Out of Hiatus

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In the last few days, my phone has been peppered with texts and missed calls of people checking up on me. I will admit – I am really bad at texting people back. Sometimes it takes me 3-5 business days to respond or remember. Sometimes I respond in my head, and it doesn’t make it to the person.

I’ve also been on a writing hiatus, which I need now-and-then to recharge and just do LIFE. Admittedly, I do this with my social energy as well when I’m overwhelmed – I shut down, recharge, and reemerge. To say the last few months have been stressful may be the biggest hyperbole of the decade. We’ve all had to adjust, contemplate our mortality, and learn to live differently.

People have been throwing around the phrase “new normal” which is what I associated with chemotherapy, which really is a romantic way of saying “reality”. It’s our today, but it’s not our forever. That’s what I looked forward to when going through treatment and during this pandemic.

There are numbers, interviews, and statistics about almost everything. Mortality has been politicized and weaponized – tapping into fear for our present and future.

In the weeks leading up to the initial shut down, I stood in the hallway with a colleague who I deeply respect from a different academic department. We talked about connecting a piece of literature, “The Yellow Wallpaper”, and Maslow’s Hierarchy of Needs. I’ve always enjoyed volleying an idea to someone of a different angle to see what they may get out of it and what I may not be seeing from my vantage point. Looking back, I didn’t know how much we would all need the connections of the text and the needs we all require that the both of us pulled apart in an empty hallway fiber by fiber.

Regardless of science and psychology, there’s something which was not measured in the Maslow’s Hierarchy, could not be quantified in any cancer patient going through treatment, and also has not been measured in all of the statistics and reports in the media right now regarding COVID: HOPE.

The HOPE of a healthy and better future is what is making people strive toward a vaccine and others to elect to stay inside to save others.

That’s what we can do even if it seems all we can do is stay home to save other lives and the numbers are climbing. Hope is not a number and also not a passive practice. Hope is an ACTIVE expectation of a better future. We have to actively build others up in hope instead of tearing each other down with numbers. Hope is what pushes people past what they thought they could do! Hope is what is going to help us pull our heavy bodies from bed when all the arrows point towards the world falling apart.

Actively HOPE!

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Chemo & Covid

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Can I just say it? Chemo prepped me for Covid-19 and social distancing. 

I’m scared to go outside without a mask.

I’m not allowed outdoors.

I’ve been ordering random things in the mail and groceries because I cannot go to the store.

I don’t even know if I have “real” clothes anymore because I’m only wearing sweats and a t-shirt every day.

I changed my hair.

I’m getting tired of t.v. shows.

I’m not permitted to go to work.

I just want to be productive.

My family is obsessed with hand sanitizer and masks again.

Everyone is looking at me as if I’m sick or dying.

I’m constantly reminded that I have a pre-existing condition.

I’m feeling trapped and scared.

It’s hard to see the light at the end of the tunnel.

Some days – hope that it’ll be better is all I have.

I keep praying.

Consequences

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It’s taken me weeks to pump out this post – mostly because I wanted to avoid the swirl of emotions it would evoke in me – but here it is.

Last semester, I barely survived the workload I gave myself. I did too much. Wow, that last phrase was harder to write than I thought it would be. Mostly, it’s because it’s admitting I have limitations. I worked full-time as a high school teacher, ran a school club, taught three nights a week at the community college (11.5 credits), and finished out my last content class for my 2nd masters in creative writing. Crazy right?

The biggest thing I could’ve done without was teaching so much at the college at night. Kevin had to pick up my slack and take care of Shiloh when he got off at work since I would come home sometimes at 10PM. There were two reasons for this crazy schedule. The first is the most obvious – the money. Teaching at the local college provided extra income, but it wasn’t for everyday expenses – I worked myself to the bone to put every cent of the extra paycheck toward paying off more of what I call “chemo-bills”. The red numbers didn’t accumulate from the medical treatments of doing almost 6-months of chemo – but instead piled up from not being able to work during that time. Every cent of that extra pay when to debt reduction. I know it wasn’t my fault I got cancer and had to go through treatment; however, I want to feel like I’m capable of moving that financial mountain that came in the disease’s wake.

