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Posted 8/26/2008 6:33 AM (GMT 0)
Hi Connie,

The tumor is actually both on the throat and the neck. It runs down the throat to the the voicebox, but also went out to the lymph node, causing a lump there. It's a busy little beaver! Working overtime to keep me from being bored. The rest of the week is filled with oncology consults - Woo Hoo!

Sleep when you can. How are you feeling? I'm afraid that I don't remember much of what I've been reading of the posts. It must be time to increase that delicious Lactulose-- Hmmmm, good!

I will be going to NYC ASAP after my local consults. I want to get my second opinion at Sloan Kettering Cancer Center. My assumption from my research is that due to the lymph node and voicebox involvement, along with the ESLD, that this will a challenge for treatment. I know that certain cancers are responding to 'silver bullet' (or 'magic bullet') drug delivery and so I hope to find a clinical trial if this cancer qualifies. I don't think the 'magic bullet' therapy is mainstream yet.

Be well, John
I think that 'random play' will select the tunes for tonight (morning)
Posted 8/26/2008 7:55 AM (GMT 0)

Hi, John.  Thanks for being so specific.  The lymph node involvement makes this a tough case.  I'm glad you are going to Sloan Kettering for a consult.  See if you can slip down to Chinatown while you're there and have some duck wonton soup for me.  Yum!

My thoughts and prayers are with you.

Hugs,

Connie

Posted 8/27/2008 4:40 AM (GMT 0)
Hi Connie,

Chinatown . . . Little Italy, it's tough. So many great places to eat in such wonderful areas. But be sure that the duck wonton soup comes up first on the menu!

Are you OK? As I said, I am not clearly recalling where you are health-wise after your last go-round. And when I try to allocate some time to go back and read some posts, it seems that the time doesn't exist right now.

It's the old STC problem: Space Time Continuum. Just when I think that I have time to do everything that I need to, the STC kicks me in the behind, reminding us that space and time intervals between events depend upon the velocity of the observer, which cannot, in any case, exceed the velocity of light, and as an observer with that velocity limitation, how can I be expected to accomplish anything?

If you even bothered reading that argument, I have a bridge in Manhattan that I'd live to sell you. It's a classic and in great shape for its age (quite unlike me).

I'm trying for an early night -- oncology consult tomorrow morning; and the CD-ROM of my CT-Scan that I need for the consult is actually blank. One more trip that I don't have time for. Well, the weather should be nice and the top will be down, so it won't be that bad.

Be well, John
Posted 8/27/2008 10:09 AM (GMT 0)
John

Want to wish you luck on your consultation this morning and hope you got some rest. I completely understand what you mean about the STC, seems I find myself going in circles most of the time even when I have a great plan to get to the finish line.

Lucy
Posted 8/27/2008 3:56 PM (GMT 0)

John, we certainly all want to know how the consult went today, if you are able to post tonight.

As for me, I'm feeling well...except for the ever-present fatigue of hep C.  How I'm actually doing will be ascertained on Sept. 9th when I meet with my hepatologist, after blood work and a CT scan on Sept. 8th.  We will be discussing possible treatment, and I am still undecided about that.  This would be a normal 3-month recheck, even if treatment wasn't thrown into the mix.  Mayo is very good about keeping a close look at my cancer status.  Of course, it's also to their benefit in following the outcome of the TheraSphere study.

Please try to post later if you're not too exhausted, brain-drained, etc.

Our thoughts and prayers are with you.

Hugs,

Connie

Posted 8/27/2008 6:26 PM (GMT 0)
Hi John, Hope you are feel well when you get a chance to read this. How much did you want for that bridge? I am in the market for one I lost my paddle also.....I feel so scatter-brained this past week. There's never enough time in a day for me either.

Thoughts and prayers for you........
Posted 8/28/2008 1:33 AM (GMT 0)

Hi John

I really think I almost bought that bridge.  I actually tried really hard to figure out what you were saying.  I was just about to read over it a second time when I got the bridge speal!!  We just got from Vanderbilt.  Long two days.  Its a 3 hour drive so we decided to go yesterday and spend the night.  Big mistake.  In case you were not aware Jerry eats several small meals a day.  It takes way too much time to stop every house and go in to a restaurant to eat food packed with sodium so we pack food.  Well it ended up taking us longer to load the car to spend the night plus all the healthy snacks then the time to unload the car when we arrived at the hotel then load again the next morning go to appointments then drive home then unload the car again.  We won't be doing that again when we go back.  Vandy has us back every 90 days.  My brain was working today so I got a lot of good info.  I'm feeling really optomistic.  Too much to right but thought I would send some good thoughts your way.  Hope today went well for you John.  Please keep us posted.

JoAnn

OH I've decided not to purchase the bridge, Thanks anyway!

