Had a biopsy last week (My 13th since 1990!) and results were supposed to be in yesterday -- Called nurses several times but got no return calls, which is not a good sign. Had to take daughter to airport today, so I decided to drop in to office since I was on that side of Puget Sound. Told that although nurse was in, I would have to wait for nurse practitioner, again not a good sign (Nurses can apparently give you good news or tell you results hadn't come in, but can't give you bad news).
While I was there, Dr Haakenslash called in from somewhere to speak to me -- He had gotten results evening before and SCC was found in the high BOT, right below where it changes to mobile tongue (What I expected to hear when I went in for biopsy) -- He looked again at CT done two months earlier, but only a very faint indication, not noted by him or Radiology Doc -- He wanted an MRI, so since I was there, we got it done.
He will look at MRI and develop plan, likely submitting to Tumor Board tomorrow -- It will be surgery, with a tissue graft to cover the gaps as Chemo will only slow it down and I have already had lifetime dose of radiation.
Dunno when, or where the graft donor site will be or even whether he will go in from mouth or hack through side of throat, with his team of Cutthroats.
I'm actually relieved that it is cancer because otherwise we would all be wondering what was causing the sensitivity and ear pain (Classic symptoms, sore not healing and ear pain). Strangely, I'm starting to get used to all this.
Depending on when, I want my non-UW gastro-Doc to put in a good PEG, not that feeble, clogging one that I had last!
Oh Pete, sorry you have more to go thru ... Sometimes I wonder when does it all end .. Ya follow all the rules, go thru all of the treatments and still it comes rearing its ugly head again and again ...
Who is your doc at UW? That is where I go as well.
Well, I hope you can enjoy your holiday before setting in to motion against this latest finding. I know you will do well and we will be here sending up prayers for your fast recovery.
Pete-Best of luck to you. You've been through it before and have come out the other end again. Stay strong-we'll all be here for you.
Pete,
There have been a few recently that have opted for additional rad after they "had a lifetime of radiation earlier". I don't know what the deciding factors are, like area treated before and now, time between rad Tx's, etc but I don't think we can just brush off additional rad tx's like we we told in the past. Have you asked about this?
Pete,
So sorry that you have yet another battle to face.
You CAN get a PEG that works and and doesn't clog. Bill had such good luck with his...never had a clog or displacement issue and got over the soreness within about 4 days. I am grateful for a wonderful surgeon..I think that made all the difference with his PEG and port.
We cleaned around it every day with gauze and kept it in place with a soft ace bandage and never had infection and soreness.
Good luck to you and ask around for a good general surgeon to place this for you...makes a difference.
Deb
Pete not you too. You hang in there and give it the ole 1-2 punch...You can overcome this and beat it just to say you did it!!! I can truly immagine how you are thinking concerning your peg tube..the past trouble you have had...but this is a new start this time will be different and you can do it...Take care pete and hang in!!!
(((((((((((((((hugs Pete)))))))))))))))))))))))))
Rita, it's Dr Neal Futran, chair of the department at UWMC -- He's good!
http://uwnews.org/uweek/uweekarticle.asp?articleID=42071 David, the radiation came up the last time around with this and I have indeed had my lifetime limit -- I had a "shotgun" of XRT in 2005-6 to kill microscopic cells, so these have apparently grown since then. Last time, Doc said if we radiated again, my tongue would be a useless, brown, shriveled thing... More radiation is possible if very targeted radiation was used the first time around and not in the new area.
Deb, my first PEG, installed by a Gastro-Doc, worked fine -- It was the second PEG, installed by a Radiologist at UWMC, that was so poor.
The 'rules' are just guidelines and do not come with a certificate of guaranty!
There are a number of radiation options so don't rule that out. I had radiation 2nd time, and Jim has had the radiation seed implants which might be an option. Your donor site for the graft will likely be the front of your thigh. Mine healed very well and a year post graft it is a discoloured that people would look at and wonder what happened - but no horrid winding road scars (ya gotta look good in shorts eh?)
I know what you mean about having it identified. There is a sense of "relief" that it has been caught - obviously early - and that you weren't just going crazy. There is something about identifying the problem and taking action that is calming.
You will do great through this. As Tom R. will tell you - lots of new options and the other day someone posted something about a "cyberknife". I don't know what that is, but I know when I was diagnosed last time the lazer doctor was in on the consultation as lazer surgery was being considered.
Sounds like things are moving at a good speed and catching it early is so important. We're here for you.
Donna
Hi Pete,
What devastating news..what a bummer !!!!
So sorry to hear that you have another SCC.
You mention maybe a tissue graft which is planned for me on the section between tongue and flap on the 29th January.
The donor site will be from the inside of my cheek (mouth :-) on the other side.
Will be in touch when I am not at work as I am at the moment.
Gabriele
Pete:
Im very sorry to hear your results werent good. On the positive note, you have beat it before and can do it again. This time aroudn you know what to expect and how your body will react to treatment. Ive done it twice myself, so know its never easy. Hoping you have an easy time of it.
I checked with a Gastro-Doc and he has fairly open schedule, so I should be able to get a good PEG this time around!
Decided I will make up wrist tags for my brachycardia (so they will set the pulse alarm thresholds low enough that I can go to sleep) and my enlarged prostate (So the Pee Police will not be on my case so quickly) and of course, I will put in the ear plugs before surgery so they will be in for the noisy ICU!
Now all I need is a surgery plan and date.
Atta boy....you got control and I will be keeping an eye out for your posts...We are all by your side...Sounds like you got all the soldiers ready!!!
"No plan survives initial contact with the enemy", so the ability to adapt is a good thing to have!
S#!T Pete - so sorry to hear that you have to deal with this again.
Karen
Glad to hear your making battle plans. You are fortunate to get in easily for the Gastro surgeon. Mine has a 2 month wait for even a consult. I would gladly give you my PEG, it has served me well.
Just hoping I won't need another trach! The PEGs are not a big deal, but the trach is.
Pete,
Rotten news. PEG, trach, whatever it takes just get rid of the monster.
I just got a call (after 7pm) from Dr Haakenslash -- As expected, the tumor board agrees, and so do I, with the surgery -- It will be both from my mouth and through the side of my throat -- Tissue graft donor site will be my thigh -- Because it will affect my swallowing, I will need a PEG for the foreseeable future and a trach for the short term -- More tomorrow about when after he and his scheduler consult.
Whoo hoo..........I won the graft site prediction lottery! I too was freaked about getting a trach again, but truth is you get through what you have to. At least the 2nd time you know what to expect. Remember you can get through anything.
I was surprised at how they do a graft. It was almost as if they took off a layer of sod in a very precice rectangle, then they just covered it with a guaze type thing and let it heal in the open air. As the wound heals and the scab is removed, the gauze comes with it. Hope my description doesn't gross anyone out but it really wasn't gross to me.
Let us know surgery date. In the meantime - Hugs.
Donna
Hey Pete, sorry to hear you have more surgery to go through, but you are in excellent hands with Dr. Futran. I have been impressed with how you have managed things thus far - with humor and strength - a great combination that will surely serve you well with this next round. Let me know if you'd be up for a visit at UW; I'd enjoy meeting you in person.
