’re lucky, like I am, you have an incredible support system that holds you close when you can’t do it on your own. I have a God who is immensely powerful to save and holds me close. I have friends who will gladly stay with my children so I can get my infusions. Yesterday I discovered that I am in need of fluids on the weeks I don’t get chemo. This means a 90 minute infusion of saline, along with some extra steroid and anti-nausea meds. My quick 45 minute trip has turned into a “3 hour tour.” Fortunately, the 3 hours I spend affords me a few days of actually feeling good before I descend back into the depths of feeling lousy.

It just seems wrong to try to limit cancer to a color. It’s as if tying a deadly disease to a color makes it less threatening. How can something pink or blue or yellow take lives every day? I guess it’s like a tiger in the wild. They are majestic to look at, but I certainly don’t want to meet one up close.

Fortunately, we’re about halfway through the “pink month.” Then we can get on with life again. Until then, I will politely decline when asked if I want to give to a another “pink ribbon” charity. I will explain that pink doesn’t represent all women’s cancers. And I will laugh at the lack of color coordination on the part of the NFL. Pink shoes with football uniforms just doesn’t do it for me. And don’t even get me started on how much of what’s raised actually goes to patients. That’s for another rant on another day.

The color of cancer is reflected in the eyes of every patient, male or female. It’s reflected in the color of their skin since cancer is an equal opportunity destroyer of lives. Cancer is the plague of the 21st century. The only color I want associated with it is whatever color the cure is. Then, I will proudly wear the color of cancer. The color that caused it’s demise.

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The Present

First, I must give credit where credit is due.  I am liberally borrowing from our pastor, Brian Law.  I am convinced that Brian was brought to our church to minister just to me considering the conviction and love with which he delivers his sermons.  Since this will be the first time I am forwarding this to him, I am acknowledging his contribution up front.

Brian’s sermon had a phrase I’ve not heard in years; “Yesterday is history. Tomorrow is a mystery.  Today is the present.”  Wow!  I can’t change what I did yesterday, and I don’t have much control over tomorrow, but today is the present.  A gift to be opened and savored and cherished.  It’s amazing how quickly I’ve forgotten how special today is.

I have no idea what I was doing last year at this time.  I was in a chemo induced haze.  I have absolutely no recollection of Christmas, 2012 except that the heating element in my oven went out, I somehow managed to make a ham in my crockpot and that I no doubt wanted to be in bed.  I have no idea what gifts I got with the exception of the “Baby Blues” calendar because the 2013 one is sitting in its usual spot.  I can’t even tell you what the kids got.  I have a vague recollection of them opening gifts.  I must have shopped online, but don’t remember doing that either.  I did find a picture of Braeden and I making cookies.  I looked like hell (sorry Pastor Brian).

As I’ve said before, cancer doesn’t end when chemo does.  Even if you end up being one of the lucky ones who has few side effects during treatment and emerges from the experience in one piece with no permanent damage, cancer still lingers.  It lurks in the shadows.  I’ve said over and over that I’m convinced that Satan cooked up cancer in his filthy lab in the Underworld.  It’s something that only pure evil can create given that cancer doesn’t follow the rules – ever.  Mine didn’t.  It took three full treatments and my doctor reaching the end of his rope before the chemo started to work.  Theoretically, I should have had improvement after the first round and no later than the second.  In retrospect, my oncologist realized that my body was still healing from the massive surgery and just didn’t want to pay attention to the “present” it was receiving.  Like the Christmas fruitcake, my body finally accepted the gift, albeit grudgingly.  Not all presents are good ones.  And don’t even get me started on the financial part of cancer.  Let’s just say I’m an expert at begging hospitals for financial aid and can write a tear jerker letter to a physician’s practice to go on payment plans like no one’s business.  Maybe to make some extra funds to pay off my expenses, I should write sob story letters for other cancer patients.

I’ve come to realize that the best presents are small ones.  My youngest son reading to me.  My oldest finally getting double digit multiplication.  A walk around the Vineyard campus on Monday with my good friend Kelley.  A sob session with Cathy.  Finally getting a baseline for my CA-125 (that was a HUGE one).  Getting my INR meter so I can test my blood clotting factors at home.  A clean CT scan is always a present (but that’s a bigger one).  Being able to enjoy a clean house for more than 5 minutes.  Cooking dinner for my family without the nausea.  Walking the entire Power is Teal 5K, despite not being able to walk for the rest of the day and having to ice my tired feet off and on for the next two days.  Writing this blog and having so many people respond is a wonderful present.  Getting my online tutor job is a present, with a huge learning curve.  Paying off debt is a wonderful present.

