Tell us about yourself!
Alecia: I am originally from Mississippi but have lived in several states over the years. Most recently in Colorado before moving back to Alabama in December 2019 to be closer to family. I am a self-employed, independent consultant providing software implementation and compliance services to biotech and pharma companies in the preclinical, clinical, and manufacturing spaces. My background is in biochemistry, molecular biology, and bioinformatics, but more recently, I’ve embarked on a new path – working towards my life coach certification to align myself more directly with my passion and purpose of being of service to others. Seeing other people succeed and enjoying their lives to the fullest is what energizes me and makes me want to get out of bed in the morning.
About my cancer journey: After a suspicious routine mammogram in August 2020, I had a biopsy of a 2.2 cm lump in my right breast and sentinel lymph node, both of which came back malignant. I got the official news on September 30, 2020. My cancer was later classified as Stage IIB, ER+/PR+, HER2- breast cancer. Thus far, my treatment plan has included a lumpectomy with axillary lymph node dissection followed by a re-excision to get the all-important clear margins, 6.5 weeks of radiation, and a few attempts at trying to find a tolerable dosing regimen of Tamoxifen (targeted hormone receptor blocker therapy).
We heard you recently trained for and completed the Make-A-Wish Trailblaze Challenge (26.3 miles on Alabama’s Pinhoti Trail!) Congratulations! How was it preparing for that experience?
Make-A-Wish Alabama is an amazing organization with amazing people who lead this annual charity event. They organize and provide 12 weeks of training hikes on trails in the Birmingham and Huntsville areas with full support from experienced hike leaders and staff. In addition, the alumni hikers offer their experience and wisdom, offering all sorts of tips. I can’t say enough wonderful things about them all. Joining the hike is like joining a family.
In reality, though, my training wasn’t quite smooth. I actually signed up for the charity hike in January 2020, right after I moved here. Having just come from Colorado where I had found my love of hiking, this seemed like the perfect fit. I felt it would be a great way to start meeting people and building community, and I would be helping this organization raise money to achieve its mission of creating life-changing wishes for children with critical illnesses. The training hikes started in January to prepare us for the main event in May, but by March the pandemic was in full swing, and the hike was postponed until November. My friend and I continued to hike every weekend, as that was something still viable to do in pandemic times, to keep me motivated.
Fast-forward to my diagnosis in September 2020, I knew chances of me making the November hike were slim, and ultimately my first surgery was scheduled for hike weekend. When I notified the Make-A-Wish staff, I was still in the diagnostic phase, not yet knowing what type of breast cancer I had, how far it had spread, or what my full treatment plan would even look like. I explained I wouldn’t be able to keep my November commitment, but if at all possible, I wanted to stay on the list for the spring 2021 hike. They were incredibly understanding and supportive and honored my request to roll over to the following spring.
By January 2021, I was post-surgery and preparing to start my 6.5 weeks of radiation. I got my first notice for the 2021 Trailblaze Challenge training schedule that month. My radiation was to start on January 26. The first training hike was scheduled for January 30. I knew that staying active was recommended to help combat the fatigue, and while I knew there would be challenges, it just felt like the right thing for me to do. There were certainly ups and downs, but ultimately, I completed the training hikes, which grew from 4 miles on the first hike to 20 miles by the last hike, and then completed the full 26.3-mile hike in May on the Pinhoti. And of course, most importantly, I raised the money to meet my goal for the charity!
How did the hike help and/or complicate your cancer treatment & symptom management?
It definitely helped mentally. There were certainly physical challenges, but the mental and emotional benefits far outweighed those. The training didn’t just keep me active. The hike gave me a way to still be of service, have a positive focus outside of myself, and connect with nature. It provided healing moments of solitude while walking the trails for reflection, for sitting with and processing the myriad emotions and thoughts that come during cancer treatment. It gave me a way to feel of value, stay on purpose, and be of service to others at a time when I felt defeated and deflated.
