Beating Cancer

“Mmmmmmmm neupogen. It's not just for Lunch

”

“I have to deal with the other end of the cancer stick every day so it is awesome to come here and see you guys kicking it's ass.

Keep it up!”

“What the hell is that BM?”

“Exactly what Nigal said.”

“That's 1cc of Neupogen. I self injected for 5 days after treatment to keep my cell counts up. I had to do it for 10 of my 12 treatments. 50 injections, 10 injections/month - You alternate locations.

I hate going to clinic/infusion/BMTx. My wife and I laugh, stay upbeat. But so many people casn't/are in such bad shape. They're hurting, their SO's are anquished.

It so #&%!$ing sucks.”

“Dang, that does suck BM. I don't know what else to say, except stay upbeat. Don't let that stupid cancer get to your spirit too. You have complete control over that.”

“post-doc: Refers to someone who has gotten a doctoral degree, but is still in training.
IRB - Institutional review board - has to approve research -
PI - usually means principal investigator, person in charge of the research project and responsible to any agencies that fund or approve it.
MUGA/CT - MUGA (I had to look this up) involves radioactive dye to get an image of the heart structure, CT or CAT scan (Computer Axial Tomography) is a way of getting a three dimension X-ray, this allows them to see generate visual "slices" of the person's body to see what is going on there.
autologous - tissue (or blood) comes from you. This insures compatibility, but (of course) usually has to be planned in advance. Although autologous skin grafts are done after the injuery.
allogenic transplant The blood or tissue comes from someone else. This often increases the chance of rejection (with skin allogenic tissue is always rejected eventually) and can carry infections in some cases.”

“A MUGA scan (Multiple Gated Acquisition Scan) is a nuclear medicine test to evaluate the function of the heart ventricles. It provides a movie-like image of the beating heart, and allows the doctor to determine the health of the heart’s major pumping chambers. The advantages of MUGA is that it is more accurate than an echocardiogram and it is non-invasive.

Some chemo is harsh on the heart. They need to know how your ticker is. I had 1 before my first battle. it gives you a dose of ~8mSv.

I forgot about that when calculating my radiation exposure since 11/05. Now I have a minimum of 106mSv's.

106mSv from 11/05-6/07 is:

35.33 years of background radiation - or -
5300 chest x-rays.

...and counting”

“My doc said she would call early this week with my bm results. Is it still early? Not to early to have a drink. At least that's What Mr. Mark convinced me after hours of debate.......

44 days since my PET
12 days since diagnosis.
last edited: 7/25/07 8:43:07 AM”

“Lots of hugs.....”

“not hearing from my doc, I called & left a message with her nurse coordinator around 3. Just got a call from the RN. She wasn't aware my doc hasn't called me yet. My doc is currently in NY. The nurse said she would call her in NY and have her contact me.

I'm not sure I can compare this anxiety to anything....”

“she called at 545. no results yet.”

“what the #&%!$? my biopsy was last #&%!$ing friday and they still ahvn't gotten the #&%!$ing results back?! God damn mother#&%!$ing #&%!$s! Monday, I'm stopping in to pay them a #&%!$ing visit. Ass licking #&%!$ing #&%!$heads!

Time for a goddamn mother#&%!$ing refill. ass#&%!$s!”

“That does righteously suck.”

“Hello, from the U of M Bone Marrow Transplant clinic! I had my transplant
Thursday. Can't eat, or do much except lie in bed. But, I'm glad to be here.

Hang in there Bear.”

“You've been on my mind lately le subtil. You hang in there too. Lots of people are pulling for you. I just know that one of these days we'll read here that you are doing just fine and healing well.”

“Can't say it any better than Creek Dancer did.”

“thanks le. How long you in for?”

“Lots of hugs and prayers!!!!!!!!!!!!”

“Le Subtil, I hope everything is going well after the transplant.

Bear, I hope you are feeling better.”

