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RE: Got Prayers? (Or Good Wishes?) - 6/9/2013 9:30:21 PM   
kdsub


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dcnovice I’m going to tell you something I’ve never told a soul before. In 1990 I started tripping going up steps all the time. When I would walk on a sidewalk I was catching my toes on the seams. Then I started to have trouble swallowing and decided to go to the doctor. He sent me to a neurologist who performed an EMG. I hate those damn tests.

Anyway he diagnosed me as having Amyotrophic lateral sclerosis. After a few months of EMG testing he told me I had a particularly aggressive version and gave me less than two years to live.

Cancer is bad no doubt…but if you really look into ALS and how it kills you will understand why I contemplated suicide.

From that day on I started asking for and saving sedatives with the intention of taking them when I thought I was on the verge of becoming totally incapacitated and it would be too late to act.

The disease progressed to where I was bed ridden and unable to swallow food. I was taking nourishment through a tube and was in need at times of a respirator… I could barely raise my hands. I thought every night how I would slip the pills into the liquid reservoir before my feeding but always decided to wait one more day.

Then to my amazement I began to notice I could breath easier…and after more time went by I was able to swallow.

Wishing and praying I got two more opinions from other neurologists who were also amazed looking at my EMG records that I was indeed improving. They had never seen this before.

They suggested I see the preeminent expert on ALS in my area who was the chief of neurology at Barns Hospital . After 2 days of testing and multiple consultations and many doctors gazing into my eyes, never could figure what they were looking for in my eyes. I was deemed not to have ALS but an infection in my brain and spine that mimicked ALS. They did not know if I would fully recover but at least the disease did not progress.

One year later I fully recovered and kept the bottle of sedatives as a reminder of how close I came to killing myself and the pain I would have caused my children. Never give up hope… you just never know when God or blind luck will smile on you.

Butch

< Message edited by kdsub -- 6/9/2013 10:25:41 PM >


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RE: Got Prayers? (Or Good Wishes?) - 6/10/2013 4:20:55 AM   
garyFLR


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quote:

ORIGINAL: dcnovice

Friends ---

Tomorrow brings an important and scary doctor's appointment. I'd be grateful for any prayers, good wishes, healing energy, karma, or what-have-you you can send my way.

Many thanks!

DC


Hi DC, I know this is ages old, but, I've just caught this thread, I hope everything's ok, & you have my best wishes in retrospect. Once again, thanks for the Eddie Izzard sketch. Take care, Gary.

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RE: Got Prayers? (Or Good Wishes?) - 6/10/2013 3:27:40 PM   
LafayetteLady


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Well, you don't seem to be worse for wear over the mediport, so good deal.

I assume you are still cane free?

As to your email archive, I think what you were doing was perfectly natural. You have been amazingly strong in your posts here, truly inspirational for anyone else who might be suffering from some insidious illness. You show us with each post how with strength and humor you face each day, and that even on the bad days, your thoughts of giving up are overpowered by the strength of you wanting to live.

I just re-read your sig line. How apropos for your life.

Prayers, good thoughts and energy are coming your way every day.

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RE: Got Prayers? (Or Good Wishes?) - 6/12/2013 7:50:10 PM   
dcnovice


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quote:

Never give up hope… you just never know when God or blind luck will smile on you.

Too true. Warmest thanks for your wonderful story and kind thoughts. I appreciate them more than I can say.

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No matter how cynical you become,
it's never enough to keep up.

JANE WAGNER, THE SEARCH FOR SIGNS OF
INTELLIGENT LIFE IN THE UNIVERSE

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RE: Got Prayers? (Or Good Wishes?) - 6/12/2013 7:53:44 PM   
dcnovice


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FR

Tonight's update is a bit twisted, even for me. It just sort of welled up. Better that than tears, I figure.

’Twas the night before chemo, when all through the house
Our hero was being a bit of a grouse.
As he lumbered about, acting just like Eeyore,
You’d think no one on Earth had been through this before.
He wasn’t exactly afraid, he decided,
But he did rather hope that the next day provided
A calm, easy treatment with no foul effects
As the potion heads south and then quickly corrects
That impertinent MiMA, who needs to shrink fast
Ere it’s time to evict her from out of my ass.
I see that I’ve shifted: third person to first.
That happens when poems emerge in a burst
Of late-night bravado and efforts to cheer
As bedtime approaches and morning draws near.
How will things unfold? There’s no way now to tell.
It might be a drag, or it may be just swell.
Let’s hope for the latter and pray (if inclined)
That tomorrow’s infusion helps heal my behind.


