We're settling into our all too familiar accommodations here at Vanderbilt Medical Center. The good news is we're in the larger room, not the tweensy one from our last stay. It's not huge, but at least my blue chair can extend fully without blocking the bathroom door. Woo hoo! Thanks to whoever prayed about that!
Bobby's starting this a little on the tired side - probably from all that yardwork and not sleeping real great the last couple of nights. But he's got that Bring It On attitude that just wants to get it started so we can get it behind us. I'm not really sure if it's better to go into this with or without the personal experience and expectation of what's to come, but I'm hoping that we'll be more prepared and able to stay ahead of the side effects. We'll see.
A Slight Change of Plans
Yep, you're right, today should have been Day 1 of a new round of IL2, but everything's been delayed a week. We finally heard from Dr Sosman at 5:15 last Friday night, on our way to a wedding. He apparently forgot that he mentioned the date June 16th back in March, and also apparently didn't realize that we had circled the date in red and have revolved our lives and schedules around that date. While the week delay caused a few inconveniences, overall we're choosing to kind of appreciate the extra week to relax and get things ready. The date had been chosen because of all the spring activities we had planned, most recent of which was a special wedding on Friday night. Leslie's college roommate Katie married one of Leslie's high school friends, Bobby. It was a busy, fun, exciting, emotional and bittersweet week as we celebrated the beginning of their new lives together and yet all the while Leslie's absence was deeply felt, as she was the one who'd introduced them while at OU. Ten of Leslie's close friends were in the wedding and many of her high school/college friends were there. I continue to be so blessed by their friendships, as I often say I consider Leslie's friends to be her inheritance to me.
Michael is camping/hiking in Colorado this week, and Trip is starting week 6 of his 4 month deployment to the United Arab Emirates. While we thought it would be good for Michael to be gone one of the three weeks we'd be away, I'm actually kind of glad to be here at the home base while there are both far away.
In the meantime, Bobby has taken on a big landscaping project involving rocks, gravel, dirt and sod, not to mention the 90 degree heat. Not bad for a guy with stage 4 renal cell carcinoma, huh? The exercise is probably the best thing for him right now, both mentally and physically.
Thanks for checking in on us. We appreciate you! Love, Juli
Michael is camping/hiking in Colorado this week, and Trip is starting week 6 of his 4 month deployment to the United Arab Emirates. While we thought it would be good for Michael to be gone one of the three weeks we'd be away, I'm actually kind of glad to be here at the home base while there are both far away.
In the meantime, Bobby has taken on a big landscaping project involving rocks, gravel, dirt and sod, not to mention the 90 degree heat. Not bad for a guy with stage 4 renal cell carcinoma, huh? The exercise is probably the best thing for him right now, both mentally and physically.
Thanks for checking in on us. We appreciate you! Love, Juli
It's June Already??
The past two months have been a blur. In April, we took a fun getaway trip with friends to San Francisco for some much needed away time. We flew home by way of Phoenix where we attended Bobby's Desert Storm Reunion. It was great reconnecting with lots of our AF friends and recall those eventful days of 1991. Bobby took on the challenge of putting together the video for the reunion, after I convinced him that sure, he could learn imovie and idvd, how to scan photos & digitize video from ancient VHS tapes. Who said you can't teach an old dog new tricks?! In just a mere 100 hours, he did a fantastic job putting together not one but two reunion videos, which opened to rave reviews. We made 65 copies, sold them at the reunion and gave the proceeds to the River Rats Scholarship Fund. It was a lot of work, but well worth it. And as a side benefit, I now have that camera-bug husband I've always wanted. After we returned, he made a video for Michael's HS graduation, a slideshow for the grad party w/5 other kids, and a video of our trip to San Francisco.
There have been no idle hands around here while we're waiting for the next round of treatment. Besides the trip, Michael graduated from High School and my parents moved out of their house into a retirement community, all in the past month. I've said for years that in many ways the month of May is crazier than December, and this year was no exception.
Speaking of treatment, as far as we know we are on schedule to start on June 16th. We're expecting a call this week from Dr Sosman to confirm everything. The catscan last week showed some slight progression in the tumor size in the adrenal glands, not exactly what we'd hope to see, but not terrible news. We're in the wait-and-see mode, unfortunately not an unfamiliar place at all.
