Beating Cancer

“Tell the anesthesiologist that so they make sure you remain anestitized. I was put under at 8 AM and woke up at 7PM that night. That's how I found out that most of the time was spent just waiting around because I asked that night why it took so long.”

“I too, do read these threads and send thoughts&prayers where they are due, but don't always know what to say either. Having seen people go through this, I know what a toll it can take, on family and friends also. I appreciate hearing how people are doing, for good or for ill. Hang in there and best of luck.”

“I completely understand not knowing what to say - I find myself there as well. This bull#&%!$ hits too many people.

Rich - I plan on having a long talk with the anaesthesiologist.

Surgery scheduled for 0730 this Friday. Need to be there at 0530.”

“BIG hugs and LOTS of prayers.....”

“Glad you got in there so fast Bearmag.”

“bearmagnet, praying for you, skilled surgeon, anesthesiologist and pathologist!”

“I haven't been around much because I've been fairly busy fighting my own cancer (Multiple Myeloma, dx 01/07) but I seriously wish both of you all the best. I hope things work out for you. I still lurk here and read the few bp'ing & running threads a bit.

I completed 6 mos of VDd chemotherapy at the beginning of June. My Blood and urine tests showed me in complete remission, but my followup biopsy still showed mysterious cells. So instead of the expected "congratulations", I got put on an emergency week of D.T.PACE chemotherapy at home. This round really kicked my butt.

Funny you mention MRIs. I just had two more, one was 1hr 40 min, one was 60 min.

Last week I started 8 days of Neupogen shots, I went in for stem cell collection (apheresis) this Monday (7/2). I was told to schedule 4-5 days to get the required 6 million cells. The process was easy and comfortable.
I just took a 4 hour nap. Later, I got a call from the apheresis crew. I had given them 17.4 million cells the first day! No repeat visits, I'm on vacation until the SCT (if I do it) no doctors for 2 weeks!!!

So now I have everything ready for my autogolous SCT on the 25th. This was to be the first step in a tandem auto/allo SCT program but my allo donor (sister) didn't make the final testing, so, now anything I can do is kinda plan B...

Love the story about the AT hiker. My goal is to get well enough to do a thru hike myself.”

“SCT = Stem Cell Transplant. sorry”

“Good luck, guys!”

“Lesubtil, good luck with everything.
Bear, good luck with the surgery.

I'm having surgery Friday too. When I went down to see the vascular surgeon on Tuesday he looked at my ultrasound test and wouldn't let me drive home because he said he was afraid I'd have a stroke. Now, I'm in the hospital at Penn on blood thinners being observed until he can stent my carotid arteries on Friday. I'm stuck down here and my car is parked over in the parking garage. I didn't expect it and it sucks. At least I have a TV and there's a computer outside my room. Hopefully, if everything goes well, I'll be home over the weekend. I still might be back down here though next week for 5 days when they remove the nodule from my lung. The sooner the better, I just want to get that over with.”

“Best wishes to all you guys. That is some scarry stuff. Keep us posted.”

“I'm sorry, Le Subtil. Do you deal with the LLS Society? they have some damn fine programs. I volunteer in patient outreach.

Good Luck with your surgery, Rich.”

“RichB and BM are having surgery this morning. Please send good thoughts, prayers or whatever you do.”

“Prayers for both of you. I hope all goes well today.”

“Apparently I was done with surgery by 0930. Apparently they used a massive amount of drugs. First time I was somewhat coherent was 1030. I've been awake for a little bit now and feel..........drunk. My neck is killing me and I've had 2 percocets.

Diagnosis? "Atypical Cells".

yyay”

“And thanks for the thoughts. I'm in a weird haze.

Anyone heard from rich?”

“No, still waiting...I love atypical cells although I've spent a small fortune getting that diagnosis...of course, like you posted on the otherside, that can mean many things and I'm hoping the best for you.......I like morphine better than percosets but that's just me...once a junkie...............
last edited: 7/06/07 6:39:21 PM”

“Glad to hear from you BMag. Here's to a speedy recovery. I have been out of the loop for a while so don't really know where you or Rich are at with the problems, but hope you are both feeling better very soon.”

“MHH - yeah. lets hope for "just" atypical. I'm not enjoying the percocet trip. Think I'll wait and see how bad the pain gets.

thanks meangreen. I finished chemo april '06. Been clear since this june. not very happy about this turn of events.”

“I haven't posted, but have been sending positive thoughts your way, bearmagnet and Rich! I'll continue to do so. Please keep us posted.”

