When Life Doesn’t Cooperate

The news isn’t good.  My cancer continues to grow (it’s nice to know I can grow something).  I had my CT scan yesterday and got the news from Lovely Liz around 2:20 pm (funny how you remember those things).  Strangely, she was a bit upbeat, like it’s time to get moving now.  We’ve played around long enough.

Now I was sure that my cancer had shrunk.  I would have bet money on it.  I think Pete Rose would have taken that bet.  But life didn’t cooperate.  I don’t feel bad, except for the persistent nausea from the cisplatin.  I’m not even that tired.  It’s strange, but a good strange.  I know God is in control, no matter what comes next.

It’s not that I didn’t cry, I did.  But not because I’m sad, because I’m really not.  Pissed off is more like it.  Pissed that I feel like I’ve wasted 12 weeks of treatment.  Pissed that my kids have to continue to go through this.  Pissed that I’ve got at least 24 more weeks of treatment and that will seriously cut into my planned vacation time.  Pissed that my dad is not personally here to share this experience.  I think my anger is being properly directed rather than being flung at the wall like taking a handful of darts and flinging them, hoping for the best.

Dr. Determined (I like this better than Dr. Downer) immediately went into full fight mode.  Lovely Liz told me he skipped over the next couple of drugs in line.  I imagine these drugs standing in line like tin soldiers waiting for their chance to be called up and Dr. D decides to call in the Navy Seals instead.  And I’ve got to say, I LOVE the name of this new drug.  It makes me smile every time I say it – Topotecan (pronounced toe-poe-tee-can).  Isn’t that just be best name for a killer drug.  Sounds so innocent.

Topotecan is from the Asian Happy Tree and is part of the Hyacinth family.  It has a single minded mission – to destroy the DNA of cancer cells as they replicate.  I imagine the double helix model with its red, blue, yellow and green ends twisting hoping to create more, when this little tiki guy comes in with his mask and rattle (think crazy witch doctor from Scooby-Doo and you’ve got my mental image) untwists the helix and starts pulling the ends of the DNA.  The helix collapses.  The witch doctor does another crazy dance and moves on to the next one.  You can’t help but laugh or smile with this drug.

There are some positives.  While my bone marrow will continue to take a hit and fatigue will be a greater monster, nausea may become a thing of the past.  I am so nauseated today that this sounds like the best trade ever.  It’s also done in 4 week cycles.  I get an infusion every Wednesday for 3 weeks, then I get a week off.  The infusion lasts about 2 hours, so I’ll only be at the hospital for 3 hours or so.  As I’ve asked so many, “What will I do with my Wednesday afternoons?”  Seriously, I’ve always had all day infusions.  This is great! To celebrate, I’m getting a new haircut tomorrow.  Well, actually I’m getting the haircut because my hair has lost its curl and is flat and thin, but it sounds better to say I’m celebrating.

God has promised me healing.  I heard Him say it and He NEVER talks to me audibly so this is a promise I cling to.  My husband and I ask only for shrinking tumors and that they become stable.  We can live with stable.  We can live with smaller.  Maybe this is why I’m just not all that worried.  As I explained to my Ultimate Bengal Fan, Dr. Determined’s job is to find the right drug, mine is to fight and not give up and God’s is to do the rest.  Since God has the biggest job, who am I to stand in His way?

Please don’t feel sorry for us.  We don’t.  Pity doesn’t make anyone feel better.  If anything, we are more determined than ever to fight as a family.  The boys are looking forward to a more nausea free mom and Hubby hopes his cooking days are quickly coming to an end.  I am looking forward to Wednesday afternoons.  And God has all this in His Hands.  Life may not be great, but it’s good.  I feel good.  Other than the nausea, better than I have in weeks.

Bring on the Topotecan and smile.  God has work to do.

Dealing with the Unexpected

Cancer is all about dealing with the unexpected. Let’s face it. No one expects to get cancer, yet it happens. And if you’re in the wrong end of the line, you’ll deal with it multiple times. I could write volumes on why cancer is an awful Beast that God needs to eradicate with a sweep of His mighty sword, but that’s been done. Sometimes it’s the unexpected that arises during cancer that makes you step back and think about why God is asking me to walk this particular path (and trust me, I ask A LOT). I try not to whine the whole “poor me” scenario since Coach Cathy has a strict limit on the number of pity parties I’m allowed to have, so I try to find those little nuggets of gold among the silt of the river. Sometimes you really have to look. Other times they come right up and smack you along side the head.

