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Feeling better

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Oct. 9th, 2006 | 10:25 am

I don't want to get into the habit of using my blog to reassure people since it is moreso a place for me to journal what I am experiencing and to communicate that to those of you that are interested. And then there are the times that I am lucky enough to get heartfelt responses and support that makes me feel really good. Thank you for that.

Things are going better for me this week. I've pulled out of my nadir and in the process discovered that one of the drugs, prednisone, that my doctor prescribed along with my chemotherapy is unnecessary! I would never have discovered this if I hadn't asked a lot of questions and really investigated it. This is a MUST DO for people in my situation. In this case prednisone is what they used to use for prostate cancer before there was any chemotherapy and it has just stayed on the "standard of care" list since then. Do not assume that your doctors, even the best of them, will inform you about the options of whether or not you need to take a drug, you have to ask.

And in this case the prednisone was keeping me up at night and contributing to the emotional swings that I have been experiencing (the hormone therapy does that to and unfortunately I have to stay on that) . I have halved my dosage of it and plan to taper off (which you have to do it you are taking it) this week.

Anyhow, I am feeling better, enjoying my life as much as I can -- in fact yesterday was the first day in a long while that I felt completely normal, like I didn't have cancer at all and I feel that way this morning to. I certainly hope to have more of these days.

Much Love,
~J

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Comments {19}

Glad to hear it...

from: lanihorn
date: Oct. 9th, 2006 06:02 pm (UTC)
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You know one of your best qualities? It's the fight in you that makes you take initiative in your own care and treatment. I am SOOO glad you figured the thing out about prednisone. It's upsetting that you had to figure it out yourself, but not totally surprising, unfortunately.

I am really glad to hear you are feeling better too. Enjoy this reprieve from the unpleasantness. I hope it lasts awhile!

Love,

Lani

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jerumi

Re: Glad to hear it...

from: jerumi
date: Oct. 14th, 2006 07:55 am (UTC)
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Thanks Lani,

Yeah, and I just discovered another side-effect of long term use of prednisone -- osteonecrosis of certain joints! So WHY ON EARTH would they give it to someone who already has bone metastasis?

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(no subject)

from: anonymous
date: Oct. 9th, 2006 07:22 pm (UTC)
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Ha! Good for you. I had to take prednisone in treatment for a systemic reaction to wasp stings, and just that alone was enough for me to be over-the-top with energy. I was seriously up all night every night obsessing about gardening (not that I'm not slightly obsessive about it to begin with) but it was awful! I can't imagine that on top of everything else you are taking. You're so smart! Looking forward to seeing you soon. xxoo Jen

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prison from feer

from: anonymous
date: Oct. 9th, 2006 08:47 pm (UTC)
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I have just found your blog... reading about your journey to come to terms with pain and suffering, a Dharma path of sorts. I don't get a sense of sadness in your blog; rather, i find it informative and inspiring. I will continue to read your blog.
Your old friend,
Greg Higgs

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jerumi

Re: prison from feer

from: jerumi
date: Oct. 14th, 2006 07:52 am (UTC)
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Thanks for tuning in Greg. Its nice to know that you found the blog. I have accepted (to some degree, and it changes constantly) that this is my path and I am walking it as best I can. It has certainly forced me to look at the impermanence of things and to value every moment that I have.

Hopefully we will have the opportunity to see eachother sometime soon and to meet eachother's wives. Maybe we could meet in Bella Coola?

your old friend,
Jeremy

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Keep going...

from: kilv
date: Oct. 9th, 2006 09:37 pm (UTC)
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Glad to hear you're feeling a bit better.

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jerumi

Re: Keep going...

from: jerumi
date: Oct. 14th, 2006 07:57 am (UTC)
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Thanks Bro. Hope yer well too. Lets talk on the phone sometime soon.

Love,
Jer

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Re: Keep going...

from: kilv
date: Oct. 14th, 2006 03:30 pm (UTC)
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Call anytime.

