Scatter my ashes here...

Scatter my ashes here...
scatter my ashes in the desert...
Showing posts with label Cancer Survivors Day. Show all posts
Showing posts with label Cancer Survivors Day. Show all posts

Saturday, March 12, 2011

Another Year!

Key lime pie, the perfect birthday cake.

It's been two weeks since LOST and I feel recovered. I've had some great workouts this week, short distances but I felt good. I just got home from two Rock Repeats and nailed both of them faster than I did all last year or the year before that. I feel like I'm starting my final Badwater training at a much higher fitness level than I did last time.

I am so thankful for my health and my ability to train and run at this level. I've been feeling good. I just had my mammogram last week and thankfully it was normal. I was almost hyperthyroid when I had my labs drawn in January. I have made a small adjustment in my thyroid medication and it seems like I don't need so many long naps the past few weeks. I'm going to get my labs drawn in a couple of weeks to see if it's working the way I think it is. I need to get it just right before Badwater, being hyperthyroid makes it harder to tolerate the heat.

My birthday was the other day and I celebrated another year, which is always a good thing. Making the most of every day adds up to more good years. I was fortunate to have spent a good portion of this birthday around people who know why having another birthday is always worthy of celebration. Those are my wonderful friends from the Survivorship Advisory Council, Sharing the Cancer Journey, and the PVHS Foundation.

I shared my story and gator pictures from the LOST 118/Jurassic Park 114, and they shared their company, wisdom, stories, a pistachio birthday cake, a card for me, and their enthusiasm about our ongoing efforts to make the Poudre Valley Cancer Center happen.

This week the NCI (National Cancer Institute) and CDCP released new figures on the number of cancer survivors in the U.S., about 12 million. That is roughly 4% of the population, or 1 in 25 people.

These numbers only strengthen the case for providing local facilities to provide services for cancer patients and survivors, or thrivers, as I prefer to say. Here in Fort Collins we are raising funds to build a cancer center which will do just that. Anyone with a history of cancer has special healthcare needs because follow-up and vigilance are so important. This is a major portion of our population and is growing all the time.

We've had difficulty getting our local newspaper to help us bring this cause front and center, and I think part of it is the unwillingness to face the fact that cancer is a nearly universal disease. They seem to think, "but we just did a story on cancer", maybe they think it won't sell papers. But people are curious, and they love reading stories about cancer survivors with positive outcomes. More and more, we are seeing positive outcomes.

When it comes to cancer, I have found that people don't want to think about it, they don't want to know about it, and the idea of personally having to face cancer oneself is wrapped in a lot of fear. People don't want to know about what they fear, they'd rather ignore it. Accessing preventive care services, like colorectal and prostate cancer screening, mammograms, pap smears, skin cancer checks, all of these ways we have of detecting cancer early, is still something that too many people avoid.

As a registered nurse who works in an oncology outpatient clinic, I am amazed by the number of my fellow nurses in the other areas of the hospital who say to me, "I could never work with cancer patients." "I don't know how you do that." "That must be so depressing." "I know I should do it, but I keep putting off my mammogram/pap smear/colonoscopy".

Actually I have never once felt depressed since working here. Yes it is sad and difficult when we lose one of our patients, or when one of our patients gets bad news. It can be challenging to provide the right amount and type of support to the patient and patient's family, too.

But I feel great about what I'm doing. Yes I am providing treatment for people with cancer, sometimes with very toxic drugs, but those will give them a much improved chance at a higher quality of life for a lot longer time than if they refused treatment.

Most nurses outside of oncology that I've talked with are unaware of the numerous biological therapies we are using that don't have the toxicity of chemotherapy, and the many amazing drugs we have available now to prevent nausea, infection, and help patients successfully complete a course of chemotherapy with many fewer side effects than just a few years ago.

I would say 90% or more of the patients with cancer that I see have healthier, more positive attitudes, with a better appreciation of life and gratitude for all the wonderful things in their lives, than people who have never experienced cancer.

If so many of my fellow nurses who don't work in oncology, who are generally much more informed about health care than the general public, are this uninformed or in personal denial of the need for information on cancer prevention and treatment, then imagine how little the general public knows!

What this reaction from my colleagues tells me is that they are largely uneducated about the current state of cancer treatment and survivorship in this country. And we need to educate them, because they are the ones who can make a huge difference in educating the public. They can be our allies in explaining how important it is to have access to services under one roof for people undergoing treatment and for those who have completed treatment.

This includes not only traditional surgery, radiation, and chemotherapy, but also complementary therapies, wellness services such as physical and occupational therapy, exercise classes, nutrition information, financial re-planning, and support groups for the social and emotional health of people who have had their life courses significantly altered.