Strangely enough, I don’t consider my remission a gift.  While God carried me throughout the entire process, the battle is still raging on.  Some of it lies with why I developed stage 1c and others aren’t found until stage 3 or 4 when it’s so difficult to even survive.  Call it survivor guilt or inquisitive nature, but it lingers in the recesses of my mind.  Some tell me it’s my persistent nature or that I was determined to find out why I felt so lousy.  Some call it luck.  Some say it’s God’s will.  I don’t know which one it was.  My guess is that it’s a combination of all of these things.  But let’s get one thing straight right now, cancer is NOT a gift, a blessing or any other positive thing. It’s an ugly disease that eats you from the inside out and wants nothing more than to grow and continue to munch on your remaining healthy cells.  Not to be depressing or anything.  It is what it is – no more, no less.

The present comes from what you do with what you’ve got.  My perspective has changed the further I get from treatment.  I expect the best, but plan for the worst.  I all ready have a chemo plan in place in my head for a recurrence.  This isn’t morbid or dark.  It’s reality.  I’ve always said that while 85% is a great 5-10 year survival rate, someone’s got to be in the 15%.  I don’t expect to be there, but hey, nothing’s promised here.  The promises lie beyond this life.

My current present is working on losing the 50+ pounds that need to come off my frame.  Now I don’t know anyone who considers fat a gift.  But it is.  It’s a constant reminder of what I haven’t done.  It’s a reminder that I’ve turned to food for comfort rather than thinking things through (big picture people tend to do that).  I’ve learned that while writing is my passion in life, moving your fingers doesn’t count as exercise (neither does walking from the counter to the stove while cooking dinner).  I’m becoming reacquainted with my exercise DVDs.  I’d forgotten how good it feels to challenge my body.  Despite the achy feet and legs (and it is a lot more painful), I get a distinct sense of accomplishment from finishing a 2 mile walk.  That’s a gift!  The gift I’m most looking forward to is to be able to finally shop somewhere other than the “women’s” section of the store where the clothes tend to look like they were all designed by Omar the Tentmaker or the 3 Stooges.

I’ve learned that most gifts require a mental awareness of the situation.  I’m sure I’ve missed many gifts because I was too wrapped up in something else.  Last night I really listened to my sons at dinner.  It was a great time.  We laughed and talked on a deeper level.  Yes, we all argue and nitpick, but it was one of those “Wow” moments that I cherish.  My boys are growing up.  As I look at the manger, I want to be more like Mary who after experiencing the miracle of birth and visits by shepherds and angels, pondered all those things in her heart (thanks again, Pastor Brian).

Tomorrow is history, tomorrow is a mystery.  Today is the present.  Open it and hold it close.  There are only so many in life and I don’t want to miss any of them.

 

Bald is Beautiful?

Yesterday, my wonderful husband did a task that no husband should ever have to do – shave his wife’s head.  The dreaded shedding began Friday and I decided to beat cancer at its own game and take matters into my own hands.  Since my head is so big (this was verified by my wig fitter and is in no way any indication of the size of my ego, which has been MIA for the last several weeks), I was unable to get all of it myself.  Enter my hero hubby, John, who galliantly rode to my rescue and clipped me down to within 1/2″ of my scalp.  While I shed some tears as I watch some ringlets fall, I was actually more shocked by the amount of gray in my hair.  Seriously, I have the hair color of a 98 year old woman.  And I should know, my grandma had the exact same color at 98.

While I’m not bald yet, it has caused me to consider exactly what beauty is.  I texted my friend Cathy to tell her I was taking the plunge and she gave me a great piece of advice/warning:  The face in the mirror may be one I don’t recognize.  She was right.  I had no idea who this buzz cut, gray haired woman was.  Sure she had my eyes, but her cheekbones were higher.  Her glasses looked strange and she sure did have a big head.  I knew it was me, but somehow not me.  The face that had stared at me for 48 years in the mirror was suddenly not my own. 

