2020 was a shocker of a year. Heading into the early months of February and March I was feeling dialed and ready to rip the enduro scene. I was fully committed to training & improving my skills over the winter. This excitement quickly turned to disappointment as news of the pandemic broke out and it’s ramifications became clear:
Racing Is Off The Table Until Further Notice
As disappointed as I was that races were being cancelled, there was a silver lining. My life had been raging at a break neck speed and the lockdown forced me to slow down, value my time more and de-value external demands. I spent a lot more time with my immediate family.
Just When I Was Getting Comfy…
As I settled into enjoying the break from the pressures of racing, training, coaching, & volunteering, life hooked a sharp left and I found myself held hostage at my local hospital – confused, scared, isolated. This was mid May. Here in NJ we were still deep in the initial Covid peak and a hospital was not where I wanted to be.
Riding Isn’t Just Pushed Aside, It’s Not Even On The Table
I’ll keep this part brief, but if you’d like the long-winded version of this experience, you can read it here. I woke up in the middle of the night with a severe stomach ache. I was in the hospital for about a week, where they removed a large cancerous tumor along with a foot and half of intestines from my abdomen. My world shifted so fast and so hard I felt completely dislocated from the ‘me’ that’s always been, I was utterly disoriented, bouncing between exhaustion, rest, stress and utter intense focus to educate myself about gastrointestinal stromal tumors.
There was a lot of doctor appointments. Follow up scans. Bloodwork. Second and third opinions. There was a lot of worry. If you’d like to read more about my recovery and dealing with a cancer diagnosis, that’s here. There were hours and hours of discussions with family and friends hashing out every single detail of every document, every report and every appointment. Each doctor visit or call was its own roller coaster of emotion. Every time I thought I had things figured out, I’d be shocked by some new piece of information or new understanding.
The Slow Road Back to Two Wheels
I had 6 weeks of rest waiting for my intestines and abdominal muscles to heal. Unlike any other injury I’d had, the recovery was not a smooth path. Intestines’ are a fickle thing, and it’s not obvious what their status is. I came a hair’s breath from having another surgery.
I approached recovery like any other goal – clarify the big-picture, figure out the steps to get there, focus on 1 step at a time, celebrate small achievements & accept that this would be a lengthy journey.
I eased back into activity with my dog Odin. As the weeks went by I started seeing gains. I went from not being able to walk around my block without stopping to rest, to jogging 5 miles. I started hiking and eventually made my way back on the bike. I implemented a home physical therapy routine for my abs & incision scar and eventually got back between the tape, winning an enduro at Glen Park, before 2020 came to a close.
Along side this recovery I was dealing with an undercurrent of anxiety and the lingering side effects from the chemo drug I’ll be on for the next 3 years – but it’s all manageable. One thing I learned to do over the last 12 months is to take a day – when that emotional turmoil boils up to the surface – take a day – or 2. Take whatever is needed. And here’s the key – there’s no need to feel guilty about it.
Heading into 2021, I’m Keeping My Options Open
I don’t have many expectations for 2021. In terms of cycling, I’m going to continue to improve my fitness, strength & skills on the bike. I’m planning on doing some racing – just not nearly as much as I used to. I’ve got a lot of things on my bucket list and plans to tick them off sooner rather than later.
Cancer-versary
May 16 marks 1 year from my tumor surgery. Last week I had the ‘1 year CT scan’. There is no evidence of any disease. My bloodwork indicates that my liver is handling the imatinib rx without any issues and I’ve graduated from seemingly constant oncology visits to a 3 month period before my next appointment.
Although all of this brings a feeling of relief, it doesn’t fully quell that underlying layer of anxiety – I’m not sure anything will.
In the meantime, I’m going to make the most of my time on and off the bike, because there is no time like the present.
The next couple weeks were focused on recovery and rest. My family took excellent care of me. I’m very careful with my diet – eating only soft foods, soups and lots of smoothies. Friends and family inundate me with flowers and get well cards and I catch up on a lot of movies.
I saw my surgeon in his office. He hinted at cancer but never made a direct statement. The biopsy was supposed to take 5 days, but this tumor isn’t common, so it had been shuffled to different labs for verification before final results were sent back to him. He is pleased with how the incision is healing and approves longer walks and light jogging.
