Deep thanks for the condolences, tributes, flowers and glowing memories.
The memorial date will be:
Sunday 1/16/11 2-4 pm
St. John's Church
2727 College Ave. (at Garber)
Berkeley, CA 94705
Contributions may be made to:
LMSdr
In Memory of Rebecca Cohen
http://www.lmsdr.org/donatenow.php
Love,
Steve
Friday, November 19, 2010
Thursday, November 18, 2010
Resting in Peace
Rebecca Roberts Cohen
5/11/58-11/18/10
I have the most unenviable task of reporting that Rebecca passed on tonight at 7:15. I am relieved to say that it was the most peaceful passing any one could imagine. It's been quite a journey. Now we're on to the next one together.
Love,
Steve
5/11/58-11/18/10
I have the most unenviable task of reporting that Rebecca passed on tonight at 7:15. I am relieved to say that it was the most peaceful passing any one could imagine. It's been quite a journey. Now we're on to the next one together.
Love,
Steve
Wednesday, November 17, 2010
The Boxer
Despite the overwhelming odds against her, it's truly amazing to see how much fight is left in this girl.
Rebecca still barrels her way to the bathroom 25 feet away, refusing to use the commode recommend by nurses. She is followed by one of us with arms outstretched in case she teeters during the wobbly sprint. When she gets there, Becca sits on the pot for 20 minutes or so. Can't tell whether she is sleeping or meditating. Just know she's not doing much of what most of us do when we get to the pot.
On Monday night, Abby asked me "Why won't mommy stop fighting this?" That says it all in the form of a question.
On Tuesday, her brother Norman told the social worker who was wondering about Becca's next journey:
"What Becca cared about is the fight and what happens to Abby." That says it all in the form of a statement.
It's Wednesday, and when the bedding and pads are changed, she doesn't just roll over and play dead. That would be too easy. She makes like a stick yogi, arches her back in the bridge position, while others shuffle sheets, pads and bolsters under her. Only then does she lower her distended belly back to the expensive Tempur-Pedic, now branded with her stains. No hospital bed for this one. No rubber sheets. No surrender! OK, surrender the excruciating pain to the liquid methadone stupor. Mouth wide open.
She asks what the date is because she remembers that the first Hospice nurse assessed her mental acuity with that question and other ones, like "what is your name?" It's akin to a referee questioning a just-decked boxer in order to decide whether to stop or continue the fight. Some how, some way she stays on her feet till the bell rings.
Rebecca asks what time it is because she wants to make sure she gets her medication on schedule. And she does this despite sleeping a good 20 hours a day and saying about the same number of words.
They include a sense of humor even though there's nothing to laugh about. She tells Norman: "What are you guys doing today besides carrying me around?" She's even aware enough to comment on her hairy legs. OK, maybe that's not so unusual.
She hasn't lost her sweetness or politeness. Becca wakes to Maryclare crying and tells her it's OK. She nods in agreement when she hears the love being whispered in her ear. She always says thank you if she is present.
No doubt about it, she's here until she gets KOed. She won't take a TKO or a judge's decision to that evil beast in the opposite corner. She will be going soon — too soon — but Rebecca refuses to go down now. Unless it's on her terms.
Rebecca still barrels her way to the bathroom 25 feet away, refusing to use the commode recommend by nurses. She is followed by one of us with arms outstretched in case she teeters during the wobbly sprint. When she gets there, Becca sits on the pot for 20 minutes or so. Can't tell whether she is sleeping or meditating. Just know she's not doing much of what most of us do when we get to the pot.
On Monday night, Abby asked me "Why won't mommy stop fighting this?" That says it all in the form of a question.
On Tuesday, her brother Norman told the social worker who was wondering about Becca's next journey:
"What Becca cared about is the fight and what happens to Abby." That says it all in the form of a statement.
It's Wednesday, and when the bedding and pads are changed, she doesn't just roll over and play dead. That would be too easy. She makes like a stick yogi, arches her back in the bridge position, while others shuffle sheets, pads and bolsters under her. Only then does she lower her distended belly back to the expensive Tempur-Pedic, now branded with her stains. No hospital bed for this one. No rubber sheets. No surrender! OK, surrender the excruciating pain to the liquid methadone stupor. Mouth wide open.
