I saw the pictures of my tumor today...

I have decided to call it "Bev".

It is very round and black...very scary looking. The Doctor has put off surgery yet again in lieu of more testing. I grow weary of all the tests. I want this fucking thing out of my body. Bev is not a welcome visitor and I want it dispatched. The Doctor assures me this will be the last round of tests...he better be right...I am this close || to calling all of this off...Finding a new Doctor...and getting the hell on with it!!! I am tired of all the delays.

Now, Termite is scheduled to go to Florida for a week and may not be here when I am going to need him the most. THIS SUCKS! GodDamnit! Why the fuck is this happening to me? Will Pitt get busy on that writing project we talked about. You may need it sooner rather than later.

Oh and so everyone will understand...I am going to sit in the garden for a while. I need the recuperative vibes. Sorry to post another rant...but I am damn mad and I am not sure I can take this any longer!

If there are more delays, get your medical records to another physician and get that thing out.

Best wishes with it all. I hope the Dr. and others straighten up soon!!

I know it can't be easy, but if it is not done right there could be a world of problems.

BEST OF LUCK TO YOU!

... of the radiologist's bowling ball?

That's what I'm hoping, anyway.

Hope it's nice and warm where you are, Andy. Someone sent me these hummingbird nest pics -- keep an eye out for these guys in the garden.


http://community-2.webtv.net/Velpics/HUM/

reading that you had named the tumor "bev" had me spewing iced tea almost on my keyboard. you bad!

:hug:

pass.

We're not sending you all these positive thoughts, and all this positive energy for nothing,....we're fighting for you and you need to fight for yourself. Don't give up now, you asshole. You've come too far!@

but I am afraid and scared. Now I read that the best place in the country for this surgery is Johns Hopkins. Clear on the other side of the country and way out of my price range.

I want to go there. They have the highest survival rate for the kind of surgery I need. Fuck I wish I had insurance.

;(

And now it is raining so I had to come inside.

better yet, check them out. ALL NON-PROFIT HOSPITALS COMMIT TO A CERTAIN AMOUNT OF FREE CARE. FEW GIVE IT. fight for it, man. if you want to go to hopkins, contact them, and find out what you have to do to qualify for charity care.
just btw, i have no idea what is in store for you. even if i were a doctor, i am not bill frist, and wouldn't diagnose you on the internet. but afaik, these days there is usually a good round or 2 of chemo before surgery. when you take the main tumor, others rise if you don't knock them out first.
and pitt ain't writin' nothin for you for a long frickin while.
stay tough.

You are in my prayers.God Bless!

treatment there anyway. I believe most hospitals do treat a certain number of people who have no insurance, and although I'm certain it is strictly for tax write-off purposes, does that part really matter? It wouldn't to me!

I wish you the best of luck, Andy.

but call them anyway. Where I am at , a comprehensive cancer clinic, no one is turned away if they have no insurance, That is what social services is for(my job) we find ways to help cover the cost and meet the need

I had a tumor too and I know how you feel. Once they found out I had the thing I was in a RUSH to be rid of it! I got rid of it and luckily it was benign but it was quite large, about 2 lbs. I think.

Best of luck to you and try not to freak out!

I named my tumor SOB! Was a great name for it!

tumor.

... and I mean that.



You're not alone, Bud!

:)

my knee jerk response is to get a second opinion but you are pinching pennies, the only thing that I can think of is, maybe the treatment options are different depending on the size, maybe chemo first to shrink it depending on the size, I would go to WebMD.com and read up on your condition, then I would contact the Cancer Society and see if there is a blog of people with your type of cancer that you can advice from for free, I have seen their on-line support groups advertised but that was last summer on Tv. What you have to do is not buying into anger, chill and start digging. Remember I had to wait 4 months for my surgery, this is typical for them to think like this, hmm let's carry this out to the 4th decimal place. Remember you are in all our prayers, good luck.

This indicates to me that your righteous anger, and some humor, remain through this horror. Hold on, Andy, as best you can.

ten.

Food for thought, eh?

...back then, people were dying younger, from other causes, before they had the chance to develop cancer.

take it easy.

hang in there Andy and enjoy the garden

this too will pass and if your doc is dragging his feet a bit, it seems he is confident it isn't a fast growing killer, just an unwanted pest like it's name sake

perhaps the delay is to allow you time in your garden and to learn to let things go a bit (i sure hope so)

:pals: from me to you

Nearly three years ago, I wound up at an oncologist's office.

