Rebecca Roberts Cohen
May 11, 1958 - Nov. 18, 2010
Rebecca Bond Roberts Cohen, a lifelong Berkeley resident and physical education teacher, died peacefully at her home on November 18 after a three-year battle with cancer.
She taught physical education at Berkeley’s Berkwood Hedge School for 22 years, and adaptive physical education for the Mount Diablo Unified School District for five.
“Becca was a talented and dedicated physical education teacher who shared a passion for exercise and fitness with all of her students,” said Berkwood Hedge School director Jane Friedman. “She was part of the fabric of the Berkwood Hedge School community as a committed teacher, dedicated parent and loving friend.”
Roberts Cohen earned an adapted physical education specialist credential in 2007 after completing courses at Oakland’s Holy Names College and San Francisco State University, and a BS degree in physical education from Sonoma State in 1986.
In addition to teaching, Roberts Cohen created Sesame Chew Crispies, one of the first organic energy bars in the early ’90s, and was a licensed massage therapist. A gifted outdoor athlete, Roberts Cohen was an avid rock climber, scaling some of Yosemite’s most difficult peaks in the late ’70s. Just one and a half seasons after picking up cycling, she qualified for and competed in the1982 National Road Race as one of the top cyclists in Northern California. She became a competitive swimmer and rower after a knee injury sidelined her nascent bicycle career.
In September 2007, Roberts Cohen was diagnosed with Leiomyosarcoma (LMS), a rare form of uterine cancer. She helped produce three benefits that raised nearly $30,000 for Leiomyosarcoma Research.
Roberts Cohen is survived by her mother, Janet Roberts of Berkeley; father, Harry Roberts of Berkeley; two brothers, Carl Roberts of Portland and Norman Roberts of New York City; a daughter, Abigail Cohen; step daughter, Isabel Cohen of Oakland; husband, Steven Cohen; and a host of her friends and companions.
Donations may be made to:
LMSarcoma Direct Research or LMSdr
Post Office Box 52697, Tulsa, Oklahoma 74152
http://www.lmsdr.org/donatenow.php
or the donor’s choice of charities.
Memorial services will be held on Sunday, January 16 from 2-4 pm
St. John's Church
2727 College Ave. (at Garber)
Berkeley, CA 94705
San Francisco Chronicle 12/12/10
Monday, December 6, 2010
Friday, November 19, 2010
New Memorial Location
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
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
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.
Thursday, October 28, 2010
Rough Patch
Becca has been getting worse since October 10, when she had another successful benefit for LMS at Julia Morgan Theater. She made it to Santa Monica to get the Yondelis (mentioned in her previous post) but she never got it because some enzyme in her liver wouldn't cooperate, so she had to return home the next day. The enzyme is still too high to go back down so she's tweaking the pain medication to see if that helps. She is also getting hydrated for a couple days at Alta Bates Cancer Center. Appetite is not great, and constipation is a constant problem. I wish I had better news to report.
There was a really good article that chronicles Becca's plight and her caring cancer community in the East Bay Monthly, just out on Tuesday. It includes good photos too. Check it out here:http://www.themonthly.com/feature1011.html
...and think good thoughts. She needs them. We need them.
Love,
Steve
There was a really good article that chronicles Becca's plight and her caring cancer community in the East Bay Monthly, just out on Tuesday. It includes good photos too. Check it out here:http://www.themonthly.com/feature1011.html
...and think good thoughts. She needs them. We need them.
Love,
Steve
Friday, October 1, 2010
Update
Life is not easy, no one every said it would be. These last weeks I have felt that the tumors were growing, I could feel shifts and changes in my back and pelvis. Given these feelings, I pushed my scan date up two weeks. The scan showed that the tumors have grown, argh. As you can imagine this was VERY depressing news as I was hoping to get some relief on Votrient.
My plan now is to do what they call a compasstionate care clinical trial (a drug called Yondelis) in Santa Monica which I will start in just under 3 weeks, not soon enough in my mind but a "flush out" period is need before I start the new drug.
I am trying to keep my head up and look on the bright side, which isn't easy. The "bright" side is the are no new tumors, nothing in vital organs other than the right kidney, and one only needs one kidney, right?
This is not fun.
Becca
My plan now is to do what they call a compasstionate care clinical trial (a drug called Yondelis) in Santa Monica which I will start in just under 3 weeks, not soon enough in my mind but a "flush out" period is need before I start the new drug.
I am trying to keep my head up and look on the bright side, which isn't easy. The "bright" side is the are no new tumors, nothing in vital organs other than the right kidney, and one only needs one kidney, right?
This is not fun.
Becca
Thursday, September 2, 2010
not feeling great
despite the "good" news I am emotionally very tenuous, the other word for this is depressed. I ve been closing in and been spending lots of time alone with the exception of a few folks. I am having a hard time staying in touch. Thank you everyone for continuing to reach out even when I don't respond.
I just got an email from Dr. Sabbatini saying that the response I got on the Votrient is typical, and he thinks it's good news. That makes me a bit happier.
one of the contributing factors to my depression is I am not fully funtional; my back is really tight where the tumor is and my left leg is slighlty numb....arghh. Okay, enough.
Some good news is we're having the second annual LMS Benifit on October 10th at 7. The Performer is Don Reed, he's fantastic! tickets will be available soon.
Becca
I just got an email from Dr. Sabbatini saying that the response I got on the Votrient is typical, and he thinks it's good news. That makes me a bit happier.
one of the contributing factors to my depression is I am not fully funtional; my back is really tight where the tumor is and my left leg is slighlty numb....arghh. Okay, enough.
Some good news is we're having the second annual LMS Benifit on October 10th at 7. The Performer is Don Reed, he's fantastic! tickets will be available soon.
Becca
Saturday, August 28, 2010
Stability
Apologies for being a bad uninvited and unauthorized guest blogger...
The news is good. After two weeks of radiation and about four weeks of Votrient, scan showed the tumor in pelvis area is smaller, the one in chest is stable, and there are tiny (1 mm) increases in nodules in right kidney and one lung lobe since last scan in early July. More encouraging is that the pain has been on the wane for two weeks. The pain meds have been dropping out and the woman looks better, too. The insurance appeal even went through.
All told, a pretty nice ride on the roller coaster.
Steve
The news is good. After two weeks of radiation and about four weeks of Votrient, scan showed the tumor in pelvis area is smaller, the one in chest is stable, and there are tiny (1 mm) increases in nodules in right kidney and one lung lobe since last scan in early July. More encouraging is that the pain has been on the wane for two weeks. The pain meds have been dropping out and the woman looks better, too. The insurance appeal even went through.
All told, a pretty nice ride on the roller coaster.
Steve
Friday, August 6, 2010
Good News, Bad News, but on balance, Better News
Becca received a report from an MRI on her pelvis this week. The good news is that her larger tumors, which had not responded to her most recent chemotherapy (AIM), have substantially shrunk by 2, 3 and 6 centimeters, respectively, since her last scan on July 6. They have gone from big and hard to smaller and softer. Speculation centers on the possibility of the Votrient pills she has been taking for about 10 days working super well, but your guess is as good as the next doctor’s.
Secondly, her lungs are clear so that one appears to be status quo.
In the bad news department, there are two newly identified small tumors. There are two areas of concern:
Most concern is the soft tissue area growing out of her sacrum into tissues parallel to it and trapping the nerve root area. This is what has been causing her really, really bad pain. Becca continues to take methadone, which is sort of the “backbone for pain”; Neurontin for nerve pain; and Dilaudid for extra pain as needed.
