Speak Up!

Earlier this week, many of my Iowa friends from Above & Beyond Cancer joined the American Cancer Society at the Iowa State Capitol for a "Day of Advocacy". I want to thank all who went out for taking time out of their busy schedules to raise their voices for what they consider important. We're all busy people; it takes effort to do more than just sit at home and complain. That's why people - politicians, business owners, and non-profits - start to pay attention when enough people stand up.

And that leads me into a follow-up to my recent post on the loss of some of our online cancer community. It's really just a continuation to what I said about keeping up the work that Rachel, Susan, and so many others have done. This will also serve as my commentary on recent events and decisions in the cancer non-profit world.

Let's face it, money talks. Where you put your money matters. If you give your hard-earned money to an organization, make sure their priorities are similar to yours. If you don't agree with how they are spending money, don't give them any. Find an organization who's goals are more to your liking. But here's the thing - make sure they know why you've pulled your support! Call them, email, or write a letter.

If research is the most important thing to you, look for an organization that supports research. In spite of other great work, if an organization doesn't fund or stops funding research, don't give them your money if research is what you care about the most. If preventing cancer is an important issue for you, look for groups devoted to programs and research in that area. Or simply encourage friends and family to stop smoking and exercise - two of the best ways to reduce risk of cancer and many other health issues. Better yet, take someone you care about to the gym or on a walk; it will be good for both of you. If affordable screening and ongoing care is your priority, or patient support.... You get the idea.

All this information is available - or it should be. All you have to do is look. What percentage of donations go to programs that matter to you? If information is not readily available, that should be a red flag for you. Don't just look at the pretty, feel-good slogans. Do your homework. Think about what really matters and act on it.

The same is true for that other all-too-scarce commodity: your time. If you volunteer to raise money or show up for some function, make sure it's for something that is important. Don't show up for the car wash or walk just because it makes you feel like you're doing something. We all want to feel good, but if the group doesn't really support your priorities, don't waste your time. Spend your precious time helping some group that aligns more with your priorities.

Finally, you can influence programs and people by raising your voice. Stand up and say what you think. Tell the people running the organizations and businesses what matters to you. Encourage others to do the same. Stand up and tell your elected officials about your priorities.

With so many larger forces at work, it can feel like our voices are never heard. But if enough of us say it or shout it, I like to think we will be heard. It may be naive, but I still believe that if we stand together and say what we think, we can make a difference. It takes action and awareness. It's not enough to just give support to anyone saying they fight cancer. That's not good enough. They must tell us specifically how they fight or how they support survivors or how they prevent. And if they don't, don't support them. There are so many organizations doing good work; a little work on your part will lead you to the best one for your priorities.

Julie

Inspiration Is Everywhere

What (or who) inspires you?

I've been thinking about that question since I came back from my long run on Friday. I was coming out of the woods at the top of my street. My neighbor was just coming up the hill, finishing her walk with her dog. She and I had chatted a couple days before as she was walking her dog and I was running up and down our hill, doing hill repeats. We had talked about how nice it was to see someone else out enjoying the outdoors. When I told her on Friday that I was just finishing a 22-mile run in the woods, she shouted out that I was her inspiration.

And that got me thinking.

I actually find her an inspiration. She doesn't walk fast or particularly far, but she walks just about every day. I'm sure if she were asked, she would simply say the dog needs to go out. However, she has a large fenced in part of her yard, so the dog doesn't have to walk the hill. But every day she and her dog walk to the bottom of our hill and back up. Mind you, that's no small achievement - we have a long, steep hill. Cold, rain, sun...it doesn't matter. She walks the hill.

When I still lived in the city, there was a morbidly obese man who came to the pool at my gym. A lot of people would look at him like he was some freak, somehow terribly out of place at a gym. I imagine he must have been very self-conscious. But in spite of any discomfort, he came to the pool almost every day. He wore shorts and a huge T-shirt. He would lower himself into the shallow end and start walking.

On my recent Kilimanjaro climb with Above & Beyond Cancer I was inspired daily by my teammates. Often, I was most inspired by the slowest or weakest in our group. I marveled at their persistence. I gleefully watched as they would stumble into camp with the help of teammates, exhausted, but determined to continue another day.