Just before my (very challenging and frightening) divorce, bone marrow testing came back "inconclusive" for leukemia.

I lost health insurance right after that and have spent nearly three years wondering whether I might be slowly dying (especially having lived with a greater pronouncement of the symptoms which originally placed me in that oncologist's office).

I recently had blood tests. My doctor is very concerned and wants another series of tests.

At this point, I just want to be as active as possible and give my son as much as I can,...no matter what the future may bring.

I don't know whether my personal experience helps you. I just hope you know that you are not alone in such stressful experiences, and that there are many people who have compassion for your circumstances.

:hug: hang in there

and I am so sorry for what you are going through...I really understand.

:hug:

All we really have,...is eachother,...to get through this crazy thing called, "life".

Perhaps Bill Frist can figure it all out remotely, if you just send him a picture or a short, highly-edited home-made video? That seems to be his new area of expertise.

We should bombard the arrogant bastard with MRI, cat-scan and X-ray images, and DEMAND a diagnosis! After all, if he's assuming the mantle as AMERICA's DOCTOR, he can damn well treat ALL of America's patients!

And be liable for a malpractice lawsuit, should he err in his diagnosis!

Oh Divine Healer, Oh Divine Remedy is what the words mean. You might wish to visualize the tumor surrounded by white light, being shrunk by white light. I know some might think this is kooky, but my reply is-1. It doesn't cost anything to do this 2. It will not interfere or react with any medications taken 3. Better to think about the tumor shrinking than thinking of dire things happening!

My sincere regards and hopes for healing.

My sister has cancer and is currently going through chemo. I've decided to get her this journal. Thought I'd pass the idea along to you.

http://www.amazon.com/exec/obidos/ASIN/1862046964/qid=1111528772/sr=2-1/ref=pd_bbs_b_2_1/104-1931775-8142354

Although I am one of the newer posters here and am not familiar with what you are experiencing, I want you to know that I care. I think you should trust your intuition to consult another doctor! Is it possible for you to go to the Mayo Clinic or a teaching hospital? Your doctor should not resist your desire to do so. In fact, he/she should welcome the consultation. Your comment about sitting in your garden made me wish for Spring to arrive sooner than later to the Midwest. There is no sign of anything green in my back yard; instead, last week's ten inches of snow that blew into drifts along the fence is just starting to melt. Anyway, I hoped you attained a measure of peace and comfort from your garden. I expect you will receive many kind messages, emails, and calls. Please accept my best wishes even though we do not know each other.

LOL. Good one, Andy.

Great way to divert your anger. Try not to think of her though. Everything is goanna be ok.

Is it on the head of the pancreas or in the bile duct?

Thoughts and prayers are with you, it will be ok!

and is the reason my bile duct collapsed.

The surgery to be performed is a "pancreaticoduodenectomy"

"pancreaticoduodenectomy for adenocarcinoma of the head of the pancreas "

If so, this is good news in that it hasn't spread to other areas of your pancreas. I hope you will get your surgery asap. Any definitive schedule yet?

and I am worried sick.

You want the doctor to have all the knowledge they can get about "Bev" before they operate.
Knowledge is power.
You want to be staged correctly/accurately, so you can have the best possible outcome.

:hug:

but it does not make the wait any easier.

but I had chemo first to shrink the tumor.
It was 2 months from the time of my diagnosis until my 1st chemo treatment,
6 months until I had surgery to remove the tumor.
Molasses couldn't move any slower than this year. :)
Hang in there. Vent when you need to.

it -- they would not take the time for the tests or to try to be as accurate as possible about their course of action. When the tumor, growth, cancer or whatever is really bad, they rush in and remove what they can and do what they can to stop it. (My sister had ovarian cancer that was detected one day and the next day she was sent to Oschners, to be operated on late that afternoon. They removed all of the cancer, a few small tumors here and there, like on her liver, part of her colon and did a good bit of plumbing and cleaning and then repair. It was an 8 hour surgery.) Then she went through a couple of rounds of chemo and has been clean for 5 years last December.

