Thursday, September 23, 2010
Otherwise she's doing fabulous. We had a little party for Sujon and she was up and about in the kitchen. It makes her feel really happy to see people.
Friday, September 3, 2010
Monday, July 12, 2010
I will write more after the appointment this Friday. She is due for her third (I think) CT scan August 9th. I shall definitely update the family and friends after that. Sorry I haven't posted much but yet again, no news is good news.
We did enjoy a family picnic in Newton Center to celebrate my aunt and Daniel's birthday. There was a mariachi band and dancing and singing. We ate Mexican food and Parveen's friend joined us.
It was something different from our usual cook-eat-clean routine at home.
So all in all, mom is consistently going out and enjoying life.
Sunday, June 13, 2010
We celebrated Sabir's 3rd birthday which was great. She helped a lot with the prep so today she (along with the rest of the family) were pretty beat. It was worth it though, thank you to all those who came out.
Found a venue for the wedding so we have to take mom out to see the place. That'll make her very happy.
That's all for now. More details to come regarding the EUS.
Friday, June 4, 2010
Memorial Day Weekend she went out with the family to a few parties. It is so nice to see her wearing pretty saris, going out, seeing people. Everyone's been so happy to see her!
They've set her up with appointment all the way into July which is good.
I think it is a good thing that you guys don't hear from me as often. hahaha.
The month of June brings three birthdays: Sabir's 3rd, Parveen, and Dan all share the same birthday month.
Tomorrow we are attending a wedding. I don't think mom is comfortable going to the wedding but she did attend the traditional tumeric ceremony. The bride was so happy to see my mom, she gave her a big hug. Though mom did not get up and dance she said she enjoyed watching me make a fool of myself.
I will update periodically as needed but just know that she is doing well, inshallah.
Tuesday, May 18, 2010
He said what we already knew/suspected and what Dr. A said.
Radiation will/may do more harm than help. The pancreas is sandwiched behind the stomach and small bowel so that causes more nausea when the beams go through those organs.
Radiation only adds a few months to ones life anyway...so no. He said he's available in the background and meets with Dr. A regularly. He's the "aggressive treatment" guy.
If ever we get to a point where chemo etc. doesn't work, he's there.
Oh well. At least we looked at yet another option.
Saturday, May 15, 2010
We're awaiting an appointment with the radiation oncologist this Tuesday. Parveen is going with mom.
Since the tumor showed no change but no new sites of disease they may try using both methods to combat her disease/manage it.
Dr. A did mention that radiation makes people sick and I wouldn't want that, the family also agrees. She is doing well with chemo, household chores, cooking rice, laundry. We are content with this increase in quality of life. We want to keep it this way.
But Dr. A didn't want us to think he isn't doing everything he can and that he's keeping options from us so that is why the trip to the radiation doc was booked.
If anyone has read any good papers or studies on radiation and its benefits to PC patients, please feel free to e-mail them to me.
Sunday, May 9, 2010
I gave mom some Crabtree and Evelyn hand therapy lotion because her skin can get so dry (in general it's always been dry but the chemo they said would make it worse).
For aunt I got her a beauty gift certificate and Parveen got her a mani pedi. On Saturday I went out with Parveen to get mom's haircut (which was Parveen's present to my mom). It was great.
The hairdresser was very emotional seeing mom and doing her hair again. We've gone to Debbie FOREVER because Uncle's mom Alice used to go get her hair cut by Debbie.
She's not loosing hair rapidly because of the chemo; she's always had fine hair. But it is thinning out a bit but that's OK she has so many pretty scarves she can wear if it comes to that. I'm not sure about this because Gemzar doesn't actively cause hair loss the way other chemotherapy does.
It was very nice to have dinner with everyone and have a day when the mothers didn't have to work hard or feed us. We thought about doing burgers but Jeff said to Parveen "your mom always cooks, we'll make different things" (aunt has a burger recipe that we love and she always makes the burgers and Jeff grills them).
I had a hard time getting them to relax and sit down and do nothing. I have to say I failed but that's OK they just don't know how to sit still and relax for an entire day. It's just not how they're wired.
Anyway I hope everyone had a good mothers day, that is if they celebrate it. I'm definitely very lucky to have my mom and aunt. I may not be a perfect little girl all the time but I do tell them this all the time.
