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.

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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!

Seriously Stupid

Again, this post comes with a preface.  I don’t want any pep talks, sympathy or “oh no, you’re not” messages.  My blog, my rant, my choice.

I am seriously stupid.  Cathy would say I’m forgetful, but no, I have become seriously stupid.  Went to Target today, but scoured the sites for coupons and deals before the trip.  Got them together with my list and headed to Target.  Pulled out my coupons at the checkout.  I LEFT THREE OF THEM IN THE ENVELOPE ON TOP OF THE STACK, meaning I gave Target $3 more than I should have.  Now, that might not seem like a lot of money, but when you consider the $2 I left at Kroger, the $4 coupon I forgot to download for CVS and filling my tank without checking Gas Buddy first and I figure I’ve depleted my budget an extra $12 this week.  Multiply that by 4 and that’s nearly $50 bucks I’m out this month, $600 months for the year (you may want to check my math.  My mom will tell you it’s never been my strong suit).  When I got home I found my mistake and did some serious head slapping on myself (literally) while repeating my new mantra, “Stupid, stupid, stupid!”

While at my oncologist this week, I had a heart to heart with him about this whole menopause thing.  While he agreed that it’s a double whammy to go through instant menopause and chemo, he also said there’s not much he can do.  Normally, he would prescribe a low dose of HRT to offset some of the symptoms, but since I was lucky enough to have an estrogen receptive tumor, that’s off the table.  While my hot flashes are minimal, this whole forgetfulness thing is throwing me for a loop.

BC (Before Cancer), I had an incredible memory.  I could keep an entire grocery list, Braeden’s soccer schedule, a partially written article and my computer passwords in my head at the same time and rattle off any one of them with ease.  Now, I’m beyond stupid.  The cat’s name escapes me most days (it’s Sierra), my children have learned to respond to the snapping of my fingers, then pointing and my saying, “You know who you are.  Come here,” rather than their own name (which are Kyle and Braeden, in case you’re wondering).  My mom has had the same phone number since I was in elementary school.  I actually had to use the phone memory to dial the number the other day (we have it programmed in for those boys whose names escape me right now).  Despite it being on my list for the last 3 weeks, I cannot seem to remember to buy graham crackers because my Kroger decided to move everything around in the store.

I used to be able to write articles with the TV on, no problem.  Now, I have to have it nearly silent to write.  It’s sad because I use music as inspiration.  Now I just type the lyrics, which makes for an interesting aside in the articles.  Writing was my escape.  It’s the only thing I could do better than just about anyone else I knew.  It was my parents’ bragging right:  their published author.  I would just whip stuff right off the top of my head.  I was finally making some money at it.  Not any more, it’s so difficult.  The one thing I had a talent for is gone.  It’s not fun any longer, it’s work and that is extremely frustrating and just reinforces the fact that I’ve become seriously stupid.

Seriously stupid is a side effect of chemo, I realize that.  It’s like neuropathy, except you can’t ignore it.  Unless I’m on my feet for an extensive period of time, I’m pretty used to the numbness.  I’ve learned to type with numb fingers.  You can’t get used to being seriously stupid.  Forget it, yes.  Get used to it, no.

On the OVCA (ovarian cancer) support board, I love to tell people to extend themselves grace when they feel overwhelmed or overly tired.  Grace is not something we earn or deserve.  Grace is God’s gift.  I think I threw my package away.  Either that or I put it someplace where I wouldn’t lose it.  I can’t remember.

I remember reading that chemo fog or chemo brain is real (don’t ask me where) and that it can last for decades.  Yes, you read that right – DECADES!!!!!  So while I am thankful for the toxic cocktail that saved my life, I’d like to strangle the person who wrote the brochure.  They did NOT include serious stupidity as a lingering side effect.

I used to be able to be my quick witted, sarcastic self.  Now I just stare blankly, trying to remember what witty actually means. This is a disadvantage for me since humor is my defense.  I really want this back when I tell someone that I’m in remission from ovarian cancer.  I need to write another blog on that (guess I should write that down) because the looks I get are priceless.

While we’re on the subject of writing stuff down, I have resorted to leaving notebooks all over my house to write down what I need to do.  I do this because I tried to keep a single notebook, but could never remember where it was.  Seriously stupid!  So the notebooks lie around and the short kid with the dark hair likes to draw and write on them, sometimes covering up the things I was trying to remember.  While (bear with me here, I am drawing a major blank right now.  Oh yeah, I remember.  Let’s chalk that up to being seriously stupid.) I applaud the fact that my son is practicing his writing, I wish he’d find a more appropriate place to do it.

