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

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

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.

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.

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

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.

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

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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