If they are comfortable with waiting until more tests are done and they read the results, find comfort in the fact that they are comfortable with waiting.

In the meantime, focus the brillant light on "Bev" and tell her that she will not beat you and that you will have the last laugh. Its your body and you need to tell that fucking intruder bitch that you want her out. Focus your energies on making that snot shrink into that sniveling harmless creature that she really is.

Rest and focus on good things for you and on other matters that might have your attention.

My prayers are with you and all the positive energy I can muster is being sent your way! :hug:

:loveya:

The surgeons with a strong interest in treating cancers of the pancreas at Johns Hopkins include Drs. John Cameron, Charles Yeo, Kurtis Campbell, Steven Leach, and Richard Schulick.


" Since the completion of this review of 201 patients with pancreatic cancer, nearly 400 additional pancreatic cancer patients have been treated by pancreaticoduodenectomy at The Johns Hopkins Hospital. Indeed, it is likely that more pancreas cancer surgery is performed at Johns Hopkins than at any other hospital in the world."

http://pathology2.jhu.edu/pancreas/surgicaltx.cfm

has better recovery/survival rates for patients. This is a heavy burden for anyone, what would it take to get you into Hopkins?

neither of which I have.

can we get the political affiliation of any of these surgeons? Any of them rabid bush haters that may be interested in preserving the life and health of a well connected activist/author?

to see which party they've given money to. There's another site, too; can't recall the name. Perhaps others here will know.

Who is on their Board? Who heads up the Auxilary? Who donates?

Get to work, people.

Andy, if you want me to make calls, I can. B.

Georgetown in Washington, DC does TWICE the number of operations for pancreatic cancer. SO perhaps I should go there.


Shit!!!

if there's anything I can do.

and will help in any way, too.

Boy Andy, between Bev Harris and Bev the Tumor, I'm may want to ditch my name altogether. There's also Beverly LaHaye, the wife of Xtian nutball and "Left Behinder", Tim LaHaye. Aside from that Andy, my warmest wishes and prayers are with you. Kick the shit out of that motherfucking tumor and send it packing.

If I ever get a tumor, I'm gonna name it "Rove".

I know you must be beside yourself, Andy, and I wish there was something I/we could do!

You're doing all the right things! That garden is a great place to be spending your time!

:grouphug: We all love you and want you to get well soon! :grouphug:

:kick:

is when it comes to cancer diagnosis and treatment.

I understand your impatience. But please believe me, when it comes to cancer diagnosis and treatment - the more thorough the testing, the better. The more information your medical team has, the better your chances are. If there's an indication that there's something else that needs to be looked at, so much the better, as hard as it is to wait.

Cancer treatment is no picnic, and it's something you only want to go through once. You want your medical team to be as informed as possible so that they only have to go in there once and that they get everyting once they do go in.

"More tests" could work either way - either there is something else they need to look at or they need to narrow down what they are looking at so that they don't take more than they need to. More info is better.

I am sorry that you are having such a hard time and that you have to go through all this. I know how mystifying, puzzling and confusing it all is. At some point in the future you may have some insight as to why you "needed" to go through this all, but right now you can't know, you just need to let go into the process and let it heal you.

I'm not sure where you are with any spiritual beliefs, but I can tell you that for many people, there is a spiritual component to the cancer experence. For many people, going through a cancer experience changes their life for the better, in spite of it being such a difficult experience. For some, it's a beginning of a new life, setting a new course or owning life in a new way.

There are some things that you could be doing that could help you. Many cancer patients achieve remarkable results when they participate in their own healing through the practice of creative visualization, using the imagination to stimulate the immune system to fight off the cancer cells. Something like that might be a good positive use of your anger and fear, directing that energy in a way that can empower you and enhance your healing.

Another thing that many cancer patients find beneficial is to do some work on forgiveness. Some think that on a psychological level, cancer can be related to holding on to resentment and anger. Working on forgiving others who you might hold a grudge against as well as oneself can be helpful.

Just as the winter is giving way to the spring, this shall pass from you, dear Andy. Right now it requires your attention but it, too, will pass and there will be bright days for you, ahead... up there... a little ways ahead of you.



:hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug:

Johns Hopkins or Georgetown are the best bet going.

They're supposed to be really good.

we don't know each other but I look for your posts and updates on your condition from your friends. I keep you in my thoughts.

