Reflections

Yesterday I celebrated my 49th birthday.  There was a time when I would cringe at the thought of being 49, despite the fact that I have a couple of friends who have crossed over the half century mark.  As with many birthdays, I reflected on the past year.  What a ride it’s been!  Last year I didn’t enjoy my birthday.  I’d just found out about the mass on my ovary and, despite being 7 weeks from confirmed diagnosis, I knew I had ovarian cancer.  I was worried and obsessing over everything.  I analyzed every pain and twitch.  I poured over research and websites.  I stopped living and started planning for what I thought would be the end of things.  The picture above shows me on my birthday last year.  My husband told me that I looked sick last year.  He said I look “healthy and vibrant” this year.  Good thing, since that’s how I feel.

I am amazed at what I’ve been through in the past year and have managed to not only survive, but thrive!  My life is a testimony to what God can do when you reach the end of your rope and have only Him to hang onto.  It’s a living example of what it means to be surrounded by people (who are too innumerable to mention) who refuse to allow you to give up even when you want to give up yourself.

In the last year I have learned that I can survive major surgery, a life threatening blood clot, chemotherapy, self injections of blood thinners, more blood tests that I thought were possible, a port insertion, too many trips to doctors to count and more scans than a body should have to endure while homeschooling two boys, keeping the house of a semblance of a schedule and continuing to write.  I have learned that chemo is a double edged sword.  While it saves your life, it takes your memory.  It kills the cancer and numbs your hands and feet.  And I will find out today just how much damage it did to my eyes (I have floaters which appeared when chemo started and are getting worse).  I have done all this while wrestling with the effects of instant menopause without the benefit of being able to have any hormones to help with the adjustment.

I am a warrior in teal.  I want to make teal as prominent as pink.  I posted on FB that since it’s Ovarian Cancer Awareness Month, I was going to try to wear teal every day (today, my only teal is my wrist band, all my teal clothes are in the wash).  I wear it for those who walked before me and paved the way and for those who will inevitably come behind me.  I wear it for my oncologist, his incredible staff and the nurses and aides at the OPCC at Good Sam who saved my life.  I wear it because my Dad would wear it and say no one else’s daughter should ever have to go through what my daughter went through.  I wear it to show my mom that I’m just as stubborn as she is and that I got my strength to endure from her.  I wear it to honor my husband who had to walk a path that no partner should ever have to walk, but did so with the strength and courage to carry both of us.  I wear it for the two boys I am proud to call my sons, who were forced to grow up in ways that young children shouldn’t have to, but did so without complaint.  I wear it for my friends who called, brought meals, sent cards, took care of children, sat with me, cried with me and prayed for my family.  Their presence in my life cannot be defined.

I wear teal because God has a mission for me that I need to grab hold of and claim.  I wear teal because I survived.  I don’t know what the future holds.  Life is so fragile and never goes according to plan, no matter how much we put toward that goal.  Keeping God in the midst of chaos is what anchored me to life.

As I look forward, I still face monthly blood work for Coumadin.  I face quarterly CA125 testing and exams and semi-annual CT’s.  And yes, I do get concerned.  I will become apprehensive before seeing my oncologist knowing that despite the odds, I still might have to face the Beast again.  I look forward to entering a clinical trial for my oncologist in hopes that I can help him determine ways to beat back the Beast.  And I will wear teal for my visits.

So as I reflect on my 48th year and look forward to number 49, I will wear teal and smile.  I have been through so much and come out stronger for it.  I wear teal as a reminder and to show I am better for my experience.  And, I look good in it.

Moving On

As we do most Sundays, we attended worship at Cornerstone Church.  Today was “step up” Sunday for the boys.  Braeden moved up to 2nd grade, his first year in elementary Sunday School without Kyle.  Kyle moved to our tween class, Club 56.  They have their own room and are situated away from both the lower elementary and the youth.  It was a big adjustment for both of them.  John and I are loving worship with our new pastor, Pastor Brian.  He reminds me of my youth pastor.  His sermons are relevant and entertaining, not an easy combination for pastors to master.

