Scatter my ashes here...

Scatter my ashes here...
scatter my ashes in the desert...

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.

5 comments:

christopher said...

Alene,

I couldn't agree with you more!!! Cancer Survivorship is here to stay.
I applaud your personal journey of wholistic health and happiness. Running is key to your personal practice. And your personal practice is key to running. I'm starting to sound like Ken Sunny Skies.
Stay well,
Love,
Christopher

Alene Gone Bad said...

Thanks Christopher, and thank you for being such an inspiration to me, in so many ways: running, wholeness, survivorship and thriving, attitude, and being the wonderful, authentic human being that you are!

As Sunny Skies would say, "Help bring sanity to our world".

You stay well too.

Love,
Alene

Eddie said...

You are a strong person, strong lady Alene...

Eddie said...

p.s. that is a GREAT picture of the pie, gator and four legged wonder.

Alene Gone Bad said...

Thanks Eddie, that is Iris, The Buffalo. She was ready to blow out the candle for me.