Just Keep Running

Image by Drew Farwell on Unsplash

 I have been running for about 8 years.  Maybe longer. The time is starting to blur together.  I know that I started running after the birth of my third child and I wish that I had discovered running 5 years earlier. I think it would have been easier to cope with postpartum depression.  

When I first started running I ran across an old college classmate who had taken up running.  She was running marathons and half-marathons and I was struggling to get through a mile.  But I followed her posts and started asking for advice. She happily gave it to me and we ran our first race together about a year later.  I have continued to run through postpartum depression, to help me cope with my mother-in-laws unexpected passing, on good days and on tougher days.  Running hasn't forsaken me even if I've forsake it when times were too tough.

One of the things I've done for the last four or five years has been to belong to a virtual running community dedicated to mother runners. I'm usually just an observer even though I have participated in a few of their challenges in the winter months. They developed another program that was similar with a focus on workouts and not pace.  This is something that I needed after becoming burn out on racing. I have used training plans for years to help me maintain focus and motivation. But over the last couple of years I was losing my running mojo, but I didn't want to quit because I knew how much it helped with my mental frame of mind.  

Joining a virtual running community has helped me to continue running through the pandemic and through my cancer diagnosis. It has been so good for me to maintain some semblance of exercise. While I'm not running the same number of miles I did pre-cancer, I'm still running, albeit slowly, and that's good enough right now.  I share my thoughts on it in my article: Just Keep Running on Medium.  Running continues to be a mode of self care for me.

In this time where we are in quasi-quarantine how are you finding time for self care?  Pandemic fatigue is a real thing. I miss seeing my friends and family regularly. I miss volunteering at my children's school. I miss meeting friends at the gym.  But I also know that taking a break from that right now is better for me and my family while I continue to undergo treatment and try to heal my body from all the trauma bestowed upon me from having cancer 

I encourage you to find time to get outside if you can. Breathe in some fresh air. Read a book outside in the sunshine. Call a friend. Check in with someone.  Take care of yourself.

xoxo-The Discombobulated Mommy

Coping Differently

 When the pandemic hit, I was busy going breast cancer diagnosis and treatment.  I was busy trying to hold it together for my family. My house looked like a tornado hit it and I spent a lot of time resting. 

Each of my children have coped different with my diagnosis and treatment.  It's interesting to see how each of them handle the news.

My youngest, is ever ready with my "fwo-up" bucket. Fortunately, after finding the right medication, I did not have nausea. I had wicked headaches that were cleared up with a prescription medication.  On my treatment days she would sit and color on the bed next to me while I napped.  

My third born also hovered on the bed. He and the youngest had an unspoken agreement that I was never to be left alone. So they would take turns, each one sitting with me while I napped. While the youngest would sit and color quietly, the 9 yo sat reading at the foot of the bed. Whenever I opened my eyes I would see one of them standing guard.

My oldest daughter spent her time helping her younger siblings. She took them out for walks around the neighborhood, helped with homework, or assisted me if I needed anything. She has a nurturing nature and I am so blessed to have her. Often, she was the one that made sure that the two youngest attended their distance learning in the spring. 

Unbeknownst to me, my oldest child was coping by writing.  He kept it from me while he develop his stories and created a website. For the last 4-5 months he has been busily tapping away at his keyboard developing characters. When he was ready to share his work, he was already knee deep in several stories. I could not have been more impressed. As a fellow writer, I am incredibly proud of him and all that he has done. As his mama, I am beyond tickled that he is following in my footsteps, surpassing me, and already a better writer than I could ever hope to be. 

He had a harder time assisting around the house and spent his time buried in his work and the worlds that he created.  We all cope differently. 

I've finally had a chance to read some of his pieces. If you are looking for something new to read, check out his work on: https://edgeofstory.com

You won't be disappointed. 

As for me, I've turned the corner on my treatment. I'm going to less appointments. I've finished chemo and radiation and now go in only every 3 weeks for Herceptin.  That will continue for about another year. I've also started taking tamoxifen, a drug that will hopefully prevent developing breast cancer again.  I get to take that drug for about 5-10 years. So far, I've responded well to treatment. 

I've continued my own writing. You can find more of my recent work on Medium. Check it out, if you haven't already. I'll post links to specific articles in future posts.  