Friday, May 7, 2010
She is, however, doing much better so the chemotherapy is helping. She currently has gained three pounds since her last visit (roughly).
The doctor says that he will take the liberty of making her an appointment to see a radiation oncologist. He cautions, however, that radiation can make her sick and we don't want that. He recommends that we stick with the chemo and do another CT scan in 2 to 3 months.
He did not address any "time frame" as in long term life expectancy, so I don't think that issue is on the table right now.
I asked to see the before and after scans. It's very hard to tell what's going on in them but he guided us through it. In February her pancreatic cancer tumor marker called Carbohydrate Antigen 19-9 (CA 19-9) was 1955 or something like that. The benchmark for a healthy person of CA19-9 is 30. For a cancer patient that's pretty typical to have a CA19-9 level like that. Her last blood test showed that it's gone down to 500. This is a great sign because the CA19-9 level is an indication of tumor growth and proliferation. It means that it's not acting up right now.
I think these are great results. Though the tumor did not shrink, her symptoms are improving. He is very happy with her progress.
We'll just watch that spot on the liver and hope for the best.
More updates to come. Inshallah it'll just be more good news.
Thursday, May 6, 2010
Her weight is staying the same no huge gains there. The nausea's under control. She doesn't shake as much as before because we lowered the dose of her anti-nausea medications.
I'll have more updates after the review on Friday when we go over the CT scans.
Thursday, April 22, 2010
Anyway it's OK at the moment, she has a doc's appt. tomorrow for treatment which is good. I don't like it when it happens but I like that we can get to a doc sooner rather than later.
There isn't cause for alarm just yet, we've decreased her nausea meds a great deal per the doctor's orders but I guess we'll have to increase them again, even though it causes her to have shakes. Oh well, trembling mom is better than a sick mom.
I'll let you all know what the doctor says tomorrow.
Monday, April 19, 2010
So far she's continuing her progress. Her shakes are minimal because the anti-nausea medication's been dialed way back. This past weekend she went to a Pohela Boishak party Sunday (Bengali New Year--Indian Bengalis and Bangladeshi Bengalis all celebrate this holiday).
Last week, however, the scale showed she lost two pounds. She wasn't too happy about it but we'll get back up there.
I will post an update again after the CT evaluation in the first week of May.
Sunday, April 4, 2010
She's eating well, she's helping a little in the kitchen when aunt cooks.
At the end of April they will re-evaluate her tumor, if the Gemzar has shrunk the tumor any, if it's stayed the same. Either outcome would be great. As long as it hasn't progressed the family and I will be very happy.
I will update everyone as developments occur. I just want to take this chance to thank everyone that's been stopping by the house with food and love, and conversation and company.
Even though she's feeling well it's good to see people. Also people are happy to see her well.
I'll post more on Friday after her appointment.
Friday, March 26, 2010
So mom's nausea is OK for now. We changed her meds back to what they were.
Her feet are still a little swollen so they are going to give her some medication for that.
She's gained a pound which is very exciting news. The doctor was very happy.
I look forward to her week off of chemo.
Wednesday, March 24, 2010
Hopefully this is temporary. This means her tremors will return but that is an OK trade off.
We'll see what the doctor says Friday.
Sunday, March 21, 2010
Wednesday, March 17, 2010
This Saturday she went out with my aunt to the mall and other errands. This Saturday is the first day of spring, I hope we can take her out again.
This Friday she has her second infusion of this cycle. After the 26th I think the doctor will evaluate her, maybe give her a CT scan.
We are all very happy to see her doing well, walking around easily.
Also we've decreased her nausea medications so she no longer shakes all the time. She had some problems with that before because she was taking so many medicines.
I am glad she doesn't need to take a lot of medication to stay nausea free.
So overall, a good week. Updates to come after Friday.
Friday, March 12, 2010
I have some positive news for you: she has maintained her weight (96lbs). The doctor is very pleased! He advised that we decrease some of her nausea medication because it causes her right leg to shake. It happened at the appointment and he said it's a common side-effect of anti-emetic medications.
He did a physical exam today and it was good, her stomach feels softer and not distended (it was slightly hard when she felt very sick).
Her labs are great. CBCs and all that.
What I'd like to do this week is increase her portions and get her some more snacky foods (hummus and carrots yummy).