The second area of concern is a small tumor nearing the spinal canal, and, of course, you don’t want it to let anything into that canal (spinal cord = bad).
Doctor Tracy described the new tumors as “not an emergency” but better to radiate sooner than later. So presto, Becca begins radiation at 8 am sharp on Monday morning, which is as soon as possible. This will be standard external beam radiation, which is not considered dangerous, as it works around the nerve.
Abby and I will be off to Berkeley family camp tomorrow morning, so I wanted to get this off before I go offline.
Best,
Steve
Secondly, her lungs are clear so that one appears to be status quo.
In the bad news department, there are two newly identified small tumors. There are two areas of concern:
Most concern is the soft tissue area growing out of her sacrum into tissues parallel to it and trapping the nerve root area. This is what has been causing her really, really bad pain. Becca continues to take methadone, which is sort of the “backbone for pain”; Neurontin for nerve pain; and Dilaudid for extra pain as needed.
The second area of concern is a small tumor nearing the spinal canal, and, of course, you don’t want it to let anything into that canal (spinal cord = bad).
Doctor Tracy described the new tumors as “not an emergency” but better to radiate sooner than later. So presto, Becca begins radiation at 8 am sharp on Monday morning, which is as soon as possible. This will be standard external beam radiation, which is not considered dangerous, as it works around the nerve.
Abby and I will be off to Berkeley family camp tomorrow morning, so I wanted to get this off before I go offline.
Best,
Steve
Wednesday, July 28, 2010
Big Pain, No Gain
This is an unauthorized blog post, but an overdue one nevertheless. It's been a painful couple of weeks for Becca. She started taking the Votrient pills (mentioned in her last post) this week, but it will be a good six to eight weeks to see whether they are doing the trick. Meanwhile the meter is running as the #$%&!@% insurance company denled coverage. We're appealing. Another painful process.
The physical pain is sciatica, an intense deferred pain centered in her right upper thigh area, not near the abdominal tumors. Two theories are a blood clot or bone metasasis. Tomorrow Becca gets an X-ray and a sonogram to see if anything shows up. Then there's the pain medication, which has been ramped up from Vicodin to Dialudid to, as of today, Dialudid and Methadone. Serious stuff, and she is not even trying to kick heroin. That's on top of the Adavan for anxiety, nausea and muscles, and God knows what else.
My mom used to take Adavan during her sunset daze. She also described painful people as "pills" during her glory days. I used to think that was a funny, jaded expression. Now I'm not so sure.
Steve
The physical pain is sciatica, an intense deferred pain centered in her right upper thigh area, not near the abdominal tumors. Two theories are a blood clot or bone metasasis. Tomorrow Becca gets an X-ray and a sonogram to see if anything shows up. Then there's the pain medication, which has been ramped up from Vicodin to Dialudid to, as of today, Dialudid and Methadone. Serious stuff, and she is not even trying to kick heroin. That's on top of the Adavan for anxiety, nausea and muscles, and God knows what else.
My mom used to take Adavan during her sunset daze. She also described painful people as "pills" during her glory days. I used to think that was a funny, jaded expression. Now I'm not so sure.
Steve
Wednesday, July 14, 2010
unexpected news
Last Thursday I got disappointing news that the chemo therapy protocol that I am on is not working. The tumors are growing in both my pelvis and back. This is contrary to the encouraging news from few weeks ago that the tumor on my back was shrinking. After a few days of shock and despair, I contacted Dr. Sabbatini, the sarcoma specialist in MSKCC in NYC and he heavily suggested a drug call Votrient. Votrient is a newly approved FDA drug that is used for renal cancer and is in phase III studies for sarcoma. It's not a chemotherapy but a tyosine kinase inhibitor which blocks proteins, I don't understand it fully but I know the drug works very differently than chemotherapy. I may have some hoops to jump through to get Votrient but I am pretty certain I can get it and I am doing everything I can to expedite the process.
I am still working on keeping my weight up which has become harder because my appetite isn't as hardy as it was. I frequently have abdominal pain which is a real downer for eating and to make things more complicated, I am super finicky about what I want to eat; one minute its roast beef the next cinnamon bread.
I hope next time I post I will have better news.
Becca
I am still working on keeping my weight up which has become harder because my appetite isn't as hardy as it was. I frequently have abdominal pain which is a real downer for eating and to make things more complicated, I am super finicky about what I want to eat; one minute its roast beef the next cinnamon bread.
I hope next time I post I will have better news.
Becca
Tuesday, June 22, 2010
it's all about the food
I am eating eating and still look emaciated. I feel better than I look, thanks goodness. I am a roaring 105 pound, and pretty much eat continuously throughout the day, and why do I look so skinny? Don't know, but I am working hard on gaining weight any way I can. Starting with my morning breakfast shake of hemp milk, ground, flax seed, omega 3 oil, ice cream (or Coconut Bliss), banana, dates, berry concentrate, greens mix, protein powder, whey powder and vitamin C goo, whew! I haven't calculated but I think that's a lot of calories.
I have a few more days of home hydration through my port and than I am free!!! I feel suspiciously good, and waiting for the other shoe to drop, maybe it won't, fingers crossed. So far I have had no nausea, no fatigue, no pain, and my digestion is working well. Yes! I can feel the tumor on my back that Dr. Tracy measured two weeks ago and it's definately getting smaller and softer.
All things considered, things are good
Becca
I have a few more days of home hydration through my port and than I am free!!! I feel suspiciously good, and waiting for the other shoe to drop, maybe it won't, fingers crossed. So far I have had no nausea, no fatigue, no pain, and my digestion is working well. Yes! I can feel the tumor on my back that Dr. Tracy measured two weeks ago and it's definately getting smaller and softer.
All things considered, things are good
Becca
Monday, June 21, 2010
Thursday, June 17, 2010
Cruisin'
Today on 2 North I could barely keep up with Becca as she did her ward wheelies, with bags in tow no less. That was after she wolfed down a Japanese steak lunch. I missed high tea, but I know it included stewed fruit and tapioca pudding. Man, it was like John Belushi at the Samurai Deli on SNL. What's next? "We ah here to pump... YOU up!"?
OK, maybe I'm exaggerating a bit, but all signs are good. Round 2 looks a whole lot different than Round 1. Stay tuned.
Go Celtics!
OK, maybe I'm exaggerating a bit, but all signs are good. Round 2 looks a whole lot different than Round 1. Stay tuned.
Go Celtics!
Tuesday, June 15, 2010
Encouraging News
After a long wait at the cancer center to see Dr. Tracy, at least it wasn't three hours like last week, I got the good news that the tumor on my back has shrunk a centimeter! YES! this is VERY good news.
Becca
Becca
Monday, June 14, 2010
chemo sucks!
This post is long overdue, I know, I have left many of you hanging, sorry. It's only been a few day since I feel that I have the energy and focus to type. With each day I have felt better since my release from the hospital on May 31st. The first few days I had extreme nausea, then unbelievable fatigue, and all the while stomach cramps and a digestive system that couldn't quite pull it together.
Now just two day before I go in for my second round I am feeling the best I have, not perfect but okay. The last few days I have taken short walks around the neighborhood, its been such beautiful weather, and the flowers are breath taking! The plan is to go into the hospital early on Wednesday and be out by Sunday. In some ways I think it will be easier this time just because I know how to "work' the system, which med to ask for and when, and certainly the transition home will be easier, I now Know that I take the nausea meds whether I feel nauseous of not, big mistake last time not staying on top of that!.