Rant all you want. Your DU friends so obviously support you and care about you.

You are doing everything just right. Hang in there.

P.S. naming your tumor Bev is perfection.

At least your sense of humor is intact.

Rant, bellow, and holler all you want. Let it out if it makes you feel more sane. Get yourself into the best mental place you can find.

I think I speak for most of us here when I say that we're in your corner, Andy.

Wishing you the very best of outcomes, Andy. :hi:

I promise you that you are not the only person on Earth having a hard time right now. I know you are in pain. I know you are anxious. The negativity you are spewing will only make it worse. It is apparent to me that you are a rightly-so, a loved and admired person on these forums. And, that they are interested in helping you. Help yourself. Buck up. It's the way it is. I'm sorry. Maybe Karma. I'm no new-age guru, but maybe channeling some of that anger into something (don't ask me what) more productive can give you some peace. We all have trials. Embrace it first and then work to beat it. Once you accept it, then you can go to work at dealing with it.

(Whoo HOO, I'm gonna get beat up!)

though "positive thinking" helps many things you can't use it as a cover for the fear and pain and anger that might come up initially.

We don't want to hold to "negative" emotion just out of habit...but the first thing we do is not judge our emotion. We allow it, observe it, acknowledge it, accept it when it comes, we don't pretend it isn't there or pent it up. It isn't a brave or positive face that is healing.

Facing our "negative" is part of finding the "positive". Judgment words of positive or negative aren't the key.

The power is in facing what is true in us now. We don't force change but we allow it. Whatever our higher power may be we come as we are to it.

And karma is always a possibility but that is not always personal karma. In these times I think a lot of souls raised their hand and were willing to take on and transmute some of the racial (as in human race) karma.

I do react strongly to this...I have seen too many people have this pushed in their face at a time of illness.

I am not a new age guru but I can tell you we don't overcome the "negative" by denying it and God/higher power is not a slot machine.

We open our hearts to peace and healing, but not by faking it.

:eyes:

nothing like telling a person with chronic illness, to suck it up, no big deal, everybody has problems.

It's perfectly natural to have feelings of depression, anger and fear going through a major life crisis like this. There is nothing wrong with that, whatsoever. Many people take antidepressants during major illness. There is nothing wrong with that either. I had a friend who did during her cancer.

Of course, she worked at generating positive feelings but reality has a way of slapping us in the face. Dealing with the full realm of emotions is the healthy, honest way. Pretending we don't have painful feelings doesn't make them go away.

of anything to laugh about right now. If I think of something, I'll be back!

Qui Tandy ruling.

White light raining on you, disenfranchising all the cells growing in the wrong precinct.

:thumbsup:


ed: sp

made me laugh!

Thanks!

It is a forum for patients run by Bernie Siegel, M.D., a cancer surgeon and founder of ECaP (a program for cancer patients that focuses on the body, mind, and spirit).

http://www.websitetoolbox.com/tool/mb/barrybittman

I also highly recommend his books to help get you through all aspects of the experience, particuarly these (a book and a tape):

Love, Medicine & Miracles: Lessons Learned about Self-Healing from a Surgeon's Experience with Exceptional Patients, by Bernie S. Siegel

http://search.barnesandnoble.com/booksearch/isbnInquiry.asp?userid=My7M8k9Bnc&isbn=0060919833&itm=1

Getting Ready: Preparing for Surgery, Chemotherapy, and Other Treatments (audio) by Bernie S. Siegel

http://search.barnesandnoble.com/booksearch/isbnInquiry.asp?userid=My7M8k9Bnc&isbn=1561706493&itm=9

My best wishes to you in this difficult time.

-wildflower

as well as any rants, fears, doubts, etc. that are healthy and normal for anyone whose health is threatened in this way. I think the journal idea is a good one.

I hope you find little pockets of opportunity to laugh at the absurd and relish the garden time. On the other hand, you've probably found that it's also cathartic to scream, cry, cuss, beat up on a pillow, etc. than to hold in your feelings of fear and outrage. Holding all that stuff in just makes things worse.

You're among friends here, so I say feel free to make contact with DU whenever you want. Like some others here have said, we don't know one another but please know you have been in my thoughts and prayers. It's gotta be really tough; I'm certainly hoping for something to clear for you to get some treatment ASAP. Take care...

