Metamorphosis?

“Two roads diverged in a wood and I – I took the road less traveled by, and that has made all the difference.” – Robert Frost

Today is the first day of Lent. In the days leading up to today, the Ultimate Bengal Fan and the B-Man have been trying to figure out what they wanted to give up for Lent. The Bengal Fan ultimately chose chocolate, which is tough for my chocoholic son, while my youngest one had yet to settle on something. It’s run the gamut from refraining from throwing soccer balls at his brother, to broccoli (which he doesn’t eat anyway) to changing his underwear daily (I really do NOT want to know). He eventually decided on Lego.com. This is HUGE! I am really proud of him. He spends his entire computer time on Lego.com. I chose a different route this year.

The choice came upon me slowly. I have known for nearly two years that something needs to change in my life, but it’s a nebulous idea. There’s nothing solid to grab onto. Yet, I know God is nudging me. I took a huge step when I signed up for a Women’s study at church called “The Life Ready Woman.” The title intrigued me. Seriously, how much more ready for life can you be than to face ovarian cancer head on while homeschooling two young kids, make it to remission and carry on? Apparently not as ready as I’d like to believe.

In the interim, I’ve let myself go. My weight has ballooned to an all time high (and as open as I am with my readers, I’m NOT sharing that number) and I move less than I did before cancer. Now I could play the cancer card and say, “Well, I have neuropathy and my joints hurt, blah, blah, blah.” And it would be true. However, I’ve lost my love for most things. Oh sure, I love my boys beyond measure, I love my husband more than ever, and I’m surrounded by an incredibly supportive group of family and friends. But why do I feel so empty?

I know why. I’ve allowed myself to fall into a sort of complacency about things in my life. After all, I’m in remission from one of the most deadly forms of cancer. Woo Hoo! I have the right to kick back and rest on my laurels. Well, the world would say that, but I think God is calling me to so much more. And as I’ve said before, He generally needs to use a 2×4 or other heavy object to get my attention. This time, however, it was my feet and a scale.

I had lost some weight this summer and I did it mostly by exercise, which was painful. As summer turned to fall, my back and feet would hurt as soon as I got up the street to the corner. Walking wasn’t fun. Nothing was fun. I shut down and opened the bag of M&M’s. Fall turned to winter and I closed in on myself. It was just me and my coffee and chocolate. The treats I had right before a chemo treatment – because in a cruel twist of fate, chocolate gave me heartburn during chemo – were my secret allies. They made me feel good, or at least I thought they did.

Earlier this month, I made the decision to finally find out why my back and feet hurt. I found a great PT office that looks at the whole body, not just what hurts. Not only do my feet hurt less, but my back feels better. I still have an incredibly long way to go, but at least I can go up and down the steps the right way (alternating feet) and not like a two year old. It’s the little things. Walking “funny” because of neuropathy screws up your entire lower body mechanics. I’m working on muscle memory to get a new normal (there’s that phrase again!). My goal – the 5K OCAGC walk in September without pain.

So for Lent, rather than giving up something, I’ve decided to DO something. I am spending less time ruminating on the aftermath of cancer and more time on what the next chapter holds. It’s too easy to focus on where I’ve been. It was hell, plain and simple and I know that the Beast can come knocking at any time. I already hear its footsteps since I have my 3-month check-up and labs early next month. I’m not a betting person, so I try to ignore the odds, even if they are in my favor for the time being. Learning from the past is one thing, dwelling in it is another.

So with the courage I have been given, my Lenten journey is to begin a transformation; a metamorphosis of sorts. My goal is to muster up my courage daily and dive into this new life God is calling me to. Like a tadpole or caterpillar, it takes time. It won’t happen overnight. My goal for each day is to just find a way to not fold in on myself, but to do something that takes courage. For me, eating less takes courage, since food is my comfort. Cleaning my house takes courage (my beloved calls me a pack rat and he’s right). Writing takes courage. Spending time with God and listening takes an incredible amount of courage. Think about it – you ask God what He wants you to do and when He answers you should do it. I think I’m guilty of asking, but not really wanting to know what He thinks. It’s like if I ask, I’m good. So not only will I ask, but I will seek to act after the 2×4 smacks me in the head. I’m hoping after this period of reflection is over, that I may find myself being changed into a woman that God is proud to call daughter.