She asks what the date is because she remembers that the first Hospice nurse assessed her mental acuity with that question and other ones, like "what is your name?" It's akin to a referee questioning a just-decked boxer in order to decide whether to stop or continue the fight. Some how, some way she stays on her feet till the bell rings.
Rebecca asks what time it is because she wants to make sure she gets her medication on schedule. And she does this despite sleeping a good 20 hours a day and saying about the same number of words.
They include a sense of humor even though there's nothing to laugh about. She tells Norman: "What are you guys doing today besides carrying me around?" She's even aware enough to comment on her hairy legs. OK, maybe that's not so unusual.
She hasn't lost her sweetness or politeness. Becca wakes to Maryclare crying and tells her it's OK. She nods in agreement when she hears the love being whispered in her ear. She always says thank you if she is present.
No doubt about it, she's here until she gets KOed. She won't take a TKO or a judge's decision to that evil beast in the opposite corner. She will be going soon — too soon — but Rebecca refuses to go down now. Unless it's on her terms.
Tuesday, November 16, 2010
Resting Comfortably
On a day marked by a frantic stream of friends, food, family and administrative exercises with Hospice care — Hospice officially begins with first nurse today at 2 — Becca rallied late yesterday by displaying her vital signs: a fighting spirit, soft but lucid responses and even a few bed exercises led by the indomitable Maryclare McCauley. Becca had a good night, relatively speaking, or at least compared to Sunday night. As for the rest of us? Put it this way, I remember rubbing what i thought was Abby's back at 4:30 am, only to be corrected by her older sister, Izzy. "Dad, it's me." So if there are any typos...
There's been an outpouring of warm, wonderful e-mails to Becca from other LMS survivors about her inspiration and fighting heart. I wish I could read them all to you. I did read them to Becca. Some day I will post them. But for the rest of us NOT inflicted with this vile disease, I will relay a couple of messages that moved me to tears, hours and buckets into the wee hours of the morning.
A simple and moving message from an old friend who follows the blog: "You are all in our thoughts. I will try to focus on the positive memories, the hikes, the laughs, the long visits over cups of tea... "
And from Abby, the night owl, who likes to crawl in bed around 10 and ruminate till 2:
Abby: "I see photos of mommy and it makes me sad to see her now. I want all those photos of mommy next to the bed."
Me: "Which ones? Can’t picture them. I thought they were mostly of you."
Abby: "The ones where you look so happy together like the two of you when you were so happy in Italy."
Gut wrencher! See why the buckets were out last night. And that was not even the most heart wrenching one. But it is what connects us -- a beautiful picture and memory of happier times. One we will hold onto and cherish. Ones I remind Becca of as she nods in and out of consciousness.
I hope you will join us is sharing those memories. Hold onto those pictures!
Love,
Steve
There's been an outpouring of warm, wonderful e-mails to Becca from other LMS survivors about her inspiration and fighting heart. I wish I could read them all to you. I did read them to Becca. Some day I will post them. But for the rest of us NOT inflicted with this vile disease, I will relay a couple of messages that moved me to tears, hours and buckets into the wee hours of the morning.
A simple and moving message from an old friend who follows the blog: "You are all in our thoughts. I will try to focus on the positive memories, the hikes, the laughs, the long visits over cups of tea... "
And from Abby, the night owl, who likes to crawl in bed around 10 and ruminate till 2:
Abby: "I see photos of mommy and it makes me sad to see her now. I want all those photos of mommy next to the bed."
Me: "Which ones? Can’t picture them. I thought they were mostly of you."
Abby: "The ones where you look so happy together like the two of you when you were so happy in Italy."
Gut wrencher! See why the buckets were out last night. And that was not even the most heart wrenching one. But it is what connects us -- a beautiful picture and memory of happier times. One we will hold onto and cherish. Ones I remind Becca of as she nods in and out of consciousness.
I hope you will join us is sharing those memories. Hold onto those pictures!
