The biopsy today came back positive. I am in shock mostly. I am also in pain. I see the oncologist on Friday to find out what my options are but the ENT and the reconstructive surgeon say it is inoperable.
I'm going to compile a list of possibilities for second opinions. The oncologist says that there are some clinical trials also.
It is a very quiet night here for me and my puppers.
Patty
Oh Patty
I have been thinking of you often and I just don't know what else to say except that I am so sorry.
Karen (((((Hugs))))
Patty
I am so sorry that this has happend. Please do your best to remember that you have us to lean on. Feel free to vent if you need to. We are here for you.
Well my heart sunk when I read this. Boy this sucks. But, I am glad to hear that you have begun to think about your action plan but
I am sure the shock of the results will take a day or two to sink in. Know we are here for you and will help you in any way we can. We will walk this journey with you - regardless of the path.
Hugs
Donna
Thank you. Once I come out of shock I will feel the need for more information and I have the appointment Friday AM to get that. Nothing today was very positive - it is a very aggressive cancer, it originated in the left floor of my mouth, them moved to my tongue and now is in the right side of my neck. I'm certain that there is no more radiation in my future. I have been down that road twice now.
I sure did need the hugs tonight Thank you
Patty
I would like to add a big (((Hug))) from me.
Patty i am so sorry
this path is sure getting well trodden and i am sad to see you getting the news we all dread.
my thoughts and prayers are with you and i hope you get some options soon.
love and hugs liz
Patty
This SUCKS and is totally UNFAIR and WRONG. I know all too well how bad it feels to be "two timed" by Cancer, but Three is too much. Words can't help here, but you are not alone. I go in to my Radiologist in an hour to discuss getting "Cyber-Knife" radiation in an effort not to join you in the round three club.
You may want to ask about that as I am being told that despite getting the "maximum" 72 GY 18 months ago, the Cyber Knife is so targeted and precise that they can do it again. It is usually used on Prostate cancers and when more radiation after IMRT has failed.
Good luck and best wishes
Charm
Patty,
Why did they say it's inoperable?
I'm so sorry you are having to deal with this.
I'm still whirling from yesterday David, but my sister was there with me and the ent is available to answer questions for me today once I get myself together. She said that it had something to do with the arteries in my neck and the location of the tumor, plus the quality of life afterward. I know that can decide the quality of life part.
I will be getting more info today and I'm sure that a PET will be ordered so we can find out what exactly we have here. What sucks about this is having to gather info and make really important decisions when you are so sick you can't decide what shirt to wear. LOL
Patty
Patty,
Honey, I couldn't decide what to wear before I got sick. Don't feel bad about that. Just go topless : )
I am so sorry to hear all this. You will be in my prays and thoughts.
Amy
My heart goes out to you Patty. I am so saddened to hear the latest news.
Hoping you get some positive news tomorrow and as Amy says forget the top altogether :-0
Love and a big {{{{hug}}}} from across the ocean.
Gabriele
Patty, I am sad for you.... My heart aches for all with this wicked disease. Where are you in Illinois. I am also in Illinois. My daughter was treated a couple places here. The last and most aggressive was Univ. of Chicago. They seem to be in the top of the list of Head and Neck Cancer.....in the midwest. You can message me anytime.....
I am praying for something....
Linda
Patty,
More {{{{hugs}}}} and prayers being sent your way. This certainly is not the news we had been hoping for. I hope that you have a more positive report tomorrow. Don't worry about what to wear - something will jump out of your closet and say "wear me today." If not just close your eyes and reach in.
Malka
Thank you guys so much. I'm pulling myself together - this is just not something I ever thought I would hear. I am thankful that I have you guys to help me through this and this site to share with my sister who is stepping up as my care giver. Her name is Carolyn and once she has a chance to read some posts and blogs, we'll get you all introduced.
Off for more beauty rest
Patty
Patty- I am so sorry to hear of this news. I wish you didn't feel so physically bad. Breaks my heart
Wishing you all the hugs t the world. I'm hoping your family and friends gather around you and support you and comfort you.
We are here for you to converse with.
K
Awe man Patty. This is unbelieveable. You have been thru so much to get this far down the highway of life and thinking no more bends in this highway. I feel so bad for you and what you must be thinking. I am praying that there is something they can do for you to get rid of this diagnosis. I am too into shock to type anything that makes any sense. All I can say for now is, make that list and ask those questions today. Listen for any answer that might give you an idea of something you want them to do. Post when you hear and good luck today,. Your buddy Jim
Patty,
Words fail me...so much to handle and yes, when you feel awful, it's really too much.
Glad you have someone helping you. Sending hugs your way,
Deb
Patty,
Thinking of you today and hoping they have a trial that will help you. Now that they know what is causing the pain, maybe they can get it under control. Please post as soon as you can and I'm am so sorry you have to go through this again.
Take care,
Eileen
Hoping today is a better day for you.
These are the notes that my sister used to explain all of this to my folks yesterday after after I saw the Oncologist. I am looking at a second opinion, although my doctors know me well and I trust them. I would not want to get tricked into doing something that would make me feel terrible for the time I have left. See Bran Hill's Post June 13, 2002.
Today I met with Dr. Mary Bretscher. She is my Oncologist. This is the information that needs to be shared:
My cancer has returned.
It is not curable.
The goal is to have the best quality of life possible.
If Clinical Trials are going to detract from the quality of life you should not do them. There is no clinical trial with this type of assurance and I will not be pursuing one.
Erbitux treatments on a weekly basis will help with white blood counts and possibly reduce the tumor size but there are no guarantees. This is a temporary treatment and is not a cure for the cancer. There will be a time when it no longer works.
Memorial Home Care has been contacted to set up night feeding assistance to help maintain strength and meet feeding needs.
Hospice is being contacted and arranged when needed. I have chosen to stay at home and not go into the hospital.
I asked what time frame we were to plan for, and the answer is months.
Carolyn and I will be planning and making arrangements through an attorney over the course of the next few weeks.
I am grateful for any help that anyone wants to offer. Email is the best way to contact me. Right now I am very tired and trying to get as much rest as possible. I want to enjoy as much of this time as I can and even though I may be tired I can still be happy.
I wish I had some real help. A machine that would turn back time. Some way to take away all the terrible words you have had to hear in the past week. But I don't have those and I feel powerless. All I can do is stand by you, put my arm around you, and walk with you. I hope that is enough.
Donna
Thanks Donna I appreciate every hug and good thought that you and every one else here gives me.
Patty
This was a fairly productive week. My sister and I managed to get some things in order and we have set up the home tube feedings with the pump. Bought a recliner so I can sit comfortably and let the pump run during the night.
Next week I start the Erbitux. We have an appointment with the attorney to make sure that everything is in order there and I am working with my friends to have my dogs all taken care of also.
Then I hope that I can sit back and feel pretty good for several months.
Patty
Patty, I know you have to courage and the will power . Therefore lets make the momnths up until 12 and then keep doing that. I know there is nothing I can do to help butpray for you and send smome of my guardian angels to you. You have had a rough go of it since I have become one of your friends and none of us are tougher. Keep your thoughts on the upper level and never give up. Wish I could be there for you to help with your everyday chores.
Thank you Jim. I will plan on getting some gas for the lawn tractor since you don't plan on coming over. The everyday stuff is really the hardest.
Off to church - how did your tests last week come out? I have probably overlooked them.
Patty
I get the test results back next Friday. Only thing bad right now is my tongue. Hurts like all get out but I will ignore it. I had to scrounge gasoline yesterday to do my daughters graa, so we took my exwifes LOL I did her back yard which is pretty big too, so she was happy. If I could get there and back real easy and fast, I would take care of all your chores for you.
Patty, I am so sorry. I just found this threaad and I was shocked to see what you said. I know there is little I can say or do but I am thinking of you. I'm happy your sister is there for you. Please know I am here for you whenever you need to talk.