Thanks for praying in advance for things to go smoothly and successfully, for wisdom in decision making, for physical strength and endurance for Bobby. Oh, and if someone would pray that we'd get that bigger room, that would be wonderful! :)
Love, Juli
There have been no idle hands around here while we're waiting for the next round of treatment. Besides the trip, Michael graduated from High School and my parents moved out of their house into a retirement community, all in the past month. I've said for years that in many ways the month of May is crazier than December, and this year was no exception.
Speaking of treatment, as far as we know we are on schedule to start on June 16th. We're expecting a call this week from Dr Sosman to confirm everything. The catscan last week showed some slight progression in the tumor size in the adrenal glands, not exactly what we'd hope to see, but not terrible news. We're in the wait-and-see mode, unfortunately not an unfamiliar place at all.
Thanks for praying in advance for things to go smoothly and successfully, for wisdom in decision making, for physical strength and endurance for Bobby. Oh, and if someone would pray that we'd get that bigger room, that would be wonderful! :)
Love, Juli
The Plan
So, today was the big day. We finally had a person to person phone call with Dr Sosman, after a week of phone tag, and a month of waiting since the last CT. He agreed there is definite regression in the tumors which he thinks warrants another round of IL-2 treatment. We told him our number one concern is the effectiveness of the treatment, but we did have a few things on our calendar we would love to be able to work around. He was very agreeable and felt there would be no compromise in the treatment if we wait until June to start. So, as of now, we are planning to return to Nashville and start treatment on Tuesday, June 16th. The schedule is the same, 5 days on IL-2, 9 days off, 5 days on. We should be in Nashville until after the 4th of July. Bobby will have another CT Scan in May, but regardless of the results, Dr Sosman felt another round would be beneficial. We are thrilled to have a date on the calendar, although as Bobby told Dr Sosman, he's not looking forward to it. To which Dr Sosman replied, "if you were, I'd be more worried about you."
Thanks again for your faithful prayers,
Juli
Thanks again for your faithful prayers,
Juli
What's Not to Like about Good News?
We're pleased to report that the results of Bobby's CT Scan last week were very positive. The tumors are continuing to shrink, the left adrenal gland is now about half it's size compared to October, before the IL2 treatment!! Everything else we're watching was stable to slightly reduced in size. If fact, Dr Keller said he's beginning to think the spots we've been watching in the lungs may indeed not be cancer since they have been unchanged since we first started watching them in June 07. The right adrenal gland hadn't shrunk as much, but it was smaller to begin with and the scan image was not as clear. We are very encouraged by this good news.
We learned a little more about what IL2 does that was interesting. Dr Keller said IL2 affects the immune system by "rejiggerin' the t-cells" (love it when he speaks patient-talk, not doctor-talk) and that it has a lingering effect. Now that it's been tweaked, Bobby's immune system is continuing to fight the cancer. That explained, at least in our minds, why it was wiser to wait and see what would happen, rather than go back in for more treatment.
Dr Keller said he would talk to Dr Sosman this week, and we should hear from one or the other as to the next step. In the meantime, we're trying to work on the diet and exercise routine. Bobby's added a few nutrition supplements that we've been reading about. He drinks Essiac Tea and Green Tea, and takes Tumeric (a spice used in Indian cooking) and Resveratrol (the equivalent of 100 glasses of wine a day). We are also just trying to eat better in general, more fish & vegetables, less sugar, etc. When we told Dr Keller we'd added these supplements he replied, "can't hurt, might help." Bobby's also trying to become the gym rat he's always wanted to be, even talking about taking up racquetball again.
Thanks for checking on us, and for continuing to pray. Love, Juli
We learned a little more about what IL2 does that was interesting. Dr Keller said IL2 affects the immune system by "rejiggerin' the t-cells" (love it when he speaks patient-talk, not doctor-talk) and that it has a lingering effect. Now that it's been tweaked, Bobby's immune system is continuing to fight the cancer. That explained, at least in our minds, why it was wiser to wait and see what would happen, rather than go back in for more treatment.
Dr Keller said he would talk to Dr Sosman this week, and we should hear from one or the other as to the next step. In the meantime, we're trying to work on the diet and exercise routine. Bobby's added a few nutrition supplements that we've been reading about. He drinks Essiac Tea and Green Tea, and takes Tumeric (a spice used in Indian cooking) and Resveratrol (the equivalent of 100 glasses of wine a day). We are also just trying to eat better in general, more fish & vegetables, less sugar, etc. When we told Dr Keller we'd added these supplements he replied, "can't hurt, might help." Bobby's also trying to become the gym rat he's always wanted to be, even talking about taking up racquetball again.
Thanks for checking on us, and for continuing to pray. Love, Juli
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