Love,
Steve
Sunday, November 14, 2010
Space Wanted
Becca's health has taken a turn for the worse in the last five daze. Let's leave it at that. Wanted to say again that Becca needs to conserve her energy, especially so she can save it for Abby. As strange as it sounds, it is quite likely that by not being here you are helping Becca and us more. Time is precious. Becca is a trooper. Your presence is felt whether you are here or not. Take care of yourselves. I promise if anything happens that I will tell you.
Thanks for your understanding.
Steve
Thanks for your understanding.
Steve
Monday, November 8, 2010
Call First
According to my bouncers, too many people are being turned away at the door. Call first (510) 848-2415 so you don't waste your time. As mentioned in last post, you're free to visit Becca when it's convenient for you because I have no way of knowing when it's the right time for Becca and it will just confuse me if you ask me when a good time to come over is. I know you know this, but if you do come by, handle with care: look for a note on the door, (which might say she is asleep), play it by ear and most of all don't wear her out by having a long gab fest. She needs to conserve.
Thanks,
Steven L. Cohen
House Manager
2742 Derby Street
Berkeley, CA 94705
Thanks,
Steven L. Cohen
House Manager
2742 Derby Street
Berkeley, CA 94705
Thursday, November 4, 2010
Not a Pretty Picture
It makes me sick writing this, but she asked me to...
Becca continues to fight gamely, but she is clearly enveloped in pain, nausea and her body is depleted, weak and frail. The tumor in her abdomen swells while the rest of her body shrinks. Her hemoglobin count was 8.1 today, so she’s back in the cancer center for a transfusion on Saturday.
Not a lot of options, but they pretty much boil down to trying another treatment or getting some sort of hospice or palliative care. Quality of life versus quantity (of days). Inside I know she’s struggling with that. So are we. Outside, she fights on doggedly, and her fighting spirit told her to go with the treatment today. She’ll be starting Temador in a couple days, a chemo prescribed more often for brain tumors that is taken orally and which is very well tolerated by most people, meaning it doesn’t generally effect blood counts or cause nausea. Keeping those pills down may be another story. With Temador Becca could get more stability to keep the disease from growing, but she’s unlikely to see shrinkage. So best case, it’s a life extender that is not a huge risk. It will be six weeks before she even gets a scan. In the meantime, Xrays will suffice to see if there’s blockage.
If the tumor continues to expand or spread, the worst-case scenario would be a bowel obstruction. Or the tumor could impinge on something else in the area, like a kidney. While she could not survive a major operation, which would be a last resort, smaller procedures might be possible that involve different ways to drain the area, such as a nasal tube, a colostomy, a tube in through abdomen in other parts of stomach.
How much time does she have? No one knows. No one wants to ask.
Becca continues to fight gamely, but she is clearly enveloped in pain, nausea and her body is depleted, weak and frail. The tumor in her abdomen swells while the rest of her body shrinks. Her hemoglobin count was 8.1 today, so she’s back in the cancer center for a transfusion on Saturday.
Not a lot of options, but they pretty much boil down to trying another treatment or getting some sort of hospice or palliative care. Quality of life versus quantity (of days). Inside I know she’s struggling with that. So are we. Outside, she fights on doggedly, and her fighting spirit told her to go with the treatment today. She’ll be starting Temador in a couple days, a chemo prescribed more often for brain tumors that is taken orally and which is very well tolerated by most people, meaning it doesn’t generally effect blood counts or cause nausea. Keeping those pills down may be another story. With Temador Becca could get more stability to keep the disease from growing, but she’s unlikely to see shrinkage. So best case, it’s a life extender that is not a huge risk. It will be six weeks before she even gets a scan. In the meantime, Xrays will suffice to see if there’s blockage.
If the tumor continues to expand or spread, the worst-case scenario would be a bowel obstruction. Or the tumor could impinge on something else in the area, like a kidney. While she could not survive a major operation, which would be a last resort, smaller procedures might be possible that involve different ways to drain the area, such as a nasal tube, a colostomy, a tube in through abdomen in other parts of stomach.
How much time does she have? No one knows. No one wants to ask.
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