Just a quick update. The CyberKnife radiation procedure went well last night. They gave us a nice tour of the facility and a great explanation of the technology. I even observed the last 1/3 of the process, which was very interesting. Bobby had a little headache last night, and felt a little tired this morning, but nothing bad.
He will go back under the CyberKnife again this afternoon to finish the treatment. So far, so good.
Juli
Back in the Waiting Room
After our appointment with Dr. Nguyen (pronounced "Winn"), the Radiation Oncologist, we had the impression things were going to be fast tracked. Last Thursday, Bobby was fitted for a mask, had a CT Scan "Sim", and another Brain MRI, all in preparation for a 2-3 day planning phase. Then we waited. We finally got the call yesterday afternoon that the CyberKnife is scheduled for today at 5:00 pm. The CyberKnife is a highly concentrated beam of radiation, specifically targeting the tumor "bed," a the shell-like remains where the tumor was previously sitting. This procedure will reduce the odds of a recurrence in the same location from 40% to 5-10%.
Additionally, we are on track to start a new IV treatment called Timsirolimus, or Torisel, after an appointment next Wednesday with Dr Keller. The plan is to do Torisel weekly for 8 weeks, at which time we'll do scans to measure progress. If there's regression, we'll keep doing it. If there's progression, we will stop the Torisel for 4 weeks, and proceed to Bethseda for the NCI Clinical Trial. He's ineligible for the trial for 3 months after radiation, and 1 month after any systemic treatment. We are comfortable with this plan, and relieved to finally have a longer range plan.
The Concerns:
1. The laundry list of potential side effects from radiation in the left temporal lobe include nasty things like dependence on steroids due to swelling, permanent cognitive and speech issues, and even violent tendencies. Lovely.
2. Torisel side effects include fatigue, mouth sores, hives, itching, swelling. Been there, done that.
On the positive side, we were extremely blessed today by receiving over 50 text messages from some of the pledges in Michaels fraternity. It's Initiation Week, so I imagine the pledges are swamped with lots of unpleasant tasks, but this one was optional. Just a sampling:
Now that's some fraternity hazing I could actually support. Thank you to all the fine young men of the Sigma Phi Epsilon fraternity at the University of Oklahoma! You made our day.
Love, Juli
Additionally, we are on track to start a new IV treatment called Timsirolimus, or Torisel, after an appointment next Wednesday with Dr Keller. The plan is to do Torisel weekly for 8 weeks, at which time we'll do scans to measure progress. If there's regression, we'll keep doing it. If there's progression, we will stop the Torisel for 4 weeks, and proceed to Bethseda for the NCI Clinical Trial. He's ineligible for the trial for 3 months after radiation, and 1 month after any systemic treatment. We are comfortable with this plan, and relieved to finally have a longer range plan.
The Concerns:
1. The laundry list of potential side effects from radiation in the left temporal lobe include nasty things like dependence on steroids due to swelling, permanent cognitive and speech issues, and even violent tendencies. Lovely.
2. Torisel side effects include fatigue, mouth sores, hives, itching, swelling. Been there, done that.
On the positive side, we were extremely blessed today by receiving over 50 text messages from some of the pledges in Michaels fraternity. It's Initiation Week, so I imagine the pledges are swamped with lots of unpleasant tasks, but this one was optional. Just a sampling:
Now that's some fraternity hazing I could actually support. Thank you to all the fine young men of the Sigma Phi Epsilon fraternity at the University of Oklahoma! You made our day.
Love, Juli
Next Stop: Radiation
We have an appointment today with a Radiation Oncologist to consider radiation. Dr Keller is recommending a localized radiation treatment as a followup to the surgery. At this point, we have more questions than answers, but hopefully we will learn more today.
Dr Keller is getting more information about Bobby's eligibility for the clinical trial at Bethesda. No new news on that front.
Speech therapy begins on Wednesday. That should be interesting. Bobby seems to be doing better, but I'm not sure if we haven't just changed the way we communicate to accommodate the changes. This week was particularly frustrating, because I decided to finally make the plunge to update our computers and devices to new operating systems. Under the best of circumstances this can be a daunting task with two iMacs, one laptop, two iPhones and an iPad, but we had the added aggravation of a complete system crash while upgrading the older iMac. Naturally, it's the one Bobby uses. I took it to the Apple Store in the mall, and when I picked it up 3 days later, they said it was "all fixed," only to get home, turn it on and find Lion was there, but none of our data. I restored the hard drive from the backup I'd made (thankful for that), only to find 3 hours later that the data was there, but the operating system was back to Snow Leopard. It didn't help that the "Geniuses" at Apple said the problem was that I should have backed it up under Lion, which of course was impossible, since the backup was done before the installation, just in case this very thing happened. Not sure which was more frustrating, explaining that to the "Genius" or to my husband with a brain impairment! We took it back to the Apple Store, and thankfully picked it up yesterday, all good. While ordinarily I'm a huge Apple fan, this would not be a good week to ask my opinion!