Tomorrow we begin our 6th year at KTA (Kitchen Table Academy), the affectionate name for our homeschool.  Since our learning occurs at the kitchen table, it’s given rise to the name.  I really should come up with something that will look better across the top of a diploma, but I haven’t stumbled on one yet.  I still have a couple of years.  I mean, can you seriously see UC accepting a transcript from Kitchen Table Academy?  I cannot believe Kyle is starting 5th grade.  With the exception of some stumbling over double and triple digit multiplication, my son is a practically a middle schooler.  Next year, he will be considered one at Learning Tree, our homeschool co-op.  What happened to that little bundle I brought home from Russia?  I finally understand the old saying, “The days are long, but the years are short.”

We are moving on this year in many ways.  We are starting new grades.  Mom is hoping to pick up more freelance work.  Both boys are playing sports again – Braeden’s soccer team won their first game yesterday and Kyle starts flag football practice Tuesday night.  John continues to hone his project management skills at Children’s.  We are beginning to move on.  Yet, I still get stuck.  In a few weeks, I have my CA125 drawn to track my tumor marker, have my 6 month CT scan and undergo yet another exam.  Yes, it’s preventative and given the results of my last CA125, I really don’t expect anything to show up.  Of course, I never expected to have cancer either.

Pastor Brian spoke about the bad times in life.  You know those times when life just knocks you for a loop and you can’t get back on your feet?  I’ve always known that when faced with struggles, I have two choices.  I can whine, moan and complain or I can face it head on.  Cancer makes you do a bit of both.  You have to face it head on.  It’s now your reality.  But I really don’t see how you can manage to make it through without whining, even if it’s just a little bit.  I chose to cling to God’s promise that even in my darkest hour, he wouldn’t leave me or forsake me.  He would lead me to those still waters and restore my soul.  Yes, I did have those times when I yelled at God, quite a few in fact.  My mentor, Pastor Linda Troy, once told me that God doesn’t care how much we yell at him.  It means we still believe in Him.

When I got the definitive diagnosis, I prayed like I’d never prayed for myself before.  I begged and pleaded with God to heal my body.  I visualized His healing hands.  I did it all right, but I still had a massive tumor on my ovary.  Funny thing is, if I had been healed of just my tumor I still would have had the nasty blood clot in my right leg.  It still would have probably broken off and, had I been anywhere but post-op, I probably would have died.  Hmmm.  Once I had the benefit of a couple of months of hindsight, I saw that.

That still leads me to why I had cancer.  Why couldn’t I have just had a massive benign tumor?  My oncologist told me that we will probably never know what triggered the cells to turn cancerous.  Even if we did know, it wouldn’t change anything.  I’d still would have had cancer.  Okay.  Here’s where choices really kick in.  Do you chose to wallow or do you choose to move on?  My friend Cathy told me I had to move on.  No choices.  I have 2 young sons and a husband.  While they were good reasons to move on, the only reason you can move on is because you feel like you have to.  God wants me to move on.  Granted, He let me have pity parties.  He gave me two wonderful friends who let me rant, rave and cry about how lousy I felt.  I will never, ever be able to repay Cathy or Lisa for listening to me when they had their own lives to live, but they both took the time to let me do what I needed to do.  Then I was able to move on.

Moving on means you accept you are not the same person you used to be.  Unfortunately, I will always have the “C” word in my background.   I feel a strong pull to work with ovarian cancer patients.  I’ve always been interested in healthcare and often write on healthcare topics.  Would I have found my niche without having ovarian cancer?  Maybe.  Did it affect me?  Definitely.  The person who entered Good Sam Hospital on October 17, 2012 is not the same one who left October 25, 2012.  Nor I am the same person who completed chemotherapy on March 15, 2013.  If we are open to things, God will continue to use our best and worst experiences to shape us.