Seriously, perseverance and grit, kick its ass.

It will take a while, since they were sent by media mail from Massachusetts, maybe a week or more. But they'll get there. The box isn't that big but it weighs a ton at least! It's chock full of Spring, and that's no lightweight. I sent it to your PO box.

Hang in there, Andy. We need you not only well again but in FINE FIGHTING FETTLE!!!

:grouphug:

am thinking very positively for you Andy...wish there was more I could do...hmmm...will think on that too.

:loveya::hug:
DR

Focus that energy on Bev just dissipating....

Focusing my energy on Bev just dissipating....and going away.

as to bev, maybe you can sell her on ebay?

I'm really sorry about what you're going through, Andy. It would get to anybody. You have every right to vent your feelings.

Please try to hang on...okay? Changing docs at this point might be too much stress. Maybe you should give this doctor one more chance?

Hang in there... :hug:

Tucker

Call the National Cancer Institute. If you need the number, I can track it down.

My dad is getting a bone scan this very moment; they found a nodule in his chest. Go with the 2nd opinion. Get a 3rd if you think you need to.

I am interning as a social worker at an oncology center. It might not calm you with your thoughts when your alone at night, but like others have posted, it is better to take time and explore everything. If it had to be out today, they would do it.

I know it sucks

Most doctors schedule a biopsy asap. And after the biopsy, they determine what course of treatment if it's malignant. Oftentimes, it's best to do chemo before surgery.

Have you applied for Medicaid? You may qualify depending on your income and condition.

Don't mean to sound worried, but I'd be a bit concerned about any doctor that stalls on a biopsy.

I wish the best with this.

done...

So the process is moving along. As grueling as it must be, it sounds like things are progressing.

Hang in there! Hopefully you are at least half way through it.

It'll soon be out, the 'Bev' ;-) :hug:

Before I read the text of your OP, I was going to suggest naming it "Dubya," but I like your name better!:thumbsup:

Sending massive recuperative vibes your way, Andy!:hug::hi:

just a hug and an open ear. I'm thinking about you.

:hug:

creeping upon you and doing you harm and taking away some of your freedoms. Everything that tumor is doing to you...Bush is doing to our country. That name would give you many instances to tell people just what you think of bush and compare him to that evil tumor.

Another good name would be "Termite". Actually I think that's a better name! How about a contest here on DU to pick out a name and reasons why it was chosen? You might enjoy doing that! Think about it!

Something good happens for every bad and the good of your situation is it can give you the perfect opportunity to discuss politics. You couldn't just go around telling people how bad Bush is...but if you referred to your tumor as "MyBush" or "Termite"...people would ask why...and you'd have the perfect opportunity to explain. They would be to polite to argue with a sick man.

I hope you feel a little better after your garden visit. Bless You!
I know how you're feeling and worrying. My husband and I just went through all that this winter...really puts you through an emotional and physical wringer! I posted much of the saga on another DU site and the support I got was amazing and helped us get through the whole nightmare. All the prayers helped because he had a miraculous recovery. Just never lose hope and think positive thoughts only. Viualize yourself an old man sitting in that garden and you'll be there and get to see many Democrats in the white house.

Termite is the nickname I call my partner of 18 years. I could never hate termite...he is a sweet kind and gentle man. I love him with all my heart.

He sounds like a wonderful person. I'm sure this is difficult for him too.

Good thoughts for you and yours!

You can rant here all you need to. :hi: Just try to focus on the death of THIS Bev (not wasting any spare thoughts on that other Bev, truly). I have a friend fighting brain cancer right now; the weeks between diagnosis and the beginning of treatment were awful -- everyone was praying for him, cooking for him, helping him however we could, and we're like, "WHAT'S YOUR PROBLEM DOCS? GET RID OF THIS THING ALREADY!" And this was at Houston's M.D. Anderson, the best place in the world for his type of cancer. So I can guess this stage is rough for patients everywhere.

Okay tangent now: what's growing in the garden?

Could you use any seeds? I have extras: sunflowers, herbs, a winter squash that looks pretty cool from the packet, wild arugula. Maybe the sage that's flowering gorgeously on my balcony right now if I can figure out how to harvest the seeds from the flowers. Maybe a couple of more items soon.