The other reason for working so much was to purposefully push to my limit. I know this sounds crazy, but I wanted to feel like I COULD do it – that I was capable.  The last few years have been infected with a series of limits that I wanted to push it, almost to prove I’m actually done with cancer, so I didn’t calculate the cost and consequences.

the consequences:

  • neglecting to blog
  • not giving enough attention to my students with grades and instruction
  • shoving in too many five-layer burritos into my stomach since I ate to keep going
  • doing C work in my grad class when I could’ve easily done A work and disappointing myself
  • becoming a ghost of a friend (I’m already so bad at texting back) and not seeing our small group
  • sleeping through Saturday mornings when we used to have big breakfasts
  • leaving Shiloh with his grandparents too long and not having any meals at home on the weekday because I worked late
  • my child migrating to sleep in our bed – asleep when I got home – crying “Mommy!” in his sleep

Last Sunday, the pastor preaching said something which drove it all in deep – “Just because you’re competent, don’t mean you should do it”. Working too much took its toll on my family – I felt successful on some level but a failure as a parent and friend.

Kevin and I sat down during the two weeks I was at home from teaching at the high school and decided we are going to take a full semester (since my life still operates on semesters) and not strive for anything. This is an active battle I’m fighting every hour. I want to feel limitless and accomplished. I have to actively choose differently.

We won’t pursue anything new and plan to just enjoy our time while we reset and rest as a family:

We aren’t going to look for a house – yet.

We aren’t going to start foster care training – yet.

I’m not teaching more than 3 credits at night.

 

We are going to go to the pool once a week as a family at the gym.

We are going to have family breakfasts on Sunday mornings before church with bacon and pancakes.

We are going to see family and friends regularly.

We are going to have dinner as a family 6 of 7 days a week.

I am going to enjoy my hobbies (writing, knitting, and baking).

I am going to remind myself every day that just because I can now – just because the effects of cancer aren’t weighing down my body or mind – doesn’t mean I have to do it. No one is looking to me to prove I’m no longer sick – even my surgery scars are fading into my flesh like a bad memory blending into the past.

Our Best

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My sides were cramping, not from the routine but from watching Shiloh’s skinny arms swing furiously with the pale yellow 1lb weights.

“Three, two, ONE!” he shouted as we finished the set on the TV, then he set the weights down and announced, “no weights!” He was now the instructor. Kevin and I couldn’t stop laughing. I ended up only working out one side of my body because I couldn’t keep a straight face and continue, resulting in going to work feeling lopsided.

Last Friday I had blood work done to check my CA-125 and had my regular 3-month check-up with my doctor. I was nervous about my numbers because I know I’m not as fit or healthy as I was last year. My appetite has gone up, and my schedule (self-inflicted), has not allowed me to work out as much as I’d like. When the numbers came back, it turns out I’m the healthiest I’ve ever been – not by the weight scale numbers from my bathroom scale but by the official lab work numbers which prove I’m doing well.

I don’t have time during the day to exercise and there are no gyms which have workout classes after 9PM for all the working parents who want to spend their awake hours with their children. I will always choose to spend time with my child over sweating miserably in a gym – always. So to try to promote a healthy lifestyle, I bought the 21-Fix which Shiloh and I like to do in the basement together. Since he couldn’t lift the 2lb weights comfortably, I ordered him some small yellow ones.

As we got started, Shiloh used the weights and followed along as best he would. I couldn’t help myself but call Kevin down to document the hilarity. With each weight clenched in his 3-year-old hands, Shiloh thrust his arms up and moved his uncoordinated torso and limbs without worrying about being embarrassed or the fear of failing. He was trying his best.

Our best may not look like someone else’s best. We prioritize different things and organize our lives in different shaped sized boxes, so the warehouses of our lives are all unique. We know our limitations – something which I’ve pushed to the edge this semester. Since I’m feeling healthier, I keep pushing myself to the limit to prove I no longer have physical limitations, to prove I’m no longer sick, to prove no one needs to take care of me like they had to when I had cancer.

But I don’t need to prove anything. No one is asking me to prove anything – it’s more me. Sometimes, though I know it doesn’t make any sense, I blame myself for the impact cancer had on my family.

I had to get additional scans because of pain I’ve been having around the scar tissue – hoping it’s not remnants or new growth or ovarian cancer. On Friday, I cried – not because I’m afraid I’ll die from cancer – but because I’m more annoyed at more tests poking their heads back into my life to remind me cancer even happened.

I am constantly reminding myself and others are constantly reminding me to stop pushing myself – just do my best – and maybe today, my best is just living.

Shredding

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For the last two nights, I’ve found myself in the basement sitting crisscross in the middle of the night. There were two piles in front of me: one with papers ready to whir in the shredder and a small mountain of junk mail envelopes. I couldn’t make them pass through the machine fast enough, ripping and destroying things I still don’t want to remember.

