Watching and Waiting

Standing on a road I didn’t plan, wondering how I got to where I am.  I want to believe in that still small voice.  I want to hear beyond the noise. – Plum, Need You Now

I am in that lovely place that no wants to be in  – watching and waiting.  You know the place.  It’s somewhere between “blown off” and “definitive.”  You may or may not have an illness or some other disease.  So the doctors call for “watchful waiting.” They test you at regular intervals with the expectation that at the end of a specific period you will have an answer – or not.

I’ve been in the “desert of the unknown” since September 5th.  That’s the day I found out that the unreliable CA125 decided to shoot up from a relatively low 8 to 21.4 in 11 short weeks.  I say unreliable since it’s affected by inflammation and isn’t the best indicator for some women for recurrence. In case you didn’t realize, EVERYTHING causes inflammation; allergies, stress, sprains, strains, foods.  The list goes on and on and on.

When I got my result, the nurse was reassuring.  Dr. Downer wasn’t too concerned since my recent CT showed NED (no evidence of disease).  He attributed the rise to inflammation.  His advice:  come in for my regular appointment, retest in 4 weeks and DON’T WORRY. Right.

I saw Dr. Downer this week.  If you’ve read this blog for any length of time, you know I LOVE Dr. Downer.  He is, in my opinion, the best gynecological oncologist ever.  He handles my sarcasm for what it is; a warped sense of humor couched with fear.  He gets it.  He knows my brain goes into overdrive and races to the bad places that only The Beast can take you.  He takes the extra time to answer every question I have, even the stupid ones.  He lets me cry, rant, scream, question and run through every other emotion.  He also give great hugs.  His nickname is sarcastic.  When I was in chemo, it seemed that he only gave me bad news, while his PA, who I affectionately refer to here as The Lovely Liz, had good news.  It also keeps me out of trouble for mentioning him by name.  But I digress.

At my visit, I mentioned that while I knew I might need to bond with Dr. Downer again one day, I just wasn’t quite ready yet.  He told me that it would probably happen one day.  Ouch!  This was after he explained my watch and wait plan.  Get labs on 10/1, labs again in November.  Any jumps of 3 points or more for 2 consecutive tests mean a PET scan is in order.  A huge jump above normal (over 34) gets a PET scan. Otherwise it’s just pesky inflammation causing a blip in the testing.

I have spent a lot of time thinking and worrying.  I have a chemo plan set up – in my head anyway.  It will be on Wednesdays with my Angel in Blue so I can keep up with co-ops.  I have been blessed with an amazing support posse – Coach Cathy, Sista Sue, Other Mom Kelley, Miss Renie, Aunt Denise and Prayer Warrior Linda.  These women have been my constant source of encouragement and I love them with an unfailing love. My DH is straddling the line between fantasy and reality.  He has to.  Balance has to be maintained in our relationship.  I have shared the news with Mr. B and the Ultimate Bengal Fan.  I hate that they might get sucked back into my private hell.  Moms are supposed to keep their kids safe from monsters.  How can I protect them from The Beast?

I am withdrawing.  My Coach has called me out twice on this.  She’s figured out when I put on the happy face. Mom Kelley has wiped away tears when they just won’t stop.  There is no oasis in this no man’s land.  My tree is no where to be found.  I’m like the nomad the Ultimate Bengal Fan is learning about.  Nightmares haunt my sleep.  Every ache and pain is accompanied by irrational thoughts.  Thus my house is less than sparkling.

I wish I was one of those people who forgot about food and cleaned incessantly when stressed.  Instead I eat anything that might remotely look like it could be dipped, enhanced or mistaken for chocolate. I spend time playing games on my Kindle.  I struggle to write a coherent sentence.  I’m scared, but afraid to acknowledge it.  If I acknowledge it, it might be real.  Let’s face it, reality tends to be overrated.

If you need me, I’ll be chasing my friend NED around no man’s land.  I’m the one  with a large mocha in one hand and Russian dark chocolate in the other.  A girl needs to keep her energy up while jumping to conclusions.

The Flip Side of 50

Yesterday I turned 50.  I’ve got to say it’s an ugly number – a very ugly number.  Who wants to tell the world they’re a half century old?  I had trouble telling the world I was 30.  Imagine how I choke on 50.

Yesterday, I had a good day. The boys behaved – mostly.  My B-man youngest did his normal stubborn routine with math and didn’t like my choice for dinner (Max & Erma’s).  We had sundaes at Culver’s.  There’s nothing like thick and gooey hot fudge over smooth vanilla custard with a sprinkling of Andes mints on top (grasshopper anyone?).  I got lots of birthday wishes on Facebook and wrapped up planning my elementary World History class.  My oldest gave me the best birthday present ever!  He gave me a hug and told me he loved me.  Sweet words to this momma’s ears coming from her mostly stoic 11 year old (stoic only when there’s no sporting event involved).