Sunflower seeds are particularly easy and satisfying to grow: they sprout within a week in warm weather and will smile on you later this summer while you're dealing with the effects of the Bev-killers. But they're not so precious that if you neglect it and it dies that it's anything to cry over. PM me if I can send some your way.

Love & Hugs,

Your Fan Sky in Houston

AWESOME! I have a very sunny spot they would thrive in.

Dear Andy,

Don't stifle your venting. Your instincts are good.
Thank you for your clarity of vision and generosity of spirit. We have all benefited from the work you do.
Please consider the Mayo Clinic in Rochester, MN for a 2nd opinion (or more). They will not turn anyone away. They charge by ability to pay. The wealthy (and there are plenty of those -- including the King of Jordan and his family) pay more in order to subsidize the others.
I live in St. Paul (Twin Cities) and could meet you at the airport and put you up and get you to Rochester (90 minutes away). There is also a major airport in Rochester if you have a connection (a person to help) there. I am sure that someone out there in DU Land has World Perks Miles to contribute for a ticket to Minnesota (World Perks being the frequent flyer system for Northwest Airlines which is based here), if you decide to come this way. However, I do not know whether pancreatic cancer is one of the areas of greatest experience at Mayo. I do know they are trusted and make themselves affordable. We can make it happen for you if that is what you want. If not, I hope there is someone in Georgia who can help in getting you to Johns Hopkins. E-mail me for more info if you want to pursue this option.

Best wishes,

CD

..Bev will likely press charges if she finds out about this!

so it could be any number of Bev's.

..to compile a legal team capable of suing anyone for anything!

All I'm sayin' is, watch your back, humanoids.

So I don't think she will get much. AKA Can't get blood from a turnip.

And I can relate - I have an unidentified pelvic mass (whom I call "Nigel" interestingly enough or just "The Grape" - perhaps we could get them together) and I've been doing the doctor/ultrasound/biopsy runaround for two months now. Still don't even know what the bloody thing is and, like you, I just want it GONE.

Hang in there. :hug: Best wishes to you and I will send many good vibes your way.

(some things don't bear well
logical narration, so hoping you'll forgive
the presumption of something like a poem, only
way i can get it said)

i did too, once
as desperate & angry & scared, but then

set into outraged motion
by the round black scary thing inside me

happened to see, eye-level, crawling through
a steamed summer jungle of overgrown plants

inedible okra canopy (i was the fried, the dwarfed, gone missing
sliced-in/spliced-under the medico-politico-psycho-spiced
why-me blues/conceptual-gumbo)

...happened, to see, eye-level, from on my muddy knees,

a yin-yang-shaped rain-splatter of mud
lodged deep in the poised cream-&-violet heart
of an okra flower

epiphany: that's me there - there:
"Little Mud Woman" curled asleep, dreaming
somthing better, something true, & just my own

myself at rest, beyond all worry & outrage & anger

beyond doctors, facts, probabilities, stats
false authority, mistrust, beyond
even my own desperation

self complete, in soul's
self-puzzled embrace, cast into visible shape
by a chance hard rain, post-mere-
personal-apocalypse.

Little Mud Woman survives
to this day (how could it be otherwise? :-))

& never mind, never mind & be sure
more hard rain's gonna fall
sometime, after we've dreamed & woke & fought & said
all that's bitterest true in us, or witnessed/mirrored best
we can, of all the sweetest-same, in you


Our tenderest, damn-hornery, joyous, ragged, most real selves
here, there, & everywhere - your friends
splattered up into view by the same hard rains
battering down on our common garden -
dream you anew: just you, giving you back the you
you give us, every day:
same as we're bound to do for ourselves - no difference,
here where we're scattered & splattered & gathered
in, again, each one
to each one

where all the voices stop
& vision opens

Count on it, n o w

Took me 20-some years to realize
what was Real all along :-)

:hug: (listening to Eva Cassidy "Eva by Heart")

I sent a healing vibe your way. Did you get it?

Andy, hope everything works out for you.

I hope it all works out too.

:scared:

It's going to be real hard, you're going give up a dozen or more times, and the worst parts will be shittier than you can imagine. But you've got the stuff to kick Bev's ass if you want to, and it sounds like you do. Hang in there.