This time last year she was already gone. She was still breathing, her heart was still beating (quite frantically actually, I could see the artery in her neck pulsing in an usual way) but she was definitely not with us. I am beginning to focus less and less on the manner of her passing, even though it still sometimes gives me nightmares.
Starting on Tuesday I can no longer say: this time last year she we went out together; we went to such and such an appointment; she bought me something; she made me my coffee. I’ll have lived without her for a whole year and have to realize that it’s going to be like this from now on. Before I realize it, I will endure her ten year death anniversary as I did with my uncle Owen’s this past December.
One could say that the first year is the hardest and in some respects they are right. But that doesn’t mean the years following get “easier”. You still can’t talk to them face to face, you still can’t ask them for advice, they’re not going to waltz into my kitchen to help me rescue a failed roast or a daal puri. And it will always suck the same amount.
I am surprised, though, at how quickly this date came to pass. It really does not feel like a year has passed, and I really had no idea how I would do this. We cleaned out the basement recently and I found an envelope addressed to my college mailbox from her. The two of us wrote each other actual letters even though we were a 15 minute drive apart. It reminded me that I constantly told her that could not live without her, how would I survive college if she wasn’t there to bring me comforting food that was a thousand times better than the dining hall etc. etc.
I guess I’m a little resigned to it all today. I view it as a, it is what it is. I’ll miss her like crazy, randomly when I’m sitting at my desk a thought will occur and I’ll feel like I can’t breathe because I start crying uncontrollably. This is my life now. It used to be that I’d spend hours at DFCI holding her hand during infusions, putting pills in boxes, charting symptoms in a binder. Now this is what I do. I think about her, I remember her fondly and I acknowledge that it just sucks.
Comfort is just not something that will happen for me in this situation. I accept the fact now that yes, she isn’t in agony, but she isn’t in a “better place”. A better place would be if she was still around, happy, healthy, earning her own living, if she had been able to attend my wedding, if I could’ve invited her over for dinner/tea/whatever reason; if she could in the future coach me through childbirth and watch me earn a graduate degree.
So I’ve lived without her for a year, I thought this would be quite impossible and now I must do it year after year. The only thing that’s improved is that I can talk about her with some degree of being able to maintain my composure.
Her sister, her niece, even the lil kid, her other niece who lives half a world away in Australia, I’m sure her brother and his son miss her, my husband wishes he could still have her over since the last time she saw this apartment the paint fumes made her vomit. We all just simply miss her.
Saturday, April 7, 2012
Wednesday, October 5, 2011
2011 Lustgarten Foundation Fundraiser
Thank you everyone for supporting the Lustgarten foundation. To both team members and donors, I really really appreciate it. Our team raised $1,895.00. The 2011 New England Pancreatic Cancer Research Walk raised more than $290,000 and attracted over 2,000 participants!
Big picture: Through 2010, the Pancreatic Cancer Research Walk series has raised more than $12.7 million! Your participation will help us reach our goal of better treatment, early detection and ultimately a cure for pancreatic cancer.
Hope to do it again next year!
Big picture: Through 2010, the Pancreatic Cancer Research Walk series has raised more than $12.7 million! Your participation will help us reach our goal of better treatment, early detection and ultimately a cure for pancreatic cancer.
Hope to do it again next year!
Friday, September 30, 2011
Purpose
A year ago I received a text from a former co-worker from Tufts saying: "Hey Ann and I saw this sign at Bruegger's about a Pancreatic cancer fundraising walk. It's in a week, so I know it's short notice but I thought you'd want to know/get involved". If it wasn't for Cindy I wouldn't be walking on Sunday.
Around this time last year mom still went to chemotherapy appointments. I still have her blue notebook with me--for some reason--where I frantically wrote down every detail of her appointments, medications, and next steps. It sits on my desk today.
There are no entries for September 2010 so I assume it was a quiet month. But even so, I wasn't plugged into fundraising activities; my family and I were focused on appointments, transportation to appointments, and filling her medications. So I mean it when I say without that text I wouldn't have done this walk a year ago.
But last year things were concrete, I was scared--we were all scared--but things were concrete. A year later I feel strange. I no longer walk for my mother who sits waiting for me at home but I walk in her memory. And that to me is just strange.
