Persistent hope

Every day I get deluged (or so it feels) but an unending heap of emails. One of my subconscious goals is to get an email for a cure for any one of my ailments so I check them all with a glimmer of hope.

Today I got an email from Medivizor titled "What is the recommended treatment for patients with hormone receptor positive breast cancer". I quickly leaped to read it.... And was immediately disappointed. Perhaps I had hoped for a new cure, or to find out that there was a new treatment to prevent recurrence, or some other miracle.

But no, it was only the release of information that I had previously heard: Tamoxifen is recommended for 10 years for premenopausal women with ER+/PR+ breast cancer or for five years plus up to five more years of an Aromatase Inhibitor such as Aromasin or Femara. Damn.

Hopes are dashed for today this morning but will reappear the next time I check my email.

Research hope and hopes dashed

I do follow the latest breast cancer, thyroid cancer, rheumatoid arthritis and fibromyalgia medical research. Some inner child is waiting for the cure to all of these ailments. I have learned a great deal about these ailments through reading the advances and get hope that some day a cure will be there. I also welcome the access to medical and other research across the board.

When I was first diagnosed with thyroid cancer in 1981, if I wanted to find information I had to go to a university's research library and read medical text books. It was confusing to say the least. In those days research was left to scientists and published in technical journals that were dense and textbooks for those learning the science or medicine that were no easy read.

Times have changed and I can find research every where. I can browse scientific journals online, set up Google alerts to send me the latest news, review the disease information on association websites, and have access to advances as soon as they are announced. However they all seem to be followed with the disclaimers 'more research is needed' and 'FDA approval is 5-7 years away'. Which can be frustrating, to say the least.

Every so often, I read some research that makes me wonder if I am over thinking, and perhaps the rest of us are too. I read this article on the impact of stress hormones on breast cancer recurrence or progression due to treatment resistance. It starts out by saying progesterone may stimulate that growth of cells that make cancer resistant to estrogen based treatments. Then it goes on to talk about the role of CK5 and goes on from there...

I admit it, I got lost. My breast cancer was ER-/PR- so do I have to worry about this at all? Well once I read it three times, I figured it out and could follow along.

But it made me wonder (which can be a bad thing), should I try to NOT follow all this research? Am I over thinking the hope that there is a cure out there? Should I leave this research to the scientists and not get myself bogged down in the details? I mean I do get the sense of hope from all the research that some day that cure will show up.

But is it worth letting myself get excited about the potential in the research and then get let down by the fact that the ending is 'more research is needed' and 'FDA approval is 5-10 years away'. Am I contributing to my own emotional medical roller coaster by trying to follow the advances and ensuing waiting?

A big part of any medical ailment is the emotional roller coaster that becomes part of your life after diagnosis. Learning how to cope with the roller coaster can be very difficult. And am I aggravating my own stress levels by accessing all this research? I will have to do some more thinking on this.

Hope

The one thing we all have to keep at all times is hope. Yes, hope. We all must continue to believe there is a rosier life out there for us.

But for a cancer patient, we must keep our hopes alive. What do I hope for?

• A cure for cancer
• My cancers do not come back

Two hopes. Nothing fancy. Two little phrases. Very simple. I work on these two hopes differently.

First I read medical research but do not obsess about it. I read about on going research and upcoming developments. I read about doctors' opinions of the research as well. I know not all research is going to help me. Some of the research may not pan out. Some of it will pan out but wont be available to patients for another 10-15 years.

But all of it gives me hope. I can see progress in the works to make sure fewer people go through medical misadventures, heal better, have a better prognosis, and lead healthier lives, even with a cancer diagnosis.

Second I do everything I can to make sure my cancers do not come back or reappear elsewhere in my body. I try to take care of myself. I go to the (damn) doctor as often as I should. I take my prescriptions. I go for suggested tests and other fun misadventures. I get exercise. I eat right (mostly). I do my best.

By being proactive in my health, it allows me to feel comfortable that I am doing all I can to make sure my cancers do not reappear. Or if they do, they will be caught early.

Hope is optimism and I need to keep it close in my life.

Ignore all the headlines

I think I spend too much time reading the headlines, especially in the category of health news. If I believed them:

• I will get the flu because it is rampant across the country
• The cure for many things can be found in some obscure arctic bacteria
• Booze is so bad for you, you could poison yourself easily.
• Pain killers are now the street drug of choice.
• Our phones are suffocating us.
• Cancer is due to back luck.
• The cure for some obscure form of cancer will be found shortly.

I am so done with all that. I am going to be healthier this year and am promising myself, I will stop  bouncing through the news headlines. We know Dr. Google doesn't know anything. So we should also assume that Dr Internet knows nothing.