I HATE being seriously stupid.  I am fed up.  I am defeated, deflated and just plain worn out.  I knew when I was diagnosed, my life was changed forever.  I never expected this change.  So many things that made me who I am are gone.  I grieve this every day (yes, I do remember to do this).  Unfortunately, there are so few people who understand which makes it that much more difficult.

I hate myself for getting cancer (remember, the title of this post is Seriously Stupid, so bear with me).  When I have a really stupid moment, I try to figure out what gave me cancer despite the fact that my oncologist tells me that he’ll never know why for sure.  I do what I can to ensure it doesn’t recur.  I’m tired of the whole thing, but it will never go away.  The me BC is gone.  Now I have to learn to live with the me that’s AC (After Cancer).  Hopefully, I won’t be too stupid about it.

Changes, They Are Comin’

I am amazed at how much my body has changed in the last month.  I have hair on my head, eyebrows and eyelashes, and have even begun the unpleasant task of shaving once again.  I no longer look like a pale version of myself.  I actually look like a real person!  It’s not disconcerting to look in the mirror any longer.

Of course, now that chemo is over and I’m in remission my doctors required me to make changes.  Sometimes, though, they are in conflict with each other.  My oncologist has strict dietary requirements for me.  Absolutely no artificial sweeteners of any kind, no soy (to the extent possible) and hormone free dairy and meat.  After pricing organic meat, I decided that becoming an ovo-lacto vegetarian looks pretty good.  I have been buying organic eggs for a year now and with the exception of cheese (which is just way too expensive for me to buy completely organic), I have been pretty successful.  Fortunately, my oldest son has never been much of a carnivore so he’s good with the changes.  My hubby is a vegetable lover, but has requested meat on the weekends to meet his carnivorous needs.  My youngest is the pickiest eater on Earth so it doesn’t really matter what we do as long as he can eat a fish stick, hot dog or pizza.

Yesterday, my vascular surgeon started me on Coumadin and started weaning me off my shots I was taking to thin my blood (yippee!).  However, leafy greens have to be limited when you take Coumadin.  Now I LOVE spinach, lettuce and Swiss chard. Limiting me to two servings a day is tough since I eat salad almost every day.  While she has said that she will tweak my meds to meet my diet, a vegetarian diet makes it harder to manage Coumadin.  Thus my dilemma.  I am hoping that I am one of those people that their body just adapts to the Coumadin quickly and I can get on with life.

Then there’s the whole weight loss thing.  My mom once told me that losing weight after menopause is hard, VERY HARD.  Now I know that my mom is nearly always right, and this time is no exception.  My hope is that a plant based diet will make it a bit easier to lose. And I joined sparkpeople to help me on my journey.  As my neuropathy in my feet levels out, I am hoping that I can exercise more to boost my metabolism.  So my oncologist tells me to lose weight and if the other symptoms of menopause get too bad, he’ll consider putting me on progesterone, which has the side effect of weight gain.  I wish this guy would make up his mind.  You can’t have it both ways.

I’ve changed how I look at things.  Things I used to sweat don’t phase me much anymore.  Yes, I still worry about my family and paying the bills, but if the laundry doesn’t get done or if I don’t get the dishwasher unloaded before 9AM, it’s just not a big deal.  I take more time to do things I enjoy.  I have developed a real love/hate relationship with my computer.  It’s how I earn a living, but I realize what a time waster it can be.  I try to journal more, write more articles and hope to continue this blog.  They seem more beneficial to life in general than playing games on Facebook.

The biggest change I’ve noticed is how I face life.  Remission is, by far, so much harder than having cancer.  When you have cancer, you see the enemy and feel like crap because you are actively fighting it.  When you’re in remission, you find that you begin to dread those labs and scans even though they are much less frequent.  The Beast lurks in the background waiting for its chance to strike again.  The oncologist tells you to live your life, but the life you had is gone.  You have this new life and cancer will always be a part of it.  This is tough for people who have never had cancer to “get” and that’s okay.  I’m thankful for everyday that I don’t have cancer.  I’m thankful for every night I get to kiss my boys goodnight, for every hug from my husband, for every phone call from my family, for every hug from a friend, for morning I wake up.  I’m content with my life.  I was always discontented before.  I still don’t know what God has in store for me, but it’s good and that’s enough.

I like being content.  That doesn’t mean that the boys don’t drive me nuts, that John and I don’t argue, or that I agree with everything everyone tells me, I don’t.  But I am content with what I have right now.  And that’s a huge change, and definitely one I can live with.

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.

