Today I did four things. Went for another consult with Misha and Elisa, met with a social worker, Susan Chen, at Kaiser for half an hour, chatted with Tong for a while at the "Sugar Bowl", went to the weekly support group at UCSF, and meditated at sangha night. Pooped!
The support group was GREAT. Such nice people. The consult with Misha was also great. I may write up something about both later. Misha did emphasize anti-inflammatory foods, especially no or very little sugar. Stevia is ok. Ack. For a couple of months I didn't eat anything with added sugar in it, and was mostly not tempted by such things. This may be difficult at this point, but I will try.
Followup email from Dr. T about taking taking pamidronate:
"I gave you a call but could not reach you. You do not have extensive bony involvement (based on the CT and bone scan). It's reasonable to wait until the PET scan to determine the course of action. Generally, pamidronate has been used in patient's with solid tumors (lung, breast etc.) that have bone involvement, in an attempt to decrease the number of "skeletal related events" (i.e. fractures). Although there is no way of quantifying your risk, at present it does not appear to be high. Although there are many potential side effects (as with any medication) the most common ones associated with pamidronate are low calcium (hypocalcemia) and kidney dysfunction. Let me know if you have any questions. I have hospital rounds this week so there may be a delay in my replies to your messages."
Evolving travel plans:
I searched high and low for a retreat in mid-April and found the Heart Sutra retreat in Wales, which got nixed because it is a men's retreat! And the retreat at Joshua Tree got nixed because I couldn't get a private room. Then I was thinking about visiting Montana and doing a solitary...nothing seemed right, until the land became available. So I think what I will do is go on solitary retreat there for two weeks, then head down to my dad's for about a week, then do a little road trip maybe to Utah/Nevada for a week or so. I have a follow up exam with Dr. Littel on May 25. Misha also suggested getting a second opinion on the next phase of treatment...
Tomorrow, a follow-up exam with Dr. Nag down in Santa Clara, reiki with Tania, teaching the drop in class, then skype call with Kathy.
"I gave you a call but could not reach you. You do not have extensive bony involvement (based on the CT and bone scan). It's reasonable to wait until the PET scan to determine the course of action. Generally, pamidronate has been used in patient's with solid tumors (lung, breast etc.) that have bone involvement, in an attempt to decrease the number of "skeletal related events" (i.e. fractures). Although there is no way of quantifying your risk, at present it does not appear to be high. Although there are many potential side effects (as with any medication) the most common ones associated with pamidronate are low calcium (hypocalcemia) and kidney dysfunction. Let me know if you have any questions. I have hospital rounds this week so there may be a delay in my replies to your messages."
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| typical san franciscans |
I searched high and low for a retreat in mid-April and found the Heart Sutra retreat in Wales, which got nixed because it is a men's retreat! And the retreat at Joshua Tree got nixed because I couldn't get a private room. Then I was thinking about visiting Montana and doing a solitary...nothing seemed right, until the land became available. So I think what I will do is go on solitary retreat there for two weeks, then head down to my dad's for about a week, then do a little road trip maybe to Utah/Nevada for a week or so. I have a follow up exam with Dr. Littel on May 25. Misha also suggested getting a second opinion on the next phase of treatment...
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