((((((HUGS)))))))
Patty,
No words can truly express the sorrow I feel in reading your latest posts.
I want you to know that I am thinking of you and pray that you are comfortable.
Jerry
Patty.There are numerous documented cases of people that were given short times to live that still were alive years later. Medicine has no logical reasons to explain this happening. Never give up hope. Drs are not always right. May the Angels watch over you.
Sweetpea that is so very true. I know a guy in Steubenville that has been living with htis garbage for at least 15 yrs. His brother , that I didn't know had it just died from it a couple of weeks ago. I know it couldn't have been very long but it's possible.
Dear Patty,
I'm so sorry to hear the news. My husband is also in your shoes at this point. We start Erbitux on Thursday. I will be praying for you and your sister.
Lori
Patty, how are you doing? Hope you are feeling stronger. Hows the doggies?
Here the weather has finally turned to springtime. Hope its a nice sunny day where you are.
Patty...always thinking of you. Please let us know how you are when you feel up to it.
love...suzanne
I am so saddened by what you are going through and understand that you will only post when you are up to it Patty.
Will be looking out when you do here and on Facebook.
Love and prayers
Gabriele
Guys I am getting some strength back and getting most of the "have to" stuff out of the way so I can relax. Right now I don't know where I belong on the forums so please point me there if I am not in the right place.
My family other than my sister who has agreed to be my caregiver is driving me over the edge with their total disregard for me or what I want. They think it is ok to just come over even if I said I would not like company today. I am not sure what to do with this mess. I am considering the cannon upstairs and we'll see who can make it down the 1/4 mile driveway at this point - LOL - they are so selfish. Mom's only concern so far - no she has not asked how I feel yet - is the will and what will happen to my house. I always knew that I was dealing with a mother that was not quite right - but I am seeing some true colors here that are just shocking me.
I plan to ask for some professional guidance to be able to deal with this because they are just trying to walk all over me now and I am still pretty dog gone healthy. It is as if what I put in writing does not mean a thing to them. Poor Carolyn will have to deal with this mess - there has to be a way to fix this now.
Anyway I feel better since I vented -
I weigh 93.8 lbs today - up from 91.7 on Monday. I am getting about 4 cans of Jevity in per day and today I did the Cinch/Nutrocalorie 650 cal shake also. It is the first dairy I was able to keep down so now we will work in the Carnation.
Lots of poison coming out of the lower abscess so that is good. And I am sleeping, but not constantly.
Talk with you all soon. Love Patty
Patty I have no idea how to answer your post and will leave it to others here who are better at putting their thoughts in to words. Having said that I understand some of your frustrations and only hope that things get a little easier for you.
If venting here makes you feel better....continue doing so whenever you need to which if I were in your place would be often.
Love
Gabriele
Hi Patty
The hardest job of a chief caregiver is also making sure that family and friends understand and abide by the wishes of the one person who matters,that of course is you and in my case it was rob.
He went through a spell where he didn't want to see anyone ,he didn't want to spaek to anyone,he wouldn't answer the phone and i had to stand between him and all the misguided folk who thought they knew better what he wanted and needed.This sort of news brings out the best and the worst,and certainly sorts out the true friends from the ambulance chasers who seem to thrive on other peoples dramas.As for families there was never a truer phrase penned than "you can choose your friends but you can't choose your family"I hope your sister has a thick skin and a firm voice because she will need it.
This is your time Patty and how you spend it is up to you and no one else.Don't bow to peer prerssure about what you should do because no one has the right to tell you how to behave as they have NO idea how you feel,or what you want,but it will be up to your sister to make sure they know.
Rob wanted to say goodbye while he was at home and then come to yorkshire and die with JUST me.His family accepted he wanted to come here but then said we will come and visit at weekends and hsi sister wanted to come and stay.They just didnt get it.As it happened that didn't happen and we didn't get into a confrontation,but we would have done because he didn't want them turning up.Once he was in the hospice evrything changed and because he was pain free and relaxed he entertyained for england and was very happy to do so.
As for legal matters,he asked to get a lawyer come to the house,which i did and i left him alone while he gave her his instructions.He said he wanted me to be his executor which i declined as i felt it was best to leave everything to an independant leagal team who had nothing to gain and couldn't be accused of trying to influence his wishes.
Ultimately patty its your life and its your choice how it comes to a close.Tell the vultures to stuff off and let you do it your own way.
love liz
Hi Patty,
I'm so sorry your family is not listening to your wishes. Can your sister say something to them? That sounds so frustrating.
Glad to hear you were able to put on some weight...that is good news!!! It's nice to hear from you and I am thinking of you.
Hi Patty,
I am so sorry about your recurrence and your family situation. I was my mom's caregiver when she had pancreatic cancer, and I ended up having to put a sign on her door saying "Not feeling well today. No visitors please". Then just lock the door and don't worry about it. YOU come first. Carolyn will have to be your advocate. You can't stress yourself out, she can deal with the family. You are right when you say that Ron and you seem to be in the same place. Just remember, you are not alone. We are thinking of you constantly. Please take care.
Lori
Hi Patty,
I am so sorry about your recurrence and your family situation. I was my mom's caregiver when she had pancreatic cancer, and I ended up having to put a sign on her door saying "Not feeling well today. No visitors please". Then just lock the door and don't worry about it. YOU come first. Carolyn will have to be your advocate. You can't stress yourself out, she can deal with the family. You are right when you say that Ron and you seem to be in the same place. Just remember, you are not alone. We are thinking of you constantly. Please take care.
Lori
Lori, Suzanne, Gabe and Liz and all of my wonderful friends. I officially turned some family members into spam today and that will help. Carolyn says that she is up to it and I will pass on all of your wonderful advice and experience. The legal paperwork will be in place by Weds - then I just will put a guard out front if I have to. It is my time and my wishes.
I'm going to get some more rest. I have a good friend here with her daughter and we are working out some of the details with my dogs.
I am able to keep dairy down again and that will help me pack on some more pounds. The recliner will finally get her Monday and once I am wireless in the living room it will be easier to communicate.
Thank you for your support - for the help to be strong. I am thinking of all of you and praying for you Lori and Ron. So glad that we have each other.
Patty
As always Patty, my heart goes out to you. We are always here for you and I think about you everyday. You had me laughing that you made your family Spam....lol Take care of yourself. Good for Carolyn to take care of the family...sisters are great!!
xoxo
I am just checking to see how everything is today? I hope you are able to enjoy some of this weather Patty and be with your dogs a while and enjoy them.
Patty
I check for your updates everyday. Hope you are feeling ok today. Glad you are able to eat dairy products. Yoplait makes a very good smooth yogurt, Ive also heard raves about Soneybrook but never had that kind.
Too funny about family members being turned into Spam. Most of my relatives fall into the "spam" catagory. You gotta do whats necessary to take care of you and your doggies.
Dear Patty,
You are in my prayers daily as well. I wish you strength and courage and peace.
Love,
Lori
I like how you did that to the relatives Patty. That made my day so much brighter than it was. I get down and that must be the reason for me wroking all day long and into the nite in the house. But you just made the sun shine with your post.
Hi Patty have been watching and reading posts and just want to put my 2 cents worth in....I hope you can feel confident in taking care of #1 the Good1....lol....I am sure you are just as fiery as ever and I just want you to try to do everything that is important to you after all this is about you not your family ...
I say liquidize and go on one heck of a world tour... with a OCF family memeber at every stop...take care my friend and look forward to hearing from you!!!
Had a very nice first part of the week. Yesterday the apple tree was in full bloom. I hope to have apples this year. It is a golden delicious and they are wonderful cooked or in juice.
Juice is now my favorite drink. Blueberry is good, banana/strawberry is great. I add 4 oz of prune juice to some breakfast blend to try to stay ahead of the pain meds.