Christmas always brings unexpected blessings. This year, we were all nearly asleep around 10:15 when our doorbell rang. Hubby went to the door and found a large gift bag with a huge jar in it. The jar was a Christmas Jar and filled with money. Coins and paper up to the top. We were floored. An anonymous note accompanied the jar along with the book Christmas Jars. I’ve started the book and cried through the first 4 chapters. I also find myself crying at the thought of so many people wanting to bless my family this season. I can’t imagine who pulled this together and why everyone who donated felt led to give to us. I wonder if Mary felt a bit like this that first Christmas. Imagine all these strangers coming up to a cave bringing gifts for your baby. You know who your baby is, but still, he is a baby. I’m not sure she looked as serene as the nativity scenes and paintings make her out to be. After all, she had just given birth! She and Joseph had to be blown away by the sheer volume of blessings their baby boy was receiving.

We went to church Christmas Eve. I decided to go, despite feeling nauseated. I love the candlelight service and singing “Silent Night”. While that was moving enough, I was blown away by the sheer number of people who approached me and asked how I was and that they were praying for me. Some I know, most I didn’t. By the time I got to Pastor Brian, I was crying. As I hugged him, I was trying desperately not to use the shoulder of his shirt as a tissue. I didn’t want him to make a bad impression on those who only come to church on Christmas. When another person brought a plate of cookies just for my sons because she thought I wouldn’t feel up to making cookies for them, that was my breaking point. I cried through the whole service. It’s probably a good thing Momma Renie and Papa Dan weren’t there. I would have found Dan and cried like a baby since he reminds me of my own dad. Since he’s the head usher, that would have made collecting the offering a bit interesting with him walking down an aisle and me clinging to him like some sort of weird snake.

On Christmas, I opened my gifts from Sista Sue. She gave me an Angel of Hope. I think this is for both of us. She is reminding me to always have hope, while she remains hopeful that this cancer will be eradicated from my body. The Dammit Doll is much more practical. When you get mad or stressed, you’re supposed to slam it against the wall saying, “Dammit, Dammit, Dammit.” It’s going to chemo with me. I can’t think of any place more appropriate. I may even share it with a couple of the other regulars I know. Chemo patients are a strange lot, but we always stick together.

Last night, I reflected on my blessings. Yes, I have an incredible family, an amazing posse and friends who support all of us. But it’s more than that. I think God brought these particular blessings to me at this particular time to show me that while chemo sucks, it can be conquered. I have a choice to make this week, continue with my present course of treatment for one more cycle or switch to a new drug. Hubby and I believe that doing one more cycle of this cocktail will finally show significant results. My body is slow to respond to most drugs and the trauma of the DVT’s and liver biopsy, along with stress, make it more difficult. We’ve prayed about it and God hasn’t said not to, so we feel we should give these meds one more shot. A CT is tentatively scheduled for the end of January.

These are never easy decisions. My platelets and hemoglobin are at an all time low meaning I’m tired and cold all the time. El Nino is giving us a very mild winter, but, unlike our neighbors, we use heat because I’m always cold. My kids run around in shorts and T-shirts and I’m wrapped up in fleece blankets. But platelets can be transfused and eventually, I do get warm. Staying the course is the mantra of the day and I try to stick with it.

Embrace the unexpected and celebrate your blessings. Life has no guarantees, that’s why today is called the present. May 2016 bring you health, happiness, peace and a cure for cancer.

Climbing out of the Pit

Hitting bottom is not fun. It hurts – badly. I don’t recommend body slamming unless you have the body of a superhero. When you hit bottom, you generally don’t flutter down softly like a feather, you hit it full force and there’s nothing to break the fall. If you’re like me, you land face down and get a mouthful of mud on top of the indignity of laying spread eagle at the bottom of a huge hole. It’s the end of a long line of bad things.

Sometimes, it’s easy to get out of the pit. The ground is spongy and you can get a decent jump to catapult yourself to a limb or other hold to pull yourself you. Or, if you’re like me, you just lie there. After all, there’s no place left to go. You’re all ready as low as you can go. Why tempt fate? Better to wallow in the pit with the worms and slime then to run the risk of sliding back despite your best attempts not to. And why not stay in the pit. Blood clots, liver biopsies, brain MRI’s, failed chemotherapy, all pushed me down further and further into a dark place that I felt like no one could reach. Not my children, my mom, my husband or even God. NO ONE. And I preferred it that way. At least, I wasn’t going to have any more issues.