Posted 8/28/2008 6:03 AM (GMT 0)
Hi all,

I apologize for bringing up the STC thing, although it is true. It's one of the ancillary concepts of Einstein's E=mc2 so we mortals are not really meant to understand it. But I am accepting bids on that bridge; cash, check, credit card, vague promise to pay, hand drawn $1,000 bill on toilet paper - at this point I'm not too picky on payment.

Lucy and PG - you can't possibly be more time confused than I. With all of the new cancer stuff, I've doubled my medical schedule, pushing all memory of everyday deadlines completely from my head. Trying to keep on top of bills, appointments and promises seems a herculean task.

Connie - I'm glad that you're feeling generally well. I know that tired thing. I'm mostly cheering your stitches to hold up well and that this time you heal completely and well. Don't overdo.

JoAnn - it's good to hear you so optimistic. Fortunately, I don't need to go far for my medical at this point so I never considered the impact of all of the meals and the overnight plans. I think you're right - simplify, simplify simplify. Keep the good news coming. Let me know if you change your mind on the bridge.

As far as my consult today, overall it went well -- but addressing the side effects left me somewhat down -- and since the cancer is treatable, I shouldn't let the little stuff get to me. I was correct in assuming that because of the tumor location, it is inoperable so radiation and chemo will be the treatment. But the location on the throat and neck means that the radiation will change my ability to taste, stop my saliva production (dry mouth) and shrink the veins around the mouth and teeth, making dental healing almost impossible due to the restricted blood flow. And because the radiation damages the throat, swallowing will be like razors in the throat for a few months. They suggest a feeding tube. And of course, the entire process will make me tired (can I be more tired?).

The taste thing I can live with; they don't know if the saliva production will be temporary or permanent; I must do all dental now and not get any cavities or damage later; and frankly, the feeding tube unnerves me. What a whiner! I'm starting to get used to this health and hospital thinking but except for my hip replacements, which weren't done in a real hospital, I've never been in a hospital for an illness or operation (the hips were more like going in to the garage for replacement parts - no blood, no rehab, walk out with no pain) . So like the Madonna song, I'm 'Like a Hospital Virgin' and am more than a little anxious.

It's almost 2 and I have workers coming to the house early tomorrow so I'll try for some sleep. I'm working on a concert setup with my friend Paul Winter so I have a new CD of his that I'm eager to listen to -- so you know what my music will be tonight.

Please be well, John
Posted 8/28/2008 7:39 PM (GMT 0)

Thanks for posting about the consult, John.  It's good you were told what you can "look forward" to.  smhair    I did give you a little warning about swallowing.  The husband of one of my best friends had throat cancer about 10 yrs. ago, and the radiation burned his throat so badly that he had to get a feeding tube.  Not a great prospect, but it's temporary.  Also great for losing any extra weight you might be carrying, though, as previously suggested, it would be a good idea to pack on a few extra before starting treatment.  BTW, the friend's husband is still alive, even after suffering a heart attack and developing IDDM (insulin-dependent diabetes mellitus.)  wink  

My first major surgeries were the hip replacements nearly 6 yrs. ago.  The fact that the left one slipped out of place 3 wks. post-op, causing another surgery in which I ended up in a body cast--well, I was none too keen on getting the rt. one done 9 mos. later.  But I don't do well with pain, and I wanted to walk.  So we do what we have to.  Whining and getting angry is allowed and normal.  After that, you get down to business and do what you have to.  Believe me, I complained about that body cast every single day I was in it--3 wks.  And then in a locked hip/leg brace for 5 more wks.  Just maintain that sense of humor, if possible, and it will take you through the whole experience a lot easier.  Also know that we are all here cheering you on and offering support.  Will they do the chemo first and then the radiation? 

Is your friend, Paul Winter, any relation to rock icon Johnny Winter?

Hang in there, my friend.

Big hugs,

Connie

Posted 8/29/2008 5:45 AM (GMT 0)
Hey Connie,

Regarding the radiation, the initial consult would have both chemo and radiation combined. From my reading, it appears that proper chemo weakens the cancer cells allowing the radiation to better kick them around. I've been doing my homework and found a less brutal radiation that is better focused, IMRT.

Sloan-Kettering and Mayo use IMRT for delicate areas. It could save my salivary glands and minimize the throat burn. Tomorrow I will try to set an appointment at SKCC in Sleepy Hollow, NY, where the IMRT therapy is done. My former dentist has recommended that I go to UConn's School of Dentistry for a full workup since I don't have dental coverage. Their residency program is supposed to be very good (and cheap, which is a must at this point).

Now it's time to meet with my transplant team and find out how badly the cancer affects my timing and placement on the list. It's frustrating that I became active on the list only weeks ago and now this. Well, I guess ESLD ain't for sissies.

