Feeling better

Her vomiting has been very bad these few days even with trying various medicines. Today was the first day she did not vomit. She ate a muffin, and a quarter cup of soup for lunch. I am just very happy that she did not vomit as of 5:30PM today. The two medicines that worked were compozine and reglan. She is still on morphine and the fentanyl patch but she is taking the drugs orally rather than intra-venously.

I want to bring my computer to the hospital so that we can video chat with Bangladesh. We will have to set that up somehow.

They unhooked her IV and she walked around the ward with my aunt.

Monday we are having a meeting with the pain management team and the DFCI oncologist at 4:00. I do not know the nature of the meeting but will post an update.

Hospital Stay Update

Back from Brigham and Women. It is late so I will make this brief.

Parveen was there in the morning but then she reluctantly returned to work.
The doctor at DFCI admitted her today and the wonderful nursing staff arranged for a bed at Brigham. We were going to have to wait a long time at DFCI (until 7 the doctor thought) but then a bed opened up at 3. I rode in the ambulance with her which was a bumpy ride. It upset her a tiny bit and increased her stomach pain.

At Brigham I met a nurse that I knew from Simmons. I saw her several times in the science building, I introduced myself and she turned out to be my mother's night nurse.

At this point she hadn't eaten anything, had vomited this morning, and last night. She tried very hard at DFCI and ate two crackers. This came up soon after she got settled into her bed at Brigham.

The doctors were very caring, good listeners, clear, and helpful. The woman in the curtained bed next to my mother, a little older than my mother wearing a fuzzy black faux fur hat liked her stay so much she took me aside and said:
"I was sick like your mother too, I was throwing up all over the place. I got very good care here. She is in good hands. I will pray for her at church."

A complete stranger was being so nice to me and so forthcoming about the institution's care. I really appreciated this kindness.

The evening progressed, my friend drove over with my aunt and I felt better having them there. The nurses again were so very attentive, they wanted to prepare my mother for a CT scan tonight if at all possible.

One doctor truly impressed me. He is an MD, PhD. I looked at his title and was just like...oh God I hope he's nice...I know it is a poor bias to have. Shame on me!

In any event, he came by and took my mother's ENTIRE history. Like when she immigrated here, what part of Bangladesh she's from, where she works, the whole rundown. I knew he was just doing a mental faculties check on her but he did it so well. He made her recount things he already knew from her chart. His last name was little odd...for a quasi plain looking white guy.

It turns out that his wife is Gujrati and he spent two months in India, knows Gujrati and some Hindi. His sons speak it, one of them is named Anand, he lives with his whole big family (in-laws and all). He talked to my mom in Hindi for a bit. When he left mom said by in Hindi. He replied:
"Salam aleikum" (Goodbye/hello in Bangla/Arabic).

Here's the kicker: He took his wife's last name! The feminist in me is tingling with joy.

The nurse from Simmons gave me the number to their desk in case I can't sleep, I'm worried, I want to know her status.

Anyway, even though I don't know how she's doing right now at 11PM tonight, if she threw up again, I know at least she is in great hands. In fact I think I'll give her a call. Just so that I can sleep better.

Update - Mom at Brigham and Women's

She's lost a lot of weight recently and her nausea's been pretty bad, so the doctor recommended that we bring her in to the hospital in order to control her symptoms and run more tests. She hasn't really been able to eat for the last week, so we're trying to settle her stomach and make her able to digest food properly. Therefore, she's going to be hospitalized for a few days.

More later...

A bit of good news

The new medication that my mother was put on is working. She is able to eat.

However, she is still in some pain but that we can control somehow. At least she can eat. We are all very happy.

There were a lot of people at our house yesterday, it was nice for her to be around people. We really appreciate all the support.

Do you know who you're dealing with?

This is the tale of three women who never let anyone push them around. Yesterday Parveen, my aunt and myself went to Brigham and Women for my mother's Endoscopic Ultrasound, celiac axis block, and biopsy.

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. :-)

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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.

Abdominal Pain

Welcome to my blog, friends and family. The picture in the banner is one that I took this past Eid. On the left in the blue sari is my aunt and in the green is my mother
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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.

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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.