Today, life returned to normal.  B-man and I fought and I’m faced with sending him to school (I threatened, so I’ve at least got to attempt to follow through).  The boys broke a CFL.  B-man hated dinner and refused to eat and the Ultimate Bengals Fan is tired (he’s always tired) and is whining because his lamp doesn’t have a light bulb (the aforementioned CFL bulb).  I hear the shower and I’m waiting for something to go wrong.  We’re due.  Everything else has gone wrong.  I can hear the gnomes rustling in the landscaping, chomping at the bit to wreak havoc.

Despite the bad day, I really know what’s causing my bummer mood.  I had my labs drawn at the cancer institute today.  Despite having a “clean” CT scan last week, I still feel like crap.  While I’m waiting to get weighed (no stress there, right?), the alarm goes off indicating there’s “an event” with a patient.  Event is such a euphemism.  Event can mean anything from throwing up to full cardiac arrest.  I had a couple of “events” while in chemo.  Mine involved sweating profusely, itching and being lightheaded.  Never needed the rapid response team, but I did get to meet several of the other nurses at the Center.  They’re all very nice.  I discovered it’s a great way to get individualize attention from your nurse.  But I wouldn’t recommend it.  They like it so much better when you fly under the radar.

Right now I’m waiting for that dreaded number – the CA125.  I can’t decide which is worse.  Weighing yourself after strictly following Weight Watchers and exercising your butt off only to find out that your body had the audacity to gain weight or having your CA125 bump up from 6.7 to 8.3.  Keep in mind that anything below 34 is a normal CA125 reading and it fluctuates depending on stress, inflammation, the wind direction and a whole host of other factors.  “It’s a tool.”  “It’s a measure.”  “It’s a guide.”  Take your pick.  I’ve heard them all from my oncologist (aka Dr. Downer) and his staff.  Here’s what it is – it’s a number.  And as I’ve said before, it’s the only thing I can use to track my disease unless it’s active.  Oh wait, they use the CA125 to track it when it’s active too.

I am in full throttle, pissed off mode right now (excuse my language).  Anyone who’s had cancer can relate.  It’s one of those days when you want to hurl obscenities at the universe for the crappy hand you’ve been dealt.  And it’s not just the cancer hand we’re talking about.  It’s the infertility, the obesity, the debt, the male mind, menopause, your own deranged mind, the government and anyone or anything else you can remotely tie to your insanity.  No one gets it.  Your kids think you have morphed into the most psychotic and meanest mom on Earth (I have proudly worn the mantle of Meanest Mom for years.  Just means I love them enough to make their lives miserable).  They gladly go to bed on time, even early,  to escape your insanity.  Your husband will wash dishes, anything  to avoid dealing with the deranged woman who told her child he could play with  his buddies until dark despite not having had dinner then proceeded to feed him the free chocolate chip cookies she got for her birthday dessert for dinner (true story.  I just did that), so she doesn’t binge on them the night before weigh in (how do those stupid cookies even know my name?).

So now it’s quiet.  Everyone has gone to bed to escape the maniac at the keyboard.  I have prayed quite a bit today.  I think God likes it when I wallow in my insanity.  It makes me appreciate the normal life He’s given me. Tomorrow I will  get up, weigh myself, drink my coffee while doing my devotions, then read the paper.  The boys will get up, school will start and I will once again explain to the Ultimate Bengals Fan why good grammar is so important and why Mr. B must work on finishing 2nd grade math now that he’s in 3rd grade.  Laundry will be washed, bathrooms will be cleaned, floors will be mopped and meals will be planned.   Life will follow its predictable pattern. All will be right with the world even if the number goes up.

That’s the flip side of 50.

 

March Madness

I have a love/hate relationship with March.  The B man’s birthday is March 14th and is, of course, prime party time at the Giess household.  The fact that there are 3 other family birthdays in there just add to the festivities.  My mother-in-law’s is the 1st, my oldest niece’s is the 9th and my brother-in-law’s is the 29th.  It’s just one big party.  It’s also the time we start planning for our next homeschool year by working on schedules.  On the flip side, I begin to go into panic mode about what I may NOT get done in school.

I hate March because my oldest becomes OBSESSED with March madness.  I don’t like basketball to begin with so bracket madness just drives me up the wall.  Having a sports obsessed son is tough for a mom who believes the only sport worth spending any time on is football, although I love watching B to play soccer.  I also hate March because John and I both lost our dads in March.  It’s been 5 years for John and will be 8 for me at the end of the month.  It’s a tough time for both of us and makes us think about our own mortality.  We’ve both been mad at God, yet realize it was His love that took away their suffering.  My biggest hate has to do with my last chemo treatment, which was March 15, 2013.