Take care,
-Tricia
Tricia that is an amazing offer...It means a lot from the side of the visitees. I had someone I met here on the forum come to see me when I was in the hospital and whose husband had the same doctor as me. I know it was extremely difficult for her to do but it meant the world to me. I am always amazed at how technology can bring people together. Pete you are lucky indeed. I know you have trouble with the trach, it is a nasty thing but you can do it. Hope you are doing ok. My thoughts are with you my friend and I keep sending you huge hugs!!!
Dr Futran ... I agree, he is good
He is my doc as well.
Just got off the phone with the scheduler and the surgery will be on Dec 30th, exactly the date I had been scheduled for my prostate treatment (enlarged, not cancer) -- Barb said it will be a ten hour procedure, followed by eight to ten days in hospital (and another round of discussions as to whether they can release me with a trach still in...).
Setting up referral to Gastro-Doc for a useful PEG, not the POS UWMC gave me last time.
Hoping I can talk Dr Haakenslash into removing the hair from the graft before installing -- Really don't want hairs tickling my throat!
Luckily, I still have some plastic flies left.
Well your New Year's eve is going to suck, but other than that great news that they are moving quickly to kill the beast. Too funny about the hair on your thigh - maybe electrolosis before surgery?? I know it will go great and you will be back posting in no time.
Donna
Pete,
Now that you have the date and and the plan
you can get your shoelaces pressed for your latest adventure in C-land. Wishing you an easy time and quick recovery.
I still have my EBay food pump standing by...
Pete Hang in there and good luck and best wishes in this next battle, you are atrue Warrior. Semper-Fi Bob
PeteD, you are an inspiration to all of us and with that sense of humor you always have at hand, you will come out of this on top . Good luck and I know you are a winner.
Pete,
You're tough, you'll come through this with more strength and humor. I'll be thinking of you and I'll say a few prayers.
Thanks, guys! It always helps to have moral support for stuf like this -- Right now, this darned cold that my daughter brought from Brooklyn is giving me more grief than the cancer (at least I have pills that work for that!).
You have pills that work for a cold!!! Man that's a blessing.
I spoke (wrote) obscurely -- The pills that work are for the cancer pain (biopsy site and ear); the cold pills are not working! However, the cold seems to be getting better.
If it would help and I know alternative or holistic approaches are taken with a grain of salt but I urge you to try echinacea in liquid form. I attribute my good health post surgery and pre surgery reguarding colds to taking this gem. It really builds the immune system. That in connection with my little bottle of waterless hand soap was a winning combination...
Darn it Pete, I thought WE were on to something. You notice how I inserted me into that potentially lucrative equation?
David, if I had a cure for the common cold, I'd be glad to let the whole forum in!
Actually, RatPhooey had a sneeze and liquid echinacea was one of the non-prescription remedies recommended by various on-line rat groups -- Couldn't find the liquid stuf, but I didn't look very hard.
The common cold starts to break up after 72 hours.
i was gonna try echinacea for something or other i heard it was good for ... cannot remember what it was now ... but anyways ... then i read it is not recommended for those with high bp or was it those with arthritis ... lol i do not know now but it wasn't one recommended for me LOL, so i never ended up takin it... my case in point is even if it is a supplement or vitamin type of thing, always check if you should take it, in regards to other conditions you may have or other meds you may be taking. some are great - others can cause problems more than help, depending on you and your condition.
I went for my pre-surgery prep yesterday and nurse told me that lady with similar case to mine had worked very hard on her speech and after eight weeks had gotten into speech therapy, so I guess it will be a longer time before I start making phone calls! Good thing my cell has texting!
Dr Haakenslash wrote "Total Glossectomy" on the sign-away-your-life papers, although what we discussed sounded like a partial glossectomy, albeit perhaps large, on BOT -- I presume he is covering all the bases in case he finds more that he expects from the MRI (This didn't stand out on the CT, so who knows?). I suppose I'll know more when I wake up.
My GI Doc will install a decent PEG on Friday or Saturday, depending on hospital scheduling, using full sedation. Be nice to have a good one this time!
Got my sister lined up to come out if needed to get me home from hospital with trach -- Gotta satisfy the rules (Reading between the lines, they must be at serious risk if they send patient home with trach), but I *know* from many other surgeries that I do lots better at home than in hospital and I don't want the intermediate step of a Skilled Nursing Facility (aka sniff to the profession) and ones with respiratory techs are apparently rare). Plus, I wouldn't have the QuackPack Ratz to keep me company.
Stopped by my pharmacy to alert them to keep the lockers full of Oxycodone <grinz>.
Pete,
I am saddened that you have to go through this yet a third time. Life just isn't fair - it's one of our greatest childhood lies, I have found out, as I have gotten older.
Sometimes a sense of humor is all you can cling too and you have been remarkably blessd with that.
I pray that they get this thing once and for all and that you have a successful and lasting recovery this time.
Gary, I consider myself lucky, three bouts (or even more in future) is nothing compared to what some on this group have gone through. Life doesn't come with guarantees, but I feel that I have had a good one and this stuf is just part of it. Heck, after all this I will still have two eyes, two lungs, two arms and two legs, just to name some useful stuf that many don't have!
A hundred years ago I would already have been dead from serious burns or a fall that broke my face, so cancer's maybe just the fare I pay for a longer ride on the mortal coil.
My ex-wife's second husband has pulmonary fibrosis, plus he's had serious heart problems -- I was talking to a childhood friend who had helped nurse her mother with PF, and she said that if he was lucky, he would die of heart problems first -- Apparently, PF is a long, painful process with only one ending.
I just had my new PEG installed today, courtesy of a doc who came in on a Saturday to do it -- He mentioned that he has replaced several of UW's radiology dept PEGs because they failed -- I will mention that after my surgery when I demonstrate that the inside diameter of my new PEG is the same as the *outside* diameter of the old PEG -- I've already taken the fittings off and, if I used some lube, I would be able to slide the old PEG right down inside the new one...
It's nice to pour water in the top and watch gravity do the rest with no pumping
Also, the old PEG had a large rectangular base so the Rad Doc could put a couple of sutures through to hold it in place -- First thing the nurse practitioner did was snip the sutures and cut the base back much smaller -- Not doing so leads to infections -- New PEG merely has two tabs sticking out so it won't "fall in" and can be rotated for cleaning underneath.
They gave me conscious sedation (some thing like Roofies) and the procedure took about ten minutes -- I have a dull pain in the area, which is lessening, and a little when I bend over or cough, but as easy as the first two PEGs were for me.
I have already taken off the dang tape (and some hair) and dressings, keeping it supported with a thumbdrive neck lanyard -- The tape hurt lots worse than the procedure!
The new PEG is installed in line with the first two, so my innie PEG navel is getting longer.
Gee whiz Pete you didn't have to make it sound so easy...just kidding I am really glad it went so well for you this is a good sign! So onward to battle you go and this time armed with experience and knowledge. And of course more prayers and angels!!
(((hugs)))
Congratulations Pete and I guess Merry Christmas a little late huh?? I hope that this PEG works out for you and that you don't have any worsening pain from the surgery.
Happy New Year also in case I miss you.
Patty
Pete
Hope everything is successful at your surgery on the 30th and best wishes for a VERY speedy recovery - we will be thinking of you.
Karen
Hi Pete,
Only home for a day and back again next Sunday but just wanted to add my best wishes as well. Like all the others here I am wishing you a quick recovery. Hope to see some of your next posts again soon letting us all know how well it all went.
"Break a Leg".
Love
Gabriele
Hang in there Pete. You are very brave, much braver than I am when it comes to the PEG tube. I really like your attitude, it should act as a guide to others who are struggling.
