Saturday, November 14, 2009

Newest News

posted by Mary Lello, Saturday, November 14, 2009, 5:15 AM

Jim went for his biweekly Avastin infusion and we saw Dr. Weisburg. We got informed on what she suspects the swelling is that was seen in the MRI 2 weeks ago.

The tumor looks the same, no bigger, no smaller but the edema is all around the tumor. This could be cancer at the very cellular level. This tumor could be sending out tendrils and the swelling is the very first signs of this. All Dr. W. can offer us is to add chemo, CPT-11, in with the Avastin. She would rather have us go back down to Dana Farber and meet with Dr. Wen again and see what other options we might have.

She said that Jim is doing fantastic and has amazed all his doctors. She added "I know this doesn't all feel amazing to either of you, but from the medical stand point, JIm, you are amazing!" she added that Jim is young, very strong physically and if there is anything new out there that is being tested or that Dr. Wen may know about she wants Jim to get it. He's the perfect candidate.

She also wants the steroids increased from 2mg/day to 4mg/day to try and get the swelling down. She believes all the trouble with the speech is this swelling. It was our first small change in his symptoms - always a red flag.

Jim took all this really well. I'm in a bit of a funk. Dr. W. said this is NOT going backwards, it's forging ahead. She said the swelling might be the tumor disrupting the natural flow of spinal fluid in which case DF is the place to go to get a shunt put in to drain this. But I don't think this it what she believes is going on.

It feels like we are going backwards to me. It feels like the cancer is 'coming back' .... though it never really left. It feels like we are going back to Dana Farber in hopes that they can offer us something more. I'm not taking all this real well.

And of course I blame myself - we got lax on the diet because Jim really enjoys a beer and sweet potato fries with his burger at the Tavern. I've stopped the supplements because I can't afford the $800.00/month bill. I've started too many of my prayers with "&$%* YOU!" I know this is all irrational and it's nobody's fault ... but it's still hard not to feel I'm doing something wrong here.

OH, and there's more good news (yes, I'm being sarcastic) I found out that the fabulous offer that our PT office gave to us is actually DOUBLE what I thought it was. Oopsy. So now I have to go to them and tell them I can't afford the 3x/week and will have to cut PT down to 1x/week. A wonderful friend has offered to help me with this so we can go at least 2x/week. I'm still thinking about this offer as it's hard, always, to accept such gifts.(Our insurance will kick in again for this the first of the year, but our plan offers a very small amount of money for all therapies.)

In addition I have learned that one of my sweet NESA Bellas - a woman I went to acupuncture school with (NESA) and whom I have known for 13 years - is at Maine Medical Center now. Her breast cancer has metastasized to her brain and possibly her spinal fluid. She is basically riddled with it now after fighting for 8 years. They offer her more chemo, or to stop it all together in which case she has limited time left.

Can my heart take any more without breaking completely?

Yes, I'm in a funk for sure. BUT I will get in to see my friend on Sunday, I will make the appointment to go to Dana Farber, I will rally and smile and forge ahead because this is my life and there's no running away from it.

I'm not quite ready to start my prayers with "Dear God" though, sorry.

Loving you all back - because all this love is such a gift,


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