“Phuk bro, sorry to hear about that. Lets just hope it's nothing and all is still well. Was this just your 1 year check up then?”

“thanks kleetn. It was my 4th quarterly check-up. After a clear year I would have gone every 6 months. Then once a year......and I will continue this wine fest for a while...”

“Bear, glad to hear you got through the surgery okay and I hope everything works out for you. From what you wrote it sounds like you went home after surgery. I'm surprised they didn't keep you overnight after having neck surgery.

Here's a trip report of my experience for correcting the blood flow in my neck.
I arrived home Saturday evening after being admitted in University of Pennsylvania Hospital since Tuesday morning. Waiting around in a hospital room until Friday's surgery was boring, but the right thing to do under the circumstances. I was having symptoms of tingling in my hands and arms and dizziness so my doctor didn't want to risk me driving home and having a stroke. I had an ultrasound test of my neck and my left carotid artery had a stricture of 90% blockage, the right side wasn't as bad at 60 to 80%. They put me on blood thinners and at least if I had a stroke there, I'd get immediate care in the vascular unit where I was staying. Fortunately it didn't happen.

The game plan to repair this problem was to install a device called an Guidant Accunet stent system into the left artery and leave the right one alone for now since the stricture on that side wasn't as severe. Friday morning, they began at 9 AM by giving me a mild sedative in the OR, but I was awake for the whole procedure. They want you awake because of the risk of a stroke during the procedure. Because my hands had to stay at my side and I can't talk without an artificial larynx we used simple hand signals to communicate. They began by inserting the stent catheter into an artery in my groin and snaked it up into my neck just above where the stricture was. Once there, a wire mesh basket opens across the artery to catch any clots or plaques that may break off during the stent placement. That keeps them from floating upward and reaching the brain causing a stroke. Below that and in the area of the stricture, a balloon inflates and expands the mesh stent opening up the artery. I heard this happen and it sounded like a crackling sound just below my left ear. Once the stent was in place, the wire mesh basket is folded capturing any debris. The catheter is retracted and a sheath is left in place in the artery in the groin. My artery went from being 90% closed to 100% open now and it took about an hour. :)

Afterward, I was moved to a recovery room and monitored for any signs of a stroke using a Doppler ultrasound unit on various veins to check blood flow along a with examining movement of my limbs. By 3 PM I was back to my hospital room and it was time to remove the sheath from the artery in my groin and close the wound. This was the worst part. The sheath was pulled out and a doctor applied a pressure bandage and held it firmly into the wound until the artery stopped bleeding. He said it would take a half hour for the bleeding to stop and it hurt having him press into the wound. When he first pressed into it like that with the gauze, all I could think of was how am I going stand this for a half hour? It hurt for the first few seconds and I have to feel this pain for that long? :( A half hour finally passed and he released the pressure and gauze and guess what? The artery was still bleeding and he placed the gauze back on and kept pressing into it. I asked what do we do now? He said " we keep at it for another half hour or longer until it stops bleeding." I had no pain drugs for this and couldn't believe it was going to continue for another half hour and the clock was right in front of me so it was hard not to look at it. Finally, another half hour went by and when he pulled off the gauze the bleeding stopped. I was so relieved and I asked now what do we do? He said "you have to remain flat on your back for the next six hours and not move or it may bleed again." I was so happy that he stopped pressing into the wound that I didn't think about how it would feel on my back for six more hours and I couldn't wait until 10 PM when I could get up and drink and eat something. I was uncomfortable being on my back since 9 AM. By that time it was 24 hours since I ate anything and had only a few sips of water to swallow some medicine.

Finally, it was 10 PM and I raised the bed and sat there fairly still for an hour sipping water, drank two nutritional supplements and started feeling better. At 11PM, I got up and walked around the room. I was told not to walk too much so and just stood there stretching my back out before I got back in bed and fell asleep.

In the morning, the vascular team came in at 7 AM and evaluated me and said if my blood pressure remains within a certain range, the neurologist sees no change from my exam the day before, I can be discharged in the afternoon. Everything went well and I was on my way home by 3:30 PM. The nurses and entire medical staff were great and I can't say enough good things about them.

