Beating Cancer

“You rock Bearmagnet! Dani rocks too!! You are one tough cookie, man.”

“Sooooo...good to hear BM!!!!!!...

...and see ....I keep saying there are good women out there!!!!!!!!”

“Aww that is so sweet! You guys DO rock, congrats on kicking ass :-)”

“Bear, good news and I hope things keep going well for you.”

“Excellent new Bearmagnet! Hats off to you and to Dani.

I just did the Health, Stress and Coping section of my General Psychology course. There are a few transparencies I used in class this week and last, that show the importance of hope and social support for health in general and for outcomes after major health problems. I think having joy and comfort are essential for a healthy immune system - especially the immune system has to rise to big challenges. Being well loved helps a lot - I've seen that in my own life.”

“This thread means something to me. I was writing something elsewhere, but I wanted to put it out here, too (tears are still drying on my face as I write this):

Last night one of my sons life long friends was over. He lost his Mom to breast cancer when he was 7 and lost his Dad to a metastic tumor in his brain when he was 12. We started talking about his Mom's art (which I greatly admired) and I could see how hungry he was for memories or connections to his parents and how profound the void was that these cancers left in his life. I still cry when I remember the time, many years ago - that I was driving my sons and this boy and his brother to Chucky Cheese - he leaned his head on my son's shoulder and said "I think my Mom is going to die."
I had to pull over for a bit, until I could see again.”

“Follow up to that. I went to a memorial exhibition of her paintings after she died. I was totally blown away. The stuff she did after she first became ill had a passionate intensity that you could feel. I mentioned this to her son and he said he had her paintings stored and had no idea what to do. I want to help him get her paintings shown again - maybe for a commercial display (he could probably use the money), maybe for a showing where they won't be sold if he wants to keep the collection. He seemed vey pleased at the suggestion.

Bust my lazy procrastinating butt if I don't report significant follow up attempts within a month.”

“Thanks y'all. That's damn intense, pedxing.

At 4:18 PM the infusion pump stopped delivering the last drug into me. Difficult to describe the feeling right now. I'm drained in so many ways.

Peace.”

“Do you know who I am? I'M RICK JAAAAAAMES BEEOTCH!
bearmagnet
2:36:43 AM
4/28/06

Really and you admit it?? Wow really I heard you had aa pencil dick!!”

“Peace Bear - I'm glad you've to turn your back on that phase. I will enjoy hearing about how you recover and move on.”

“Bear, congrats man! that is such great news. A crisp salute to you and Dani. You guys allowed this to bring you closer that speaks volumes about you both. Dani sounds like an amazing lady, you are one lucky fella.

Ped, thanks for getting me choked up...I cant imagine hearing a young kid say that. It would crush me. Kudos to you for being around for him. I bet it means more to him than anyone could ever know.

mata, I LOVE the "winners circle" comment, it rocks.”

“Congrats!!!!”

“Thanks again y'all. #&%!$ing side effects suck ass! just dropped a Lorazepam. Hated it the first time I tried it but I need something for the insomnia. Also helps the Zofran (anti-nausea) out.”

“RichB - Damn. You think I would know what to say, eh? I've learned that Cancer sucks. Period. Regardless of what type you have. I don't know how many times I heard "If you had to pick a Cancer..."

Still, I do feel somewhat "lucky". At least now. People are/were amazed at how upbeat I was but what else is there to do?

Who knows what the future holds. As you may know, one of my chemodrugs causes Leukemia. How F*ed up is that? During my last visit with my Dr. I was looking through my file and flipped out when I saw my last PET Scan. I was glowing like I was positive and then some! Then I read the analysis:

1. No definite evidence for a FDG avid malignant tumor
2. Diffusely increased FDG uptake in the axial and appendicular skeleton consistent with bone marrow hyperplasia secondary to chemotherapy. While such intense activity limits evaluation of the skeleton, given this limitation, there are no discrete foci suspicious for osseous metastatases.

There's that doubt, planted in me. Bone Marrow Hyperplasia seems to be common in "younger" chemo patients. But it's compounded in my mind by several events:

My first onco Dr. assumed the Cancer was in my Bone Marrow due to the results of the first PET Scan and the degree with which it spread

My 2nd Dr. (1st Dr. didn't take my insurance) did a biopsy and found none.

My 3rd Dr. (2nd Dr. transferred out of State) said another biopsy was not necessary at the end of treatment.

Another biopsy would have put me at peace. But 100%? probably not.

So I guess we all fight. And in the end I still say, #&%!$ you Cancer, I beat your ass! So here's to you RichB, Kick it's ass and tell it to #&%!$ off!”