So I need to be moving on now.  Life is about being an active participant, getting in and getting involved.  While cancer will always be a part of who I was, it doesn’t have to be a part of who I become.  And if it comes back. well, we’ll just move on with life and kick it back to where it belongs, in the past.  So we can get on with the future.  Moving on!

The Aftermath

By this time, I really thought I’d feel great.  Well, maybe not great, but at least better.  I’d be walking regularly, keeping the house clean, doing play dates, working 15-20 hours per week consistently and volunteering.  In other words, I’d be doing what I did before October 17, 2012.  Apparently, while the mind is more than willing, the body refuses to cooperate.

While I do keep up with the kitchen and bathrooms, I continue to have dust bunnies and piles of junk.  John and I walk when I’m up to it and I try to keep up with my videos, but neuropathy in my feet and calves often cause me to lay my best intentions aside.  Play dates, while more frequent, aren’t as often as the boys would like, mostly because I’m tired and just don’t feel like driving.  I try to work to help out with the bills, but chemo fog often makes writing difficult.  Volunteering, one of my favorite things in the world, is just hard when your body doesn’t cooperate.  I headed up a station at Cornerstone’s VBS a couple of weeks ago.  I had a blast, but my body rebelled for the next 6 days.

Neuropathy is probably my biggest enemy.  For those unfamiliar with this delightful condition, neuropathy is a constant numbness and tingling that is a side effect of Taxol (a strong chemotherapy drug).  Diabetics are also affected by this condition.  It generally attacks the feet and hands (my sweet sister in teal Lisa, has it up her entire leg).  Mine affects the toes of my right foot and my entire left foot all the time.  On bad days, my calves are affected and the outer sides of my knees.  Really bad days include delightful “electric shocks” that cause my feet to jerk.  John just loves those.  They tend to occur at night when I’m trying to get to sleep.  Despite my best attempts, the jerking keeps him awake.

My hands are also affected.  A surgery years ago, damaged the sensory nerve to one of the fingers in my right hand.  Now the fingertips of both hands are numb.  The joints in my hands always ache.  This is not good when you write for a living.  Nor is it helpful when you like to cook and relax by doing cross stitch (and you are desperately trying to finish a baby sampler for your great nephew before he turns 21.  He’s 7 weeks old now, but you get the idea). 

While these are annoying, the clincher is neuropathy of the large intestine.  Yep, your intestines can be affected by neuropathy.  Who knew (well, Lisa did. She’s my guru)?  Apparently, the nerves that tell your large intestine to move things along “go numb” like when you have a limb that “falls asleep.”  Nothing moves and you feel bloated, crampy and eventually get hit with nausea.  It’s delightful as a diet.

Now, you would think that my beloved oncologist would have warned me about this (and he truly is beloved in my eyes), but NO!  It’s a rare side effect and he’d hoped that I would avoid this particular one.  So much for hope, at least in this case.  So now, I have to tweak my diet yet again and deal with a delightful “cleanse” to get things moving.  I won’t bore you with the latter.  Let’s just say, I’m glad I have a large master bath that allows me to get comfy.

My diet, which I changed drastically to begin with, is now chocked with a minimum of 72 ounces of fluid (32 of which must be water at a minimum) daily.  I am still banning hormones, GMO, artificial sweeteners and soy, but now have to add more fiber in the form of vegetables and whole grains.  I was all ready doing this, but I have to bump it up even more. This is his PC way of saying, “Cut the junk food crap from your diet.”  If only chocolate was a high fiber food.  I all ready make my own breads, cook from scratch every night and have pretty much given up going out to eat because it’s a pain to find something I can eat.  I guess I’ll be going out for coffee, hold the desert.

I tend to forget that I had all of my abdominal muscles cut, all three layers, when I had my hysterectomy.  It will be 10 months on my hubby’s birthday next week.  However, those muscles take a LONG time to heal.  I insist on picking up heavy items, then pay for it later.  I only insist on it because I don’t hurt at the time.  Since I really need to lose weight, it’s probably worse.  My doctor has told me that if I don’t get some weight off that I’m a “hernia waiting to happen.”  Lovely.  Actually I have lost a couple of pounds with the neuropathy. 