I love the underdogs! I love the guys who overcome their fears, who persist in spite of every difficulty. Yes, strong trained athletes can be impressive, but it's the ordinary Joe overcoming obstacles that inspires me. It's the person who manages to lose and keep off 5 pounds by balancing healthier food choices with a bit more exercise. It's the one who runs his first race even though he knows he'll probably finish last - and then signs up for another race. It's the woman who walks to work. It's my neighbor.

Inspiration is everywhere if you stay open to it. Where does your inspiration come from?

Julie

A Few Sad Goodbyes

At the top of Kilimanjaro, we raised prayer flags and took part in a Relay for Life. We celebrated life and remembered those lost to cancer.

I had carried just one prayer flag up the mountain - for Chez. There are far too many I've known from my decade of survival who I did remember, but only one flag that I flew. Cheryl was on my mind as I flew to Africa; she had gone into hospice shortly before I left. I had said my goodbyes and knew it was unlikely she would greet the news of our summit.

Cheryl and I had met here, on this blog. She became a regular reader, emailed asking exercise advice, signed up for my Daily Tips, and in the process became my friend. I tried to help her figure out ways to retain some range of motion as her cancer spread, and to strengthen the muscles that were still functional in an effort to keep her mobility and independence. And for me she was a constant source of encouragement whenever I began to doubt if what I was trying to do mattered.

She was thoughtful and caring. She was always honest. I admired her grace in the face of great pain. She seemed to delight in the natural beauty that surrounded her.

I carried her in my pack as I climbed. I thought she would enjoy the view from the top of Africa, flying over the glacier. After our climb, she came on safari with me. I carried her each day as I ventured into the bush.

I miss her presence here and in my email box. I wish her family comfort and peace.

There were two more notable losses this week in the online breast cancer community. Rachel Cheetham Moro, of the Cancer Culture Chronicles; and Susan Niebur, @WhyMommy at Toddler Planet died yesterday. They were both strong, witty, outspoken and tireless advocates in the community. They argued for more research, better and more meaningful support for survivors, and more funding/attention/support for metastatic disease.

Why did they spend so much time writing and talking about metastatic disease? Because that's what kills us. Cancer in breast tissue doesn't kill us. Cancer that spreads from our breasts to other body parts does. And yet, a shockingly small amount of attention is given to METS by some of the larger and more powerful cancer organizations. A small percent of funding goes to research for met. disease, and yet that's what kills us.

Their voices will be greatly missed. But, as another blogger said earlier today, there will be others to take their place. Yes, sadly, that's true. There will be no shortage of new recruits to our ranks.

I think maybe the best tribute to them would be to continue their work.

If we believe that a larger portion of the money raised by any organization should be spent on research rather than yet another awareness campaign, we must demand it. If we believe an organization should pay attention not only to the nervous "newbies", but to our sisters living with METS, we must demand it. If we think cancer organizations should offer the kind of support that really matters to us - the survivors - and not just to their large corporate sponsors, we must demand it. If we believe that our elected officials can and should do more to ensure that everyone has access to good and timely care if something is discovered in a scan, we must demand it. 


We must demand it.


Rest in peace, ladies. I will miss you all. And peace to your families.

Julie

Kilimanjaro - Something Entirely Unexpected

Climbing imagery is awash with phrases like conquer, vanquish, or prevail, which I've never really understood. I've never really felt that way. I feel like I simply get to spend some time with the mountain, and for that time I am grateful. I don't beat the mountain if I summit, I just get the pleasure of a singular moment on that mountain when there is no place further to go.

We still had a tough couple of days to the summit. As I suspected, I was feeling somewhat better after a day of hiking - even a very long day of hiking. The meds were kicking in; I was throwing up less often, which is always a good thing.

First up, we had to climb the Baranco wall, about 1000 feet of scrambly climbing. We fall in the long line of people zigzagging up the wall. Once up, we have to drop back down into the next drainage and up the other side. This day is a nightmare for one of our group, with his intense fear of heights. This day is one long panic attack for him. But with a lot of help he stays focused on the task in front of him - the next step. His crazy perseverance in the face of his overwhelming fear is inspiring.

