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Common Climber interviews WeighMyRack founder Alison Dennis about her experience with brain cancer and climbing's role in her recovery. Alison was diagnosed with brain cancer in September 2020 and wrote the following words in her blog. We have included her blog entries because they do the best at providing the background information about Alison's condition. The interview begins following the blog entries.
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Blog Post 1 - The Tumor
By Alison Dennis
August 30, 2021
https://blog.weighmyrack.com/a-hiatus-why-no-new-content-for-a-few-months/
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I have an inoperable cancerous brain stem tumor (it’s called a midline glioma which means it's in the center of my body and the structure is soft and infiltrating, like a sponge, versus a hard tumor mass). This tumor is extremely rare in adults, likely there are fewer than 50 adults diagnosed with it per year. This diagnosis is more common in children, but with very sad results – it’s almost always fatal within 3 years. Adults seem to have slightly better outcomes, perhaps because the brain is more developed.
Since this tumor is so rare in adults there are no quality statistics for life expectancy or life quality. The brain stem is what controls all the subconscious processes, like breathing, swallowing, your arm moving without you consciously telling it how to move, etc. Since my tumor is in the center of the brain stem, surgery is not an option because there is no way to get to it without harming important neural paths that control essential life tasks. Similarly, it’s impossible to safely get a biopsy of the tumor, to see if there is a specific chemo/immunotherapy match that would be particularly effective treatment. My doctors are the co-directors of the Alvord Brain Tumor Center at the University of Washington Medical Center and they have been great. I have utmost confidence in them. In October/November I went through a 6-week treatment of daily radiation and daily chemo pills. I will not have radiation again unless they find cancer elsewhere in the body (metastasis). At this point I am not on chemo. Part of the reason for no chemo is because the tumor has reacted well to my first treatment, and it’s possible that further chemo could cause more harm than good. The inability to biopsy the tumor to identify an ideal chemo treatment increases the risks and reduces the chances of it being effective. How did you know / what are the symptoms? (from Alison's blog)
As early as November 2019, Andreas noticed that while running I often held my left arm a little differently than the right arm. This difference was not notable other than a discrepancy in my running form. Even in retrospect I wouldn’t have said anything was wrong with my arm, it’s just now we can see this as likely being associated with the tumor. In July 2020 I lost confidence swallowing. I didn’t do it wrong and it wasn’t a hazard, swallowing just became a more conscious process. I didn’t bother seeing a doctor because it didn’t seem like a danger, and I didn’t want to risk a COVID exposure. Throughout the month of September I experienced an increased amount of seemingly unrelated but increasingly serious symptoms. When you read the list it will sounds like a lot. These symptoms appeared over time, sometimes went away for a bit, and/or were fairly easy to justify when it was just one symptom or two at a time. By the end of the month it was very clear something serious was going on. |
WeighMyRack founder Alison Dennis reading Chris Kalman's book "As Above, So Below" while waiting in an emergency room in Salt Lake City for results from a CT scan and MRI. (Photo Credit: Andreas Unterschuetz)
The original MRI that helped diagnose Alison's tumor. The tumor is the round, white formation in the brainstem.
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At first, it was limited motion and strength in my left arm (I assumed a pinched nerve from mountain biking). Then it was weakness in my left leg – eventually I had a small but ever present limp. Then tingling in my left fingers. Then tingling in my right fingers. At its worst, during hot showers, my nose and mouth began to tingle. It seemed like the left side of my face was slightly less responsive.
I had acid reflux multiple times after dinner, for the first time in my life.
My speech pattern was decreasing. I was slurring d’s, t’s, and s’s. Sometimes, it would sound like I was crying when I was speaking normally (the air would come out my nose instead of my mouth). There were 3 occasions during dinner were I found it hard to start the swallow of big bites of food. It felt like the back of my tongue was swollen although it was not actually bigger (apparently this is a classic neurological symptom).
At one point I thought maybe I had survived a stroke, since it was only one side of my body that was particularly off. The doctors at the Emergency Room in Salt Lake City all assumed I had some form of MS until they found the brain tumor via MRI, which explained all the symptoms.
