Jessie Daw

Myeloma Family of Warriors
Tuesday, May 08
About 24 hours past reaching the top of the canyon on day 3, we’re still at a loss for words to describe the adventure. Amazing, awesome, epic, fantastic—they don’t seem to do it justice.

On day 1, we all met each other in Las Vegas and loaded in the van for the drive to our first night’s lodging at a motel about 60 miles from our trailhead. We had a BBQ dinner around fire and got to learn a little about everyone. We heard everyone’s myeloma story, and the magnitude of the impact from it was palpable. There was an unspoken understanding, it seems, regarding common experiences with this rare cancer. We had a lot of laughs getting to know one another, and the overall mood of the group was a mix between excitement, nervousness and anticipation. While all that was shared had lots of meaning, a few things stood out. One was Megan’s amazing commitment to MMRF fundraising. After her mom was diagnosed, she participated in a 5k, without much of a running past. Since then, she has raised over $100,000 for the MMRF! Jamie poignantly shared that she wanted to show her kids that despite myeloma, she is still strong. And John, one of our photographers who has been on other Moving Mountains treks, shared that this experience is not really about the destination, instead it’s about a state of mind. All of the stories really helped set the stage for our team.

On day 2, we woke up early to head to our trailhead. The hike down was a challenge, with the first 1.5 to 2 miles consisting of the canyon wall. After that, the trail leveled out and we had a gradual decline for the next 6 miles to Supaivillage. During this hiking time, we gained a greater familiarity with our teammates, as well as our fair share of blisters.

After the village, we had about 2 more miles to the campground entrance. Before that, though, we came to our first waterfall, Havasu Falls. We were stunned by the beauty, and shared hugs of excitement! Once again, words to describe this don’t seem adequate; and frankly, neither do pictures. We took off boots and enjoyed the water pools before heading on to set up camp. We also moved from familiarity to friendship, and our team grew closer.

On Friday, we took a hiking tour of other waterfalls located below the campground. We first came to the top of Mooney Falls, and then took on a challenging descent to the bottom, using "chain ropes" and ladders to descend down the side of the very high cliff. Many of us overcame fears, and with encouragement coursing through the team, we all made it! The joy, elation, and support were incredible! And through our conquering, we became closer as a team! It was truly amazing! We also hiked further down the canyon to Beaver Falls, where we spent time swimming and hanging out. It was a cold refreshing dip and we surfed the currents for a while. After that, we headed back to Mooney for some lunch and hang out time, before heading back up the cliff side via chains and ladders, more fears conquered. The late afternoon and evening were spent prepping for our most challenging day: Saturday—an 8-mile hike to the base of the canyon wall, and then the accent up on what was expected to be our hottest day, with temps in the 90s anticipated. Our physical and mental challenges of the day, along with our anticipation and planning for the hike out brought us even closer; we became a myeloma family that day — one that we are proud to be a part of! 

We woke at 2:30 A.M. to begin packing up and left at 4:30 A.M. Ben, our lead guide, was adamant about getting us up to the base of the wall as early as possible, given the heat. We pushed our pace, with stops only as needed for bathroom breaks. All snacks and water were taken on the move. The team was focused and kept a pretty strong pace from the village to the base of the wall. Our original plan was lunch at the base, but to maximize any remaining shade on the wall, we kept moving. This part is where the true grit of everyone was revealed. The ascent was difficult in rapidly increasing temperatures. We pushed, and pushed and pushed. Upon reaching the top, more than 2,000 feet of elevation climbed, I realized that not only were we a myeloma family, but we were a myeloma family of warriors!

For both of us, this trip was significant. For Jessie, as someone with smoldering myeloma, this provided an opportunity to meet and connect with others who have myeloma and share stories and ask questions. I’ve often felt alone in this journey since diagnosis, because with smoldering multiple myeloma, it often seems I’m in limbo land. I have a cancer diagnosis, but in a watch-and-wait situation. It’s a really weird place to be and having conversations with the two others with my disease was so valuable. Also, learning more about what the MMRF is doing was both exciting and comforting. Finally, having my sister Sarah along was really, really good for us. There was an added richness to everything, as Sarah was there for me at many turns on this hike. It was truly amazing!

Note from Sarah: I appreciated immensely the chance to hear other’s stories, and gain a better understanding of this disease. The complexities of myeloma create a variety of challenges, and hearing about everyone’s similarities and differences. This challenging hike showcased our endurance by overcoming obstacles with positive mind over matter. Jessie and everyone else being so encouraging and supportive. Deep appreciation to everyone on the trek. Lastly, I don’t think we could have asked for better guides (Ben, Josh and Dana) who kept us safe. Also, thank you to Amgen, who sent along Chris Seal to join the team.  Knowing that pharma companies want to hear from patients and walk in their path (literally) was incredible. 

Life changing moment for me and thank you MMRF and MM4MM for this enriching experience.
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