introductions

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Hi. My name is Lindsay. I’ve had depression and anxiety for what feels like forever and the last nearly 4 years have given me a run for my money. In August of 2015 I gave birth to my beautiful and vivacious toddler. At my six-week check-up my nurse looked at me and said, “let’s talk about you.” After our 30-minute conversation, she prescribed Lexapro. I was experiencing significant post-partum anxiety and likely a heavy dose of depression.

Fast forward to April 4, 2017, I received my first diagnosis of cervical cancer. I say first, because since then, I’ve been diagnosed and/or the cancer has spread three different times.

What they either didn’t tell me at my first diagnosis or I don’t remember hearing is that while they could “treat” my cancer, the treatment would lead to a variety of other issues most of which are physical and mental damage. I am working hard to heal from it all.

I’ve had thirteen rounds of treatment–1 chemotherapy; 1 internal radiation, 4 rounds of external radiation; and around 6 or 7 (I honestly lost count) of immunotherapy. Additionally, I have embraced many modalities of “non-Western” approaches to healing. Including, acupuncture, naturopathy, therapy, Qi Quigong, vitamin IV, and somatic experiencing. Most days I’m not sure exactly what my body or mind are doing.

I have continued to strive for perfection in raising a thriving toddler, being married to the best man I’ve ever met, being a daughter, sister, aunt, niece, granddaughter, and cousin, friend, and co-worker. I logically know that I didn’t cause my cancer and I still feel conflicted about how it also impacts those around me.

2 months ago, I resigned from my “career” of 16 years. At the time, I had hit the point where my body literally told me you need a break (I will share more about that later). I did, however, at the time also recognize that my brain would still require stimulation.

I believe this blog is either several years in the making or simply a way to stimulate my brain a little. My intention is to tell my story. Mostly in the hopes that it will make someone else think or say, “I’m not the only one.” And, if I’m being honest, I would love to make people laugh.

Seriously, it won’t be all doom and gloom. I mean, I have a 3-year-old. And, in my experience, sometimes you must laugh. After my first diagnosis, I wrote one Caring Bridge post titled, “My I’m not dying story,” which made me laugh. Then, before I began my first treatment, I had a party and asked if I could register for gifts. My wonderful friends did bring several gifts. Since then, primarily because of my family, I have had numerous (some could say inappropriate) funny moments.

So, if you’re interested in learning specifics about my experience with cancer or with my love/hate relationship with raising a toddler. Please feel free to read on and stay connected. If you know someone who you think may benefit, please share. Honestly, if this turned into a way to generate income, I wouldn’t mind. 😊

Know that there will be things written here that I may not have verbalized yet, even if I love you a lot. I may, at times, write things that are conflicting and/or hypocritical AND there may be things written here that offend you. If that happens, it’s not my intention. Oh, and, grammar isn’t my passion.

I will close my first post by saying, over the last couple of years, I’ve discovered that my greatest blessings and most discouraging curses are my toddler and the fact that I haven’t lost my hair.

Through the Fog

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Illness

Rereading my last post is still painful. My heart mind body and soul felt completely broken that Saturday night. And, the last few weeks haven’t been easy, but I do feel like the fog is lifting a bit. 

I say that because my head has felt mostly foggy since I got the most recent diagnosis. A dear friend recently asked me to describe exactly how I’ve been feeling. It was an honest and thoughtful question. It helped me begin to articulate it to myself. 

It is challenging, and not incredibly productive, to try and decipher how I’m feeling with what I’m feeling. I’ve been trying hard to determine the difference between how I feel physically compared to how I feel mentally. In reality, they are so intertwined that I’m not even trying anymore. 

Overall, I mostly feel tired. Sleeping can be a challenge because of the pain, but thanks to my providers and family, I’ve found a combination of ‘remedies’ that allow me to get a full nights sleep. 

As far as the rest of how I’ve been feeling, here goes. Like I’ve mentioned many times, the bone pain is pretty miserable. I have noticed, however that the sensations associated with the pain change. Most times it’s feels like a cold burn. Thankfully it’s relegated to the mid-upper right side of my back and my right rib cage. Pain meds do help and I still try to use them cautiously. I guess I’m not as worried about addiction anymore, but they cause constipation and severe irritation. 

The other thing that has been heightened since the diagnosis is that I tend to feel extremely lightheaded. My brain is foggy and I can’t get up and move too fast. My blood pressure has been very low and I’m running anemic. That definitely explains the physical symptoms but I also believe this has a lot to do with my mental health and the shock. 

It really shouldn’t be a surprise to anyone, but I am experiencing severe depression and grief. My therapist gave me information about the difference between depression and grief. There are several categories or issues that vary with depression versus grief. 

The ones that resonate most with me are the issues with cognitive schema (when you’re depressed the focus is on yourself with persistent, distorted, and negative perceptions of self versus grieving when the focus is on the loss and the future) and emotional state (when you’re depressed your emotional state is fixed, feelings of withdrawal and despair versus grief when your emotional state is variable.) A few weeks ago the depression was much stronger than the grief, but now I feel more grief. 

I am on a back and forth seesaw of wanting to isolate versus wanting to be around others. Sometimes it feels awkward to be around people, and other times, I can’t stand the thought of being alone. I’m doing my best to honor what I want. I apologize if you’ve tried to reach me and I’ve been unresponsive. My days continue to be filled with appointments and my mood is unpredictable. 

Life has been a series of going through the motions. Excited for and dreading the few hours I have with Finn at the end of the day. It’s an interesting dynamic of wanting to spend as much time with him as possible, not having much energy AND still not always enjoying being a mom. Regardless of my health he’s still a toddler. 🥴

Rather than try to force too much, because I don’t think it’s good for either of us, we’ve fallen into a manageable night time routine that makes me feel better. 

For about 30 minutes before bed, I simply lay with Finn. He’s allowed to watch the iPad and I read my book. It works for us because we’re together and doing our own thing. Every couple of minutes he will look up at me and give me the sweetest, most genuine smile. That helps fill my soul back up. 

My mom and husband have spent the most time with me lately. Their love and support have literally and figuratively carried me through the past couple of weeks. I can’t begin the describe how helpful it is to be able to be so vulnerable and continue to feel loved and safe. 

I have also made a few decisions about my treatment plan going forward and I love a good plan. 

I am adding new supplements to my existing alternative treatments of Vitamin C, Therapy, and acupuncture. My naturopathic doctor has a new regimen and we’ve learned a lot from Jane McLelland (How to Starve Cancer) and Joe Tippens (mycancerstory.rocks). 

A few days after my last post we met for a second time with my oncologist. She was a much better communicator. She explained that from a Western medical perspective, the most appropriate treatment would be a cocktail of three different chemo drugs. Two of which are the oldest and most toxic, BUT I could also choose to take just one of the drugs Avastin. That it is much less toxic and the side effects shouldn’t be too bad. She also believes that the chemo will help with quality of life by alleviating some of my pain. A chemo nurse who I talked to reassured me that she has seen people tolerate Avastin very well. So, I will be starting chemo on December 17. It will be one treatment every two or three weeks. If it’s horrible I will stop, but I’m not anticipating it will be. 

While it’s still incredibly scary, I have made a decision to be hopeful. I didn’t feel hopeful a few weeks ago. The news was too devastating and it literally knocked me on my ass. But my mind keeps seeking it out. At this point, I’d rather have hope than just sit here and wait to die. There is new research and development everyday. There are also many brave people who are embracing and sharing their journeys with non traditional approaches to healing. And much of it can be done at home with my family. 