It turns out this sudden increase in symptoms was due to the fact that my tumor had hemorrhaged. The hemorrhage expanded the tumor volume and the exposed blood all took up more room in my brain stem and limited my neural pathways. My tumor is ever so slightly more on the right side, thus why the left side of my body was more effected.
The hemorrhage was what caused the more pronounced increase in symptoms, which ultimately led to going to the ER, but it also means the cancer had advanced to a stage where it was making its own blood vessels and growing fast.
The on-call neurosurgeon in Salt Lake City said the doctors there could do surgery, but he recommended going to Seattle. It took 2 days for us to drive from Salt Lake City to Seattle, where there exists a world renown brain tumor center and our support network was strongest. During the drive my partner, Andreas, and I were both under the impression that I would be getting brain surgery as soon as possible, based on the information we were given in SLC.
My symptoms continued to increase. Driving to Seattle my left hand open hand grip was so weak I couldn’t turn the A/C dial in car. Usually we listen to podcasts or the radio or an audiobook during long drives. This time nothing came through the speakers and we didn’t even notice. In my head flowed thoughts that I wanted to live long enough to vote in the November election. I was also concerned that WeighMyRack wasn’t in a spot that could easily be taken over by Andreas or somebody else.
I had acid reflux multiple times after dinner, for the first time in my life.
My speech pattern was decreasing. I was slurring d’s, t’s, and s’s. Sometimes, it would sound like I was crying when I was speaking normally (the air would come out my nose instead of my mouth). There were 3 occasions during dinner were I found it hard to start the swallow of big bites of food. It felt like the back of my tongue was swollen although it was not actually bigger (apparently this is a classic neurological symptom).
At one point I thought maybe I had survived a stroke, since it was only one side of my body that was particularly off. The doctors at the Emergency Room in Salt Lake City all assumed I had some form of MS until they found the brain tumor via MRI, which explained all the symptoms.
It turns out this sudden increase in symptoms was due to the fact that my tumor had hemorrhaged. The hemorrhage expanded the tumor volume and the exposed blood all took up more room in my brain stem and limited my neural pathways. My tumor is ever so slightly more on the right side, thus why the left side of my body was more effected.
The hemorrhage was what caused the more pronounced increase in symptoms, which ultimately led to going to the ER, but it also means the cancer had advanced to a stage where it was making its own blood vessels and growing fast.
The on-call neurosurgeon in Salt Lake City said the doctors there could do surgery, but he recommended going to Seattle. It took 2 days for us to drive from Salt Lake City to Seattle, where there exists a world renown brain tumor center and our support network was strongest. During the drive my partner, Andreas, and I were both under the impression that I would be getting brain surgery as soon as possible, based on the information we were given in SLC.
My symptoms continued to increase. Driving to Seattle my left hand open hand grip was so weak I couldn’t turn the A/C dial in car. Usually we listen to podcasts or the radio or an audiobook during long drives. This time nothing came through the speakers and we didn’t even notice. In my head flowed thoughts that I wanted to live long enough to vote in the November election. I was also concerned that WeighMyRack wasn’t in a spot that could easily be taken over by Andreas or somebody else.
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At this point I could no longer put on my clothes easily by myself. I couldn’t take off my shirt or unclasp my bra because my left arm/hand was so weak. Buttons took me a frustratingly long time to manage. I would often tip over while trying to put on my pants or socks in the morning.
We entered the University of Washington Emergency Room on a Saturday morning and were seen by many on-call neuro doctors but none of them gave particularly hopeful diagnoses. Most started their introductions with, “I’m so sorry…”. On Monday, 5 days after my first diagnosis at the SLC ER, I was meeting with my new neuro-oncology and nuero-radiology doctors. That morning was the first time I saw double vision. Since treatment, some of my symptoms have gone away. I no longer have any tingling body parts. Some of my symptoms have decreased. It is unusual for me to see double vision. I am still unsure of the path that I am on, but fortunately, things are better than all the doctors feared as the worst. |
Alison getting fitted for her radiology mask as part of her radiation treatment at the University of Washington. (Photo Credit: University of Washington Radiology)
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Blog Post 2 - Alison's Brain Tumor Update
By Alison Dennis
September 9, 2021
https://blog.weighmyrack.com/cancer-update/
Hope is on the horizon for WeighMyRack’s Founder. After receiving radiation and chemo treatment at the University of Washington’s Alvord Brain Tumor Center, things have been improving. I (Alison) will have my tumor forever due to the inoperable location, but the tumor cells do not show any replication signals. My neuro-oncologist has given me permission to use the word “remission.”