When the surgeon finally calls with the results more than 14 days post-surgery, he tells me it’s a gastro-intestinal stromal tumor (GIST) and lets me know surgery was probably the only treatment needed. I take that to mean it was not cancer. He asks me to see an oncologist to confirm treatment.
I got a recommendation for a gastro-oncologist and head over thinking this is going to be a short and semi-pointless consult. I’m retelling my story, he’s reviewing the reports, and then he looks at me and says, ‘So it looks like your in remission…’ I immediately interrupt and say, ‘Wait, what? Remission? That’s a term you use when talking about cancer’. He can see plain as day I haven’t heard any direct statements, so he pauses and then he patiently restarts from the beginning.
He states that the tumor is cancer.
He defines the type (sarcoma) and explains various details, he answers all my questions until I’m just sitting in quiet disbelief. It’s not a short appointment. My husband is with me and is just as rattled as I feel. We head home and the anxiety floods in. What does this mean?
I dive into researching every last word on every report – the surgical report, the ct reports, the biopsy results. I get genetic testing done, I have a coloscopy & endoscopy, there are more biopsies sent out. I get second and third opinions. I talk to my family and friends. My sister works in a hospital setting and we discuss every last detail of every appointment, every opinion, and every report. She uses her access to scientific research to precure more information. I have more appointments with the oncologist.
Every time I felt like I reached a level of understanding or felt a sense of security with the situation, the next doctor appointment or scan result would rip that footing away and I’d be spinning in a sea of anxiety.
The worst one was a follow up CT scan they did to inspect my other organs for evidence of cancer. I had been told over and over again that there was no evidence that the cancer had metastasized – ie – it had not spread past the one tumor. This scan was simply part of the standard treatment routine. My tumor was medium risk based on how fast it had been growing, and it was stage 2. Stage 2 is good – that’s early – and you know what everyone says, when you catch it early, better outcomes.
The doctor called and told me they found a spot on my liver.
The liver and the lungs are the 2 organs that this type of cancer metastasizes to first. I’d learned that from the doctors and from the internet research I’d done. Now, he also said there’s not need to panic, it could be any number of things, but I’d need an MRI to better view it and determine if it’s part of the cancer.
For the majority of this experience, and up until this point, I had been able to keep a level of hopefulness and positivity going. This news, however, broke me. Suddenly, not seeing my kids graduate high school was a real possibility. I’d miss their birthdays, their milestones. I’d miss seeing them create their own families. Should I pre-write birthday cards for them, and how many? Would getting a birthday card from me after I’m dead make them feel loved or just create unnecessary heartache? The unfairness and randomness of it all was crushing and I absolutely lost it.
The good part of COVID is that with everyone hunkering down at home, I’m able to schedule appointments very quickly. I get the follow up MRI done a couple days later and the doctor calls with results that same day letting me know that the spot on my liver is not part of the cancer.
I’m elated… for the moment.
The roller-coaster of emotions wasn’t limited to just doctor calls, there’s the experience of telling my friends and family it’s cancer. As if this whole situation isn’t stressful enough, waiting for and dealing with their reaction is rough – everyone is initially shocked, which makes sense, but then many seem afraid – afraid of the word, afraid for me or afraid of me – sometimes all three. It’s surreal.
With most people though, we are able to get past that initial awkwardness and get to a real discussion. Talking about it helps me process what’s happening, it helps me solidify my understanding, so I talk a lot.
I’ve never experienced this level of emotional turmoil – the ups & downs were drastic in the first couple months post surgery and I’d have days where I just had to shut off – I couldn’t focus on work for any length of time or accomplish simple household chores. It was just sit in the backyard, toss a ball for my dog or sleep.
I am so grateful to have such incredible people – family & friends – in my life helping me get through all of this. My husband Jason, my sister Debbie – I would have been a disaster without them.
I’m a year out now, and am back to life-as-normal, but there is an undertone of anxiety that lingers. Once in a while it’ll rear back up – a doctors appointment or periodic scan for example. It’s always there, nagging quietly in the back of my mind. I’ve spoken to a lot of cancer survivors who have a similar experience – the anxiety never leaves, but it does fade into the background.
I try and use it as a reminder to appreciate what I have right now and to take action on my bucket list items rather than wait. And if I need a day to tune out, I take it.
Meanwhile, I’m frustrated by how long soft tissue takes to heal.
