Sunday, November 27, 2005

Down but not out...Adapting

I think there is a bunch of stuff that has combined in my life that has dragged me down just a little bit. It's been some time since I struggled this much with my emotional well-being. The anti-depression meds I am taking to counteract the side effects of the Interferon have been doing their job very well but drugs can only do so much.

I think my latest funk can be attributed to a few factors:

1. No significant exercise since the Marine Corps Marathon (4 weeks - less than 3 workouts a week and none in the last week)

2. Extra work on a big, high profile project for Work (to be completed Dec 1)

3. The upcoming holiday season (I think I missed my family more than I thought I might and am anxious to see them in 3 weeks...)

4. Some new reading that I have come across on Melanoma and the impact (or lack thereof) of Interferon on overall recurrence.

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Since my ankle seems fully healed, Factor number 1 is immediately resolvable. I plan to do what I can to get back to some kind of routine this week.

The extra work will be done December 1st, regardless of the outcome... but it is looking to be an outstanding outcome. Cross that off the list...

3 weeks is not all that long to wait to see my family and I am bringing Jim home with me!! It is a holiday to look forward to.
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That just leaves me with the giant millstone around my neck that is Malignant Melanoma and my treatment. I'm struggling.

The article, which you can find here
discusses how Dr.'s can help patient's make decisions regarding High-Dose Interferon treatment.

This is the first paragraph that slapped me in the face:

"Among patients destined to recur, a year's worth of HD IFN treatment can delay the time of recurrence in a small subset, although for half of these patients this delay will be less than 1 year. However, the overall chance of recurrence and the overall survival is not improved. This means that, if the patient is destined to relapse and die of melanoma, HD IFN does not affect this nor does it significantly delay the time of death."

This example punched me in the gut, since it is my exact diagnosis:

"As an example, we may consider a stage IIIB patient with a single, palpable regional lymph node involved with melanoma. This patient has an approximately 50% chance of dying from melanoma over 5 years, a risk that is not improved by HD IFN according to the published data. This means that if the patient chooses to receive HD IFN, he runs a 50% risk that he will spend at least 20% of his remaining time (presumably the best 20%, because it is the year immediately after surgery) on HD IFN."

FIRST OFF, I acknowledgee that the paragraph above has an awful "tone"! It would read much better if they said "this patient has an approximatelyy 50% chance of surviving Melanoma over 5 years..." but it doesn't.

My immediate friends and family would say "Stop reading, don't think about it" but the truth is that I have to think about it and I have to acknowledge the entire scope of this diagnosis. I haven't been doing that much lately. I'm not sure how much lately has been "Living STRONG" and how much has been "pretending WELL".

A very wise friend and Old Man sent me a wonderful book some months ago that I devoured call "Deep Survival: Who Lives, Who Dies and Why" by Laurence Gonzales. While the stories are those of epic survival .. the philosophy applies.

The book talks about how we build "mental models" and then act according to our expectations instead of acknowledging that the environment we are in has changed. Those who do not recognize the change, make decisions based on false expectations and in these examples; die. The survivors are the people who "at some point" acknowledge that things are different and they have to react to what is happening "here and now" and adapt.

The "RULES OF ADVENTURE" are outlines as follows:

1. Perceive,believe
2. Stay Calm
3. Think/Analyze/Plan
4. Take correct, decisive action
5. Celebrate your successes
6. Count your blessings
7. Play
8. See the beauty
9. Believe that you will succeed
10. Surrender
11. Do whatever is necessary
12. Never Give Up!

Sounds like some pretty good rules to me. Time to put more of them in action.

12 comments:

jeanne said...

What a powerful post--with lots of meaning for those of us not struggling with cancer.

So thanks.

I have no words of wisdom better than that list your wise friend gave you.

I'm glad you are tackling all of this head on.

AND, you are a fellow MCM-er! You go, grrl!

Ann (bunnygirl) said...

Wow, you have a lot to think about. But don't listen to those who would tell you to quit reading and researching! This is your treatment, your life! Doctors are not gods. They are fellow humans who, like us, sometimes make mistakes or overlook things.

