1

(27 replies, posted in General Discussion)

Percy, simply put....you are so loved!

2

(8 replies, posted in Members' Cafe)

Percy, I was elated to see your smiling face, you made my day! I am with you my friend! Both would be good forums. For Easter I am sure you will have all your family there, family is the best RX, with a  holiday or not. I took my 17 yr old Grandson for lunch (Chinese food) yesterday as we have these enormous conversations, he and I. He graduates H.S. the end of May and will be going to ASU Polytechnic School and going for 2 majors. My Granddaughter Graduates May 10th from NAU with a 3.8 and just got the job she has been wanting for a year! She also had double majors. Sorry didn't mean to go off about my grandkids, just can't hold it in.
I truly hope you are comfortable and honestly was thrilled to see your post!

3

(8 replies, posted in Members' Cafe)

Thank you Mr. & Mrs. Carl! Hope things are good at your house. I have not talked to the powers that be yet (not meaning Teddy!) ha, ha but let's see what happens. My bottom line is that we would hope everyone would post their responses, if they have any by posting them on another site so that the HOPE and MIRACLE posts can just be read straight through. I hope I am expressing myself right, you never know with this Remicade! It's much like Chemo brain. My family has learned to fill in my blanks and I always say thank you! Then again it could always be worse! Happy Easter. Maybe my little Bunny will throw down some eggs to me. I hope they are cooked!!!

4

(8 replies, posted in Members' Cafe)

Why thank you Sir Gavin. Hope you and Mum have a lovely Easter tomorrow! May the Bunny bring you a gourmet dinner!!!!

5

(8 replies, posted in Members' Cafe)

Brenda hope you are doing well and you sound like it. Good to see your smiling face and a very Happy Easter to you as well! May all the eggs be golden and full of Miracles!

6

(8 replies, posted in Members' Cafe)

I just read a HOPE and MIRACLE Story by John Thomas this morning who is doing quite well. It gave me an idea that perhaps we could use a Category ONLY for stories of HOPE and MIRACLES! Return answers could be under General or something so that when someone is looking for that hope that they need they can just read about HOPE and MIRACLES with no in betweens........
What do you think?

John Thomas, Happy Easter to You and yours! I love it when I wake up to this kind of post. I am so over the moon for you and how you progressed! We so need these kind of HOPE posts! Best wishes and continued good luck.

8

(8 replies, posted in Members' Cafe)

Catherine, so happy to hear Mom can make the trip to VA. Spring is also the time for new beginnings! Best wishes for the trip. You might want to ask her ONC if he knows anyone in that area just in case. Safe travel!

9

(26 replies, posted in Introductions!)

Dear Chrisna, first the good news. We DO have a survivor who had his surgery here in Phoenix with a Dr. Koep and Bob is I believe in his 15th year!!! We have a few who are around 10 years in survival ship. The best promise for a cure is surgery but CC has a mind of it's own and we just don't ever know. It is truly a monster riding a roller coaster. Caretakers and patients do their best will they let go of the worst and live one day at a time. My husband had a Whipple surgery and clear margins and 5 ONCS said no to chemo or radiation. It returned 3 years later and he did have radiation then in order to have Cyber Knife. C.K. bought him  2 very good years and CC returned again. Actually it came 3 X to the same place. We, enjoyed each day to the fullest we talked and talked and were always together and when the time came we were ready. Well, as ready as one can be. I totally believe attitude, hope and love got Teddy through those 5 years. I like to say one needs to be realistically optimistic. 2nd and 3rd opinions are extremely important. Odds of surviving without intervention such as chemo or surgery I believe would give no one much of a chance. I believe that surgery is always internal and as for the stents the plastic ones need changing about every 2 - 3 months. Simple procedure. I have not heard of GCMAF? A lot of hospitals have a Board but it is important too to know you have a TEAM! Mayo in Rochester is an excellent and the reason everyone hopes for surgery is that it is the best way to go for a cure. That's why we get so excited at the word surgery. Once a decision is made and either chemo or surgery is decided on, your fright will turn to fight! You never know how strong you are until "strong" is the only choice you have!

Dear Crissie, I am so sorry about your Dad, a patient somehow knows and you should call the ONC and tell him just how Dad is feeling.
Hospice is easy. If the ONC agrees he makes the call and they come out usually in a day or two and will interview you and Dad. They then become your go to people for everything. We had them come out beginning August 15 and Teddy made it to Dec 10. They bring the necessary Meds and anything else you request. I ordered a hospital bed and set it up in the bright airy living room where the big TV was. Also plenty of room for the Nurses and visitors. I also ordered a walker and later a wheelchair and Oxygen. The Oxygen actually relaxes the body and aids in pain relief. With a hospital bed it is more comfy and if he feels weak he can use the rails to get up and down easier. One more suggestion, see if they have a lambs sheet. It really is soft on the back for patients laying a lot. They usually start out with visits 2 X a week and increase visits if necessary. Is Dad home alone? Best of luck and let us know what happens.

Dear Cute Duke.....I totally agree with you. When Teddy decided no Palliative Chemo (as it would only extend his life a month) we gave each other our all. He had such a strong mind and no one would know not even me if he was scared. He steeled his mind and that was that. His only request was that I don't cry in front of him so I didn't as it seemed so little for him to ask of me.  Having only been married 16 years, even at our ages, we were never apart except to go the bathroom. It was so beautiful, especially when he would tell Hospice Nurses that we were on our Honeymoon. From taking this Journey with him I realize that there is no fear but fear itself and when it is time for me I will be as ready as he was as I know he will be waiting for me and I am sure the first thing he will do is take me to his restaurant in the sky. I mean a Sicilian loves restaurants!