I've got to admit that it was kinda nice to dump two cans of Nutren 2.0 (1,000 calories total) in the bag last night and set the pump going while I read for a while and then went to sleep.
Today was "Mule Kick" day, where my chest hurt in the morning, but now it's OK.
Surgery is tomorrow and I'll be back online when I can use a keyboard again -- Got my plastic flies packed!
Best of luck tomorrow, Pete. I'll be thinking of you!
Best wishes and all my good thoughts, Pete. Your fighting spirit is such an inspiration!
- Margaret
Pete,
I hope everything works out OK.
Malka
Pete I guess better late than never I wanted to chime in and wish you all the best for today...So I guess you will get this after the fact but the intent is still there...God bless and we will see you when you get back hopefully it isn't long...
Thinking of you and praying all goes well.
Pete,
I'm pulling for you and I'm sure you'll be back posting sooner than you think. I'll answer anything I think you would and I'll just sign your name to maintain the balance of the site. I assume that's OK?
We are all pulling for you Pete!! Get back here soon!
Pete, Sorry to hear this news.
Just a quick note to let you know I am thinking of you. I pray all will turn out, and you will not have to do this again.
You have truly been through enough..
Diane
Still kinda weak, but I got my laptop going on hospital DSL -- Surprisingly, it was easier this time around, even with an almost total glossectomy and a much larger donor site (Forty wire staples holding it closed) -- I guess we adapt physically more than we realize!
Pete, welcome back to the land of the living! What did they use as the donor site?
Wow what a trooper!!! Was wondering how you were doing! I hope they are treating you well and taking good care of you...It is so nice to hear from you...Keep up the fantastic work soon you will be home and recouping in the comfort of your own home and onward and upward!!!! Be good don't give the nurses too hard of a time...
((((((((((((((((((((((((((hugs)))))))))))))))))))))))
Nice to hear from you Pete!
Great to hear from you Pete - and I know you will get through whatever you have to. You have such a wonderful fighting spirit that it will help you through the tough times.
Hugs
Donna
WTG Pete!! Great to hear from you, and here's hoping you hold onto that terrific attitude. It makes all the difference in how we get through treatment.
Apparently getting out on Wed when my sister arrives and we get trach training (already had the canulla out and cleaned it myself a couple of times).
They removed all of my tongue, except one portion on left side at top of tongue base (that leaves me with some taste buds). Since the thigh donor site isn't apparently as vascular as the wrist site, they wrapped Doppler sensors around the major vein and artery, with wires hanging out to listen to the vessels. That meant that instead of sticking pins in my flap every few hours, they listened to the blood flow (and still made some sticks).
Definitely going to be a while before I can talk -- Can barely make a noise now, even with trach covered -- More swelling in throat, but the cuts are essentially over the last ones.
It is great to hear from you Pete. Early Wednesday morning here and I was thinking of sending a quick text message to see how you were going when I saw your post.
Don�t know how you manage to stay so upbeat with all that you have and are going through.
I am even having a hard time picturing what you are describing.
Even though it will be a way off let me know when you are up for a chat again.
Bet you are looking forward to seeing you 4 furry friends again !!!!
{{{{{{{{{{{{{{Hugs from me too}}}}}}}}}}}}}}}}
Hope you heal quickly and are not in too much discomfort.
Gabriele
Boy is it good to see you up and posting again!!! Glad to hear you are hanging in there. Such high tech stuff out there now. Get better soon, we missed ya!!!! Will be thinking of you and sending positive thoughts your way!
Hi Pete,
Glad to hear you are up and about but don't overdo it. Your body needs to recuperate from this. Going home Weds sounds great. How long will you have the trach? What type of training does it require? Mine is permanent so I don't know much about temporary ones but will help if I can. Hope you have a speedy recovery.
Take care,
Eileen
Very happy to see that you are back with us Pete. I can imagine what you describe, it is very close to my own surgery only they left me the very back of my tongue. I am praying for you every day and look forward to your positive attitude back amongst us.
Here's to going home on Weds - there's no place like home.
Patty
Pete
You do our sixty plus cohort proud. I am simultaneously awed at your persistence and flabbergasted by your surgeries. Great to see you posting. Pour an Ensure Plus down that PEG for me. (can't let up on David).
Keep the Faith brother
Pete
Great news to hear that the surgery is over and done with and you will be able to return home real soon.
Just the mention of traches, canullas and dopplers bring back some very tacky memories - I shudder at the thought!!!!
Take care Pete, I admire your positive attitude.
Karen
Pete, It is good to hear your news. It sounds like you are doing great. Borrow some additional strength from us if you need it.
Take care
good to hear from you, Pete. hoping that is the last time you are at the mercy of the hands of dr futran
while he is a good man, you have been thru quite enough.
please go slow and easy on the road to recovery ... men in your age bracket always seem to push it (my brother is about your age and every surgery he has i have to lecture him because he overdoes it and ends up with setbacks because of it ..) so slow down, let others tend to things for you and allow the body to heal
let us know if we may be of assistance ... otherwise we will be here thinking of you and saying a prayer for you.
take care (HUGS)
For some reason, it actually was easier than the last time -- I asked Dr Haakenslash if that is usual and he said it is not -- Kinda like winning a lottery -- Even the ICU wasn't the dim hell it was last time! He doesn't want to see me on his table again either!
Not going home Wed after all because my sister's flight from Back East was canceled for weather -- Maybe Friday -- The real problem is that the hospital sticks their neck out liability-wise if the send a recuperating patient home alone with a trach because something could go wrong fast! Don't know yet how long the trach stays in, but throat is swollen more than last time, so I expect it will be a while.
Have plenty of Nutren 2.0 on hand at home, plus 1.5 cases of VHC!
Misplaced my plastic flies so I didn't have that kind of fun.
Downstairs neighbor is having great fun feeding the rats, esp the yoghurt-covered raisin treats!
You sound upbeat which is so good to hear. Already looking for your flies to get into mischeif!
Sorry to hear your release has been delayed. Its good that the hospital isnt going to just send you home to be on your own. Yes, there is a big ice storm going on here right now.
Hope you feel a little better everyday.
Ice storm Oh my oh my Christine I hope you are ok!!!! Got all supplies needed to last a few days. Those ice storms can be very hazardous but sooooooooooooooo beautiful! I guess I don't have to tell you that!! You are fully aware and I am confident prepared...Keep warm and sit by the fire and enjoy!!!
Sorry that you have to hang out longer at the hospital especially without your flies Pete. I'm certain that the nurses are happy to have you a few days longer (you are probably the highlight of their day) and it is better to be safe. Maybe it seems easier just because you knew what to expect. Take care and rest so that you will be ready to come home.
Patty
I am enjoying myself -- Even talked the Cutthroat Team in the AM into letting me pull the last drain after one of them removed the sutures -- More difficult than I thought, but it was the last one and had been in there for a while -- Then two of them ganged up on me and removed the 40 wire staples... Getting good at cleaning the trach cannula.
I just realized there is a very positive benefit to having PEG installed before the major surgery -- They didn't put in naso-gastric tubes!! I especially don't miss the one with the three sutures through my scepula!
Glad to hear you are doing so well, keep up the great healing!!!
I agree about the PEG Pete. I hated the nasal tubes. Mine worked its way up and halfway out one night and was quite painful. The doctor finally came in about 4 AM and still refused to take it out. The staple removal is fun. I had an intern removing the staples from my leg and everytime I would say ouch he would start apologizing. I got to giggling so hard that I almost cried.