Managed to get more food in each day so that will help. Now I am focusing on learning when to take the pain meds to keep everything under control. I see the GP today about the depression. I had to stop my Effexor because it was time release so now we need to find a replacement. I am not a crybaby although I know that there are benefits to crying. Right now I just swell up sometimes w/o warning.
I am getting lots of drainage from the lower abscess still - changing the dressing 3 times a day at least and I could repack it more than once I just have trouble getting it started. Me and the doc will work this out this week so that all this icky can get out of me.
The recliner arrived today. Katie is not sure about lying in it with me yet. Marshall is all for it. My friends have been here and we have the dog arrangements started. One of my uncles was vet to Lettermen's dogs in CT and has offered to help if I need help placing them. He once had a Doberman that went down to the store at night and went shopping by itself and then the store owner would send him a bill. My aunt died from ovarian cancer last year and she was a remarkable lady. she lived 3 years longer than they predicted. The will is at the attorney's office so I can sign it on Weds. I am getting some peace of mind at least.
So happy to make you laugh Jim - laughter is very important you know. There is something to make you smile in everything. thank you Christine and Lori for thinking of me. Lori I pray for you and Ron each day. I hope that your journey is also fairly smooth right now. Suzanne, you old married lady - i can still feel your big smile clear out here in the fields since that wedding.
Two ladies from my church want to come and clean my house on Thursday so I invited my mom over with them so that she can help and learn a little about compassionate service. She doesn't know about the lesson plans yet. LOL
Well I am of to hook up to the pump for a couple of hours and rest some more. I sleep very hard so I am a more tired than I know.
Lots of love and hugs.
Patty
Patty, I am so proud how you can figure out how to work lifes lessons into the daily routine of people. LOL No wonder we are friends. You are devious and I love it. Mom should be learning a lot from daughter. I hope this day, that is supposed to get wet, but enjoy it.
Mom was given her invite for 1 pm on Thursday, come dressed to help we will be cleaning house today. Her immediate response was "well I can't stay long because I have sororty at 6 pm that evening" I replied that I thought that we would have plenty of time. I bet that she does not come. Her loss.
My friend that is visiting until tomorrow planted 3 rose buses and another flowering bush today by the front porch. It will be wonderful when they start blooming. I hope to get some flowers out and I purchased some Lily of the Valley for a shady area that I am turning into a healing garden. It will be very nice and I have always like the lily of the valley. There is already mint growing there so it is a very fragrant place to hang out.
I heard from one of my Aunts and one of my Uncles today. It was very nice to receive a note from both of them that they are thinking of me and some of the fun things that they remember about me being a kid. Or at least younger - I am still a kid.
Saw the doc today and got some scrips for the stool softener and the antidepressants. Then went to the organic food store and bought a bunch of different juices to try. I am going to go put in 2 more cans of Jevity now and then next week I will add another can. I plan to work up to 4000 calories per day over the next couple of weeks. I am at a little over 2,200 now.
I did increase the patch to .50 today. I just could not get the pain associated with this draining abscess under control. I am learning to control my pain which has not been one of my strong suites before now. I used to be tough - but I do not want to be a tough girl any more - just comfortable.
Hope that you are staying dry Jim - it sounds like it will be wet week - but we will get more flowers that way right?? I still have to plant some squash etc if it every gets nice enough to have someone till the garden. It has never dried out enough to do it yet. Sleep tight folks I am going to raid the fridge LOL
Patty
Patty,
What kind of doggies do you have? This may have been answered before. My husband and I have 4 dogs; a mini Dachshund, our "curmugeon", a Jack Russell terrier, a black Lab and a yellow Lab. The Doxie and the yellow Lab were rescue animals. We love them all equally. Our lives are enriched daily by them. They always seem to know what we need. I'm sure if it becomes necessay, you will be able to find good homes for yours.
Patty, I am glad to see a post that seems to be more like the one of a couple of weeks ago. You have more positive in this post and sound like the Patty I know and respect.
Patty
Sounds like you are keeping very busy. The healing garden sounds lovely!!!! Lily of the valley is one of my favorites too. I love planting in the spring and watching my flowers grow. Last year a hummingburd came around quite often. Do you have any of those around your flowers? Its amazing to watch them, they are so fast.
Hope today is a good one for you.
Christine and Patty, what kind of bird is a Real bright pretty blue and has a chest the color of a Robins? I have one that joins me for morning coffee. It sits on a limb right over my head almost and just watches. I hope to remember my camera and get a pic of it. N o Patty I didn't get very wet, just damp. I will bring my shovel and dig your garden too?? LOL Can't dig one for Christine. She is going to move. I can go help her pack tho. Geez, I have 2 empty bedrooms, maybe i can move her in. THat made me smile too. LOL
Never saw a bird like that before. Try to get a picture of it for us. Ive let the grass take over my garden, Im not planting one this year. I was only in Ohio once by Mogantown, didnt like it too much. It was winter and very dreary, there wasnt even a restaurant for a cup of coffee but they had about 10 bars there.
Patty, hope you had a good day and you didnt overdo it. Hope you are feeling ok and the pain meds are workign for you. The patch worked wonders for me. So much better than taking meds every few hours. Hows the doggies? Are they snuggling with you in the recliner?
Hi Patty,
I was wondering if you can some people to my house to clean...I don't really feel like it!! Ray and I are painting our bedroom and we have been sleeping on the couch..lol Ahhh marriage:) I say, at least we're sleeping on the couch together!!
I love the idea of a healing garden..it sounds so nice. Lily of the valley has always held a special place in my heart. My grandmother used to put them in her hair before my grandfather picked up for their dates. They have been married for 71 years!!!
Thank you for keeping us in the loop. I check for your posts everyday!!
xoxo
Jim thanks for noticing the attitude is getting better. I am starting to feel a little better. Other than this PEG keeps clogging up on me. I am using the pump so I can nap and get more food in me, as soon as it is finished I flush it with water and I have been keeping it clean with 7-up and pepsi, but this is the 3rd night in a row that I can not feed right now because it is plugged up and I can't get the food in me. I am very frustrated by it all. I believe that the Jevity through the pump is heavier than what I have been previously feeding with gravity and water and therefore it plugs up. If I can get it unplugged I will be heading the right direction at least. I really have to have more food tonight. Enough whining-
IT has been cloudy and cool, but my friend from Chicago planted 3 rose buses and a Verbacium that are all planted by the from porch now. It will be lovely. I did some more research on the healing garden today - the idea is to have continuous color, water and to have surprise color come up each season. I will do some more Googling and planning - usually I just plant and see what it looks like - I seem to have success that way.
Well I will get up and let the dogs out since I am falling asleep sitting up again, then fix my tube because I need more to eat and maybe go to sleep. I never know how tired I am until I fall asleep lately.
Lots of smiles Patty
When my crappy PEG was clogging in the hospital, two things the nurses tried were cranberry juice (for the acid) and meat tenderizer.
Jim,
A Bluebird has a orange belly and a brilliant blue top coat. I used to see them all the time in Virginia. They were one of the first signs of Spring.
They are however known to keep bad company.
I will try both Pete - but not together. LOL I just about get things rolling problem free and then there is a little hick up - keeps me on my toes.
I have so many meds to go down the tube now and I have that all straight where they do not seem to be clogging it - the Jevity is just too thick. I think Christine was thinning hers and I am looking for that info now to try.
I'm still checking on the bird Jim - how many inches tall is it? That will help.
Got to take a short nap again - boy I should have all my beauty sleep by the end of this week.!!!!
Love
Patty
THe bird is about the size of a sparrow. I hope we learn whatthe heck it is besde pretty. Hey lady, how are you feeing? and has the Dr came up with anything yet? You worry me but you seem to have more energy going the last couple of days. How are you and mama getting along??Have a great day Patty and take this rain back to Illinois will ya.