Emotionally, grabbing at headlines can be very stressful. The yo-yo effect of the constant ups and downs are significant. Its sort of like scanxiety at a lesser level. I need to take more control of more levels of my life, as I have blogged about before, and this is just another one.

With bad medical diagnoses, we tend to grab at straws looking for the magic cure. Then we develop the bad habit of following anything we can find - usually ending at disappointment - and keep repeating the process because it offered us a small glimmer of hope however fleeting.

So I am going to stop reading the over-hyped headlines that offer false hope and start looking for real information. I can't live on false hopes and the ensuing roller coaster.

Chronic can be a good thing

When I was in cancer treatment, I was told cancer was being treated as a chronic illness instead of a terminal one. We all liked that. It was nice knowing that they didn't expect you to die anytime soon.

Living with a terminal disease is not fun. Your life is counted in weeks and months instead of decades and generations. But living with a chronic disease is not that great either.

We all know we came with an expiration date - life is a terminal occurrence. We are all going to die some day. But with a chronic disease, life just becomes a little (or a lot) less fun.

I have a couple of those chronic conditions that make life less fun. And that's how life goes for me. If you want to learn more about living with chronic ailments, this is a wonderful essay on life with chronic ailments.

And how you wake up each day with hope to be free of pain and and maybe there will be a cure. 

Life with chronic ailments is better than with a terminal one but how much is up for discussion.

Its never too late

 

Its never too late and never give up. This is a wonderful story o a woman with terminal leukemia, with a short time to live. But it was still not too late to get married, in the hospital with the chaplain.

Cancer may take many things from people but it can't take away all our dreams

In 2011, I want

1. A healthy year. For the past four years I have had more than 60 doctor appointments each year. This year I would like to be healthier so I don't have to go as often. I would also like to see a year of good health for all. H1N1 flu under control, cholera in Haiti under control, good health for all.

2. A political year without mudslinging and bashing. Why must politics be negative? There is no reason to say 'they were stupid' when you could say 'I can make it better'. There is no reason for negativity. No on ever did anything wrong, but someone else can improve on it. Its not like anything can be undone.

3. A year of international stability. Bombings, wars, riots, and more. Why waste money on them? Why not spend the money on taking care of the people in your country instead of letting others blow them up?

4. A year of tolerance. Why hatred and fear mongering? Why places like the Westborough Baptist 'Church' which protests at military funerals? Why spewing hatred and polarization? Does it really matter what one's skin color, beliefs, sex, age, creed, origins, or anything else?

I do wish happiness for all. And a cure for cancer too.

Stowe Weekend of Hope

We are off this weekend to go to the Stowe Weekend of Hope. We went last year and enjoyed it. Its one of those things that are free to cancer patients the first year and then at reduced lodging rates for additional years. I find 'free to cancer patients' somewhat as an oxymoron or something - cancer is a really high price.) Anyway, it should be a great time. They get some great speakers who focus on dealing with cancer and coping and hoping.

We will arrive on Thursday night. Friday has sessions on breast cancer all day. Saturday has a mini conference on Thyroid cancer as well as sessions on colorectal cancer - so we will be busy all day. There are also all sorts of other sessions on different cancers, living with cancer, dealing with cancer, coping with cancer, as well as celebrating still being here, vendors with resources for cancer people, etc. When you check in you get a name tag which lists the types of cancer you have. Most people have one type. I have two types but then there are people who have three or four types of cancer.

Then they make announcements to find people with your type of cancer and start talking. People open up to others with cancer in ways you have not seen until you are there. Cancer is isolating and if you don't have it, you don't understand. But put a bunch of us cancer people together and we will happily share our medical histories and compare prescriptions and side effects for hours. Because we all understand what is going on.

So if you are going to be in the area of Stowe VT this weekend, sign up at www.stowehope.org and come talk to the rest of us with cancer.

It IS all in your head

While wasting time online and stressing about my health yesterday (oops I mean expanding my intellectual horizons), I came across this article. Now it is long but definitely worth the read.

First of all there are lots of us who have had the privilege of getting cancer. (You note I call it a privilege because anything else just wouldn't be worthy.) And the ones of us who do the best in the long run are the ones for whom outreach and hope keep us going.

I can tell you when I changed from hopeless to hopeful. Shortly after finishing chemo, my husband and I went to a museum where the gift store was selling off their supply of holiday items. One of the things on sale for 90% off was the word "Hope" in big red letters, a foot tall, to hang on the wall. I splurged the whole $3 and brought it home and hung it on the wall of my office where it is to this day.

It is also about the same time, I learned that I can help others. I went from being a whining shriveled up blob of stress and concern to happy to help others. I started volunteering and learning how to help others. All of this helped me learn to better deal with my thyroid cancer as well.

Part of learning hope is learning to cope and taking charge of what we can. So we take our eternal optimism off to every doctor appointment and through every ache and pain and test and procedure. And life goes on.