You sound as if you are doing very well. Do they have you sucking on those great little sponges on a stick yet??
Patty
Hated that one too and so did the nurses.
They always had a terrible job getting to stopper off to change bottles and flush it.
Then an x-ray around 5 days post operation showed it was too long and kinked at the bottom of my stomach. Mentioned something about my being out of proportion (first I ever heard of it !!!)
Anyway removed sutures and pulled a couple inches off the length and restitched.
Ouch� but at last the problem was resolved however as it turned out I only needed it for a few more days.
Take Care
Gabriele
Hi there, Pete.
I'm so glad to hear your "voice" on the forum. You sound like you are in relatively good spirits, which is great. I'm sure you are keeping the docs and nurses on their toes and entertained at the same time! Glad to know the PEG is working well for you, and here's to good news from here on out.
How wonderful to have you back posting Pete. You sound like you are coping fabulously, but we expected no less of you. Talk to you later.
Donna
Last time around, I would have killed for a sliver of ice; this time around I don't feel at all dry -- So much difference -- Have only had one 'sucker'.
I remember being very thirsty and they were adamant that I could not drink or suck on the green suckers because it might damage the flap. Maybe it is a good thing that you are not craving them so that your flap can heal. Is there any post surgery treatment talk?
Patty
No doubt I will be getting lots of instructions at discharge tomorrow -- Nurses are really impressed with how good the healing seems to be on throat, but I might also be the after-effects of the radiation -- My throat feels like it has some sort of bamboo armor on it under the skin!
Also, there will be a lot of outpatient visits in the near future -- Still have both sutures and wire staples in my throat seams.
Best of luck today with your release!!!!
Happy Coming Home Home Day Pete.
Hope that you get all settled in and can relax and heal in the comfort of your own home.
Patty
Pete,
It's great to see you back here again.
I hope your recovery is quick and as painless as possible.
Jerry
I am amazed at how much more quickly this go-around is healing compared to last time (and that was also a quick-healer). Plenty of pain meds, so if it isn't fairly painless, that would be my fault! This morning I discovered that I have some pain behind collarbone, heretofore not a place I've associated with OC treatment pain.
Finally got my machinery set up, the suction and ventilation stuf -- Gotta admit that the hospital setup is a lot quieter than these portable setups.
Pete,
Maybe you need your ear plugs at home also? Glad to hear you are home again. Wishing you a speedy recovery.
What I do is put on the headphones when at computer! Actually, the machinery becomes nice, white, background noise.
Donna, the graft this time was different -- On the previous one, they took the tissue from my wrist and then took skin from my thigh, covering that spot with the cheese-grater snap-and-crackle gauze -- This time they sliced my thigh open for about a foot and dug deep to harvest from inside -- When they were finished, they just closed up the slice with about 40 wire staples and no snap gauze.
I'm not exactly running up and down stairs (I live on second floor), but am pleasantly surprised at how little movement restriction has resulted from that trauma. Some decades ago, I had a ladder leg fold up on me, resulting in a short fall to the ground and a broken face -- Part of the repair required cutting into my hip and harvesting some bone marrow to "seed" the egg-shell fracture in my right orbit -- That small trapdoor into my hip caused a lot more problems than this long, meaty slice.
I'd like to take this opportunity to thank all of you who posted or PM'd your support and prayers for my latest bout with OC. I found the group waaaay back when I was being nuked for the first time, so I was essentially alone in terms of actual cancer victims -- I find that it really does make a difference knowing that a whole bunch of people whom I haven't met face-to-face are behind me, as a sort of shadow Verizon <g>.
My first surgery they did what you had this time - foot long harvest of tissue/veins/whatever - from my left thigh. My 2nd surgery I had the graft from my right thigh directly to my tongue - they did not use my forearm as a "middleman". I didn't find that either of those contributions from my legs bothered me much at all. My first C section I remember being soooo worried about the metal staples - but I've learned they truly are nothing at all to worry about.
Thrilled to hear you are recovering well.
Donna
Pete:
It really does make such a huge difference having an extended family. Just knowing you have people out there who really do care is a nice feeling. Thats what I love about OCF, its even better than family cuz we are all in the same club and truly understand.
Someday I hope you have the opportunity to meet some OCF members in person. Ive had the pleasure of meeting several members and am very proud to say they are my friends.
Hope you feel alittle better everyday.
Pete,Hope all goes well in your recovery from all this and remember that we are one big happy family here. Semper-Fi Bob
Pete,
I agree about the PEG. I had a nasal tube but somehow managed to pull it out in my semi delirium. I was on a soft diet and found lifting the spoon to my mouth very tiring for a while. I believe that if I had the PEG my nutrition would have been better thanfrom self feeding. I know that I did not drink as much fluid as I should have. Being home is much better especially as I am getting the royal tratment with home made food.
you sound like you are in good spirits...keep up the good work Pete...keep up the good work
Pete you sound like you are doing well. I am happy that I can be part of the network supporting you.
Patty
Pete, I'm so glad you're back home and doing as well as you are. You are always a font of info and entertaining, to boot! Your outlook on life is an inspiration.
Lori
Thanks, Lori -- I try to be useful in a number of ways -- Life is a participation sport and the more info we spread around, esp about stuf like OC, the better off we all are.
Just a quick note to say hi as I have not been online this last week.
Wondering how you are progressing with all your healing. Still attached to all that white noisy machinery??
Gabriele
Healing is coming along about as well as can be expected -- Still have all the machines, although the air mister is making me quite chilly -- The suction machine is very useful! Hope I can get rid of this trach pretty soon -- Doc wants it in there in case anything goes wrong and I do see that the throat swelling is going down a lot slower than with the previous surgery, so I will continue to defer to his judgement -- Followup visit tomorrow.
Wow Pete being submissive there's one for the books. Just kidding I am glad you are listening to the doctors. I am also glad to hear you are doing ok...Getting better and stronger every day. I am just for the record proud of you. Keep up the good work and soon you will be sans trach and sans machines. You'll have to hum yourself to sleep. But this is a good thing..Take care
Must have caught him with just the right amount of meds Dianne.
Glad to hear that you are getting stronger Pete. Keep it up we really need your input here.
Patty
Nice to hear you are following doctors orders. Sounds like good progress is being made. Swelling after surgery can be expected. Unfortunately it never seems to go away as quickly as we would like. Be careful with the swelling, it can also be a signal for an infection. Glad you are seeing the doc tomorrow, they will check it out to make sure your doing ok. Hope you have a good check up.
Hows the critters? Did you replace the expired one yet?
The nurse took another six 60cc syringes of fluid out yesterday. We are watching carefully for infection, but no signs beyond the fluids.
The visiting nurse assigned to me is a good one.
I won't replace the expired critter -- Bringing a new one into the colony is really asking for new diseases and it's especially difficult when all are males -- That's why I wanted to start with four of them.
Pete
That is quite a bit of fluid! Happy to hear that you have a good visiting nurse and to know that someone is helping to look after you.
Are the critters in cages or do they have something more like a real rat home?? Just curious - I have never known anyone with rats before.
Have they said when you can get rid of the trach?
Patty
Wow 60cc....but glad to hear you seem to be doing well. Lots of people out here obviously care for you and wish you a speedy recovery! Get well
-Steve
Pete
Are you feeling ok? Good thing you like your nurse, that always makes things easier. Is that amount of fluid a normal amount?