Anyone reading this is probably wondering why this happened? The answer is simple. Radiation treatment for throat cancer in 1999 caused the arteries in my neck to narrow, a long term complication called radiation stenosis. The effect is cumulative so it gets worse over time. Unfortunately, not everyone that's treated with radiation is even being told about it until a stroke and or other event happens. I was lucky and didn't have a stroke, but it was close, too close. I'm glad I was evaluated last fall before hyperbaric oxygen therapy last year by a doctor that had the foresight to listen to my neck with his stethoscope when I told him I had radiation to my neck in 1999. That's all it took to notice a problem and he sent me for an ultrasound right away, but at that time it was only 60 to 79% narrowed. Having the blood supply to your brain impeded is scary and I'm glad to have it fixed for now, but I'm wondering how long it'll be before the other side needs to be stented. For now I'm not worrying about it. I have headache from normal blood flow getting back up to the left side of my head. The arteries aren't used to normal blood flow yet, but I was told the headache should subside eventually.

Now, on to my next two problems ASAP, a wedge resection on my right lung for a nodule and another esophagus dilation so I can swallow better. Thanks to everyone for the positive thoughts and good wishes.
last edited: 7/08/07 9:41:14 AM”

“Interesting...all those blood thinners certainly contributed to the time it took for the blood to clot in that artery...mine stopped bleeding after about 2 minutes...

I'm now wondering if all that radiation affected my arteries...might explain the tingling I get around my scalp on the right side...docs never mentioned to me the possibility that radiation could cause my arteries to shrink...cool...something else to think about...or not...they never tell you all the possible things that can go wrong, do they? I can't believe that more than 6 years later I have new ill effects show up with radiation as the root cause...

Glad to hear you are home and glad the op went well...careful of that groin wound...they closed the study I joined because one lady died after developing an infection around that site and didn't want to bother the docs when she had a fever...5 years later one of my oncologists still likes to feel around those sites (they inserted one on each side at the same time to introduce the chemo to my tumor three times over a 3 week period)....hugs, Rich and hope you get out fishing again soon....”

“Thanks, I'm thrilled everything went well and to be home again. I expect to be active again soon when my headache subsides a bit. For now, I'm tired from all that went on last week. I never expected to stay down there and had no personal items with me until Thursday night. I felt like a kid opening Christmas presents when I finally got some of my things.

The doctor that was pressing on the wound said it would take longer to clot because of the aspirin and blood thinner meds. I wasn't prepared for it to take that long or closing it in that manner.

My ENT doctor knew about this complication, but never mentioned it, but from what I read, it's common to overlook it. That doctor I saw at hyperbarics was a vascular surgeon and he mentioned it right away and listened to my neck. It sucks that it happens, but I'd rather find out about it before a major event happens. It took me losing the vision in my left eye for short time before I went for my next ultrasound. That was a blunder on my part, but I was just so consumed with everything else that was going on I forgot about going for my six month ultrasound.

The best thing to do is go for a carotid ultrasound test to see where you are at now or at least have your doctor listen to your neck arteries. They can tell right away if narrowing is taking place by the sound difference. I don't know why doctors don't do this as a normal part of an exam for anyone, considering it takes only seconds and stroke is so common.”

“Thanks Rich...when I feel like throwing a few thousand dollars to Mayo again I'll do that...now, I'm staying away from doctors...I'm not sure I'd survive any sort of operation anyway so why bother..still, I like knowing what new thing could crop up and try to kill me...it's such a crapshoot, isn't it?”

“I know what you mean. Sometimes I don't know if some cancer treatments are worse than the disease itself. I know one thing after this experience...vascular problems are just as scary as getting cancer and I don't want it to happen again.”

“I'm at home today, trying to take care of myself after dragging canoes up the beach for 11 hours yesterday. I feel pretty whipped, but you guys really motivate me with your spirit. We never know what we're made of until we have to call up the strength we all have deep within. My best to you both.”

“Yeah Rich. I dunno what to make of some hospital decisions. I was a wreck. Dani tells me they were really concerned with an intense headache I had coming out of surgery. But apparently not all that concerned. I had also had some decent nausea. I think they really over did the anesthesia, maybe?

Hope you have a full recovery.”

“Bear, I just thought with neck surgery they would keep you at least one night because of possible swelling in the airway or something like that. Some people get nausea from anesthesia even if they don't get a lot. My brother is like that and just gets sick from it. I'm glad I don't get nausea from it with all the anesthesia I've had lately that's one thing I don't need.”

“I think that's why I had a drain and the surgeons instruction to my wife: 'you see any swelling and get him back in here ASAP.' I went back in the next morning so a resident could remove the drain/check the wound.