Last, but certainly not least I continue to be grateful. I have access to so many more tools and resources than others do. And I am still so blessed by all of the big and little ways that people continue to support us. Everyone has hard things in their lives and I am overwhelmed by the kindness of the people around us. 

How do I make the hardest decision yet?

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Last week we received the most devastating news to date. The Keytruda is no longer working and the cancer has spread again. 

Mostly throughout my lymph nodes in my chest and along my vertebrae. 

My last option – from the western perspective – is more toxic chemo. To be clear though, I was told that the chemo is just a way to buy more time. It will not cure my “smart cancer.”

I was given an estimated timeline. If I don’t do the chemo I have about a year to live. If I do the chemo I can expect an additional 6 mos – 2 years. 

You may be, understandably, saying to yourself right now, “Of course do the chemo. Who wouldn’t want more time?”

Well here’s the real and honest truth. I already don’t feel well. I have been “managing” relentless pain for the past 12 months or so. Narcotics don’t touch my pain – and they wreak havoc on my GI. I’ve tried many type of pain relief – narcotics, marijuana, meditation, breathing. For fucks sake my mom bought us a couple thousand dollar bed in the hopes that I could sleep. The pain is worst at night. 


I have been “managing” horrible GI issues. It’s a “lovely” combination of constipation and diarrhea with a healthy dose of nausea. I am on a very restricted diet and I’ve tried various supplements, medications, etc. Mostly I stay close to home. For example, tonight I wanted to go watch my husband play in his band, but my body didn’t want me to. I am home sipping water and taking anti-nausea meds. 


The reality is the chemo will make me feel worse. Yes, it will buy me time, but at what cost. 


Then, there’s the other side of the coin. How could I consider limiting my time on this earth with my friends, family, and most importantly my dear husband and baby boy. 


And, how do I want my son to remember me? Do I take the year and feel as good as possible and enjoy my moments or do I become more incapacitated in the name of hope?


Maybe the additional time would allow for new treatment options. Keytruda didn’t exist 2 years ago. 


And, yes, I would be remiss to not mention that there may be alternative, non-traditional modalities to heal. And I’ve tried many of them. My prevailing thoughts about this is that I refuse to spend large amounts of time away from my husband and son without a guarantee. And, I refuse to disrupt my sons life more than it will already be. He is thriving and loves school. He is surrounded by a kind and compassionate community and he is staying there. 


If you know me well, you know my brain doesn’t function well without a plan, without a guiding light, so I can’t live in limbo for too long. And this is a horrific decision that nobody should have to make. 


I believe that nine out of ten people who read this will have a “story” about someone they know who did something and they were healed. If that is helpful for you to hold onto please do. It is not helpful to me or my family so please keep it to yourself. We already have full plates and enough thoughts to keep our heads spinning for many, many years. 


We know and are so appreciative of the fact that people want to help. Right now we don’t know what we need, but we promised ourselves to accept help when we can articulate what we want. 


Next week is mostly full of appointments. More time with my oncologist. Meeting with a spiritual advisor and my naturopathic doctor. Hopefully some time for self care and loving on my family. We need to gather and process more information. We need, as a family, to try and prioritize before I can make a decision. 


I have to choose between more time or better quality while I’m still here. 

back to school

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motherhood

Well, it’s been two weeks since Finnegan started back at Sunny Hollow Montessori and so far, things are going great (knock on wood.) This year is a transition for all three of us. It’s the first time that fall has come around and I’m not working.

The Norton household is currently divided when it comes to ‘back to school’ season. I have always loved it. I remember being younger and having anxiety before the first day of classes, but I also loved having new clothes and new school supplies. I still love a good notebook.

I think I was most excited about having a clean slate and a clear plan, via a syllabus, for what’s to come. I was told which chapters I should be reading and when there would be tests. I thrived in that environment. Sit me down in a desk, tell me the plan, and allow me to gain approval via good grades.

Growing up, I excelled in school. Thankfully, I am naturally smart and able to put concepts together easily. I honestly didn’t have to work terribly hard and always got good grades. That all changed when I was humbled by the even brighter minds around me at Macalester College. I had to learn quickly how to train my brain to study harder and think broader. Despite the harder work and more average grades, I still loved new semesters with new textbooks, new classes, and the, mostly, predictable syllabus.

Brad had a different experience. He is very, very intelligent, but admittedly hated being in school. To this day, he still hates back to school season. It’s one of the few things we fervently disagree on.

Unlike me, Brad didn’t thrive sitting in a desk being told what to do and when to do it. Much to his parents’ chagrin, he basically refused to do his homework and would hide his report cards. I LOVED showing off my report cards. It wasn’t that he couldn’t do it–he aced most of his tests–he just wasn’t in the right environment for his style of learning.

We had many conversations about our different experiences with school and it was hard for me to understand how my intelligent husband didn’t thrive like I did. It makes great fodder though when we compare post high school experiences. He beams with pride when the University of Iowa is recognized as one of the top party schools and as we watch the Big Ten sports teams on TV. And I am quick to remind him that my school was once dubbed the “Harvard of the Midwest.”

When it came time to discuss Finn’s school, Brad had high hopes that Finn would follow in my footsteps. That he would use his natural intelligence to thrive in a traditional academic environment. But something else happened. We found an even better solution for Finn. Isn’t that what parenting is all about? Making things better for your kids?

As we began discussing pre-school options, my mom suggested we consider Montessori. My younger sister had gone to Montessori and the only thing I could remember at the time was that they learned to spell phonetically, and I was a little nervous about how that would translate long-term. I’ve always trusted my mom’s opinion though, so we decided to investigate the options for Finn.

After a bit of online research, I decided that Montessori was probably the right approach and found the school where we would send Finn. Not only was the location super convenient, but one of the aides was my sister’s teacher. I felt more comfortable with the thought of sending Finn to a school where we knew someone.

Brad and I scheduled a tour and while it was brief, we were both satisfied enough that we submitted an application for Finn to start the next fall. With a little back and forth, we received confirmation in March 2018 that Finn had been accepted.

Throughout the years, I had also heard a lot about Sunny Hollow Montessori (SHM). It was one of the places that my cousin wanted her daughter, who is a few years older than Finn, to attend. I really admire my cousin’s parenting and trust her judgement, but for some reason I had convinced myself that Finn wouldn’t be able to get into SHM. Even thinking about it now I don’t honestly remember why I was convinced of that.

As you may know, I received my second diagnosis of cancer in April of 2018. I was once again in a deep spin and lashed out to find control over something. Despite my earlier hesitancy, I decided that there would be no harm in contacting SHM. At that point, we had only toured one school and I felt I owed it to my son to explore other options. Even if it felt like a long shot. He deserved it. And, I am so grateful that I did.

We first toured SHM either the second or third Thursday in April. My mom was also curious, so it was me, her, and Brad. The tour of SHM blew our minds. We first met with the admissions director–with several other anxious looking adults–then we all observed classrooms in the different levels. The casa classrooms were populated with kids aged three, four, and five. Lower elementary classrooms had a mix of first, second, and third graders. And, upper elementary was for fourth, fifth, and sixth graders.

Montessori environments are purposefully designed to be different than a traditional school. The biggest difference you immediately notice in casa and elementary is that the students choose where they want to do their work. There aren’t rows of desks all facing one wall. Rather there are various, precisely designed work areas. Some have tables and a chair or two, others are open.