The festivities start—in theory—at 12:30 ET tomorrow. Wish me luck! (I’m guessing one does not say “Break a leg!” in this situation.)

_____________________________

No matter how cynical you become,
it's never enough to keep up.

JANE WAGNER, THE SEARCH FOR SIGNS OF
INTELLIGENT LIFE IN THE UNIVERSE

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RE: Got Prayers? (Or Good Wishes?) - 6/12/2013 8:02:49 PM   
LafayetteLady


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Much luck and wishes for no or at least only a little nausea on your chemo.

I stick by what I said at the beginning of this. You need to create a blog, write a book or even just talk to other cancer patients. I know how tough it is for all of you (ok, I know how tough it is from being a relative of a cancer patient), and I think you can really give a lot of hope and laughter to others. It might help you as well.

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RE: Got Prayers? (Or Good Wishes?) - 6/12/2013 9:22:48 PM   
MissToYouRedux


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quote:

ORIGINAL: LafayetteLady

Much luck and wishes for no or at least only a little nausea on your chemo.

I stick by what I said at the beginning of this. You need to create a blog, write a book or even just talk to other cancer patients. I know how tough it is for all of you (ok, I know how tough it is from being a relative of a cancer patient), and I think you can really give a lot of hope and laughter to others. It might help you as well.


*Everything* she said. I only wish my bad times come out in poems like yours. [insert hug smiley here]

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RE: Got Prayers? (Or Good Wishes?) - 6/13/2013 9:16:06 PM   
dcnovice


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I've been carefully saving my updates (73 pages so far!) in the hope they'll prove the makings of a book. I like the blog idea but don't have the tech skills to launch it myself.

Meantime, I'm happy to report that my maiden voyage was largely smooth sailing.

Tonight's update:

Thirteen, you may recall, was Woodrow Wilson’s lucky number, and it pretty much came through for me today. Things went as well as I could have hoped. A dear friend from St. M’s picked me up at 11:30 and ferried me over to Georgetown. God bless him, he then stayed with me the whole time, till half past four.

The Infusion Center was quite lovely, with a huge multipart painting I coveted. (For those of you who’ve been to radiation, it’s way better than the sunflowers!) Fortunately, smuggling it out was not even remotely an option, so I didn’t have to wrestle with temptation. Also, it’s four times the size of my longest wall.

As usual, the Georgetown staff were kindness itself. They made me comfortable and deftly tethered me to a medley of IVs. When the nurse went to insert the needle into the Mediport (through a layer of skin), she warned “Big stick.” I clenched my fists but felt only a mild jab—a huge improvement over the search for a vein. I may never give the Mediport back!

Over the course of the session, I kept thinking of a stage direction from Margaret Edson's brilliant play Wit, which I’ve reread several times lately with ever-deepening appreciation. The note says, “Every time the IV pole reappears, it has a different configuration of bottles.” Too true! I started with an anti-nausea agent coupled (tripled?) with steroids and sugar water. Then came the main course: a pair of polysyllabic chemicals whose names I’m too tired to look up. All this took about three hours.

The time passed reasonably quickly, and I was largely effect-free, thank heaven. I had a few whispers of queasiness, but I think that was my brain/body doing what it thought it was “supposed” to do. The same thing happened when I began oral chemo. I’ve learned not to read drug inserts (those flimsy sheets of dense, six-point type that lovingly detail every possible side effect reported in any clinical trial, even once), because I’m sadly skilled at producing symptoms. If you told me chemo would produce an ectopic pregnancy, I’d have one. I did feel oddly warm for a while, which puzzled my nurse.

Once IV chemo was done, the nurse flushed out the tubing into my Mediport, and my oncology homework began: 46 hours of toting a portable pump that “infuses” (a verb that makes me think I’m absorbing herbal tea) the aptly named chemical FU into my system. The realities of the pump were a bit of a jolt. Based on no evidence at all, I’d pictured a slim gizmo, about the size of my hand, that would be attached to my chest and discreetly do its noble work. Wrong. The device looks like a 1970s-era calculator and dwells in a black nylon pouch about the size and shape of a fanny pack.