I am not actively receiving any treatment and there are no future plans for treatment, unless additional cancer cells are detected (a recurrence). I will have an MRI to check in on the ol’ noggin in Nov, 2021, and about every 6 months after that for at least 5 years.
My brain doctors are nearly giddy while listening to what I’ve been up to physically, and comparing that with my status less than a year ago when I had minimal use of the left side of my body.
I am not actively receiving any treatment and there are no future plans for treatment, unless additional cancer cells are detected (a recurrence). I will have an MRI to check in on the ol’ noggin in Nov, 2021, and about every 6 months after that for at least 5 years.
My brain doctors are nearly giddy while listening to what I’ve been up to physically, and comparing that with my status less than a year ago when I had minimal use of the left side of my body.
Common Climber Interview
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In your blog you describe the variety of outdoor activities you have participated in recently, such as cross-country skiing, a 12-mile hike, a 35-mile cross country navigation race, a 20+ mile backpacking trip in the Uintas. You also went climbing. What was it like for you getting back on the rock both emotionally and physically?
I had really low expectations so those adventures ended up being a positive boost mentally. I went into the adventures doubting my physical capabilities but also knowing that I could always turn around or stop, so they felt low risk. I’m blown away by some of the progress (even if it’s all slower, more wobbly, and needing recovery days). It’s also been a boost to blow my doctors minds; they view me as a bit of an enigma. 
Remote Wyoming packrafting trip two months before ER visit (Photo Credit: Landon Blanchard)
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Pre-Tumor trail run in Arizona (Photo Credit: Andreas Unterschuetz)
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What kind of adaptations are you making for your climbing?
Almost all my climbing now has been top-roping or following. It feels extra supportive to have my partners lead the climbs and not put pressure on me to lead until I’m ready. My pack is also very light these days. Andreas has been carrying 80% of the gear, which has helped my stamina. In my head I mentally prepare for about three pitches before I expect to tire out. I’ve had some longer days (and some shorter days) but my short-term goals are more to just get outside and be stoked that I can physically get to these semi-remote places. You engage in many different outdoor activities, where did rock climbing fit into your life pre-tumor and where does it fit now?
Pre-tumor I was starting to mountain bike more than climb which was mostly a coincidence of COVID and not wanting to be near people. This summer I actually had more climbing days than any other sport. For the moment, walking is my main outdoor exercise, which I do daily. Has climbing or your perspectives on climbing changed for you? If so, how?
I feel like I have a more easy-going, excitable climbing vibe now. If I can’t climb a 5.8 that’s fine, no need to be bummed, I mean, I have a brain tumor!!!?!. If I struggle-bus up a 5.10 offwidth or start projecting a 5.12 it’s like, holy shit, what an incredible day! |
Alison climbing in Vedauwoo, Wyoming post-tumor (Photo Credit: Jeff Jaramillo)
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I am finding it hard to balance work and play. They used to be two separate energy buckets and now they are the same one. If I didn’t work at all, I would be out adventuring a lot more. I never expected to need a recovery day after climbing 3-5 pitches, but that’s a reality at the moment.
Did rock climbing help play a role in your recovery?
Yes, especially as my recovery continues. I held off for a bit at first because I didn’t want to experience a total shutdown on the wall and I didn’t want to climb indoors due to COVID. My first day back (six months after treatment) I top-roped a 5.7, 5.8, and 5.6. All were short climbs and the first climb I took at least three times. By the end of the last climb I couldn’t close my hand on the big holds and resorted to using my wrist in what I’ve since heard described as a meat hook technique. It reminded me of some of my first days climbing.
Watching my technique and strength progress since then has been uplifting. It’s definitely beyond what I expected was possible given my weakened left side and balance issues.