The environments are designed to be intuitive and conducive to kids’ varying developmental needs. The learning areas are typically dedicated to either sensory, practical, language, math, or cultural experiences. There is a natural flow for kids and–my favorite–a large circle for younger kiddos to use physical energy when needed.

Visiting this environment at SHM was so impactful on both Brad and me. I delighted watching the casa aged kids learning how to care for themselves and others by cutting snacks. The lower elementary students were eager to tell me about the projects they were working on. The two who guided me, shared about the reports they were writing. Rather than being assigned a specific topic to research they got to pick something they were passionate about. Because they were passionate, they were much more excited about learning how to research, formulate a thesis and write a corresponding report.

The upper elementary kids were enchanting in their confidence and manners. One group of students was baking–learning about measurements. Another group was simultaneously engaged in some work at one of the computers and the others were fervently discussing a collaborative approach to helping the school develop for others.

I was delighted and Brad was emotional. He found the space that he would have thrived in as a kid.  A place where you have the freedom, within parameters, to lead your approach to education. To study the things that you are passionate about. The freedom to move around and to collaborate with others. I could tell he was a bit sad about the experience he missed, but even more so excited about what Finnegan would get to have.

We went full court press with the admissions process. It included the typical paperwork for any school admission and a time for the aides and admissions had the opportunity to observe Finn in a casa environment to find the best class for him!

To say we were thrilled when Finn was accepted at SHM is an understatement. It was such a better fit than the previous school and we haven’t regretted the decision since. Finn’s transition to school last year didn’t go quite as well as I had thought. It wasn’t that he didn’t want to go, he just wasn’t used to having to be up and out of the house on a schedule after spending the first three years home.

And while he didn’t–and still doesn’t–tell us much about what happens during the day we knew Finn was flourishing. We started noticing immediately his developmental progress and his different relationship with the environment he was in. One of the funniest things happened about two months after he had been at SHM. One night at dinner he asked for a wet napkin. Then, after each bite, he would delicately wipe his face and set his napkin back down. He certainly didn’t learn this from us. It was a new wonderful habit he had observed at school.

Finn at SHM Grandparents Day. Photo credit deborahsaulphotography

This year–the past two weeks–the transition has still been a little hard on Finnegan in the morning. While he is up A LOT earlier and eager to leave the house, once we get to school drop off is hard. He clings to my legs and isn’t shy to remind me if I don’t tell him I love him enough or leave too soon. While I love getting the affection it is hard to pull him off my leg and leave. I know he’s fine as soon as he heads down the hall to his locker though.

Most of the administrative staff and teachers/aides at SHM know about my illness and their kindness and generosity have meant the world to us. Our world is a bit different than other families we know and having a safe space for Finnegan helps more than they will ever know.

riding the ups and downs

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Illness

My last day of work–after having some sort of job for 18’ish years–was April 30. I had big plans for retirement. Remember, I was going to take my break? It didn’t last long.

The first week in May, I had my second colonoscopy that confirmed what we’d already deduced, the Keytruda was not responsible for the Ulcerative Colitis, but was severely agitated it. We needed to determine how to get the inflammation under control. Not only were my bathroom habits a bit much, the rapid weight loss was becoming alarming.

As with all my treatment, I sought a balance between the western medical approach and more “non-traditional” modalities. I was prescribed steroids from my GI to address the immediate flare. While not a long-term solution, they did provide relief. Then, I worked closely with my naturopath to determine what was best for long-term maintenance. I am so thankful for her work. She’s been able to find supplements that help cancer and my autoimmune issues. The newest in my repertoire is low dose naltrexone. Numerous studies have proven the long-term benefits, BUT it’s also what is given to alcoholics to repel alcohol. So, no more summer wine tasting or alcohol period.

I am also now on a Vitamin C IV regimen. I love and hate it. I thought it would make me feel energetic immediately and it didn’t. I do, however feel more energy a day or two after the infusion. I get them in a private clinic and the “infusion room” is the size of a small boardroom.

There are eight chairs and generally it is filled with people getting IVs of all sorts and they tend to be quite chatty. I don’t think I’m unkind and that’s just not my scene. It’s the same as the infusion room at Oncology. I don’t feel the need or desire to pontificate while getting IVs of any sort. Perhaps it’s because I’m feeling so vulnerable in those moments. Regardless, I prefer to keep my headphones on and listen to music or watch bad TV. I do at times feel like an outsider and think I’m being judged because I’m not participating in the conversations, but honestly, I don’t want to be there. And if it helps, I will keep going.

It was time for another scan the second week in May. Time sure flies when you’re having fun, right? My last round of Keytruda had been on February 26 the day after my 39th birthday. I had a nearly three-month break from treatment, and I was feeling confident. So confident that I booked a trip with my brother and we were leaving the night we got the results.

But my oncologist didn’t float into the room with the results. There was a new tumor on spine.

Before she could even explain what was happening, I noticed on a note on her paperwork for a day and time to meet with my radiologist. This struck me for two reasons. The first was that I would still be out of town when I was supposed see my radiologist and second radiation again, what the fuck?

Given the way Keytruda had been working and the positive results we had seen, I had anticipated the potential need to start infusions again, but I hadn’t considered needing to do more radiation. And, in fact, because of the inflammation, radiation was the only prescribed treatment.

Maybe I’m jaded, but I’ve started noticing more–or just having less patience for– lack of bedside manner. We met with my radiologist a few days after getting the scan results. Let me be clear, he has never had great bedside manner, but he is brilliant, and I’ve always trusted him with my treatment. This appointment though, I remember thinking that someone must have talked to him about his bedside manner. He looked at me and brightly said, “Hi Lindsay. Good to see you. How are you?”

He meant it in a friendly way, but I’d lost my filter and my response was ‘well I’m not great, I have another tumor.”

I promise that I try to be patient with people around me who don’t know what to say or with the best intentions say something stupid, but if your job is to engage people with cancer everyday you’d think you’d know a little better. Something along the lines of, “hi Lindsay. I’m sorry we’re seeing each other again under these circumstances. Let’s talk about what’s going on.” The slightest shift in positioning would have felt a million times better and more authentic.

Here’s where irony is really a bitch. I was given the exact same radiation plan and schedule I’d done Finn’s first week of school. This time, however, it was scheduled to happen during his last week of the school year. Cancer, yet again, got in the way of me thoroughly participating in major milestones with my son.

And, I got through the round of radiation without much complaint. Thankfully we had caught the tumor early enough that it didn’t hurt before treatment, but the post treatment pain was excruciating again. So, I once again began the battle in my brain of whether it was appropriate to take pain meds. With the history of addiction in my family, I’m always concerned about my ability to responsibly use prescriptions. And sometimes the pain is too harsh, and I need help.

Due to the circumstances, not being back on Keytruda and the spread, my next scan was scheduled for the first week in July. I had never had a scan so soon after finishing radiation and I was extremely anxious. It also happened to be the other week Finn had off from summer school. I learned an important lesson that week. Finn and I should not be alone together the morning before getting scan results. I’m not at my best and he can tell.

Once again, there was no floating into the room with the results. Despite the radiation, the tumor on my spine was “brighter.” It was technically too early to get conclusive results post treatment, but logically it should have been dimmer.

There was also another tumor on one of my right ribs. Funny, but not funny “ha-ha,” I’d been having a lot of pain on my right side. I thought it had been the pain moving around post-radiation, which it tends to do. That damn tumor pain…The news was devastating. My wall that was putting space between Finn and me started to rebuild immediately. I truly felt it at the time.

