cautious optimism

Well, we just arrived home from my MRI and the visit with my oncologist, Dr. Nghiemphu, and social worker, Cheryl, that immediately followed the MRI. (Stopped at the LifeTrail for our daily walk on our way home.) Dr. Nghiemphu came into the room pretty much as soon as we got there to let us know the results of the scan. She was also able to show the scan to Mike right away before stepping away to meet with another patient and then rejoining us for a more thorough conversation regarding next steps. (As many of you may remember, I have never personally seen my scans; I’ve never wanted to have that visual image seared into my brain.)

So, quick takeaways: the swelling in my brain has decreased significantly since my 4/9 scan, meaning that the steroids are doing their job. The tumor itself does not appear to have grown much — if at all — over the past six weeks, although it’s apparently a little difficult to tell exactly what’s going on because of the reduction in swelling. 

Basically, this is as good of news as we could have hoped for. It means that there was a burst of growth following the radiation and chemo treatment, but the tumor now seems to be growing slower than they initially thought and, currently, seems to be controlled by the steroids to some extent.

We have agreed to scan again in six to eight weeks. In the meantime, I’ve been cleared to reduce my steroid dose from 4mg per day to 3mg, which I’m hoping can a) make me feel a little more like myself; b) help slow the muscle atrophy I’m experiencing; and c) help reduce the horrible puffiness and acne on my face.

Avastin continues to be on the table as a treatment option once the pace of tumor growth accelerates. Dr. Nghiemphu continues to predict this will happen in the coming months, but seems to think it could be several more months out than seemed likely after the April scan.

There is so much more to share with you all from this visit, including information about why the Duke polio trial and other clinical trials are not a fit for me at this point. On a more exciting note, I can’t wait to share with you the invigorating conversation we had with Dr. Nghiemphu and Cheryl about some ideas I’ve been mulling over for future research and writing. They were both very enthusiastic to speak with us about a variety of topics related to my own personal cancer journey, and the role of culture in cancer treatment and care, including end-of-life care. (In fact, we finally had to tell them we had to leave; they were both so engrossed in the conversation!) They are also both eager to connect me with others in the field as I seek to learn more about these in preparation for writing more about it. Very excited to share more about this part of the visit in future posts/conversations.

More to come soon, including impressions from UCSF’s tumor board, the members of which will review my scans tomorrow, all being well. We’ll speak with Dr. Taylor early next week when she’s back in town to see if she and the board concur with Dr. Nghiemphu’s assessment and our planned next steps.

Definitely a day of net joy!

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