I will admit, wallowing in the pit, while it can be strangely comforting, isn’t a good place to stay. Well, unless you like worms, slime and other creepy crawlies. Personally, I find them a bit, well, creepy. And while mud is supposed to be good for the complexion, I’ve never read any studies on the dental benefits of mud. So what’s a girl who’s been through the wringer to do?

Well, this girl didn’t do anything – at least at first. I stayed in that pit. It was safe, relatively speaking. Yes, it was slimy, and dank and definitely gloomy. But I knew I wasn’t going anywhere else. I was at rock bottom. Rock bottom isn’t a bad place to be. Hard, yes, but not necessarily bad.

I’d like to say I had an epiphany that got me moving out of the pit, but that would be a lie. It was more like my vivid imagination working overtime. I could see myself in the pit with these creatures dancing around the top of it. Think the Habersham Brothers from Horton Hears a Who. They were the evil monkeys who were going to roast Horton is Beezelnut oil (which I’m sure is loaded with trans fats). They reminded me of evil minions out to do Satan’s bidding. Unfortunately, I just can’t imagine Kevin, Stuart or Dave (the minions from Despicable Me being that evil, despite being actual minions.

So as the Habersham Brothers are doing their dance around the pit, who should appear but the Archangel Michael in all his glory. I will vouch for the fact that he is glorious. I can’t begin to imagine what the glory around the throne of the Almighty must be like. When Michael comes with this blazing sword and his angel army, you don’t lie in the pit and tell him you’re too tired, scared, or overwhelmed to move, you move. And if you don’t, he moves you. I was swept up on the wings of angels to the edge of the pit, with the Habersham Brothers standing their with their mouths open catching the flies coming up from the pit. Michael made it abundantly clear that I was now “off limits as a child of the Most High.” Suddenly, everyone was gone and I was alone, standing in the grass, and at peace.

If you’ve been reading my blog for long, you know that God has to hit me with a 2×4 to get my attention. An archangel with blazing swords qualifies. However, I never felt chastised by God for not being strong enough, or brave enough or faithful enough. Jesus sympathized with my plight. He reminded me that he was alone in the Garden, sweating blood, praying that he could avoid death. Then he was beaten, scorned and forced to carry his cross, only to be nailed to it as a common criminal. He was alone. Yes, his mom was there as was John, the beloved. They were there, but were unable to hold his hand or offer any comfort. In his last hours, even God left. My savior was ALONE, tired, scared and dying. He was separated from the Father, whom he’d been with forever. I cannot begin to fathom the depth of Jesus’ pit. I can’t even imagine being that alone.
Talk about dark, scary places.

This is why I am out of my pit. Not because Michael flew in and saved me, although I am eternally grateful to God’s angel army. No, it’s because Christ said, “I know what it’s like to be alone; to be scared and not know what’s going to happen next. I know the worst. It’s being separated from God. I promise you will never be separated. I know it feels like it, but you won’t. I am always here, even when you don’t think I am. I’m ALWAYS here.”

This doesn’t make facing cancer a walk in the park or have me thinking that life is all sunshine, lollipops and rainbows. It isn’t. It’s full of nausea, fatigue and too many trips to the Cancer Institute to count. It’s still looking at my kids and hoping I’ll see them graduate. It’s still striving to be the best wife, mom and daughter I can be despite feeling like crap. It’s deciding to have a positive attitude even when you feel like crap. I’m still convinced it’s for times like these that Ativan was invented. It gets rid of the nausea and if you don’t fall asleep, you don’t care. I think God’s okay with that for brief periods.

I am better able to focus on what’s important for today. Actually, I live my life in two week increments, starting on Wednesday. I get chemo on Wednesday, take a bunch of steroids and nausea meds on Thursday, go for fluids on Friday (and more meds for nausea) to get through the weekend of spending time with my family and attending worship, go to co-op on Monday and then get more fluids and nausea meds, rest of Tuesday (and attempt to catch up on school since I’ve been at the hospital), then get labs and MORE fluids and meds on Wednesday. Then I spend the next 7 glorious days at home, trying to drink enough fluid and having fun with my kids. I let the little things slide. They just don’t bug me. They aren’t important. On Wednesday it starts all over again. Life is slowly getting a rhythm. Not the one we want, but it’s still a rhythm.