That means wearing the pouch atop my clothing, which is an odd feeling. I’ve been toting it on my right side with the strap crossing my neck to rest on the left shoulder. I tried the right, but the damn thing kept slipping. This oh-so-stylish accessory makes my treatment fairly public, at least to anyone who spots the tubing. I’m not sure how I feel about that. I’m not ashamed of the cancer (I’ve even learned to say “rectal” instead of hiding behind “colorectal”), but I’d prefer to have some say about whom I tell. Of course, most folks will probably think I’m just an uberdork who doesn’t know how to wear a fanny pack. That briefly distressed me, but then I remembered it’s hardly the only thing keeping me off the cover of GQ.

I got home safe and sound and (thanks to lucky timing) dry. Vegged at home a bit, then went to the diner for supper. My appetite was its usual hearty self, and I had a great time chatting with two other regulars. Then I came home to tend the cat and unwind. I was all set to call my parents and report glowingly on my maiden chemo session, when I glanced downward and saw a red spot just over my Mediport. “Goddammit!” I thought. “Did I spill spaghetti sauce and not notice?” Except that I hadn’t had spaghetti. I looked more carefully: It was blood.

That was mildly disturbing. I shucked the shirt (with only one bit of tube tangling, a pleasant surprise). The dressing over my Mediport was peeling away from my skin—an unwelcome sight. The tubing still appeared to be intact, and the pump assured me it was pumping. I called Georgetown, and the oncology fellow on call said that, absent flowing blood, I didn’t need to hit the ER. Deo gratias! I’ll tap my newly purchased Band-Aids (which I was too lazy to return when I turned out not to need them after the Mediport installation) and secure things for the night. If all else fails, there’s duct tape.

Tomorrow morning, I’ll contact Georgetown about getting the insertion site checked and the dressing fixed. Haven’t decided if I’ll call or just show up. This speed bump irks me a bit, but then I ponder all the other things that could have happened today and gratitude settles on me like a soft, cozy quilt.

Depending on how I feel and the speediness of my dressing repair, I hope to head to the Zoo tomorrow. So far, I’ve largely felt great (well, “given the givens,” as Bill Wendt used to say). But I know from survivor friends that the rough stuff may come a day or two after the infusion.

And now off to bed, once I figure out where to place the pump so I neither crush nor disconnect it in the night. Sweet dreams to us all!




_____________________________

No matter how cynical you become,
it's never enough to keep up.

JANE WAGNER, THE SEARCH FOR SIGNS OF
INTELLIGENT LIFE IN THE UNIVERSE

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RE: Got Prayers? (Or Good Wishes?) - 6/14/2013 3:51:18 AM   
ShaharThorne


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I am still saying prayers and lighting candles for you, DC. On my front, Great aunt G has been treached(?) and will probably go to a nursing home. Doctors are giving her 2 to 6 months to live (I hate leukemia) and Mom is threatening to go see her since she got her cast off.

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RE: Got Prayers? (Or Good Wishes?) - 6/14/2013 5:27:55 AM   
KMsAngel


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sweet dreams, dc

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RE: Got Prayers? (Or Good Wishes?) - 6/14/2013 8:56:37 AM   
Rule


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quote:

ORIGINAL: dcnovice
I've been carefully saving my updates (73 pages so far!) in the hope they'll prove the makings of a book.

So contact a number of publishers already and make sure that your executor knows where to find your writings, or better yet that he has an up to date copy.

In case you are headed for death, I recommend reading "On a pale horse" by Piers Anthony.

Good luck!


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"I tend to pay attention when Rule speaks" - Aswad

"You are sweet, kind, and ever so smart, Rule. You ALWAYS stretch my mind and make me think further than I might have on my own" - Duskypearls

Si vis pacem, para bellum.

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RE: Got Prayers? (Or Good Wishes?) - 6/14/2013 10:44:21 AM   
JstAnotherSub


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quote:

So contact a number of publishers already and make sure that your executor knows where to find your writings, or better yet that he has an up to date copy.

In case you are headed for death, I recommend reading "On a pale horse" by Piers Anthony.


Or DC, you could keep your wonderful attitude and just keep on doing what you are doing.

I hope today is going well for you.



