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.

18 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!

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?

XF-15DCC said...

Well, here is my .02 cents from someone in your family.
Be careful what you read. As you know there are a million different places to get info out there on the net and only 10% (if that) are from a reliable source. The term “this patient” is used often. “This patient”, does it give what else this person is fighting?

You are living strong and NOT pretending well! I think the living strong and the rules of adventure are pretty much the same.

“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.”

One last thing, there is always a percentage shown, no matter how big or small and good or bad. To me that means you can (and with your POSITIVE outlook) win and beat this. Not everyday will be roses and champagne. Some will be dandelions and Mountain Dew.


Kevin

kerihadley said...

9. Believe that you will succeed
that's the step i think you must be stuck on, if your gonna get stuck in the process, this one is a good one to be stuck on. plus that means your over half way thru the rules of adventure.
we all love you, and smile.

nancytoby 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!

Cathy said...

As your little sister and a future scientist of some sort I would like to add my opinion on this paper. Opinion number 1: This paper is soley meant to give DOCTORS an objective opinion on if they shoud or should not have thier patients consider interferon. It does not mean that interferon is not going to work for you or for anyone else. They are going by data that this one group has compiled. And yea of course interferon is not going to work for everyone, all medicine is that way, you always have those whom do not respond, but than again you have those who do respond with outstanding resuluts.
Opinion/FACT #2 Any paper or scientists who tells you without a doubt that these results or any are conclusive are full of CRAP! Science is never fact it's Dogma. There is ALWAYS an exception to the rule and often many exceptions.
Fact #3 Cancer research is still in the stone age. It is impossible for anyone to know how it is going to respond and to what. All they can do is try and see how it works out.
Now as your sister I feel I have the right to say that I believe the best medicine is a positive attitude. You are and are going to continue to be kicking cancer's A** Therefore this depressing blog about interferon is redarndiculous. You ARE going to get through this bump in the road and continue to thrive. I will be there to watch you finish an Iron Man someday and I cannot wait to see you and spend another crazy christmas together in Vermont.

Cathy said...
This comment has been removed by a blog administrator.
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...

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!!!!

Keryn said...

Those are great rules for EVERYONE to live by.

Maybe it would ease your mind to talk to your doctor about the article and your treatments. Your doctor should always be willing to listen to your fears and either explain why he thinks this is the best treatment for you or help you explore other options. It is your life you're talking about here. Definitely not something you want to ignore. If you're at all worried, talk to him about it. Worry is not on that list of things to do. :)

And you do Live Strong. That's why I visit your site. You are an amazing woman. I know you may not feel strong or powerful all the time, but you have a big heart and a generous soul. You are an inspiration to me...keep it up!

surferchickHG said...

As the crazy middle sister, i would like to say when it comes to percentages and probabilites, i roll my eyeballs. I wonder what my chances are of being attacked by a shark while surfing tomorrow morning? They could be pretty low, or maybe pretty high, since i spend more time in the water than the average human. But do you know what? I don't care what my chances are. Because I am doing what i love and really that's all that matters to me when i'm out there. I know that is an odd thing to compare to the possibility of reoccuring cancer, but the way i look at it is you can't live your life thinking, what if?? And I learned that from watching you. You're strength has taught me so much recently. I've learned that every second of life is a blessing, and it is a waste to not make the best of it. Sure, we all face bumps in our life, weather it be taking time off from school or loosing a friend or fighting cancer. But it's how you deal with the things life throws at you, that's what really matters. You are such a strong, amazing person. When people ask how my "sister with cancer is doing", and i say "great, she just ran the marine corps marathon the other day". I wish you could see their eyes bug out and jaws drop. You are amazing, and seriously should be a poster-girl right up there with Lance for "Living Strong" As a very wise woman told me at about mile 10.8 of the Army ten miler, "FU*K CANCER!!!"
Like our booksmart-genius little sister said "Any paper or scientists who tells you without a doubt that these results or any are conclusive are full of CRAP! Science is never fact it's Dogma. There is ALWAYS an exception to the rule and often many exceptions." You are the exception Holly. I saw it in your eyes when we crossed the makeshift finish line that was actually the starting line somewhere near the Pentagon during the Army "much further than ten" miler.
This cancer is not in charge of your life. HOLLY is in charge of your life. And HOLLY better be prepared for a big face full of snow after our anual sledding-train-gone-wrong-crash that always leaves us giggling and gasping for air (and usually wondering if I broke my fingers, haha). Bring your snowpants!!! I love you and can't wait to see you!


p.s.... that whole "some days may be dandelions and Mountain Dew." sounds like fun to me, sign me up!!

Iron Benny 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.

Nytro 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?

jsoulnh 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