It’s good to be alive, cancer or no cancer. I’d take life without cancer, but that’s in the cards right now. What is in the cards? A life that’s speaks to others. May my life speak as a blessing.

Note: I tolerated the new chemotherapy well. Cisplatin works best with Gemzar as was considered the gold standard for treatment 5 years ago and still is, but has horrible side effects. I would appreciate prayers that I don’t react to the cisplatin. I have high hopes of remission with this cocktail – shaken not stirred of course.

Time for Plan B

Yesterday I went to get my second infusion of my new cocktail (shaken, not stirred). Labs were good, premeds good and Gemzar (the first part of my cocktail) good. Then came the fun, I started on my desensitizing doses of carboplatin. Carboplatin, while extremely toxic to ovarian cancer, is also toxic to the body. So they give it to you in small, incremental doses to avoid an allergic reaction. For some people this works, but for others not so much.

Unfortunately, I ended up in the “not so much” group yesterday. Despite all the precautions, I ended up with a severe allergic reaction yesterday. Now, I’ve had allergies my whole life, with asthma to boot if I get around too much mold, so an allergic reaction for me isn’t a huge deal. But when I start with an asthma attack, intense itching and a body that suddenly is the shade of a just picked vine ripened roma tomato, there’s a problem Houston. Fortunately, my Angel in Blue was right there and started pumping me full of Benadryl, Prednasolone and a whole host of other drugs to offset the reaction. The Lovely Liz even had to call Dr. Downer in surgery to be sure they’d thought of everything. In the end, I was finally able to go home. Exhausted from the Benadryl and Atarax, but racing from all the steroids. Life can be grand at times.

Just a side note, if you get too much Benadryl, your legs will twitch – BAD. It lasts about two hours and it’s not fun – at least for you. My hubby and the nurses enjoyed the show.

So today I’m in flux. It’s a bad place to be. The Lovely Liz called to check on me this morning and assured me that she will be working with Dr. Downer to get a Plan B in place. She’s hoping to be able to call my Angel in Blue next week to give her the plan so she can review it with me. I tend to take things better from my Angel than anyone else. Maybe because I trust her more than anyone else. She NEVER lets me down even when down is the only place I have to go.

I’m worried about the next drug. What will it do to me? Truth be told, I think I can handle anything except losing my hair. How vain is that? I like the way my hair looks now. I don’t like the way I look bald. One of the drugs on the agenda is called Doxil. While I would get to keep my hair, I would get other lovely side effects like mouth sores (we’re talking liquid diet here), rashes and peeling skin. Sounds lovely, huh. Wondering if this is a valid trade for killing ovarian cancer, my life for the cancer’s.

I’ve come to realize that cancer doesn’t kill people. It’s the chemo, or rather it’s side effects. Nerves are damaged, kidneys fail, hearts become less effective, asthma gets worse, blood becomes anemic. It sucks! While I really want to believe that the chemo will put this cancer back into remission and I will be happy dancing with NED again. However, what’s the collateral damage to my body and my family? I dream of watching my boys grow into strong young men and become parents themselves. I want to walk with my husband well into our 80’s. I used to take that for granted. Now I can’t.

So while I wait for Dr. Downer to create his new cocktail (again, shaken not stirred), I will spend time with my family. I will play with my kids as much as my body will allow (Gemzar makes you very tired), I will date my hubby, I will enjoy co-op, I will visit with friends, I will be creative, and I will try to find something that I find hilarious every single day. Mostly, I will do my very best to trust that God has me tight in His hands. Early today, I posted on Facebook that I felt like I was dangling from His fingertips, just barely able to hold on. I will trust that He has all ready put the Plan B in front of Dr. Downer. I will trust that what little Gemzar I’ve had is killing cancer cells, even if it’s just a few of them.

Plan B wasn’t on my radar. Now I have to rearrange my life to accommodate something I don’t know yet. Until then I will do what I have to do; put one foot in front of the other and just go with the flow. And while I’m at it, I’ll make the most of the moments. And maybe just start that book.

What’s Your Color?

I promised myself I wouldn’t go there this year, yet here I am. I told myself I have to immerse myself in my own battle and not try to fight any others. Yet, here I am. I know I’m too tired to really fight effectively, but I will try. Someone has to.