Hope you feel better everyday.
I have no idea if it is normal, but as long as it's not infected I don't care much -- It was ten of those big syringes full so far!
Rats are in a nice, multi-level cage in my bedroom with ramps between levels,
http://www.martinscages.com/images/full/h-600hr.jpg doing their rat stuf at all hours of day or night -- They have short sleep-awake cycles, unlike hamsters or G-pigs -- I try to keep a bunch of stuf in their cage to keep them busy, but sometimes have to weed out the noisy stuf if they start throwing it around -- It's amusing to watch them sorting out dominance difficulties -- The smallest, but most curious and pushy, rat has been licking the back of my hand which I take as a sign that it knows I am sick.
You are probably right Pete. Animals know when we are sick and they can read our emotions too. My dogs do some pretty strange stuff when I am feeling sad that makes me laugh and my female "tends" to me by licking my hands and following me everywhere when I don't feel well. The rat cage is pretty cool. I am assuming that they are not real big, only a couple of pounds each?? They must eat a lot if they are active most of the time. It would seem that they would burn a lot of calories. Do they play with special rat toys, those balls with bells made for cats or just anything??
I hope that the swelling in your leg is starting to go down and that it stays uninfected. Does your nurse come by daily? Keep resting and taking care of yourself and you will be back on your feet soon. Thinking of you.
Patty
Hi Pete,
I don't know how I missed this thread!! I'm sorry I wasn't there to wish you well. Sounds like your spirits are good and that is important!! That sure does sound like a lot of fluid..you're right. Who cares if it normal or not...as long as no infection.
Nurse has been coming by every day at first to be sure I was doing everything right, then switched to every couple of days.
I just make up stuf for the rats to play with, cardboard boxes, etc., plus a hanging basket they can all sleep in. I may get one of those traveling balls.
Glad to hear that the nurse thinks that you are doing well enough for some alone time. There is nothing worse to me than to have someone hover and keep me from doing my own little routine. Do you think that you will get the trach out soon or do you still have a lot of swelling in your neck?
I am surprised that they all sleep together and in a hanging basket. I would have thought that they were more independent and that they would sleep on the floor of the cage. Interesting. It would be fun to make them one of those models that they make prior to building an office complex and let them play in that. The one at the county office I was at yesterday has little trees, cars and all kinds of miniature things that they could play with. Be sure to let me know when the little one stops licking your hand and no longer thinks that you are sick.
Rest up and enjoy the weekend. I hope that your weather is nicer than mine.
Patty
Hi Pete,
You must be doing OK if the nurse is now coming every 2 days?
Continue to improve and enjoy the entertainment provided by your furry friends.
My feathered friend had lovely holidays with me until last week when I returned to work. With all 3 seperate trips taking my Mum and Dad he enjoyed the car trips sitting in the back with Mum (81) where they both entertained each other
Cheers
Gabriele
I'm guessing that the doc wants to leave the trach in as a precaution against something bad happening -- I will rely on his judgment (He does 2-3 free flaps a week; I do 2 per lifetime).
For some reason, this bunch of rats prefers to sleep on the highest shelf, rather than the bottom. With a previous group of females, I bought a couple of finch baskets and hung them high -- If warm weather, they would each sleep alone, but if cold, they would all squeeze into one basket -- Amusing to sometimes see three tails hanging out of three baskets!
So, instead of a "Three dog night" it's a "Three rat night"?
Just returned from followup visit and some bad news -- Nurse had smelled infection and put me on anti-biotics, but it seems that part of the blood vessel system in the front of my flap has failed and some of the flap was dying -- She excised a lot of of the "mobile" flap, about a third of that part of the tongue, right down to the floor of mouth, leaving a large crater all the way back to the molars on one side -- Plan is to leave it alone and see how it grows (apparently thigh flesh rejuvenates well).
With my body no longer trying to salvage the bad area, the rest of the healing should improve rapidly.
[quote=Pete D]With my body no longer trying to salvage the bad area, the rest of the healing should improve rapidly. [/quote]
Pete,
So sorry to hear about the set-back. But leave it to you to turn a negative into a positive!
Here's wishing you a speedy recovery.
Smooch the little critters for me! (Oh yeah, one for you too!!)
Sending all good thoughts to you for prompt and complete healing.
Donna
Pete,
That is the sort of news nobody wants to hear at any time, let alone after what you have been through.
I hope the antibiotics do what they are designed to do and destroy any infection as soon as possible.
Take care
Karen
Pete I am so sorry that you have had a set back. You have the best attitude. I certainly hope that your body will now heal faster and that the flap does rejuvenate quickly. Please take care of yourself and rest. I have grown quite fond of you and the rats.
Patty
Hope you heal rapidly as you predicted. Was surprised to read that the thigh flesh rejuvenates where as the flap from the wrist does not.
Always learn something new here.
Take care and get better soon.
Gabriele
Rejuvenation is a conclusion on my part, based on stuf I was told, not a fact gleaned directly from what they've told me or that I have read. They used the word "granulation" a lot when talking about the now-exposed areas of flap and floor bonding with the rest.
I also recall hearing the word granulation used for the issues I have between the tongue and flap. A few smaller operations over the last 2 years to repair with another in 2 weeks.
With me it is a minor problem not like what you have been through.
The granulation might just mean that the surface skins all form and bond together to form one continuous skin across it all, even with the donor skin now removed.
There was one longer piece left in there trailing down my throat and annoying me when it got caught in my breathing -- Doing a juggling act with mirror, flashlight and scissors, I finally managed to cut it out -- Tough stuf, even with sharp scissors!
Pete, as always my good thoughts are with you. You make me laugh--2 free flaps per lifetime is my husband's goal too. #2 will be on Monday. And now you're even doing your own surgery!! Ha! Keep smiling, Pete. We have 2 little ratties at home too. They are my daughter's, so guess who usually takes care of them?
Lori
Pete hopefully you are feeling a little better today especially without the skin bothering you when you breath. Although the image of the flashlight, mirror and scissors did give me a little chill. It may be too early to tell, but do you feel any better since the part of the flap that was not successful was removed? I hope that you start to feel stronger quickly.
Thinking of you and the rats. Is the little rat still licking your hand?
Patty
RatPhooey's still licking my hand, but he might also think there's food involved! Aren't they social little beasts?
Part of excess material still hanging down and it really irks me that I can't get to it -- Nasal breathing is working, so the excess stuf sort of gurgles in the wind... I did some clean-up clipping on the first flap also because it was interfering with use of my toothbrush and fluoride trays.
Flashight & scissors !! Trying to picture you performing your own surgery. Brain surgery next ???
BTW I have found using an electric toothbrush since surgery to work better for me.
Pete
You are as tough as nails to be clipping yourself like that. Does your doc know about your scissor habits? Please be careful, sounds pretty risky. I use a waterpik, works great to get everything out of the creavices.
You got yourself a nice pet. Sure hope he isnt licking your hand just seeing what you taste like. Heard a gruesome story a while ago about how a cat will eat their owner when they die, but a dog will lay down with the deceased owner and guard them. Sure hope that its not true, I have 2 dogs and 2 cats.
Hope you are feeling ok and doing ok with your recovery. I had wondered why you hadnt posted muhc, sorry to hear you had some problems. Please rest and be a good patient so you heal.