No, as far as I know Paul Winter is not related to Johnny. You probably know Paul from his solstice celebrations at New York City's Cathedral of St. John the Divine. Or his recordings incorporating the songs of humpback whales and wolves. His latest project, Flyways, uses music (and local video) from 22 countries along the bird migration path from Eurasia through the Middle East to South Africa. The rough cut video and audio are amazing. Paul is attempting to coordinate a concert with my friend Jim's orchestra. Way cool!

More 'earth music' tonight.
Be well, John
Posted 8/29/2008 2:37 PM (GMT 0)
You are absolutely right John. ESLD is not for sissies! In fact you are amazing me with your attitude towards your fight with both the cancer and ESLD.

I see a closed big wooden door in front of you....with you just kicking it right down.....hollering..... bring it on!!!! ( That's the picture your handing everything has created in my head.)

I can't give you any advice about the chemo or radiation as I haven't had to deal with of it. But I am right be hind you ............giving that door a kung fu kick.

Take care and as always...........lot's and thoughts and prayers and kicks too.
Posted 8/29/2008 10:03 PM (GMT 0)

John, that would be great if you can get that type of radiation.  yeah   My friend's husband went to M.D. Anderson in TX, which is a highly rated cancer center.  However, he underwent treatment about 8 yrs. ago, so I'm sure there are newer types of radiation and chemo being used there now.

I can't really give you any advice or suggestions, as you are very smart and know how to research things, ask the right people the right questions, etc.  However, my thoughts and prayers are certainly with you, as well as my support.  wink

Hugs,

Connie

Posted 8/30/2008 2:47 AM (GMT 0)
John, I am so sorry to hear about everything that is going on with your health. I so wish you the best in your trials ahead cry   If you go to a Dentistry School talk to the finance people first thing and if possible one of the professors. I got Doug's dental done for free, all the major work was done in the hospital with an overnight stay. They wrote it up as a must for hospitalization due to ESLD and low platlets, infection risks etc. This then became a medical issue not dental, his partial dentures ended out covered by a grant through the dental school. The students of course were thrilled because it got them O.R. experience.... worth a try! Is there a Cancer Center of America in the New York area they do fabulous cutting edge work, also they have ways of helping financially. A friend of my daughter went to the one out west, they got her almost free airfare, hotel was $5 a day, provided transportation from clinic to hotel daily and were great with their treatments.

Sue

Posted 8/30/2008 6:05 AM (GMT 0)
Hi all,

Thanks so much for the encouragement -- it helps a lot. I hope that each of you is doing well.

PG - It's funny that you mention the door kicking image. Sorry to do it to you, but it brings back a story. When I first arrived in Hollywood, I was young, had no job and no clue as to where I would find one; no illusions of being a star. But I found a hotel that was on its last legs, soon to be closed, then demolished. Since no serious manager would stay, I took the job of closing the rooms, shipping the furniture out and arranging for the utilities to be disconnected. As the last days rolled around, it was boring -- an empty hotel with no guests and nothing left to do. So what came to mind? You probably see it coming: my best friend and I went down the halls and in our best 'mean guy' voices cried, "open up, LAPD!", then kicked the door in.

The first few got the better of us but once we got the knack, we quickly opened 60 doors without using the door handles. Stupid , but fun, and tiring after the first dozen or so. Sometimes life can be subtle; other times a swift, well-placed kick can open doors. There must be a lesson there somewhere. Anyway, the Hudson Hotel disappeared, tacky and forgotten.

Connie - If anyone has handled things, you have. Reading your posts about what you've endured gives me hope that I can pull this off. As Cameron said to Ferris Bueller in the pool scene of 'Ferris Bueller's Day Off', "You're my hero!".

And Sue - Thanks for the insights. So far, I haven't been able to talk with anyone at UConn that is helpful or even acts as though they like people. I hope that the insurance company will see it as a medical issue. Everything else is covered; it should be, it takes all of my disability payments to keep the insurance premiums paid. When I started building my house, I had a pretty good income; during the last 25%, I've been on this subsistence income. It's a great house, but until the market comes back around, not a negotiable item. But as PG and I agree, ESLD ain't for sissies.

The tumor pain is increasing daily so they put me on Vicodin (low dosage, only as needed) until we get started. Tonight, no rock and roll. I have a great collection of Mozart piano sonatas that I haven't played in a while. It's time. Musically, he was a playful scamp when it came to the piano. Great fun.

Good night. Be well, John
Posted 8/30/2008 8:36 PM (GMT 0)

John, was pain the first symptom of the tumor, or the lump?  I had no pain with the liver tumor, except for an occasional "twinge" in the month or so prior to surgery.

I personally prefer Rochmaninoff.  smilewinkgrin

Have a good weekend!

Hugs,

Connie

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