My friend Cathy reminds me all the time that our bodies do not heal on our schedule.  She warned me in the spring that I would probably not feel good on a regular basis until the end of 2013.  While I was skeptical, I shouldn’t have been.  She’s been there.  She hit the proverbial nail straight on the head.  I should know better.

The aftermath is what it is.  Today I don’t feel so great.  I know I need to gear up to clean out.  I need to take care of myself.  I remember my dad saying the same things.  Do what you can when you feel great.  Rest when you don’t.  I’ve always been a slow study.

Everyone’s aftermath is different.  I am learning that there were things I used to do that are harder.  But a lot of things are easier.  I am more specific when I talk to God.  I am much more likely to say yes to playing games with the boys.  I spend more time journaling, even when my hands hurt, since it helps organize the chaos of my chemo brain.  I value spending time with my mom more than ever, particularly since she gave up so much to stay with me in the hospital and during my recovery.  Walks with John are sacred time.  I love visiting my mother-in-law.  She bent over backwards to take care of us long distance.  I don’t take anything for granted.  Nothing is guaranteed.  If that’s what I take away from the aftermath, then I think I’ve learned my lesson.

 

Processing Life

I have had a serious case of the grouchies for the last week or so.  I couldn’t figure out why.  I know funds are tight (when aren’t they?) and the boys are perpetually tired (golf camp, July 4th, VBS and all the other summer fun), especially since they won’t sleep in, but that didn’t explain why I felt the need to dive into every box that remotely looked like it might contain chocolate and no soy.  Then, it happened.  Last night, I just dissolved into tears when I realized why I was grouchy.  My brain is processing and it really doesn’t like to do that.

I’m convinced that having cancer is a bit like childbirth, although I’ve never had the pleasure of childbirth.  My friends tell me that childbirth hurts, A LOT!  But after they see that sweet little face and get home and bond with their little bundle, they forget how much it hurt (thus the explanation for having more than one child).  With cancer, after you have a few months of remission under your belt, you forget just how miserable you really were.  Oh, you know you were miserable, you just don’t remember the pain that went with it.

John told me that there were nights right after chemo that he would wake up and make sure I was still breathing (ironically, I did the same thing when he was diagnosed with his arrested hydrocephalus) since I looked so pale.  Obviously I have no recollection of this, nor of much else from my time I spent bonding with chemotherapy.  I realized yesterday that I have no recollection of Thanksgiving, except that it was the weekend John shaved my head.  I also have no memory of Christmas, except that my oven broke on Christmas Eve and I had to make whatever it was I had to make in my Crock Pot.  Other than that, it’s all a blur.  It’s like I had one very long day that lasted from November 9 – March 15.

Now, I can attribute some of it to being seriously stupid (my term for chemo fog), but not all of it.  I am convinced that my brain was so overloaded by the sheer enormity of the events slamming me in rapid succession that it just shut down – BOOM!  I know people tend to forget parts of traumatic events in an effort to seal off the pain.  It’s the brain’s defense mechanism.  Maybe that’s why there’s a chemo fog, so patients forget about the crap that goes with the treatment.

While I certainly don’t want to relive those times, I would like to have some memory.  I have a few recollections, mostly of the kindness people extended to myself and my family.  I remember our friend Renie giving up her Mondays to spend a couple of hours at the Outpatient Cancer Care Center (OPCC) while I got fluids.  My friend Cathy drove me to labs and went to my first post chemo CT scan.  She also texted quite often or called.  I know she was checking up and giving me pep talks, but I can’t remember them.  My friend Kelley took the boys for an extended period on chemo days, did school with them, fed them, entertained them and still brought dinner for John and I.  I can’t remember any of the meals, except her lentil soup, which sustained me for several days.  I still need that recipe!

