Beating Cancer

“Did I tell you about this event before Bear? There is free lodging for first time participants.”

“The shindig in VT? Do you have a link?”

“Crap I meant to post a link. If you go, I'll go - looks like they'd register and put Dani up for free, too. There are doing on line registrations.

http://www.stowehope.org/

BTW: There are a limited number of complementary seats available (maximum 2 per party) on Amtrak's "Vermonter" line that runs from Washington, D.C. to Waterbury, Vermont. This is the only Amtrak route on which complimentary seats are available. Some food and beverages will be provided gratis on the trip, however, if you have special dietary requirements, please bring your own.
last edited: 2/14/07 12:36:04 PM”

“check out www.livestrong.org for lots of survivor and caregiver support info.

Also:
LIVESTRONG Day

LIVESTRONG Day is the Lance Armstrong Foundation's (LAF) grassroots advocacy initiative to unify people affected by cancer and to raise awareness about cancer survivorship issues on a national level and in local communities across the country. LIVESTRONG Day 2007 will occur on Wednesday, May 16.

LIVESTRONG DAY

Todays toll. Breast, Pancreas, liver, thyroid.....”

“Last year I told you all about my sister. She had been diagnosed with CML (Leukemia). After about 13 mo's on Gleevic, her blood counts and tests were normal and she was in remission.

One month later (November) she was diagnosed with Breast Cancer. After her lumpectomy it was discovered that it had moved into a couple of lymph nodes. So, she is now taking Gleevic to keep her CML at bay and also undergoing Chemo. The Chemo actually works against the Gleevic and she is struggling to keep her white cells up at the same time they are killing them. What a challenge, eh?

Anyway, I just returned from a week spent with her. During this time her hair is all gone (after only one session) and she is neutropenic (spelling?). I went with her to her Chemo appt and met her oncologist. He is a very thoughtful and kind man who I was very impressed with. He knew what her results were and shared them with her as well as the reasons for treating her this way. He even explained some of this to me. This is a whole new game to him (CML and BC at one time)and the center she goes to for treatment.

My sister on the other hand has blown me away with her will to live life to the fullest even with these two deadly diseases. She doesn't complain and even finds humor in the most humiliating aspects.

Here is to you, Laurie, and all of you here on TT, who are ill or recovering yet still doing those things you love and not giving up. You are all my heroes and an inspiration to me.”

“WOW...now Gleevic was developed by which government agency ...Sorry, I know the pharmecutical companies can be real money whores sometime but I have a friend (15 year veteran firefighter) who was just diagnosed with Prostate cancer. He said he was in total shock and the doctor told him that 15 years ago..this would be a death sentence. Today he told him he had a 99% chance of recovery. I am certain that most of these miracles come from the very thing we are squashing...."People being allowed to pursue success".

LOL, one of the most Conservative Doctors I know was discussing Medical MJ. He ran through the gamut of "alleged studies" that it really doesn't help yadda yadda yadda..but he finished with this. "All I know is that even if in their MIND the patient feels better...it is worth ANYTHING>

One of my close friends had to deal with his father dying of Bone cancer. About six months into the disease my friend was dumping his pain to his supervisor and his supervisor said,"Hell you know where you can get some Marijuana...go get some for him."

Did I mention my friend was with the DEA????

The biggest opposition to medical marijuana is alchohol companies....(there is a Senator who is pretty big in the Scotch business...wonder where he really comes down on this?)”

“sandyann - Maybe this is a stupid question but your sister's taking Neupogen, yes? I was boderline Neutropenia after 2 chemos and my onco put me on Neupogen. kept my count at acceptable levels until after my 2nd to last treatment. The day of my last treatment, My counts showed I was below acceptable levels. Of course, I still did my last treatment on schedule because the benefit far outweighed the risk at that point.

ped - we are a solid maybe. I hope to know for sure by the end of this month.”

“Hug and love to you all!!!

I went for my second mammogram this morning. Ladies I want to encourage you all to PLEASE go and make this part of your year exam. I am such a wuss I cancelled my appointment three times before I finally scheduled my first mam. but it really isn't that bad. 5 minutes of a bit of discomfort is worth the long term results of not going at all.!!!”

“I lost a friend in our Florida koi club to pancreatic cancer last week. It turns out the port they used to administer chemo was not installed properly, so it wasn't working for her. The cancer spread to her liver and spleen, and she died quickly. The club is having a memorial get together for her soon.”

“BM - She has just been started on Neulasta. The doctor believes that will slow keep her from hitting such a low. Her blodd counts were approx 8000 when she had her first teatment. At the ten day mark they had dropped to about 600. On the Monday, for the second go around, they were back up to 4000. The Neulasta should keep the drop from being so extreme this time. We will see next Wed!”

