It's been quite some time without an update, but there hasn't been much updating to do. The four weeks after Jesse's last radiation treatment were an attempt at normalcy... except the whole fact that he was still not allowed to drive or work. Oh, and the constant bugaboo of what if that MRI didn't look very good?
I think I did a pretty good job of going about as normal, or at least as masking what I was feeling as disappointment that certain other things didn't go our way (more on that later). I guess Jesse will be the best to ask about that, but I tried not to let my fear show. We had a few appointments for me, we celebrated our anniversary while camping with his (our) family in the Adirondacks. Finally the day before the MRI came and I couldn't hide it any more. He didn't have to ask why I was crying, but held me and said "I know, I'm scared too".
I didn't know, would we get the results that day? Expect a phone call the next day? Or wait until our appointment with the oncologist the following Tuesday? Well, one would think a call right away to say "we need to talk" is bad news, but the more time and imagination get to play with your mind the more "no, we're going to wait and let the oncologist talk about it" might not be so good.
A very good friend of mine shared with me Mark 11:24.Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours. I tried so hard to hold on to that, to believe that we had already been answered. But let me tell you: That fear is strong.
Anyways. The day of the results finally arrived. We had a 1:00 with the radiation oncologist, and 2:30 with oncology. I thought we would be waiting until 2:30 to get the results because typically radiation just went over bloodwork. But I was very surprised when the doctor came in and said "Well, let's just get right down to the results". Jesse was on the table, my mother-in-law gripped my hand. You could almost feel the tension bleed out of the room when the doctor said "There was minimal shrinking in the tumor". I don't remember very much of what she said after that point... what else mattered? The treatments were a success and we are moving in the right direction. I tuned back in when we talked to oncology. I clearly remember hearing the words "optimistic", "improving", "doing well", and discussing what it meant that the tumor was less dense. I don't fully understand all the science behind it, but that's why they're the experts.
Apparently the first MRI doesn't often show dramatic shrinkage but when the contrast shows that the tumor has decreased in density, it's a good indicator that it will continue to respond, and has decreased in aggression. So while we are not out of the woods yet, we are most definitely on the right track. Effective tomorrow he has been released to go back to work part-time and supervised daytime driving. There is still a lot of worry of him overdoing and wearing himself out, so this is on a trial basis to see how he responds. He also just finished his first round of 5/23 Temodar... 5 days of a double dose of the chemo pills, and now he has a 23 day break before we repeat. In about 6 months they said they'll feel a lot more confident in a prognosis and saying if he needs to keep doing the Temodar. Regular MRI will continue indefinitely to make sure there's no regrowth.
The oncologist used a great analogy. He compared the tumor to a weed in the garden. You pull out as much as you can by hand (the surgery) then use a weed killer on the rest of it (radiation/chemo). Sometimes, you'll get rid of it all. Sometimes you are left with a stump, and just have to watch to make sure there's no new shoots coming off it, and that it's not growing back. I quite like his oncologist... he knows his stuff but he knows how to dumb it down to street level so we can understand what it means.
I would be remiss if I didn't talk about our fundraiser, and our wonderful community. My Zumba instructor volunteered to host an event with 2 hours of Zumba, raffles, community and friends to help offset the cost of Jesse's bills. To say the least, it was a great success. Everybody in attendance had a wonderful time, even Jesse was able to get up and dance with us. There are no words to express the depth of our gratitude to Karen for hosting the event for us, and to everybody who either donated raffle prizes or came to support us!
I knew this blog was likely to get lengthy tonight. One part of healing Team Stearns is on a great trajectory and likely taking a calmer path now. The other comes with just as long of an update, and will be coming on a following post. Stay tuned for an update on the other half of Team Stearns, that may only just be getting started....
I think I did a pretty good job of going about as normal, or at least as masking what I was feeling as disappointment that certain other things didn't go our way (more on that later). I guess Jesse will be the best to ask about that, but I tried not to let my fear show. We had a few appointments for me, we celebrated our anniversary while camping with his (our) family in the Adirondacks. Finally the day before the MRI came and I couldn't hide it any more. He didn't have to ask why I was crying, but held me and said "I know, I'm scared too".
I didn't know, would we get the results that day? Expect a phone call the next day? Or wait until our appointment with the oncologist the following Tuesday? Well, one would think a call right away to say "we need to talk" is bad news, but the more time and imagination get to play with your mind the more "no, we're going to wait and let the oncologist talk about it" might not be so good.
A very good friend of mine shared with me Mark 11:24.Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours. I tried so hard to hold on to that, to believe that we had already been answered. But let me tell you: That fear is strong.
Anyways. The day of the results finally arrived. We had a 1:00 with the radiation oncologist, and 2:30 with oncology. I thought we would be waiting until 2:30 to get the results because typically radiation just went over bloodwork. But I was very surprised when the doctor came in and said "Well, let's just get right down to the results". Jesse was on the table, my mother-in-law gripped my hand. You could almost feel the tension bleed out of the room when the doctor said "There was minimal shrinking in the tumor". I don't remember very much of what she said after that point... what else mattered? The treatments were a success and we are moving in the right direction. I tuned back in when we talked to oncology. I clearly remember hearing the words "optimistic", "improving", "doing well", and discussing what it meant that the tumor was less dense. I don't fully understand all the science behind it, but that's why they're the experts.
Apparently the first MRI doesn't often show dramatic shrinkage but when the contrast shows that the tumor has decreased in density, it's a good indicator that it will continue to respond, and has decreased in aggression. So while we are not out of the woods yet, we are most definitely on the right track. Effective tomorrow he has been released to go back to work part-time and supervised daytime driving. There is still a lot of worry of him overdoing and wearing himself out, so this is on a trial basis to see how he responds. He also just finished his first round of 5/23 Temodar... 5 days of a double dose of the chemo pills, and now he has a 23 day break before we repeat. In about 6 months they said they'll feel a lot more confident in a prognosis and saying if he needs to keep doing the Temodar. Regular MRI will continue indefinitely to make sure there's no regrowth.
The oncologist used a great analogy. He compared the tumor to a weed in the garden. You pull out as much as you can by hand (the surgery) then use a weed killer on the rest of it (radiation/chemo). Sometimes, you'll get rid of it all. Sometimes you are left with a stump, and just have to watch to make sure there's no new shoots coming off it, and that it's not growing back. I quite like his oncologist... he knows his stuff but he knows how to dumb it down to street level so we can understand what it means.
I would be remiss if I didn't talk about our fundraiser, and our wonderful community. My Zumba instructor volunteered to host an event with 2 hours of Zumba, raffles, community and friends to help offset the cost of Jesse's bills. To say the least, it was a great success. Everybody in attendance had a wonderful time, even Jesse was able to get up and dance with us. There are no words to express the depth of our gratitude to Karen for hosting the event for us, and to everybody who either donated raffle prizes or came to support us!
I knew this blog was likely to get lengthy tonight. One part of healing Team Stearns is on a great trajectory and likely taking a calmer path now. The other comes with just as long of an update, and will be coming on a following post. Stay tuned for an update on the other half of Team Stearns, that may only just be getting started....
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