Well Jim - huge surprise - mom is just too busy to come out for the next week or so. Blessing for me to not have to put up with it I guess. I just don't know how I would get by without all that help that she and Co Co Puffs keep giving me. LOL
I'm taking it easy today and getting ready for a short nap. I have a friend coming for a few days this weekend and we will just hang out here and relax.
We will have to Google the bird - they even have sites with their songs on them - can you get a photo of him? It does sound like a blue bird, but there are a couple of different kinds.
Patty
Patty, I struggled so much with my feedings that I have several hints for you. If you have trouble tolerating the formula, or in your case its just too thick, dilute it. You can add a can for water for every 2 cans of formula. There isnt anything to worry about if you add too much water, just make sure you get your required cans per day. If that works then add a can of water for every 3 cans of formula. Its all trial and error. You know straight formula doesnt work. The extra water helps also 'regulate' you. How many cans of formula are you doing per day total? What about nighttime feedings?
Its too bad about your mom. I wish you the best of luck when she does finally arrive. Hope everything goes smoothly for you and she is helpful. You are very fortunate to have good friends. Sometimes friends can be so much better than family.
Hope you are doing ok today.
thanks Christine
I remember seeing a thread from Pete about diluting the formula so that the pump could run all night. I started adding 4 oz of water per can today and will adjust up or down from here. My goal is 5 cans per day, plus the Shaklee shake that I have each morning and I have not been getting the formula in the past two days. Of course, it does not help when I am gone for Ebitux for over 4 hours when it should not take that long or that I have to stop at the drug store to buy supplies that the visiting nurse keeps running out of. I had a discussion with the nurse today. She is also suppose to see if someone from Hospice will talk with me because I need some more support and need to know what to expect. Right now I feel like there is plenty that they are not telling me and don't like that part.
So glad that we idtenified the mystery bird!Stay dry over there Jim - 3 or 4 days of this weekness.
Love you Patty
The healing garden sounds so neat....can't wait to hear how it goes. Maybe you can post some pics on FB!!
Have fun with your friend this weekend....that sounds like fun!!
Did you get my message about the bird. I pulled it up on search and it is a blue jay, This one happens to have the orange breast. Pretty little thing. He has plenty of company out there. cardnals ,sparrows, squirrels crfows, LOL You name it, it's in those woods. Dang deer walked thru my garden durig the nite too. GRRRR
Patty, hope you get the help you need from the hospice people. It would greatly bother me too if I felt left out of the loop with my own health matters. Your road is very very difficult. Please lean on us if you feel the need, we are here you know that.
When do you do your feedings? I did mine overnight and that way my treatments didnt make it so I ended up starving myself. Thats the awful thing about not being able to eat properly, you cant just stop someplace and get something. If you do several cans at night then daytime could be a can in the morning and a can later in the afternoon. Are you able to tolerate the gravity or feedings with the syringe? Those are very fast but made me very sick even if I sat still for an hour afterwards. The second I stood up there went all my hard work. Also, do you have enough formula bags for the pump? I still have almost a full case if you want them I can ship them to you, just PM me your address.
Please be very careful to make sure you are doing your 5 cans per day. You will feel awful if you dont get the nutrition. I ended up in the hospital a few times for malnutrion and dehydration. I know its not easy doing the feedings, but at least you dont have to taste that stuff.
Hope you are having a good day today.
Christine
Thanks for the tips I know that you are very knowledgeable on the feeding issues and I need all the help I can get - I have been using the feeding overnight one the past week or so. Monday we are replacing part of the tube on the outside that keeps plugging up. I wake up in the middle of the night soaked in food because it popped out or I got full and it popped open. I stated adding 4 oz of water per can yesterday and it is going better.
I have always done mine gravity and sometimes using the syringe and it only started making me sick about 4 weeks ago when I started fighting this infection. I am trying very hard to get the 5 per day. I messed up bad the past couple of days and only got 4, then 3 they yesterday less than 2 in me. I weight 89 lbs this morning!! I have been in the chair and hooked to the tube almost all day - when my stomach will accept food.
I also drink water, juice and a shake that I make that is 630 calories each. I did have a shake everyday this week so far.
The god news is that the abscess is MUCH smaller today and barely has anything coming out of it and it is almost all fluid. It does have a smell which is not good, but I am hoping to be on the downhill side of this infection which would help I bet. I have a low grade fever, but it has been coming and going for the past 3-4 weeks.
For now I will go back to the recliner and hook back up to my go juice. Hopefully I will be up and about better when the weather gets nicer too. I am fortunate that I have had friends here to help me for the past week or so. I just want the doctors etc to explain everything to me and my sister - sometimes I feel like they act like I am not here and that is stressing me out some. It is not what I had in mind, even though I know that they are trying to be helpful.
Love you guys -
Keep praying for sunshine
Patty
Been praying for sunshine for you since the get go Patty. Have some thunder hee tonite and I guess in the Columbus aea they have a tornado watch. luv Ya Lady
Patty
Hope your feedings go better very soon. Im sure you dont feel very well right now. Once the tube part is replaced it should go better for you. Keep trying with getting as much in as possible. When its all liquids its not easy.
Glad you are being positive and you are right about your friends. Its made a big difference for you. Friends are the family we would pick if we had a choice.
Well we better get out and do the sunshine dance - looks something like a rain dance with a little bit of those guys that sang YMCA mixed in. LOL
Patty
Same lousy weather for me too. Rain for the next several days. Tomorrow is the OCF walk and Im hoping it clears up at least for a few hours. I know you will be there with us in spirit!!!
Don't get too wet Christine. We had a nasty storm go thru last nite and hope it didn't head yor way. Have fun and meet lots of new people.
I think Christine and I may need ponchos!!! Patty, doctors can be a pain can't they? I don't think we are getting any sun soon!!
Talk to you soon....love you!!
I will be there in spirit. And I will send you some sunshine - I have had a couple of hours this morning.
Looking for info on the PEG replacement now - can they do it without needing to access your air way with a tube?? They want to replace mine on Monday since it keeps clogging, but my airway is constricted and they can't use a tube in it - the other option is a trach and I need to be informed if this is what we need to do so that I can be prepared.
I threw a little pissy fit this morning - everyone is talking around me, but not to me - I am still the patient here and although I have given them permission to talk with my sister that does not mean that they talk to her first. I've also had a couple of my friends that have been here sticking comments in to the visiting nurses as if I am not capable of telling them myself - I am going to have an INCREDIBLE HULK moment shortly if everyone doesn't back off. I'm not dead yet and I am not so ill that I can't talk for myself. There is bound to be a happy medium here someplace.
Have fun walking kids - do a cart wheel for me!! I would do one if I was there.
Patty
Glad to hear you are looking into getting that peg replaced - regardless of who is speaking! As I went to bed last night I was thinking about you, thinking firstly that "my God - 89 lbs - I haven't been that since I was 5!!" and secondly thinking that there must be a much better way for you to get your nutrition. I'm sure you aren't the only one who has run into trouble with the peg.
Patience, deep breaths, remember your family doesn't know how to act. They are feeling helpless and by stepping in to speak for you they feel they are contributing. There is no manual for your situation and Miss Manners hasn't yet weighed in!
Hugs
Donna
Jim,
Blue Jays don't have orange bellies, it was most likely a Blue Bird
Hi Patty,
We got your sun at the walk!!! It turned out to be such a nice day. It sounds like people don't know how to act around you. I hope you can find a happy medium. I agree, there should be one.
EzJim
Do you have a picture of the bird. I have a zillion Blue Jay's in my area; never saw an orange crest.
Sandy S.
No I don't but the bird guide , in fact 2 of them showed a pic and it says blue jay..It is right in with the ones with whiteish looking breats. I forgot to mention the canarys in my yard too. I will do my best to get a pic.
Patty, some people feel important by sticking theirs nosews where they aren't needed. I't just like giving them a pacifier' best to say what ya gotta and ignore .
