FreeBird

Hello FreeBird, how are you and your Dad doing today ?

FreeBird:

I want you to know viewing your journey has been incredibly helpful. My husband seemed fairly healthy when he started having pains in his chest. Once they ruled out heart issues (which i was prepared for) and found cancer, my life spun out of control.

As your father, the oncologist said 6 months without chemo, 8 months with chemo is the average. I kept leaning on the fact that 50% lived longer, and we would be in that group. But you always wonder what will happen next, how will it happen.

Watching your journey and the process, has given me a perspective I needed. My husband, like your father, felt that the intense side effects of fatigue, made any additional time, in his mind useless.

So I am sure your postings have been incredibly helpful and cathartic for you, but please know you are helping many, like me.

So thank you for your posting!!!

How is your Dad today? Thank you again for all your posts. You help us (and obviously your Dad) a lot!!

thank you for your help! I was told that he has a slow growing cancer and its at the tail of the pancreas, I think they call it islet tumors and one is the size of a golf ball. He was also told that he has five spots on his liver. I am by no means a doctor, but I just could not get pass the doctor telling him they will wait and see and in the mean time we will give you a shot (chemo) that will help. He lives in the Atlanta area and there are many doctors and I know they are human and can make mistakes too. It just does not sound good to me, i feel like he needs to take a more aggressive line of action. I just don't know! I feel helpless for him.

Thank you Freebird. The neuropathy started while I was in the hospital. Flagyl was one of them, plus a ton of other broad spectrum antibiotics. So many in fact that I had a reaction, rash all over my body. Thay had to stop a couple of them. I can't seem to get any doctors to come out and say that the neuropathy could have been caused by anything that they did. I went to a neurologist today, he is scheduling some test in a couple of weeks. It is just so hard to get any answers. All they want to do is give medicine and take money. Myelodisplastic syndrome is nothing to fool with, it is just as fatal as any type of cancer, no tumors, but the bone marrow quits producing white,red, and platelets. I just want to live what's left in my life as useful and pleasant as possible. Seems the more they do to help me stay alive, the closer I get to the edge. Sorry, i'm just disgusted.

Freebird, I am praying for you and your father. He is so fortunate to have you. These are many of the symptoms my
Mother went through. She also had pancreatic cancer.

Ha ha! Loved your response to my being ignored by women...but what you don't know is the response from men stopped long ago, LOL. (After I hit 200+ lbs and 50+++!) I noticed you've had some rough times lately? How are you doing today?

Thank you for the Easter thought
The day after is April Fools
The day on which I will be caught
Flushing my port instead of stools.

How is your Dad doing today?

Thanks for sharing details of PET Scan. Oncologist is wanting to start him on chemo immediately. He as been on Gemzar on and off for the last 5 years and if these are cancer it did not help. You seem so informative so I have another question for you. My husband was in Rehab for about 6 weeks. When admitted they did a TB test. No one ever came to check results and I forgot about it. After about 3 weeks I noticed this very red slightly raised spot on this arm. When it dawned on me that it was were they did the TB test the nurse said it was nothing - of course this was 3 weeks later. My grandson had a positive TB test this past SEpt and has been on medication. Are you always sick with active TB and could these spots on the lung be TB?

Hi Freebird - Greg W suggested I contact you about the question I posted last evening related to pancreatic cancer spreading to my bones (or at least one bone, so far). Do you have any knowledge or experience with this? I am probably going to contact experts at Johns Hopkins today to see if I can get in there again. Certainly the doctors at my local hospital in No Virginia don't have firsthand experience with this. Any suggestions or information would be very helpful. Thanks, JMS

Hey there! Read some wall posts and you mentioned the DC area and caring for your dad w/ pancreatic cancer. I am a caregiver for my mom, who is 66. She was diagnosed in 2007 with a NET...was doing good but now is just in so much pain. I hope everything is running smooth your way. So hard to find people who can relate to this rare cancer, so it is always good to talk to those who know!

Thank you that has helped a lot. X

Hey Freebird I haven't been on here for 2 months ever since Grandma passed away but I was looking through my email and started thinking about you and your dad. I hope he is doing ok. I also hope your doing ok. How is things with your dad?

We r going thru this with my father ,same stage,2nd round of chemo. He is showing signs of chemo brain,memory loss etc.said he saw my grandmother who died of cancer 30 yrs ago.

Freebird I was in this situation. With my mom.She had Pancreatic
Cáncer.You and your father are in my thoughts. And prayerI spoke from my heart to my mom. Your father is fortunate. To have you.

FreeBird how is your Dad doing? I'm sorry I haven't checked in sooner. Hope he's comfortable and you are doing ok as well. Thoughts and prayers being sent.