“The average time in for a auto transplant at this place is 3 weeks. But, I'm planning on beating that!
My numbers are still going down slowly. Once they bottom out, and rise again to a certain level for 2 days, I can go home. Providing of course I don't get an infection.”

“2-3wks of that food might kill you though, no?

Thanks, Rich. I can't seem to get pass the anger. I suppress it mostly. I guess I'm being a self-pitying whiny little wussy but I can't get to that "Phuck You Cancer" State of mind.”

“... I can't seem to get pass the anger. I suppress it mostly. I guess I'm being a self-pitying whiny little wussy but I can't get to that "Phuck You Cancer" State of mind.”
bearmagnet
10:31:48 AM


'Whine' all you need too. That's what we are here for. :-)”

“((((Bear))))

Ditto what Stovie said”

“Anyone who lives through one bout with cancer to go on to fight again is not a pu$$y. You vent, complain, whine (or whatever you want to call it), as much as you want to Bear. I have nothing but the highest admiration and respect for what you and others here are able to live through. I have absolutely nothing to compare your circumstances to and pray I never will (although chances are slim). The insight we all get into what it's like to live with cancer, from you and Mata, and Lesubtil and RichB, is amazing, and terrifying. You are no whiney pu$$y.”

“didja tear 'em a new arsehole yet, bear?”

“thanks y'all. I'll be leaving soon for Lombardi - gotta pick up an "order". Not sure if I have it in me to raise hell today. should have gone friday, I guess.”

“Give 'em Hell, ya Crazy Mo-fo!”

“Bear - It seems to me like you are keeping it real. I respect that. I respect that you never try to be the poster child for anything.

Too many people who are afflicted try to hard to be the spokes-model/poster child: chin up, bright smile, very nice and very inspirational. I don't think thats a helpful burden to take on - and ultimately, being real provides better information.”

“Yesterday, to mark the 50th day since my PET scan, I call the RN case manager (the doc's goto Nurse) and the research RN and ask the usual question: WTF? They didn't call back.

This morning Dani asks if I'm gonna call. I say "#&%!$ it. #&%!$ it all." Tension rises. #&%!$ing Cancer.

She calls the Case Manager and asks "WTF?" I'm at the computer, my back to Dani and there's a long silence. All I can think is "#&%!$. Maybe I'm being paranoid? #&%!$"

I turn to look at Dani. She says "There's some unanswered questions. They may have to do another biopsy."

#&%!$! What does that mean? Is there another cancer present? Did they #&%!$ it up? I would have killed to have my bone marrow clean. #&%!$. #&%!$. #&%!$.

The RN is reading the report to Dani. The look on her face is not good.

Just then my Doc calls. She starts to tell me I'm going on study. i ask about my Bone Marrow. She asks, confused, if her RN called.

I say "My wife is on the phone with her and there seems to be some "unanswered questions" regarding my bone marrow. My doc says "I think everythings OK. let me pull up the results."

Dani is off the phone, staring at me.

"Yes. Your negative. They had to perform some extra stains but everything's OK. We'll get you in her tomorrow and you'll start treatment next week."

I get off the phone and tell her my bone marrow is fine. She slides to the floor, cursing the RN, crying a little. I pour a drink.

Did you know Case Managers often know dick about Medicine?

#&%!$ing Cancer.”

“GREAT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

(not that you had to go through all that, but that it was negative)
last edited: 8/01/07 7:30:08 AM”

“Bear, one thing I've noticed is that there seems to be quite a turnover in health care. People you get used to dealing with get replaced by someone new. I think sometimes they get into a new job and like anyone would have, there's an adjustment period. I don't know if that happened in your case at all, but it's something I've noticed. It just makes it more likely to have problems and all it means is that it's more up to the patient now to make sure things are going the way you want them to.”

“That's so true, RichB.
One of my therapists just took another job. I was making good progress with him too. :-(”

“Rich - this nurse was unaware that severe itching was a symptom of Hodgkin's.”