Finally, I have the best group of friends and family EVER! I have been surrounded with the most loving, informed and caring group of people and each and every one of them have gone the extra mile to help me with whatever....holding throw up buckets, driving to appointments, delivering meals, keeping me company, I could go on and on. You guys rock!
Abby is off to Camp Kesem, the "cancer" camp, this week and having the time of her life as she has for the past 2 summers, she is home on Sunday.
Visitors in the hospital are welcome, just call before you come.
xoxo,
Becca
Now just two day before I go in for my second round I am feeling the best I have, not perfect but okay. The last few days I have taken short walks around the neighborhood, its been such beautiful weather, and the flowers are breath taking! The plan is to go into the hospital early on Wednesday and be out by Sunday. In some ways I think it will be easier this time just because I know how to "work' the system, which med to ask for and when, and certainly the transition home will be easier, I now Know that I take the nausea meds whether I feel nauseous of not, big mistake last time not staying on top of that!.
Finally, I have the best group of friends and family EVER! I have been surrounded with the most loving, informed and caring group of people and each and every one of them have gone the extra mile to help me with whatever....holding throw up buckets, driving to appointments, delivering meals, keeping me company, I could go on and on. You guys rock!
Abby is off to Camp Kesem, the "cancer" camp, this week and having the time of her life as she has for the past 2 summers, she is home on Sunday.
Visitors in the hospital are welcome, just call before you come.
xoxo,
Becca
Sunday, May 30, 2010
Home Sweet Tome
Becca returned home this afternoon in way better shape than when she left six days ago. She's happy to be here! The view is even better than it is in room 2378, plus you can open the windows here. She's doing a hydration bag at night and that's it for now. The only blip is that she was sick to her stomach a couple of times this afternoon, but that may be that she just moved around more than usual. You don't have to climb stairs when you take a spin around the hospital hallway.
It's three weeks until she has to go back for chemo! And even though I'm starting to get really cozy with Becca's blog (21 posts in 17 days) — even fantasizing that this could be my big break, like a "Daily Steve" kind of deal (get it? "Daily Beast," "Daily Kos", and sorry that I had to explain that) — I'm thinking we go more with the ebb and flow and less with the blow by blow; transition it back to Becca; maybe drop in with the occasional op-ed, such as "64 Questions to Avoid Asking Your Patient... Again", "Brighten Up Your Cocktail Hour" or "Why the Warriors Never Answer the Call".
Trust me, you'll hear from me if there are special circumstances or needs. And let's hope there aren't! Meanwhile, visiting hours are now open. Keep those cards and letters coming. Come on down if you're healthy. It will bring a smile to Becca.
Love,
Steve
It's three weeks until she has to go back for chemo! And even though I'm starting to get really cozy with Becca's blog (21 posts in 17 days) — even fantasizing that this could be my big break, like a "Daily Steve" kind of deal (get it? "Daily Beast," "Daily Kos", and sorry that I had to explain that) — I'm thinking we go more with the ebb and flow and less with the blow by blow; transition it back to Becca; maybe drop in with the occasional op-ed, such as "64 Questions to Avoid Asking Your Patient... Again", "Brighten Up Your Cocktail Hour" or "Why the Warriors Never Answer the Call".
Trust me, you'll hear from me if there are special circumstances or needs. And let's hope there aren't! Meanwhile, visiting hours are now open. Keep those cards and letters coming. Come on down if you're healthy. It will bring a smile to Becca.
Love,
Steve
The Graduates
Izzy from Scripps College; Abby from Berkwood Hedge (elementary)
at Lisa and Wayne's graduation party for Ms. Is yesterday
Up, Up and a Weigh
Abby and I visited this morning. Becca's feeling mo beta in every department. The before-and-after hospital needle is moving significantly toward the plus side. The Lasix is working and she's down to her last drip: a hydrating bag. Becca's going to be released either today or tomorrow, depending how much she weighs. If she's 10 or fewer pounds more than her hospital weigh-in, she's out today; more than 10 and she stays. I am forbidden from giving the actual numbers. So barring setbacks, she's home for the Memorial Holidaze. Visitors welcome.
Steve
Saturday, May 29, 2010
Bloated
First of all, no visitors today unless you've heard directly from Becca or me. A full bladder gets her a 10 on the discomfort scale, and it's been that way since Friday at 6 pm. The nurses are doing lasix and Becca has to pee every 15 minutes (OK, she told me not to tell everybody that) but that's what's supposed to do. Last chemo bag will be complete at 4 pm today. Doctor should be in this morning. Not sure when Becca will be outta here, probably tomorrow but possibly Monday.
Off to Livermore for soccer.
Off to Livermore for soccer.
Thursday, May 27, 2010
Tip Off
Becca's cocktails started around 2:30 Thursday; I was at the Berkwood Hedge wine tasting at 6:30. She seems to be steadily improving: appetite, color and mobility (with IVs in tow) and less pain. Looks like a Sunday release. Apparently the more negative side effects of this chemo don't kick in for a week or so. Meanwhile, Azubuike's Uncle has not appeared. The Golden State Warriors disappoint once again.
Wednesday, May 26, 2010
Kelenna Azubuike's Plan of Care
The whiteboard across from me in Summit Hawthorne 350 Hospital, Room 2378 reads:
RN: Ernest
May 26, 2010
Wednesday
PLAN OF CARE
1. Pain Control
2. No nausea or vomiting
3. Good nutrition
4. Monitor intake and output
5. Chemo with minimal side effects
6. Kelenna Azubuike?
Read: Cocktail Hour will begin shortly. Bring on the snooze control.
Becca hasn't woken up since I walked in and started typing two feet from her ears.
Musical rooms yesterday got us a nice private room with a view. The painting is even bearable. Probably as good as it gets here at SomePit Hospital,
Re: #6 (fictional). Rumors are flying that one or both of Becca's two Nigerian nurses is the uncle(s) of Kelenna Azubuike. Don't tell me you don't know who Kelenna Azubuike is sports fans! Hint: hapless Bay Area pro basketball team. OK, Becca didn't know either. But trust me, that will be my first question to them.
Speaking of questions: Is there some reason that every doctor, nurse and janitor asks the same 64 questions that they already have the answers to, like "What's your pain level?" or "Do you have any allergies?" But Uchechi, one of the Nigerian nurses, sheepishly asked a new one: "Have you been abused? I have to ask it; it's on the form."
"Can I leave the room now?" I muttered.
You see where I'm going with this, don't you? My first novel based on a mostly true story, or possibly the less ambitious blog "What's up with Steve?"
Ciao for Now
RN: Ernest
May 26, 2010
Wednesday
PLAN OF CARE
1. Pain Control
2. No nausea or vomiting
3. Good nutrition
4. Monitor intake and output
5. Chemo with minimal side effects
6. Kelenna Azubuike?
Read: Cocktail Hour will begin shortly. Bring on the snooze control.
Becca hasn't woken up since I walked in and started typing two feet from her ears.
Musical rooms yesterday got us a nice private room with a view. The painting is even bearable. Probably as good as it gets here at SomePit Hospital,
Re: #6 (fictional). Rumors are flying that one or both of Becca's two Nigerian nurses is the uncle(s) of Kelenna Azubuike. Don't tell me you don't know who Kelenna Azubuike is sports fans! Hint: hapless Bay Area pro basketball team. OK, Becca didn't know either. But trust me, that will be my first question to them.
