Monday, July 25, 2016

12 Things Only a Survivor Can Tell You About Cancer

Interesting and fairly accurate short read....

Moving Mountains for Multiple Myeloma

Moving Mountains for Multiple Myeloma, (MM4MM), is a collaboration between CURE Media Group, Takeda Oncology and the Multiple Myeloma Research Foundation (MMRF) to raise awareness and funds for myeloma research.

Patients, caregivers, myeloma doctors and nurses and myeloma loved ones take on challenging mountains – Mount Kilimanjaro, the Grand Canyon and Peru’s Machu Picchu – to demonstrate that the advancements being made in recent years, funded and spearheaded by the MMRF, are helping patients live longer with a higher quality of life than ever before.

In January 2016, a team of 15 MMRF supporters, which included four myeloma patients and a myeloma doctor, climbed Mount Kilimanjaro, the highest free standing mountain in the world. This team raised close to $250,000, with all proceeds going to the MMRF to accelerate research for next generation treatments.

On May 12, 2016, a team of 13 hikers took on the challenging Bright Angel Trail in the Southern Rim of the Grand Canyon. Three myeloma patients, a nurse who treats myeloma patients, caregivers and others who are directly connected to myeloma made up the team.

Beginning August 9, 2016, a team of 22 will begin their journey to Peru’s incredible Machu Picchu, via the Inca Trail. This trek will include four myeloma patients, a myeloma doctor, and four myeloma nurses, in addition to loved ones who climb to honor a patient who is living or who has lost their battle with this difficult disease.

Multiple myeloma is an incurable cancer of the blood that carries only a 46.6 percent chance of survival beyond five years, according to the National Cancer Institute. While great progress has been made in recent years to develop novel treatments, continued research funding is needed to get to the ultimate goal: a cure.

“There is nothing more powerful than working together with multiple myeloma patients, doctors and nurses, caregivers and partners like Takeda Oncology and CURE toward a common goal,” says Alicia O’Neill, a climber for the MM4MM program and an MMRF executive. “Pushing beyond perceived limits, working together with our dedicated partners, moving into action to demonstrate — through our physical feats — that we can be a source of funding and of inspiration is at the core of why we are climbing.”

When those touched by myeloma see patients taking on these incredible feats, we hope that they are inspired. While not every patient can dream of summiting the 19,341-foot peak in Africa, we hope our efforts and accomplishments serve as inspiration that we are stronger than we know and can be a positive part of the work that is being done to extend lives as we get closer to a cure.

Kilimanjaro climber and multiple myeloma patient Bod Dickey, of Shell Beach, California, says, “For me, Mount Kilimanjaro was validation that multiple myeloma is not the end. The climb illustrates to patients and caregivers that multiple myeloma offers us an opportunity, if not a requirement, to press harder.”

Takeda Oncology and CURE are proud supporters of the Moving Mountains for Multiple Myeloma Program.

Here is a video of the recent Grand Canyon hike. So powerful and moving.

Monday, July 18, 2016

Does Incurable Mean Terminal?

Hell if I know. I read the below article in the LA Times today. It reminded me of how when I was diagnosed, so many people and loved ones visited me and sent their prayers and wishes. I think we all thought, and that includes me, that I wasn't going to be around long. Looking back on that first year, it's quite surreal. So much I don't remember. Recently friends mentioned coming to see me at my house. I have no memory of that.

Now five years later I'm still kicking. As I mentioned, the Colorado training with my Kilimanjaro team was truly life affirming and life changing. Been thinking a lot about how I use the affirmation and change going forward. I'm not sure.

Anyhow, here's a short op-ed to read.

Thursday, July 14, 2016

27 heartwarming pics of a man taking his dog on a farewell trip

Courtesy of
Robert adopted Bella as a puppy. She's now 9 years old, or about 63 if you're counting in human years. 

In May, a veterinarian told Robert that what he initially thought was a shoulder injury was actually cancer and that it had spread to Bella's lungs. The doctor had to amputate one of Bella's legs and told Robert she had three to six months to live.
That was 14 months ago.

