Thursday, April 19, 2012

Chubby Hermie

Other than the growth of Hermie, the meeting went relatively well. The oncologist listened to our protocol, but as he was nodding, we realized that our protocol doesn't matter. I could have inserted the name of any treatment and he wouldn't have cared. He had already looked at my scans and determined that little Herman had grown. He didn't care about the three other areas which had visibly shrunk. We are incredibly bummed that Herm grew, but the tumor cells are less densely populated, and we're looking into two new institutions for further review. We're also going to contact the researcher who tackles artemisinin to see if he will comment on the scans. We're hoping that he will expand on the typical growth patterns of tumors treated with artemisinin. In reviewing the subject, my family and I recall the possibility of the tumor expanding before it gets smaller. Here's a couple of photos for your review. 

Oct 2011 - Jan 2012 - April 2012

After the MRI, but before the meeting with my oncologist, I went to the records department and had a tech burn a disk of my MRI. We brought all of my previous disks from all of my other MRI's and we reviewed them on my father's laptop so that we wouldn't be blindsided during the appointment. It also makes it easier to figure out any questions we might have. The doctor has no idea that we did that. He never knew that we had already reviewed the scan. I don't think it matters though - he doesn't have to know EVERYTHING.

April 2011 - Oct 2011 - Jan 2012 - April 2012

After the appointment, we mailed off a copy of the scan to our friends who have already beat their cancer, then we headed to my parent's hotel. We pulled up all of the scans, and analyzed to our heart's content. We looked at them with the lights on, with the lights off, from a side angle, from above and below. We zoomed in and we zoomed out. It's important to really go through this stuff with a fine toothed comb. Our oncologist is very busy, he doesn't have the time (only 30 minutes) to review everything, so recently we started conducting our own reviews at home.

My oncologist is not impressed with my protocol, he feels that I still need to start doing radiation. He said that the growth was minimal, but it is still growth. He doesn't care that in the past six months there has been barely any growth, he's concerned about the past year of scans. I understand what he says, but at the same time, all we care about is the past six months - that's the time frame of the artemisinin. I told my oncologist that I'm not ready to give up, that I'm going to do three more months of artemisinin.

Today was exhausting and I need to go relax. We just got home and I need to put my feet up. It's a bummer that Hermie grew, but at least his friends are shrinking. All in all, at least Herms isn't growing exponentially. It could be a lot worse, and I'm grateful. I'm sad that he grew, but I know that this isn't over!

7 comments:

  1. Jess you are going above and beyond and you are doing EXACTLY the right thing. To me, the looks of your scans are good . . . if there is any shrinkage whatsoever (get your mind out of the gutter), how can that be a negative thing? How is that not proof of success in any amount? You are blazing an incredible trail and it is something to be extremely proud of. Not all the rules are written correctly; you clearly know that and are making a stand. For what my opinion is worth to you (considering my lack of knowledge), you've got your answers well within your reach. Don't second guess yourself or let someone discourage you just because they're a doctor. Keep it up!!!! So PROUD!!!

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  2. "So Cal" PattiApril 19, 2012 at 8:08 PM

    I thought that your scans looked good too! To my untrained eye it looks like Hermie is smaller and more transparent and perhaps shifted to the left?! The path that you have chosen, rather than radiation, seems to be having positive results! I say the solution lies in the treatment choices that you are following- keep moving forward as we all cheer you on!!!

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  3. Jess, I also thought the scans looked good. You are an inspiration, your strength and determination to make the right decisions for you.

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  4. Jess,
    The fact that there has been minimal growth and the cells are less densely packed is HUGE. Keep focusing on the last 6 months. What you are doing is worth it-and working! Keep it up.

    -Erin

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  5. Jess, ditto to all the above. xo Susea & Gene

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  6. I agree. The past six months speaks more loudly than the past year. I believe you're moving in the right direction. Keep going!

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  7. I too thought the scans actually look better when seen over time. And you are definitely right - the last six months IS what matters to you. I hate that sometimes some professionals in the medical profession don't want to acknowledge what might have helped unless it's something that they themselves said would work. Keep on fighting and keep on dreaming. After all, life is all about hopes and dreams and while we have to make sure to live in the now, thinking ahead a little is what gets us through sometimes too. Hugs to you and your family.

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