In the meantime, be well and happy reading!

Ruminations on Elijah McClain

This morning I woke up and the kids and I sang and danced to the Hamilton Soundtrack as our celebration for "No Chemo Wednesdsay."  

This pandemic journey is still so surreal.  Even as I sing and dance with my kids, I have been thinking hard about case of Elijah McClain. Do you know his story? This young man was walking home last August and was stopped for suspicious behavior. Conversations with family and friends point that Elijah may have been neurodivergent.  The police stopped him, there was an escalation, and the young man was subsequently pushed to the ground. He was put in a carotid hold, he passed out, he threw up several times, and then was given a dose of ketamine to help "subdue" him.  This story crushes me the more that I read about it. I have a neurodivergent son. My son is White and Elijah is Black, my son may never be stopped for suspicious behavior. But that doesn't mean that people wouldn't look at him differently. 

Elijah's story worries me on many levels. I wonder if the law enforcement are taught effective de-escalation tactics and if they are taught about how to work with neurodivergent people. There is still so much misunderstanding that surrounds autism and neurodivergency that people do not know what to do.  

What happened to Elijah is a tragedy and it's taken 10 months for the case to be investigated thoroughly. It was originally closed and written off because the Elijah's death was "undetermined."  I have serious doubts about that and excuse my language, but I call bullshit. 

I have a lot of thoughts on this and have written two article; one about Elijah and neurodivergency and the other asking for accountability in his death.  You can find them here: Elijah McClain: Say His Name and Accountability in the Case of Elijah McClain

As a mother of a neurodivergent son, I feel it is my responsibility to share Elijah's story.  His death is an injustice and we should examine how law enforcement is not only taught to work with neurodivergent people, but also be held accountable for their actions.  

Done with Chemo and Next Steps

I am officially finished with chemotherapy! I had my last blood draw and chemo appointment last week. I am thrilled to be done and my poor body needs the rest.  My port area is slightly bruised from all the sticks. I have found that if I drink about 3-4 liters of water a day my body does a really good job of flushing out all the toxins. If I am not good with my water intake, I feel pretty lousy.  

Last week I also had a CT scan and my radiation oncologist is developing a plan for my radiation treatment. I still think it's weird to say I have oncologists (plural).  Who am I?

Overall, my medical oncologist is pretty happy with how I have handled chemo. I still have side affects like edema and a change in my eyesight. I'm hoping that the swelling in my body will go down since I am no longer going to chemo and that my eyesight will go back to what it was. 

I did a happy dance on my way out the door of my last chemo appointment. I'll have to go back every three weeks for targeted therapy (Herceptin) through my port. But the nurses said that it should not make me feel as fatigued as chemo. That would be a nice change. 

I begin radiation next week and it will be everyday for 5  days/week for four weeks. The side affects are a wicked sunburn and fatigue.  Once that's over, I'll be put on Tamoxifen.  So much treatment! But the goal is to prevent the cancer from recurring so I'll take it.  

This sure has been a weird 2020. I found the lump in my breast and then our country went into lockdown for the pandemic. My journey started in January and it's now 5 months later.  

This is the first summer without a swim season in 9 years and the kids are adjusting pretty well. Except that the third kid has already been to urgent care due to a slip n slide injury. He managed to cut his ear and they needed to glue it back together.  This is the same kid who broke his nose three times before he was three, got a lego lodged up his nose several years later, cut is eyebrow during swim practice and needed stitches.  This is about par for the course for him, but I feel like I need to wrap him in bubble wrap for the rest of his life to protect him. He will always keep me on my toes. 

I'm still writing and a have a few things posted on Medium.  Here's the article about my last chemo appointment: Cancer in Quarantine Diaries: Getting to Know You

I have a few more articles I'll share with you.  In the meantime, let's keep moving forward.  

The Haircut

In late March, before the world shut down, I went to the salon for my last professional haircut. The big haircut was a milestone in my cancer journey.  There are so many steps during this journey. I'm a person who hates blood draws, injections for vaccinations, and surgery.  I would never have made a good health professional.   Here I am with getting poked and prodded on a weekly basis and sometimes multiple times a week.

