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Monday, November 28, 2011

Post Thanksgiving

Happy post thanksgiving everyone. Leslie, Gracie and I did something different this year. We got in the car and started driving. We haven't been anywhere since I was diagnosed and thought it'd be nice to get away.  We ended up in Pismo Beach. I don't think I'd been there before. It's beautiful. We got a hotel room at the Spyglass Inn, with a beach view and they allows dogs. We had a non-turkey dinner from the restaurant and it was great.  I'm feeling good and it was awesome to get away and not think about cancer for a couple of days.  We got home Friday night and I was basically pooped out the rest of the weekend. But well worth it.

Today it was chemo. No treanda this week, so the treatment is very short. I go again Thursday and then I have two weeks off. Dr Phan is letting me not do labs this week...so no worries about the results.  Tomorrow we go back to Cedars to discuss more about harvesting my cell stems. At the very least, it would be good to freeze those suckers.  We'll see what they say. If possible I want to do it during week two of my 2 week break.  I don't want to delay my normal chemo cycle.

Also tomorrow at work is a meeting that I scheduled and really want to be a part of. If we can get out of the doctor appointment on time, I might be able to make it back to the office in time for the meeting.  Hopefully, timing works.

And that's about it. Continue to feel good and make progress.  We see Berenson in a week or so and that will give me a better idea of my status.

Wednesday, November 23, 2011

Whew

hi Blog,  I'm back. Platelets were up today, so I was able to do chemo.  Been napping since I got home. That stuff knocks me out. Don't call it a comeback.

Busy day at Phan's office, lots of new faces. Watched Battle Los Angeles.

that is all.

Tuesday, November 22, 2011

Remember me?

Hello blog. Yes it's been several days since I last wrote. Not much to say. Did blood work today. Supposed to resume chemo tomorrow...assuming my platelets are back up. Am I nervous and anxious? Why yes I am. I can't miss another treatment. Seems like that would give the myeloma a chance to rebound. By nature I am an antsy, anxious worrier....partly explaining how myeloma was able to take root to begin with. So I need to think positive thoughts....high platelet count. I am still feeling pretty good. Been working out.

Well blog, that's all I got. I'll fill you in tomorrow after chemo.

Friday, November 18, 2011

Damn platelets

Well, here's a first. Went to chemo today but couldn't do chemo because my platelets are too low. Why are they low? They're low because of chemo. So I have to wait a few days for the count to go back up. Argh. I hate waiting and I hate missing treatment. Funny that yesterday, we saw the cancer coach and she reminded me that this is a curvy road and to stay focused on the big picture, not little twists and turns. And just like that, here's a curve that I can't let myself get all bothered by. Breathe.

Anyhow, instead of chemo, we went and saw Jack & Jill, an Adam Sandler movie. We had low expectations but it turned out to be funny.

Monday, November 14, 2011

Representing

Here's a photo from my buddy and bike planning guru, John DiNunzio.  It's from his annual bike camping trip. Next year, I'm there.  Take a close look at the flag. Awesome!

Back to chemo

After two weeks off, I'm back to chemo for the next two weeks. Tuesday and Friday this week. Should get some lab results tomorrow and we'll see how I'm doing during my off periods. Still feeling good.  At work today.

Friday, November 11, 2011

Finally the week is over

Way too many appointments this week.  Today it's capped by a blood transfusion.  I didn't even realize I was low.  Physically I am feeling pretty good.  Mentally though, I'm worn out and grouchy. Way too much conversation this week about my kidneys. Those fucking kidneys.  Saw doc Zoller and she's a downer and got me all worried about the long term condition of the kidneys.  Had a consultation on stem cell transplants, but the problem is the kidneys.  Yes, the cancer is getting better and we've found a treatment that works. That's good. Yes, the kidneys have shown improvement and I've been able to avoid dialysis. But when I get paranoid and worry about the long term prognosis, it bums me out. Dialysis sounds like a real impact on quality of life.

Monday, November 7, 2011

Berenson......check

One appointment down, two to go. Berenson was happy with my progress and recommends we not change a thing in my treatment.

The week ahead

Feeling good, entering week 2 of my break from chemo. Busy week ahead.  Today is Dr Berenson. Tomorrow is a new doctor, Dr Lill, to discuss stem cell options.  Weds is Zoller, shot caller, to see how kidneys are doing. We know the kidneys are improving, so let's see what she has to say.  Oh, and of course blood work today.

At work on Wednesday, there is an early thanksgiving potluck.  I'm making a chorizo/apple stuffing. I love stuffing.

Thursday, November 3, 2011

We have photos!

Here are some pictures from yesterday's permacath removal.  On the larger chest xray, you can see the portacath and permacath working their way to the heart. Trippy!!



Wednesday, November 2, 2011

Perm a Cath out

It took all of two minutes. A local anesthetic and it's gone. And more good news, my latest labs showed my creatinin at 7.08. Last week it was 7.7.  It needs to be around 2, but we're definitely heading in the right direction.  And as I've said before, improving creatinin means improving cancer.

This good stuff was needed because I woke up with a bit of an attitude problem today.  I didn't sleep well, I'm off of chemo this week and next, yet I have appointments and stuff almost every day. It's kind of wearing me down and getting annoying. Getting the permacath out and the positive lab results was the pick me up I needed.

Yesterday we saw Dr Durie, another myeloma specialist. His name is actually used in a myeloma measurement term.  Whereas Berenson isn't a believer in stem cell transplants and feels that meds & chemo can do the trick, Durie is more a believer in stem cell transplants. He's not necessarily an advocate, but he does feel it offers benefits to some patients.  Based on what he saw, I may be  a good candidate for the process.  We had thought that the drug treanda, which is effective, is changing up my dna and making a stem cell transplant not an option.  But it still may be.  We've got an appointment next week with a specialist in the process to discuss if I can or should harvest my own stem cells.

Stem cell transplants is a pretty intense process.  Your body is utterly blasted with chemo, so there are some hazards to the process....but I'm young and healthy (funny to say that) and should be able to tolerate it.  However, we've also come upon a chemo treatment protocol that is working. So would I want to interrupt that to do the stem cells? That's a tough one.  Friday we're meeting with Phan to discuss. Hopefully he can bridge the gap between Berenson and Durie.  Two very different approaches.

Durie

Saw Dr Durie, a myeloma specialist at Cedars Sinai. I'll provide summary later. All good. But just know that right now I'm tired of doctor visits. Tired of being tired. Tired of having cancer. Just venting. I could have it worse and I am slowly improving.

Berenson Oncology Success Rate

 Some reading about my myeloma specialist's success rate. A press release and an article from Targeted Oncology.