Speaking of questions: Is there some reason that every doctor, nurse and janitor asks the same 64 questions that they already have the answers to, like "What's your pain level?" or "Do you have any allergies?" But Uchechi, one of the Nigerian nurses, sheepishly asked a new one: "Have you been abused? I have to ask it; it's on the form."
"Can I leave the room now?" I muttered.
You see where I'm going with this, don't you? My first novel based on a mostly true story, or possibly the less ambitious blog "What's up with Steve?"
Ciao for Now
Tuesday, May 25, 2010
Still Waiting for Cocktail Hour
After an early morning wake-up call, things have settled down. Becca's blood work was good at Alta Bates this morning. The abdominal pain has subsided without medication. She had a hefty bowl of oatmeal this morning and has been sleeping at home for a good 1.5 hours now. We're still waiting for a room assignment at Summit Hospital because they don't want Becca to have to change rooms once she gets there.
In short, we're still looking forward to our respective cocktails.
In short, we're still looking forward to our respective cocktails.
Monday, May 24, 2010
Cautiously Optimistic
Nice, easy, quiet day so far. Reason for optimism came in report on the tissue sample that was tested: "The results indicate an above-average probability of clinical benefit for treatment on ifosfamide." Ifosfamide would be the "I" in the AIM chemo cocktail (love that word, don't you?) Becca will be getting starting tomorrow. The oncologists take these tissue reports with plenty of salt. Becca took it well. Perked her right up. I even had to mute the "better-mood music" I was piping upstairs to the bedroom.
Blog You Tomorrow, (but probably after cocktail hour)
SC
Blog You Tomorrow, (but probably after cocktail hour)
SC
Today
Keepin' it quiet here. Just Steve and Becca from 11 until 6. No calls. No trespassing. Becca is weak and she has a big week ahead of her. Thanks for your understanding.
Saturday, May 22, 2010
Play it By Ear this Weekend
Tough night with pressure on the lower intestine, though no nausea and vomiting like yesterday morning. Breakfast: tea, Milk of Magnesia, steely oatmeal and maybe a Miralax chaser. Intestinal fortitude.
Our Derby neighbor/savior Melissa will be sending out a feeding schedule and minor instrux to some of you local heroes. Don't feel obligated as there are way too many names for twice a week requests. Especially if you live far away. (Hey, I can write in incomplete sentences. I guess that makes me a gifted writer?) We are blessed with best friends as neighbors, as in about 25 feet away. I can't tell you how reassuring that makes me feel right now. We care about our far-away best buddies too, of course. It's just that when you're potentially making emergency decisions in the middle of the night, it's really nice to know that you don't need to drive to, say, Mill Valley (aka CohenVille) to drop Abby off.
So about visiting today or tomorrow. Abby and I will be out and about most of day. Best guess is to play it by ear. If you don't get a response when you knock gently or call the home number loudly, you'll know why. Becca does check her e-mail occasionally too.
Monday morning Becca has a heart check. Tuesday 7:15 it's screen time before heading off to Summit for chemo blasts.
Keep the Faith.
Love,
Steve
Our Derby neighbor/savior Melissa will be sending out a feeding schedule and minor instrux to some of you local heroes. Don't feel obligated as there are way too many names for twice a week requests. Especially if you live far away. (Hey, I can write in incomplete sentences. I guess that makes me a gifted writer?) We are blessed with best friends as neighbors, as in about 25 feet away. I can't tell you how reassuring that makes me feel right now. We care about our far-away best buddies too, of course. It's just that when you're potentially making emergency decisions in the middle of the night, it's really nice to know that you don't need to drive to, say, Mill Valley (aka CohenVille) to drop Abby off.
So about visiting today or tomorrow. Abby and I will be out and about most of day. Best guess is to play it by ear. If you don't get a response when you knock gently or call the home number loudly, you'll know why. Becca does check her e-mail occasionally too.
Monday morning Becca has a heart check. Tuesday 7:15 it's screen time before heading off to Summit for chemo blasts.
Keep the Faith.
Love,
Steve
Friday, May 21, 2010
No Visitors for Now
Becca's wiped, so no drop ins for now. You can call and if she wants visitors (doubtful), she'll let you know.
Steve
Steve
She's Not Here
Becca's at Alta Bates Cancer Center on Dwight getting a transfusion. Probably won't be home until 5 pm. You could possibly visit her there. Just ask the scheduler what room she's in. I think it may be 1179. I wouldn't wake her up if she's asleep. Otherwise, check back home after 5. But knock gently.
Later,
Steve
Later,
Steve
Thursday, May 20, 2010
AnemIck
Becca's pretty much set to begin chemo Tuesday, but at today's appointment I questioned if she was ready, since she's got about as much energy as a slug on a slow day. Lab test revealed an 8.7 hemoglobin count (norm around 12), so she got a transfusion. I expect her to be moving furniture shortly. Yesterday's call for visitors is still on. Just call or ring doorbell first. Toni Martin, yesterday's surprise guest did that and came with the sweetest smelling Sweet Williams? from her garden. They lit up the whole house. Can I get a witness? Thanks Toni. Oh, and Diana Lion folded the laundry which instantaneously got her in my hall of fame. Now do you see why I like visitors?
Steve
Steve
Wednesday, May 19, 2010
Better Daze
The stomach and headache have corrected. Yay! Becca even put some air in her system with a walk today. She only complained about being out of it, a cumulative effect I'm sure.
Becca seems to rally when she has visitors, plus it distracts her and sharpens her mind.
Here are some visiting hours you can key on when Abby and I won't be here:
Thursday after 5
Friday afternoon
Saturday 9:30-1
Sunday 11:30 on
Monday 5 on
But you can come any time Becca is up for it. Just phone first and don't tell her I wrote this :—)
Steve
Becca seems to rally when she has visitors, plus it distracts her and sharpens her mind.
Here are some visiting hours you can key on when Abby and I won't be here:
Thursday after 5
Friday afternoon
Saturday 9:30-1
Sunday 11:30 on
Monday 5 on
But you can come any time Becca is up for it. Just phone first and don't tell her I wrote this :—)
Steve
Tuesday, May 18, 2010
Step on the Gas
Becca had bad stomach cramps last night after she went to bed. They don't appear related to last week's pushing on the bowels, More likely they're related to her surgery and recent diet. She called one of those gastrowhatsitcalledologists but hasn't heard back. Looks like we'll be sticking with the soft stuff for now. Later this week we'll start to use the website lotsahelpinghands (http://www.lotsahelpinghands.com) so ya'll can plug in where needed and share the load falling on about six of us. Thanks for rallying to support her.
Steve
Steve
Monday, May 17, 2010
Same Pain, Some Gain
I pretty much knew "What's up with Becca" when I walked into my neighbor Tucker's house upon our return to see Becca lying on her couch eating a beautiful looking meal (at least it looked beautiful after feasting on the fast foods of Ontario Airport). So the headache is still there, although not quite as intense as the spinal force variety, but the appetite and edible food are back and staying down (knock on keyboard). We're waiting for the anesthesiologist to call back.