While cancer may have caused me to take the “road less traveled,” I need to let it make a difference. I’m getting ready for the next adventure. Who’s with me?

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Life’s NOT a Blessing

Before the fireworks begin, please note that I asked my pastor to read through this and he did. I am not trying to be sacrilegious or start any battles. I didn’t ask for his blessing; I just wanted to be sure I wasn’t crossing any boundary lines. Enough said, let’s move on.

Anyone who says cancer is a blessing is an idiot. It’s not. It’s a horrible disease that takes far too many people and kills them, maims them, disfigures them or just messes with their minds. Cooked up in Satan’s kitchen, its sole purpose is to obliterate any cell that does not share its mutation. I believe the correct terminology would be “Conform or die!” It’s not content to just tear down the patient. No, it has to wreak its havoc on entire families; often ripping them to shreds and leaving nothing that resembles any sort of previously known reality in its wake. It’s like living through an earthquake with just a few minor cracks and broken objects, then having an F5 tornado blow through and destroys whatever’s left of your home and those you care about.

The destruction doesn’t have to be immediate. It can occur months or years later. Ask someone who’s been in remission for 5 or 10 years how they feel about cancer knocking and saying, “I’m back.” Talk to my friend Lisa who has managed to beat back the Beast for 5 years (YEAH Lisa!), but faces a lifetime of worsening neuropathy, debilitating migraines, bone pain and a whole host of other crap while she raises her two grandbabies (who, by the way, are absolutely adorable). Other people deal with continuing bowel issues, anemia, vision problems, lymphedema, bad teeth, osteoporosis, or who knows what.

Sometimes I wonder if the cure is worth the price I paid. Now don’t get me wrong, I am eternally grateful to God for the healing and the life I have. But I am really ticked off at Him as well. Great, I got cancer, which has deeply affected not only me but also my husband and children. It’s okay for me to get it, but did my family have to suffer? Yes, it was a learning experience and my children are richer for it. I’d hoped a mission trip would have sufficed, but apparently not. There is a deep lesson to learn. Yeah, right. Before my kids could tie their shoes well, they had to learn about life and death. This does NOT work for me. And yes, I know other kids have lost a parent. I’m thankful I’m still here, but mad for those other kids who weren’t nearly as fortunate.

Then there’s the whole, “Well, you’re done with chemo and life goes on,” song. Maybe for you, but not for me. True, there are days when cancer isn’t even a blip on my radar any longer. It’s taken me months to get to this point. Then my feet go numb and well, here we go again. It’s like a crazy merry-go-round created by Phineas and Ferb (guess what my kids watch on Netflix?) that I just can’t get off. Right now I’m struggling with PT. My body is so far out of alignment that to walk without my feet swinging out, I have to physically look at them and will them to move heel toe while focusing on my pelvis and lower back alignment. Seriously, walking should NEVER be this hard after the age of 2.

I’m mad, REALLY MAD! No one gets it. The chorus of “You’re cured. You’re in remission. You’ve been blessed with healing,” are sung by the choir. Choir music has never been my favorite. Give me Switchfoot, Casting Crowns, or Mandisa any day. If God was blessing me with healing, why couldn’t he have gone all the way? No neuropathy, no chemo fog, no digestive issues; just pure healing. Oh yeah, because when I asked for healing from my ovarian mass, he didn’t do that either. Okay, he did, just not the way I asked. I asked to avoid surgery. His answer was an awesome surgeon, but surgery with the added bonus of a pulmonary embolism necessitating a 4 day stay in ICU before I could begin recovery from the 13” incision on my belly. As my beloved Coach Cathy would say, “It’s your new normal. You need to accept it and go on.” And being a beloved friend, she knows why I say, “I don’t like it. It sucks!” She nods and gives me a hug. She grapples with the same issues. That’s why I love her so and always count her among one positive that came out of the whole cancer mess.