Some days were good, some days were not. I had to be careful with what I ate, and once in a while my intestines would act up. At one point, about a month after a my surgery, I got that “backed up” stomach ache that started this whole fiasco – it felt like another intestinal blockage.
Off to the urgent care I went for yet another CT scan. They found that my intestines’ were indeed blocked again. The intestines appeared ‘flattened and closed’ at the surgery spot. They could see swelling before the surgery point and deflation after that point – like a balloon pinched closed between your fingers. Sometimes the scar tissue can stick to itself they told me, causing this type of blockage.
They transferred me to the hospital. I did not want to be here. I did not want to go through this again.
My surgeon looked at the films and had everyone wait. Sometimes, he said, if the scar tissue isn’t healed together, this type of blockage can sort itself out with hydration and laxatives. The pain had receded so that was a good sign. They pumped me full of fluids and after a few more hours passed the surgeon stopped by to poke and prod my abdomen. He determined that the blockage had indeed cleared on it’s own and I sent home without any other treatments.
As the days and weeks pass without any other complications, my desire to become more active, specifically to ride my bike, kicked in.
When can I start riding again?
I walked everyday – after most meals, especially if I had any odd stomach aches or pains. I worked up from struggling to get around my neighborhood block without stopping to a few steady miles. My dog is super energetic and strong, so I spent the early weeks diligently training him to not pull or chase squirrels on our walks. The surgeon was very clear that I had to be careful not to lift or strain while my abdomen healed. There was a lot of freshly boiled chicken involved. We slowly progressed to jogging and I rekindled an long-passed passion for running. After what felt like an eternity I was able to return to riding.
I was happy to be on two wheels, but my body was not right and the idea of training or racing seemed very distant. Despite this, I stayed positive, and approached recovery like any other goal:
clarify the big-picture,
figure out the steps to get there,
focus on 1 step at a time,
celebrate small achievements &
accept that this would be a lengthy journey.
I’d ride a few miles feeling great and then my back wheel would slip on gravel or wet rocks and it would feel like I sprained my abs. I avoided riding in any wet conditions whatsoever, and had to avoid technical trails and features (my favorite stuff). I bridged this weakness by getting my dog Odin a sled harness and bungee leash so he could do the pulling when conditions were less than ideal. I also started a home physical therapy routine targeting my abs and cupping for the scar tissue.
Part of my cancer treatment is taking imatinib (gleevec) for at least 3 years.
It’s a chemotherapy drug that has minimal side-effects relative to what you’d normally think of when someone say’s “chemo”. The side effects were stronger initially – nausea, upset stomach, fatigue, flu-like symptoms & muscle cramps – but I’ve adjusted to the medicine and can deal with the lingering issues that pop up – I go to bed earlier or take an afternoon nap, I take magnesium and electrolytes for the muscle cramps and I have an anti-nausea med to combat any upset stomach.
Returning to Glen Park
In the back of my mind this whole time I’m weighing whether or not returning to racing is a reasonable expectation. I find true happiness on my mountain bike – that feeling of flying through the woods – I love it. I also find great joy in the process of setting, pursing and achieving goals – racing gave me a clear set of targets, but I don’t necessarily need to race to find contentment, so I decide that I’d be okay with not racing anymore if my body just can’t take it.
As the fall of 2020 rolls in, an enduro at Glen Park opens registration. I love Glen Park! But I am pretty far from anything that looks like ‘race shape’. What the hell – it’s a day on my bike at a place I love seeing people I like – that’s more than enough to convince me to sign up.
My teammates & I head to the park the weekend before the race to get some extra time in on the trails. That double that scares the crap out of me? What do I have to lose by going for it? Today, I’m feeling good, tomorrow, I might not. Let’s not wait another day. I clear it.
The following weekend the race is hard, but it’s an epic day. I’m exhausted by the back to back riding – pre-ride & race day. Between the meds & my poor fitness, recovery is harder than ever, the muscles cramps are vicious at night after a hard day workout, but I’m so happy to be out there, that none of that matters.
By the end of the day I find myself standing on the top step of the podium and I’m pretty emotional. I can see a path back to racing – this chapter doesn’t have to close just yet – which is good because I’ve got a few bucket list items to knock off my list first.