Hi Patty,
Your pissy fit would be called a hissy fit here. Whatever you call it you are entitled.
Your post took me back to my week in intensive care with all the tubes including tracheotomy and nose feeding. A lot of the staff would talk as though I was not there.
Remember a young physiotherapist yelling at me. I wrote down that even though I could not talk I was not deaf. She took that on board for about 10 minutes
Reading all your posts and am sorry for what you are going through but still love the see your sense of humour come through.
Love
Gabriele
Not surprisingly, we are not replacing the PEG tube today with a fever from the infection. My doctor's sometimes do not talk to each other very well. I am glad that the antibiotics are not making me sick and I am having an OK day.
Later on I will take the furkids out in the yard so that they can run and play ball. I am still just putting food and medicine in and resting.
Patty
Sure glad you are having an OK day Patty. I bet the furkids are wondering what the hell is going on with you I kind of think our pets understand better than some people do. I hope your fever is gone before play time with your pets . Have a great rest of the day and smile alot...
I am making a daily/weekly schedule for both my benefit and for the benefit of others so that they will know things like which meds I take in the morning and which ones in the evening etc. It includes days and times that I do not want and will not have visitors. I have also put a nap in there every day because I like an afternoon nap.
I got the lawn tractor out today and cut 1/2 of the backyard. Then I got the front tire stuck in one of the craters that the dogs have made. Previously I would have been able to pick that up and set it out of the hole. Today I called a friend and did not even attempt it. Tomorrow I will cut some more of the backyard and then I am going to mark the craters with some flags. My brother in law is getting me some dirt to fill in the holes and I will plant more grass seed. To rotate the dogs from the side being repaired to the completed side I am going to use T posts and snow fence but someone else will have to pound the posts for me. The dogs are doing better about the digging and I do see signs outside the fence that the moles/ground squirrels have exit or entry holes. I am hoping that they are exit holes and that it will get even better now.
My nephews brought me a bouquet of lilacs yesterday and from the dining room table they have made the entire house smell good. The new roses are blooming and the blossoms are still on the apple tree. It is forecast to be nice and dry for the next new days. I hope that everyone enjoys this wonderful spring weather.
Patty
I for one am enjoying it Patty, but the last 2 days here have been a downfall mental wise. Too wet and cool. I'm glad you are out doing things but please go easy you old toughy.
Patty: You sound so much better. Work will keep you mind off your troubles, but so will having some fun. Try to get and do something you enjoy.
Take care. Remember we're always he to lean on.
Sandy
Patty, i finally am back on OCF. I do have access to the PMs now.
Lilacs are my favorite. I have some palnted here my children gave me a couple years ago for mothers day. They are still too small for flowers. Enjoy the wonderful aroma, they are only around for such a short time.
You must be feeling much more liek yourself if you are doing yardwork. Please watch that you dont overdo it. Make sure you are getting enough feedings so you keep your energy levels up.
Hope you have a good day tomorrow.
Christine - So glad that you are back with us. Don't you hate it when the computer or the interet is down?? I feel so disconnected from the world when I can not e-mail at least. Of course, I do not use the phone much at all so that makes a difference I guess.
Jim I hope that it is just the damp, cold weather that bothered you today and that is is gone tomorrow so that you can have a better day.
HA HA - KIA has a car out that looks like a Mini Cooper that I jsut saw on a commercial and Pete's rats are driving it - they are all being cool and listening to their MP3 players - it is way too cute!!
Sring is still here today and they are predicting rain again for the next 3 days. I hope that they are wrong. I finished the back yard this afternoon and I hope to cut the front yard. I would like to take it in for it's spring service and to have the blades aligned well. When I first bought this lawn tractor 3 years ago, every male in my family felt the need to come over and "help" me with my yard which included taking the lawn tractor apart and putting it back together. Once I get it put back together properly I will be requesting that everyone please leave it alone and we will let the professionals do the tweeking this spring and summer. LOL
Patty
Must be why my Wheel Horse is stll running and cutting with the same blades that came with it. It's a 1988 I bought in 1987 and it always cut 3 1/2 acres 2 times a week. NO ONE wqa allowed to touch the mechanical end but me. Still fires up after a couple of times of the starter. What you do Patty is have a hammer in your hands when the get near it and when fingers touch you touch with the hammer on fingers LOL
Sounds reasonable to me Jim. I get tired of people coming to my house to tinker with stuff because they are so sure that everything at my house must need a man's touch since there is not one living there full time. In addition to that my stepdad likes to rig things instead of fixing them prperly which will usually cause problems. I keep waiting for the day that my garage door spring shoots around the garage due to the half way job he did trying to fix it last summer. Theirs already did. LOL
I love having company, but lately it seems that everyone wants to do things or fix things for me. I realize that they mean well, but now I am having to redo things that I already had done because someone came along behind me and undid what I had completed. I'm having trouble kindly telling people to stop and directing them to the things that truly would be helpful to me.
Patty,
I'm a straight shooter...I would tell the people who are trying to "help" you what would actually be helpful. I bet they would appreciate that. You are right, they are just trying to be nice but they don't know what to do for you.
You are a busy lady!! It sounds like you could be at my house to help Ray. He is tearing apart our bedroom. It started with painting the walls and ceiling, then painting the bathroom, then new carpet...the list goes on. We;ve been sleeping on the couch for 2 weeks...lol
I'm always checking this thread to see how you are doing:)
xo
Patty, the garage that is with the house my ex has. I had made a large sign that i puty on tghe wall for all to see, said " If It's Here, Leave It Alone, It Belongs To Me " THey all laughed but left myh equipment alone.
Patty, when Christa was in 'that stage', she had many also that just wanted to drop by, all good intentions on their part, but not necessarily hers. YOU must have your wishes and feelings respected. A note on the door worked here too. Plus, I was a bulldog when it came to protecting her wishes. I hurt alot of feelings, but her wishes were top priority. If I made that clear, it usually worked. My heart is with you.......
'Hold, who you want to hold now.....it is your time.'
Thank you Linda I will pass this on to my sister who is my bull dog. As you know things are not so great for us right now. I don't feel good enough to be much help to her and I regret that.
Patty
Patty , you need the sign that says, " Everyone Makes us Happy, Some by coming , others by going. "
Jim I need more than just a sign right now. I need some reasons for tomorrow. My sister that is wanting to be my caregiver just left here in tears again because she thinkgs that she should move in full time and that I should not be alone, but she has been crying half of the day about the fact that tomorrow is mother's day and her son is with his dad today. It seems that noone knows what to do to help me, but they think that I need help. She spent the night here last night because I had a pretty bad day yesterday and when I did call her yesterday her phone was not charged and she never knew that I had called. Today she has complained of a headache most of the day and I think it is because she does not eat when she here. I told her this afternoon that really she needs to spend some time getting herself together so that she can be help to me. I have never seen her so stressed and I feel responsible for it.
I had a bad day yesterday and the tumor in my neck is growing and changing. It is moving my jaw around and the teeth that I have on the bottom right side have moved also. Both sides of my neck are very swollen now and it is not draining as well as it was. The doctor has been called so she is aware of what is happening.
I do not feel like I have much to look forward to. Everything I read says this is the worst cancer death that there is. I truly wish that there was something that could be done to change my future.
Patty
Patty, if I had the power I wuld heal you and put that smile back on your face. I hate a helpless feeling and have never felt more helpless than now. You are my buddy and have been for a long time. WE have laughed together many times on here and in Pms. My tongue is tied at the moment and maybe my next post to you I can add words that make sense. Have the best day you can Mam and hug an angel or two. Thats'what I do at times.
Im so sorry today wasnt a good day for you. I know you are mostly a postitive person so this must be very difficult for you. Try to take things day by day, maybe even hour by hour if necessary.
Your sister seems to be pulled in several directions and is feeling the stress. Poor thing, she has alot gooing on and isnt taking care of herself which we all know isnt good.