“Hey XL, referring to your opening statement (“WOW...now Gleevic was developed by which government agency ...)

Do you think we can leave political discussion out of JUST ONE thread here? After all, we're talking about people suffering & dying, I am guessing most people on this thread aren't interested in digressing into a discussion of the benefits / risks / ROI of Gov't research vs. Private Company research, etc.

We're talking about loved one's pain & suffering. Please try to consider that in the future.

And, if you feel the need to respond to me, please do so privately via email, or on another thread. I'd rather we keep this one for people who want to discuss "Beating Cancer", not "Beating your political opponent". And, On behalf of everyone on this thread, Thanks for not polluting it further!”

“I signed up for the event at Stowe. It sounds intense, but they assigned us a nice place and a Queen Bed with a pool. Registration and some lunches for only a 50 dollar deposit which they refund if you come. I figure I'll donate the deposit - maybe more.”

“I have an appointment next week with a surgeon to discuss the lump in my arm, pick up the disk from my MRI to bring to him.

I'm told its most likely a nerve sheath tumor which is usually benign, but it could be a sarcoma. It also could be an inactive metastasis of parathyroid cancer - blood tests showed no evelevated parathyroid hormone - which is the one piece of good news thus far.”

“Hoping and praying for the best Ped!”

“thanks”

“Good Luck ped.”

“good luck, pedxing...”

“Ped, good luck with everything.”

“Thanks again - at times like these its nice to have a corner of TT like this to go to. I've been talking to my wife every step of the way, but I've been keeping it pretty quiet with most of my family.

No need to spread out the tremors from every scare. Hopefully it will be just a minor nuisance to get it out and then it will be all about putting it behind me.”

“Good luck Ped. I'm sure G-d or Eris or whoever you make sacrifices and burnt offerings to didn't bring you through hell and high water to come to a bad end. :)

Seriously man, all the best.”

“My best wishes are for your victory.”

“For a while, i was unsure as to post some stuff here. Some stuff that has struck a chord in me. I don't want to inflame anyone but it gnaws at me. I sat on a survivors panel for the local Lymphoma & Leukemia Society and spoke with patients, answered their questions. This has 3 parts, I’ll deal with the panel lastly. I also understand everyone deals differently. But maybe what I’m about to focus on is a somewhat “hidden” way to deal?

I. Pathologies of Hope
It's an article in the February issue of Harpers written by Barbara Ehrenreich. I suggest anyone dealing with Cancer check it out. It covers all the issues regarding the "Cult" of Hope & Positivity and its potential dangers.

The intro paragraph:

"I hate hope. it was hammered into me constantly a few years ago when I was being treated for Breast Cancer: Think positively! Don't lose hope! wear your pink ribbon with pride! A couple of years later, I was alarmed to discover that the facility where I received my follow-up care was called the Hope Center. Hope? What about a cure? … all the while crossing my fingers and thinking, 'F*** hope. Keep us alive.'"

"Cancer? See it positively, as a growth opportunity," and hopefully not just for the tumor. A representative of the American Cancer Society rebuffed a researcher in the mid-Nineties by saying that the organization didn't "want to be associated with a book on death. We want to emphasize the positive aspects of cancer only."

Final paragraph:

"I got through my bout of Cancer in a state of constant rage, directed chiefly against the kitschy positivity of American breast-cancer culture. I remain, although not absolutely, certifiably, cancer-free down to the last cell, at least hope-free. Do not mistake this condition for hopelessness, in the beaten or passive sense, or confuse it with unhappiness. The trick, as my teen hero Camus wrote, is to draw strength from the 'refusal to hope, and the unyielding evidence of a life without consolation.' To be hope-free is to acknowledge the lion in the tall grass, the tumor in the CAT scan, and to plan one's moves accordingly."

II. After The Tears
Breast Cancer Is a Serious Disease, but Young Survivors Find the Laughter Is Contagious

By Emily Wax
Washington Post Staff Writer
Wednesday, February 28, 2007; C01

The man in the white lab coat at Georgetown Hospital's Lombardi Cancer Center took one look at my bellybutton ring and sighed.
"You can't have your CT scan with that in there," he said.

The demand for the piercing's removal last summer was just another way cancer was trying to pry away at my 32-year-old life. But the silver hoop wouldn't budge.
That's how my husband and I ended up racing in a cab to an M Street tattoo parlor hours before I was scheduled for the test that would tell me if the breast cancer had spread. And if I would have a better chance of undergoing surgery, chemotherapy and radiation and surviving, or slogging through the treatments and possibly dying.