One doctor who did call back was Dr. Sabbatini from Sloan Kettering Hospital in NYC. Sounds like he recommends the chemotherapy AIM (Adriamycin + Ifex + Mesna), which is a really toxic brew that has shown success with LMS. So when Becca is up and at 'em in a week or so, she'll be getting AIM in the hospital for three or four days, then get three weeks off, then a second three or four day stint, then a scan for results. I'm waffling on the exact number of treatments here as this is second-hand info and I don't have my crack fact-checking team here led by Tucker Malarkey. And don't let that name fool you, cuz she doesn't tucker out and she ain't full of malarkey. Sorry, Tucker I just pity your parents' name choice a little.
Hopefully some good ol' fashion routine will kick in this week around here. We'll keep you posted.
Warmly,
Steve
One doctor who did call back was Dr. Sabbatini from Sloan Kettering Hospital in NYC. Sounds like he recommends the chemotherapy AIM (Adriamycin + Ifex + Mesna), which is a really toxic brew that has shown success with LMS. So when Becca is up and at 'em in a week or so, she'll be getting AIM in the hospital for three or four days, then get three weeks off, then a second three or four day stint, then a scan for results. I'm waffling on the exact number of treatments here as this is second-hand info and I don't have my crack fact-checking team here led by Tucker Malarkey. And don't let that name fool you, cuz she doesn't tucker out and she ain't full of malarkey. Sorry, Tucker I just pity your parents' name choice a little.
Hopefully some good ol' fashion routine will kick in this week around here. We'll keep you posted.
Warmly,
Steve
Sunday, May 16, 2010
Long Distance
Hi Scott and Tanya,
I think we're going to stay at the Doubletree Hotel here in Claremont instead of drive to Pasadena tonight. Becca is doing better after hot patch. I told our heroic gastrowhatsitcalledologist neighbor friend Mike that the only thing worse than a spinal headache must be getting off caffeine. (He thought it was funny anyway. That's not why he's our hero. He's our hero cuz he makes house calls at 9:30 the night before surgery and checks that things are moving in Becca's tummy.) Norman and Janet had a six hour trip yesterday with Becca to UCSF. They got stuck in traffic to and from SF and waited through a power outage at UCSF. Becca was able to hold down a graham cracker while there. Sorry I missed the celebration! Norman is spending the night again while we're down here. I hope he takes care of Austin too. We'll be back tomorrow. Catch you next time. Sorry we missed you.
Steve
I think we're going to stay at the Doubletree Hotel here in Claremont instead of drive to Pasadena tonight. Becca is doing better after hot patch. I told our heroic gastrowhatsitcalledologist neighbor friend Mike that the only thing worse than a spinal headache must be getting off caffeine. (He thought it was funny anyway. That's not why he's our hero. He's our hero cuz he makes house calls at 9:30 the night before surgery and checks that things are moving in Becca's tummy.) Norman and Janet had a six hour trip yesterday with Becca to UCSF. They got stuck in traffic to and from SF and waited through a power outage at UCSF. Becca was able to hold down a graham cracker while there. Sorry I missed the celebration! Norman is spending the night again while we're down here. I hope he takes care of Austin too. We'll be back tomorrow. Catch you next time. Sorry we missed you.
Steve
Saturday, May 15, 2010
Post-Surgical Pain
Becca has had a big-A splitter ever since surgery. Thank the anesthesiologist and nurse brigade for putting her in a recliner instead of the reclined position. No medication has stopped the pain or the nausea. She's boney bones right now, which is a little scary (not that the whole deal isn't). So after a 14 hour day in the city yesterday, one hour and 45 minutes of which were spent in traffic (thankfully she slept through), she's headed back to UCSF with Janet and Norman for a blood patch to alleviate the pain. And I'm headed to Abby's class play. If you want to dig deeper into what's behind the pain and the relief, go here:
http://www.webmd.com/pain-management/pain-management-spinal-headaches
Bye for Now
http://www.webmd.com/pain-management/pain-management-spinal-headaches
Bye for Now
Friday, May 14, 2010
Surgery News
The good/bad news frame doesn’t work very well here, but it’s a start:
Good News: The minimally invasive Laparoscopic (minicam) surgery gave them the needed useful information to make sound decisions, just what it was supposed to do.
Bad News: That information showed several small nodules in the abdominal wall that were not visible in earlier scans and that the major surgery to remove all tumors in the pelvis area is off the table for now. Getting stability and control through systemic treatment (chemo) is the next step.
Other Good News:
They removed the small tumor in the Morrison’s Pouch between kidney and liver. Couldn’t see kidney (on back side)
They got her two tissue samples for testing packaged and ready for delivery.
She’ll be out of recovery on way home late today. No dietary restrictions.
Time to Regroup and move on to the next stage of this marathon.
With Love,
Steve
Good News: The minimally invasive Laparoscopic (minicam) surgery gave them the needed useful information to make sound decisions, just what it was supposed to do.
Bad News: That information showed several small nodules in the abdominal wall that were not visible in earlier scans and that the major surgery to remove all tumors in the pelvis area is off the table for now. Getting stability and control through systemic treatment (chemo) is the next step.
Other Good News:
They removed the small tumor in the Morrison’s Pouch between kidney and liver. Couldn’t see kidney (on back side)
They got her two tissue samples for testing packaged and ready for delivery.
She’ll be out of recovery on way home late today. No dietary restrictions.
Time to Regroup and move on to the next stage of this marathon.
With Love,
Steve
Waiting Game
Nervously waiting for a report on what doctors saw with their "internal mini cam(s)"
During pre-op, we had a good discussion/full briefing with all doctors (surgeon, urologist, anesthesiologist)
Becca signed waivers on various organs
Basically, docs say it's 50/50 for goal of removing all the tumors they can see.
All or nothing proposition. Nothing means chemo in a week to two weeks after recovery from minor.
New possibility of having to remove bladder was a surprise.
Kidney could be in question but could be dealt with after surgery with a needle incision (a good thing)
Pretty much comes down to intestine area.
It's a gut wrencher here at Mt. Zion.
Steve
During pre-op, we had a good discussion/full briefing with all doctors (surgeon, urologist, anesthesiologist)
Becca signed waivers on various organs
Basically, docs say it's 50/50 for goal of removing all the tumors they can see.
All or nothing proposition. Nothing means chemo in a week to two weeks after recovery from minor.
New possibility of having to remove bladder was a surprise.
Kidney could be in question but could be dealt with after surgery with a needle incision (a good thing)
Pretty much comes down to intestine area.
It's a gut wrencher here at Mt. Zion.
Steve
Thursday, May 13, 2010
Supporting and Reporting Becca
Hi,
We are so grateful for all you are doing and have done for Becca, and know you have Becca's best interests in mind and hearts. During these difficult circumstances (surgery, healing and everything in between and beyond), we will need to support and take care of each other. For the sake of all of us, especially Becca and Abby, we are trying to keep life as calm and stable as possible. I know I won't be able to give Becca and Abby the undivided attention they deserve without that structure.
So starting on Friday when we first get word of Becca's surgery, (which probably won't be until late afternoon), I will be guest blogging regular updates (at least once a day) with all pertinent information, including daily scheduling, nourishment and other needs to her website: "What's Up with Becca" (http://whatsupbecca.blogspot.com). The blog has some advantages because it's sort of a one-spot collection of all news and comments. Of course we will also contact individuals separately to communicate Becca's special needs. Abby is covered through Monday as she and I will be at Isabel's college graduation. Abby is also in her class play Friday and Saturday, so I'll be videotaping like crazy.
If you have any difficulty getting on the site or any questions, please don't hesitate to contact me via e-mail at stevecohen@berkeley.com. That's the best way to reach me.