Yes, especially as my recovery continues. I held off for a bit at first because I didn’t want to experience a total shutdown on the wall and I didn’t want to climb indoors due to COVID. My first day back (six months after treatment) I top-roped a 5.7, 5.8, and 5.6. All were short climbs and the first climb I took at least three times. By the end of the last climb I couldn’t close my hand on the big holds and resorted to using my wrist in what I’ve since heard described as a meat hook technique. It reminded me of some of my first days climbing.
Watching my technique and strength progress since then has been uplifting. It’s definitely beyond what I expected was possible given my weakened left side and balance issues.
Alison climbing in El Potrero Chico, Mexico pre-tumor
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Swapping leads with partner Andreas in Potrero Chico pre-tumor (Photo Credit: Andreas Unterschuetz)
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You created the website WeighMyRack, which also has a large social media and YouTube following. Tell us about that journey.
When I started WeighMyRack, I was into startup culture and I thought it would just be an app that weighed your rack, and it’d sell it in the app store for $1. Then I thought that all the climbers I knew were lazy and wouldn’t want to type in all their gear and the weights, so I figured I should catalog it - that way there would be dropdown menus and it would be fast. At that time I had no idea how much gear there was to catalog - I wasn’t in the outdoor industry side of things at all. Once I saw how much gear was really out there I realized the bigger problem wasn’t which gear to take to lower your pack weight, it was really how to find the right gear to buy in the first place. So the whole idea shifted to finding the right gear. Although it does still drive me nuts that we don’t properly weigh individual racks yet. About seven years ago, before it felt like anybody knew who WeighMyRack was, we met Tommy Caldwell and he already knew WeighMyRack because Josh Warton had told him about it. Our minds were blown. Today, it’s still so fun meeting WeighMyRack fans. We just bought a house and the neighbor across the street follows WeighMyRack. Now when we go to the crag, inevitably we meet somebody who is stoked on some aspect WeighMyRack (the main site, our Instagram, or YouTube, or blog content). I never envisioned WeighMyRack being such a ubiquitous entity. |
The WeighMyRack website
The WeighMyRack website
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What is your current role in WeighMyRack and what do you envision for its future?
I am the captain of the ship and the wind in the sails. Fortunately there is an incredible team (Adnan, Jeff, Andreas, Denis, and Shariar) that keeps us afloat and sailing ahead! In the future I envision the coolest search bar ever, actually weighing individual racks, having all climbing gear plus camping gear, tons of blog content, official membership, classes and education, merchandise, plus more and more collaborations. The list is endless! Have you learned any lessons from your experience with WeighMyRack?
So many and still learning. Some standouts: start now, ask for help, find mentors, don’t worry about what others think, it doesn’t have to be perfect the first time (there is always time to iterate). |
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What does a "day-in-the-life" of Alison Dennis look like?
No day in a week looks like another. One of the only things that stays the same is that I’m always thinking about WeighMyRack. Oh, and I now drink two cups of caffeinated tea each day.
No day in a week looks like another. One of the only things that stays the same is that I’m always thinking about WeighMyRack. Oh, and I now drink two cups of caffeinated tea each day.
Kayaking in Lake Michigan post-tumor. (Photo Credit: Jessi Smith)
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If other climbers are facing a major illness, do you have any advice to share?
What I found helpful: Take stock of what gives energy and what takes energy. Do more of what gives you energy and try as hard as possible not to feel bad about not doing the things that take energy. Think of resting as “active recovery.” What is next for you? Do you have any specific climbing or life goals?
Andreas and I just bought a house in Laramie, WY, so I’m excited to get into off-width climbing at Vedauwoo! Particularly because of cancer I told Andreas that I want to, “go on four lifetime adventures” each year. |
Alison in Val di Mello, Italy pretumor (Photo Credit: Andreas Unterschuetz)
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Any last words or closing thoughts?
I am always stoked to collaborate, so please reach out. I am also shitty at responding to emails, so if I don’t respond it's likely I didn’t see your email (lost in the chaos), or I am thinking about a long response and haven’t had the time or energy to type it yet. Please email me again to get back on my direct radar.
I am always stoked to collaborate, so please reach out. I am also shitty at responding to emails, so if I don’t respond it's likely I didn’t see your email (lost in the chaos), or I am thinking about a long response and haven’t had the time or energy to type it yet. Please email me again to get back on my direct radar.
Alison and Andreas in El Potrero Chico, Mexico