What I Learned from Cancer

I know, it’s been a while. And dear reader, I know you’ve been longing for my nuggets of wisdom (or lack thereof). It’s not for lack of trying. It’s just that sometimes life gets in the way of my best intentions. I have been getting ready for school (both here at home and for Learning Tree (#best homeschool co-op EVER), vacationing with one of my dearest friends, and trying to generate some income writing.

However, with a new school year comes looking forward to learning new things. The Ultimate Bengal Fan is doing an in-depth study of American History and I love hearing what he’s learned. B-man is telling me all about Ohio History. All this learning at the homestead has me thinking about what I’ve learned and what I continue to learn on this journey called life.

A couple of days ago my Facebook account showed me my memories from past years. My post on August 23, 2012 went something like, “Visit to the GYN ended with finding out I have a cyst on my left ovary. Ultrasound next week. Nothing like 5 years of fertility drugs to give you side effects.” My post was my usual “Who me, worry?” I remember that day like it was yesterday. I sobbed for hours on end. I KNEW I had ovarian cancer. Don’t know how, but I did. My entry into the world of cancer was swift and painful. I’m still looking for a way out that doesn’t involve ceasing to be an active participant in this world.

I do realize, however, that cancer is a great teacher. Yes, that is a positive and seeing as there are so few, it does bear mentioning. I have learned a great many things; some about myself and some about others. All of them have shaped how I look at the world.

1. Cancer is a jealous lover. Remember the movie Fatal Attraction? Glenn Close played a creepy jilted lover. Cancer is a lot like that. It does not go way quietly. Trust me, there’s nothing quiet about chemo. From the beeping of the IV’s to the quiet moans of pain to railing at God and the universe, there’s no peace. And just when you think you’ve got a chance at staying in remission, it rears it’s ugly head like Jack Nicholson in The Shining and says, “I’m back!” No, mine’s not back, but I hold no illusions that I’ll be able to avoid this intruder for the rest of my life. When cancer wants to return, it will. And if it doesn’t, hooray for Dr. Downer.

2. Family is a relative term. Family is more than who you’re related too. My family of origin is relatively small. When I was diagnosed, my mom and cousin Ginny were really the only two people I spoke with. My husband’s immediate family is a bit larger. My mother-in-law made the 3-1/2 hour drive several times to help me after a chemo treatment and took me for fluids. However, there were other people who surrounded me and became as important as those who society would call my “family.” Momma Renie took me to an ultrasound, stayed with me when I got fluids and loved on my kids (and Mr. Dan helped out too), as well as dried a lot of tears. Sister Sue was there as was my niece Sarah to help out with transportation and child care, loving me as only a sister can. Second mom Kelley stepped up and loved on my children as only a mom can while I was at chemo. Coach Cathy quickly became my trusted confidant when I just couldn’t take one more infusion. While my BFF Denise only visited once, she made it count. She came a few weeks before Christmas and helped me bake cookies and put up the tree when she should have been doing that for her own family. My sister in teal, Lisa, whom I’ve never met except on Facebook, called several times with orders “Do NOT quit!” You don’t say no to Lisa. These people surrounded me and my family and loved us in a way that I still find incredible. God puts who we need in our life and they aren’t always a relative.

3. Laughter really is the best medicine. I love good humor (and the ice cream’s not bad either). In my opinion, my dad had the greatest sense of humor. Even now, I’ll say something and my DH says, “That’s a Budism.” There were a lot of days when I’d think of something my dad would day and would laugh (imagine a 6 year old singing “Walking in My Winter Underwear” to the tune of “Winter Wonderland” and you’ll get the idea). My B-man is a natural comedian and it was healing to my soul. I learned that when life is crappy, find humor. Life probably won’t be any less crappy, but if you can make fun of it, it’s easier to get through.

4. You are always stronger than you think. I can’t tell you how many people tell me that I showed amazing courage during my illness. Honestly, it didn’t occur to me not to be any other way. I had two young sons who needed a mom and a husband who, despite being an incredibly gifted engineer, has a tough time keeping things rolling at home. They needed me. So I just kept putting one foot in front of the other. Eventually, you find a rhythm even if it’s just walking from the bed to the couch, while stopping to get a cup of coffee. It’s like Nike Just Do It! I think God will let me know when it’s time to stop. Until then, you fight like hell.

5. Life is full of choices, not all of which you can control. We all make choices every day. What to wear. What to eat for dinner. What time to go to bed. Those are easy. The hard ones aren’t as easy. The toughest choice I had to make was when Dr. Downer told me that he recommended two additional chemo treatments beyond the 6 initially prescribed. My DH and Mom were supportive, but Coach Cathy cried with me. I was all ready so beaten down. I chose to do number 7, but drew the line at number 8 when my body was so broken that another treatment would have landed me in the hospital. Dr. Downer ultimately decided number 8 was not an option given my body’s physical state, but I’m not sure what my decision would have been if it had been presented to me. Fortunately, I didn’t have to make that choice, but lots of other teal sisters do every day. The choice of living while being poisoned or dying from the Beast doesn’t really seem like much of a choice.