He said there are no restrictions on what she's allowed to eat. She just needs to keep eating milder less spicy foods.
I can't say enough how nice everyone is here.
Wednesday, March 10, 2010
No weight gain so far but her digestive problems have improved. The nausea's under control. The visiting nurse came Monday and was very happy that mom answered the door herself.
Mom was happy to meet Dan's family this weekend. The in-laws-to-be brought us a 2 pound striped bass as is the tradition in Bangali weddings for the tumeric ceremony.
It was a very sweet gesture.
We are heading into her second chemo cycle this Friday. Lets all hope that her blood counts are good.
Thursday, March 4, 2010
It's been a lil while I know. I am glad I have nothing to report! :-) We've been sneaking Ensure into her meals, I made her some pancakes using the stuff instead of milk. It works. I tasted it and she said she liked the pancakes.
Also I made her caramel custard (pudeen) w/ ensure instead of milk as well.
She also liked this. Regular ensure makes her nauseous. The visiting nurse came this week and was happy to see her better.
A few days ago, however, she slipped up on the pain management. She didn't take morphine quickly enough, did not recognize that what she was feeling was pain. She thought she was having chest pains and aunt was home with her. Khalamoni said her face turned red and that she complained of chest pains when in reality it was her stomach.
That was the only ordeal of this week really. She's been a bit tired, it's been rainy outside so she's been sleepy.
She calls me at work, I call her. Parveen calls her. It's a wonder she gets any rest during the day :-).
I wonder what to make her this week. Dan's family is coming over for dinner Sunday. so excited.
My whole family is cooking: cousins Natasha and Sujon will be there, of course Parveen Jeff and Sabir. Aunt is making lamb biryani, Jeff's making palack paneer I think, Parveen's making chicken mosalam, Natasha's making desert, aaaaaaaaand I dont' know what I'm making. oye.
Anyway that is all for now. I am glad to report good news.
Wednesday, February 24, 2010
She said she had some issues with dry mouth yesterday but gargling with salt water will solve that problem. That is the least of our worries.
The Emend (a drug that she takes for three consecutive days after a chemo appointment) helped her. No vomit so far. Nausea is there sometimes but she is dealing with that well.
Our main goal is to get her to gain weight, at 93 pounds it's very concerning. Her doctor is upset as well.
I want to thank all of our friends for coming to the house, bringing lots of yummy food, and great company.
I have one last bit of good news: on Friday the 19th my boyfriend proposed to me and I said yes. I am now engaged. Mother was very happy as well as the whole family.
This week a great service called the Road to Recovery (American Cancer Society) informed me a volunteer will drive her to her appointment and bring her home. I signed her up for it a while back. I didn't think they'd be able to swing it but lets see how this first appointment goes. I hope he doesn't cancel.
I will post again after the third chemo appointment.
Saturday, February 20, 2010
They tweaked her nausea medications and she is taking compazine, zofran, dexomethazone, and other drugs to help her w/ her nerves and bowels and all sorts of stuff.
She ate some toast today, some jello, half an egg. Now she's going to eat some rice and chicken and even soft veggies.
We are taking it slow for now, giving her 6 small meals. Now that she can actually keep stuff down we can think about meal plans, how much, how often, accommodate her changing tastes.
I really want to try and give her an Insure and Ice cream milk shake. Of course we'll have to thin it out because milk and diary products have always been a little harsh on her stomach.
She got up today and did the dishes, cleaned the kitchen table, even peeled some potatoes. Today is a good day so far.
Thursday, February 18, 2010
Tomorrow morning my aunt is going with the help of our friends (thank you Raemon bhai) for mom's second chemo treatment.
She has been throwing up since Saturday the 13th. The chemo is not the cause of it since Gemzar has side effects but not THIS severe. I ran into Dr. A when getting some food today in the cafeteria (I was zoning out and he actually startled me) and he said this nausea is due to the tumor itself. The obstructions in her pancreatic ducts are the major problem. They don't want to delay the treatment. It could really help her. Her blood counts are fine so they feel comfortable proceeding.
Her NP helped tweak her nausea regimen and we put her on some new stuff (4 new things). They're not working tonight...we'll see what happens tomorrow.
It is time for bed, I shall update after her second chemo infusion tomorrow.
Inshallah this nausea will go away. I want her to be able to eat more than a popsicle.