My oncologist advised getting back on Keytruda immediately. It was the best course of action and I was scheduled for three additional infusions (once every three weeks) with another scan right before the third round.

The “hope” is that I can be on Keytruda for as long as my body can protect itself from the inflammation. If/when the inflammation gets too bad, I could take a break, but not for very long. Of course my biggest fear was, what if it doesn’t work. I hadn’t had a tumor and NOT done radiation before, so this was new. Also, what if it works, but the inflammation becomes overwhelming again?

Well, I am relieved to bring you to the present day in the story. I have completed nine weeks of Keytruda infusions. I had a scan last Monday and the results came back as well as they could have. The tumor on my spine is gone and the tumor my rib is dimmer.

This was the news I was hoping for. Unfortunately, I don’t have the hope anymore that I will be magically cured, but the Keytruda is working. I will continue with at least two more rounds of treatment before scanning again.

This gives me around 8 eights weeks to be on as consistent of a routine as possible. Knowing when I will have treatment and how it impacts my energy allows me to add back in things that I love. I am spinning on my Peloton bike again. I will teach more spin classes. I’d also like to try and find a consulting project.

I won’t deny the part of my that is waiting for the inflammation and I’m remembering to breathe deeply, remaining diligent about my diet and supplements, and continuing to rest when I need to. This is my reality. I don’t know what will happen next. There will undoubtedly be ups and downs as I live with cancer.

all the words

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motherhood

As I’m sure I’ve mentioned before, or if I haven’t, Brad and I met at work. We started off as friendly co-workers, then friends, and then it turned into more. Some things about working together were challenging and others were great–and even helpful for our marriage.

We had a boss who was navigating a lot of structural change and believed in the power of identifying personalities and using that information to create dynamic teams. So, at one point we all took the Myers Briggs assessment.

Not surprisingly Brad is an introverted extrovert and I am an extroverted introvert. We are both fairly in the middle regarding our feelings/comfort with being “social” or “outgoing,” but how we get energy is different. Brad likes to talk, a lot, and I am much less talkative. Brad gains energy by conversing and telling stories. I internalize things and get more energy with solitude and quiet.

I don’t think its abnormal in a relationship for one person to be more talkative–and it has caused interesting dynamics in our relationship. Because we love each other so much, we’ve spent a lot of time learning how to balance or compromise on our needs for talking or not talking.

Brad does his best to allow me time, especially during conflict or in the morning to have some quiet space. This was particularly challenging for him when we were still driving to work together in the morning. In fact, one morning even though he could tell I was NOT in the mood to talk he was pretty much bursting at the seams and proclaimed, “but I’ve been quiet for the last 8 hours while we were sleeping.”

For my part, I have learned that if we’re experiencing conflict, I need to tell him that I know he feels the need to talk it out immediately, but that if we talked immediately, I would probably say unproductive things. And, I’m working on exchanging words in the mornings…

Brad can talk about nearly everything, but his favorite subjects (in no particular order) are, the Minnesota Vikings, Iowa football or basketball, the Twins, the Wild, the Lynx, other notable sports news, statistics/data/measurement, work, and politics. The chatter that is the funniest and most annoying is his love of odd phrases, comments, or fictional characters or stories. He’s generally doing it to f*ck with people and if you don’t know him, you’d likely find him very odd.

Brad couldn’t wait for Finn to be born and old enough to carry on a conversation. First, he’d be able to have someone who was excited to talk to him in the morning and second, he couldn’t wait until Finn started asking questions.

You’ve probably heard stories, seen memes, or had your own experiences where young children ask a question followed by a series of, “why, but why, why, but why.” I think we predominantly see this as frustrating or a nuisance for parents, but Brad couldn’t wait for that stage. He holds a lot of random knowledge in his head and is excited to share all the details with Finn. Each and every detail/nuance/side-story available will readily flow out of Brad’s mouth in a moment’s notice.

Once Finn was born, we both engaged him with quite a bit of one-sided dialogue. We really didn’t know what else to do. Neither Brad nor I were/are much for “baby talking” so he was getting the adult perspective on what was happening around us and in the world

And, I kept it up when Brad went back to work. I was doing my best not to lose my marbles being home with a baby, so I talked to him a lot. I would share the schedule for the day, my complaints (mostly about lack of sleep and freedom), my desires (to runaway to an exotic bedroom and sleep), my dreams (that I could sleep long enough to have dreams) and mostly the detailed plots of the TV shows we would watch to pass the time.

At the end of the day, Brad would come home from work excited to tell us about his day. I probably listened to him a solid 15-20% of the time. Finn, however, didn’t have an opinion so he was lucky enough to consume every detail. Crying didn’t get him out of it. Brad would just keep talking.

Finn’s first word was, “Bob.” Funny enough, Bob is a great friend who officiated our wedding, but I don’t think that’s who Finn was referring to, sorry Bob. And, if I’m being totally honest, it probably wasn’t really his first word, just a noise that was fun for him, but we took it and ran.

Bob or Bobber would then become (and still is) a fictional character who’s always trying to get Finn on the phone. He had a toy phone and when it would ring, Brad or I would answer and let Finn know that Bob or Bobber was on the phone and wanted to talk to him. When he was still younger, Finn would just look at us like we were idiots. As he got older and firmly established his dislike of talking on the phone, he would always refuse Bob/Bobber’s calls with a firm, “no!”

I’m fairly certain that dada came next and eventually mama. Soon after he had more and more words. Once he started chatting, he never really stopped. A boy after his daddy’s heart.

It started with normal baby chatter. Musings that only parents can translate. Then he moved to some “words” that he clearly knew what they meant, and we did our best to figure out. A favorite was “zaazaa’s” which meant socks or crackers depending on the circumstance.

Brad’s game, which I also love, is to deliberately pronounce distinct words to Finn and see if he can repeat them. While it has worked extremely well there have been a few notable, delightful mispronunciations. Including, “dumb fucks” (dump trucks), “didorns” (dinosaurs), “open sesaplease” (open sesame), “uhhmburge” (orange), and “muzeeaauuummm” (museum).

For the most part, though, we are blown away by the words and contexts that Finn uses regularly. Even without prompting. Once when I was ruining his life by insisting that he wear clothes, Finn looked at me while crying and said, “don’t put my shirt on over my tears, mama.” During another exchange, I told Finn it was time to go to sleep. He looked at me and said, “that’s a joke, mama.” When I asked why it was a joke, his response was, “because I’m funny.”

my chatty boy

Brad’s challenge this summer was to get Finn to repeat Xander Bogaerts, a player for the Boston Red Sox. Finn had no problem with the distinct name, and we’ve all been talking about Xander all summer. Pondering his favorite color(s), which songs he likes to sing, where his house is, and what it looks like.

Of course, there’s the good and bad that comes with raising a very tall (3’ 7”) toddler who is also very verbal. I worry that people who don’t know him judge his behavior because he looks and sounds like he’s at least 6, 7, or 8, but he just turned 4.

He can say the sweetest most kind things like, “Mama, I love you. You are strong and beautiful.” And the most unkind, hurtful thinks, “mama, I hate your face,” all within 30 seconds of each other. I do my best not to take it personally. I logically understand he doesn’t carry a deep context of the meanings of words and sometimes I don’t like his face either.