The parlor's electronica music spinning from a laptop seemed way too loud. The hipsters in skinny jeans and puffy boots eyeing the latest Chinese symbol tattoos seemed blissfully carefree. Amid the tattoo-splattered walls, I turned as ashen and as soaked in sweat as I would during the height of chemo as I sat down on a cold metal table. "Sweet!" purred a tattooed Burly Man, a cliche with wrench: "This trend is so over."
Me: "You have no idea."

This is the bizarre world of being young and having cancer diagnosed, when at the peak of your beauty, confidence and fertility the rhythms of your life are propelled into what we believe are the problems of the old. Total hair loss, bone pain, stomach issues, and chemo-induced menopause leave you as un-hip among your friends as, well, a cancer patient.

http://www.washingtonpost.com/wp-dyn/content/article/2007/02/27/AR2007022701360_pf.html

III The “New Normal”

When I was going through chemo angry served me well. Sure, there were moments of despair but I think that happens to most. More often, I was pissed. I wasn’t gonna lose to cancer. I told it so every day. Told it to “#&%!$ off. There’s no way I’m gonna lose to cancer.”

Last week I sat on a panel and answered questions from cancer patients. I had a hard time connecting with most of them. They were mostly interested in treatment options, doctor options, new drugs, potential herbal help, surviving long enough for better treatments.

They had a theme of a "new normal" and even asked about mine. Through all this I danced around my main thought so not to offend: Remission is defeatist. I was cancer free before. I'm cancer free now. Tomorrow, I may get hit by a car.I look both ways before I cross any street and I go for CT scans. Why worry?

Sure, I talk about Cancer and on occasion I worry. But “new normal” seemed too much. Too all encompassing. I wasn’t gonna let it run my life. I stopped worrying about every thing that felt like a symptom of old. I was cured, dammit. My Onco will be convinced of that after ~18-24 CT scans prove negative…..or sometime in 2012-14. I’m not gonna wait for that.

Anyway,

One women looked like the proverbial deer caught in the headlights. In a near panic attack the whole time and fighting tears, not ever speaking. It became worse when patients started discussing their relapses. I wanted her to hear my message, to grab her and tell her she needs to get angry. To only worry about the now and to attack it. Don't hope you're gonna be OK. Know you're gonna be OK. But she seemed too terrified. Dani, sitting in the audience could see what I was seeing in her and tried to find her after the talk was over. She was unsuccessful.

At one point she said: "that poor Women's going to die".

I still can't get her face out of my mind.

Anyway, a toast to all.
last edited: 3/01/07 8:29:15 PM”

“Hope everything turns out well, pedx.”

“breast, prostate, ovary (pounds of tumor), larynx. The toll goes on.

Pedx, prayers for you!

bearmagnet, thought provoking stuff. Keep it up.”

“Thanks again to all who post their good thoughts.

Nigal: Oddly enough, I do have some kind of faith - its hard to put into words, except that I know there is love in the world that goes way beyond me, but touches me nonetheless.

Bear: Your post has me thinking and rings some bells. If I get you right, your main point is the need to get beyond being cheery and hopeful that fate, God and/or medicine will hand you a few more years of life (I've got this image of Oliver Twist, bowl in hand, asking "Please Sir, could I live a little longer"). You need to fight, show determination and anger. There is a lot to that on a lot of levels. Anger mobilizes and energizes. The reasonable and easy goping patient often gets the shaft.

Where I may go off on a tangent from you is you get me thinking about what I might call the "cult of the poster child" and the "cult of positive thinking."

The poster child thing comes down to the idea that there is an idealized way that survivors (formerly known as patients and/or victims) of cancer and other scary things are supposed to act. Of course it is healthy to care about others and to want to turn survival into something meaningful. It's cool to be an inspiration and to have a heart warming story. Still you can lose a lot in trying to conform to some idealized identity. There are times being afraid to be an obnoxious pain in the butt hurt me. On the other hand, I've learned things about love and human connection that I might not have learned if staying alive had been easier and I want to share that. Even on TT, I'd love to be able to inspire someone else the way RichB and a few others have inspired me.

The power of positive thinking is real, but it can be over done. The EST people who suggested that all suffering was self inflicted are one extreme example. When I was in High School, I really wanted to punch this one EST guy out and ask, "whay are you doing this to yourself?" It's way to easy to think people who suffer and are miserable would all find relief if they were just to be yea-sayers instead of nay-sayers.”

“Biopsy scheduled for Monday, a week or so after that I get results. Happily the surgeon I spoke to thinks the odds are in my favor. It is probably benign, if not radiation first to shrink it and maximize the chance of getting it out without damaging the neurovscular bundle. I wish there weren't so much waiting.”

“That is excellent news Ped. Hang in there!”

