Wednesday, January 13, 2010
I went into the small prep area with mom because there wasn't enough room for all of us. The nurses hooked her up to an IV which was good because she had vomited the night before as well as in the morning.
In preparation for the EUS she was instructed not to eat after midnight and only a clear liquid breakfast at 7AM. She couldn't keep anything down, there was no food in her stomach.
As the nurses are going over the procedure they asked my mother "do you know why we're doing this? why you're here?"
My mother looks at me bemused...then asks "why am I here?"
In any event, the part where they got to the procedure I noticed that they didn't mention the biopsy. I asked about it and they said they weren't sure and to ask the doctor.
Half hour later the doctor, a Pakistani man, came to her bedside. He ran through the procedure, the risks, how the nerve block works, side effects, and some aftercare.
I probed him about the biopsy that the DFCI doctor told Parveen he wanted.
"I don't believe I am supposed to perform a biopsy today. Let us focus on just the nerve block."
"I wasn't a this appointment, let me call my cousin to make sure the doctor explicitly requested a biopsy"
Parveen confirmed that a biopsy was requested. I approached the doctor again.
"Well, if we have time, we shall do the biopsy".
Fine. Your clinic is running late because of a complex case in the morning. Fine. Not our problem. My instincts told me that this was not right.
A nurse approached me and said
"There's a 'family member' out there who's asking a lot of questions. I think you should talk to her."
That 'family member' was my cousin. So I told her what was going on and immediately paged the DFCI doctor. He called back and spoke to Parveen. He stayed on the line until the endoscopist doctor came out.
We did indeed cause a ruckus. The nurses were all confused.
"Doesn't the daughter need to be here?"
"No! I want to talk to the doctor. I have another doctor on the line he wanted to speak to the endoscopist."
Dr. A (DFCI) specifically said in his e-mail that a biopsy was to be done. The endoscopist, when confronted said "we were planning to do a biopsy all along."
When Parveen was able to speak to Dr. A in the waiting room she said
"He was NOT going to do a biopsy. Thank you for speaking to him."
In the end Pakistani doctor came out to tell us "She did remarkably well. It has not spread to the stomach or small bowel. There isn't blockage yet of the common bile duct which could make her nausea worsen. We were unable to do the biopsy because of the vasculature around the tumor. There would be a lot of bleeding if we punched through the vessels."
Other things were said that I don't remember now but at least we tried.
The poor man did not know who he was dealing with. Go ahead, steamroll over me, see what happens. Yeah I look young, and naive but I have support and I won't just take whatever a doctor says at face value.
When my persistence did not work I called in the backup. I am glad we didn't have to break out the "big guns" which is my aunt. She would've cursed him out in his own language no doubt.
We had the support of the patients in that tiny little waiting room. Our arrival time was 3:15 and we left the place a 7. A very kind nurse took my mother all the way to the car. She was so good to my mother in recovery, gently putting her hair behind her ear, calling her name to wake her up.
The doctors at my department were absolutely correct: there needs to be someone there at all times to be an advocate for the patient. I'm glad that even though I'm tiny, young, and look like I can be talked into whatever...I'm not. And I have support. :-)
Today, one day after the EUS and nerve block my mother isn't don't too too well. The pain isn't bothering her. She was able to eat some soup broth, some ice cream.
When I ask her what's wrong, she's unable to describe it.
I was glad to be home with her today. I would've been very worried had I gone to work.
Tuesday, January 12, 2010
She went to the hospital for abdominal pain. Her primary care prescribed antibiotics and then she collapsed at work. Her co-workers called my aunt and she followed the ambulance to Mount Auburn hospital.
My mother went to the emergency room from work. Last year around the holidays the same thing happened so I thought that she may have succumbed to exhaustion, yet again.
After endless hours of waiting, the doctors said they suspected diverticulitis. Sounded great because you can recover from it, it happened to one of my professors, my best friend's mom. They are fine today.
The doctors ordered a CT scan to view her abdomen better. They kept us waiting most of the day as developments occurred. Several doctors read the CT and one of the doctors came in to tell us there was something causing pancreatitis; her ducts were enlarged. It was still light out when he came to tell us that. Then after an hour he said that there was a mass pressing on her organ causing the pancreatitis. Upon further review with doctors the team of doctors would decide if it was resectable.
At this point I thought it could be a cyst or some lump. After the sun had set my two best friends came by. My aunt, my friends and I talked and watched the Law and Order Criminal Intent marathon on the TV in my mother's room, making jokes about how ridiculous the show was.
One doctor came into the room a short while later to tell us more about the mass. Her first thought was that it's cancer. "It doesn't look like we can resect it at this point, but from what the CT shows the doctors are leaning towards cancer".
The plan was that my mother would be taken to MRI that night.
I remember meeting Natasha and Sujon at the elevators to tell them the diagnosis. That night they didn't take my mother down to MRI until midnight. She hadn't a thing to eat since 7AM that morning. Natasha and Sujon stayed until 11:15 while Parveen, aunt and I left at 10:30.
The following day, Friday the 18th of December they were planning on discharging my mother. Throughout the day I made phone calls to friends, Catie, and Kat mainly. My co-workers.
The oncologist came around 5pm. He took my mother's history, asking where she was from, if she had any other kids.
He told us that it could be three types of cancer: lymphoma, Islet cell carcinoma, or adenocarcenoma. The latter was the most common in the pancreas and the other two were a little more unlikely.
"If so then there is very little that science has to offer, unfortunately". When he said this all I could think was...yeah I know but...really?
A biopsy and an endoscopic ultrasound was scheduled for Christmas Eve at Beth Israel.
After many hours of weighing the benefits to my mother my cousin and I decided against it. A heavy snowstorm just passed through Belmont right before Christmas and Parveen, Jeff and I were shoveling the drive. She asked me
“What is the benefit to her to know that it's type a or type b? She'll still have that prognosis so what good does it do to her to stick a tube down her throat with a camera, a needle, causing her so much discomfort?”
I looked to Pubmed about everything I could find on Endoscopic Ultrasounds and their benefits and all such manner of articles. The figures showed no real benefit to the patient so I thought it best to spare her this on Christmas Eve, no less.
Returning to the oncologist's office for our 12 'o clock appointment my mother, my aunt and I were nervous. I don't know how nervous my mother was because she was just in pain and nauseous.
The oncologist walked into the waiting room and welcomed us into his modest office. I don't know why I imagined it to be bigger. There was barely enough room for the four of us.
I don't remember the exact nature of our conversation that day but I know that I felt calm around him. His voice, his mannerism, his ability to listen and let the patient and her family weigh things put me at ease. It also helped that he looks like my grandfather.
He gave her a prescription for a pain patch (Fentanyl), a very low dose to start.
The following weekend she did not fare well. There was no vomiting but lots of pain.
At this point I got her an appointment with Dana Farber. My mother's primary care doctor's office failed to fax relevant medical records so they cancelled her appointment.
Our oncologist saved the day and resurrected the appointment. He seemed to be on a first name basis with this doctor. He sent the clinic notes that I made a copy of for future reference and I gave a copy of the CT and MRI images on a disc for my cousin to take to the DFCI appointment at the Faulkner.
I did not attend the DFCI appointment, it was decided that they would do a nerve block and biopsy at the same time using the dreaded EUS technique. There was no way around the biopsy if we wanted to enroll my mother in any upcoming clinical trials. There are no clinical trials yet for pancreatic cancer at DFCI.