highsmith
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Kentucky Jack-
We, too, sought another opinion because I felt Dr. Tan was “too” conservative…he certainly treated us and warned us it may kill my dad (and almost did twice in five weeks) but that is the job of an oncologist! We did ultimately switch to Dr. Andrea Wang-Gillam as primary oncologist for my dad from Dec 2010-March 2011. She was proactive in all treatment and we also sought a fourth opinion in Dr. Wells Messersmith (University of Colorado Hospital , Aurora) to ensure there was no other tx. It seems between Barnes and USC there is little on the i-70 corridor in between! He assured us he would have recommended the same course of action and treatment.My dad passed away shorthly after the Colorado consult, so we were never able to follow up. I loved Dr. Messersmith’s bedside manner and thought into the consultation!!! If anyone ever wants further details on Barnes or University of Colorado, feel free to email me at staceyhighsmith@gmail.com.
Stacey
Mark,
I am so sorry to hear about the loss of Lori. I was the caretaker for my dad for 14 months. I hope your family surrounds you and you can relish in the memories
Stacey
heartdoc,
I am sorry for the progression. My dad was 62 and in otherwise fabulous health, although retired for seven years. He had a success Whipple, but only made it 13 months, 1 week. We had five opinions and looked for every option possible. We never gave up hope! We were so lucky and only had 68 hours of hospice, which was a blessing to us and my dad.
All the best to you and yours. My daughter, who is 5, understands Papi is no longer here on Earth but stills asks about him…
Stacey
Pam-We have a shower chair, cane and walker from rehab last year. You are right, it is huge and will help in the days to come.
The last eight hours have been a miracle! I have taken half the weight of my world off my shoulders and I think I have exhaled more today than in the last year. I almost am pained I did not call last week, but am trying to be glad that my dad is relieved of the pain and anxiety and is resting comfortably.
Hospice had a nurse here for three hours, delivered the hospital bed and wheelchair and had the social worker call by 4pm! I was absolutely amazed at the speed and grace of all involved.
Thank you for all the support.
Thank you to all! Hospice starts tomorrow. My dad fell, for the first time, this AM and I knew that I cannot do it alone anymore. He is hallucinating more and more and in pain and is on the verge of not being able to bathe himself. He barely made it out of the shower today. Luckily, he just gashed his elbow and back in the fall, nothing broken.
I already feel better for making the decision to go forth.
Kim,
I am so sorry. My dad, too, has been fighting Cc for 13 months and is getting worse. We are meeting with hospice next week. I moved from Denver to take care of him last year and barely see my five year old daughter. I am so tired and worn down I cannot put it into words. I am sorry so many of us feel this way, but I am grateful for the year we got with my dad, that we would not have gotten without all this.
Alison,
I think the hardest thing for me, caretaker to my dad (62) is you have no idea what to expect.
My dad is 11+ months into this battle and it has been a BATTLE. 12 hospitalizations from 4 to 44 days in length (the Whipple and recovery was the 44 day one), several blood infections, all kinds of open wounds and tubes and fevers and we begged for chemo and sought out a second oncologist to get it and it has been the battle extraordinare!!
I don’t know where we stand but I do know we have made it 10 months longer than we would have without this fight. I have,basically, moved back to St. Louis to care for him 24/7. My dad was luckily retired for several years before this, so he has never had to deal with that aspect. It has been overwhelming…all that said, we would do it all over again. He has gotten to see my daughter blossom from 4 to 5 and my sister had a baby a week after my dad had his first (and three more) surgeries.
You just have to take what comes to you day by day and work from there. We have laughed and cried at some of our circumstances, but it has been joyous to have the time.
Hang in there, read everything you can, ask questions and try to live each day with a little more joy.
Stacey
My dad has a constant runny and/or stuffy nose. It seems worse with chemo, but now he has had three weeks off and still has the symptoms. He also sneezes more than normal.
Susan,
I have asked every time, but my dad has been turned down for every trial we have tried. He had colon cancer in 2009 and has UC and PSC, so he seems to be excluded. I will ask again tomorrow.
Lainy,
Thank you. We have an appointment Tuesday to speak in person and also look at new labs. Given my dad has had a couple cholangitis flair ups and three blood infections prior to chemo and post Whipple, they likely would have happened anyway, but he has been really sick with chemo side effects. He is almost three weeks post chemo tx and he still needs zofran every eight hours to be able to eat. The IV antibiotics and blood have really pepped him up but those have to come to an end eventually…
Beth,
My heart goes out to you. I am so sorry Dave has taken a turn. My dad is a Barnes (Linehan, Tan, Chapman) patient and I have followed your story and, I am sure, passed you in the halls of Barnes last year. I hope you and Dave can savor the days and moments yet to come.
Stacey
Fern,
As seems the case with so many, my dad has had the CA-19-9 marker jump all over the place. Infection seems to skew it.
I have to tell you, the oncologists attitude seems disturbing to me. My dad has been incredibly sick the last eleven months and not once has anyone told him he is “terminal” nor have they ever blown our concerns off. He has been admitted 12 times in less than a year and we did the ER route once and every time since then, we call, report symptoms and get a direct admit to a room. Most of the time it is 2am and it has been an uncanny number of times on a Saturday or Sunday, without any issue.
Can you get a new oncologist? I would seriously consider switching doctors if you do not get answers.
Stacey
