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Saturday, April 7, 2012

Learning to reminisce

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.

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!

Friday, September 30, 2011


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.

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.

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.

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.

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:

And also here is information on the clinical trial(thanks to my dear friend Gillian who works at DFCI):

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.