Now, you would think that would be a reason to celebrate.  Woo-hoo – ditch the chemo and bring on the hair.  To some extent, that’s true.  However, it was my last chemo treatment that pushed my battered body over the edge.  It was the last treatment that gave me permanent neuropathy and pushed the bones into osteopenia.  It killed the last of the good brain cells.  It exhausted me.  And I’m still waiting for my body to decide to revert in some way, shape or form to its presurgical levels.

Tomorrow I have my one year CA-125 test, then I see the oncologist the next day.  I am one year into my two year quarterly dance with the oncologist.  For some reason, I feel a bit complacent this time.  It could be that I’m exhausted after an extremely busy weekend or maybe I’m just getting used to the ups and downs of the stress of OVCA.  Or maybe I’m just tired of waiting for the time bomb to go off.  If it wants to, it will and my spending one extra iota of effort on it will get me nowhere.

Tuesday will be the first time John has not attended an oncologist’s visit with me, which may indicate a touch of madness on my part.  I want to see if I can do this on my own. Since my CT was clear, I feel fairly confident that the CA-125 will be within normal ranges so I’ll just get the standard lecture about my weight and needing to exercise.  On the other hand, John is only 10 minutes from the oncologist’s office so if things go to crap he’s fairly close.  Methinks I may be growing up on this journey with cancer.

Last week our small group talked about going out of our comfort zone and what pushes you out of your comfort zone.  I realized that my comfort zone has increased considerably.  I’ve learned that going through cancer – or any life threatening illness – either makes you stronger or causes you to curl up in a ball.  Actually you tend to do both.  You may be strong, but have days when the ball looks really good.  Talking in front of a crowd? Piece of cake.  Going on TV to talk about international adoption?  No problem (seriously, I did this, but that’s for another blog post).  Join another co-op and teach writing?  Bring it on!

What has shifted is what makes up my comfort zone.  While I used to jump at every chance to write, now I’m more selective.  I am currently working on the new brochure for the Ovarian Cancer Alliance of Greater Cincinnati (aka Cincy Teal).  That’s a daunting task.  This brochure will touch many potential cancer patients or family members.  It’s tough to take the cold facts and make them not seem so daunting, even though they are.  How do I write about something so devastating without making it sound so hopeless?  I am also creating a second brochure for newly diagnosed patients called “Follow the Teal Brick Road” (without the Munchkins).  It’s designed to be a piece to give newly diagnosed women an idea of what the teal road is like.  When I think about that, that’s madness!  Who am I to tell another woman what her journey will be like?  There are some women, like those in Cincy Teal, who’ve hit OVCA head on, showed it to the door and now raise awareness.  I know there are others who just want to get as far away from it as they can and never want to hear another word.

When you find out you have any kind of cancer, your world is rocked.  OVCA just rocks it in a different way.  There aren’t many people (statistically speaking anyway) who face it every year so you tend to hear only the bad.  When you’re trying to put together a piece to bring some hope, that’s an incredible burden.  There’s so little support out there that you feel like the end is near so why bother.  Am I mad to think that I can bring a bit of understanding to someone who’s been told they have a potentially incurable disease?  The line about “If I can help just one person…” is terribly cliché, but maybe it works here.  Even if the woman who receives thinks “I’m not alone,” then I think, perhaps, the endeavor isn’t mad.

March madness takes a lot of forms, from basketball brackets to mourning lost fathers to facing up to a lifetime of cancer on my shoulder.  I am still mad that I got cancer and livid over how it affected my sons and family.  Yet, somehow, I have a peace that transcends the madness.  Yes, God is present through it all, but it goes beyond that.  For the time being I faced the Beast eye to eye and toe to toe and I won.  The win might be short lived, it might not, but it IS a win.  And with that in mind, I forge through the madness and work on facing what God and life have for me.

 

 

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.

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.

The Numbers Game

Cancer is a numbers game. While it is painful, scary and obnoxious, it’s also a game of numbers. And for me, that’s not a good thing. As my husband likes to say, “I didn’t marry you for your math skills.” Numbers make me nervous. We rely on numbers for so many things. They are WAY too logical for me. I like words. They have a lot more flexibility.