This time of year is always hard for me. I think it’s hard for anyone when they get close to their diagnosis date – however, mine is entangled with my son’s birth – which is another level of complex emotions.

I was able to suppress my sadness around Shiloh’s 3rd birthday by planning his party and keeping busy with work. All the nervous energy floating around October 18th was channeled into crafting a solar system cake and making a buttercream frosting for the first time. – which, by the way, was delicious. Facebook, this time to my annoyance, pulls posts from several years ago and transplants them at the top of your feed. At the top was my first picture with Shiloh in the NICU – the memory is still hazy. I still don’t know how to navigate the feelings of being simultaneously grateful and sad – it’s like being punched in the gut then warmly embraced afterward.

Sometimes sadness is the annoying friend who continues to try to get my attention – and I kept ignoring her calls until I began sorting through our junk mail.

There were crumpled envelopes with things I didn’t want to remember: the letter from my GYN oncologist allowing me to return to work, a pale blue script for hydromorphone 2mg I never filled, health insurance statements for chemo, and copies of checks to pay for health insurance though I wasn’t being paid. It was hard looking at these reminders, and my fingers frantically fumbled to shove them into the shredder.

The weight of the past threatened to pluck tears from my eyes, coupled with the searing pain of a dear friend’s passing due to breast cancer was made harder by her work account being deleted recently.

There were things, however, I couldn’t shred. Among them were mostly prayer and get-well-soon cards. I don’t know that I can read them this time of year, so I plan to put them in a storage box for mementos in the laundry room.

The other memory I want to remember – and only shred the sad parts – was when I held Shiloh and when we finally brought him home. In a way, I need to find a way to leave the sadness behind, acknowledge it happened, but then let it settle in the dust. I’m not there yet, but I hope as I get stronger that I’ll get better at this – this post-cancer life.

 

 

Tidbits!

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Hi everyone! So in addition to my regular posts, I wanted to start doing some short “tidbits” on things that have either made my life easier after chemo or just normal observations. I am still going to do my regular posts – but I don’t always have that much to say! I also think there are so many changes I’ve made lifestyle-wise after diagnosis and treatment of ovarian cancer that I never would’ve done beforehand or things that just made our lives easier. So here’s the first tidbit!

On the subject of laundry – we have A LOT. From the three of us to dog hair covered couch blankets, our machine is always running. After chemo, I became more sensitive to smells from fabric softener to detergents. Even the Free and Clear options still had chemicals in them I didn’t want to throw on my body.

After a trip to Colorado to visit a friend, I noticed wool dryer balls bouncing around in her machine. After doing more research, a lot of people moved to reusable laundry balls for the washer and wool fabric softener.  I was skeptical, but I wanted to try it to try to do things as chemical-free as possible. After having chemo pumped into my body to save me, I really can live without.

You guys – we have stinky clothes sometimes. So I threw Kevin’s gross basket clothes, undies Shiloh had an accident in, my work clothes, and dog couch blankets into the same load. IT WORKS!!! We haven’t used anything else for two months. I wish I would’ve known sooner. It’s cheaper than detergent since they’re reusable, and I’m not paranoid about chemicals touching my body. The only thing I will say is for the washing balls to leave your washer on “pre-soak”. When we need new ones, I’ll be reordering – or when we adopt so we don’t have to use baby detergent. No chemicals in – no chemicals on! Not going to lie – I also like the BOATLOAD of money we’re saving.

Here’s a link to the laundry balls!
https://amzn.to/317QjE2

Here’s a link to the wool fabric softening drying balls!
https://amzn.to/2LpOhde

There by Now

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Is it just me or does anyone else feel like it’s Christmas or their birthday when that direct deposit hits their account? Maybe my mind has been too focused on money and finances – but finally feeling like we’re not drowning is like I’m breathing for the first time.

As next payday approaches, Sept 13th, it marks finally being out of the cancer-induced pit. Though my body feels great and our families helped tremendously during chemotherapy, there were still things that needed to be paid while I received treatment and recovered.

I couldn’t emotionally stay in the apartment where I struggled through chemo and surgery recovery, so we moved. My job did not pay me for the six months I was out because I had not been in the county long enough then prorated my salary for another five months after that where I was making less than minimum wage. We paid for diapers and wipes – which any parent knows is its own category. There were a lot of things we were grateful for – especially both of our jobs being stable and family help – but each time I looked at our bank account during the last three years, all I saw were the consequences of cancer in every account.