Finn has also used his verbal skills to further his passion for not eating most foods. Several weeks ago, we were in the car with my cousin and her five-year-old, Quinn. Quinn asked to eat some of the peanuts my cousin had in the car. When she offered some to Finn, he took one look and proudly declared, “I can’t I’m allergic to peanuts.” That is not true. In fact, one of the only “meals” he will eat these days is peanut butter and toast.

So, it turns out that Finn is almost as chatty as his dad, but he is also quite particular like his mom. Recently, we were all riding in the car together.  Brad was happily discussing (for the third or fourth time) the details of our day. From the back seat, Finn deadpanned, “Dad, you’ve already told me this many times. Stop talking now.” I had to stop myself from laughing out loud because I was thinking the same thing – Finn just verbalized it for us.

The toddler questioning hasn’t gone as smoothly as Brad had hoped. I mean, they have their moments where Finn asks a question and Brad gets to explain, but Finn doesn’t often have the attention span for brad’s detailed responses. Or Finn flat out refuses to accept fact. I’m not going to call that a “toddler” thing though, because it’s pretty rampant in our culture these days…

We’ve been diligent, and he learns in school, that respect, grace, and manners are important. And, we’ve taught him that he gets to take control of his body, i.e. he doesn’t have to give/receive physical forms of affection unless he’s comfortable. We that he’ll learn to not only protect his body but also respect the bodies of others around him.

The verbal part is still a challenge. We want him to have manners, understand the importance of saying “Thank you” “please” “I’m sorry” etc. so we’ve explained the why, but should we force him to say these things even if they are inauthentic? That is a serious question so if anyone has insights please share!

My favorite moments are when Finn and I are in the car together and he’s telling me stories – I love listening to his interpretations of his life and the world around him. I try to emulate his matter of fact, dreaming, in the moment perspective. He’s VERY, VERY clear on what he wants or doesn’t want and is NOT afraid to verbalize it.

f*ck sh*t a happy and sad story

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Illness

I started immunotherapy – Keytruda – last September. And, as I mentioned earlier, it wasn’t that bad. There was a schedule and minimal side effects. The hope with Keytruda was that would keep the cancer at bay, i.e. stop any additional spread and keep me more comfortable.

The results were mind blowing. I completed two infusions, waited two weeks, and then about 8 weeks after my first infusion had a scan.  We got great news. Not only had the cancer NOT spread it also was showing up dimmer on the scan.

Brad is an eternal optimist and I am an eternal pessimist. You put us together and there should be a middle ground and there sometimes is. He was, understandably, thrilled when we got the news. I was a little relieved and still a lot anxious.

I will say that despite my anxiety, getting the good news made the treatments even a little more bearable. My mind found some comfort in the fact that the cancer hadn’t spread, and my body relaxed.

After that first scan, the plan was to repeat the same routine. Complete two more infusions (six weeks), wait about two weeks and then have another scan before the third infusion.

As it always has, life continued. Brad and I were both working, Finn was in school, and he never slowed down. I still tried to get enough rest as needed but found myself having more and more energy. I was however, having a lot of neck pain and my ankle and knee were swelling a little.

The neck pain bothered me so bad that I called my oncologist and we had a scan about a week sooner than we would have. Then a miracle happened. We went to see the oncologist for the results of the scan. I had already convinced myself I had a tumor on my neck, but my oncologist floated into the room with tears of joy.

There was no evidence of cancer in my body. None. No tumor on my neck. No tumor on my spine. No cancer in my lymph nodes. It was the first time my oncologist hugged me, and I was stunned into silence.

My brain had been processing “living with cancer.” I don’t think that I had allowed myself the space to even hope for no more cancer. Several minutes later, when I finally found my voice again, I said, “great do I get to stop Keytruda.” Not that it was horrible, but for fucks sake I really wanted a break.

And my oncologist immediately replied, “No. Absolutely not.”  Keytruda is/was still so new and we needed to remain diligent. The gist of the rest of the conversation with my oncologist was that she hadn’t anticipated it to work as well as it did, and we still needed to give it more time.

There wasn’t enough data/documentation to know exactly what to do with these results, so the safest route was to continue. We made another plan for 2-3 more infusions and another scan. And, more importantly, she would consider allowing me to have the surgery to repair my ureter between infusions.

It’s funny the things that excite me now and hearing that I may be cleared to have surgery so I wouldn’t have to continue with my stent exchanges was thrilling!

The other best thing that happened at that appointment – a wall, that I didn’t even know was there, broke. I had been unconsciously building a wall between Finn and I because I didn’t want my illness to impact him. I was slowly, again unconsciously, distancing myself emotionally from him. I didn’t know I had been building it, but I felt it when it broke, and I cried tears of joy. I could completely and utterly love my baby again, because there was hope.

After the appointment, Brad and I went back to work. There was a big meeting and we really didn’t know what else to do. We wanted to celebrate the news with the people we spent most every day with. I think we were also both still stunned and maybe didn’t totally trust the results. Well, I know I didn’t, and I was also grateful.

So that appointment was early January and the great news gave me even more energy, but something else started happening. First, my knee and ankle kept swelling up. It was to the point where I completely stopped exercising and most days, I wore a knee brace to work.

In February I noticed that my appetite was decreasing and that my favorite comfort foods were making me nauseas. This was a FIRST for me. It was so much more noticeable because it was also my birthday and if you know me, you know I LOVE woullets cake. I barely made it through one piece without feeling horrendous.

Then, my digestive system really started to mess with me. I’m not much for “poop” talk and this is hard for me to delicately explain, but I’ll try. It started with severe constipation for about 10 days. Then, whenever I ate, it almost immediately came out the other end.

And often I was getting up several times a night to use the bathroom. Sometime in mid- to late-March it got to the point that whenever I would wake up to use the restroom, I knew it would be the time I would be awake for the rest of the day, because I would have to go multiple times minutes apart.

The worst was that I started not being able to control when and where I had to use the bathroom. And, I had a few accidents. Ugh…I was mortified.

It was time to consult with nearly everyone to determine what was happening. First up, acupuncture. Needles strategically placed to calm my nervous system. Of course, oncology was all up in there, but after another scan there was still NO cancer, but with my ailments there was also NO way, I would be cleared for the surgery to repair my stent.

Next up, Naturopath. What should/shouldn’t I be eating? Are there supplements to help? What’s happening?  Then, my friends from Gastroenterology. I don’t know if you remember, but I won’t forget that my first colonoscopy after my initial diagnoses showed minor ulcerative colitis.

Welp, after bringing in all the people who care for and treat my body – and another delightful colonoscopy – we learned that while the Keytruda was doing wonders for the cancer, it was also wreaking havoc on my GI. The inflammatory properties of the drug were too much and I was having a major flare of Ulcerative Colitis. It was also what was causing issues with my knee and ankle. Something so good was also evil.

Again, I hate poop talk and it’s hard for me to discuss, but it was so bad, that I did completely lose my appetite. With it, I also lost about 25 pounds and embraced a completely “modified” diet. To this day, it’s easier to tell you what I can/will eat: cooked vegetables, protein (except eggs), some gluten free snacks (mostly crackers), and some dairy alternatives (almond or coconut milk.) Even when I have my strongest cravings for cake or muffin or cookies, my mind and body won’t give in.

The kicker – it was so bad that I finally made the decision to quit my job. I mean I went through chemo and internal radiation and it wasn’t bad enough for me to let go of my job. But stress compounds the negative issues with my GI, so I had to get rid of additional stress.