6. God is always in the storm. I never felt closer to God than when I was battling cancer. Being in the pit, you decide to shun God and “punish” Him or hang on for dear life. There’s a song I love which goes something like this “Sometimes He calms the storm with the words ‘Peace, Be Still.’ He can, but it doesn’t mean He will. Sometimes He holds us close and lets the wind and waves go wild. Sometimes He calms the storm and other times He calms His child.” He calmed this child in ways I never thought possible. Yes I was nervous, but never afraid. God had this and I was just along for the ride. I vividly remember placing everything in His hands and walking away before my surgery. Unfortunately a few weeks after chemo ended, I snatched it all back. I need to remember that control is an illusion. How I chose to respond is what matters. That applies to everything, not just the Beast.

So I have, like my quote, begun to grasp that the unexpected happens. Courage, grace and humor go a long way to making life more tolerable. Those same attributes will help me as I continue on this journey and as I move onto my next. I am meeting with a dietician this week to get a definite weight loss plan in place. The weight has got to go. I got rid of cancer so now it’s time to get rid of the flab (vacation pictures can make you realize what you really look like). The Beast wants me to keep the fat. You know I hate listening to the Beast so the flab has got to go.

Here’s to lessons learned. May we never stop learning.

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Not Really Me

Last night, my Ultimate Bengal Fan introduced me to a great move; 1000 to 1: The Cory Weissman Story. Based on a true story, Cory is known as Mr. 1000 since he scored 1000 points in his high school basketball career, then received a scholarship to Gettysburg College. While prepping for his freshman season, he suffered a massive stroke that nearly killed him. It took him 2+ years of rehab to be able to suit up for a game. In the final game of his senior year, he scored a single point. His team was up by 20+ points with less than a minute to play. His coach allowed him onto the court (he was still suffering seizures so this was a liability for the school). The other team fouled him, so he could make 2 foul shots. He made the last one. It was a great story about determination, heart and the desire to live life. The Bengal Fan even said the liked it better than most sports movies because it didn’t have a miraculous comeback. It just showed him becoming “normal” again.

During one point in the movie, Cory is speaking with a psychotherapist. He breaks down screaming that he just wants his life back. The one before the stroke. That one scene continues to resonate with me today and I think it will for the days and weeks to come. I completely understand what Cory’s saying. I understand that primal need to get back what you had before.

People who have faced or continue to face a life threatening or chronic disease know that there’s two phases to your life; the one before the disease and the one after. Try as you might, even with medical advances and technologies, your life is never the same. You can do all the same things, be with the same people and wear the same clothes, but you’re never, EVER the same.

My sons continually point out to me that I’ve changed since cancer, but I’m never sure if that’s a good thing or a bad thing. As I’ve said before, they love to mess with my ever present chemo brain. They also talk about my penguin strut, although with PT that’s pretty much gone unless my feet are really numb. The gray hair jokes are starting to lose their appeal and I’m pretty sure the B-man is getting tired of telling the kids on the street, “No that’s NOT my grandma! My mom just looks old because she had cancer. Duh!” He then proceeds to explain that when you lose your hair to chemo, it comes back soft and gray. Nothing like a trash talking 9 year old explaining the pros and cons of chemo hair. I believe I can count these conversations as a health credit for homeschooling purposes.

I talk with my husband about this quite a bit. I miss what we had before cancer. Not that our life was one of romance and roses. It wasn’t. It was an average life, doing average things. But sometimes I can’t manage average.

We love to go to Home Depot. It’s a date for us. We walk around the store and talk about all the things we’d love to do in the house. I look at countertops and cabinets. He looks at Pergo and light fixtures and we dream about what our house could look like if we’d just win that $5,000 gift card for filling out the survey (somebody has to win, right?). We even have a list of future projects.

Then I’ll look at the budget. Now I did this before cancer, but not quite as closely. BC (Before Cancer), I just checked to be sure the money was there. In my PC (Post Cancer) life, I not only check to be sure the money is there, but I’m also checking the reserves in case we spend the money and the Beast decides to roar back into our lives. While I hate my carpet, I hate cancer more. We spend a lot of time wishing rather than doing, and that makes me sad.

Our financial advisor recommended that I get more life insurance. While cancer patients have a tough time getting insured, ovarian cancer patients just can’t get insured. My AAA membership allows me to apply for insurance “that approves nearly everyone.” Guess who didn’t get approved? I actually called the number on the letter that said I was declined. They politely said, “We don’t insure people who’ve had ovarian cancer.”

“Why?” I asked.

“Because you run a greater risk of dying.”

“Doesn’t everyone run a risk of dying?”

“Not like you.”

“Do you know something I don’t?”

“I’m sure you’re familiar with the survival rates. They just aren’t very good.”

“Yet here I am. How about a letter from my oncologist?”