The next day is no easier, just different. It's steep, but over rough,
dusty trail or scree. We all grow weary of seeing grey rocks and grey
dust. We have so many false hopes - is that crest the top? - no, there is still more up. There is always more up.

Even though I still stop periodically to puke - dry-heaving now - I enjoy these two days. The scramble, the steepness - this is more like climbing a mountain to me. It's been a few years since I've been on a big mountain; this reminds me of why I love climbing. I'm tired, but I'm happy.

Stella Point - there is no more up for today. We have reached the summit rim. Most climbers head immediately up to Uhuru Peak, the highest point on the rim, and then descend. We have different plans. We will spend the night in the crater, at the base of the glacier. We will light luminaria, and in the morning raise prayer flags and take part in the highest-ever Relay for Life. Then we will climb the final hour to Uhuru.

The only problem is, at this altitude ice takes a very long time to melt, and we are a huge group. We need a lot of water. I need a lot of water. I know from past experience that I have to work very hard to stay hydrated. My water bottles are nearly empty. I drink what I can and leave my bottles to be filled. The porters bring us dinner in our tents; up here we have no mess tent. I eat what I can and wait for water bottles. Water bottles never come. In the morning a few bottles are filled. We raise the prayer flags, do the Relay, hug and sing, and still no water bottle for me. I finally get back one of my bottles with the few sips of water left from yesterday.

We pack up our gear, and get ready to leave. I am struggling. I am dehydrated. I am exhausted. It's a beautiful morning so I take pictures although I can't really see. My eyes won't focus. This is a strange thing that happens to me at altitude ever since chemo. My eyes won't focus. No one can figure out why. I've had eye exams and brain scans. I've talked to all of my doctors. It's a mystery, but I hold out hope that sometime someone will figure out the answer. I merely take note of it; I know that as I climb down, it will eventually get better.

Uhuru is 300 meters away, about an hour. As we leave, we separate into two groups - one group heading up to Uhuru, the other to Stella Point and the climb down. I fall in with the group crossing the crater back to Stella.

I am finished with the mountain. I reached the summit rim, slept in the summit crater, but will not climb to the highest of the summit peaks. I am ready to leave, to not stand atop Uhuru Peak. 

As a climber, this seems like an odd choice for me. I have rethought it since coming home. As I said in my earlier post, when I have backed off a mountain in the past, it was completely obvious to me that that was the right decision. In the comfort of my house, where I have abundant fresh, clean water, where I have slept and eaten, and when I haven't thrown up for a couple of weeks, it's easy to think, "it was just one hour...." But that morning it was absolutely the right, if unexpected, choice for me. As we packed, I assumed I would climb up. But as we walked out of camp, I chose Stella. There was no question in my mind, and I don't regret it now.

Very quickly into this climb, the trip became less about a climb than about something entirely different. It was about a group - this group. It was about celebrating survivors, honoring caregivers, and remembering friends and family who were gone. It was about a journey, not a particular rock on this mountain.

We came together as 40 individuals - 19 cancer survivors and 21 caregivers. We each had our own experiences, strengths, and fears. Some of us had a lot of experience in the outdoors, some of us had climbed in the past. Others had little experience with hiking or even regular exercise. Two had never been camping. One was terrified of heights. But they came here in spite of the fears or lack of skills and experience. They came each for his or her own reasons: to reclaim their health, to overcome fears, to prove they could, to do something they never imagined. 

It strikes me that, although we each have our own stories, we have been creating something new on this mountain - a whole that is somehow more than it's parts. I keep thinking about Bach's Goldberg Variations - an aria plus 30 variations not on a single theme, but on the bass line. The aria is a sarabande, a stately French dance. The variations each present a unique character with different time signatures, harmonic flavors and pacing. They all are grounded in the aria's bass line, but each is a delight of individuality. However, as wonderful as each individual variation is, the magic of the piece comes from the synergy of the variations combining to create a whole.

Julie

I offer my own reflection for the group: The aria from the Goldberg Variations,

This is the Glen Gould recording from the early 80s.
Thank you to all of you. I am honored to have climbed this mountain with you.