On the positive side, because the Keytruda was so effective at eliminating the cancer and stopping any additional spread, I was given the “ok” to take a break. I was finally at the point where I embraced having a break from it all–the treatment of my cancer and work. I finally gave into allowing myself the time and focus to heal.

happy birthday

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motherhood

Finnegan was born at 2:11am on his birthdate, August 11, 2015. Much to everyone’s shock, he was actually medium size, weighing 8lbs 11oz and 21 inches long. Finn comes from a long line of very tall and big Norton men. At 6’4” or so, Brad is the smallest male in his family.

When I was around 6 months pregnant, I decided that I’d prefer to give birth at a birth center. There is a wonderful birth center near my house. I drove by it all the time and decided to tour. I fell in love with the facilities and the midwives I met.

I have never been a fan of hospitals. In fact, up until 4 years ago, I couldn’t enter a hospital without fainting. The birthing suites at the birth center were like the nicest hotel suites I’ve ever seen. They made me feel serene.

The downsides, to me, of delivering at the birth center were the potential of having to be sent to a hospital should there be any emergencies and not being able to have any pain medication. I learned later that I should have also been scared to death at the fact of leaving the birth center within 6 hours of delivering to go home.

My contractions started mid-morning on Sunday, August 9. I wasn’t convinced of what was happening, but I felt twinges every now and then. We had our Sunday night family dinner at Café Latte with my mom and sister. By then, the twinges were happening more frequently.

Still unsure of what was happening, Brad and I went home and decided to go to bed early. Around 9:30pm I decided we should call the midwife on duty. I was having active contractions and I still needed to wait. We spent the rest of the night counting and breathing.

Around 4:00am on Monday, August 10 the contractions were steady enough that we got the clearance to go to the birth center. Two of the most inspiring things about birth center were their philosophy of moving throughout labor and the beautiful large birthing tub.

I spent the next 14 hours in active labor, going in and out of the tub, lunging and squatting around the facility, and on grand avenue and didn’t have a baby to show for it. Sometime in the afternoon, I was dilated appropriately, but my water hadn’t broken so the midwives broke it for me. Still no baby.

After the facility closed for the day, I walked up and down the steps. I was exhausted and still no baby. Around 6:30pm we learned that I had stopped dilating. I had a choice to make, I could try and rest a little while then labor more or I could go to the hospital and get the drugs I needed to help dilate, but my midwife was hesitant because it wasn’t part of my birth plan.

I think it was 7’ish when I looked at everyone in the room, my husband, mother, midwife, and doula and very clearly said, “I need a fucking epidural.” The decision was made. Since it wasn’t technically an emergency, my poor husband had to drive me – contractions and all – to the hospital.

The hospital check-in went better than I anticipated and thankfully I wasn’t too late to get the epidural. They also gave me the medication to promote dilation. Before delivery, however, they also wanted me to try and sleep. I was so exhausted that there was concern I wouldn’t be able to push when needed.

I remember taking the weirdest 2-hour nap ever, then after about 2 hours and minimal pushing–thanks to all those lunges and squats–Finnegan was born! While it wasn’t part of my birth plan, it helped us all to have a few extra days of recovery in a hospital. That birthday was so monumental, and he’ll thankfully never remember.

A year later we were thrilled that despite the anxiety and lack of sleep Finn would reach another birthday and officially be 1. We were still blissfully ignorant to cancer. My biggest stressor was determining the best way to celebrate my baby’s first birthday.

I was more emotional than I thought I would be reflecting on the first year. Someone once said to me that with kids, the days are long, and the years fly by. That sentiment rang loud and true for us.

We had a wonderful party with family and Finn’s nanny. His uncle TJ and cousin Lyla even flew to Minnesota to celebrate with us! Because he loved “pup-pups” so much, I went all out on the dog theme. And, of course, we needed a cake from Woullet’s. Not just any cake, it needed to be a lady Baltimore (white) cake with white buttercream frosting, the same as our wedding cake – with a cupcake as Finn’s “smash” cake.

When the big moment came for the cake. I was so excited for my baby. Until then, I’d dutifully kept his food as free from sugar as possible. I was sure he would savor this cake as much as I did, but he’s Finnegan–the picky eater–and he was disappointed and dare I say, disgusted by his cupcake.

I was slightly sad and slightly proud. Finnegan’s food was still relatively healthy, and I didn’t have to worry about him wanting too much cake. Literal “laugh out loud.”

When the summer of 2017 rolled around things were different. We had a much more verbal almost two-year-old and we had lived through my first cancer diagnosis and treatment. We still hadn’t gotten the “cancer free” diagnosis, but by August I was starting to feel a little better.

I honestly don’t remember if there was a theme. Although I’m quite convinced, I would have had one. Given the fiasco with his cake during his first birthday party and his love of cookies, we opted for cookies instead of cake. Much to my chagrin, however, Finn asked where the cake was during his party…

The other great memory from Finn’s second birthday party is dump trucks. Sometime in May or June, Finn declared his love for dump trucks. He was very verbal and often mispronounced words. For example, dump truck was referred to as “dumb fuck.”

I lost count of how many dump trucks gifts he got, but as each was opened he gleefully declared, “dumb fuck,” “another baby dumb fuck,” or “a baby dumb fuck.” Everyone who attended the party laughed and laughed. And after the spring and early summer we’d all had we all needed to laugh.

Fast forward, again the years go by fast, to the summer of 2018. Our baby was going to turn three – and we’d had another big year. Between Finn’s second and third birthday, we learned first that I was cancer free, then that I had cancer again and we were still waiting.

His party was on a Saturday. The Thursday before I had a scan and the Friday before I had a stent exchange – illness was all around us. It didn’t stop me from wanting to have another great celebration for Finnegan!

By age 3, Finn understood the concept of birthday presents. He also was older and bigger and had a blast playing in ball pit with his Norton cousin’s and Joleen’s nephews. We had a bubble machine at each of his previous parties and he LOVED it again at his third birthday.

Finn was old enough to decide what dessert he wanted at his celebration and he requested cake and ice cream. Since he still loved(s) trucks and “construction vehicles” I ordered another lady Baltimore cake with white buttercream frosting from Woullet’s and they decorated it beautifully with a dump truck.

Another Woullet Masterpiece

We had a great celebration and a few days later learned that the cancer had spread again.

Two days ago, on August 11, 2019, we celebrated Finnegan James Norton’s fourth birthday party. 4!! What in the literal hell happened to my baby? I mean, I know where the time went, but seriously!?!?!

This year not only are we amid illness again, Finn also had his own accident and his broken arm. The weeks leading up to his birthday have been hard. Finn has been afraid from his accident. While he’s not in physical pain, he’s been emotionally quite upset. Not only is he expressing his fears around his own health, he’s also started verbally connecting his accident and subsequent hospital and doctor’s visits with my own illness. And, a week and a half ago, he declared that he didn’t want to turn 4 because he didn’t want to die.

So yeah, it’ been shitty. Last Tuesday, however, after staying home again and taking a record 3.5-hour nap, Finn seemed to bounce back. He was still apprehensive about getting old but admitted that he still wanted to have his party–and more importantly cake!

We drove to Woullet’s together that day and he proudly ordered his own birthday cake with a blue Tyrannosaurus Rex. The theme this year was dinosaurs. Given Finn’s physical limitations, I went all out on non-threatening dinosaur themed activities. Dinosaur eggs, streamers, coloring books, stamps, stickers, and inflatables.

Our new routine is to have Finn spend the night before his birthday at his grandparents’ house. That way Brad and I can spend the morning decorating the backyard and Finn returns home to his birthday wonderland. I also decided this year that I got to celebrate giving birth to Finn day by sleeping in a little.