“No. You’re not worth the risk.” OUCH! Now that’s customer service!

What I really wanted to say is “Let’s face it, life is fatal,” but that fact was lost on the Customer Service Representative I spoke with.

Fortunately, John’s employer offers spousal life insurance. Unfortunately, I could only get a fraction of what I need on a guaranteed issue basis. I was finally able to get Critical Illness Coverage as well. It will cover our deductible if and when the Beast returns. I hate feeling that I’m a drain on our financial future. We have to look at everything in the context of “what if.” We never did that BC. Being PC stinks.

There are parts of me that continually seek out my old life, while some parts embrace the new. Writing has become important to me once again and my faith is stronger than it’s ever been. I just hate not being able to do what I did before. I recently tried to do a 2 mile walk. After a mile I was about ready to fall over. I did finish it, but it was a sloppy finish. It’s a lot like how I clean my house. I start off strong, but in the end I just end up with a neater mess than I started with.

Coming to terms with myself PC is not easy. While I laugh at my PC quirks on the outside, there is a piece of the old me railing on the inside. That “new normal” everyone talks about stinks. But it beats the alternative.

Normally, I think being PC is overrated, but it has it’s benefits.

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?

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.

If I Knew Then…

This week, my husband and I celebrate 11 years with our Ultimate Bengal Fan. It doesn’t seem like he’s been with us that long. I now have a much clearer understanding of the saying, “The days are long, but the years are short.” Those early days of mommyhood were so long and I spent much of my time wishing they would pass.

The seemingly endless days of early childhood were tough. Unlike the traditional route, where you have several months to prepare for your child, I had 3 weeks. While my husband and I had spent months jumping through hoops at the state and federal level in the US as well as the Russian government, it was all just paperwork. We had a crib and a few other things, but that was it. When you adopt, you don’t have a due date. It’s pretty much a hurry up and wait kind of thing, at least it was with us. One day you’re living your life and the next you’re scrambling to finish paperwork, buy airline tickets, gathering baby things and generally running like a chicken with your head cut off to take off for a foreign country where you can’t even read the alphabet.

I did learn that I love the people of my Fan’s home region in Siberia. It’s beautiful and the people are hard working and friendly. Our return to Moscow was a bit like being in New York City, only you couldn’t read the signs. It’s busy and crowded. I don’t like crowds. And it is a bit disconcerting to go to the grocery and be greeted by guards carrying weapons. Kroger doesn’t look so bad any longer. I learned that while I may not like a lot of things in the US, it’s still better than many other places and I literally knelt down and put my head to the floor after we landed in Boston (despite being tired, I drew the line at actually kissing the ground. I still had a bit of sense after being up for 26 hours straight). I was not only thankful for my home, but that there were changing tables in the bathrooms. It’s the little things, trust me.

It was that trip, and the subsequent one to Guatemala to bring home the B-man, that shaped me for my future challenges. Both my sons faced challenges stemming from being orphaned as infants, albeit different since one was in an orphanage and another in foster care. I learned I’m much more resilient than I give myself credit for. I learned to think on the fly and that life cannot be put into a nice box, allowing you to pick and choose what will happen. It just goes and you have the choice to go follow the current or try to swim upstream. There are times to be the water and times to be the spawning salmon. You just have to know which is which.

Cancer is like that. You have to know when to fight and when to let it go. I’m not talking about the “calling in the hospice” letting it go. I’m talking about taking a nap, letting the chemo do it’s thing and having a pity party kind of letting it go. It was a tough act two years ago and is still a tough act. I’m still fighting the incredibly taxing side effects of chemotherapy. I still fight neuropathy, bone pain, nausea, headaches and stomach issues. Anemia, which I had filed away as a past issue, has raised its ugly head again. The rain today is making me feel achy and just plain yucky. I am bummed because this is the first Saturday in I don’t know how long that I actually had time to attend a volunteer meeting for the Ovarian Cancer Alliance in my hometown. Instead, I’m sitting here hoping that my hands last longer than the words in my head.

I thank God every day for the gift of motherhood. He knew exactly which children we should have and when we needed them. It wasn’t on our timetable, but His. He knew that I would get cancer, but made sure my precious sons were old enough to understand and help me out, but that I would be around to make sure they would continue on their path to be well-rounded, faith grounded and loved beyond measure young men. My prayer has always been to see them start off in their chosen fields (choosing to see them graduate from high school seems cliché. I want to see them soar). He placed us in a homeschool environment so my boys would be able to be hugged, cared for and blessed by people who were friends.

Every day puts the odds into play. Every day is a gift. Good days are filed away and bad days bring home the fact that the battle continues. Cancer is a lot like a foreign country. If you stay long enough, you learn the language, adapt to the weather and find joy in the culture. If I knew then that I would face ovarian cancer, I might have paused about bringing my children home. But then I wouldn’t know what I know now.

The days are long, but the years are short. It’s what you put into them that counts.

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.