Thursday, August 20, 2009

quick updates

Very nice to have the relatives here. Some notes about Thursday.

1. Dr. Tonnesen offered an argument for not getting an MRI immediately, which went something like this: "If you do get the the MRI done, will you not go to NCI? If you don't get the MRI done, will you not go to NCI?" The point he was making is that, in terms of our actions on behalf of Mom, an MRI at this juncture wouldn't add anything to our plan of action. The only function such an MRI would serve would be to satisfy our curiosity about the tumor's progress. This is true, and it's also true that whatever intelligence we gathered from an immediate MRI would not be actionable; a plan is already in motion, and can't be sped up. One way or another, Mom would still have to wait for NCI to do its own baseline MRI scans on Mom.

Dr. Tonnesen also said that NCI has very advanced facilities, but that its primary purpose is research; helping Mom was a secondary purpose. Was this his way of warning us against NCI and Dr. Fine?

We asked the doctor about whether we could continue to give Mom Temodar during the three-week waiting period before her scan at NCI (September 11). Dr. Tonnesen said he didn't know NCI's protocol, but he leaned toward the view that they would probably postpone any MRI in order to allow the Temodar to flush out of Mom's system. Also, Temodar presented its own risks (lowered blood count, etc.), such that continued dosage could be potentially harmful for Mom. We would have to call NCI directly to find out what they thought about giving Mom Temodar between now and September 11.

2. Dad called NCI and quickly learned that they did not want Mom on Temodar. We are, at this point, accepting the idea of not having Mom undergo another scan. Dr. Tonnesen's opinion is that the tumor won't show significant growth during the coming three weeks, assuming the radiation has beaten it down somewhat. Personally, I don't trust this opinion, given the massive growth that occurred during the eight-week period when Mom was off radiation.

3. Dad scheduled an appointment with Dr. Royfe, who has been Mom's primary care physician for years. Dr. Royfe hasn't seen Mom since before this whole mess happened, so this will be the first time he looks Mom over. Mom will see the doc tomorrow morning at 10AM. Later in the day, she'll have her final radiotherapy session. It feels as if some sort of ineffable, symbolic line has been crossed.

4. Mom had a nice-- if humid-- walk in the park. My uncle John and my cousin Jihae held her hands as we strolled.

5. Mom was somewhat talkative throughout the day, but not much. In the evening, we all spent a lot of time watching Korean dramas with her.

6. Sean came over for a bit, staying with Mom and talking with the relatives. He had a severe sunburn on both his legs, apparently from helping someone move the previous day. I've never seen Sean so badly burned.

7. The other day, correspondent "LM" wrote the following, which is an example of the "good attitude" I referred to earlier:

Good luck. My prayers are with you and your mom. Don't ever give up even if a doctor tells you it is hopeless. Keep fighting even if it seems like you are fighting a losing battle. It's a little like the Alamo. You know you are probably going to lose the battle sooner or later, but don't ever [wave] the white flag. All of those doctor app'ts, forms to fill out, prescriptions to be filled, and radiation and chemotherapy sessions to attend are tiring (for EVERYONE). But I've only got one father and you've only got one mother. I look at this time as my opportunity to help my father in a way I've never been able to before and also as a small way of repaying him for all of the loving things he has done for me during the course of my life.

Hang in there.

That's the sort of attitude I'm talking about. You have to acknowledge that this is a losing battle, but such knowledge shouldn't prevent you from doing what you can. The Alamo, indeed.


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