Again, "What's Up with Becca" is at http://whatsupbecca.blogspot.com
Thanks for your understanding and support.
Love,
Steve
We are so grateful for all you are doing and have done for Becca, and know you have Becca's best interests in mind and hearts. During these difficult circumstances (surgery, healing and everything in between and beyond), we will need to support and take care of each other. For the sake of all of us, especially Becca and Abby, we are trying to keep life as calm and stable as possible. I know I won't be able to give Becca and Abby the undivided attention they deserve without that structure.
So starting on Friday when we first get word of Becca's surgery, (which probably won't be until late afternoon), I will be guest blogging regular updates (at least once a day) with all pertinent information, including daily scheduling, nourishment and other needs to her website: "What's Up with Becca" (http://whatsupbecca.blogspot.com). The blog has some advantages because it's sort of a one-spot collection of all news and comments. Of course we will also contact individuals separately to communicate Becca's special needs. Abby is covered through Monday as she and I will be at Isabel's college graduation. Abby is also in her class play Friday and Saturday, so I'll be videotaping like crazy.
If you have any difficulty getting on the site or any questions, please don't hesitate to contact me via e-mail at stevecohen@berkeley.com. That's the best way to reach me.
Again, "What's Up with Becca" is at http://whatsupbecca.blogspot.com
Thanks for your understanding and support.
Love,
Steve
Wednesday, May 12, 2010
headed for surgery...I think
I am headed for surgery in two days. The plan is to go in with cameras first to determine if the surgery can safely get all the disease out, if that looks possible then they will go forward with the surgery, if not I will go the chemo therapy route. There are pros and cons to both routes, and neither is perfect but we're going to work it best we can.
I will try to be in touch the best I can through this. Thanks to all my friends and family who have been such a tremendous support.
Becca
I will try to be in touch the best I can through this. Thanks to all my friends and family who have been such a tremendous support.
Becca
Monday, May 3, 2010
cancer hell redux
It's always hardest to share the bad news, and bad news it is. My scans of the 19th show progression in both the pelvic and rib tumors. Given this growth, I am no longer on the Gemzar the drug that has worked for me for all these months.
This past week I have met with two surgeons at UCSF, an abdominal surgeon and the thoracic surgeon and the Dr. Jahan the medical oncologist. It's not so clear cut what my next step should be. There're some chemo drugs that I can consider and there's surgery. The two surgeons both said that surgery is "feasible" but had some concerns about the disease coming back while recovering from surgery, precluding me from doing a systemic treatment while recovering. That is one perspective. As difficult as surgery is and the fact that we don't know what may or may not crop up, it's near 100% it will get the disease out of my pelvis and abdomen. The plan is that after I recover from the pelvic surgery I would have the surgery to get the rib tumor out. After all that, then , IF NECESSARY, after recovery we can kick in with a chemo therapy. Best case scenario, I get the large pelvic tumor out (including a small tumor near my liver and checking out a suspicious growth in my right kidney) and get the rib tumor out then I will NED for a long time. Worst case scenario..... I don't really want to go there.
Given that chemo therapies response rates are far from stellar for LMS, surgery seems like the best option.
On top of all this, since Friday I have had severe gasto-intestinal pain. I am not sure if it's cancer related or a bout of gut flair up due to other factors, ouch.
Here comes the good news...On Friday morning Berkwood-Hedge had a walkathon for LMS research and they raised over $3000! I was so honored! I had a blast walking with the kids and staff. The kids were so proud that they could help raise money and excitedly shared with me how much they had pledged. It was a really fun morning.
That's all for now.
Becca
This past week I have met with two surgeons at UCSF, an abdominal surgeon and the thoracic surgeon and the Dr. Jahan the medical oncologist. It's not so clear cut what my next step should be. There're some chemo drugs that I can consider and there's surgery. The two surgeons both said that surgery is "feasible" but had some concerns about the disease coming back while recovering from surgery, precluding me from doing a systemic treatment while recovering. That is one perspective. As difficult as surgery is and the fact that we don't know what may or may not crop up, it's near 100% it will get the disease out of my pelvis and abdomen. The plan is that after I recover from the pelvic surgery I would have the surgery to get the rib tumor out. After all that, then , IF NECESSARY, after recovery we can kick in with a chemo therapy. Best case scenario, I get the large pelvic tumor out (including a small tumor near my liver and checking out a suspicious growth in my right kidney) and get the rib tumor out then I will NED for a long time. Worst case scenario..... I don't really want to go there.
Given that chemo therapies response rates are far from stellar for LMS, surgery seems like the best option.
On top of all this, since Friday I have had severe gasto-intestinal pain. I am not sure if it's cancer related or a bout of gut flair up due to other factors, ouch.
Here comes the good news...On Friday morning Berkwood-Hedge had a walkathon for LMS research and they raised over $3000! I was so honored! I had a blast walking with the kids and staff. The kids were so proud that they could help raise money and excitedly shared with me how much they had pledged. It was a really fun morning.
That's all for now.
Becca
Sunday, April 11, 2010
Count down to scan
There is just over a week until my next scan and the anxiety, or what we call scanxiety, has kicked in. Every scan is" important" but this one has the extra punch of being the first one since starting chemo (gemzar) in February. I have been feeling optimistic, mostly, and in my gut feeling is that the scan will be good, however my mind won't be at rest until I have the scan report in my hands.
I continue to do Qi Gong everyday, take my supplements and have now added a homeopathic remedy. Last month MD Andersen (one of the biggest cancer centers in the U.S.) published a study that found that homeopathy to be as effective as chemo therapy in breast cancer. That aside, the doctor I am consulting with has been working with cancer patients for many years and obviously believes that homeopathy plays a role in the treatment of cancer.
The art auction at Vintage Berkeley two weeks ago was a fun and successful. Thanks to the many artists and the crew of folks that took on the many tasks to make the show possible, and thanks to everyone who attended. Over 2/3 of the art sold with just a few pieces for sale still. We netted about $3000, not a huge amount but nonetheless money that will go directly to Matt Van de Rijn's research at Stanford. Speaking of fundraisers, once again Berkwood Hedge School is stepping up to bat for LMS research with a all school walkathon on April 23rd. Once again I am honored and thrilled and deeply touched at the continuous support from the Berkwood Hedge staff and community.
Keep your fingers crossed!
keep you posted
Becca
I continue to do Qi Gong everyday, take my supplements and have now added a homeopathic remedy. Last month MD Andersen (one of the biggest cancer centers in the U.S.) published a study that found that homeopathy to be as effective as chemo therapy in breast cancer. That aside, the doctor I am consulting with has been working with cancer patients for many years and obviously believes that homeopathy plays a role in the treatment of cancer.
The art auction at Vintage Berkeley two weeks ago was a fun and successful. Thanks to the many artists and the crew of folks that took on the many tasks to make the show possible, and thanks to everyone who attended. Over 2/3 of the art sold with just a few pieces for sale still. We netted about $3000, not a huge amount but nonetheless money that will go directly to Matt Van de Rijn's research at Stanford. Speaking of fundraisers, once again Berkwood Hedge School is stepping up to bat for LMS research with a all school walkathon on April 23rd. Once again I am honored and thrilled and deeply touched at the continuous support from the Berkwood Hedge staff and community.