Physically, training during the first four weeks of radiation wasn’t so bad, but at four weeks things started to get more difficult. Fatigue set in. I started experiencing radiation burns on my skin along with discomfort and inflammation in my shoulder joint. I remember the weekend of the 9-mile training hike very well. It was at the end of week five of treatment. I knew that at my slower pace it would take me 3.5-4 hours to complete, and I honestly didn’t know if I could tolerate the heat, sweat, and feel & friction of the material from my clothing on my skin for that long. I opted to stay at my apartment and simulate it as best I could on the treadmill. That way, if I had to stop, I could and just walk back up to my apartment rather than being in the middle of a trail on Oak Mountain. I made it through the full nine miles, varying the incline, but it was without a doubt the hardest training hike I did – way harder than the 20-mile training hike eight weeks later. I was fatigued, sore, and emotionally drained and considered stopping several times and, if I’m being honest, was on the verge of tears a time or two. But when I had that thought, I would think of the mission of Make-A-Wish and the children it supports. I thought of how the wishes that the kids receive give them something positive and joyful to focus on – how the wishes give them something to focus on other than their next treatment. It was amazing how that would inspire me – and give me something other than my treatment to focus on – and I’d keep putting one foot in front of the other. That thought pattern gave me purpose, which is what I needed at that moment.
There were safety things to consider. I had to be mindful of sun exposure on my radiated skin, keeping the area completely covered during and right after treatment and adding copious amounts of sunscreen once my skin was healed enough to apply it. Also, part of the training was planning for hydration over 26.3 miles of trails. I was not going to be able to tolerate the weight and position of a traditional hydration backpack, so I opted for a waist pack more traditionally used by cyclists. It was smaller, so I couldn’t carry as much water, but it worked well for my purpose.
Once radiation was finished, I expected everything to get easier with training and that I’d just get stronger with time. That was mostly accurate until I started the Tamoxifen. Within a few days, I began experiencing migraines. I stopped taking it for two weeks per doctor’s orders, then started back on a lower dose. All was well for about ten days, then new side effects started showing up the week of the big hike. I began having nausea that turned into complete loss of appetite, joint pain in my fingers and toes, night sweats, and crazy mood swings. My biggest concern was the loss of appetite, as how I ate and hydrated the 2-3 days prior to the hike would make a huge difference in performance. In my case, I wasn’t eating or drinking at all, so it wasn’t just about performance, it was would I even be able to start?
By Thursday of hike week, I was taken off the Tamoxifen again. By noon on Friday, I was able to start eating small bits. The hike started at the trailhead at 5:00 am on Saturday. The first ten miles were the most difficult as I started at about an eighth of a tank in terms of stored fuel. As I got further into the hike though and nibbled on fruit, trail mix, and other snacks along the way and at the aid stations, I started feeling stronger and somehow made it through. Again, in those moments where I was questioning my life choices, I thought of the kids and why I was there. I looked at the natural beauty that surrounded me. I looked at the other hikers in front of me and behind me who each had their own touching story of why they hiked. Then I put one foot in front of the other until 26.3 miles were behind me.
What advice do you have for someone taking on such a big challenge in the midst of a cancer diagnosis?
Of course, talk to your doctor first to make sure it’s safe. And, it doesn’t have to be a big challenge. It can be anything. Select a challenge or goal that is meaningful to you. The kind of meaningful that makes you stick with it on the hard days. Something that aligns with your purpose. A big lesson I learned was that purpose trumps positivity on the hard days. Platitudes fall flat and can feel invalidating with what you are going through. Action in line with purpose can be invigorating. And remember, “If you cannot do great things, do small things in a great way.” Napoleon Hill
After 26.3 miles, what’s next?
To be determined!
How did you get involved with Forge, and what have you enjoyed so far/are you looking forward to?
Thank goodness for Google! Forge has been critical in helping remove feelings of isolation and confusion (which I especially had in the beginning) and connect me with information and resources. I was diagnosed during peak pandemic when support resources were almost non-existent. All support groups I contacted were on hold or canceled due to COVID. Even appointments with medical professionals were strangely isolating. No one was allowed to accompany anyone to appointments, that is if appointments were even in person. My diagnosis was actually given to me over a Zoom meeting. Being new in town, I was pretty desperate to find others to talk to about what was happening. After three months of searching, I’m still not sure what magic keywords I finally used to get Forge as a top hit in my online search, but thankfully I found you! From the yoga classes to the Coffee Conversation presentations, to art classes, to support meetings, there are so many ways to engage. Navigating a cancer diagnosis can be so disorienting and overwhelming. I recommend Forge to help partner with anyone through that.