I do remember the care I received from every person at the OPCC.  I do remember every nurses’ name.  My incredible nurse, Sharon, had to take a leave of absence shortly after I started chemo, but when she was there she always took care of me.  So did Kelly, Jacqueline, John, Barbara, Whitley and Paige.  They were my lifeline.  I recently returned to the OPCC after my first 3 month absence to have my CA-125 drawn.  Whitley and Paige gave me a teddy bear because they missed me!  Apparently, on my good days, I made cookies and brownies for the girls.  I really don’t remember this, but I do know that when I felt good, I baked just because it made me feel normal.  This was their way of saying thanks.  I bawled like a baby then too.  I’m not sure if it was because I was overwhelmed by their generosity or because I couldn’t remember doing anything.  I think that may have been what started the grouchies.

Now that I realize I’m processing, it’s somewhat easier, although I’m still in a chocoholic frenzy. Unfortunately, I can no longer blame PMS, but I’m hoping menopause can be somewhat responsible.  I realize I need to take care of myself (it’s kind of fallen to the wayside).  On OVCA boards, I find myself telling people who are newly diagnosed to be kind to themselves, that life will take care of itself.  I need to take my own advice.  I need to try to let go of the past and realize it’s shaped who I am, but it doesn’t define me.  I faced the Beast in the eye and stared him down and, hopefully, walked away a better person for it.

So I continue to process my past, grieve what I lost, and embrace what’s to come.  It’s gonna’ be great!

Dress Rehearsal

I have decided that my life before cancer was simply a dress rehearsal.  And I went through a lot of “stuff” before cancer. I think it’s the “stuff” that gives you the strength to fight cancer.  If you haven’t had a lot of “stuff,” you might not have the tools to really fight well.

When I graduated from college, all my friends were getting married so, of course, I wanted to get married too.  I hated being the third wheel.  Fortunately, one of my best friends got divorced during this time, but she ended up going to law school so I didn’t see her that often.  So I started dating a guy who was wrong for me on so many levels that I could write about it for YEARS and still not complete the explanation (my “sister” Sue can, however, give you the synopsis of why this guy was such a bad choice in 30 words or less).  If I hadn’t had that experience, I could never appreciate what a great guy I married.  And, despite his few flaws, he is absolutely perfect for me.  There is no way my ex-idiot, I mean fiancé, would have or could have stood by me through anything.

John and I have faced unemployment, financial distress, and infertility.  I’d have to say that the financial and infertility issues are a toss up.  Both are long term battles that suck you dry.  Both take an incredible commitment to stay together and work through it.  And both need to not place blame on the other.  We are stronger for being together through it.

Of course, infertility had its silver lining.  I have two incredibly handsome, funny, talented and amazing boys that lived in foreign countries that God gave us to raise.  Traveling to a foreign country is not for the faint of heart.  Three weeks in Russia, while amazing, took its toll on us.  And after two failed adoption attempts, the four days in Guatemala, while incredible, were hard on Kyle and my mom, especially since my dad had only been gone 5 months when we left and we were all acutely aware that Braeden would never get to meet his Papaw.  Reflecting back, however, John and I have decided that Braeden has, in fact, met his Papaw as he seems to be channeling him in a regular basis now.  They are random comments that my dad would have made and I marvel at how Braeden gets his wish to “meet” his grandpa.

Losing both our fathers within 3 years gave both of us a glimpse of the struggle at the end of life.  We put our intentions in place and have medical power of attorney’s and living wills.  And in 2012, we both had to have the talk about “if something happens to me, you WILL honor my wishes.”  John faced a potentially life threatening neurological incident that turned out to be something congenital.  It was, to that point, the roughest 6 weeks of my life.  While I had faced the death of my father and father-in-law, I never expected to face the prospect of being a widow at 47.  I am proud of the way John handled the entire experience (me, not so much.  I was pretty selfish with my prayers).  And it helped us learn why John’s short term memory is not as sharp as we thought it should be. 

