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

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

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

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.

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

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

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