Getting the first big haircut during my cancer journey didn't physically hurt.  But it definitely affected me.  My oncologist strongly suggested I cut my hair because the treatment he recommended would make me lose my hair.  I hate to admit that I cried my stylist cut my hair. It really wasn't so much about the hair as it that it was one more step. One more thing I had to do.  

When I started this journey I was so overwhelmed with the number of appointments and the barrage of information I received from various sources. For many weeks, I was in a state of shock trying to absorb the details.  I was also trying to keep up a brave front for my kids.  I think that's been the hardest part.  I never want to scare them.  But truth be told, my husband and I were scared.  We didn't always have the answers for them. I still feel like we don't. 

Before and After

I wrote an essay about what it was like getting my first "big" haircut in preparation for possibly losing most of my hair, if not all of it, due to chemotherapy.  You can find it here: Cancer in Quarantine Diaries: The Haircut. This was one time in the previous six weeks where I did not have an immediate family member nearby and I could be vulnerable.  I did not have to put on brave face for my children, or even my husband.  My husband has walked alongside me during this entire journey, but I still want to protect him from my own uncertainty and grief.  It's hard to watch my husband suffer with me.  During the haircut I was able to cry freely.  When Julina started crying with me as she cut my hair, I knew she felt my fear and uncertainty.  She also gave me a haircut to move confidently into the next stage.

One of the blessings about the journey is that friends and family have reached out with love and support.  I didn't expect to get so much support from the salon I frequent.  I knew that my stylist, Julina, would approach the situation with compassion.  But I didn't expect all the love and support I received form the other stylists and their clients.  Truly.

I know we were headed into a lockdown soon and that in some ways this journey was going to be more solo than I would have anticipated or preferred.  It's still weird that when I finish the majority of my treatment, her will be people who I haven't seen because of the pandemic who won't even know that I have been going through cancer treatment.  It's not something I have felt comfortable sharing on all of my social media platforms, because I don't want the sad eyes and I'm still processing.  Can you still process something if it's been going on for two and half months.  If you've been following the blog for the last few weeks and have been reading my stories.  I'd still appreciate the prayers. 

Looking to the Blessed Mother for Hope

This from the annual May crowning at my FIL's home last year

My faith is a big part of who I am. I am grateful for the hope it gives me. My faith has grown so much in the last few months and I will touch more about that in another post. I just need to sort the words in my head. In the meantime I've been doing a little more praying and a lot more of giving thanks. It seems weird to say that I'm thankful in the time of having cancer during a pandemic, but I am.

May is a time that my family gathers together to takes time to remember those who have passed before us. We do it during the annual May crowning. Before becoming Catholic, I did not always understand the fascination with Mary.  Jesus has always been the focus of my faith and how I follow His word.  But over the last 14 years, I have learned to look to her for her example of faith. She was the first one to say "yes" to Him. That is a pretty darn big "yes" when she carried the Son of God. Not only does she teach us obedience, she also teaches us faith and sacrifice.

I am learning to love my children as Mary loved Jesus. It's not as easy as she makes it look.  Sometimes my children try my patience to the point that I need to give myself a time out so that I don't say anything that I'll regret.  Sometimes they make me say a whole lotta bad words in my head as they try to push their boundaries and establish their independence. It's all developmentally normal, but it does make me weep every so often. And some days, more often than I'd like to admit.

During this time of cancer in quarantine, I've been waking up every morning and pray a Hail Mary before starting the day. There is something about starting my day with a prayer that I feel less alone.  It doesn't mean that the day will necessary be sunshine and roses, but it does start my day with a better attitude.  In this time of uncertainty, I look to the Blessed Mother for hope and guidance.  She's seen her more than her fair share of hardship and grief.

I share my thoughts in an essay I wrote for Medium: Missing the Crowning of Mary and Looking for Hope.

Where do you look for hope? Are you able to find it through out your day? I firmly believe that we are not alone, but sometimes you have to be willing to look.

I pray that you are safe and healthy. Thank you for taking the time to read my blog posts and my "diary" entries on Medium.  Peace be with you.