Wednesday, February 17, 2010
Her second appointment is this Friday the 19th early in the morning. A good friend of ours is helping us get there (I truly don't know what we would do without all our friends' support). This week is my turn to go w/ mom to chemo, last week Parveen went.
The nurses and doctors at DF have been great, and very good about returning calls. If she does go into the hospital again, I'll update you all as soon as possible.
Saturday, February 13, 2010
Last night she was fine. She ate, she slept, she was alert, a little tired.
This morning at 8am she was up and walking around, she helped my aunt make broccoli.
She then took a long nap and then the visiting nurse came. During this time we should've fed her, there was a 5 hour gap between breakfast. We thought that it was best to let her rest.
When she took her afternoon dose of morphine and reglan (the anti-nausea med) she drank a whole glass of water. This sudden influx of water on an empty stomach made her vomit. So we will have to make sure she eats more frequently.
Since then she's had some ice cream, crackers and the like. For dinner she didn't eat much. She had some soup that aunt made her but not too much of it. She didn't feel very well and was queasy tonight. We're taking it slow and I just hope whatever she did eat she keeps down.
Tomorrow I will try to make her some Bangali custard (otherwise known as )
Tuesday, February 9, 2010
Today we found that mom weighs 99 pounds. They drew two vials of blood for tests before chemo.
Mt. Auburn said her thyroid was off but Dr.A thinks it's the least of her problems. He wants to tackle the cancer first.
They have increased her pain patch (fentanyl).
She is eating solids but what is happening is the cancer is using up a lot of her nutrients So she needs to eat way more than she is. The problem is of course her appetite.
He prescribed a drug for her appetite. We will try that tonight. Today I want to thank Zaman uncle for driving us to the appointment and back. He was a tremendous help.
So the plan is every friday we go in for an infusion of Gemzar (gemcitibine) and the last week of Feb. going into March she is off the chemo. Then they will do another three weeks on and one week off (that whole thing is a cycle...3 weeks on one week off). After two cycles they may do a CT scan or he said they will assess her condition but how she's eating, her pain, other symptoms.
The doctor reached over and held her hand several times. He was a little surprised to see her in a wheelchair but Zaman uncle thought it would be best that she don't walk around all over the hospital. He was right.
He's a great doctor. I really like him.
One of the weeks we will be seeing the NP instead of the MD but that will obviously be OK. One of the Fridays we have a date with a nutritionist. I definitely want to be there for that one.
Ok, I will write more when I have something more. Inshallah it'll just be good news :-)
The family feels all sorts of things about chemotherapy Friday. I just hope it helps.
Saturday, February 6, 2010
Mom is back to eating solids, chicken, very squishy rice, soup. I've found she really likes to nibble on ice cubes. Instead of just plain ice cubes Apu and I thought she could have popsicles made of Gatorade so that she can get electrolytes. Today I made some out of pomegranate juice.
Like I've said before vegetables are hard for anyone to digest (i.e. we don't produce an enzyme naturally to break down cellulose) so it's even harder for her because she's not even making regular pancreatic enzymes.
This week we have an appointment at Dana Farber on Tuesday the 9th. It will not be the chemotherapy infusion, it will be a physical with her oncologist, some blood work to look at her chemistry and do a complete blood count. This will show a before and after picture of how her body is reacting to the chemo drugs. There have been advances in chemotherapy so they are not as harsh as before. The nurse that visited mom today did say she worked in a cancer ward for a long time and administered chemo. She said the first thing to beware of is the extreme fatigue. Anemia is a side effect of chemo so that leads to the fatigue (partially). She said not everyone looses their hair.
The loss of hair, though traumatic for some, I can live with (she owns several colorful headscarves/. I don't know how she feels about that possibility; I am sure she will make some amazing joke about it. She is quite a witty woman underneath her reserved exterior :-) But I worry most about the nausea returning. It was very difficult to watch her vomit for two weeks straight. I do not want that to return (I know I speak for the family as well, that they feel the same way I do). She is already compromised, and her strength is clearly not what it used to be.
Anyway, we'll just burn that bridge when we get there. I need to not over-think things.
I hope she is better tomorrow. Yesterday she was fine but of course I was at work and didn't see her well. Today I was home with her and she felt uneasy and a little queasy all day.