In case you haven’t noticed, it’s Breast Cancer Awareness Month. Despite the brilliant reds, oranges, yellows and tans of the leaves and the gorgeous sunsets, all I see is pink. Bubble gum, Pepto-Bismol pink. The Ultimate Bengal Fan commented the other day that orange and pink should not be worn together, and this is the kid who would wear stripes and plaids.

It seems that cancer has been boiled down to a color. What color is your cancer? Are you pink, blue, teal, yellow, purple, green, white or some combination thereof. Are you saving the ta-tas or some other body part? A fellow teal sister on a Facebook group I’m a part of commented on the tasteless “Go Braless” campaign to promote breast cancer awareness. She thought we should go commando to bring awareness to gynecologic cancers. Actually, guys could join in with this as well. Prostate and testicular cancer are below the belt as well.

I think the people who come up with these “campaigns” mean well, but they don’t think things through. When you’re fighting for your life, you aren’t thinking pink, teal, purple or any other color. You’re trying to figure out when you can take your next anti-nausea pill. You’re trying to decide how you can hide the overwhelming fatigue from your family so they don’t worry. Some days you wonder how you’re going to haul your butt out of bed to go to the bathroom, then you hear some perky AM news host talk about how they’re painting the town pink with bras. Hey, I would gladly go braless, but as a former boss of mine used to say “You’ll take your eye out ” (I’m rather well endowed).

I’m tired of hearing about moms who have breast cancer and take care of their families. Lots of people with cancer go through therapy and take care of their families and never receive one bit of recognition. I certainly don’t blog about my journey for the recognition. Truth is that the vast majority of cancer patients deal with their families and some have to work to keep their insurance or a roof over their head. Those are the real heroes. The ones that go through treatment and keep life going. They should get a gold crown. They deserve the recognition. Not that the mom with breast cancer doesn’t – she does. She’s doing the toughest job imaginable while fighting cancer. She just shouldn’t be singled out when there are so many others who do the exact same thing.

Cancer isn’t a color. It’s a wretched disease that destroys your body, mind and spirit and leaves families shattered. If you’re lucky, like I am, you have an incredible support system that holds you close when you can’t do it on your own. I have a God who is immensely powerful to save and holds me close. I have friends who will gladly stay with my children so I can get my infusions. Yesterday I discovered that I am in need of fluids on the weeks I don’t get chemo. This means a 90 minute infusion of saline, along with some extra steroid and anti-nausea meds. My quick 45 minute trip has turned into a “3 hour tour.” Fortunately, the 3 hours I spend affords me a few days of actually feeling good before I descend back into the depths of feeling lousy.

It just seems wrong to try to limit cancer to a color. It’s as if tying a deadly disease to a color makes it less threatening. How can something pink or blue or yellow take lives every day? I guess it’s like a tiger in the wild. They are majestic to look at, but I certainly don’t want to meet one up close.

Fortunately, we’re about halfway through the “pink month.” Then we can get on with life again. Until then, I will politely decline when asked if I want to give to a another “pink ribbon” charity. I will explain that pink doesn’t represent all women’s cancers. And I will laugh at the lack of color coordination on the part of the NFL. Pink shoes with football uniforms just doesn’t do it for me. And don’t even get me started on how much of what’s raised actually goes to patients. That’s for another rant on another day.

The color of cancer is reflected in the eyes of every patient, male or female. It’s reflected in the color of their skin since cancer is an equal opportunity destroyer of lives. Cancer is the plague of the 21st century. The only color I want associated with it is whatever color the cure is. Then, I will proudly wear the color of cancer. The color that caused it’s demise.

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.

The Spring of My Discontent

While I’ve never understood Shakespeare, he did have some awesome quotes.  Unfortunately, I just tend to paraphrase them to suit my own selfish needs which is probably why I got a “D” in Shakespeare in college (and why I changed majors, but that’s for another blog).  While spring typically brings a sense of new purpose and revival, I find myself wondering if I lost the memo telling me what I’m supposed to do next.

Last year I was blissfully awaiting those first tiny spikes of hair to sprout from my head like little blades of grass ready to burst forth from the sod left dormant by winter’s cold.  I was ready to actually go someplace and not have to be afraid of getting sick or needing my nausea meds. I felt like I was reawakening, just like the world after its winter sleep.