I cannot go home this year to tell her what Jeff, Parveen, Dan, our team members and I did that day, but I know she must be aware. It is a very small comfort to know that our loved ones never truly leave us. But it's still a comfort.
I know Sunday is about raising funds for Pancreatic Cancer research. But this post is about honoring her memory and she was so much more than her disease. I do this because without her I would simply have no command of my kitchen. I could not come home from work, look at my refrigerator and whip up a meal for two or twenty.
I could not look at a recipe and decide that it lacks cumin, or it needs more garam masala or even simply some oregano. She is the reason why I can hear a song for the first time (any song be it Jazz, Classical, or Rock)and just sing along. Lastly, I wouldn't be able to blog away about my "feelings" if she hadn't been interested in the literary arts.
She showed me what it is to have to pick yourself up and just do it regardless of circumstances. She did not raise me alone, but she had to get up in the morning and go to work as a single mom and deal with a child who never stopped terrorizing her.
And of course let's not forget I still have part of her DNA :-)
Her disease drove me to learn more about this particular aspect of medicine and research so I walk for her on Sunday with my team. But I honor her daily.
Around this time last year mom still went to chemotherapy appointments. I still have her blue notebook with me--for some reason--where I frantically wrote down every detail of her appointments, medications, and next steps. It sits on my desk today.
There are no entries for September 2010 so I assume it was a quiet month. But even so, I wasn't plugged into fundraising activities; my family and I were focused on appointments, transportation to appointments, and filling her medications. So I mean it when I say without that text I wouldn't have done this walk a year ago.
But last year things were concrete, I was scared--we were all scared--but things were concrete. A year later I feel strange. I no longer walk for my mother who sits waiting for me at home but I walk in her memory. And that to me is just strange.
I cannot go home this year to tell her what Jeff, Parveen, Dan, our team members and I did that day, but I know she must be aware. It is a very small comfort to know that our loved ones never truly leave us. But it's still a comfort.
I know Sunday is about raising funds for Pancreatic Cancer research. But this post is about honoring her memory and she was so much more than her disease. I do this because without her I would simply have no command of my kitchen. I could not come home from work, look at my refrigerator and whip up a meal for two or twenty.
I could not look at a recipe and decide that it lacks cumin, or it needs more garam masala or even simply some oregano. She is the reason why I can hear a song for the first time (any song be it Jazz, Classical, or Rock)and just sing along. Lastly, I wouldn't be able to blog away about my "feelings" if she hadn't been interested in the literary arts.
She showed me what it is to have to pick yourself up and just do it regardless of circumstances. She did not raise me alone, but she had to get up in the morning and go to work as a single mom and deal with a child who never stopped terrorizing her.
And of course let's not forget I still have part of her DNA :-)
Her disease drove me to learn more about this particular aspect of medicine and research so I walk for her on Sunday with my team. But I honor her daily.
Wednesday, April 6, 2011
A good book
Last time mom and I were at Dana Farber I brought a book with me. Her nurse practitioner spoke very highly of it. It is a Christmas present that I specifically asked for and I guess it was a good choice. My friend D, an heme/onc nurse also loves this book.
It's a bestseller as well so I'm really not alone in thinking that this book is fabulous.
I have no updates on mom at the moment. We have visitors constantly which keeps everyone's spirits up. Daniel is now working from home as in working from Belmont so that he can be near. Everyone is close and it really helps. Our family in Bangladesh are trying very hard to get visas to come here. That would be great if it all worked out.
I just wanted to quote a section of this book because we can relate to it, and I felt so strongly about it that I dog-eared the page (I don't often do that to my books because I hate it when the pages look abused in any way).
"Sorenson had pancreatic cancer. The tumor had been discovered almost accidentally in the late summer of 2003, when she had had a bout of abdominal pain and diarrhea and a CT scan had picked up a four-centimeter solid nodule hanging off the tail of her pancreas...A brave surgeon had attempted to resect it but the margins of the resection still contained some tumor cells. Even in oncology, a dismal discipline to being with, this--unresected pancreatic cancer--was considered the epitome of the dismal.
