Saturday, February 25, 2012

Scan Results and What's Coming Next

The scan news is pretty good overall. My liver and lungs remain clear, which is so very important. I have a new lytic lesion on my T-9 Vertebrae (which explains why my back has been hurting of late, but how I was hoping this was just garden variety back pain!). But most significantly, I have a new brain lesion, in the right posterior lobe. It is still small, 5mm x 7mm or so. So, the question is, do we watch it and see what it does, or do we get it out of there right away.

Complicating the matter is the fact that I have Blue Shield and UCLA and Blue Shield have fallen out of contract (as I mentioned in another post). I have one treatment left with my current oncologist as my continuity of care runs out on March 31st. They have been clear that these issues will not be resolved within that time, if ever, so I need to find a new treatment facility.

Dr. Selch, my radiation oncologist, is one of the very best doctors in the world at treating brain metastases stereotactically (one single very targeted and very strong dose of radiation) which would mean no cranial surgery for me. UCLA in general is the pioneer of this stereotactic radiosurgical procedure, and if we are going to be removing this bugger, I want it done by Dr. Selch before I go to someone new. I know there are many excellent doctors in LA County, but I feel so comfortable with the ones I have, especially where my brain is concerned, that I am going to squeeze all I can before I have to move on.

So, I saw my radiation oncologist and my neurosurgeon yesterday and both are willing to push this through within my time limits and definitely recommend that we follow the path of immediate removal. They will be starting with another MRI, this one sliced ultra thin to 3mm. They warned me that when they slice that small they may find another lesion or two in which case they will take those out too.

I can't say I am surprised to learn I have a new brain lesion because, if I am like 99% of people with brain mets, they are likely to keep popping up every few months and my life will become like a giant game of whack-a-mole. I can say, though, that I loved these few blissful months of not knowing and just hoping that I would get a completely clear scan.

Again, this was not a bad scan. What is there is completely manageable and not currently life threatening. Nothing is out of control right now. It just means I have more treatment, sooner than I thought. But it is my understanding that stereotactic brain radiation has very few side effects and I shouldn't go through anything like I did with the WBR. Don't know yet what role Decadron, the evil steroid, will play in this but that will have a lot to with how I view the overall experience, I'm sure.

In the meantime, does anyone know of an outstanding medical oncologist at Cedars-Sinai? I already have a referral for a radiation oncologist, so we are getting there!

Sunday, February 12, 2012

Almost Got Me

To my complete delight, I am back to cantoring. A light schedule to begin with as I get my sea legs back, but ramping up to normal as we approach Lent and Easter. I honestly did not know if I would ever sing again, and I cannot describe my joy at once again being able to "pray twice" as is so often said of church singing.

When I sing, I don't just hear the words as I do when they are spoken--I FEEL them. It's hard to explain, but when I am singing at mass is when I feel closest to God, and I really, really missed that.

For a few months after my brain radiation I had a significant general tremor that seriously affected my voice. I thought after awhile that it was going to be permanent, but as the Decadron cleared my system the tremor slowly left me and I found myself able to sing more or less as before, but with a little less breath control thanks to the bout of pneumonia, I suppose.

So, the reason I am telling you all this? When I am singing, I feel almost as if I am having a conversation with God. Some songs are written from his voice and some from ours. When I am singing one from his voice, I concentrate on what he is telling me that day, and when I am singing to him, I am thinking of exactly what I am saying to him, even though the words are someone else's, technically. It is a near perfect form of prayer for me.

Today we sang a song at Communion called "Our Blessing Cup" by Bob Hurd. Anyone who regularly attends mass anywhere should know this one. Anyway, I have sung this song a hundred times but never really focused on verse four, probably because we don't always get to that verse, and my perspective on life is quite different now so it wouldn't have meant as much to me before. All I know is that when we were practicing on Thursday I could not make it through the verse without crying. Happily, I made it through just fine at mass today because I had time to prepare myself, but I was worried it was gonna "get me"!

It was as if I were in a private conversation with God in front of the whole congregation:

Verse 4: "For you have heard my voice, for you have heard my pleading. Though death surrounded me, you heard and answered me."

A brief line, but it made quite an intense connection for me, because I believe every single word.

Wednesday, February 01, 2012

The Blue Shield Blues

Has anyone heard of the break between Blue Shield and UCLA? Blue Shield members are no longer covered at UCLA due to a breakdown in contract negotiations.

Guess who has Blue Shield? That's right, me.

Thank goodness that, after many phone calls and frightening moments, along with a week's delay in my treatment, Blue Shield has granted me a Continuity of Care exception and will continue to allow my treatments through Dr. Glaspy until the 31st of March, by which time they expect I will find a new doctor and treating facility.


I have been with Dr. Glaspy and Denise (NP) and their wonderful team of chemo nurses since the beginning and he has done an excellent job of keeping me alive. I don't want another doctor. I don't want another treatment facility. What I want is for Blue Shield and UCLA to kiss and make up before I have to change.

As you all know, I have a Omaya Reservoir in my brain that many doctors do not have any experience with at all. There is no place like UCLA for cutting edge clinical trials. All my records are there. My Radiation Oncologist, who is one of the very best at stereotactically zapping tumors that dare to return after whole brain radiation and stretching out the amount of time patients with brain mets live, is there. I don't want to go, I don't! I know so many doctors and nurses there that I can't go to the cafeteria without seeing someone I know! (Scary, but true). I feel like UCLA is a strange kind of home away from home and I hate that I am being forced to look elsewhere. I hold on to the hope that they will settle this before the end of March, but neither side seems to think this is going to happen when questioned.

We are lucky enough to live in an area with lots of good cancer treatment centers and there are many good oncologists around. I just don't want to find one of them. I am happy where I am!

Blue Shield has given us excellent coverage during all of this and I have been so fortunate to have had the coverage I have had. Is it greedy to say that I want more? Well, I do.

But, like I always tell my kids, "You can't always get what you want..."