Hows your gardens going? Thats something that always cheers me up, gardening. Hows the lilacs? If nothing else, take a stroll over to them, close your eyes and take a deep breath. I wish mine had flowers, but so far nothing again this year. I finally finished my planting and landscaping the front of my house. I put a couple pictures on facebook. Do your doggies get into your plants?
Hope tomorrow is a happier day or at least a more relaxed and painfree day. I will say an extra prayer for you tonight.
I have the cutest little corn plants comin up LOL all 3 of them. Have a bout 3 beans coming too,. I bet the wet weather rotted the seeds.Tons of sun flowers tho.
How great!! The guy that farms the land around me says that he can not remember ever plnating this late. There is corn coming up on the 40 behind the house. Last night we took turns with the binoculars watching a hen and rooster pheasant chasing around in the mud and the little corn plants. I have been hearing the roosters in the morning when they get up and the bobwhite are calling each other at dusk.
I spread some more grass seed late yesterday and with the shower that we got this afteroon it may just get the chance to grow. I have a bunch of flower seeds to plant - sunflowers, Cosmos, Marigolds, and a couple of different daisies that I hope will grow.
Patty
I bet they will gro and every seed will germinate. My ground is too wet and it will rot seeds. THis is the 1st time it has happened for a lot of years tho. Me and my trusty shovel both have retired fot this year from spading more ground. Can't eat what I plant anyway except for tomotoes cooked in with food or sauce. Green beans if they are cooked long and soft .My kids and ex, plus my neighbors will use it up.
I am still going to plant some pumkins and squash Jim. I like both of them and if I mash them up with butter I can eat them. I am planting mostly flowers this year because they make me smile.
Patty
Hi Patty, how are you doing today? I Hope ok. Have you tried peas? I can eat them if they are meshed up. I grew some last year, easy and they dont take alot of room.
Hope your day is going ok. Have a good night.
I usually grow peas and I have some to plant this years. This cooler weather is going to make it difficult to grow much. The farmers have not even planted the crops out here yet.
Things are not going so good for me right now. I have a lot of swelling and a lot of questions.
Patty
I have sent a PM about this to a member who has a similar case to mine. I would also like to get the opinion of some more of my friends. Don't ask me why it takes me a little while to get worked up about somethimg. I don't know why it does, but I am feeling that something is not right.
I have another tumor that has appeared in my right cheek/jaw and it appeared within 4 months of my last surgery. It has been terribly confusing to me because first the doctor said that it was related to my dental work. I am wondering if my doctor really thought that or if she just told me that to keep me from worrying that it was the cancer. I intend to ask her and make sure that she remembers our deal is that no matter what I always get the truth. I would certainly rather have the truth than something that is glossed over just to keep me from being stressed out.
The doctors have said that there is nothing more that they can do for me and have offered the Erbitux. I am doing the Erbitux treatments once a week. The thing that they have not wanted to do is more scans saying that there is no need to spend the money. I say that we can not know what we are fighting without the scans. I plan to go stomp my feet and insist that I have a scan so that we can stage this cancer and know what I am dealing with on Weds when I have my next appoinment.
Right now all I know is that they cut my neck twice to relieve an abscess and it did feel much better right away. The first one has now healed, but the second one is still draining some and I can pack it with about 8 inches of packing. For a week it produced a cottage cheese type fluid, but now it is more a liquid with some color to it and a lot of bubbles from the "pathway". I do not understand the bubbles coming out of the wound at all.
The other thing that I do not understand is the swelling in my jaw/cheek and right side of my face. The swelling is very hard and I can not get any fluid from the wound by working any of the area that is swollen. The more swollen it gets the more painful it is to talk and it has reached the point on quite a few days where I will not talk at all because it hurts. The swelling also concerns me when I try to swallow. I have not had any complete blockage, but it does feel difficult to swallow when it is swollen.
I would really appreciate any opinions that you guys have about this and my doctor not wanting to do the scan right away. She says that she is not just putting me on a shelf to die and I know that she is concerned about me and she has stated that she can not do any more surgically for me because she would not put anyone through that. I feel that she has my best interest in her heart, but how can we know what we are dealing with if we don't know how big this tumor was on 4/15 when the biopsy came back positive and how big it is today May 12 almost a month later? Please tell me what you think? I can use the support and the guidance on how to be my own advocate please. I don't know how.
If it were me, I'd want to see the scan. And, I might want a second opinion or three.
What is the goal for the Erbitux, is it possible that the tumors could be shrinking?
Oh Patty, how I wish I could come out and help you with all your appointments. Its not always easy being your own advocate. Try your best and just remember that if you dont stand up for yourself nobody else will. You are a very intelligent woman, Im sure you will be persuasive to the doctors and hopefully they will do the scan. I completely agree with you that it should be done. I also agree with Margaret, any other doctors around there for a second opinion?
Even if you dont feel like it right now, to me you are a very brave person.
Patty , the 16 lb sledge is in the mail, take it to the Dr with you and get his attention by smashing in his desktop. LOL 1 Hit should do it. Tell him his toes are next. I am like christine and wish I could come there and take care of you and go whereever you need to be taken. As for my garden. I have pumpkns started and they are up as is watermelon and cantalopes.I never thought about peas until our buddy Christine mentioned them. Do what you have to ladies but do it good, LOL Nite you all.
Patty - When my husband initially was diagnosed there was question as to mets in liver and hip (long story there). Since we were having a meltdown as to whether or not there were mets, and therefore didn't have a clue as to what path to take, our rt guy explained that the Erbitux would keep things as they were pending the remainder of his treatment. The chemo nurses told me that they had several patients coming in for Erbitux for extended periods of time to basically hold things "in check". Being new to this I don't know if this is true, or if we were being patted on the head but I'm sure there are those on this forum that will chime in. As it turned out, there were no mets. Being the caregiver, and having been the caregiver in other situations, I would be pitching a fit until I got a scan. Insist, demand, do whatever it takes for you to be comfortable that you are getting the answers you need. If I were advocating for myself it would be the same. As far as "no need to spend the money" - it would seem to me that the cost of a scan you want for your own peace of mind is probably a drop in the bucket as compared to the cost of all the other treatment received?!? I know it would be for us. You're in my thoughts and prayers. Good luck with your appointment.
At least there are some people on the same page as me - I am not one to go check to see what the noise in the basement is with a flashlight, but with the right caliber I will go sew what I am up against. I would appreciate more suggestions and yes I will start looking for some one else to give me an opinion that is a doctor.
The social worker from hospice really opened my eyes to some things.
Patty
Patty
Scans are not always necessary or do any good. Despite the hype on PET Scans, none of mine came even close to showing the recurrence of the tumor - only the MRI picked it up as a possibility. I just had another PET scan but that was to stage the CyberKnife radiation sequence, not to check on the Cancer.
My ENT surgeon was and remains better at just looking and poking in finding the cancer than any PETscan, MRI or CT I have had. Erbitux did not do much good for me so it's Carboplatin this time around. I am amazed at how much IMRT radiation sessions your signature line shows. It's a real bitch to have radiation resistant cancer which forces us to surgery. Another doctor is a great idea as they can order up a MRI or CT for you and probably your best option if your current doctor will not reconsider
Sorry to hear about the drainage and wound issues, the frozen petrified neck is not pleasant either. I am now doing "scar massage" on the advice of my physical therapist as well as the plastic surgeon's resident. Nothing fancy or complicated: I will post it in the general section if you are interested
Good Luck and hang in there. It gets so depressing to have the cancer back after all we suffered. As Brian indicates on the summary of this thread, it is a very hard hand to be dealt.
I'm so sorry to hear your news and why does this disease keep coming back,is there any hope ever?
Patty:
Just some questions to ask:
Erbitux is now being administered with Taxtol. What benefits?
