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.

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.

Educating the World

The past few weeks I have felt like a hamster on a wheel; running but getting nowhere fast.  I’m in the midst of my quarterly doctor and lab visits (2 more to go!), Vacation Bible School (VBS), a major writing project, a sick cat and prepping Braeden for endoscopy next week, all while trying to maintain some semblance of a home and the schedule that goes with being a family.  For those who think being a stay-at-home mom or working from home is easy, I dare you to try it for a week.  I can almost guarantee you’ll be running for the front door within a month, particularly if you really like that extra paycheck.

My choices in life (whether I’ve made them voluntarily or circumstances have dictated them) have generally involved me having to, at some point, educate the world.  When my husband and I chose to adopt internationally, we found ourselves educating people on the nuances of international adoption.  For those who aren’t familiar with our choice, here’s a brief history.  After 5+ years of unsuccessful infertility treatments, we chose to adopt.  The best choice for us was international adoption.  It wasn’t that we were opposed to adopting from the US.  It was simply because that God had decided that these two boys – one in Russia and one in Guatemala – needed us as parents, and we needed them to be our sons.  We traveled and had two of the most incredible experiences of our lives and continue to be blessed to watch our sons grow from infants into young men.  Even before the boys came home, we found ourselves educating our families and friends on international adoption, even as we were being educated ourselves.  Once they came home, the education continued.

While we are still asked about adoption, it’s less frequent, especially in the case of our oldest son who was born in Russia.  He looks like the all-American kid, especially when he wears his ever-present Reds baseball cap.  Our younger son is a different story.  Being from Guatemala, he does not “blend in” with the family.  Our immediate circle of family and friends don’t notice his gorgeous brown skin (I am insanely jealous of it) any longer, but others do.  Being Hispanic he will have to face prejudice.  We’d dealt with it once before, while he was in kindergarten at our homeschool co-op, but the parents of the other child were on board with educating their child.  The boys ended up being friends.

This week, I found myself in the position of “educating the world” again.  My normally happy-go-lucky son was the target of prejudice and bullying at VBS.  He stood up for himself and did all right things (told the kid to stop, talked to his crew leader), but it didn’t help.  After night #2, he talked it over with us.  After I calmed down, I requested a crew change and got it immediately.  However, I found myself in the situation of educating the world, when I had to reiterate the whole adoption and “not looking like me” idea.  Seriously, it’s 2014.  This is NOT a new concept.  Yet I did it, not for them, but for my son.  That’s what a momma does.  She advocates for her child in an effort to show them they aren’t strange or weird or anything else.  They are who they are and if people don’t like them, that’s their problem.

Once I cross that bridge, I get to educate the world about homeschooling.  Fortunately, I am not alone in this boat.  I have lots of friends who find themselves having similar conversations.  Actually, I tend to forget there’s a whole other world out there that goes to public or private school.  The boys often have to remind me of this when I ask why there are so many buses on the road.  Yet, I do end up explaining that this is what’s best for our family and, quite honestly, one of the things that kept me sane during chemo.  I had to get up and “do school” with the boys.  It was a reason to get out of bed and stay up.  It was one of the few times I was “normal” during those long months.  My kids have thrived in homeschool and I have discovered that Kyle does much better teaching himself and Braeden has a real talent for science so I can use these to my advantage when teaching them.  I’m not sure they’d be afforded the same opportunities elsewhere.

Of course, my biggest educating moments come with cancer.  Now that I look “normal” again (meaning my hair has grown out to shoulder length and I have color in my face), when I mention that I’m a cancer survivor people assume it was breast.  Then I explain it was ovarian.  Then I either get the look of “Why aren’t you dead?” or “When will you die?” as if ovarian cancer is a death sentence.  And for some women, it is.  If you’ve read this blog for any length of time, you know that I was extremely fortunate in that my cancer was found at stage 1.  I underwent 7 grueling rounds of chemotherapy that has given me side effects I wouldn’t wish on anyone.  I am faced with the lifetime of oncology visits, scans and blood work.  I found out last week that the infusion port that was used for my chemo is a permanent part of my anatomy until it needs to be replaced.  My veins are shot.  They were never very good, but the chemo took what little bit was good and ruined them.  Now I get to educate people on my port, why I have it, why I keep it, and all that jazz.  I have never rebounded energy wise.  Yes, I am on the cusp of 50, but it’s the new 30, right?

As I’ve said, ovarian cancer suvivorship is a tight knit club.  Most survivors face at least one more battle, whether it’s 2 years, 12 years or 20 years later.  You walk a tightrope of living life and glancing over your shoulder for the beast.  The scars don’t go away for any cancer survivor.  Unfortunately, most of my scars aren’t visible (I seriously doubt anyone would want to see my surgical scar given my current physical condition, which is a nice way of saying I don’t have a bikini body).  Let’s face it, no one wants to hear you complain after you’ve completed chemo.  You’re supposed to be “cured.”  You look good, why don’t you feel good?  I want to shake people and say “Because I had ovarian cancer you idiot!”  Instead I smile and try to explain that the very drugs that kill tumor cells have side effects which can last years.  I tell stories about chemo fog enhanced with menopausal forgetfulness.  If I’m really irritated, I launch into a highly scientific explanation of bone loss and nerve damage due to the heavy metals in carboplatin and the cell turnover in taxol. I tend to save that for only the truly irritating “experts” who read a lot, but have never had cancer.  It’s fun to watch them squirm.

I used to plan for everything, now not so much.  I look maybe a couple of months out, but that’s it.  My husband did get me to think about how we wanted to spend our 25th wedding anniversary in 5 years (we just made it to 20, but don’t ask me how).  We decided Hawaii might be nice.  I do have a plan.  I plan to have a bikini body and I know my scar will be on prominent display (hopefully it will just be the one).  This will be one time I won’t mind educating the world.  I figure being 54 and having a killer body is worth the hassle of having to educate the world.

Honestly, we’re all educators.  We’re all called to educate in our own special way; by our words, our actions and our choices.  Some of use just educate a bit more than others.

 

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.

The Aftermath

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

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

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

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

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

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

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

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

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

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

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

 

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.