“Thanks Bear and cancer keeps picking me, not me picking which one I want. I never smoked a pack of cigarettes in my life and now my second bout with throat cancer is here, go figure. All cancers suck, although with bone marrow or lymph cancers you don't lose body parts. That might be the only good thing you can say about that variety. I'd rather have another bone marrow transplant than have to deal with what is coming. It won't feel or look pretty and it'll be a long process, but at least the medical science is there to build a new throat and replace a voice. I was amazed that they can do such things. I just want to get this thing done because now I'm getting sick, can barely swallow, increasing pain, harder breathing with my speech getting worse each day. Having to hang on for another 12 days is like an eternity.”

“Damn. Thank God for progress. But 12 days? that sucks! I would ask for some major pain killers/sleep aides. Lorazepam was great once I got used to it.”

“He had to wait for the plastic surgeon to get on board because one ENT doctor can't do this alone. Lots of other people are waiting in line too. So many people out there with cancer. I have some heavy duty pain drugs and expect to be using them for a long time.”

“RichB - Here's hoping you get through this in position to get as much strength and abilities as at all possible. I'm planning to celebrate your next trip report on TT.”

“RichB - I can't imagine what you're going through. I've said prayers for you. Hang in there.”

“Thanks guys, I'm gearing up to get ready for this. I ordered an electro larynx this week and it should be here Monday so I'll have all next week to learn how to use it. It'll beat having to having write everything on paper to communicate with doctors and nurses like I had to do with the last surgery when I lost my voice. That was pain and with the pain drugs I wound up scribbling a lot. This time I lose my voice for good so I'll have to use the electro larynx until I'm healed enough to where they can implant prosthetic vocal chords later on in a separate procedure. He said I shouldn't sound much different than I do now with the new chords in place. Also, I'll have to learn what life will be like as a neck breather. No more breathing through my mouth or nose so that brings on new challenges so I'm finding out what they are and how to deal with them. No more sense of taste or smell. On the plus side my eating should be better since I won't choke on food like I do now and it eliminates the risk of aspirating food into the lungs. I say should be better, but I suppose that will depend on how good my new throat will work, so I'll see about that.

Also, I'm making arrangements to donate some tissue samples of my cancer to an organization called National Disease Research Interchange. They will essentially procure, store and distribute samples for research. It is a non-profit organization that is mainly funded by the NIH, and it collects and distributes samples specifically for research on rare diseases. It was started by the parent of a diabetes patient who was
frustrated by the lack of research and resources for research. The
organization has a private donor program by which individuals can make
directed donations of tissues. Donations made to the NDRI will be available
to any researcher doing valid cancer, FA research, and so will benefit many, not
only a few. The goal is to find better treatments for head and neck cancer and eventually find a cure for this miserable disease.
last edited: 6/09/06 6:42:06 AM”

“WAIT... what did I miss?
Rich you have cancer?
damn i am soooo sorry. I had no clue.
My thoughts and prays will be with you! i am really sorry :(”

“Thanks Maple, but it's nothing new, I've had cancer a few times now since 1998. This time the treatment is just more radical than the others.”

“well you have always kept your chin up, so keep doing that :)”

“RichB, I'm really sorry to hear you have to go through with this. It never ceases to amaze me how much Doctors and the medical community can do for us. My youngest bro had 17 plastic surgeries over twenty years to build him a lower face that functions. What a blessing!
Please, let us know if there's anything we can do for you, anything at all. Maybe notes and such while you recover? If you think they might help drop me an email at joymharvey at yahoo dot com.
last edited: 6/09/06 7:18:07 AM”

“nseptoff at alo.com”

“Sass thanks, medical science is amazing and it seems like each day we hear of a new breakthrough.”

“And RichB - you are amazing!

I feel for you on the throat and swallowing, having gone through pieces of what you've gone through. I had to be on finely chopped food for a while and drank only "nectar thick" fluids. Eating was a struggle and things went down the wrong way anyways. I'm glad you have a good shot at being done with that kind of thing. I only wish the price wasn't as high.

If you need any "Thick-it" I'll mail you a big can (or two).”

“Ped, thanks for the offer for the "Thick-it" and at least I'm still able to eat regular food with a few supplements each day, so I expect to be able eat this way until I'm ready to go. It's just taking me a long time to eat, but the pain medicine helps. My goal is to not lose weight and eat normal food for another 9 days because after that I'll have a feeding tube. I'm not sure when they'll remove it since I might take longer to heal because they are cutting into radiated flesh that will not have good blood flow. That means back into the hyperbaric chamber to heal for what could be 40 days of treatments so I'm expecting to not be able to eat normal food for possibly at least that long.”