“Good luck. Trust the surgeons. When they took my baseball sized neck lymph node out they said it would be about an hour. After an hour and 15 minutes Dani assumed the worst. After 2+ hrs the surgeon came out and grabbed her hand, confirming I was dead in her mind. :p

The node was all "tangled up" with my carotid Artery and Nerve. A simple biopsy became complex. But it all seemed easy for me. Don't recall any of it. :D

Sorry they're making you wait. I did get my news within an hour or so but I guess time was of the utmost essence for me. So I suppose they prioritize analysis?”

“My dear friend Maggie is fighting brain cancer, grade IV. After 15 months on chemo and radiation, they ceased treatment last summer after a series of good test results. A month ago her MRI showed the cancer had come back, but this time on the other side of her brain. She underwent one treatment of a clinical trial whereby they use an infusion drip into her brain. The next MRI showed the cancer had spread throughout her brain. So they did a biopsy and that showed the image on the MRI was just necrosis. The CT scan confirmed this. So she went from "you will die soon" to "oh, it's just dead cancer tissue".

Not sure what the next steps for her will be, but she is living now as if this deadly cancer will not kill her. I think that for her the hope that she will live to see her four young kids grow up gives her peace and serenity. My hope for her is that she will.”

“Ped, good luck with the biopsy. I will be thinking of you and hoping for good results.”

“Good Luck Ped...praying for you.

Creek, I am so sorry when a child goes through something like this. But often the child's positive attitude can be a miracle for other people still fighting.”

“Ped, I hope all goes well with the biopsy and you get a good report.”

“Thanks WK, Bear, Creek, XL and Rich.

Best wishes for Maggie WK. That makes some of the swings I've had in prognosis over the last year look minor. Sounds like she has got a good attitude. Faced with uncertainty there is no better choice than to live, to live well and to fight the disease whenever you can.”

“This is pretty cool. Raise money to beat cancer, ride the RAGBAI with Lance.

What you need to know:

- Team LIVESTRONG will be comprised of 100 riders
- RAGBRAI is a 7-day, 472 mile bike ride across the state of Iowa from west to east
- Each rider must raise a minimum of $1,000 for the Lance Amstrong Foundation. This amount includes the $125 entry fee for RAGBRAI and one LIVESTRONG cycling jersey
last edited: 3/13/07 1:02:40 AM”

“That is cool - I've never ridden in it, but last year they came through Northwood, my where my family is originally from, or my grandparents' hometown, so I got to observe it, the RAGBRAI is incredible, one of these days, I'd love to take part in it.”

“The man is doing some very good things with his fame and success. Very nice.

I had my biopsy yesterday. May take a week for results. Odds still seem to favor a benign tumor (at least 2:1 for benign). Its hard to feel that confident when checking into the "Cancer Clinic" or checking in with a surgeon at the "Orthopedic Oncology" department. It's weird that this one bugs me more than the tumor 6 years ago that made me very sick and turned out to be cancer.”

“2:1 is good! I imagine it's hard to feel confident or good after even one cancer round. I think I'd always have a nagging doubt in the back corner of my mind. My prayers are w/ you Ped. Hang in there.”

“My prayers are w/ you Ped. Hang in there

ditto that.”

“Hang in there too Ped, its tough but have faith, the medical systems in this country have made great strides in the past few years.”

“Yeah XL - I've got confidence in them. People come to the hospitals in Boston from around the world. They've saved my life twice already (with the help of some of your colleagues). Still, I'd like to give 'em a break - they have enough to do.

Thanks Sass and Path.”

“Ped, I'm hoping you get good news with the biopsy report. I hate waiting for results because it just prolongs the stress of the whole thing and delays taking action if it is cancer. For me each time I had cancer, it was agonizing knowing it's on me again. I just wanted it off me as soon as possible, even if I wasn't feeling sick yet.”

“Thanks Rich. It turns out the news was good. It was a lipoma. I should be able to have it out a week from Friday, if not then on the next Friday.”

“Great news and I'm glad to hear it! Good luck with the surgery.”

“Great news ped. Glad to hear it. What a relief. Like you haven't spent enough time in hospitals in the last few years. Btw, what anniversary is it? When we met, it didn't occur to me about your incident until I was back home. If I hadn't of known, I'd have never of known.”

“Awesome! Time to head towards one of the drinking threads, no?”

“Wooo-Hoooo! =D”

“Lipoma, YA!”

“To give us all the strength to beat the diagnosis of my 52 year old stepmother. Lung cancer, stage 3. Need to fight this fight with all our might, set aside our lives for a moment and think of what we are doing to help ourselves and each other. May these circumstances bring us all into a pool of love and understanding. That is all I ask for...just the strength to lift others up at this time, and keep them lifted.”

“You got them Wolfeyes. Please let us know if we can help in any way. xo.”

“Done, wolfeyes. Stay strong.”