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yep

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RE: Got Prayers? (Or Good Wishes?) - 6/14/2013 2:43:01 PM   
RochesterDomme


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DC,
While its a bit apples and oranges, I have a drain because of my mastectomy. The biggest pain through all of this is the incision site for the drain. I learned very quickly to keep the tube taped to my body at the incision site. Any time my tube moves at incision site it hurts like a bitch and seeps a little blood. Not much, just enough to notice.

Also, is there a Gilda's club near you? Every club is different, but their focus is being support for people with cancer as well as friends and family.... And it's all free. The one near me has special support groups for men. Plus it's all very positive. During activities, cancer is rarely discussed. Just a group of people getting together who happen to have cancer

Best wishes to you

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RE: Got Prayers? (Or Good Wishes?) - 6/14/2013 5:54:07 PM   
MistressDarkArt


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Still cheering for you, DC :-) Your poem was hilarious!

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RE: Got Prayers? (Or Good Wishes?) - 6/14/2013 7:55:58 PM   
LafayetteLady


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You worked as an editor for years didn't you? You have the contacts, so shop your book with the last chapter yet to be written about how you feel a year or two into remission. (ignore Rule's insensitive comment). Who knows, maybe really fleshing this thing out might lift your spirits as you look at it with your "editor's eye." I want to reserve my copy now, please.

PS I'm willing to bet that someone intentionally named that drug so it's initials would be FU. Prudes won't notice, but many will take it as something they can say to their cancer.

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RE: Got Prayers? (Or Good Wishes?) - 6/15/2013 4:22:19 PM   
dcnovice


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FR

Made it through round one of chemo! Three hours of IV on Thursday, followed by 46 hours of toting a portable pump (in the dorkiest-looking case in the history of luggage). So far, all is well, and gratitude (helped by beautiful weather) has set my spirits soaring.

Friends have warned that there could be a delayed, rough reaction. Cross that bridge when I get to it.

Warmest thanks to you all! You help more than you know.

_____________________________

No matter how cynical you become,
it's never enough to keep up.

JANE WAGNER, THE SEARCH FOR SIGNS OF
INTELLIGENT LIFE IN THE UNIVERSE

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RE: Got Prayers? (Or Good Wishes?) - 6/15/2013 7:04:16 PM   
Duskypearls


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dc, you are my Hero.

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RE: Got Prayers? (Or Good Wishes?) - 6/15/2013 7:14:35 PM   
Duskypearls


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quote:

ORIGINAL: Rule

quote:

ORIGINAL: dcnovice
I've been carefully saving my updates (73 pages so far!) in the hope they'll prove the makings of a book.

So contact a number of publishers already and make sure that your executor knows where to find your writings, or better yet that he has an up to date copy.

In case you are headed for death, I recommend reading "On a pale horse" by Piers Anthony.

Good luck!



Wise suggestion, Rule, and I hope all understand and receive it in the spirit with which you meant it.

None of us knows when our last breath will be, and whether we drop the body from challenges we presently face and are aware of, or those unexpected and unplanned for, it is a good idea to make arrangements to bequeath such magnificent writings, in the event of... I think it's a splendid idea, and would be worthy of consideration even if you were in perfect health.

dc, surely you see/feel how much we all care for you, and how we love, appreciate, enjoy and admire your unusually gifted writing style. Perhaps Rule's thoughtful and well-meant suggestion will have value for you. Perhaps not.

Regardless, dc, I, for one, love you.

Diana

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RE: Got Prayers? (Or Good Wishes?) - 6/15/2013 9:26:55 PM   
dcnovice


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quote:

In case you are headed for death, I recommend reading "On a pale horse" by Piers Anthony.


We're all headed for death; it's just a question of timing.

But I appreciate the book suggestion. Thanks!

Speaking of timing, my fun fact for the night is that the Queen Mother had colon cancer and lived to be 101. Of course, I'm not sure I want to stick around quite that long!





_____________________________

No matter how cynical you become,
it's never enough to keep up.

JANE WAGNER, THE SEARCH FOR SIGNS OF
INTELLIGENT LIFE IN THE UNIVERSE

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RE: Got Prayers? (Or Good Wishes?) - 6/16/2013 2:02:12 AM   
angelikaJ


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dc,

I accompanied a friend to many chemo sessions for colon cancer.

While individual responses vary widely, I was told by the chemo nurse who attended him that FU tends to be fairly well tolerated... and it was that way for him.

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