“RichB, when I read about your experiences I tremble knowing that could have been me...I would've had to go the route you are on had I not been fortunate enough to get on a study at the Mayo clinic...I had tongue cancer with a +4inch tumor. Normally it would've been surgically removed and, in my case, I would've lost my voicebox and been connected to an eating tube and breathing tube for the rest of my life. When told this the first thing I said was that was really going to put a crimp into backpacking. The study was closed after 20 patients as 2 died...pretty radical treatment but I was told last Friday when I went down to Mayo for a check up, that those of us who survived the study were doing better than those who had the traditional surgury, radiation and/or chemo treatments...I lost nothing but my saliva glands (no small thing that) and one vocal chord shut down...I've been told I AM the Bell curve for the study...

It sounds like you're going through what I was lucky to miss...you have my complete sympathy...by the way, if you have a stomach tube it's a real good way to take morphine...I do love morphine but had to kick it so I would regain my appetite and weed myself from the stomach tube...

Anyway, I know the pain you are experiencing in your throat all too well...I also think you are stronger than I ever was...remember, Scandia shakes are our friend....600 calories in a glass...that's if you can swallow....
last edited: 6/11/06 9:13:40 AM”

“I remember my feeding tube (I'm told I ripped it out a couple times when I first came out of the coma) and the weird happy feeling when it came out. But then I had to learn to eat again - it was hard.

But, now I know the reality behind "up your nose with a rubber hose!"”

“Matahari, I'm glad to hear everything worked out so well for you and my hope by donating some tissue samples is that new treatments will someday be found to benefit more patients. While not everyone would be a candidate for the treatment you had, as research continues more effective, less invasive treatments will be found. I know I would not have been a candidate for that type of treatment that you had either with my first throat cancer or the one I have now. I don't tolerate chemo or radiation well and the cancer spread too far into my neck the first time. After having radiation twice now, I'm not sure I can have more since you can only tolerate so much.

I'm not looking forward to morphine again because I broke out in an itching rash from it twice now. I asked about where the feeding tube would be placed and they said it would be the nose to stomach.”

“FYI ...and for anyone who believes in prayer... Rich B's surgery is scheduled for Tuesday, June 20, 11:45 AM EST @ U Penn Hospital, Philadelphia, PA. Supposed to take 12 hours.

Get well soon my friend ... you have lots of hiking left to do ...and more gear to make.”

“Thanks for the headsup M silver, please keep us posted. God be with him.”

“Godspeed, Rich.”

“Thanks for the update. I went back and read the last 2 weeks and had no idea what all is going on. Rich, you are in my prayers. I hope your sugery goes well.”

“Thanks for the update M.

I'm day hiking tomorrow. Will carry Rich B in my thoughts.”

“My thoughts too will be with you in your continued fight. Your words come across strongly on this board; I think they reflect the strength in your heart. Good luck and God bless.”

“Thanks for that post, Marion. I had no idea that Rich was going through this again. Aside from being one of the nicest guys you will ever meet, Rich is the toughest person I have ever known. I'm confidant he'll beat this again and be on the trail again before you know it.”

“Rich B will definitely be on our thoughts. We pray for the best outcome for his surgery.

John and Danielle”

“Thanks again everyone and I'm off to get an operation called a Laryngopharyngectomy. A long medical term that essentially means the removal of the throat and voice box. I have cancer in the back of my throat, below my vocal chords and probably in at least one lymph node of my neck. I'll lose a few more lymph nodes, half my thyroid and hopefully not much more of my neck, but as long as my doctors can stop this cancer in it's tracks I'm OK with that. They will replace my voice with a different one and even make me a new throat out a section of my thigh which is pretty awesome when you think about it. At least, I'll get some function back, it'll just work a little differently and I'm OK with that too.

I know pretty much what is coming since I've had a partial laryngectomy and a neck dissection in 1999 for my first throat cancer. I'm going to get my arse kicked and there's no good way to put it. The goal is to put up with it the pain, heal up, go through therapy to learn how to use my new body parts and get a decent remission out this treatment. I'm just going to let the doctors do their magic and hang on for the ride.

I'll be sure to post a trip report here when I get back.

Thanks again,

RichB”

“Good thoughts and prayers coming your way.”

“Best wishes Rich; I'll be looking forward to seeing you on one of the many scenic Keystone trails again sometime soon.

Get well soon, buddy.”

“Hope all goes well. Best.”

“You'll be in my prayers Rich. Your surgeons and family too. Your attitude is inspiring.”

“Be blessed and at peace, Rich. Remember the good times and plan for new ones while you're flat on your back.”

“Rich you are in my prayers. I hate the recovery from the General more than the recovery from the surgery. If you need anything let us know.”

“My thoughts and prayers are with you RichB. Hope to see you on the trail some day.”

“Hope everything goes well and wishing you a speedy recovery.”

“Rich you are in my prayers. I look forward to seeing you again on the trail.”

“Thoughts are with you today Rich. See you soon.”