An email from Ken

Today has been a hard day.

We found out today that the tumors have spread significantly throughout Pam's body. The scans (PET and CT) showed her literally riddled with new tumors. There was no discussion of the number of new tumors, and based on the pictures I'm guessing that's because there are so many.

We asked the doc if based upon his experience he could give us any "timeline" for what to expect, and he said he did not know, but that because Pam's systems looked good for now (heart, lungs etc.) that he didn't foresee anything "imminent."

The oncologist is stopping the current drug Sutent, and now opting for a more "traditional" chemotherapy infusion called CAV. He said it will be three drugs taken through infusion (IV) once every three to four weeks and if they have any benefit probably for the rest of Pam's life. Possible side effects include the usual suspects - hair loss, nausea, fatigue, weight loss, among others. Based on Pam's research with pheos, it looks like this type of chemo has a 50-50 chance of slowing the tumors down. Time will tell.

Pam's blood pressure is high, so she will also be starting a new "alpha blocker" called dibenzylene (phenoxybenzamine) - which we have experience with . . . it makes her groggy, sleepy and a little out of it. It literally blocks her brains receptors to the hormones (adrenaline) that the tumors are creating so that the brain won't elevate the blood pressure . . . I think something like that anyway. I hope our doctor friends either clarify or forgive the innaccuracies.

Despite Pam's blood and urine chemistry having been off the charts showing tumor activity, we weren't prepared for the extent of the spread. When I first saw the picture with so many demarcations my heart dropped . . . it was startling. All I could think was, "Oh my God."

Our family is grappling with the meaning of all this . . . as I'm sure you are too. While we have full faith in our USCD oncologist, we may also try a second look from the Mayo Clinic endocrinologist Dr. Young who we've kept in the loop. He has been so kind to us over the years offering his insight and encouragement from Minnesota. We may also seek advice on any other alternatives as they arise. Pam is heavily involved in some pheo support boards that also may offer insight.

Our 18 year old daughter Kassy may have summed it up best through her tears observing that, "This is not fair." Our 8 year old son told Pam tonight, "I never want to lose you, Mommy."

What's amazing, is that Pam feels great. She is not in any physical pain or discomfort right now. So we are thankful for that. And we will take one day at a time.

If you have it in you, please say a quick prayer for Pam. Offer her a smile, a note or a well wish. We have certainly been lifted up by so many of your thoughts and prayers in the past, our family could certainly use some more of them. So thank you in advance for all your love. We certainly love all of you.

We are firmly placing this in God's hands. Love you all, Ken.