Sorenson's life had turned upside down. "I want to beat it to the end," she had told me at first. We had tried. Through the early fall, we blasted her pancreas with radiation to kill the tumor cells, then followed with chemotherapy, using the drug 5-fluorouracil. The tumor had grown right through all the treatments. In the winter, we had switched to a new drug called gemcitabine, or Gemzar. The tumor cells had shrugged the new drug off--instead mockingly sending a shower of painful matastases into her liver. At times, it felt as if we would have been better off with no drugs at all.
Sorenson was at the clinic that morning to see if we could offer anything else. She wore white pants and a white shirt. Her paper-thin skin was marked with dry lines. She may have been crying, but her face was a cipher that I could not read.
"She will try anything, anything," her husband pleaded. "She is stronger than she looks."
But strong or not, there was nothing left to try. I stared down at my feet, unable to confront the obvious questions. The attending physician shifted uncomfortably in his chair.
Beatrice finally broke the awkward silence. "I'm sorry." She shrugged her shoulders and looked vacantly past us. "I know we have reached an end."
We hung our heads, ashamed. It was, I suspected, not the first time that a patient had consoled a doctor about the ineffectuality of his discipline."
---The Emperor of All Maladies, a biography of cancer, by Siddhartha Mukherjee.
It's a bestseller as well so I'm really not alone in thinking that this book is fabulous.
I have no updates on mom at the moment. We have visitors constantly which keeps everyone's spirits up. Daniel is now working from home as in working from Belmont so that he can be near. Everyone is close and it really helps. Our family in Bangladesh are trying very hard to get visas to come here. That would be great if it all worked out.
I just wanted to quote a section of this book because we can relate to it, and I felt so strongly about it that I dog-eared the page (I don't often do that to my books because I hate it when the pages look abused in any way).
"Sorenson had pancreatic cancer. The tumor had been discovered almost accidentally in the late summer of 2003, when she had had a bout of abdominal pain and diarrhea and a CT scan had picked up a four-centimeter solid nodule hanging off the tail of her pancreas...A brave surgeon had attempted to resect it but the margins of the resection still contained some tumor cells. Even in oncology, a dismal discipline to being with, this--unresected pancreatic cancer--was considered the epitome of the dismal.
Sorenson's life had turned upside down. "I want to beat it to the end," she had told me at first. We had tried. Through the early fall, we blasted her pancreas with radiation to kill the tumor cells, then followed with chemotherapy, using the drug 5-fluorouracil. The tumor had grown right through all the treatments. In the winter, we had switched to a new drug called gemcitabine, or Gemzar. The tumor cells had shrugged the new drug off--instead mockingly sending a shower of painful matastases into her liver. At times, it felt as if we would have been better off with no drugs at all.
Sorenson was at the clinic that morning to see if we could offer anything else. She wore white pants and a white shirt. Her paper-thin skin was marked with dry lines. She may have been crying, but her face was a cipher that I could not read.
"She will try anything, anything," her husband pleaded. "She is stronger than she looks."
But strong or not, there was nothing left to try. I stared down at my feet, unable to confront the obvious questions. The attending physician shifted uncomfortably in his chair.
Beatrice finally broke the awkward silence. "I'm sorry." She shrugged her shoulders and looked vacantly past us. "I know we have reached an end."
We hung our heads, ashamed. It was, I suspected, not the first time that a patient had consoled a doctor about the ineffectuality of his discipline."
---The Emperor of All Maladies, a biography of cancer, by Siddhartha Mukherjee.
Saturday, March 19, 2011
VNA Hospice First visit
Today a visiting hospice nurse came for the first time. Friday was also a big day.
This was all decided when mom went to see her Nurse Practitioner and her Palliative care oncologist. Her primary oncologist, Dr. A was away this week. Otherwise he'd be very involved in her care and decision making.
The NP saw her and talked about her DNR, we reviewed the paper work that we signed a year ago. She made sure mom was aware of the changes occurring.
They gave her IV pain meds and nausea medications. Then the Palliative care team came to see her, there were three people there. One was an oncology pharmacist. They worked together to come up with a new plan.
Right away they called a company and ordered a pump to be delivered the same day. Saturday the hospice nurse would set it up.
Her oral medications were not working so this is a subcutaneous tube that delivers constant medication at a steady rate and then she can press a button to receive an additional bollus every 15 minutes.