I have worked with Hospice in Madison WI and now in Stockton IL. It is a great organization I highly recomment it to anyone. I agree with your father that quality is more important than quantity. I just have to convince my children of that. I was diagnosed with Pancreatic Cancer in Nov. No one in my family has ever had cancer. So this news is tough. I am just starting chemo on Friday. Glad to hear that your Dad didn't have a lot of side effects. I wish him the very best. God Bless

FREE BIRD ATIVAN WORKS GREAT, USE THE MORPHINE DRIP IF NEED MORE GET IT ASK HOSPICE NURSES 24HRS ADAY CALL THEM.. DONOT LET MISERY TAKE HIM IN PAIN.. USE THE DRIP USE THE ATIVAN AND WHAT EVER THEY GIVE NOW. MEDITATE LET GO AND LET THE POWERS TO BE COME AN DO THE REST. DO YOU WANT A MONK..HAVE YOU READ THE BOOK OF THE DEAD.. IT IS ALSO ON CD..LET HIM LISTEN TO IT IF HE IS OPEN TO GOD AND THE HIGHER POWERS TO BE..BLESSINGS MY FELLOW SOUL ROXANNE

Hey freebird-Lynard Skynard-how are you doing and how have you been? kimg09

BLESSINGS MY FELLOW SOUL.MY MOTHER HAD PANCREATIC CANCER IN THE LATE 90s I AM SENDING YOU TONS OF BLESSINGS. YOU ARE DOING THE RIGHT THING, EVERYNITE AN DAY THAT IS HARD WILL BE LAUGHTER IN YOUR HEART DOWN THE YRS TO COME. ALL THE LITTLE THINGS WILL BE MEMORIES TO HAVE. IT IS A LONG HARD JOURNEY YOUR GOING DOWN NOW. I UNDRSTAND, WE TOOOK CARE OF MY MOTHER AT HOME WITH HOSPICE CARE. I AM A TRUE BELIEVER. IN HOSPICE CARE AT HOME. IT IS HARD BUT THE JOY AN MEMORIES IS WELL WORTH THE INNER SADNESS CARE GIVERS HAVE.. BEST SOLUTION FOR YOUR NIGHTLY CARE FOR YOUR SILENCE TIME IS EAT ICE CREAM. ALL YOU WANT.. SLEEP WHEN YOU CAN. AND LOVE...LOVE ALL OF IT. EVEN THE STRESS WELCOME THE LIFE JOURNEY YOUR ON. ITS A PATH THAT WILL LEAD YOU TO INNER LOVE YOU DIDNOT KNOW WAS HERE.BEING BUDDIST I UNDERSTAND THE UNDERSTANDING YOU TOO HAVE. I AM A BREAST CANCER 3 YR SURVIVOR AND WITHOUT THAT JOURNEY WITH MY MOTHERS PANCREATIC CANCER I WOULD HAVE BEEN BLINDED BY THAT WORD CANCER. BLESS IT AN LET THE LOVE CARRY IT AWAY..YOU TO MUST TAKE TIME FOR YOUR INNER SELF. YOUR FATHERS SOUL NEEDS YOU TO BE FREE AND LET HI, GO TO THE BEGINNING LOVE WILL CARRY HIM BACK TO THE SOURCE. HIS NEXT JOURNEY HE WILL BE FREE FROM CANCER TO GROW ON A HIGHER LIMB OF THE TREE OF LIFE.I SEND YOU BLESSINGS OF LOVE AND FOR YOUR FATHER TO RECIEVE BLESSINGS SO THE LOVE CAN CARRY HIM ON HIS JOURNEY.YOUR DOING A GREAT THING. TAKE A WALK ON THE BEACH LET THE WAVES CARRY YOUR THOUGHTS BACK OUT TO SEA AND THE POWER OF LOVE COME INTO YOUR RECIEVORSHIP....LOVE YOU IN THIS LIFES JOURNEY.YOUR A GOOD SOUL..GREAT SOUL..ROXANNE

Healing energy to you and your father, you are in my thoughts
and prayers.

Hey-you noticed the backround, you are sharp FreeBird! They have been and always will be my fav. This is a very old posterboard from 1968, I got it from a customer where I used to work. When I was about 17 my walls in my bedroom were really white-so I painted a perfect ZoSo in black, it was beautiful. Those were the days my friend! kimg09

My oncologist doesn't have me get a full liver panel yet. Normal weekly blood tests are cbc and cmp and an inr to monitor warfarin use. I guess I should ask about liver function at our next appt

Best wishes to you and your father, I like your video wall.

Freebird, just an addendum to my note earlier; Hospice is not going to come in and take over. They are there to help, and they will encourage your spouse to do whatever he can do himself! The benefits are unreal. Please consider it. Most people ask later, "Why did I wait so long"?

You've been quiet lately. Hope all is OK.

Thanks for posting the link to the Cancer society page on CIPN.

Hey Freebird, just wanted to see how things were going with you and your Dad. Happy New Year!!

Just checking on you and Dad, how's everything going?