Things are settling back into a routine: I'm doing some work from home, Bobby's back at his men's groups, we're hitting the gym, going to church, doing household projects. Routine is a good thing.
Thanks for checking it with us, and for praying for us to make a good decision about the next steps.
Love, Juli
Dr Keller is getting more information about Bobby's eligibility for the clinical trial at Bethesda. No new news on that front.
Speech therapy begins on Wednesday. That should be interesting. Bobby seems to be doing better, but I'm not sure if we haven't just changed the way we communicate to accommodate the changes. This week was particularly frustrating, because I decided to finally make the plunge to update our computers and devices to new operating systems. Under the best of circumstances this can be a daunting task with two iMacs, one laptop, two iPhones and an iPad, but we had the added aggravation of a complete system crash while upgrading the older iMac. Naturally, it's the one Bobby uses. I took it to the Apple Store in the mall, and when I picked it up 3 days later, they said it was "all fixed," only to get home, turn it on and find Lion was there, but none of our data. I restored the hard drive from the backup I'd made (thankful for that), only to find 3 hours later that the data was there, but the operating system was back to Snow Leopard. It didn't help that the "Geniuses" at Apple said the problem was that I should have backed it up under Lion, which of course was impossible, since the backup was done before the installation, just in case this very thing happened. Not sure which was more frustrating, explaining that to the "Genius" or to my husband with a brain impairment! We took it back to the Apple Store, and thankfully picked it up yesterday, all good. While ordinarily I'm a huge Apple fan, this would not be a good week to ask my opinion!
Things are settling back into a routine: I'm doing some work from home, Bobby's back at his men's groups, we're hitting the gym, going to church, doing household projects. Routine is a good thing.
Thanks for checking it with us, and for praying for us to make a good decision about the next steps.
Love, Juli
Progress and Humor Sense
Things are definitely looking up. Bobby's making incredible progress physically. Last week, after getting the go-ahead from Dr Fell, we hit the bike trail. It was a gorgeous day, unseasonable warm for January. Twenty miles later, I'm embarrassed to say I was struggling to keep up! The exercise did us both a world of good, physically and emotionally.
Dr Fell also agreed that Bobby's speech impairment was "significant" and wrote orders for speech therapy, which will begin next week. In the meantime, our friend Nancy, a former speech therapist, brought over a workbook so we could do some "home-schooling." Such overachievers we are! Nancy said he's already doing the most important thing, by continuing to engage in conversations about varied subjects, even if he doesn't get all the words right.
We also discussed the emotional & psychological issues associated with brain injury, and Dr Fell reassured us that what we're experiencing is all normal. Frustration, anxiety and depression are to be expected and should resolve over time. Interestingly, Bobby mentioned that he thought he had lost his "humor sense" (which was heartbreaking for me to hear since his sense of humor is one of the top three reasons I married him!). Over the holidays, if someone shared a joke he didn't seem to "get it" or think it was very funny. Dr Fell explained that humor is often based on word usage, sarcasm and irony, so it's understandable that things might not seem humorous.
Because of the risk of seizures, Bobby is on Keppra for probably a year. Dr Fell suggested that he not drive alone for a month. He can drive, but I should be in the car with him. To which Bobby replied, "Okay, but my half brain better driver than her drive." So much for the loss of a sense of humor. It was hilarious, even if his humor is at my expense! And for the record, I'm not that bad of a driver. Just don't ask anyone who's ever driven with me.
Dr Fell also agreed that Bobby's speech impairment was "significant" and wrote orders for speech therapy, which will begin next week. In the meantime, our friend Nancy, a former speech therapist, brought over a workbook so we could do some "home-schooling." Such overachievers we are! Nancy said he's already doing the most important thing, by continuing to engage in conversations about varied subjects, even if he doesn't get all the words right.
We also discussed the emotional & psychological issues associated with brain injury, and Dr Fell reassured us that what we're experiencing is all normal. Frustration, anxiety and depression are to be expected and should resolve over time. Interestingly, Bobby mentioned that he thought he had lost his "humor sense" (which was heartbreaking for me to hear since his sense of humor is one of the top three reasons I married him!). Over the holidays, if someone shared a joke he didn't seem to "get it" or think it was very funny. Dr Fell explained that humor is often based on word usage, sarcasm and irony, so it's understandable that things might not seem humorous.
Because of the risk of seizures, Bobby is on Keppra for probably a year. Dr Fell suggested that he not drive alone for a month. He can drive, but I should be in the car with him. To which Bobby replied, "Okay, but my half brain better driver than her drive." So much for the loss of a sense of humor. It was hilarious, even if his humor is at my expense! And for the record, I'm not that bad of a driver. Just don't ask anyone who's ever driven with me.
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