It's the first time I experienced nausea after surgery/anesthesia.”

“Rich and Bear - I'm sorry for what you guys are going through. Thanks for your updates. This thread was one of the first things I went to check on when I got back on line.

You're both awesome folk.”

“Thanks ped, but honestly, I'm anything but. I generally focus on not thinking about the worst case scenario. I can't, couldn't deal with it. I fear it too much. Right now I have to consciously shut down where this thought process would take me.

My Mothers Brother is going in for surgery on the 18th. He has rectal Cancer. She suspects he has Colon Cancer. He's admitted this to me in emails but doesn't want to tell my mom. Seems resigned that the end is very near.

She's lost a Brother and a Sister to Lung Cancer. She's had two separate Masectomies, about 4 years apart. Her other living brother has prostrate Cancer. Her Parents are long gone as is her spouse my father. His Father died of Leukemia long before I was born.

Dani's father would have died of Lung Cancer if the Hospital hadn't killed him.

They are the reasons I need to win.

If life doesn't get you cancer will?”

“Thanks Ped, I'm feeling better each day and my headache is gone. I expect to be out bike riding and hiking over the weekend. Can't wait for it to get here.”

“Please repeat:

No Cancer
No Cancer
No Cancer

I gotta go see my doc soon. I don't know how you do this, Rich. I'd kill for a drink right now.”

“Bear, good luck. I'll be in the same situation in a few weeks and I'm not happy about it. Biopsy reports have to be the most miserable things in life to have to think about.”

“Bear - You've approached this with humor and honesty and are fighting hard. Battles with this kind of thing are never pretty. You have my respect, as do Rich and Matahari. I hope I won't need any positive examples for dealing with this cancer sh-- for a long while, but if I have to go another round, I'll be grateful for you folk.
last edited: 7/13/07 11:04:04 AM”

“Just read back to Le Subtil's post from 7/4 when I was away.

Please LS keep us updated. I like having you around TT and I'm definitely rooting for you.”

“Good luck Bear.”

“it's back. Same mother#&%!$er. I'm tired. This is #&%!$ing bull#&%!$. At least it's Hodgkins, eh? I mean, that's curable. No big #&%!$ing deal.*


*Please add sarcastic/dry/irony/wit.”

“Damn, sorry to here that BM.”

“My hugs and prayers for you all.

BEAR...you have mail!”

“Bearmagnet..that news sucks...”

“Damn!!! Going to send good vibes your way!”

“Lots and lots of hugs and prayers.....”

“Bear, I was hoping to hear some good news and I'm so disappointed to hear this. I do know that you can overcome a cancer recurrence. It's not easy having to go through that all over again, but you can do it. I'm pulling for you to be completely cured.”

“Thanks y'all.

Rich - I dunno which is worst - a first diagnosis or a relapse diagnosis. It might noe even be fair to compare. Only to say it's a shock to the system. Even if you feel it might be coming. For weeks. When they took my vitals, before I saw my doc, my bp was ~130/~129. Went down to 120/100 so I didn't get shipped off to the ER. I was stressed.

And still, its a kick to the groin, to say the least.”

“That bottom number isn't so great, bear.
I have Clonidine tablets (fast acting) to take in addition to my regular high blood pressure meds if my lower number goes over 105.
You don't need a stroke to add to this!
last edited: 7/14/07 5:54:53 AM”

“Bear, very sorry to hear your news. At least you know what you're dealing with. My cancer is like that - periods of remission, but there is no cure. I'm hoping for the best for you.

I lost all of my hair last week. Some of you
know I had a long ponytail for like 15 yrs. Holy cow, do I ever look dork-ier.

My wife and I did a 10 mile day hike at Pictured Rocks early this week, the weather and scenery were fantastic. That really lifted our spirits.

I've lasted 6 months since diagnosis so far!!!”

“Step by step...inch by inch..hand over hand...day by day...minute by minute..second by second...that's how we live with cancer and other life-threatening issues....and, how we fight them...

Those who have camped with me know that I fly Tibetan prayer flags wherever I'm camping. I have not flown them in our yard until today when I raised the flags burntfoot (from the otherside) brought me from Leh, India. These send blessings on the wind to all...the colors mean this:
* Blue (symbolizing sky/space)
* White (symbolizing wind/air)
* Red (symbolizing fire)
* Green (symbolizing water)
* Yellow (symbolizing earth)

Viewed from my bed...where I've had to spend WAY to much time in:



View of them from outside:

”