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
Saturday, May 15, 2010
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
Subscribe to:
Posts (Atom)