Determined to show Bella the same kind of unconditional love she had shown him throughout her life, Robert hit the road to give her the farewell tour of her doggie dreams.
As for Bella, he says, "She teaches me lessons every day, and I am so blessed to spend my time with her."

Monday, July 11, 2016

Mt Bierstadt conquered. Next up...Kilimanjaro

Perhaps conquered is too strong a word. Completed. Survived. Did it.

I'm back home from a quick trip to Colorado to meet my Kilimanjaro team and to train for Kili by hiking a 14er peak, Mt Bierstadt which stands at 14,060 feet. 16 people all instantly connected by a common goal. Team members are from across the country. I miss them already.

Including me there are 6 patients on the team. Terry from Alaska. Nancy from Sacramento. April from New York. Gary from South Carolina. Mark from Seattle. I shared a room with Mitch from Cincinnati who is climbing for his dad who has myeloma.

I arrived in Colorado Friday afternoon. Friday night I couldn't sleep. I was worried if I'd be able to complete the hike. I didn't know how I'd react to the altitude, I wondered if I was doing the right thing. Yes I'd been training. But I had chemo 3 days earlier, I'm getting older and I am generally always low on blood, which as we know is crucial for moving oxygen through the body.

Saturday we ate breakfast and went to the trail head. The hike started at 8 AM. The rocky peak of Bierstadt looked a million miles away.  We reached the summit as a team around 1:30. 6 miles of climbing. I made it. Arriving at the peak, the emotions flowed from all of the patients. We've gone through a lot. I was a crying mess.

I felt pretty good at the peak. No problems with the altitude, That's a very good thing. Kilimanjaro is 19,000 feet high. That's Bierstadt plus 5,000 feet. My legs will a little sore but I figured the downhill return hike would be a piece of cake. Nope. I was in the last group to finish, arriving back at the trail head at 6. 12 miles and 10 hours of hiking. I was exhausted. My legs were jelly. My feet were aching. But it was done and I did it. Wow. Sometimes I mentally block out that I am old and have cancer, and for a moment I was disappointed with myself that I got so beat up by the mountain. That's silly sure, but it's still a thought that crossed my mind.

 Stepping back though, I am super happy and extremely proud of myself. This is definitely a life altering event. Whereas before the hike, I had a bit of worry about going to Kilimanjaro, now I am nothing but excited. I know what training I need to do and I know I can do it. Guaranteed.

Sunday the team/new family ate breakfast together, exchanged phone numbers and headed back to our homes. On to Kilimanjaro. Thanks everyone for the support and motivation.

Thursday, July 7, 2016

Team Tracking

Moving Mountains for Multiple Myeloma and the MMRF have created a site to track our training progress this weekend.  Follow this link over the weekend if you want to see how we're doing, along with pictures of Saturday's 14,000 climb.

Wednesday, July 6, 2016

Mt Bierstadt, CO

Kilimanjaro training kicks up a notch this weekend. The team is traveling to Colorado to climb Mt Bierstadt, a 14,000 peak.  I feel like I'm in good shape. The two things have me an itsy bitsy worried are that I just started a new cycle of chemo yesterday. This means achy and sore muscles, without climbing a mountain. And, while my hemoglobin is ok and I don't need procrit this week, it's still a little low...hovering around 10. Normal is 13-15.

But I'm doing this! It's a good test. Yikes. No problem! Yikes.

And if you want to contribute to my Kilimanjaro climb/fund raiser, simply click on this link:

Matt Climbs Kilimanjaro to Raise Funds for the Multiple Myeloma Research Foundation

Friday, July 1, 2016

Monthly Berenson Visit

Everything good. Myeloma stable.  Stay the course. Pre-visit breakfast at Factor's deli on Pico in West LA. 

You're in my Chair

It's 3 AM as I write this. Earlier today I had my monthly darzalex infusion.  Five hours. The first 4 go by swiftly. I get a large benad...