As of this month, I finally have more than $100 saved for a house. A HOUSE YOU GUYS! Though I’m thrilled and am working my butt off to get there, I think about how if ovarian cancer didn’t grip me by my wrist that I may have been there by now. By now, we might have been in our own home. By now, we might have had another child. By now, I wouldn’t be advocating for September being Ovarian Cancer Awareness Month.

But it didn’t happen that way.

I wouldn’t have met wonderful people surviving and thriving either in their own treatments or working endlessly to find a cure. I wouldn’t have the strong drive and passion for helping others pull themselves up when cancer has been crushing them down. I wouldn’t have built the powerful relationships in our family and friends which couldn’t have been fortified with anything other than fire.

And THAT is priceless.

B+ Average

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The last time I was at my gyn-oncologist, she asked me if I was still doing a thousand things at one time. I smiled because I knew it was a compliment and a testament to how I’ve been feeling energetic and healthy. I said, “Of course”, and told her of all the things I’ve been kneading and molding into my life.

There was full-time teaching, then teaching at the community college at night, and finishing up my MFA in fiction. I bragged about how I accomplished my summer goal of potty training Shiloh, the MAGOPSA baby, and how I was sad one of my favorite members of their practice was now gone. As I looked up to the ceiling and missed the plastic butterflies of their old office while getting dressed, the changes around me really began to hit.

After setting the next appointment, I wandered to the infusion center in this new building and didn’t recognize anything. Though the carpet odor was gone, the familiarity was also gone. I didn’t think I’d miss it, but I did. Don’t get me wrong – I didn’t miss chemotherapy or all the trauma, but I missed the familiar faces and halls that saved my life. I couldn’t just walk in and say hello and hug the nurses who have seen the transition from sick, to bald, to healthy.

Late that night, Shiloh curled up to me as he fell asleep. Before cancer ever reared its ugly head into our lives, I always naively said I wouldn’t be one of those co-sleeping parents. I would want my own space. Then for a while, we were all in survival mode. Though I’ve said this before, I finally feel like I’m healthier than I’ve ever been. In the last few days, several of our closest friends and family have commented on how I looked good – good meaning healthy and vibrant. That has also been a mind shift.

As Shiloh’s breathing slowed to the purr of slumbering breaths in the dark, his little toes softly searched for my leg to make sure I was still there. Though I couldn’t look at the clock, I knew it was close to 10. I worked late setting up my classroom for the new school year, went to my appointment afterward, and there were still two assignments lingering which were due at midnight Denver time for my two grad classes. My brain began calculating the points which would be lost if I didn’t get up and do the assignment,  but my resolve crumbled as Shiloh’s little voice squeaked “sleep Mommy” and his soft toddler hands found my face. I chose to lose the small points rather than the seconds with my child.

I do a lot – I mean A LOT A LOT – but I thrive off of staying busy and feeling accomplished. I bloom under chaos, and yes, sometimes even crash hard, but I’m not sure I’d change any of it. Sometimes, I feel if I’m not doing then I’m not living my second chance at life. However, I’ve learned that I can’t be excellent in every area – and it’s coming to terms with that which is hard but also part of balancing my life and reshifting. I know myself, and in order to be healthy emotionally, I need to be working toward a goal – so in the deepest part of my recovery from chemotherapy, I started my Masters in Creative Writing to channel those loose emotions. I’m almost finished, but I’ve realized that I can’t be excellent in every area. I mean, I’d LOVE to, but we all only have our own capacity – emotional and physical – to what we can do. Though my capacity is more than the average person since I feel I’m a hummingbird just going to each an every new flower, I know even I have limits and something’s got to give. So I let those loose points for the assignments fall away, and for that class I received a 79%, bringing my overall  GPA for my second masters to a B+, but it was worth the time laying next to Shiloh.

Sometimes we have to be okay with knowing our limits. I’m not good at it, but I’m trying.

 

Purple Lines

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I try not to get self conscious when my only child smacks his little palms on the pudge like hands lapping water. He smiles because he doesn’t know any better. He smiles because he doesn’t know it makes me cringe. He smiles because he doesn’t know what happened. I realize his eyes have only seen my body as a mother and will only remember thick purple scars as Mommy’s lines. 

Before strolling out of the bathroom, I look at the misshapen belly and body fat which lingers with the absence of a gallbladder. At least that’s what I tell myself about the weight gain. A picture in a blue wooden frame with seashells hangs on the wall above the towel rack and my honeymoon body cranes over and reflects in the mirror. The old image seems to cast a thin shadow over me everytime I stand in the mirror. It was before Shiloh, before they found cancer, before doctors ripped and tore a child and organs out from me, before I could have no other children.