What struck me the most though was how different my being bald was a polar opposite to my dad.  My dad had lost most of the hair on the top of his head by the time I was in high school.  First, he permed it (and I’ll never forget the look on his face when I brought home a group of friends while he was getting a perm – hilarious), then he bought a human hair toupee from one of those salon’s for men.  It looked good, but it always stuck out a little bit in the back.  I remember him getting his hair cut and having the hooks moved up on his head so it would look like real hair.  I also remember my niece, Sarah, pulling it off his head when she was a little over a year old.  The looks on both their faces was priceless.

After my dad went on disability retirement, he stopped wearing his hair piece (that’s what he called it).  He’d wear it on special occasions, but that was about it.  I used to laugh because he looked so young when he had it on, but when he took it off he had jowls like a bulldog.  It’s like his face sagged 6 inches.  He was still good looking, but not in the same way.  It’s hard to explain if you’ve never seen him.  I thought about posting a before and after picture of him, but that would no doubt cause him to spin in his urn.

So when I looked at myself, I guess I expected to see a bulldog.  People who see me and my mom together think I look like her, and I do, to a degree.  But people who see pictures of me with my dad, quickly change their mind.  Not only am I a Daddy’s girl to the core inside, I’m a Daddy’s girl on the outside.  Instead, I have model cheekbones for the first time in my life.  I guess there is something good to this whole chemo thing.

So as I pick the shedding hairs from my sweatshirt and my mouth (yes, I am still shedding), I think that I can finally have a model face.  And I hope I reflect the spirit of my dad.  He had an awesome personality and faced his health issues with a sense of dignity and strength.  While he sometimes felt sorry for himself, it never lasted for long.  There was always something to be done and you just need to pick yourself up and do it.  Move on with life and life will move you. 

While bald is in for guys, it’s not so hot for chicks.  However, the face in the mirror, while I don’t recognize her all the time, reflects back strength, dignity and the face of a Dad who taught his girl to be strong, no matter what the circumstance.  Love you Daddy!

 

Control Issues

So here I am 11 days into my first cycle of chemo.  While I still struggle with some nausea, especially when I’m tired, I feel like I have regained some control over my body.  Maybe control isn’t the correct word.  I think my body is allowing me to have some say over what it does.

The anemia that has plagued me for years is getting worse.  Not only does a low red cell count make you tired, it makes you huff and puff when you try to exert yourself in any way, shape or form.  Red blood cells carry oxygen and the fewer red cells you have, the less oxygen you carry.  The less oxygen you carry, the more fatigued you get since every stinking organ in your body needs oxygen.  So I eat Cream of Wheat – lots of it.  And my hemoglobin drops.  I eat spinach, which is certainly not the tastiest when you are nauseated, and my hemoglobin drops.  Just sitting here typing this makes me feel like I need a nap.  Seriously, blogging requires a nap.

I go to the Community Cancer Care Center (doesn’t that sound nice) every Friday, either for chemo or to have blood drawn.  The blood draws not a bad thing.  They hook into your port (a catheter inserted into your chest, which has a line connected to the subclavian vein) and poof, the blood just comes out.  While I’m sure the blood thinners I’m on have something to do with that, I prefer to think I’m just a good bleeder for the nurses.  I go to this place every Friday like a good girl.  The only control I have is whether I chose to put numbing cream over the port site before they stick me.  I have no choice in tasting the heparin they use to flush the vein first (which also burns like crazy) or where I get to sit.  I just follow like a puppy on a leash.  Now, I love my chemo nurses.  Sharon is a sweet southern belle and holds my hand through any tears I shed.  John reminds me of my own John, tall and thin with a warped sense of humor.  We get along great.  I set it up and get provides the punch line.  And I can’t imagine for the life of me why people don’t like him.  I LOVE him!  I guess I can control that.

Chemo is where you totally lose control.  First they give you a benadryl cocktail to prevent an allergic reaction to your chemo.  Then, they come at you in full hazmat gear to hook you up to something so toxic it takes 3 full hours to drip into your system.   If they drip it too fast, you’ll get sick from the side effect too quickly.  Then after a nice flush of saline, I get the ovarian cancer chemo drug carboplatin, which also requires full hazmat gear.  Did I mention that I don’t get the hazmat gear?  Just my nurse.  Hubby is politely reminded to back away while I am slowly poisoned.  Wow, I wonder if he thought about this possibility when he signed on for marriage?  I’m still debating if this falls under the sickness or worse part of the contract.