They sent her over to BWH after that to have a paracentesis. It is like an amniocentesis but not nearly as much fun. They used an ultrasound and guided a needle to the pockets of fluid that have been collecting in her stomach. They drew out 1800 milliliters of fluid (close to 2 liters).
When we came home, however, the fluid continued to drain from the small needle puncture site. We've been making sure her bandages are dry to avoid infection.
The hospice nurse reviewed her whole medical history, social, family, and set up the pump. The visit was very long, close to 3 hours. She was very helpful.
She said that the fluid from her belly even after the paracentesis is normal for a cancer patient.
Unfortunately after she left mom did not have a very good night. Her pain control has been extremely poor. It is nice that we can call hospice 24/7 and they are there and will even come out to the house. They taught me how to increase the rate of medication and she's had a little relief. But she's still not doing well.
I want to thank all of the friends of the family who visit bringing with them food, support, and cheer. You all take time out of your busy days to see us and we could not get through this without you.
Of course we wish Bangladesh was closer but we feel the love all the way from there as well.
I will write more when I can.
This was all decided when mom went to see her Nurse Practitioner and her Palliative care oncologist. Her primary oncologist, Dr. A was away this week. Otherwise he'd be very involved in her care and decision making.
The NP saw her and talked about her DNR, we reviewed the paper work that we signed a year ago. She made sure mom was aware of the changes occurring.
They gave her IV pain meds and nausea medications. Then the Palliative care team came to see her, there were three people there. One was an oncology pharmacist. They worked together to come up with a new plan.
Right away they called a company and ordered a pump to be delivered the same day. Saturday the hospice nurse would set it up.
Her oral medications were not working so this is a subcutaneous tube that delivers constant medication at a steady rate and then she can press a button to receive an additional bollus every 15 minutes.
They sent her over to BWH after that to have a paracentesis. It is like an amniocentesis but not nearly as much fun. They used an ultrasound and guided a needle to the pockets of fluid that have been collecting in her stomach. They drew out 1800 milliliters of fluid (close to 2 liters).
When we came home, however, the fluid continued to drain from the small needle puncture site. We've been making sure her bandages are dry to avoid infection.
The hospice nurse reviewed her whole medical history, social, family, and set up the pump. The visit was very long, close to 3 hours. She was very helpful.
She said that the fluid from her belly even after the paracentesis is normal for a cancer patient.
Unfortunately after she left mom did not have a very good night. Her pain control has been extremely poor. It is nice that we can call hospice 24/7 and they are there and will even come out to the house. They taught me how to increase the rate of medication and she's had a little relief. But she's still not doing well.
I want to thank all of the friends of the family who visit bringing with them food, support, and cheer. You all take time out of your busy days to see us and we could not get through this without you.
Of course we wish Bangladesh was closer but we feel the love all the way from there as well.
I will write more when I can.
Monday, March 14, 2011
Problems with Clinical Trial
Mom went to the doctor Friday with Parveen. She was supposed to start on the clinical trial but the doctor thought her pain control is poor.
They gave her pain meds intravenously and fluids. Friday night she had a very terrible night. A new symptom is that she's having trouble breathing due to the fluid in her belly that's pressing on her diaphragm.
She has an appointment in April. I will post another update as soon as I know something.
They gave her pain meds intravenously and fluids. Friday night she had a very terrible night. A new symptom is that she's having trouble breathing due to the fluid in her belly that's pressing on her diaphragm.
She has an appointment in April. I will post another update as soon as I know something.
Friday, February 25, 2011
CT Scan results, biopsy, new developments
Hello everyone.
They attempted another celiac axis nerve block on Valentine's day and unfortunately it did not work. For this reason her pain medications had to be changed today.
They were able to get a positive tissue biopsy from her liver and this means she qualifies for a clinical trial.
The CT scans show that the cancer is active, it has spread and that the Xeloda is no longer working. They will try this clinical trial in two weeks. They need time to wash the Xeloda out of her system.