You know that saying that goes “God never gives you more than you can handle?” Well, He does. What most people DON’T read is that you can only handle it if you give it over to God so the two of you can handle it together. What if you never wanted it in the first place? The catch is you still need to deal with it. Sounds like a bad deal to me. I didn’t ask for any of this, but sometimes a tough life is the gift that keeps on giving.

I am not turning my back on God nor am I questioning His Sovereignty. He reigns in Heaven and set the universe in motion. I believe that Jesus carried the sin of the entire world of His time and for all time to come until His return so that we can rejoice in Heaven when our work here is done. I just have trouble with the fact that the monkey wrenches of life don’t merit immediate intervention. Yes, I can look back and see how God laid the groundwork for our children through our infertility struggle and my husband through a previous relationship that toxic doesn’t begin to describe. I think that may go along with the prayer that goes “Give me patience Lord, NOW!”

My greatest struggle isn’t over what’s happened. You can’t change the past. It’s what’s to come. I know God is beating me senseless to take this blog and create a book, a study, a series, something with it. He needs to imprint that on the 2×4 He’s beating giving me so I get the idea. I think about Beth Moore and get this glimpse of “That’s it.” Holy cow Batman, putting that much of my life out there is not on the agenda. Wait, not my agenda anyway. Then there’s the whole recurrence thing. Seriously Lord, you put me on this path with the dark cloud of recurrence over my head. Harsh, don’t you think?

So no, cancer is NOT a blessing and I will smack you if you tell me that. I really don’t believe God wants me to look at it that way. What He does desire is that I try to find the blessings that came from my experience. God doesn’t want bad things to happen to us, but they do. He created the world and the natural laws that go with it. We sinned and haven’t been good stewards so now we pay the price. I think God gave me hindsight so that I could take some solace in the journey.

What I have learned is that God brings special people to come along side throughout the journey. Coach Cathy and I knew each other to say “Hello,” and that was about it. Now I count her as a confidant that I can share my deepest, darkest fears with and not be judged. There’s my Facebook friend Lisa, whom I’ve never met, but share a bond with that goes beyond the internet. My boys are blessed with someone they can call “Mom” and I can call friend at any time. Kelley, you’ve opened your arms and heart to my family. You’ve shared my tears and triumphs. Momma Renie, I relied on you like the Mom are to me and felt blessed that I was able to be there for you as well (just don’t do it again!). My sister Sue was a constant presence as she’s always been over the last 30+ years, pushing me to get past the wall. Denise visited and cried and hugged and helped me decorate my tree when I was too tired to do it myself, leaving her own family to support mine.

I still hate cancer and the fact that I face a lifetime of shadows. It’s not a blessing, nor will it ever been. It’s a fact of life for me. Like it or not, this is my journey and I’m sure there are many more 2×4’s to come. Here’s hoping I’m up for it.

Change is in the Air

You cannot have a positive life and a negative mind – Joyce Meyer

After a hectic and less than Merry (for me anyway) Christmas, we were able to get away to Mansfield to visit my mother-in-law and celebrate the New Year with her (thanks Omi!). I managed to talk my partner in life to visit my hands down favorite restaurant ever – the Malabar Farm Restaurant. If you are ever in Perrysville or are able to visit Malabar Farm or Mohican State Park, make a reservation. It’s a localvore’s paradise. But I digress. We were able to have a New Year’s Eve lunch that allowed me to relax enough to finally unclench my teeth which have been perpetually clenched since September 5th.

I’m not sure what caused it, but I think it was the 2×4 along side the head from God that He frequently needs to administer to get my attention. I have been struggling with this new normal that cancer handed me. Everyone has their own mental image of struggle, so let me paint you a picture of my struggle. I am firmly bound in a straight jacket being carried by the men in white coats with my legs flailing in front of me. My hair resembles the bird’s nest that my mother called it when I failed to comb it as a child, my face is red and my eyes are practically popping out of their sockets. I am screaming at the top of my lungs “I AM NOT GOING THERE. PUT ME DOWN!!!!!” Yes, this me – on the inside. On the outside, I try desperately to prove to the world that cancer hasn’t changed me. Obviously, I have been in denial about this new normal.