Six weeks after that, the mass was found on my left ovary.  I KNEW it was cancer and even told John.  I hadn’t had any tests yet, but I just knew.  Being the incredible husband he is, he went through the entire spiel about not knowing anything and it’s probably nothing since that’s what the doctor says, yada, yada, yada.  But I knew.  Six weeks later, after nearly dying after surgery, I had to tell my husband I had cancer.  He missed the doctor because he had to take the kids to our homeschool co-op that day and was a little late.  I don’t think I will EVER forget the look on his face.  I don’t even know how to describe it.  For a brief moment, I had to be the strong one while he had to face the prospect of a life without a wife.  When I think back on this, I cry.  We’d had so many rugs pulled out from under us and landed on our feet.  This time, we landed smack on our butts and it hurt.

Once I was home, we laid out our action plan.  I would go to chemo and he would work something out with his boss so he could be with me.  We embarked on the longest, hardest journey of our lives and marriage – chemotherapy.  Lots of couples divorce during cancer treatment.  Spouses can’t handle it.  My husband shaved my head, cleaned the house, took care of the kids, held me when I cried and kept his vow of “for better or for worse” and “in sickness and in health.”  We definitely had the worse and sickness thing nailed during those 5 months.

Looking back, neither one of us could have come out on the other side of my battle without having been through all those smaller battles that seemed insurmountable at the time.  Had I not battled infertility and being told “No you can’t have children,” would I have developed the determination to fight and prove my doctors wrong.  Had I not dated an idiot, I would not have had to fortitude to know how to advocate for myself.  Had I not had the experience of losing my dad, I would not have learned how to fight.  Being a mom gave me the will to fight for my kids.  Being married gave me a partner to join me in battle.  Being a daughter of the one true King gave the hope that it was all in His hands.

My life to that point was a dress rehearsal for survival.  This experience has added another dimension to who I am.  Just like the experiences prior to this, ovarian cancer does not define me, but it helps shape the person I am becoming. 

No one jumps up and down and begs for cancer (if they do, they are truly more idiotic than my ex).  It happens, just like that stuff in the other more common phrase.  It’s a monster that takes far too many warriors in the battle for life.  I am thankful that I get to fight another day – every day.  Perhaps that’s the lesson from this battle.  Life makes you a better person.  You can face it head on or let it run over you.  My dress rehearsal taught me to always face life head on.  I wonder what challenges are next?

 

But What About OVCA?

I have read, to almost the point of ad nauseam, about Angelina Jolie’s decision to have a prophylactic mastectomy because of her genetic risk for breast cancer.  Now, before all everyone who has breast cancer, knows someone with breast cancer or has the BRCA gene and has undergone the same procedure decides to send me hate mail, unfriend my mother or send a virus to my computer, I am thrilled that there is genetic testing available for breast cancer and that women have the choice to take matters into their own hands.  Knowledge is power and this is immensely important when dealing with issues of life and death.  Breast cancer, like all cancer, is a beast and takes far too many beloved women (and men) before their time.  I pray for the day when cancer is eradicated in all its forms.

The number of women diagnosed with breast cancer is staggering.  According to the American Cancer Society 232,340 women will be diagnosed with breast cancer this year and 39,620 will die from it – a 17% mortality rate.  When people find out I’ve had cancer, they assume I had breast cancer.  They talk to me about tamoxofen, radiation, neulasta and chest CT’s.  I smile and tell them I am in remission for ovarian cancer.  That’s when the eyes get big, the jaw drops and you can see the words scrolling across their brain, “That’s the one you DIE from!” then excuse themselves from the conversation after telling me how sorry they are.

The number of women diagnosed with ovarian cancer pales in comparison.  Each year, approximately 22,000 women are diagnosed with the disease and 15,700 will die.  That’s a staggering 74%!  Yet no one talks about it.  Maybe if we ignore it, it will go away.  Sorry folks, it’s not going to happen.

After reflecting on this for 7 months, I have come realize that one of the reasons breast cancer gets “better press” (for lack of a more appropriate term) is that breasts define a woman.  Think about it.  Breasts are used to feed babies as well as define our shape.  Lots of men are breast men and TV does nothing to mitigate that stereotype.  If you’ve ever seen me, you know that I am well endowed, so I speak from experience.