Yes, nurse is aware of auto-surgery, although she doesn't exactly approve <g> -- Actually not that difficult because there are no nerves connected and the bad parts are obvious -- What was happening is that some of the bad stuf had stranded and the thin end was dangling in throat, giving me a constant choking feeling, which is not conducive to healing sleep -- I could suck it up into the suction wand and then grab it with one hand while I snipped it with the other -- There were still some large, tough chunks in there but is much better now.
This is NOT water pik stuf, but much larger stuf still firmly attached on one end -- The total area that went bad is about the size of a dead mouse.
Rinsing well with saline solution so as little pieces die and slough off, they will be rinsed away.
I have been using a sonic brush for some years now and the tooth-cleaning lady at dentist is quite pleased with results.
Christine, if you die, your cats won't eat you because the dogs will guard you (and not be tempted to eat you if the cats are stupid to hang around looking like dog treats!).
I keep forgetting to mention that the Rat Guys (aka the Quack Pack!) are also benefiting from the post-surgery care stuf -- The trach care kit comes with a partially absorbent pad that is intended to set up as a work space on a patient's bed -- Since I don't use the pad, I give it to the rats to put on their sleeping shelf and they really seem to like it, taking a lot of time adjusting it to fit the space, fluffing it up for warmth, etc. -- It gradually deteriorates, so it can go in with the rest of the stuf when I change the cage litter (I put it all in a large plastic bag and will take it to transfer station for deposit on composting pile -- They also have you put shredded paper in brown paper bag and put that on the compost heap).
BTW, major milestone today -- Each of the rats let me pick them up without fuss, carefully watching each other as I did it and then getting treats afterward.
Their personalities are coming out, with RatPhooey, the littlest, seeming to have the most attitude, RatHuey the medium size being a typical male (both are white with beige and dark brown hoods, smooth hair) and RatDewey, the largest, being very laid back and gentle (not a food-grabber like the first two), with a dark brown hood but some rex (curly) fur and whiskers.
RatDewey is definitely Lap Rat material, good for sitting on lap and petting while watching DVDs or whatever.
I have 7 cats and 1 dog. I'm in trouble.
So now I have this visual of the RatPhooey, the Lap Rat watching DVD's with you. At what age do their personalities start to come out or do they start to show more personality because you spend more time with them, handling them and such? What type of treats do rats eat anyway?? Please don't give them any Carnation VHC.
Glad that you sound like you are feeling better.
Patty
RatPhooey is maybe a bit too active to be a LapRat -- It may be a while before he settles down -- Always picking fights with RatHuey and the two of them bang around the bottom of the cage like you wouldn't believe in these very fast mock battles, kinda like an Oriental fight video where you can't see what's going on unless you film it and slow it down.
RatDewey is the Lap Rat -- I need to weigh these guys -- So far only RatHuey, at 10 oz.
The personalities are there from the start, but somewhat covered by the initial shyness -- I've had the best success when I was able to get them as just-weaned ratlets and can carry them around in shirt pocket for a day or two to let them get used to my scent, voice, etc.
Their normal food is some compressed chunks of special food developed for lab animals called Lab Block, so almost anything else is a treat (Lab block specially formulated for rats was available in Tampa, but here I can only find the kind made for all rodents, from ratz to rabbitz) -- Right now I have a lot of expired but not bad yet food in my fridge, so I am feeding them (and my balcony Crows) some of that -- They really like the Braunsweiger sausage -- Special treats are yogurt drops or yogurt-covered raisins.
I need one more small dosage cap (forgot to ask at pharmacy) so I can put some Greek yogurt (good for humans with peaches and honey on top) in a cap for each and not make a mess -- Amusing to watch them after something like that, cleaning off their whiskers and faces.
Pete,
If you want me to get some of the Lab Block stuff and mail it to you just let me know.
Thanks, David, but even the place in Tampa quit carrying the specialized block and started in with the generic stuf when I was last there in 2004 -- I don't know what the real research labs are doing to ensure that the lab animals get the right diet -- There's a surprising difference even between rats and mice, which I would think are virtually the same in that regard.
Not trying to keep them all on a controlled diet for research purposes, I figure I am giving them what they need with all the extra food.
Pete
Don't you think that you need to control their diet so that they don't become "fat rats"? Do you ever turn them loose in the house and if so, how do you gather them back up? You probably can't call them right? Or lure them with a treat? (you can tell I am a dog person here) What would happen if one hid somewhere in the house and you could not find him?
Glad that your suction machine is working well for you. I had one for the first surgery and it worked well for me. It was not such an asset for my poor sister who had to leave the room every time I used it bless her heart. The second surgery they would not let me use one because the feared damage to the flap.
Patty
The rats will eat too much if I let them, but the lab block is bland enuf that it is sort of self-controlling -- Plus they are still young and growing.
I don't let these guys run loose yet because there are still too many spots where they could get in and under things, to say nothing of chewing! It's amazing how many holes there are on the underside of things like kitchen/bathroom cabinets.
However, for caged rats, the cage IS home and eventually they will go back there (Unless they are hit by a Nap Attack and conk out under something), even just to pee. It was a lot easier when I lived in my little RV because it was easier to let them out and keep an eye on them, plus I would make a clicking noise with my tongue (Hmm, need a new plan here!) that was the "food noise" and was followed by a treat when the rat showed up. Just like small children, if the rats are quiet, they need to be investigated to see that they are not getting into trouble!
I do have to use care with the suction machine around the flap area, although that's not as important now with so much of it recently hacked away... Actually, it was even useful there to pick up the trailing pieces that I wanted to snip off.
Pete
Hope you are feeling better as each day goes by. Mt first flap was also taken from my thigh.
Apologies if you have already answered this in another thread, but I was wondering how/where did the docs access your tongue to do your glossectomy and build your free flap? Was it from around your neck?
Karen
They went in with a horizontal incision on my neck front again, but also through a vertical incision through the right side of my neck -- Busy as beavers they must have been, with two portals into my throat!
Now that the failed portion of the flap has be removed, the vertical slice has healed nicely, but there are still two very small places in the horizontal slice where it occasionally still leaks. I'm getting a lot less secretion drainage at the trach and the suction machine has definitely not been having to work as hard the last few days!
I'm seeing the nurse practitioner again today (It's been weekly followups with her since the surgery) -- That's another good thing about using a CCC instead of a single Doc's office -- She is the key person regarding the followup care, taking care of home delivery of food and pump sets, trach support machinery (air moisturizer, suction, etc.) and she will be arranging stuf like swallowing test/therapy, physical therapy, speech therapy, etc., writes prescriptions, cleans out sutures, etc.
However, not all teams have the nurse practitioner -- She did a presentation recently at a conference on her role, esp in the followup after the surgery.
Hi, Pete,
Glad to hear you're doing better. I hadn't read this thread for awhile and have really enjoyed hearing about your rats. At my first teaching job we always got baby rats for students to train in operant conditioning, etc. The standard routine was to euthanize the rats after you have finished the experiments. I couldn't bear to see them killed and actually found homes for them but ended up having to keep 2 males. They are very social, curious, entertaining, and love to be held and petted. The males do have to sort things out in terms of dominance!
Actually, taking home the "used" rats is likely the way pet rats got started -- It would be hard to work with them without becoming attached!
Oh Yah? Just try me! I am POSITIVE I would not become attached!
