While reading the following, please bear in mind that I hold a power
of attorney for Peggy's health care, and this enables me to receive any
and all information about her care and to speak and act on her behalf,
which, with her added verbal permission, I often do.
As my regular readers know, Peggy has stage four pancreatic cancer and, after months of chemotherapy, was scheduled to have a
distal pancreatectomy/splenectomy (aka the removal of her spleen and
lower pancreas) on January 27th. Because the cancer has spread to a bone
in her hip called the ilium, she will have to undergo a second surgery
to remove that tumor. Radiation treatments had initially driven the
cancer in her hip into submission, but now that it is showing signs of
becoming active again, speed matters, both to keep the cancer in her hip
from becoming too big to remove, and to keep the pancreatic cancer from
spreading beyond her hip. Last week, she learned that her surgeon's
website had listed her January 27th surgery as a "robotic (XI) assisted
laparoscopic pancreatectomy
duodenostomy whipple." This threw us into something akin to a blind
panic because we didn't know if her insurance would cover the last
minute change to the correct surgery. Fortunately, insurance had already
approved the correct surgery, and no one at her doctor's office seems
to know why her doctors' website named an incorrect surgery. This brings
us to this week...
Peggy’s
surgery was scheduled for 12:55 on January 27th. At 2:00 o’clock, a
nurse manager named Laura Smith came to Peggy’s room and said that a
prior surgery was taking hours longer than expected, and that Peggy’s surgery
had been cancelled. As Peggy collapsed in tears, Laura asked that we
call her if there was anything she could do; handed us a letter stating
that the hospital “would like to express sincerely (sic) apologies for
the cancellation of your surgery/procedure today:” and left the room
without saying another word.
When we got home at 3:30, I called Laura to ask that she use whatever influence she has to get the surgery rescheduled as soon as possible. She said that Peggy’s surgeon, Diego Muilenburg, had already promised to do the surgery ASAP, by which he meant late this week or early next week. When I said that Diego’s “ASAP” in December had meant six weeks, and I was afraid that we might face another long delay, Laura repeated what she had already said. She did not seem pleased to hear from me.
Diego called yesterday evening at 6:30 and gave Peggy a tentative date of February 13th for her surgery and said that he wasn’t at all sure if he could do it then because he didn’t know if a robot would be available. I immediately wrote to Peggy’s oncologist, and asked if he could find her a surgeon who could operate sooner. His office called this morning and said he could not. Diego’s office also called this morning and confirmed the February 13th surgery date.
By
this morning (January 28th), Peggy’s low mood had rebounded. It’s typical with us that
she falls fast but recovers quickly, whereas I might appear to fall
slower, but once I am down, I don’t soon get up. I work very hard and
very well in many ways to support Peggy, but maintaining a buoyant mood
is more than I can do. Because getting this surgery done before the
cancer spreads further is Peggy’s only shot at life, I think it could
have been done sooner than two months. Whatever the reason it wasn’t, I
see no evidence that her surgeon places much importance upon her life.
When he called her last night, she complained of having to go through
the extensive pre-surgical preparation a second time. When she mentioned
the fast and laxatives as among her complaints, he didn’t say he was
sorry that she had to endure that. He instead said that not ordering
something so completely unnecessary would be a learning lesson to his
team.
12 comments:
Oh gosh, I'm so sorry. That's such a let down. Hope it all works out for the 13th.
I’m so sorry your going through all this. I can’t imagine having to worry about insurance, less than friendly doctors and the constant waiting.
I hope you both find time to just sit and breathe. As hard as it is, and I know exactly what your going through, it’s much easier to get to the other end of the surgery for your mental health. And right now you especially need to take time to look after you so you can look after Peggy.
I am so unhappy to hear about the new problems. Please give Peggy my love. It seems to me that perhaps the doctors could postpone a less urgent surgery to take care of her. They could express apologies to someone else. Try to hang in there Snow. Many of us are rooting for good news.
Please consider coming to India for this surgery. I really mean that. Surgeries here happen in days, not weeks. No one waits. Even if you pay yourself, with the current dollar rate, the cost, I am told, is very low compared to the US.
How many surgeons are qualified to perform a Whipple surgery in Oregon. Is OHSU a possibility? (Insurance)- Kris
How frustrating and incredibly annoying much less having to repeat the pre surgical preps and the worry about the cancer growing! I have been following your story from afar and wish Peggy the best. So unfair you have to endure this
I was hoping today to read that the surgery was done and Peggy was on the road to recovery
This is Sue from Michigan(escape from Cancerland). Blogger is not a friendly app
"Please consider coming to India for this surgery."
I knew someone who had three joints replaced in India and spoke well of it. However, with Peggy's surgery happening next week and me not even having a passport, we'll have to stay here this time.
"How many surgeons are qualified to perform a Whipple surgery in Oregon."
I wouldn't be surprised but what there are more than two dozen such surgeons in Eugene alone, but it can take quite a while to get listed with one. For example, it would take a month to see someone at OHSU (Oregon Health Sciences University) in Portland, so with Peggy's surgery being next week, we'll be staying here. By the way, Peggy isn't having a Whipple Procedure, her tumor being on the opposite end of her pancreas.
Sue, long time, no hear. I'm so glad you visited.
"Hope it all works out for the 13th."f
That is a worry.
"And right now you especially need to take time to look after you so you can look after Peggy."
I feel like a car running on fumes. If ANYTHING bad should happen (a cat get sick, the furnace quit, the refrigerator fail, or, god. forbid, the surgeon catch the flu, I don't know how I would cope).
"It seems to me that perhaps the doctors could postpone a less urgent surgery to take care of her. They could express apologies to someone else."
Given that she has already waited seven weeks, I should think so too, which is why I suspect that if she was 24 instead of 74, I think she would have already had her surgery. Although I understand why a 24-yeard-old should have precedence, other factors should also be considered, and, goddamn it, Peggy lives a clean life and is doing everything possible to help herself survive. She deserves better than this.
Of course, one holdup is reserving a robot, and I have no idea how many the hospital has.
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