Fatigue is a huge issue for people undergoing cancer treatment and after they have completed treatment. This affects quality of life, including ability to work, maintain financial stability, social life, and just doing everyday tasks. While going through cancer treatment it's not unusual for a patient to have 80 or even 100 separate appointments with doctors and other care providers.

The thing about chemotherapy and related cancer treatments is that timing is everything. You can't cancel an appointment, the effectiveness of the drugs depends on staying on a strict schedule. Your chance at survival depends on it.

Imagine being exhausted all the time but having to keep multiple appointments each week, and what if you had to drive to those, and those appointments were all in different places, different offices, and maybe even different cities. What if, on top of that, you felt too tired, sick, or couldn't feel the soles of your feet due to side effects of chemotherapy.

Imagine keeping track of times, dates, and locations of all those appointments when your brain is foggy from treatment. Imagine trying to find a friend or family member who could take you to all those appointments, especially out of town appointments.

Having a centralized location in your hometown for all of these services would make a huge difference in quality of life, ability to keep appointments, and a successful outcome for people with cancer. The Save Change to Create Change program is trying to raise a million dollars, but it's not the only way we're trying to raise funds.

If one in two to one in three of us will have cancer at some point in our lives, there's no way to avoid the issue, even if you are not personally diagnosed with cancer. Someone you care about will be, at some point. It's a huge public health concern and it needs to be addressed, especially with the aging population we have.

It's time for all of us to dig into our pockets, couch cushions, car seats, write letters to the local paper telling them to make this Cancer Center a priority in our community. Cancer Survivors' Day is April 2.

Saturday, April 10, 2010

What Really Matters

Today I presented a slide show and question and answer session at the beginning of the PVHS Foundation's Cancer Survivors' Day event, before the featured presentation by Sean Swarner.

The Cancer Survivors' Day event was inspirational and enjoyable. They had a smaller turnout than expected but it was an enthusiastic audience asking lots of questions.

Sean's presentation was inspirational, he is truly an amazing, determined, focused and dedicated young man. Sean is a two-time cancer survivor, as a teenager, first Hodgkin's lymphoma, then a type of sarcoma that resulted in part of his lung being removed. He has climbed the highest peaks on all continents, and intends to go to the North and South Poles. He is raising funds and awareness for his own foundation.

He talked in detail about his climbing especially of Everest. He had some great things to say about hope, inspiration, and motivation. The thing he said at the end was what I liked best. He said, "We shouldn't worry about dying, we should worry about not living a life that matters."

Right on, Sean.

I believe it's how we live our lives, with enthusiasm, integrity, and purpose, that gives meaning to our time here, no matter how long or short that time is. Life is as big as the sky.

I presented the slide show and answered questions for about 40 minutes before Sean's presentation and got lots and lots of questions about ultramarathons. The other night I was out at a birthday party for Dennis's friend, lots of PVHS people, and I got a lot of questions there too. I love the curiosity, people are fascinated, and I love doing these presentations. I always hope that I find out later that I inspired someone to do something extraordinary, whatever that means for them.

Sean also said some other things in his talk that I found interesting. For example, his approach to visualization of reaching a goal and then making things happen is similar to mine. I sometimes think people who participate in activities that are considered "extreme" or out of the ordinary in terms of endurance and effort, are wired differently.

But I also believe that wanting to do something, really wanting something, is a factor in driving oneself to see it through to completion. I was asked what I do when I feel down, when I feel like quitting. I answered, in Badwater, I wanted it so badly, I never even questioned once that I was going to finish. And when I did finish, I didn't want it to end, I wanted to keep going.

Someone else asked me if I ever pray when I'm out there. I told her, I don't actively pray but I think there's a process going on in the back of my mind that is something like that. I told her how my friend Chris (a cancer survivor himself) says running is like one long prayer.

After we were done speaking, I talked with Sean briefly, he told me he thinks I'm crazy. I told him I think he's crazy, but I think it's so admirable what he does.

Soon my slide presentation will be on You Tube. I'll post a link to it then. I am also going to give a similar presentation this Thursday at Sharing the Cancer Journey.

I've been tired this week. I cut my mileage a bit as a result. I won't do anything longer than 20 miles at a time this week or next. I know endurance-wise I am where I need to be, having done four 50+ mile runs within the last 3 1/2 months. I heard from Mike in Florida, we are starting to make our plans for race strategy. He has a van for a crew vehicle. He's running the entire course with Bob, the race director, in a few weeks. He'll be able to update me on any changes in the course.

Mike advised me not to even think about a PR, based on the weather conditions. I am prepared to finish, and whatever additional time I have left over on the 32 hour time limit will be extra sleep time on the beach!

I'm starting to get excited about the trip to Florida and the race. I need to dig out my Jimmy Buffett tunes!