Well, I’m still waiting to wake up.  Apparently this is normal.  No wait, it’s the “new normal.  These are two words that should never, ever be put together to make a reasonable phrase.  Normal is normal so how can it be new?  I didn’t order a new normal.  I want my old normal.  My old normal, while maybe not the most exciting, was good.  I could walk for a reasonable period of time, keep up with my children and lose weight without too much trouble.  I remembered things, tackled new projects with gusto and was one ambitious woman.

Now, not so much.  Numb feet and hands, electric shocks jolting me, achy body, chemo brain, and a whole host of other things that are just too boring to list now bog me down.  I want to be able to walk more than 3/4 mile without needing to ice my feet and live on Motrin for 48 hours.  I want to play with my kids.  I want to not be afraid of tackling a new writing project.  I’d like to sleep well more than a single night each week (sometimes I’m lucky and get two- whoo hoo!).  Let’s not talk about the weight.  Apparently, the trauma of chemotherapy makes your body actually want to keep extra weight just in case you decide to indulge in the toxic cocktail again.  Yea, like that’s on my list.  I just can’t seem to convince those chubby little cells that it’s okay to let go.  I’ve threatened them, screamed at them, pleaded with them, begged them, bribed them (which was, no doubt, counterproductive) and sweet-talked them; all to no avail.  Nothing budges and neither do I.

I have come to realize that I’m tired.  Not physically so much, although I just don’t have the stamina I used to.  Before my treatment, I felt like I was in my early 30’s.  Now, I have no trouble believing I will be 50 in just 4 short months.  Now I just feel old, worn out and beaten down.  I remember neighbors hanging rugs out when I was a kid and beating them.  Sometimes, you could see where people walked on them because they had thin spots.  I’m that rug.  I keep getting beaten and the dust is gone.  There’s some bare spots and I just don’t cover as well as I used to.  Humor is cutting it less and less.  My well is beyond tapped, it’s bone dry and digging deeper won’t help.  Things that used to bring me joy just don’t any longer.  I’m tired, so tired and just want to rest.

I find myself pleading with God to do something – anything – to help me get myself together.  I journal, I blog, I work, I homeschool, I cook, I run a soccer shuttle and try to be present for my sons and husband.  And while I can generally put on the face, it’s becoming more apparent that what I’m doing just isn’t cutting it.  When my husband continues to ask “What’s wrong with you?” it’s apparent that life is coming apart at the seams.

We are vacationing in July, something we all need.  It will be good to get away even if it means renting a cabin and I still have to keep up with the cooking and straightening up.  Truth be told, I’d love a week by myself but I’m fully aware that after 48 hours my ears would be missing the sweet sounds of “I didn’t do it” and my arms would miss prying one child off another.  During chemo, I found that what most found mundane was what kept me sane.  Ironically, it’s the mundane that might be driving me toward some insanity at this point.

I’m not sure which is worse – being discontented and not knowing it or being discontented and not knowing what to do about it.  If you don’t know your discontented, then you can point fingers everywhere else.  If you do know, the process of becoming undiscontented (?) becomes your responsibility.  Trouble is you don’t know how to wrestle with it so it eventually overtakes you until you just want to either make yourself so busy that you don’t have to deal with it or crawl under a rock until it goes away.

Life after cancer becomes a new normal.  I HATE the new normal.  I want my old normal.  The one that doesn’t involve being discontented, quarterly pelvic exams and lying on a CT table twice a year.  I want one that involves continuing to be blissfully unaware of the damage cancer does to a person on a physical, mental and emotional level.  Sometimes I hate being the one who “gets it,”  and  I want to be happily ignorant again.  But I wasn’t given that choice.  This is it and I need to deal with it.

Maybe the “new” normal involves a time of discontent and introspection.  Maybe it means redefining myself beyond my disease.  While I am very proud that I beat OVCA, it’s not who I am any more than I am only a wife or only a mom.  Maybe it means extending myself some of that grace I tell others to extend to themselves.  Maybe it means being selfish sometimes and going off on my own to recharge.  Working at home and homeschooling tend to keep me tied to a single place.  While it’s grounding, it’s also very confining.

I’m thinking it means taking a lesson from the butterfly.  The caterpillar only knows one normal, chowing on leaves.  Then suddenly it gets the urge to curl up in its own custom made sleep sac and take a much needed rest.  When it wakes up, it’s a new normal.  It used to crawl and chomp on leaves.  Now it has to fly and slurp up nectar.  Seriously, how much more radical can you get?

I hate adapting when it’s not on my terms.  So I live in my own spring of discontent.  Hopefully, the summer will be one of enlightenment.