Donna
Of course, there are the folks for which there is no hope, whatsoever! <grinz>
It has a lot to do with the fur-less (not hairless, just furless) tails -- Squirrels are built essentially the same but the fur on their tails makes them cute! My "hair-less" (really fur-less) RatHarriet (She wasn't 'Harry') was so ugly she was almost cute -- Same for hairless cats and dogs.
The Quack Pack has become tame enough that I can pick them up individually without trauma, so I weighed them last night:
RatPhooey (who is still licking my hands) 9.2 ounces
RatHuey 11.2 ounces
RatDewey 14.6 ounces
Not going to mistake these guys for gerbils!
I never weighed my biggest rat, Ratatouille, but he had to be bigger than all three of these combined!
RatDewey is unusual because he very gently takes treats offered by hand -- RatHuey snaps at treats like they were the last ever in the world, even trying to yank on the spoon if I'm giving something like yogurt or cottage cheese -- RatPhooey is in-between, wasting no time getting his share (he often runs off immediately to stash it and come back for more) but not endangering my fingers in the process.
Pete
Does RatDewey need a diet?? That's almost a pound! I think that RatPhooey just likes you and that is why he keeps licking you. You sound like you are feeling better than you were. How was the appointment with the nurse practitioner? Any new news?
Is it more normal for the to snatch the treats? or to stash the treats? If one would bite you are there any health risks for you??
They sound similar to my dogs - I have one that is very much the gentleman, one that almost takes fingers if you are not careful but is learning that also tries to bite the spoon. All of my dogs can eat from a spoon, know what ice cream is and the most fun of all - will let you squirt Reddi Whip in their mouths. LOL
Patty
They will get bigger -- RatDewey looks fat and lazy when he is sprawled out sleeping, but you should see him move when he wants to -- Rats can be faaaasst!!
Have to be careful with something like a spray because rats (and horses) can't vomit...
They are competitive, so it is natural for them to snatch, but one trains them at first by letting them sniff and examine fingers for a while -- Feeding from an open hand, like with a horse, is safer, but harder to control. I have only been bitten once and that was when I stepped on a rat with bare feet when living in my tiny RV (6' x 10' inside; a 13' Scamp trailer) -- My son made the mistake of opening the cage door before cutting some meat into small pieces and one of my previous RatLadies accidentally bit him -- Not really any different than any animal bite.
Not sure yet if RatPhooey senses I'm sick or if licking is his way of greeting -- Rats groom each other, so they do the same with human buddies -- They also 'barber', chewing off hair, but that's more of a dominance thing.
So far, no bruxing, where they rub the outer incisors sideways against each other to wear them down and keep them sharp -- When rats do it, they are generally content, so it's nice to have a bruxing rat sitting on your shoulder -- OTOH, when Guinea Pigs do that, they are angry!
Pretty soon, I will start taking them out of the cage and tossing them onto my bed pillow, then catching them and doing it again -- After a while, they will run down to be thrown again -- Then I will graduate to all of them doing it, racing each other to my hands -- They really like games like that.
Pete that sounds too funny. Now do you have to reward them with a treat to get them to come back for more or do they actually enjoy it?
Patty
Haven't done it yet with these guys, but all my previous rats were up for a game (some even invented some, like RatBertha with Jeanne (my ex-wife) and her chair in the morning) as long as they were fully awake -- However, I try to make a point of giving them a treat once they are back in the cage (sometimes makes it easier to get them back in the cage when they are exploratory females) -- It's very frustrating right now to not be able to make any "food" noises to signal that treats are on deck!
RatBertha was the best game rat so far -- If I ran up and down the stairs, she would bound along beside me -- When Jeanne gave me a tiny key-chain pump squirt gun for Christmas one year, as the little kid I am, I started squirting RatBertha with it and she started ducking around corners and then peeking back -- We would chase each other around the house for a while -- She was also very content to go out in public on my shoulder, surveying her domain like a Pasha in one of those fancy elephant-back carriers -- I had her wearing a red scrunchy around her neck one Christmas season as we all toured some outdoor markets.
Are you serious? You could actually go out with RatBertha on your shoulder and she did not run away?? Was she tethered in some way?
Have you thought about getting a clicker for the food noises? They are used in dog training. It is just a small piece of plastic with a piece of metal in it and when you press on it, it makes a click noise. The whole idea of clicker training a dog is that each time they do a behavior that you want to reinforce, you click the clicker and give a treat. You could train the rats that the clicking noise meant that treats were on deck. I have a blind dog and I got the clicker that I use for him at Pets Mart I think - pretty cheap. I'm sure that you could get one on the internet.
I think that once the Quack Pack is trained we should get you on Pet Star on the Animal Planet. Most of the contestants are not nearly as entertaining as your descriptions of the antics of the rats.
Patty
Why would she run away? She was tame, bonded to me and I am part of her mischief (a group of rats is called a mischief, an appropriate name if one has ever had a couple of female rats as pets) -- I represent lots of food and attention, not a role as a jailer -- At home, I could let her roam a bit during the day and she would return to the cage (built runway up to door) to use the potty or store found food or take a nap.
Here's a film clip of a lady rat named Apie jumping the wall of her play pen (some people rat-proof an area for pets like rats to have open play and some set up portable play areas with the plastic they use for political signs called Coroplast):
http://s545.photobucket.com/albums/...on=view¤t=EscapeartistApie.flvI've watched RatBertha easily jump from the floor to a chair and then up and across to the kitchen counter -- Had to keep the chairs at a distance to keep her off the counter.
I mentally debated using my clicker (already have some), but decided that my condition with regard to making noise is temporary -- I don't want to be dependent on having the device to communicate -- There is an animal training school here in the Pac NW (Sequim WA), nicknamed Chicken School, where they use clicker training and chickens -- Reportedly,the advanced class uses the chickens trained by the basic class to teach more stuf.
http://www.clickertraining.com/ A good book is "Don't Shoot the Dog" by Karen Pryor.
Pete
For some reason I don't get the video on photo bucket. I get the rest of the page, and the title at the bottom, but not the picture.
I like Karen Pryor. I do agility with my dogs. My pack consists of 5 energetic pointers and the agility is great because it is physical, uses their brains and they get to succeed at something they like. All but 2 of mine are from rescues and especially at first, they need to succeed.
Mischief is a good name for a band of rats because I bet they can get into some mischief if left to their own devices. It would not occur to me that they would bond with a human like that. I would think that if they saw some food that was really appealing they would jump for it. I guess that they are more social with humans than I realize. How old was RatBertha when she was able to have free roam of the house?
Patty
I guess she was about six months -- She didn't have free roam because my wife was allergic to a lot of animals, so the upstairs was off-limits, enforced by a pocket door -- That allowed RatBertha to roam downstairs while my wife slept in.
Hi Pete
Just wondering how you are feeling and whether you are starting to get some of your energy back yet. Do you still have a trache?
I hope you are making progress and feeling stronger as each day goes by.
Karen
Energy is good, but not sustained. Still have the trach -- Office visit last week, next one in three weeks and one three weeks from that will be with Doc -- That's probably the earliest it can come out -- So, I've had it for two months with likely six weeks to go...
Throat swelling is going down very slowly, but in last few days, I have been able to grunt and make some noises that resemble words -- I can (barely) swallow tiny bits of water, although I am not yet licensed to swallow, and the thicker junk won't fit yet -- Less junk coming into mouth, but still plenty of it -- I am reminded of post-radiation mucus.