So while I get poisoned, I have no control.  They do let me go to the bathroom, which of course you have to do since they are pumping fluid into you so I guess that’s not really something I control.  I can get snacks – from a limited selection.  But I understand Good Sam’s is much better than the standard fair at other chemo centers.  And I have to drink – and it’s not even the good stuff.  Funky tasting water, apple juice, orange juice, coffee, cocoa or tea.  Great selection, but never exactly what I want.  I do like the fact that they let us have junk food – chips, pretzels, popcorn and my personal favorite Lorna Doone cookies.  Just wish they’d let us have Italian Ice, but I guess that’s only for inpatients.  I lived on that stuff when I was in the hospital.

Okay, so I get home and still have no control.  I barely make it to bed and spend the next 4 days cursing my body aching in places I didn’t know could ache and wishing I could throw up, but thanks to the drugs my husband forces down me, prevent that.  My sons have no mom for those 4 days.  I’m just this shell that creeps from the bedroom to the bathroom to the kitchen and back to bed.

The biggest issue I had with my surgery was that I would have no control while I was under anesthesia.  And while my oncologist is wonderful, he is a control freak.  I am stuck on his schedule until March 8, 2013.  Then I hope to bid adieu to the weekly visits to the Community Center.  On March 9, 2013, I get control back.  I can decide where I want to go and when I want to do it.  And I will make those choices, after a nap no doubt.

Ultimately, I realize that while I struggle with the concept of control, I only have a limited amount.  When this whole ordeal started on August 23rd, I put it in God’s hands.  While I’ve tried to pull it back from Him, it never really leaves His capable hands.  On those days when I’m tired and am running on low batteries, it’s God’s gentle hand on my back that steers me through until bedtime and allows me sleep.  It’s God’s nudging that pushes me through the doors of the cancer center.  After all, God blessed me with this life and it’s up to me to use this and all my other experiences to do His will.  And I know it’s best if He’s in control.

What’s a Trooper?

I did survive my first chemo treatment – side effects and all.  Yes, I am tired.  Yes, I am nauseated.  Yes I am cold and feel like I have the never ending flu.  It stinks, yet through it all I survived.

My mom keeps saying that I’ve been a trooper.  My nephew is a trooper.  He spent a year in Afghanistan praying that his unit would be safe.  My dad and my father-in-law were troopers.  Both served in the US Army and both were in Korea after the war.  Actually, their tours were served one right after the other (I can never remember who was there first though).  So I have a problem with being called a trooper.

My dad was a trooper.  I’ve been thinking alot about him today.  The last 9 years of his life, he battled MRSA, pneumonia, congestive heart failure, a heart attack (in Hawaii no less) and a final battle with MRSA that he lost.  He never met his youngest grandson.  And while I know it, I never got to hear a final “I love you and I’m proud of you.”

So I wonder, would Daddy say I’m a trooper now?  Would he be proud of the way I’m handling this ugly mess of an illness?  The one that causes my husband sleepless nights, my sons an incredbile stress to see a sick mom, my mom hours of worry, and my fear that I will overtax my friends’ invitations to help us out?  Would he say “I’m so very proud of you.  Keep fighting.  You just need to take it  as it comes.” Or would he say, “C’mon daughter.  Step it up.  Stop feeling sorry for yourself.  It doesn’t do you or anyone else any good.”

I’m thinking he would do a little of both, depending on the situation.  I was very fortunate that I was a stay at home mom or a student for most of my dad’s illness.  I got to spend a lot of time with him once he retired.  We were always close, but got closer.  He was there to support me and give me a lecture when needed.  I will never forget getting home from our flight from Boston with Kyle after leaving Russia.  My mom and my sister-in-law ran to greet John and Kyle, while my daddy ran to meet me.  It was surreal.  He had been waiting so long for a grandson, but his first reaction was to hug me.

So am I a trooper?  I guess it depends who you ask.  Somedays I feel like a trooper, marching along through this journey called ovarian cancer and others I melt into a puddle of tears.  I’ve realized as I’ve written this that there is no normal in my life, there is only right this minute and how I feel.  Right now, I feel like a trooper.