However, at lunch I found myself somehow at peace. Three words slowly coalesced in my mind – simplify, de-clutter, joy. Those three words were like the lightening bolt I talk to the Ultimate Bengal Fan about (that would be the one that God sends down that says I’m supposed to let him play tackle football). While this one was more figurative than literal (in order to play tackle ball, it will need to be a literal one), it carried the same impact.

My new normal requires that I simplify my life – period. I will never be able to juggle multiple agendas in my mind. Chemo stole most of that ability and menopause took what little was left. I need to make lists – realistic lists – and follow them. I am my own worst enemy when it comes to getting anything done. I create these unrealistic expectations that I know I can’t fulfill on my best day, let alone the days I tend to have. Projects need to be broken down into manageable steps. This is why God gave me an engineer for a husband. He is great about helping me break things down and reining me in when needed.

It occurs to me that the best way to simplify is to get rid of stuff, thus my de-cluttering. Get rid of the clutter (and NOT replacing it), gives me simplicity. Less to clean, take care of, move around, decide who will get it 30 years from now (God willing) in my will, etc. It will make my life so much easier to not have so much stuff. Teaching the Ultimate Bengal Fan and the B-Man is another story, but let’s just tackle one mountain at a time.

I have also added what I call the “joy factor” to my life. The joy factor is basically asking myself a simple question, “Will this add joy to my life?” If the answer’s yes, it stays. If not, it goes. Whether this is actually feasible for the long run is debatable, but for now it’s okay. I realize there are some non-negotiable items that I will answer, “No,” to (like oncology follow-ups, mammograms, editing work for picky clients), but ultimately those things will bring joy. Nothing is more joyful that getting another gold star on your remission chart, a letter stating that your mammogram is unremarkable and getting a paycheck.

I know I’ve written before that ovarian cancer was a game changer for me. It still is. Life as a cancer survivor is one that evolves. The old saying that “Nothing in life is guaranteed,” carries even more truth for a cancer survivor. With few exceptions, no survivor is ever cured. The best we can hope for is a “lifetime remission.”

While I love dancing with NED (No Evidence of Disease), I realize there may be times when his name isn’t on my dance card. So be it. God also added this with the 2×4, you aren’t doing this alone. I have been blessed by an incredible family, an amazing group of friends, and the best medical care team around. Through it all, God is constant. So through the ups and downs of this “new normal,” life is incredible. It’s all in the attitude.

De-clutter. Simplify. Joy.

May 2015 be full of simple joys for you.

The Land of Discontentment

I have been feeling very discontented. It took me a while to latch onto the right word, but discontented sums it up nicely. After sitting on pins and needles for 2 months because of a unexpected rise in my tumor marker, I have been given a thumbs up by my oncology team. I’m back on quarterly testing for the foreseeable future. Thankful, yes but certainly not content with status quo. After over a year in the 7 range, I’m in the 10’s now. Well below the threshold of 35, but not where I was. I’m certainly not content with that.

I’m convinced that stepping on a scale is the fastest way to the land of discontentment. It’s the bullet train of emotion. If it drops, you go to the land of euphoria. If it remains that the station, it’s either a relief or a puzzler. If you gain, you zip straight into discontentment. I gained 4 pounds. I’m not surprised considering the vast amounts of junk food I’ve consumed the last 10 days. I bought into the lie that I could walk the dog 4 days a week and eat whatever I wanted. I walked from the land of healthy into the land of discontentment. I’m not happy, but it’s not unexpected either.

I talked to my devoted husband last night about this nebulous, discontented feeling I have. He was puzzled since he has left the land of discontentment and is on the island of contentment. Seems we’re never in the same place at the same time any longer. Could be that was one of the stops I missed on the train.

When I’m bothered by something, it never comes up and slaps me along side the head. It’s always this cloudy, endless black hole in the back of my mind. It takes a while for the black hole to collapse so I can put words to the visual. My visual today was a huge mass of wires with me tangled in their web. My land of discontentment is covered in computer cables, e-mails and the hundreds of other electronic gizmos that clamor for my attention every day.

