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!
Wednesday, October 5, 2011
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.
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