This was the first year that we also invited friends from school–Malcolm and Charlotte. Finn was excited for his party so he could “officially” turn 4 and eat his cake. Overall, we had a great time celebrating with our friends and family and by the time it was over, Finn was exhausted and a little overwhelmed.

Honestly, he has been overwhelmed every year on his birthday. There is a lot of excitement and joy, but it’s also just a lot! I often wonder if it’s more for us than for him, but it also wouldn’t ever feel right not to celebrate the day our world was made better – Finnegan’s birthday.

i am lindsay

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Illness

My current talking therapist is brilliant. One of the things we work on a lot is separating me from the cancer. It may sound simple, “I am Lindsay not the cancer,” or “it’s not me it’s the cancer,” and for me it is very challenging.

I am Lindsay

I often think about not only how cancer has impacted my life, but how it has impacted so many people around me. I struggle with thinking that I am a burden and need to shift my perspective to cancer is a burden.

So, there we were last August with the news that cancer had once again made its way through different parts of my body. I remember clearly thinking a lot about hope. I felt determined to find the right definition. It needed to fit with the overwhelming fear of the continued recurrences. My thoughts began centering around, “not if, but when and where will the cancer be next.”

First things first, we needed to find out the “plan of attack.” I was still in a tremendous amount of pain. This is when I started taking the morphine and hydrocodone around the clock. It didn’t relieve the pain entirely but helped some.

The recommend course of treatment was to try a new type of radiation therapy called Cyberknife. From what I understood it was a more precise and accurate way to treat the tumor on my spine with the least amount of impact to my spinal cord. It’s a higher dosage of radiation in a shorter amount of time. I was told to expect 5-7 days of radiation.

Then, we needed to determine the most optimal way to systematically treat the cancer and ideally slow the spread. As luck would have it a new type of immunotherapy–Keytruda–had just been approved for Cervical cancer.

I learned that no matter where it spread, the cancer would always be referred to as it’s origin, hence the importance that it was approved for Cervical cancer. Keytruda is like chemotherapy in that it is an infusion, but the documented side effects were much less harmful than chemotherapy.

Chemotherapy was another option, but apparently there is only so much chemotherapy your body can handle and given my likely future of additional spreads, we didn’t want to “waste” any chemotherapy. And the dose I would need would be very high.

My oncologist assured me that hair loss was not a “likely” side effect of Keytruda, and I still had my doubts. My Keytruda schedule consisted of an infusion once every three weeks. There was also an urgency around having scans more frequently. No one knew how I would react to Keytruda and we needed to watch for additional spreads.

And finally, the kicker, we decided it was best for me to get a port. Throughout my treatments and surgeries, nurses learned that my veins “look great” and tend to roll. What that means is that they can insert the needle into the vein, but then it doesn’t stay. The experience can best be described as digging around in my veins.

A port is a surgically placed venous catheter that is on my chest. Upon one prick, it gives direct access to my veins. Of course, this was the best option given my future with infusions, but it knocked me off my axis.

I felt as if I was giving up or into the cancer. I had yet another surgery and then I had this thing protruding from me that hurt a lot. I felt ashamed and overly protective of my space. I wanted to hide my chest and I was constantly reminding Finn that he had to be careful, that “mama had a big owie on her chest.” I am happy to say, however, that almost a year later, I am grateful to have the port and it doesn’t bother me anymore.

I started my radiation the week that Finnegan started at his new school, Sunny Hollow Montessori. I wanted so badly to participate in every moment that I could and to be the best mom I could be as my baby made this huge transition. But that wasn’t the reality.

The radiation was short and terrible. It was a total of 7 rounds and much to my dismay, it made the pain worse. I didn’t know it could get worse and was under the impression from the way my radiologist talked about it that my pain would disappear immediately. I was wrong.

Honestly, though, the first round(s) of Keytruda weren’t bad. I was anxious before the infusion, but it only took about 45 minutes – chemo took a few hours. It definitely made me tired, but nothing compared to the fatigue from radiation. I didn’t get headaches or nausea. The effects were so minimal, that I was able to get by with taking about 1.5 days off every three weeks for the infusion. All in all, the schedule and treatment felt logistically manageable.

Amidst the newest spread and the new course of treatment, I had more prevalent thoughts of mortality. How much longer would I have. I learned later that was also, subconsciously, building a wall around myself. Primarily between Finn and me

My therapist had her work cut out for her to help me try and separate myself from cancer. A very effective exercise was having me draw what the cancer looks like.

I continuously remind myself. I didn’t cause cancer and cancer is not me. And, honestly, sometimes I want to be synonymous with the cancer. I sort of dabble in this world of, “today I am just Lindsay,” or “today, I am Lindsay with cancer.” I’ve tried to reflect a lot about why I juggle and/or pick and choose these two worlds.

I know when I’m “just being Lindsay” I am living my life regardless of illness. And I want those around me to do so as well. I can often feel in those moments that the cancer really isn’t my fault. And that my life is more than just cancer and treatment. I think that when I’m “Lindsay with cancer” I am folding in on myself and want additional rest, support, and kindness. Its an interesting dichotomy that I need to explore more.

music makes me lose control

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motherhood

I’m not sure what your music preferences are, but I’ve always loved hip hop and rap. Missy Elliott’s lyric, “music makes me lose control,” is one of my favorites. I love organization, calendars, files, timelines, to do’s, etc. I like to have a plan and be in control of the outcomes. I also love a great beat and getting lost in music – whether on a spin bike or on a dance floor. Having a child was the first monumental time that I felt completely out of control. Spoiler, the second was being diagnosed with cancer.

Despite my best laid plans, Finn came into our world like a hurricane. When he was a newborn, all sense of schedule, timing, outcomes were thrown right out of the window.  Well that’s not entirely true, there was one big outcome – keeping the baby alive.

As he grew and developed there were certain things that became more routine with Finn. It started primarily with sleep, when he started napping and sleeping more regularly during the night. Then, he started to observe the routines around mealtimes, play times, etc.

With each new milestone and development, some things got easier and/or can be expected and there are also new challenges that we didn’t plan for. For example, we were excited for Finn to be able to walk on his own, but then once he could, we realized we had to create a safer space and watch him closely. He’s also really, really fast.

Last September, Finn’s schedule became even more concrete when he started school at Sunny Hollow Montessori – more on why we chose Montessori and this school later.

We learned that Finn is not a morning person. He’s mostly ok with waking up, but then rather than getting ready and eating breakfast right away, so that we can get to school on time, he’d like to lounge about in his PJ’s. I mean, I totally get it!

Finn becoming a toddler, developing growing, and going to school, have made it a lot easier for me to handle being a mother. I feel as if I’m better prepared to make plans, schedule appointments, and find time for rest when he’s in school. But I was kidding myself to think we had control.

Last week, Finn broke his arm. I thought our plates were already full, but the universe apparently thought we could handle more.

Around 12:40 I got a call from school saying Finn had an accident. He fell from the monkey bars and landed on his arm. I’ve seen Finn have plenty of falls, bumps, knocks, etc. and he’s always bounced back. So, it was hard for me to comprehend that he wouldn’t just jump up from this.

I even asked school to call me back after a few minutes. They did and the second call confirmed that I needed to go get him. Thankfully, I was with my mom and she offered to go with as well.