I had high hopes for myself when I ended chemo. I wanted to be a different person. I wanted to be the fun mom, the sexy wife, the fabulous friend, the great housekeeper and organizer extraordinaire (quit laughing Mom). None of it happened. I’m still just a Mom, an overweight wife, a so-so friend and my house looks like I have a perpetual windstorm blowing through it. I didn’t change, at least in the ways I hoped I would.

I find that I now have little tolerance for people who whine about the piddly things in life. Who cares if you can’t find a place to park close to the door? Wal-Mart’s out of your favorite cookies? Deal with it. Dropped your dinner all over the bottom of the oven? It happens (and I do get upset about it because tuna casserole is a pain to clean up), but it’s just one meal and that’s why God created cereal (I know my DH, I need to take my own advice). Life is a series of choices. Mull over the big ones, give a second thought to the average ones, and let the little ones fall where they may. I’ve learned not to stress over the B-man’s dislike of generic Cheerios. In the grand scheme of things, it’s piddly.

Chemo made me more distractible. My concentration a lot of days is in the negative zone. Half the time I can’t remember diddly and the other half I can’t figure out why I’d want to. My boys accept the fact that Mom has chemo fog. They even say it when I’m standing in the middle of a room, trying to look like I know what I want, when, in fact, I haven’t got a clue. That makes me sad. Should my kids have to understand what chemo fog is at 11 and 8. I know it’s a joke to them, but to me it’s taken a huge part of who I was. I could juggle lists and appointments with the best of them. Now, the idea of juggling anything other than clean socks is scary and I’m not very good at that either. This is discontentment at its finest.

This morning I realized I needed to find a way to clear my head and get out of the Land of Discontentment. I deal with too much noise. Remember the static noise on TV when the channel was out? For those of you old enough to remember life before cable and satellite this shouldn’t be a stretch, unless you’ve had chemo. Then Google it. It’ll come back, I promise. That’s what I hear in my head; all day, every day. I’ve discovered that’s the National Anthem in the Land of Discontentment.

I made a huge decision. I’m unplugging. My Kindle has been turned off. I’m on a Facebook fast. I’m only tutoring 2 days per week. I’m checking e-mail twice per day. I still text, but have decided the phone is a good way to communicate (remember actually calling someone?). I continue to freelance, but will print off my research and work on it in the dining room where I can actually see out the window. I want to write creatively and cross stitch and play games with my kids. I want to move my body as I actually do something in my house. I’m hoping to lasso the source of the windstorm and try to slow them down.

Life is tough, especially in the Land of Discontentment. Cancer is tough, even after you dance with NED (No Evidence of Disease). You spend a lot of time on the Island of What-If, which is across the Channel of Dread from the Land of Discontentment. It’s like have Charon take you across the River Styx. You don’t want to be on that boat, but you can’t see a way off. Cancer taught me that my life isn’t under my control. I like to think it is, but it’s not.

What I can control is how I look at life and what I do with what I’ve got. Yes, I’m in remission from ovarian cancer. Okay, so I eat healthy (well, I start to eat healthy AGAIN) and exercise. I try to tame the chaos in the house. Uncluttering the physical goes a long way to uncluttering the mind and soul. God won’t talk above the static, but He does talk. He needs me to get rid of the static to hear Him.

When I can finally find the mute button, He tells me to just look around and get off at the next train station. There’s always a train headed back to Contentment. You’ve just got to know when to change trains.

Peaceful, Easy Feeling

Today, I borrow from one of my favorite 70’s bands, The Eagles.  I can hear Glenn Frey crooning now.

Several weeks ago, I chose to undergo genetic testing to see if I had any genetic mutations that would predispose me to further cancer.  I did not make that decision lightly and I shared my choice with only two people outside my immediate family.  My thinking was that if I was a “mutant” (and my friend CB will get my humor here), then I wanted to know so I could mentally prep myself for the future.