Keep your fingers crossed!
keep you posted
Becca
Thursday, March 11, 2010
feeling good
Today after waiting at the cancer center for nearly 2 hours I was told that my white blood count (the immune system) was too low to administer the chemotherapy, arghhhh. I had a mini freak out "if I can't get the treatment today the tumors won't shrink, blah, blah, blah) I immediately started listening to my Qi Gong on my ipod and began feeling calmer, then I talked with Carla, my friend and acupuncturist, she assured me that this does happen and it will be okay. My doctor also was pretty calm about it, so things are good.
Mexico was WONDERFUL and I came back feeling very relaxed and nurtured. More than once (actually more times than I like to admit) Maryclare had to talk me down when my mind started to spin about these new tumors, so in reality about 50% I was a walking worry wort and the other 50% of the time I was able to enjoy the yoga, the beach, and the great group of women at the retreat.
The following Monday I had an appointment at UCSF with Dr. Jahan to check in and to discuss plan "B" if the gemzar doesn't work (I don't mean to sound cocky, but i think it's working) and he checked out my abdominal/rib swelling that I was convinced was cancer gone wild in my plural cavity (more like my mind gone wild thinking about my plural cavity). But alas, it's most likely a hernia. Dodged that bullet!
The art benefit on March 27th is in full swing and we now have so much art we will be hard pressed to find space to hang it all, which is a good thing. The variety is astounding! I am overwhelmed by the generosity of the artists.
That's all for now
Becca
Mexico was WONDERFUL and I came back feeling very relaxed and nurtured. More than once (actually more times than I like to admit) Maryclare had to talk me down when my mind started to spin about these new tumors, so in reality about 50% I was a walking worry wort and the other 50% of the time I was able to enjoy the yoga, the beach, and the great group of women at the retreat.
The following Monday I had an appointment at UCSF with Dr. Jahan to check in and to discuss plan "B" if the gemzar doesn't work (I don't mean to sound cocky, but i think it's working) and he checked out my abdominal/rib swelling that I was convinced was cancer gone wild in my plural cavity (more like my mind gone wild thinking about my plural cavity). But alas, it's most likely a hernia. Dodged that bullet!
The art benefit on March 27th is in full swing and we now have so much art we will be hard pressed to find space to hang it all, which is a good thing. The variety is astounding! I am overwhelmed by the generosity of the artists.
That's all for now
Becca
Thursday, February 18, 2010
back at it
On Tuesday I talked with Dr. Sabbatini at MSKCC and he strongly suggested that I go back on the Gamzar, so that's what I will do, at least for the next 6 weeks. He feels that because it worked so well before that there's a good chance that I will respond again... keeping my fingers crossed! It's my habit to jump to "plan B" just to be prepared for the "what ifs" I am trying not to indulge in this too much, because the Gemzar going to work, right?! But nonetheless, I will do my homework for the "plan B, C and D"
Overall it's been a tough week, the emotional roller coster at it's most extreme, from feeling like this is the unthinkable slippery slope, to the Gemzar is going to work and that if it doesn't I have many unused treatment options. One of the things that has really helped me out this past week is my Qi Gong practice which I have really stepped up since last Wednesday, it's so empowering, it gives me a strong connection to the power of the mind in relation to health and healing.
Despite, all this hell I got the green light to go on a yoga retreat in Mexico! I am so looking forward to it, it's going to be wonderful to be near the ocean and doing yoga with Gay White, my favorite yoga teacher and friend, and hanging with my dear friend Maryclare. I leave on Saturday.
Best,
Becca
Overall it's been a tough week, the emotional roller coster at it's most extreme, from feeling like this is the unthinkable slippery slope, to the Gemzar is going to work and that if it doesn't I have many unused treatment options. One of the things that has really helped me out this past week is my Qi Gong practice which I have really stepped up since last Wednesday, it's so empowering, it gives me a strong connection to the power of the mind in relation to health and healing.
Despite, all this hell I got the green light to go on a yoga retreat in Mexico! I am so looking forward to it, it's going to be wonderful to be near the ocean and doing yoga with Gay White, my favorite yoga teacher and friend, and hanging with my dear friend Maryclare. I leave on Saturday.
Best,
Becca
Friday, February 12, 2010
big shock!
On Wednesday I had a CT scan and got news that blew my socks off, just 6 weeks after my good PET scan, I have a 6 cm tumor low in my abdomen and an other slightly farther up that measures 5.5 cms. It' unclear if the two are connected. I have started back on the Gemzar for the meanwhile and am waiting for Dr. Sabbatini at Memorial Sloan Kettering to get back to me with other treatment options. Dr. Tap at UCLA has suggested a combination of two drugs both pills, one is Temodor and the other is called Sorafenib. From my conversation I had with Dr. Sabbatini in late December I think he will also suggest this protocol. I am trying to stay calm, not always easy to do.
I am looking hard for the "good" news and the silver lining, digging digging...... Okay, so nothing is attached to a major organ, not yet any way, and my lungs are clear, with the exception of a small density at the base of the left lung, not sure what it is. There is a bit of uncertainty about the left rib area. So really the only major issue is the abdomen. I am in a scary place right now, but I keep on reminding myself that I have been in these predicaments before and I have gotten through. Way back when, over two years ago, I did have 40 nodules in my lungs, that was BAD but the Gemzar and Taxatere took care of that. Last year, more tumors and again surgery and Gemzar did it's magic. So, yes the good news is my body responds really well the chemotherapy drugs, and if the old chemo protocol doesn't do it I have other options.
On a happier note, me and few dedicated friends and family members, including Maryclare, my mom, Deanne, and Kalen, are organizing an art show and a silent auction at Vintage Berkeley Wines on College Ave. The auction is on March 27th at 7:00. We have collected many pieces of beautiful art from local artist and we plan on having a great party with terrific wine and yummy hors d'oeuvers. There will be an e-flyer soon with all the all the details.
In this time of stress it's really nice to be working this fundraiser, such a good distraction, toward a cause so important to me and others with Leiomyosarcoma.
That's all for now,
Becca
I am looking hard for the "good" news and the silver lining, digging digging...... Okay, so nothing is attached to a major organ, not yet any way, and my lungs are clear, with the exception of a small density at the base of the left lung, not sure what it is. There is a bit of uncertainty about the left rib area. So really the only major issue is the abdomen. I am in a scary place right now, but I keep on reminding myself that I have been in these predicaments before and I have gotten through. Way back when, over two years ago, I did have 40 nodules in my lungs, that was BAD but the Gemzar and Taxatere took care of that. Last year, more tumors and again surgery and Gemzar did it's magic. So, yes the good news is my body responds really well the chemotherapy drugs, and if the old chemo protocol doesn't do it I have other options.
On a happier note, me and few dedicated friends and family members, including Maryclare, my mom, Deanne, and Kalen, are organizing an art show and a silent auction at Vintage Berkeley Wines on College Ave. The auction is on March 27th at 7:00. We have collected many pieces of beautiful art from local artist and we plan on having a great party with terrific wine and yummy hors d'oeuvers. There will be an e-flyer soon with all the all the details.
In this time of stress it's really nice to be working this fundraiser, such a good distraction, toward a cause so important to me and others with Leiomyosarcoma.
That's all for now,
Becca
Monday, January 25, 2010
money finally gets to Stanford
At long last the money we raised at the October fundraiser is in the hands of Matt van de Riji at Stanford. In the end we were able to give him and his team of researchers over $16,000! What a fantastic feeling! He was so thrilled with the gift and was blown away that we were able to raise so much in a single night. All the money is going to his research.