A mastectomy changes your shape, even if you have reconstructive surgery.  You can be flatter, perkier, or bigger.  Or you can choose to join the ranks of “flat and fabulous” as a good friend of mine has.  The cancer is always a reminder that you are somehow different than you were before.

On the flip side, ovarian cancer also takes away what makes you a woman – far more than breast cancer.  After all, men have breasts (and do get breast cancer), but they do not have the rest of the plumbing.  When ovarian cancer strikes, it forces a woman to have the surgical removal of everything that makes her female – her ovaries and uterus.  Ovaries produce the eggs needed to create life and the uterus carries that new life until it’s able to live outside the womb.  They also stimulate the production of the female hormones.

A hysterectomy is not like menopause.  Menopause is a gradual, natural process that generally occurs after childbearing years and has some “delightful” symptoms.  A hysterectomy is a drastic thrust into menopause.  Suddenly hormone production is shut down and life changes.  In addition to the major surgery (most hysterectomies for ovarian cancer are traditional with a nasty scar that divides your abdomen in two parts), the chemotherapy throws whatever is left of your sensibilities is thrown out the window.  Basically, you get immediate hot flashes and are crabby all the time.  And the younger you are, the more devastating it is.  Losing your breasts is awful, but losing your ability or choice to have children can be earth shattering.

It’s only been in the last few weeks that I finally realized that there will be no more periods.  While I was never able to have biological children, I did have two miscarriages.  Somewhere in the deep, dark recesses of my mind, I think I held out hope that maybe, just maybe, God would bless me with a biological child.  Now I am finally mourning the fact that I was never able to experience the joy of holding my own newborn.  While the fact that two women I’ve never met have blessed me beyond my wildest dreams with two amazing sons, there was always a part of me that wanted the experience of carrying a baby.  At 48, I would be doing that anyway, even if I’d never had cancer.  I cannot imagine what a 25-35 year old woman would be feeling in my shoes.  The choice was just pulled out from under them.

There is no genetic test for OVCA.  Actually, there’s really no definitive test for OVCA.  We do have the tumor marker test, CA-125, but it’s notoriously unreliable.  We can get CT scans, but only after OVCA has been misdiagnosed as endometriosis, IBS, bladder dysfunction, or any of a number of other conditions.  And while there is only a small percentage of women who get breast cancer actually carry the BRCA gene mutations, there is no genetic test for OVCA.  Mammograms may not be completely reliable as a screening test, but women are encouraged to do self exams which do detect a number of cases.  Unless I’ve missed some research, you can’t do a self exam for OVCA.  Pap smears detect cervical cancer, NOT ovarian cancer.  This is one of the reasons that ovarian cancer is dubbed “The Silent Killer.”  Most women aren’t diagnosed until they reach stage 3 or stage 4 making chemotherapy more grueling, recurrence more common and drastically reducing the chances of actually making it to remission, let alone the magic 5 year “cured” anniversary.

BRCA has a great PR machine that generates an amazing amount of money for research.  Not only does the American Cancer Society do research into breast cancer, the Komen Foundation, Avon and a host of other companies throw astronomical sums of money at researchers.  Let’s face it, any disease that can get grown men who chase a piece of pigskin on a large field (talking football here folks) to wear pink for an ENTIRE month, has got one hell of a lobby.  A friend who survived breast cancer told me shortly after my diagnosis that sometimes she feels more like a “commodity” than a survivor.  Nevertheless, breast cancer has a lot of money for research, patient education and support.  The entire month of October is pink.  A local TV station here is pink the 19th of every month.