FWIW, my DH has Hep C and we've resisted him going on interferon because of its low rate of success. Now you're making me wonder just what the heck it's really good for!

I read recently that in Europe they recommend a low-glycemic diet for cancer patients because they believe sugar fuels cancer. If you haven't tried it, it's worth a shot. Low glycemic is supposed to be good for you, anyway. Going without cookies will only make you feel like you're dying.

Or it would me, at any rate! ;-)

Good luck, and keep us updated, okay?

Nancy Toby said...

Holly,
*BIG HUG* You *are* living STRONG. It doesn't mean that you won't have depressing thoughts and low days. It's the most difficult thing in the world that you're doing. Those articles have to be really tough to read - but of course you need to have all the facts.

You rock, Holly. I wish I could help more.

Downhillnut said...

You had quite the mountaintop experience with your marathon, and then on the way back down you have to face some hard facts. Sure, you're going to feel downer than usual. But you ARE Living Strong. Living through all your challenges, aware of them, and believing that you will conquer. Never Give Up, Holly!

Bolder said...

oh, how i KNOW it is not easy... keep on fighting... don't get down... every second counts.

live strong Holly.

Cliff said...

An excerpt of a poem by Dylan Thomas:

Do not go gentle into that good night,
Rage, rage against the dying of the light.


I had my liver transplant in 1991 b/c of a tumour. That was a long time ago and I was only ten. If i have cancer right now, I would not know how to react. I do know that I would be more scare now than when i was 10 years old.

You are so strong to talk about your situation. I just read something from Jim Collins I want to share it to you. It is long....and it is at home. I will write more after work.

Steven said...

What a great post. It's OK to have a low period every once in awhile. Don't sweat. Just get back up and keep on living and doing your thing.
Stay strong...

Dr. Iron TriFeist :) said...

You are an inspiring woman. If someone asked me if you were Living Strong or Pretending Well, I would laugh at them. You Live Strong. Period.

**HUG***

Thank you for being willing to share the good and the bad of your treatment with us. You're so positive all the time, it's easy to forget the bad that haunts you.

I respect your desire choose to face cancer head on, to be realistic. In the mean time, I will stand on the side of rampant optimism, knowing that if someone can face down a bad diagnosis, it's you.

GO HOLLY!!!!

Papa Tweet said...

I don't really know what to say in regards to this article. However, I can say that you are living strong. You had a choice to make, you could take your diagnosis and wilt away, or you could tackle the illness head on and train for Ironman. Now, does the person that I just described sound like she is pretending well? Ya, I didn't think so. Thanks for the motivation and daily lessons in perspective. You are strong and will always be strong. Hang in there.

Unknown said...

wow... what an inspiration you are to all of us. seriously. when i'm getting down on myself about this injury or that injury, i just need to keep the perspective that there are others out there struggling with real problems. this sounds trite and stupid, but i am a firm believer in the power of positive thinking. ironbenny and i will be sending positive thoughts your way. good luck!

as far as the being down... TOTALLY UNDERSTAND. the three root canals and subsequent infections had me down and out for about three weeks. on top of that, work was INSANE. when i finally felt better and ran in a sprint tri on Thanksgiving... well, that was awesome and my whole perspective on life changed in that moment. it's amazing what exercise and a lack of stress can do for you.

good luck with all!

Oldman said...

okay what are all these neg thoughts? Your the survivor! yes not everyone who takes HD IFN survives but your not going to one of them. DO WHATEVER IS NECESSARY and for you HD IFN is necessary.

On Liverstrong's website the offer a FREE notebook to cancer patients, have you ordered yours yet?

Solarjo said...

Holly,

If you haven't checked them out, yet, you might like to join the Cyclists Combatting Cancer listserv...(see www.ridetolive.org). They all like to live strong, like you, but face similar challenges...with what one cancer survivor fellow likes to call, combatting the "the wee 'C'." (He hails from Scotland by the way). They are a great group and have some nice bikeware, too.
Every year some of the CCCers group goes to Austin to ride in the Ride for the Roses century. I haven't been, yet, but maybe someday! They always have a a wonderful time. Hoping for more "ups" than "downs" for you.
Blessings!
'Ride to live' ---Johanna