Pete,
Glad to hear from you. I was starting to worry. Can you make a grunt that sounds pleasurable to the pack yet?? How is their game playing coming along?
Is there a reason why your throat swelling is going down so slowly?? How is therapy helping you?
Patty
Therapy is helping, esp for my leg -- According to nurse, I am ahead of the curve, not behind it -- Between radiation and two surgeries, I guess the area is a bit stressed!
Pete
I realize a seasoned veteran like yourself has used and discarded more trach work arounds than I can imagine, but ehen I did a search on OCF, nothing came up with a handy gadget they gave to me herein hospital until they pulled it this morning: a passy-muir speaking valve forspeaking that clicks on and off trach tubes. I loved the upening shot on yheir web page as it shows what I imagine as your "inner self" always young at heart despite being adult on the outside
the once and future Pete D - forever young
Pete
I understand the stressed part. My swelling in the neck was going down pretty well until about 3 weeks ago. It seems that if I do anything - housecleaning or the trip to the dentist yesterday and having to hold my jaws open so long - it swells again and gets very sore. Today has been particularly uncomfortable at times.
I wonder if some of the swelling is permanent.
Hope that the therapy keeps helping your leg.
Patty
The PMV speaking valve looks like something I should look in to!
Thanks!
pete
It is really a fascinating device and it's origin was an engineer who has to use a ventilator for life and was tired of not being able to speak. I was amazed on the difference it made with speech being insantly improved. It goes on with a simple twist and comes off for sleeping. they only last for two months. The opening shot of those super cute babies on the link in my prior post and the one in the middle with the bright blue valve really tickled my fancy. Hope you didn:t mind that i renamed the link in your honor. Plus the caption: "just one of the boys " with its implied message that despite the problems caused by cancer, we can overcome them resonated with me also. The hospital qve me one but i only used it for three days before they pulled the trach. On drawback is that mucous that used to ooze out of the trach tube now goes to your mouth but if you can spit, it;s better than having to suction the trach hole,
I realy hope it works for you
Went to see nurse this week and she's happy with progress in my mouth; did a little silver nitrate work with some loose parts of the failed flap to smooth it all out, but generally granulation is covering it all.
Also did some SN work around my PEG where I'm having granulation and wants me to see PEG installer to have the rest removed.
Will see Dr Haakenslash in a few weeks and expect he will do SN and maybe scissors work to remove some of the granulation that's right up against my teeth. Still brushing with green foam on stick because toothbrush causes a lot of bleeding.
Setting up appointments with speech pathologist at Virginia Mason in Seattle -- I have choices of drive or walk-on with ferry and then drive,walk or take bus from there. Unfortunately no SP here on the island.
Here are the latest weights, in ounces, for the Quack Pack:
____________2/6/09__3/18/09
RatPhooey_____9.2_____11.0
RatHuey______11.2_____13.1
RatDewey_____14.6_____15.4
They are not bonding to me yet, the way an "only" rat would, but that's OK because they have each other for company and aren't lonely when I'm not there. They do want me to interact with them, coming to the corner of their cage closest to me when I'm in the room. I've started playing "Get the Rat!" with them, where you chase them around the cage with your fingers, tickling their bellies and tapping them on the rear ends to make them scoot -- They like it and quickly come back for more.
But when I pick them up and put them on my shoulder, all they do is try to get down and back to cage, rather than ride like a Pasha on an elephant's back.
Went for a four-month post-surgery checkup CT scan on Friday -- One of the Cutthroat residents looked at it and pronounced it to look good, except my airway is still very tight (but it feels looser than before) -- Again, I asked for, and received, a copy of the scan for my referring Doc, so they didn't charge me for it.
After a short consult with Dr Haakenslash, the Cutthroat did some more silver nitrate cauterizing in my mouth to remove the excess granulation, esp next to my teeth -- That stuf tastes nasty, and even though he cleaned most of it out, I still had to do some more removal with tweezers at home to get the dead stuf out -- I should have borrowed the long, sure-grip tweezers and snips for the home work (If we do it again, I will) -- Next visit in a month.
Of course all this work bled a bit and I must be swallowing some of it because the slime in my airway was tinged with it, but much less so today -- All this activity is producing a lot more slime than usual, so I'm doing a lot of 'mopping' around my trach with paper towel bits.
Had some tissue granulation cleaned up last week around my PEG and the Doc mentioned that if it became a long-term problem, we could try a Low Profile PEG -- Based on another posting, I found the Mic-Key (Mickey Mouse??) low-profile PEG, which comes in various sizes up to 24FR!! Costs more than my current PEG likely did, but might be worth a try!
http://www.totalhomemedical.com/kiclbalowprg.html Here's a YouTube of a Mic-Key being changed and you can also see the tube that comes with it to attach for feeding (Christine, note the shut-off clamp that comes with the attachment; also note that Anthony takes his food at 300 ml/hr on the 'Roo pump).
http://www.youtube.com/watch?v=Mn4e...next=1&playnext_from=PL&index=25
Pete
Happy to hear good news on your check up and the PEG info is interesting. 300 ml/hr is a lot compared to my 166 ml/hr. One step at a time though.
Those weight gains are impressive and I am encouraged. I managed to gain a pound this week. But I can take dairy again so things will get better soon. How are my friends in the pack doing?? Maybe you have a link to the games??
Patty
I just weighed the Quack Pack again and here are the results:
____________2/6/09__3/18/09_4/26/09
RatPhooey_____9.2_____11.0___11.7
RatHuey______11.2_____13.1___14.7
RatDewey_____14.6_____15.4___16.6
Dewey's over the one-pound mark! Lately, Huey and Dewey have been diving up my sleeves as soon as I put my hands in the top of the cage, then squirming up and down until they get tired of it -- Luckily, they are in the bottom of the sleeves, because their little claws are *very* sharp. Also, they are all letting me pick them up much more easily now. I've tried them on my Nutren 2.0 and they seem to like it... But that's the stuf that's drinkable, esp with some NesQuik added to it.
When my daughter was here, we bought a nice loaf of unsliced bread at Wally and I cut a hole in one end of it -- Over a period of time, they managed to eat it until it was a shell -- She got a photo of Phooey poking his head out the end -- I tried to post that one here but was unsuccessful, so maybe this link will work:
http://www.flickr.com/photos/77835134@N00/3353420037/ Here's one of all three; Huey is at top, then Phooey and Dewey at bottom -- As you can see, they like to sleep in a pile:
http://www.flickr.com/photos/77835134@N00/3353419939/in/photostream/
Pete,
How big do they get?
My cats would love to meet them?
I don't know -- The one male I had previously got pretty darn big and was very gentle -- He also had no instinctive fear of cats and when introduced, the cat would generally shy off because he wasn't acting like prey! Cats are often wisely afraid of the unknown...
Great pictures Pete and thanks for sharing. They look very soft when they are all three in their pile. I can't get over how much they are growing. I wish I could put on weight that fast. Do they get longer and wider as they gain weight? At one point would they just get bigger around?
I really like the loaf of bread. I bet they were very entertained by it.
Patty
Actually, they are surprisingly soft until they decide to muscle something and then they turn into a surprising bunch of muscle and very fast -- I can hardly follow them around the cage with my eyes when they annoy each other into a play fight!
They get longer also -- It's reptiles and bass that stop getting longer and get wider! <g>
[quote=Pete D]It's reptiles and bass that stop getting longer and get wider! <g> [/quote]
And sometimes wives and husbands tee hee