When we arrived at school, my baby was laying on a mat in the office. He wasn’t scream crying or anything, but to see that level of inactivity, I knew something was wrong. I quickly knelt beside him and kissed his cheeks. He had a few tears in his eyes and told me his arm hurt bad.

I’m good at logistics and the fact was there was no way I, nor my mom, could physically move Finn from the mat to the car. Plus, he was really against moving. I asked him if he would let daddy pick him up and when he said “yes” I immediately called Brad.

Thirty minutes later, Brad walked in and saw his baby laying on the floor on a mat. Finnegan was strongly opposed to Brad picking him up so we decided to call an ambulance. Reflecting back, I still believe that it was the best decision. I didn’t want Brad or Finn to have any feelings associated with the pain I know Finn felt when he was moved.

my brave boy

Our brave boy was very polite and calm throughout the ambulance ride. He was delighted that he could see his daddy following us in his truck and marveled at the gadgets inside the ambulance.

We were brought directly to emergency orthopedics at Children’s hospital in St. Paul. Following very painful x-rays, we were informed that Finn’s arm was broken just above his right elbow. And, even worse, he would need to have surgery the following day so that the bone could be held in place to repair itself.

That night at home, before the surgery, brought Brad and I right back to newborn phase. We were hyper attentive, afraid, and didn’t sleep at all.

Finn’s surgery was Wednesday morning at 8:30 at Children’s hospital Minneapolis. Finn was a champ and the nurses and doctors were fantastic. Surgery went flawless and we were home by noon.

I truly believe that there is nothing worse than watching your child suffer. Seeing them in pain and not being able to fix it. Having no control over a situation that brought them harm.

The accident was horrible, and the recovery has not been easy. The first couple of days, Finn was exhausted and clearly in pain. Since then, he’s wrestled with restlessness and what I believe is fear of being back at school.

His spirit and emotions are on a roller coaster and I have absolutely no control over the situation. I barely know how to care for myself while I’m dealing with illness, let alone how to care for a toddler with a broken arm.

The scenario is out of my control and it is my job to care for and love my son. Both of which should be easy and can be very challenging. I feel like our society has painted a picture of what the perfect nurturing, strong mother should be. And, I don’t always feel that way.

I know I was–and will be–able to be there for, and protect, my baby at his most urgent moments. I am, however, struggling with the “mundane” day-to-day recovery. I’m using the tools I’ve gathered through MBSR and meditation. Attempting to live in the moment and breathe.

This morning we learned that Finn’s bone is healing well. He will get the pins out and his splint removed in two weeks. I don’t know how the next two weeks will go–we’re taking it a moment at a time.

One of the things that Finn also loves is music. In our best moments we’re either snuggling, having delightful conversations, or having incredible dance parties. In those moments, I’m not trying to control the schedule or outcome. I’m simply delighting in the presence of my greatest little love.

pain and spinning

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Illness

After finishing my 29 rounds of radiation I was depleted, and it was time to wait. Again, we needed to give the treatment 12 weeks to work before another scan. I’ve been asked so many times, “why do you have to wait so long?” It’s almost funny how many people lament about it.

I’ll let you in on a little secret – it’s not my decision to wait that long. I trust my doctors know what they’re doing, and the waiting is excruciating. And, sometimes it doesn’t feel like long enough to be blissfully ignorant either.

At least this time, it was a little easier to let my body rest. I had a few weeks off work, and I moved forward with more of the non-traditional approaches to healing. My brain still wanted to push it though.

I was most anxious to start spinning/indoor cycling again. I love it. I started spinning on my own around 12 years ago. I found it to be such an amazing workout. I think it’s the combination of the music, competition, being in a room full of others, but also having the ability to control your own bike speed and resistance. What really makes or breaks a spin working, in my opinion, is the energy of the instructor.

It became such a passion that when we were struggling to conceive, I started to think about becoming a certified instructor. Thankfully, I did get pregnant so I couldn’t proceed at that time. Then, however, when the post-partum became unbearable, Brad stepped in to help.

He surprised me with a Peloton bike. It’s an amazing spin bike for your home. The bike comes with a monitor and you can join live or on demand classes with world class instructors for any length of time at any time. It was, and still is, absolutely perfect. I still don’t know how much they cost. I think it’s a lot, but for us it was a life saver.

Around a year later, I became a certified instructor. I missed teaching so much. I wanted that energy back again. I wanted to create my great playlists, get caught up in the ride, and guide people through something I love so much.

So, I slowly started to teach again. I had to hold myself back from riding too hard on my own. I spent a lot of time teaching off the bike and started each class with my new mantra, “Listen to my words. Don’t look at my legs.” I taught in an intimate, friendly, and open community so people knew my story and were lovely. I think they also like my classes.

Sometime later in June, my back began hurting. It started as a dull pain and soon became unbearable.

My brain couldn’t handle it. What was happening. Where did this come from? Why? What is it? Cancer doesn’t hurt, does it? This is just a side effect of the radiation. No, this is in my head. It’s really not that bad but wait…I can’t sleep unless I’m in a certain position. This could be real.

Pain is a funny and very scary thing. I do believe you can think about it too much and perhaps mentally blow things up. My brain spun on this a lot. Also, there were, and continue to be times, when I think about my pain so much that I can even feel it move.  

I’ve always been comforted by physical touch, so I threw myself into finding ways to relieve the pain. I tried massage, stretching, deeper massage, Rolfing, reiki. I tried resting then thought maybe it hurt because I had rested too much so tried to exercise more.

I also tried to numb the pain. Spending hours watching bad TV, trying the medical marijuana again, lots of Advil, CBD cream, ice packs, heating pads. Some things provided short-term relief, but the pain got worse as time went on.

You may also be now asking yourself, why didn’t I go to the doctor. Remember the spotting episode. As I reflect, I think there’s a few reasons I didn’t go to the doctor right away. I had a stent exchange surgery in there and surely, they would notice if something was wrong. I also already had an appointment scheduled for my next scan. I spent a lot of time convincing myself that the pain was in my head. And, subconsciously, I don’t think I wanted to know what was wrong.

The second week in August was a big week. On Thursday I had my scan. On Friday I had my stent exchange and on Saturday we hosted Finn’s third birthday party. I was supposed to have my scan and gotten the results earlier, but schedules didn’t align. I was really upset that I had to carry the anxiety of waiting on the scan results – oh yeah, you don’t get those right away either – during Finn’s birthday.

We enjoyed the party the best we could and were completely exhausted. The next week we went to see my oncologist again. She didn’t float in the room. Along with additional lymph nodes, my spine also lit up on my scan. I innocently asked, “could that be what’s causing the pain?”

When pressed more, I explained how it had been feeling and I was immediately given prescriptions for both hydrocodone and morphine. The only other good part about that appointment was discovering that the pain wasn’t in my head. Hydrocodone and morphine provided a little relief, but the pain was still overwhelming.

Due to the precarious position of the tumor on my spine, we needed to undergo additional tests to verify. The first was and MRI. Thankfully, I’m not claustrophobic, but I hated how loud it was. I remember it being very unnerving and that we had to wait a long time. After the MRI, I needed to have a biopsy of the spot on my spine.

I’m not sure what type of sedative I was given, but I wasn’t supposed to feel the biopsy. I was, however, present and did feel it.  I hope others who must have this type of biopsy don’t feel it. The tests confirmed that I had a big fat tumor on my spine. Tumors on bones hurt like hell. They are assholes. The diagnosis also confirmed that it was a recurrence of cancer. My radiologist had been wrong, and my oncologist was right.