Tomorrow we are expecting one family to visit. It will brighten her spirits and will distract from any mild pain/unease.
The family truly appreciates your prayers and thoughts.
Wednesday, February 3, 2010
her right foot kept twitching and she couldn't stand up...well like it was shaky. her blood pressure was high and she felt heaviness in her chest everytime she breathed in.
I called Dana Farber to maybe have the doctor paged or talk to a nurse practioner. They connected me, the NP called the house and aunt was home by that time. The NP suspected the same thing I did that these were stroke symptoms. Aunt drover her to the ER at Mount Auburn, the closest one to our house. I met them there.
Her EKG was fine. They did a head CT scan which showed no sign of stroke.
Later on that night they did an MRI.
Today mom called to tell me they did an Ultrasound on her leg to rule out deep vein thrombosis (aka blood clot) and she's awaiting an EKG on her heart.
Pancreatic cancer patients have blood clot issues associated with their condition so that was a fear of mine.
Right now we are waiting on MRI results and more information.
No stroke, her EKG and ECG and LMNOP's are all fine (just kidding about the LMNOP guys hahaha). They are keeping her tonight. Don't really know why. Probably just to cover all their bases. Next week on the 9th is her first chemotherapy infusion.
She was fine when we left her tonight. She ate dinner, mashed potatoes, half a dinner roll and veggie soup (the broth mostly). Solids, YAY!
We had to tell them to MAKE SURE to give her her Reglan and Creon meds before meals (reglan every 6 hours of course). They misunderstood even though I gave them a chart of her meds and when she's to take them. A table I tell you! That we fill in at home! Apu and I worked on it and I don't why they didn't..."realize" that she needed this every 6 hours etc.
So anyway, glad that was taken care of. It's sometimes surprising how much people have to speak up to get things done. Her initial oncologist practices at Mt. Auburn too..doesn't anyone read clinic notes? :-p
Tuesday, February 2, 2010
We did, and she seems to be fine now; blood pressure, blood work, and CAT scan all came out as normal. Still, they're going to keep her for overnight observation.
I think everything is OK for now.
Monday, February 1, 2010
The doctors were very unclear about her dietary restrictions so that is the reason why she threw up after coming home from the hospital, her digestive system was not ready for solid foods.
Right now we're transitioning her into solids but we don't want to rush things. Also we want to build up her strength for the chemo which is why we're holding off on that right now. We should have her first infusion next week. The doctor's office will call me with the date and time.
Wednesday, January 27, 2010
She cannot drink soda either. Basically a liquid diet.
I will update this blog in the evening, hopefully I'll have no vomiting to report.
She ate and tried very hard all day but she just couldn't keep anything down last night.
I hope that today is better.
Monday, January 25, 2010
Apu and I have had to devise a charting system for when she takes her meds.
Upon discharge we talked about a home nurse aid that would come periodically to check on mom. The family meeting was good, constructive.
The doctor feels that the experimental therapy described by Dr. Stephen Cantrell is not optimal for my mother because the interferon is a very harsh, toxic drug. She just overcame this hump in the road, and that's the last thing we need right now. (http://spotlight.vitals.com/2009/10/dr-stephen-cantrells-melanoma-self-cure-helps-his-patients/)
He wanted to start on chemo as soon as this week but I think we should wait so that she can regain her strength then start the chemo 1 a week for 3 weeks then off one week.
After a cycle or two of the treatment he wants to get another CT scan to see how the cancer is responding. The goal is to contain the cancer in the pancreas, and to improve the quality of life, decrease the pain and symptoms due to the cancer.
This is excellent news for now. It hasn't spread to any of the other organs, it is not metastatic.
Sunday, January 24, 2010
I will write more, aunt and I are going to the hospital now and will be back around 7 tonight I think.
Back from the hospital, it's around 8:30 here. She was doing well all day, a little restless to come home. I think she tired herself out. She had a little pain so they gave her medicine for that and she took her nausea medication, had very little soup. Still it's better than the alternative.
She is eager to come home because in the hospital she gets no rest. They wake her up every 4 hours for vitals and such, so it's a little disorienting.
Will update you all on what the family meeting consists of tomorrow.
Saturday, January 23, 2010
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.
Wednesday, January 20, 2010
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.
Sunday, January 17, 2010
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.
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.