The trial uses a drug that treats malaria but interacts with a pathway that helps pancreatic cancer cells survive. By blocking it (this process is called autophagy)they hope to kill the pancreatic cancer cells. Here is a free article on pubmed for people who are interested: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2914492/?tool=pmcentrez
And also here is information on the clinical trial(thanks to my dear friend Gillian who works at DFCI): http://www.cancer.gov/clinicaltrials/search/view?cdrid=693433&version=HealthProfessional&protocolsearchid=8853963
The gist of the trial is this: "Hydroxychloroquine is approved for the treatment of non-cancerous illnesses such as rheumatoid arthritis and systemic lupus erythematous. Researchers in the laboratory have tested tumors from patients with pancreatic cancer and have discovered that they have certain pathways inside the cells that promote growth and survival of the tumor. Hydroxychloroquine may inactivate these pathways and results in the death of pancreatic cancer cells."
It's just a pill, taken daily. We'd go back every 2 weeks to see the doctor.
I will keep you all updated on how she's doing with the clinical trial. We all hope for the best. Inshallah.
They attempted another celiac axis nerve block on Valentine's day and unfortunately it did not work. For this reason her pain medications had to be changed today.
They were able to get a positive tissue biopsy from her liver and this means she qualifies for a clinical trial.
The CT scans show that the cancer is active, it has spread and that the Xeloda is no longer working. They will try this clinical trial in two weeks. They need time to wash the Xeloda out of her system.
The trial uses a drug that treats malaria but interacts with a pathway that helps pancreatic cancer cells survive. By blocking it (this process is called autophagy)they hope to kill the pancreatic cancer cells. Here is a free article on pubmed for people who are interested: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2914492/?tool=pmcentrez
And also here is information on the clinical trial(thanks to my dear friend Gillian who works at DFCI): http://www.cancer.gov/clinicaltrials/search/view?cdrid=693433&version=HealthProfessional&protocolsearchid=8853963
The gist of the trial is this: "Hydroxychloroquine is approved for the treatment of non-cancerous illnesses such as rheumatoid arthritis and systemic lupus erythematous. Researchers in the laboratory have tested tumors from patients with pancreatic cancer and have discovered that they have certain pathways inside the cells that promote growth and survival of the tumor. Hydroxychloroquine may inactivate these pathways and results in the death of pancreatic cancer cells."
It's just a pill, taken daily. We'd go back every 2 weeks to see the doctor.
I will keep you all updated on how she's doing with the clinical trial. We all hope for the best. Inshallah.
Wednesday, January 5, 2011
New Year, New Treatment
Hello everyone. I hope you all had a safe and Happy New Year!
A lot has happened since I posted. First I'd like to start off with October.
My cousin Parveen and I organized a walk to raise money for Pancreatic Cancer Research. It was through the Lustgarten foundation. I mainly used Facebook to raise money.
There was a lot of generosity out there from friends and family. Our team was able to raise $1,745 in one week. Altogether, participants raised $244,345. One hundred percent of this money went directly towards research thanks to corporate sponsors who underwrite all of the administrative costs. Hopefully, these funds will go towards research that will help people with pancreatic cancer live longer. Ultimately, researchers will be able to find a cure.
Lots of people donate and wanted to be there in person to walk with me. Those who came out on the cold October day were Dan, Ahad, Saba, Trisha, Gina and Mukta. Of course Parveen and Jeff were there. The support was overwhelming!
Here's a picture of the team before we started the walk:
My mother was diagnosed a year ago in December. Her doctors and nurses at Dana Farber have been amazing. A year ago I was extremely scared and did not know what to expect.
She underwent nearly 11 cycles of IV gemcitabine treatment. Unfortunately the drug's effectiveness came into question in early December 2010 due to her increased pain, weight loss and other symptoms.
A CT scan showed that the cancer has spread to her liver. There is a small metastasis but it's still not great news.
Now the doctor is trying oral chemotherapy. The drug is called Xeloda (7 days off, 7 days on). The side effects are a little harsher than Gemcitabine, the greatest concern being toxicity.
So far she's had 2 rounds on the drug and she's been doing well. She's gained 2 of the 10 pounds that she lost in December. The pain is still a problem, mainly her back. She has nausea once a week, she'll vomit about once or twice a week.
Otherwise everything is the same. I will keep you all updated, I am sorry I haven't updated in a while.
Wishing for the best in 2011.
A lot has happened since I posted. First I'd like to start off with October.