“Cancer Patients, Lost in a Maze of Uneven Care

The first doctor gave her six months to live. The second and third said chemotherapy would buy more time, but surgery would not. A fourth offered to operate.

...It was a sudden immersion in the scalding realities of life with cancer. This year, there will be more than 1.4 million new cases of cancer in the United States, and 559,650 deaths. Only heart disease kills more people....

http://www.nytimes.com/2007/07/29/health/29Cancer.html?ei=5070&en=9172968badc105a8&ex=1186286400&emc=eta1&pagewanted=print”

“Bear, sometimes things like that happen and with a nursing shortage expect it to get worse. When I had my partial larygectomy in 1999, I was in an ENT section in the hospital, post surgery. I had one nurse that didn't know how to clean a trache tube. She was young, seemed like she just started and didn't have much time to spend between patients because they probably didn't have many nurses to go around that night. I just learned to do it myself because I'd have to do it for the next week that it would be in there anyway. Even doctors don't know everything that you think they should.
last edited: 8/01/07 9:01:48 AM”

“So worried the last Six to Five weeks. So stressed that I would have to go through chemo. That's all I thought about. I forgot what's most important. And it hit me like a sack of bricks: I haven't done #&%!$ in the backcountry since this all started in the Fall of '05. And now I'm screwed for another year.

Subtract biopsies/scans/appts, and I had a good 2.5wks to do what I really needed.

On top of that, We have two round trip plane vouchers.

Might be the biggest mistake/regret of my life. I'm a #&%!$ing idiot.”

“No you aren't bear...things happen. You are fine. We can't look back...just keep going forward. (((Bear)))”

“You can be blamed for allowing a fight for your life to distract you from an opportunity to get out into the back country.

I do hope you get another good chance. I think the a good trip into the back country has healing power. Not as much power as I wish, but real power nonetheless.”

“BIG hugs to you and Dani!!!!!!!!!!!”

“stay strong, bm”

“It's a new day! How ya feeling?”

“Thanks y'all. I'm feeling well (see TR. :D ). Went in Thursday to sign consent for the study. Did a heart sonogram/ultrasound (instead of MUGA).

Got a full body CT Scheduled for Monday.
vetoed (with help of my onco) a Mediport operation for Tuesday.

Chemo on thursday....if all goes well.

The schedule sucks but it is flexible. for now it's 1 treatment two weeks in a row (2 treatments=1 cycle), one week off, then chemo two weeks in a row. Starting 21 days after 1st round of the last cycle. That puts treatment on different days. Hope to be able to fix that.

Last treatment will be in November.

Knock on wood.”

“Knock on wood.

Isn't that what the trip report was a about? LOL!

Good luck man.”

“YGM Nigal”

“Never forget that doctor's PRACTICE medicine and they're practicing on you...

Good news, bearmagnet, but man, what a dance to get it...poor Dani, poor you....”

“as this thread easily proves.

I've been sitting on my duff, seeing too much cancer. The Lance Armstrong Foundation wants to Beat Cancer. Time to do something again. I've set a goal of raising $2,500, riding 70 miles, and have set up a team. Any other PNW TTer's interested in supporting a good cause, walking, riding or running and experiencing an awe inspiring event? Join the team "LIVESTRONG Columbia"!

LIVESTRONG Challenge Portland:
Donation Site

Want to Ride/Walk/Run LIVESTRONG
Portland 9/29-9/30? Join the LIVESTRONG Columbia Team!”

“

LIVESTRONG ARMY
last edited: 8/09/07 9:11:03 AM”

“I start tomorrow.

Gemcitabine, Vinorelbine, & Doxorubicin. And an antibody or the placebo. Yay.

Filled my scripts. Sort of. Got my compazine & Lorazepam but insurance only "covered" four Anzemet's. "Too" expensive - cost them ~240 for the 4, 35 for me.

But the bottle says "99 refills"? The drug may just be for pre-chemo. Meaning I'll only need 12 total. I'll have to straighten that out tomorrow.”

“Go bearmagnet. My prayers are with you.

Vann”