Mid May, I woke up in the middle of the night with a severe stomach ache. By morning I was in absolute agony. My husband dropped me off at the nearest hospital (Covid rules = no visitors allowed). This first day seemed to go by pretty swiftly, the doctors saw me right away and scheduled an abdominal CT scan. Since I had to drink contrast fluid and wait for it to work through my intestines, there was a couple hours of waiting involved. The doctors had started an IV with pain meds, so I was feeling pretty good at this point – except for the Covid nasal swab – the early version where they had to swipe the back of the sinuses was eye-watering awful. As I waiting and starting to feel better, I remember thinking this is probably going to amount to nothing and I’m wasting everyone’s time.
When the results came back the ER doctor visited and let me know I had an intestinal obstruction and that I’d need to have it surgically removed. Her slightly enlarged eyes and barely concealed pity gave me an uneasy feeling. This feeling compounded when my questions were not answered directly or specifically.
“What’s causing the Obstruction?” “Could be any number of things…” “What will the surgeon be doing exactly?” “Depends on how he wants to handle the obstruction… He’ll be able to give you those details when he talks to you, let’s get you admitted”.
I like information. Clear, detailed information. I didn’t get any for days.
Hospital admission during a pandemic looks a bit different than any other hospital experience I’d had before. I had my own room. The doors were heavy, always closed and completely sound proof.
When I’d ring for a nurse, it would take anywhere from 1h to 3h for an actual person to visit my room.
When a nurse did appear, they often had difficulty managing their normal tasks due to ill fitting and excessive PPE gear. The staff fielding the ‘help desk’ calls never had any information. I was just sitting in a room, waiting.
Channeling Sarah Conner
On day two I was expecting more information but I really didn’t get much. I flipped between feeling incredibly uneasy, unsure of what was going on and utter boredom.
I hadn’t eaten anything since the night before I went to the ER and my stomach ache had completely disappeared. My body was back to feeling normal and it felt weird to be closed into a white, institutional room, far away from my husband, my kids and my mountain bike. I spent a lot of time on the phone talking to family and friends. When the attending doctor finally made a visit late in the day, he was shocked to find me knocking out pushups on the floor.
Various doctors came and went after his visit – a gastroenterologist, a pulmonologist. No one had much info for me. The obstruction could be a collection of debris like seeds, it could be a growth, it could be twisted intestines…
The obstruction was a tumor.
I can’t recall exactly when I saw the surgeon for the first time, but he was direct and clear.
The obstruction was a tumor, a large one – bigger than a baseball. I needed to stay in the hospital instead of waiting for my surgery appointment in the comfort of my home because the tumor could rupture – and that would be BAD.
Yes, this could be cancer, but that’s unlikely, and we won’t know anything for sure until the biopsy comes back. Yes, he does hundreds of these surgeries every year (removing a section of intestines and reconnecting), but not usually due to a tumor – those he only sees once a year. He’d be sewing the intestines up with titanium stitches that will forever be visible on future scans & x-rays.
Sunrise from my hospital room
It would have saved me a metric-ton of worry if any doctor had told me any portion of that information in the ER. But now I understood the ER doctors & nurses shocked look and undertones of pity.
A baseball? Jesus, how can that be?
At 5-8 and 134 lbs, how did I not notice a baseball in my abdomen?
Surgery was the next day.
My 9am appointment kept getting pushed back because the hospital was short staffed thanks to Covid. Eventually it was time. My anxiety peaked when the anesthesiologist asked if I had Crohn’s disease. Why would any medical professional ever make assumptions? “Uh, no. I have a tumor.”
Thank goodness the surgeon was equal parts commanding, confident and compassionate.
I was wheeled into the operating room, staff bustled around. The anesthesia quickly drifted me into sleep.
When I came to, the surgeon told me there were a few surprises, but that overall everything went smoothly. The tumor was encapsulated (good news), it had been attached to my bladder, but separated relatively easily. It was actually bigger than the scan indicated.
Once he separated it from my bladder it ‘sprang’ up high into my abdomen, so he could not create the main incision over my 15 year old horizontal c-section scar as we had initially discussed, but had to cut vertically from just below my belly button down to my pelvic bone – he would have like to have it even higher, but decided he could make this work. He likened the tumor removal to birthing a baby via c-section.