I had induction therapy which was extremely helpful. I've had Cisplatin, 5-Fu and Textera, but there have been studies for other combinations. There was a huge study done (Can't find the name now) of 500+ patients showing good results. Don't know if it is applicable in your case. But maybe one of the questions, you should ask?
Sandy
Charm,
Thank you for responding to my post. The recurrence is just awful!! Especially knowing that this is it. It will not get better from here.
I had an appointment with my ENT today and she showed me the CT scan that we did In April when we were hopefully that it was a dental abscess and I was able to see why it looked like an abscess. The cancer has actually invaded all the healthy tissue in my right jaw which includes the pectoral flap, my jaw bone on that side, the side of my face and my jaw. I have been thinking that the tumor was something that started out the size of a golf ball and then increased in size. I wanted to see scans or whatever it took to show me the growth so I could understand why my teeth feel like they are moving and my jaw and cheek keep changing the way that they look from day to day. With this big fluid mass of cancer they can not show me something like that. The ENT used a name for it, but because I did not write it down I will have to do some research to come up with it, In a nutshell though she told me that typically this cancer will move to the lungs or the bone and kill you from there. All I can do is wait nd see which one and deal with it.
I will look in the general section for the massage techniques. Anything that I can do that will make me feel better is welcome. I had a very positive meeting with hospice yesterday and it is very different than I had imaginied it. They currently have people in their program that have been there over 4 years. they were very focused on living and not on the dying part which really made me feel better.
Your post also made me feel better Charm. Keep your chin up too and I will keep you in my prayers,
Patty
Sandy St I will ask my oncologists about the combo of the Taxtol and the Erbitux. My cancer did not repond at all to the Taxtol combined with another chemo prior to this surgery. If anything it grew. I responded horribly to chemo and I was very ill from it. I really think that the chemo might get me faster than the cancer I was that bad off.
Patty
Patty I don't have much to say except htis sounds like the Patty I have come to know,, THe fighting one and it seems you have to fight back inside you, Go Girl and give it your best shot..
Jim
I am requesting a CT scan from omy oncologist. My ENT is still hesitant to give me one. She talked about how much they cost and I'm thinking hey who cares if I know what is happening with me?? She did go over the CT from April and showed me the growth in my neck on it. That was a month ago and I can tell that things are different and I want to know what. Even if I am going to die I want to know what is happening to me. I am afraid a lot lately.
I asked my sister to stay on Tuesday and she did so I got some sleep. Last night I was up all night because I can not swallow or breath very well. It is funny to me that the ENT can tll me that my cancer will usually move intot he lungs or the bone and kill me, but she can not tell me more than that. What I want to know is why my jaw is swllen on both sides and why my neck is swollen and now has stopped draining. It would seem that they could tell me more.
Patty
Patty robins face swelled to the size of a soccar ball.it is because the lymphatic fluid cannot drain through its usual channels and has no where to go so it seeps into the tissue and causes swelling(oedema).This problem can be rectified quite easily with steroids(dexamethasone)One of the less pleasant problems with a tumour that is growing rapidly where yours is,is that it puts pressure on the trachea(windpipe) and so produces a feeling that you may be choking.I am sorry you are not getting satisfactory information,but i am not sure what benefit you think you will get from a scan,it seems what you need more than a scan is to be told how the disease will progress and the implications.
liz
Cookey that is exactly what I am looking for and I'm not getting it. I thought that by comparing this scan to the one from april 15 I would be able to see the differences in the size of the tumor and know why it feels like I am chocking. Will the lymphatic fluid show on a CT scan? And I know that you can not answer this but why isn't my doctor telling me this - maybe she doesn't know??
Patty
I am no expert patty but i think the three different scans(mri,cat and bone)each have there own area of definition(tumour,tissue,bone)and i guess they will all show fluid but they dont all define tissue and tumour.Lymphatic fluid is mostly diagnosed by physcial exam(soft and spongy and leaves an impression when pressed as opposed to tissue scarring which is hard and tumour which doesn't leave a indentation when pressed If the tumour is anywhere around the trachea(windpipe)then as it grows it pushes the windpipe off centre and narrows the width,reducing the oxygen intake (a bit like pressing on it with your finger)so you may feel you are gasping for breath.I think the point is if the last scan identified where the new tumour is situated then they should know from your symptoms how it is developing.I cant imagine why they are not discussing this with you.Sorry i cant help more.
liz
I sure hope your day was a good one Patty. Nice dry day thT YOU COULD ENJOY. DAMN CAPS key LOL , Too many keys and not enough fingers.
Cookey - no need for you to apologize - you are helping more that you know. I made some progress today and will share it over the weekend. My sister is here tonight and I am going to try to sleep. I do not sleep very well when I am here alone.
I had a wonderful day outside Jim. My grassis so green, thick and pretty. I just stood around in it barefoot.
Ok guys I must rest my head keeps hitting the keyboard.
I love you and will talk with you tomorrow - I believe that I am finally getting some things straight and that the doctors are starting to understand the type of patient I am. Gee wiz it took them long enought to figure this out. LOL
Patty
Poor keyboard getting zonked by that hard head . LOL J/K Patty so don't hurt me.
Hi Patty,
I've just been reading this thread and my heart goes out to you. I know it's hard to be your own advocate but I know you are strong and you can do it. I have some thoughts for you. First, get another opinion. I know this can be trying and hard but I think it is worth it. Maybe your sister can help? I agree with you about the scans. Who cares how much costs? If you know what you are dealing with it make you feel better. I'm not sure why the doctor doesn't get that. You may have said this and I missed it so I'm sorry. What does the doctor think about the swelling? Isn't there anything they can do for that? Cookey mentioned the lymphatic drainage. I am not an expert but I had a bubble filled with something on my tongue this past summer and they said it was because my lymphatic system was not draining properly. I talked to my dentist about it and he did oxygen ozone injections and that drained everything and I've been fine since. Again, I have no idea if this would help what you are dealing with but it can't hurt to ask. The only problem with that is most doctors don't know about it so they don't want to do it.
I'm always thinking of you:)
Jim if you only knew how hard this head is! Love you
Suzanne you are right I just have to ask.
I stomped my feet and got the CT today. This way we can take the one from 4/09 and 9/08 and see what is happening. Then devise a plan. If it is pallitave care so be it, if something else can be done then let's get busy. I am meeting with the Oncologist only and she is Knew since I fired my first on in August when he sent me ome over a 3 day holiday weekend with at chemo tak-home-a-sack only he made it 4 days because he was taking the days off I needed the extra day of fluid and wound up in the hospital again. He blamed my support system and I fired him.
I will post the results of Weds meeting. I have been fighting a fever, tonight it was 102. I want to feel better and spend more time outside.
Keep praying and being hopeful. Positive thining.
Patty
I'm glad to hear you got the scan. I'll be looking forward to hearing what it shows. I'm proud of you for sticking to your guns. It never hurts to ask what can be done..all they can say is no. Keep us posted!!
Patty:
(1)Please remember to ask about "Induction Therapy". They should be able to look of the "Tax 324" study. Also, I've noticed that there are a numerous other new studies using different combinations. Maybe?
(2) My ENT was able to put a small line, with a light bulb at the end, down my throat to see my epiglottis and larynx. Maybe your ENT can help?
You are in my nightly prayers. Stay positive and strong.
Sandy
Sandy, ever time I have an appt with either my Oncologist os the surgeopn tha did my implants, they put that scope thru my nose, both sides and into my throat and chek me that way. It is a good tool and they can see what is occuring if anythng.
Patty,
I'm fairly new here and I have just read this thread and am truly just amazed at your wonderful spirit. My mom is dealing w/her fourth time w/this stuff and I thought she was strong. I think you are doing a fantastic job of standing up for yourself and of trying to enjoy life around you. I totally agree that I would want to know exactly what was going on - good or bad and think honesty is the least the docs can give you. I'm also glad to hear that the hospice folks were so positive - good to know they are on your side! Hang in there and keep a stubborn streak in there with all the good you have as it comes in handy sometimes. I will be watching for more posts from you and keeping you in my prayers. Lots of love and hugs to you - feel better - Nancy T
I have received some information from Patty. She would like me to share the following message with you:
Patricia sent you a message.