My life now revolves around various sets of numbers. The first is blood counts. Every week (and I mean EVERY WEEK), I trek 34 miles to the hospital to have blood drawn. Since my chemo therapy is on the 3-week cycle, two of those visits are just to check my blood counts. I closely follow my hemoglobin number (always low) which tells me where my anemia is that particular week, my platelet count (which tells me how my blood thinners are working) and my neutrophil count. For those not familiar with the chemistry of white blood cells, your neutrophils are the specific white blood cells that are the infection fighters. Those cells are key to chemo. And chemo is not kind to blood cells, neutrophils in particular. Mine are at .7 right now. Normal is 2.2-3.6. That might not sound like a lot, but it is. Low neutrophils mean you go on what I affectionately term “lock down.” I am confined to my cell (home) and not permitted to leave unless it’s to go to the oncologist or the chemotherapy center. It’s a lot like a prisoner in solitary being permitted to use the exercise yard with no equipment. You get out, but you’re still confined.

I follow these numbers because if they dip too low, I need additional treatment. When the red cells go too low, I need a blood transfusion. If the white cells don’t bounce back, your chemo gets pushed back until they do pop up. Then you get a wonderful shot right after chemo called Neulasta. It’s a neutrophil booster, but makes your bones hurt really bad. White blood cells are made in the marrow of your long bones (arms and legs) so you feel like crap from being poisoned, then you get something that makes your bones ache for a day or two. Ain’t chemo grand?

While I follow the numbers, my husband obsesses over them. He has them tracked on his phone. If he hasn’t heard from me on lab days within an hour of the blood draw, he’s texting me about the numbers. Once he gets them, he sometimes calculates the percentage gain or loss each week. This used to bug me, but I figured he is an engineer so he’s into numbers. Then I realized that since he can’t do anything to “make me better,” the only control he has is to track numbers. I’ve learned to just text them and graciously accept his help in keeping them straight.

Before you get chemo, you have blood drawn to ensure that your blood counts are stable. They also check to be sure that kidney and liver function are within acceptable levels. If everything meets acceptable levels, then you get your infusion and the whole 3-week cycle starts again. If not, everything gets pushed out until the whole mess starts again. It’s a lot like being on a merry-go-round that slows down, but not enough for you to actually get off.

There is one number, however, that I obsess over. Anyone who’s had cancer knows why I obsess. It’s my tumor marker. Ovarian cancer has a specific tumor marker called CA125. As a screening tool, it’s notoriously unreliable. Approximately 50% of the women with ovarian cancer will have a normal CA125 reading and about 50% of women without ovarian cancer will have a false positive. All kinds of things skew it, like inflammation, fibroids, benign cysts. Despite it’s unreliability, it’s the best we’ve got right now.

Initially, I thought mine was unreliable. Any reading less than 35.1 is considered normal. My first CA125 run on August 29th was 125. My Gyn told me not to worry since I had huge fibroids and he was fairly certain that they cyst on my ovary was benign. When the test was run again on October 12th at my pre-op visit, it had skyrocketed to 694.3. Obviously, I had a fast growing tumor. I’ve always tried to be an overachiever.

After my diagnosis, my oncologist explained that the CA125 would be a marker to track how my body was responding to treatment. He explained that the first reading would probably not be a good one since I was still post-op and would have lots of swelling. It did drop, however, to 252. Then it was stuck for the next 6 weeks. It actually went up to 258, then back down to 239.4. Despite his assurances that he was certain he “got everything” and had requested over 400 slides be reviewed from the organs and biopsies he had taken, I was certain the monster was still lurking in my body. The numbers game of tracking my tumor marker was becoming my obsession.

Yesterday, I made by every 3 week pre-chemo visit to my oncologist. These visits are usually the same. I answer questions about my side effects, how I feel in general and any new symptoms. My vitals are taken. My normally low blood pressure is always high, another number I obsess about since both my parents have high blood pressure. It’s the fear of the CA125. I was sure it was still elevated and I was going to face a CT scan earlier than anticipated (they are generally done after chemo). After this, I get to undergo yet another pelvic exam. These used to bother me. Now it’s alot like getting my teeth cleaned. It doesn’t hurt and I zone out.

Yesterday, my appointment was with the Physician’s Assistant, Liz. I’ve always liked Liz. She has a wonderful sense of humor and a gentle demeanor (unlike my oncologist). She came in and told me she had news for me. I prepared for the worst. As I said, numbers aren’t flexible and there is no play in the CA125. She then said some of the sweetest words any cancer patient can hear, “Your tumor marker finally dropped!” I bet my blood pressure dropped 25 points on the spot.

My CA125 number is now exactly where it’s supposed to be, slightly elevated. It went from 239.4 before Christmas to 52.6 last Friday. While it’s still high, I am exceedingly grateful to God, Taxol and Carboplatin for getting the number down. My hope is that is will continue to drop and by the end of this mess, it will be below 35 and I can try to get some semblance of normalcy back.

I still don’t like numbers. They are still far too logical and many times make no sense to me. But today I am blessed to have 52.6 be my number.