Right after my diagnosis, my  mom called the American Cancer Society to get information about ovarian cancer.  She was told they didn’t have any because they didn’t devote their resources to a cancer that affected so few women.  Yeah, I get it.  22,000 pales in comparison to 232,000, but tell that to the 22,000 women who will get that diagnosis this year.  Tell that to the families of the 15,000 women who will die this year.  I just to love the color pink.  I had lots of clothes in my closet that were pink.  I tossed them all, except for one T-shirt I keep in honor of my friend Cathy who has stood by me throughout my entire journey (she’s a BRCA carrier and survivor).  I now buy clothes that are teal.  Teal is the color for ovarian, uterine and cervical cancer.  Teal is beautiful and I also look good in it.  I guess I’ll have to settle for the Miami Dolphins and the Seattle Seahawks to wear teal and just pretend they are wearing it for ovarian cancer.  My friend Cathy wears teal to honor my fight.  Actually teal and pink look good together.  There are a couple of groups that are pushing to join pink and teal.  Doubt it will happen though, since we don’t have the PR machine.

So I fight for recognition by volunteering for groups like the National Ovarian Cancer Coalition and the Ovarian Cancer National Alliance.  I will be walking in the local ovarian cancer walk in September to raise funds for research (my oncologist gets funding from this walk to continue his research).  I post things on Facebook.  I talk to groups.  I pray for a cure.  I do anything I can for my sisters in teal.  We are a small but mighty group.  We are fighters.  And we continue to be overshadowed by our sisters in pink.

Angelina, I am thrilled you brought BRCA testing into the open.  I hope it helps women get testing and saves lives.  But please don’t forget about your sisters in teal who are fighting just as hard, if not harder, than you are.  We’re here fighting and don’t want to be forgotten.

It’s Outta’ Here

It’s official – I’m in remission.  I found out on Tuesday, but have been waiting for my doctor to call and tell me the radiologist read the wrong scan.  Actually, he read the right one because, of course, it showed an anomaly.  So I’m off for yet another scan this coming Friday.  While I’m sure the spot on my vertebrae is nothing more than a remnant of an old back injury, it’s tough to shake that evil little voice.

When you find out you have cancer, you suddenly become Atlas.  You carry the weight of the diagnosis on your shoulders.  While I found I was able to gain a sense of peace about my own mortality, I did not want to leave my husband or children under any circumstances.  In fact, my prayers often focused on them rather than myself.  It still seems selfish to pray for myself, unless I’m seeking what God wants to teach me or how He wants to use me through this experience.  I know I had a whole brigade of prayer warriors behind me and that may be why I never felt the need pray for myself.  I carried my fears, and those of my family, on my shoulders.  This is probably why I have a bone spot on my spine!

Eight months ago, shortly after the mass was found, I imagined myself with Jesus on the beach, just like the “Footprints” poem.  I was in a panic begging Him to heal me.  I had two boys who needed their Mom.  I couldn’t put my own Mom through the stress.  What about John’s job?  What would happen to the house?  Eventually Jesus got me to sit down next to him on the beach and watch the waves.  He built a fire and we sat.  I still asked Him to heal me, but he just smiled.  He promised to be with me, no matter what happened.  And while I still was scared, I knew God had the situation in hand.

Looking back, I know He did.  In retrospect, I realized that if He’d healed me, I would still have had the blood clots in my leg.  The clot that broke loose and traveled to my lung so the recovery room staff and surgeon could take immediate action.  And one of the top vascular surgeons in the city “just happened” to be in the hospital to oversee my care.  Had I been healed of the tumor, the clot would have not doubt broken off and I could have died at home.  God knows so much better than I do and sometimes I need a 2×4 to the head to remember that.  I would have preferred to skip the whole chemo thing, but God has plans for that experience as well.

The clean scan lifted the weight from my shoulders.  It could have been lifted a lot sooner if I would have let it.  Now I stand a little straighter and step a little lighter knowing that the cancer is gone.  Jesus has put out the small campfire on the beach and asked me to start walking with him again.  As we start off on our journey, I sincerely hope I remember what I’ve learned.  Life is not a path meant to be walked alone or even with family and friends.  It’s meant to be walked with the One Who Knows All.  I’ve have learned so much so far.  There was a time I would have been afraid to find out what God had planned for me.  Now I can’t wait to see how He wants to use my experience.  It’s time to get outta’ here and see what God has in store.