The Loss of a Swim Season

My kiddo swimming last summer

We got the word last night that our summer swim season has officially been canceled. My husband says that I am oddly conflicted by it. He's right. I am. I am undoubtedly relieved that we can continue to limit the germs that come home, but I'm grieving, too. I've been holding on to hope that things are getting better.  But the loss of the season is a reminder that we're not quite there, yet. I'm still processing my feelings. Underneath it all I know that losing the summer swim season has less to do with missing out on a summer staple, and has more to do with my current situation.  It's not the swim season. It's missing my community, missing my extended family, missing my friends, and the loss of certainty.  I try to process my grief in my latest article: The Loss of a Swim Season and Stages of Grief

What Will my Children Remember?

I'm still grappling with my diagnosis of HER2+ breast cancer. I haven't made it public on social media and I'm just starting to share it here.  I have so many emotions that envelope me. There are good days and there are bad days. There are days I feel like a warrior and there are days that I just want to snuggle in and hunker down and ride out the wave of grief and terror in the safety of my family room couch.  A lot of my emotions are tied to how my diagnosis and illness affect my children.  It's always been about my children.  I find that writing about my journey, my fears, my thoughts helps me to process all of it.  And sometimes it just too big for me.  I have big feelings and always have. My concern is how to allow my feelings to come out and how it affects my children. I don't want to scare them, but if I don't show some of the hardships, then it is a lie.

Most of the time when people ask "How are you?" I tell them the standard answer: fatigued.  Fatigue is a safe answer.  People are okay with that answer. They can understand fatigue.  But not all of them understand the terror or the rage. I reserve those answers for my husband during the long evening walks around the neighborhood. I don't have to hide my feelings from him. He lets me cry and yell and throw things.  I also share my real struggles with a friend who has undergone the pain of breast cancer.  She doesn't chastise me for being angry.  She doesn't tell me that I can't be angry.  She tells me straight on: "Dude, it's sucks." And while she won't let me pity myself, she also doesn't tell me it's going to be easy or that it's all going to be okay, but because we quite frankly don't know.  She sends the virtual hug and raises a glass to me and stands with me in solidarity.

And through it all, I am still in shock that I have breast cancer. I also know that I can frame this experience for my children.  The world is in a standstill right now. We're all sheltering at home. In some ways this makes it easier, because then we don't have to worry as much about the germs that we can bring in from the outside and we have a better control of what we touch or who we interact with. For my husband, it's the grocery store.  For me it's the lab for the weekly blood draws and the oncology nurses and the reclining chair for my weekly infusions.  It's much harder to rein in four children who would interact with easily a hundred people in a given day if they were attending school.  So I'm grateful that they are home. They understand the seriousness of my illness and to their credit, not one of them has complained about having to stay home.

We've spent our time watching movies, working on puzzles, coloring, listening to books, reading books, and cooking s'mores over the fire pit.  My children have seen the fatigue, the naps, and the tears. I hope that's not the only thing they see and I write about it here: What will my Children Remember?

It's a journey. I'm still processing. And through it all I'm just as discombobulated as ever.

New Perspectives

I have been working on my writing journey.  Last year my story "Running Full Circle" was published in Chicken Soup for the Soul.  (Happy Dance!) It was such a thrill to have a story published.  Since then, I have been dedicating time to my craft when the littlest one was in preschool. It was all a precursor to next year where I would have more time to write. I was using the 3-4 hours a week I had available to write.  I've continued to submit my work, and have another story that has been accepted and due to the current situation with COVID-19, the publishers are waiting to have it go out to the masses. When it does, I'll make sure to post it here and let you know.

As you know, the world has changed tremendously. The kids are home full time and are getting their education via distance learning.  Our house has more laptops than seems normal.  Time that was dedicated to writing is now used for supporting the kids while they learn from home, figuring out our new normal, and I really need to drop the "new" because now after 8 weeks it's just "normal."  I'm not writing as often as I would like and when even when I can it is punctuated with doctor's appointments and fatigue.

While I wait for my next story to be submitted (details to come!) I decided to write for Medium.  If you are not sure what that means, Medium is an online platform for reading stories from all around the world.  It also makes a way for writers to share their work. I took the plunge and published an article I've been working on.

Here it is if you'd like to read it: Cancer in Quarantine: Perspectives

 I have so much more to say on the topic, but my thoughts are still simmering.