There is a tube of Mederma scar treatment gel in a metal basket on the sink, but I don’t grab it because the marks are too purple to make a difference. Before I leave the bathroom, I put on underclothes and wonder when is too old for children to see their mother in undergarments. I have friends who have little ones and strict rules about nakedness and others who stroll in their houses, nipples blazing, with their grown children lounging in boxers. I have yet to feel any awkwardness, so I place the invisible standard on a shelf for later.

I twist my stringy auburn hair into a bun, since it’s still not long enough to look like pre-cancer me, and slather the obligatory deodorant in the pits before leaving my frankenstein reflection. As I step into the bedroom away from the warm shower air, the crisp air conditioning raises goosebumps on my exposed skin. Before I can find a shirt from the myriad of haphazardly piled clean clothes baskets, a squeel of “Mommy!” tumbles off the bed and bounds toward me in a size 3T NASA tee and clad in newly potty trained undies. 

“Mommy! Mommy!” Shiloh says through a toothy smile and playfully slaps both hands on my insecurity. “You have a line,” he observes.

I’ve played his eventual “why” over in my mind thousands of times. He won’t ask today, but eventually Shiloh will. How does any parent tell their child something so big when your child’s understanding of death is that something has merely gone away? I don’t know how to tell him that when he was born, the doctors found stage IV ovarian cancer, and I wasn’t supposed to survive surgery. I don’t know how I will tell him that Mommy was bald during all his infant pictures because I was trying to survive chemotherapy. I don’t know how to tell him or myself that I cannot bear any more siblings because my organs were killing me and had to be removed. It’s a list of a few of the thousands of things I don’t know about being a parent.

I’m convinced most parents are winging it, even the Pintrest perfect pretties. We hope they don’t remember when we bumped their head against the door frame when carrying their slumbering bodies to bed. I’ve done it once or twice. Many of us are grateful our little humans continue to grow on dino chicken nuggets and apple juice. We convince ourselves that it doesn’t bother us when someone looks like they’re doing it better or that the stain on your shirt is probably a booger your offspring just wiped on you. Sometimes, we pretend parenthood is enough to mask the disappointment of our mom bodies in the mirror after a shower. There isn’t a user’s guide for raising each little human, so we all try our best, cry, drink wine, and do it again the next day with hope we haven’t screwed them up for life.

In this moment when Shiloh’s hands beat his life song on my drum, I caress his curiosity of the scars the only way I know how. Whether it’s the “right” response or not, I take it to chance.

‘“Shiloh was in Mommy’s tummy and then you went BOO DOOP and came out into the world,” I say cheerfully. Shiloh giggles and repeats boo doop and smushes his smile into the lines.

No talk of cancer, or sickness, or lost siblings. It’s the only way I know how to say it right now. I think that’s enough.

Emotional Capacity

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In my parents’ driveway, I sat talking excitedly to a friend I haven’t seen for months. We both love to talk so our words always climb over each other like overexcited puppies. I couldn’t even remember last time we made it out to a hangout with friends or even saw some of our closest friends face-to-face. There was a day during the last week of school where I had to shut myself up in my classroom, all of my students had graduated so I didn’t have to teach, and knew I had to stay away from others because I was not my best self.

Though I want to be all parts of everyone’s lives, my emotional meter was above capacity and I needed a time out.

Sometime in March, I activated my hermit-mode to survive teaching until the end of the year at both the high school and community college, finishing an online grad class, getting seniors students to walk on graduation day, prepping for the Below the Belt Stride and Thrive 5K/1-mile Run at Hopkins, and going to Colorado on vacation. I holed up into myself to survive and hoped others would understand – to include blogging.

When in Colorado, it took me a day or two to realize I was on vacation. The weight of the last few months slowly scaled off, and I found myself standing, snow flurries in the air in June, at the top of the Rockies. I stood at the cliff with arms stretched out. With arms extended, I knew I needed to push myself out of my hermit crab shell and see people again, and do things, and build relationships. The freedom of my arms floating at 14,000 feet reminded me how I needed to embrace other people in my life. I can’t love people if I’m closed up into myself. Sometimes I need the space to regroup, but I know I took too long this time.

I think most of us ebb and flow with our emotional capacity for people and the daily grind. I still haven’t figured out how to manage it without activating the hermit inside to recharge in isolation. I’m getting better – It’s all a part of processing cancer and trying to see it as a singular event rather than the background music to which every movement in my life plays. I want to get better and make an effort to process with others – with arms stretched wide.