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Re: today
The CT scan showed some good news, but mostly not so good news. My airway and artery are not threatened now, but the tumor is not responding tot he Erbitux and is getting larger. It has broken through my right jaw now.
Originally we removed my left mandible, but once this darn cancer found healthy tissue in the right side of my neck it went there and has now taken over. I have months according to the doc.
Got you in my prayers Patty.
There just are no words. We share your sadness Patty.
Donna
Patty, there really are no words other than I am truly sorry and you are in my prayers.
Patty, that is such sad news. Hopefully they can get your pain under control so you can enjoy those months to the fullest. Will be thinking of you
Take care,
Eileen.
Patty, I'm so sorry. You are in my thoughts and I will definitely be keeping you in my prayers. I, too, hope you will be able to take in everything you can to live these months to the fullest and remember that God is with you every second of the way.
Nancy your mother does indeed sound like a very strong lady. That must be where you get the strength to take such good care of her.
Thank you each and every one of you for your supportive comments. David it is good to hear from you.
Hospice intake just left and we had a nice talk. I plan to set the record for the oldest patient in hospice if i can.
Today has been a good day. First I have felt pretty good all day and second things are looking up at the lemonade stand. Last night I put out a request for painters and organizers to help me to get the house ready to go on the market. Well starting tomorrow I will have folks to help. Carolyn and I will be having a garage sale at her place after the house looks like something from HGTV. I have been able to locate new homes for all but one of my dogs so far (this has taken several weeks) and my friend that is helping me with this effort has promised to keep Buck until the proper home is found for him.
The neighbor farmer wanted to buy my house prior to when I bought it and is still interested. Once the painting etc. is finished and I have an appraisal, he told me to give him a call and he will make me a fair offer. Then I will relocate with one of my furkids to my sister's house and we can look at our options again if need be.
I am very grateful to my Heavenly Father who is guiding my through this journey. I am also so grateful for all of you very, very special friends that I love so much. I am going to finish this feeding and my sister and I are going to get some supplies for the party (tape, drop clothes etc.) while the puppers take a much needed nap. The farmers are out in the fields and the dogs are just having such a hard time with it.
I will talk with all of you this evening or in the morning depending on how tired I am later. I have promised not to over due it.
Luv
Patty
Patty, Im glad you were able to post and that you are feeling better today. If I was closer, Id be helping you with the painting and doggies. I sure wish I was in the situation to take one for you.
Having goals is a very positive thing to do. Ive done that since I got sick, always making short term goals. It makes me feel good knowing I am accomplishing things. Hope you feel the same.
Just please dont overdo it, take some time everyday to just sit and look at the sky, smell the flowers, pet the doggies. Those little things might sound silly but it can make you feel more serene.
Have a good day and best of luck with the painting.
Patty,
I'm so sorry to hear the latest news. I will certainly keep you in my thoughts and prayers, and remember miracles do happen!
Just remember not to overdo it and enjoy each day, and like Christine said smell the flowers, enjoy a rainbow, and play with your dogs. And don�t forget to stop in here to say hello also!
Hi Patty- I am amazed by your strength.... So sorry to hear about the scan. I'm so glad that you have such a strong support system. It must be of great comfort to have such wonderful people surrounding you and helping you deal with all of this. Try and rest and just everyone pitch in to tie up loose ends for you....Everything will fall into place.
You are a very loved woman. I wish there were better words or things to say that were more uplifting or hopeful in some way.
Just know that your attitude and fighting invincible spirit are an inspiration to many many people. LOVE kate
I sure am glad that I have the well wishes of you all. I am lonesome and not have as good of a day today. The hospice nurse will be here soon so I can meet her. Maybe I will feel better then.?
Patty
Did you get my message Patty? I will be =here for you anytime you need me.
Hey there. It's funny how you can be lonesome-sometimes even when you're surrounded by people. When you feel lonesome just remember we are all here surrounding you with love and hugs and wishing you all good things. I'm glad the hospice nurse is coming today - she may end up being your best friend and ally. I think being the oldest person is hospice is an awesome goal - go for it!!! Hope your day improves. Sounds like you've got a lot going on - git 'er done and take care.
Love - Nancy T
Hi Patty,
I wish I was close to you I would give you a big hug.. then I would pick up Christine and we would come and paint with you. We would understand when you feel cranky and don't want to talk:)
How was the hospice nurse? I have heard wonderful things about hospice. My uncle and my husbands aunt both had hospice care and had wonderful experiences.
Love,
Suzanne
Patty, I wish I was closer so I could help and visit with you. It would be alot of fun having a painting party. Im a lousy painter but sure do put my all into it. Suzanne and I would help you and we would cheer you up. Especially Suzanne, she is very cheery and peppy too
Just remember anytime you are feeling low, you have a whole group here in your corner.
Patty - I'm too tired to read all of the posts...what kind of dog do you have that you've not been able to find a home for?
Paula
Christine..you are sweet as pie. My husband saya my painting skills aren't too hot but I think they are ok!!
Patty, Christine is right...we are here to support you morning,noon and night. Whatever you need.
xoxo
Patty
I might be thousands of miles away, but I am always thinking of you and wishing I was able to be there to help support you in whatever way I can.
Karen ((hugs))
Patty,
Want to add my thoughts and best wishes to you from the same part of the world as Karen.
As you are soooo far away am sending flowers in the form of photo's as mentioned a litte while ago.
Love and hugs
Gabriele
I sure miss seeing you here Patty and I bet many more do too.
Even though Round 3 ended for Patty on June 1,2009, I wanted to add a posting to her. (Catholic Heaven has ultra broadband wireless universal internet access). I miss you Patty,
My caregiver wife, who reads some posts, was touched by your stories about "furkids" and your sister and your extended family here on OCF. You were and remain inspirational, Who else would have such an effect on everybody that a dire announcement of a inooperable recurrence would trigger such diverse responses. All of them comforting not only to you, but to others "dealt the hard hand" of cancer coming back,
REQUIESCAT IN PACE ET AMORE
charm
Awe man I feel so terrible. She was my buddy. I just had a message from her and she told me she was just going to be outside with her dogs in the sun when she got strong enough. Damn it all, too bal we have no idea when will be. For some reason, I just had to go in the woods behind my house this morning and then to a stream I have that runs thru it. I must have taken that walk for Patty because I had no reason to got. Sure gonna miss you Patty and be lonesome. Let them see how special you are in heaven and let them know how much you were loved on earth by people like me. Sitting here with tears in my eyes. JUst to exchange one more email. can't see so I better get out of here,, Patty these tears are for the laughs we had.. Farewell until I meet you there when I hit that 100 we talked about..../.
Patty
You are such a wonderful person. I will miss you.
Sandy
Well this has been the day for tears. Here is a link to Patty's obituary. She was beautiful inside and out and I will miss her so much.
http://www.legacy.com/sj-r/Obituaries.asp?Page=Lifestory&PersonId=127973704
Thanks for thr website to the funeral home. I went immediately and posted,.
I also want to thank you for the link to the funeral home. I posted a message and it was really nice to see a picture of Patty. I will miss her positive support and cheerful attitude, but am very grateful to God that she is no longer in pain. What a shame.
This link was to the guest book from the newspaper obit. There is also another guest book on the funeral homes website:
http://www.facebook.com/ext/share.php?sid=194230750343&h=0UrK7&u=Nitzh&ref=mf
Sad to hear of Patty's passing. She must have really not been feeling well these past few weeks. I am glad that she is no longer in pain.
I miss you already Patty.