Prior to my visit, my husband wanted to know why I would want to know if I did have a genetic predisposition to cancer.  His rationale was, “Would it make a difference?”  Mine was, “Yes it will!”  So at the end of March, I trudged down to the OPCC (Outpatient Cancer Care) where I’d received my chemo and spent a couple of quality hours having my family history dissected.  It was surreal for me.  My mom had gone with me to fill in some of the gaps.  She thoroughly enjoyed learning about all the genetic mutations.  I, on the other hand, was terrified when I saw how many mutations resulted in ovarian cancer.  That’s the difference between the haves and the have nots.  Those that have cancer and are in remission know the scary netherworld they have lived in and will do just about anything to not go back.  The have nots haven’t had cancer and it’s a lot like a science lesson that would inspire Gregor Mendel.  It’s fascinating.

Unfortunately, waiting really is the hardest part (kudos to Tom Petty here).  My mood was not the best in the days after the testing.  I had decided that if I had been BRCA (breast cancer gene) positive that I would go the Angelina Jolie route and embrace my inner flat chested self (I’m sure my loving husband would have objected).  If I had tested positive for Lynch Syndrome (which predisposes patients to both ovarian and colon cancer), I was mentally prepping myself for annual colonoscopies (and this was NOT a pretty mental image).  Of course, I also struggled with how our insurance would treat me after paying for this.  Well, hubby’s employer is still covering spouses – at least for the next year.  I was grumpy, scared and mad.

Of course, all my worrying was for naught, which is not really all that surprising.  Only 12-15% of those with ovarian cancer actually have a genetic mutation.  Those might seem like pretty low odds, except that a woman’s odds for getting ovarian cancer are fairly low anyway (about 2% over her lifetime).  Given my previous experience playing the odds, I wasn’t feeling all that confident.  I mean, what are the chances that a premenopausal woman would not only get ovarian cancer, but also throw a blood clot and develop a pulmonary embolism while in the recovery room?  They are astronomical so I wasn’t feeling all that sure about my chances of not having a mutation.

Once I found out I was “normal,” relatively speaking, I was relieved.  I was enveloped in a peaceful, easy feeling.  My mood immediately lightened.  My ability to deal with stress improved dramatically.  The boys got a calmer mom.  And for the first time since August 23, 2012 I actually felt like I had some control over things.  I know that control is an illusion.  We think we have control over things, but all we can do is make a plan and hope that everyone else cooperates.

It was the first time that I felt like God had given me a chance to hold the reins.  Funny thing was that I didn’t want the reins any longer.  I hadn’t held them in so long that holding onto them just didn’t seem to be that important any longer.  I had found that elusive “new normal” that so many survivors talk about.  Cancer doesn’t define me any longer.  I am so much more than an ovarian cancer survivor.  I used to wear my survivor badge first and foremost.  Now I’ve moved it further down my sash.  My faith in God badge is first, the my wife and mom badges come next.  I wear the survivor badge right next to my homeschooler badge.  Maybe it’s because my hair has completely grown out (gray and all) and it’s now longer than its been in over 10 years.  Maybe it’s because I’m accepting those compression stockings as part of my wardrobe.  Maybe it’s because I’ve accepted neuropathy, a bit of bone pain when it rains, chemo brain and a hernia as part of life.  Maybe it’s because I now prefer to have blood drawn from my port in my chest rather than my arm veins (which are awful from the chemo).

Honestly, I know that it’s because of all the people who’ve prayed for me.  I know it’s because I have friends who have my back and refuse to let me wallow for too long.  It’s because I’ve been blessed with a sports fanatic and a cuddle bug for sons who say they prefer me the way I am right now because I’m here.  I think it’s mostly because I’ve prayed, begged and pleaded for God to tell me what I’m supposed to get from this experience.  What’s to come out of it.  Did I go through this for nothing?

No, I didn’t.  I think the lesson I learned was that what we think is so important, what must be controlled, what we feel has to be done RIGHT NOW, is usually because of our own self-imposed restrictions.  Sure, there are always things that need to be done and some are time critical.  But for the most part, you just lay out a plan for the day and try to accomplish what you can.  If I can scratch two things off my to-do list every day, I’m doing pretty good and I try not to sweat the rest.  I still work under deadlines for clients, but most of them are good about extending time to get a quality piece.  And for those that don’t want to extend a deadline, they are just missing out on one fine article.