12

(9 replies, posted in Good News / What's Working)

YIPPEE for Mark and Kris for being "well" DONE. Music to my ears. Keep the good news flowing! I have to do one more YIPPEE!

Gavin, I am sure you made that airport run between their visits to Mum! LOL

Duke, you really crack me up!!!

Well, they are cute....but soooooooo young. Even my Grandchildren 4 of which have Graduated College don't make me feel old BUT when I meet a 41 year old Doctor wow I feel ancient. Good part is at my age I have no more fear of Principals, Cops or anyone in authority! The Rebel Grandma. Honestly I have always marched to my own beat except when I was married to Brand X and didn't realize what mental abuse was. But I learned and grew and do not fear anything. Wait, still fear the Dentist! Love it when my own kids (53 and 51) tell me how strong I am. Ok so I never want you to say never so I say anyone named Duke has to be cute but in a very masculine way and you have a great outlook on life and a great personality. Be yourself, all the others are taken!

16

(9 replies, posted in Good News / What's Working)

HA, HA, HA Duke great post. First I am extremely happy for your progress and 2nd I get it about all the weirdo's. Yes, Spring has sprung and time for new beginnings and lots of healing! It's already in the 90's here and they say its going to be a hot summer. Duh, it's the Desert! Keep on Nuking it Duke!

Not talking about a hair cut here but this is my newest update.

#1   ONC called me and said my ONC Surgeon does not want to wait 6 months for my next MRI with contrast for the GIST Cancer I had but wants it repeated in 3 months. I am 5 1/2 years clean. But because of the shadows the radiologist saw Dr. Runfola wants to be sure. I feel so blessed for him!

#2   Saw a Neuro Surgeon for 2nd Opinion on the thing in my head and he was
very upset that they did not do a Scan with contrast as you almost can't see anything, so I should hear from an Imaging Firm and have that done hopefully next week. I really liked him and will do what he says. He did say it did NOT look like Cancer nor a Meninginoma.

#3   Had my 6th Remicade infusion and by jove I think it's working. Afraid to say that too loud. Next one June (every 8  weeks). Bless my a--! Seriously

Just an aside: My Neurologist is Dr. Mortazavi, Gastro is Rohit Mahajani (looks like Dr. Javle) ONC is Dr. Lau and Neuro Surgeon is Dr. Titeen Andalkar. They all laugh at me now at how I can rattle off all their names. I tell them why not? They are my TEAM!

Hello to one of my best guys! How the heck are the 2 of you doing? So glad to hear from you as this reminded me that I forgot to update last weeks 3 Doctors. Gosh I miss you and I sure hope all is going great. Sometimes I think no news is good news but better give us an update or I will have to bring out the wet noodle for 25 lashes! Luv to you both!

Julie, I just read your other post and I love your uplifting messages today. Makes me feel good all over.

YIPPEE, Julie, it sounds like you have turned the corner!!! I can see it in your writing and you are so right, that is a true FRIEND! Good for you, girl. I know this sounds crazy but this site is what has done it for me. I wanted to pay it forward from all the help I got with Teddy and I became addicted. I could probably go almost anywhere in the World and meet up with someone from this family! I find that so amazing! For a while in December I was feeling down and tired out and told everyone I was taking of about 2 weeks. Well that lasted 2 days and I was back on. I wish we didn't need this site but if I am to have an addiction I can't think of a better one. I am so proud of you and glad you posted about lifting oneself up. Go, Julie, go!

21

(8 replies, posted in Members' Cafe)

And...one day you will be sitting and looking at the tree and you will feel your Aunt around you and perhaps a bird chirping at you from the tree.

Ha, ha, Randy you said it! I was so surprised as the Grandkids here are 17, 19,22 and 25 and you should have seen them run for the Afikoman! I think aside from the Matzo Balls that is their favorite part. It does get expensive though as they get older. I was so exhausted, there was 8 of us but it is so worth all the work! Hope you have a wonderful Seder!

23

(8 replies, posted in Members' Cafe)

Amen to that, and I am so sorry about your Aunt, she sounds like she was an extraordinary woman.

Those we love must someday pass beyond our present sight…
They leave us and the world we know without their radiant light.
But we know that like a candle their lovely light will shine
To brighten up another place more perfect…more divine.
And in the realm of Heaven where they shine so warm and bright,
Our loved ones live forevermore in God’s eternal light.

Gav, I ended up doing it. Made the best ever chicken soup with 28 Matzo balls , Phil (son) ate 3! Beef brisket, sweet sour mini meatballs and Robin made potatoes and Devil eggs. All 4 kids were in and it was so nice! Hope everything is good at your end of the Globe!

LisaS, YIPPEE, you are on your "GOOD" way! I am sure there is some anxiety about 'finishing' all you had to go through in as much as you hated doing it, you knew it was working and now you are done. Hope what I am trying to say makes sense. One of those occasions where I know what I am trying to say but will you? LOL  Try to take one day at a time, I know easier said then done.
Enjoy your new freedom and eat, eat, eat!