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