The Fog Descends

I love the images fog invokes. It can be romantic, like the fog that lightly swirls around the Golden Gate Bridge. It can be mysterious, like the fog that descends upon the ocean. Fog is dangerous when you can’t see two feet in front of your headlights, like on the stretch of I-71 between Louisville and Carrollton. But my favorite kind is morning fog. The kind that envelopes my house like a blanket and lulls me into feeling that the world is my very own cocoon, with two noisy boys, but my own, nonetheless.

There is definitely a fog that surrounds chemo and it’s appropriately named “chemo fog.” It descends without warning and never at an appropriate time. As a writer, this is disconcerting. Often, while writing articles, I need to find a synonym to a word. Despite having a thesaurus at my disposal in Word, it helps to realize that you actually need one. It’s also helpful to know the meaning of the word. Or to be able to actually come up with a word in the first place. It happens in conversation all the time. A few weeks ago, John and I were on our way to chemotherapy. He said the roads were better than he thought and we might even be early. I told him not to . Then I went blank. Absolutely blank, just like a new painter’s canvas. And I stayed that way. The longer I stayed that way, the more frustrated I became. The more frustrated I became, the more the fog descended. Eventually, I let it go. Not surprisingly, about two in the afternoon, I yelled “jinx it!” After the obvious strange stare, I told my hubby that those were the words I couldn’t think of in the morning. He smiled and nodded. This was not his first encounter with my chemo fog, but for right now it’s the only one I can remember.

I realized earlier this week that I would LOVE to be stuck in an actual fog. In a way, I am. I can’t really travel anywhere. My big adventures this week were to get my taxes done (thanks for the refund Mom), driving Kyle to guitar (in which I stayed in the car after driving Braeden through Dunkin’ Donuts for a treat since he has a cold), and, my personal favorite, having labs drawn at Good Sam (you know what they say, a week without driving to Good Sam is like a day without sunshine). Next week looks even more exciting. I get to drop the boys off at co-op and make two trips to Good Sam: one to the oncologist and one for chemo. It just doesn’t get better than that!

Seriously, I would love to be stuck with my computer, my Bible and a fridge full of food for about a week in a cabin alone surrounded by fog. It would keep me from seeing what I’m missing. Being stuck inside while everyone else is playing outside stinks. Missing co-op every week stinks. Having to keep my kids home because Mom can’t leave the house stinks. Now, if my house was actually clean it might be better, but I’m too tired to clean most of the time. Well, too tired to do a decent job at it. My house has a perpetual cyclone (actually two) that doesn’t understand what “pick up your toys” means (yes, cyclones play with toys). If I was in a cabin, it would be clean. No cyclones, no mess. And I would probably get one that had housekeeping service a couple of times during my stay. With my luck, housekeeping wouldn’t be able to find the cabin because of the fog. But that’s okay, I wouldn’t need to be pleasant. I could live blissfully in my fog.

That’s what I really want – to be alone. Alone with my thoughts and to work out my feelings. I have found that I really have a lot to work through and I don’t have a great deal of time to actually do it. Being with people is exhausting. I am also trying to figure out exactly how I am going to incorporate dietary and lifestyle changes that will need to be made within the next several weeks. The thing I reflect most on is the one that will no doubt make the least amount of sense to anyone who hasn’t experienced cancer. What am I going to do when treatment is over and I go into maintenance mode?

My life has been dictated to me since August 22nd, the day my tumor was found. I have been scanned, operated on, infused, stuck, probed, medicated and a whole host of other things that politeness prevents me from mentioning here. Doctors and nurses have told me where to go, what to eat, how to dress, when to sleep and kept me medicated throughout the whole thing. It’s actually like being enveloped by a fog of medicine. Eventually, like fog, this too will dissipate and my life will be mine again – or so I hear. And when I can decide what I will or won’t do, what I will eat or not eat, and toss the support hose and blood thinner shots, it will be a shock. I know my life will never be totally mine again. The Beast will always be there lurking in the background and I will have a few days each year dictated by my oncologist for scans, labs and check-ups, but for the most part, it will, once again, be my life.

Now once you’ve been limited, having freedom can be intoxicating. For me it’s just scary. I will scrutinize every move I make because the Beast lives in the fog. You see the fog, but not what lies beyond. While the fog will lift, I cannot afford to be complacent and let the Beast take control physically or mentally. While the chemo may eradicate the cancer, my emotional and mental wellbeing is forever altered. Every doctor’s appointment will have me on pins and needles wondering if the Beast has returned. And if it doesn’t return physically, it will have invaded my psyche and I will have to work to push it back into the fog so it’s not a constant figure in my life.

So while the fog envelopes me now, I need to realize it won’t be around forever. The sun will eventually return and burn it off. And while it’s gone, I need to embrace the warmth and allow the fear and doubt to disappear with it.

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.