Groggy, post-surgery daze
He had initially thought it had grown out of my mesentery – the web of blood vessels that holds your organs in place – which would have made for a complicated surgery, but instead it sprouted from my jejunum (part of my intestines) which was easier to deal with surgically – he took a foot an a half of my intestines and 4 nearby lymph nodes which all got sent out along with the tumor tissue for biopsy. The tumor had been fed by it’s own 1cm diameter blood vessel that he sealed off. We expected to get the biopsy results back in 5-7 days…
OOF. That was a lot to process in a dissipating drug haze. But I got the message –
– the surgery went well.
At some point I found myself back in my isolated hospital room. My throat ached. I still wasn’t allowed to eat. I felt just as isolated there as I had pre-surgery. The IV in my arm had shifted and bent at some point and was creating a bloated, painful bulge. I called for assistance. 2 agonizing hours later a nurse moved the IV to my other arm.
The delay in nurse response time sent me into a panic when I had a reaction to one of the iv antibiotics in the middle of the night. A few minutes after administering Flagyl, my face flushed, my fingers became tingly and I had severe dizziness. I couldn’t catch my breath. I buzzed for help. It was over an hour before anyone entered my room. My husband called the attending doctor.
Much of the reaction had passed by the time the nurse arrived and she brushed off my concern – I didn’t know at the time it was caused by the antibiotic. She had the doctor prescribe me anti-anxiety meds. I don’t often ask for help, so when I do and I’m not believed, it’s pretty emotionally devastating. My panic turned into red-face anger. I refused to take them.
It’s just before midnight and apparently a bed “just opened up” on a Covid negative recovery floor, so they moved me. This was a much better experience – open doors, the constant soft sound of busy nurses and staff that were just an “excuse me” away.
Like all things in life, the move had it’s tradeoffs.
My roommate couldn’t get herself to the bathroom on her own and frequently relieved her chronic diarrhea at her bedside commode.
In the morning, when the nurse administered the iv antibiotic, the reaction was even faster. I called for help and she came right in – she could see the redness in my face, my shortness of breath, my dizziness. She knew right away what it was and what to do.
It was incredibly reassuring to be believed.
My abdomen hurt, my throat was still raw (from the intubation tube) but I felt cared for here. My IV got dislodged again and was causing my arm to swell painfully so they moved it to my hand. The rest of the day was filled with lots of visits from doctors and nurses inspecting my incision site. One of the sweet, friendly nurses made me a ‘hug’ pillow to hold when I moved, walked or slept.
I still hadn’t eaten anything. It was around 5 days at this point since I last ate solid food. Honestly, I wasn’t even hungry – hunger faded around day 3 and never reared up again. The doctor approved pureed, plain oatmeal and I diligently spooned it down with my usual meal of apple juice and chicken broth.
My focus turned to, “What do I need to do to go home?”
A breathing therapist (I have asthma) gave me a blow-tube and exercise instructions to use it for. The nurse asked me to start walking – walking as much as I felt up to. I took these challenges to be my ticket out, so the next day I was rolling my IV stand up and down the hallway & performing the breathing exercise every hour.
I had stopped taking IV pain meds when I had been moved – I’m not a huge fan, and I know the quicker you’re off that stuff, the quicker you can go home.
I graduated to plain oatmeal. When the attending doctor came in, all I could ask him about was what I needed to do to be discharged. He was pleased with the nurse’s report of my activity, but he informed me that I would need to have a bowel movement before I could leave.
Ummm. Say what? I haven’t eaten solid food for nearly a WEEK!
Madison’s Magical Money.
Side note, when my daughter was 2, she swallowed a penny. It took that penny 10 days to travel through her much shorter than an adult’s intestines before it exited her system.
How the hell long would it take for oatmeal to pass through my intestines?! This was not a timeline I was okay with.
By the end of the next day, my continued activity coupled with my powers of persuasion – it could take a week for a meal to pass through my system, my house is just a half mile away, my husband’s promise to return me to the hospital should anything cause concern, and – this is the winning ticket – flatulence, was enough to get approval to get the hell out of there.
Walking into my house never felt so amazing.
Getting picked up from the hospital was a hazy dream. I was so happy to be going home. It was so emotional to see and hug my husband, my kids, my dog. I settled into the couch and slept – truly restorative sleep. It felt like the chapter to this crazy experience was finally wrapping up.