The lesson I’m taking away, for today anyway, is that I needed a peaceful, easy feeling and that’s all I really need.

 

 

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.

 

 

Moving On?

ImageOn Saturday, I did the Power is Teal walk.  It was a 5K to raise money for ovarian cancer research.  I walked every single step of that entire path with one of my bestest buds, Denise, who came all the way from Maryland to walk it with me.  My family wasn’t with me, but Denise was.  And so was the lovely lady in this photo.  This is Sharon and she was my lifeline at the OPCC while I was in chemo.  While I didn’t have her for every infusion, she was there for the majority of them.  Most importantly, she was there for the first and the last.  I went in with her and I came out with her.  I refer to her as my “angel in blue” since she wears navy scrubs at work.  She is the sweetest, gentlest, kindest, most loving kick-butt nurse I’ve ever met.  I know God hand picked her to oversee my care.  I never worry when Sharon’s around.

After the walk, the three of us were talking.  Sharon asked me what was next.  I’d beaten ovarian cancer into remission.  I’d met my first goal of walking a 5K (and my feet are still numb from the experience).  I had the opportunity to meet those that have walked the path before me and are thriving 2, 3, 5, 10, 15 years later.  I won 4 UC football tickets with paid parking.  All in all, a great day.

Now, I reflect on what’s next. I’ve said in the past that remission is far harder than cancer, at least psychologically.  When you are in treatment, you know where the enemy is and you are working to throw everything at it to send it packing.  Once it leaves, you always wonder if it will rear its ugly head again.  Every three months, I get the labs.  Every 6 months I get the scans.  Every 3 months, I see my oncologist on pins and needles.  Did the tumor marker stay the same?  Did my scan show something ugly?  Am I okay?  Statistically, the answers should always point to yes.  My oncologist is a perfectionist and rightly so.  He spent 5-1/2 hours cleaning every last cancer cell from my body.  He looked me in the eye and told me on more than one occasion that he was positive he’d “gotten it all.”  I follow his diet and try to exercise.  I attempt to get the sleep I need.  I am working toward finding some type of inner equilibrium to keep my life balanced.  I try to find joy in all things.  But that little voice hangs in the background taunting me,  keeping me from fully engaging in my life.

I have finally gotten to the point where I don’t see myself as an active patient in the mirror.  I finally have enough hair that it looks like I keep it short.  The only reminder is that I keep it my natural color.  I’m too scared to color it.  Hair color can cause cancer on some microscopic scale so I avoid it even though I hate the fact that it makes me look like I’ll be 60 next year instead of 50.  I’m just not ready to take that miniscule risk.  I do like the curls.  Wash and go is great.

What will it take for me to move on?  Another monumental life event?  I certainly hope not.  I had enough of those last year to last a lifetime.  No, I think it will be those gentle nudges I receive.  Like the thrill of completing a 5K, it will be the small goals I set and complete.  I am working hard to lose the weight I had before my surgery.  I am back down to my pre-surgery weight.  Yes, you read that right.  Despite having 10+ pounds of tumors and fibroids removed, I gained weight (thank you steroids).  And I learned that the theory that you’ll lose weight during chemo is pretty much that – a theory.  Most people have to take so many steroids that even if they don’t eat they still maintain or even gain weight.  Add that to the instant menopause and chemo (thank you twice Dr. Pavelka), it’s practically impossible to lose weight.  Yet, I’ve had 2 pounds budge off this month.  Boy, this is gonna’ take a while.  But I digress.

The gentle nudges.  For those of you who’ve been gently nudging me to turn the blog into a book, I have heard you.  I am working toward creating a devotional book.  My hope is that by processing through the past year I can move on with my life and get into what’s waiting behind Curtain Number 2.  I have a lot I want to accomplish, but fear has held me back from some things.  But God hasn’t given me a spirit of fear and while being scared can be a healthy thing, it isn’t doing me any good right now.

So I’m slowly packing up the past year and checking Map Quest for my next destination.  I still plan to learn life’s many lessons, but I hope they are a lot more fun!