My cousin Parveen and I organized a walk to raise money for Pancreatic Cancer Research. It was through the Lustgarten foundation. I mainly used Facebook to raise money.
There was a lot of generosity out there from friends and family. Our team was able to raise $1,745 in one week. Altogether, participants raised $244,345. One hundred percent of this money went directly towards research thanks to corporate sponsors who underwrite all of the administrative costs. Hopefully, these funds will go towards research that will help people with pancreatic cancer live longer. Ultimately, researchers will be able to find a cure.
Lots of people donate and wanted to be there in person to walk with me. Those who came out on the cold October day were Dan, Ahad, Saba, Trisha, Gina and Mukta. Of course Parveen and Jeff were there. The support was overwhelming!
Here's a picture of the team before we started the walk:
My mother was diagnosed a year ago in December. Her doctors and nurses at Dana Farber have been amazing. A year ago I was extremely scared and did not know what to expect.
She underwent nearly 11 cycles of IV gemcitabine treatment. Unfortunately the drug's effectiveness came into question in early December 2010 due to her increased pain, weight loss and other symptoms.
A CT scan showed that the cancer has spread to her liver. There is a small metastasis but it's still not great news.
Now the doctor is trying oral chemotherapy. The drug is called Xeloda (7 days off, 7 days on). The side effects are a little harsher than Gemcitabine, the greatest concern being toxicity.
So far she's had 2 rounds on the drug and she's been doing well. She's gained 2 of the 10 pounds that she lost in December. The pain is still a problem, mainly her back. She has nausea once a week, she'll vomit about once or twice a week.
Otherwise everything is the same. I will keep you all updated, I am sorry I haven't updated in a while.
Wishing for the best in 2011.
Thursday, September 23, 2010
Cycle 9, Round 1 Tomorrow
Hi all, this week she's been so so. Felt nauseous last week, she's had increased breakthrough pain. She and my aunt will discuss it with the doctor tomorrow and I'll post an update.
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.
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
Cycle 8, round 2
Hi everyone, just to give you all an update that mom is doing great.
No changes in her disease as shown in the CT scans.
We are all very happy to hear this news.
No changes in her disease as shown in the CT scans.
We are all very happy to hear this news.
Monday, July 12, 2010
Cycle 6 Round 2 Coming Up
EUS was not necessary, thank God. Doctor is happy with the progress.
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.
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
Round 2 Cycle 5
Routine visit. Mom's pain is returning a little bit, she's needed to take morphine more for her breakthrough pain. Dr. A thinks she's due for another EUS procedure to do a Celiac Nerve Block.
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.
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
Round 1 Cycle 5
Yesterday mom began her fifth cycle of chemo. The appointment went well, her nurse practitioner Nina was very happy to see my mom wearing her hair down.
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.
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
Meeting with Radiation oncologist
Today we met with the radiation guy. He was an hour late. Parveen, my aunt and myself were there--full house.
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.
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
Round 2 Cycle 4
Hello everyone, short update. Mom is doing well, no swelling of her feet after chemo this Friday.
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.
Goodnight.
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.
Goodnight.
Sunday, May 9, 2010
Mother's Day
Today we celebrated a very nice mother's day weekend. I spent one day with Dan's family for Karen Saturday night and today Dan came over and spent time with my family. There was BBQ with shrimp, spicy chicken sausage, lamb chops, pasta salad (made out of orzo, feta, and cherry tomatoes), and Parveen baked a banana cream pie.
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.
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
CT Scan Results-- Round 1 Cycle 4
The scans show that the tumor did not shrink. There is a 3mm spot on her liver that they are watching. It could be anything, it's not giving her trouble (if it was cancer she would have jaundice and other hepatic problems).
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.
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
CT SCAN
Hello everyone, I've been a little preoccupied with planning/thinking about the wedding and haven't posted in a while. Mom has been doing GREAT.
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.
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
some nausea and illness
Hello quick update. Mom wasn't feeling well today while I was at work around 3pm...then she ate a very small dinner and subsequently threw it up.
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.
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
Round 3 Cycle 3
This Friday mom will have her 3rd round of Chemo for her third cycle. After this Cycle in early May a CT scan will reveal her progress. The family and I are very anxious to see the results.
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.
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.
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