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NEF

from: anonymous
date: Oct. 10th, 2006 02:28 am (UTC)
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Hi Jeremy! This is Nancy. Your friend from the east coast. Jersey that is. This is the first time I am reading your journal. I had no idea you were not well and that you got married. I'm sad to learn this. I'm happy you found someone who takes great care of you and obviously loves you very much. That's the bright side. I hope you continue to feel better everyday. Congratulations to you both! Did I do this right?

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jerumi

Re: NEF

from: jerumi
date: Oct. 14th, 2006 07:43 am (UTC)
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Nancy? WOW - how did you find this blog? Its nice to hear from you. A lot has happened since last we talked..

I hope all is well in NJ. Thanks for the congrats, I'm very happy to be married to Beth and she certainly makes life wonderful in spite of my struggle.

Lots of Love,
Jeremy

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(no subject)

from: anonymous
date: Oct. 10th, 2006 03:04 am (UTC)
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Hey, Jeremy. Happy (northern) Thanksgiving. I'm thankful for your blog/journal: I can write without worrying about overloading you with emai. I'm also thankful that you're having a good day today! Thinking about you newlyweds (great wedding photos!).. Sending love and glorious healing sunshine from Victoria. Thanks so much for staying in touch. Bev & Kelsey

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jerumi

(no subject)

from: jerumi
date: Oct. 14th, 2006 07:40 am (UTC)
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WOW - great to hear from you two! How is life in Victoria? Have you been back up to Juneau recently? How can Beth & I become citizens? We talk about that occasionally..

xo,
J

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Shana

(no subject)

from: girlinthemoon
date: Oct. 10th, 2006 04:24 am (UTC)
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Hey. Jer. I'm glad to hear about the predisone, too. Glad that you're feeling a bit better, and I hope that the beautiful weather is helping to keep your spirits sunny, too.

Love,
Shana

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jerumi

(no subject)

from: jerumi
date: Oct. 14th, 2006 07:38 am (UTC)
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Thanks Sis :) I hope all is well in SJ too. Looking forward to seeing you again sometime soon.

xo,
J

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Hello Friend

from: anonymous
date: Oct. 10th, 2006 05:49 pm (UTC)
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Hi Jeremy,

Congratulations to you and Beth. I've relocated to Juneau and have taken a project with the Division of Vocational Rehabilitation as the Southeast Evaluator working to help people with disabilities explore new opportunities for work. I keep you in my heart and would love to stay in touch.

Dave Belton
davidmbelton@yahoo.com

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jerumi

Re: Hello Friend

from: jerumi
date: Oct. 14th, 2006 07:37 am (UTC)
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Very nice to hear from you David. It would be great to see you again soon. I'll let you know when I'm in Juneau again. Hopefully next year..

~J

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Kolakoski

(no subject)

from: kolakoski
date: Oct. 12th, 2006 07:15 am (UTC)
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"...you have to ask."

Indeed, your mother-in-law has been preaching a patient-proactive approach to our health care system for years. It's a MUST DO for people in any situation, and I'm glad you have the fortitude to ask all the right questions.

Sorry I've been vacant from LJ, it's been one of those times in a semester for the past few weeks.

-Mike

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jerumi

(no subject)

from: jerumi
date: Oct. 14th, 2006 07:36 am (UTC)
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I'll have to ask her about that sometime..

Nice to hear from you again. I hope all is well in AZ.

~J

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Taking charge

from: anonymous
date: Oct. 16th, 2006 05:45 pm (UTC)
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Hi Jeremy,

I'm a friend of Lani's from math education. Your story is so famliar. One of my good friends had a rare and nasty form of cancer, and got through it I believe because her boyfriend played such an active role in her treatment. He constantly challenged the doctors' recommendations and sought multiple opinions. He also did a tremendous amount of research on his own, looking into extenuating factors that might play a role in her response to different treatments, and reading up on the latest research from a varietey of sources. By the end, he would have been write a publish-able research report, with new findings for the field.

I have a great deal of respect for doctors, but as I would argue in education, there's a need for the "experts" to provide opportunities for their patients/students to critically reflect on what they are learning. (See Lani's research for more information on this.)

Thanks for sharing your story with all of us!

Take care,
Vicki

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