Matt and his colleague, Rob, gave me, Sharon and Susie Siegal (an other LMSer) a tour of the lab; we saw actual LMS (Lieomyosarcoma) tumor tissue in paraffin blocks (how it's stored when removed from the body) and we even looked at the tissue samples through microscopes. It's quite amazing how complex this kind of research is and it's all very interesting and amazing, but honestly so much of it is over my head, I am just happy that there're people who can wrap their minds around this stuff.
In layman's terms I am going to try to explain what Matt and his colleagues are up to with the research. Mind you, in a nutshell. Thanks to Sharon and others, Matt has many LMS tissues samples, 70, I think, and he was able to look at these samples and divide them into three subtypes of LMS in these three subtypes he found many targets, most notably a protein called CSF1. Targets are very important because if a cell has targets these targets can be potentially blocked with drugs. What is so exciting about Matt's research is that he not only found many target (his finding were confirmed by two other independent studies elsewhere) in these three subtypes of LMS, but he believes that there are existing drugs that will act as blockers, thus in essence starving the cancer cells from one of the foods that makes it grow.
I asked Matt what he would use our donation for and he said he wants to use it to move forward with the mouse xenograft studies, meaning he will injecting 8 mice with LMS tumor cells, 4 of them are the control group, no intervention, the other four will be treated with a drugs that he is hoping will stop the tumors. Mice studies are the precursor to human clinical trials, the whole process is slow, but Matt thinks that within two years his research could move into to a clinical trial.
I have been cursed with this horrible disease, in no way can I view myself as lucky, no one with LMS, or any cancer, can call themselves lucky, but meeting Matt and learning about the work he is doing I did feel lucky, actually it's much more than that, I have a deep gratitude ( a huge understatement) that this incredibly smart and devoted scientist is tirelessly working on the rare and obscure cancer I have. I speak for all of us living with LMS.
Be well,
Becca
Matt and his colleague, Rob, gave me, Sharon and Susie Siegal (an other LMSer) a tour of the lab; we saw actual LMS (Lieomyosarcoma) tumor tissue in paraffin blocks (how it's stored when removed from the body) and we even looked at the tissue samples through microscopes. It's quite amazing how complex this kind of research is and it's all very interesting and amazing, but honestly so much of it is over my head, I am just happy that there're people who can wrap their minds around this stuff.
In layman's terms I am going to try to explain what Matt and his colleagues are up to with the research. Mind you, in a nutshell. Thanks to Sharon and others, Matt has many LMS tissues samples, 70, I think, and he was able to look at these samples and divide them into three subtypes of LMS in these three subtypes he found many targets, most notably a protein called CSF1. Targets are very important because if a cell has targets these targets can be potentially blocked with drugs. What is so exciting about Matt's research is that he not only found many target (his finding were confirmed by two other independent studies elsewhere) in these three subtypes of LMS, but he believes that there are existing drugs that will act as blockers, thus in essence starving the cancer cells from one of the foods that makes it grow.
I asked Matt what he would use our donation for and he said he wants to use it to move forward with the mouse xenograft studies, meaning he will injecting 8 mice with LMS tumor cells, 4 of them are the control group, no intervention, the other four will be treated with a drugs that he is hoping will stop the tumors. Mice studies are the precursor to human clinical trials, the whole process is slow, but Matt thinks that within two years his research could move into to a clinical trial.
I have been cursed with this horrible disease, in no way can I view myself as lucky, no one with LMS, or any cancer, can call themselves lucky, but meeting Matt and learning about the work he is doing I did feel lucky, actually it's much more than that, I have a deep gratitude ( a huge understatement) that this incredibly smart and devoted scientist is tirelessly working on the rare and obscure cancer I have. I speak for all of us living with LMS.
Be well,
Becca
Monday, January 11, 2010
checking in after a long time
Hi all,
I am happy to report that my latest scan, December 23rd, was clear, however there's something lighting up on the pet scan in the 7th rib, front and back, but the doctors feel it is related to the VATS (lung) surgery last year. I am off the gemzar since the beginning of November. On the health front things are good.
Over winter break we visited Boston for a few days, then went on to Vermont to visit my friend Sophie and her husband Matt. They live in an amazing co-housing community in north western Vermont. We had such a fun and relaxing and time. My brother Norman and his girlfriend Lauryn came from NYC to join us for a few days which was wonderful. We helped sophie make cheese, we made something like 260 pounds which will be marketed in nine months. The cheese is an aged cheese which tastes like parmesan, really yummy. Sophie and Matt's younger son Casey is just a bit older than Abby and they spent countless hours playing inside soccer, basketball, and sledding in the fresh snow just a few short steps from the house. I honestly can remember such a relaxing vacation. After 5 days in Vermont I went on to NYC with Norman and Lauryn and engaged in all the big city pleasures; museums, food and people watching. My last night there we went to a club which was just a few blocks from Norman's apartment, go figure, to see an old friend Steve's band play. Steve hasn't see this friend in almost 20 years, so it was fun to say hello for him.
On December 16th I had a procedure called a thoroplasty, I think this is how you spell it, probably, not though, to get my voice back to what it was before the vocal cord nerve was damaged during the aforementioned VATS surgery. All along I was thinking that this was a simple undertaking, given that I have so many major surgeries, I was going in with the idea that it was no big deal, and it wasn't really, but apparently, this type of surgery is very delicate and took 3.5 hours, holly cow! I was on some major "twilight" drugs with allowed me to be awake but not really present. The surgery involved pushing the damaged left vocal cord toward the right, and to get the placement just right I was asked to speak during the procedure so they could test the quality of my voice. My voice works really well and for the first time in nearly a year I don't have to strain to talk, yippi
best,
Becca
I am happy to report that my latest scan, December 23rd, was clear, however there's something lighting up on the pet scan in the 7th rib, front and back, but the doctors feel it is related to the VATS (lung) surgery last year. I am off the gemzar since the beginning of November. On the health front things are good.
Over winter break we visited Boston for a few days, then went on to Vermont to visit my friend Sophie and her husband Matt. They live in an amazing co-housing community in north western Vermont. We had such a fun and relaxing and time. My brother Norman and his girlfriend Lauryn came from NYC to join us for a few days which was wonderful. We helped sophie make cheese, we made something like 260 pounds which will be marketed in nine months. The cheese is an aged cheese which tastes like parmesan, really yummy. Sophie and Matt's younger son Casey is just a bit older than Abby and they spent countless hours playing inside soccer, basketball, and sledding in the fresh snow just a few short steps from the house. I honestly can remember such a relaxing vacation. After 5 days in Vermont I went on to NYC with Norman and Lauryn and engaged in all the big city pleasures; museums, food and people watching. My last night there we went to a club which was just a few blocks from Norman's apartment, go figure, to see an old friend Steve's band play. Steve hasn't see this friend in almost 20 years, so it was fun to say hello for him.
On December 16th I had a procedure called a thoroplasty, I think this is how you spell it, probably, not though, to get my voice back to what it was before the vocal cord nerve was damaged during the aforementioned VATS surgery. All along I was thinking that this was a simple undertaking, given that I have so many major surgeries, I was going in with the idea that it was no big deal, and it wasn't really, but apparently, this type of surgery is very delicate and took 3.5 hours, holly cow! I was on some major "twilight" drugs with allowed me to be awake but not really present. The surgery involved pushing the damaged left vocal cord toward the right, and to get the placement just right I was asked to speak during the procedure so they could test the quality of my voice. My voice works really well and for the first time in nearly a year I don't have to strain to talk, yippi
best,
Becca
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