I know that it's been a bit since I've written about our journey. I appreciate your patience and understanding. It's crazy how one day can turn into many days before you know it. It seems like just yesterday that I said good bye to my kids for the summer, and today I found myself back at school in a staff meeting. It also seems like just yesterday when we were struggling to find a way through treatments with the dreaded mask. And today I took Joe to his 33rd and last treatment. Where did the summer go?
Overall, I think that Joe has done very well during these many weeks of radiation and chemo. Physically the worst has been feeling tired, which is annoying and at many times frustrating, but mild compared to the many things that we were warned about.
Today we went to the last treatment. He feels like he really got zapped today. We were also told to expect the effects of the radiation will last over the next several weeks. So it is to be expected that he'll be tired, but the radiation is still killing the nasty tumor in his brain. So, that's a good thing.
He has an appointment with the doctor in a couple of weeks, and he'll have an MRI towards the end of September. The images from that MRI will let us know how the tumor responded to the radiation and chemo. So, for the next several weeks we'll have a rest from appointments, medications, and as much as we love them, doctors.
Thank you for following our journey and sending you prayers and warm wishes. I feel like one chapter has come to a close, and we are beginning another one. I'm grateful for the period of rest ahead of us.
on another note...
I'm excited for the new school year as well. I'll get to enjoy a new classroom, new partner, new grade, new curriculum, and some new students (Since I'm moving up to 6th grade from 5th, I look forward to continuing with some of my students from last year).
Monday, August 29, 2011
Monday, August 1, 2011
My Birthday!
In yesterday's post I talked about perspective. And today was my birthday.
It started out with a wonderful ride on Payton after taking Joe to work. I did not make it out before the heat in east county, but it was a great ride. I was grateful to see Bree waving an ice-cold water in my direction at the end of my ride. After Payton, I rode Cinco, and had another great time. :)
Then I took Joe for his weekly labs to monitor his counts, and then to radiation. Getting him back from radiation, he was ready for a long nap. After getting him settled, I took advantage of the beautiful day in San Diego to spent some time on the beach.
The warmth of the sand and the hypnotic sound of the waves reminded me that even when things in my life seem to be spinning out of control, the world around me is still going on. When I went out into the water I found dozens of live sand-dollars! They are purple and fuzzy. They were so neat!
My wonderful sister had invited me to dinner earlier, but needed to postpone. "No worries," I told her. "It's my birthday month!" So, Joe and I went to Olive Garden. I was craving gluten free pasta and wine. It was delicious!
All in all, it was great to have such a wonderful birthday! Although a lot in my life has changed since June 10th, it was really nice to feel like some things are the same... ish... :)
It started out with a wonderful ride on Payton after taking Joe to work. I did not make it out before the heat in east county, but it was a great ride. I was grateful to see Bree waving an ice-cold water in my direction at the end of my ride. After Payton, I rode Cinco, and had another great time. :)
Then I took Joe for his weekly labs to monitor his counts, and then to radiation. Getting him back from radiation, he was ready for a long nap. After getting him settled, I took advantage of the beautiful day in San Diego to spent some time on the beach.
The warmth of the sand and the hypnotic sound of the waves reminded me that even when things in my life seem to be spinning out of control, the world around me is still going on. When I went out into the water I found dozens of live sand-dollars! They are purple and fuzzy. They were so neat!
My wonderful sister had invited me to dinner earlier, but needed to postpone. "No worries," I told her. "It's my birthday month!" So, Joe and I went to Olive Garden. I was craving gluten free pasta and wine. It was delicious!
All in all, it was great to have such a wonderful birthday! Although a lot in my life has changed since June 10th, it was really nice to feel like some things are the same... ish... :)
Perspective
Last week I was blessed to be able to spend time at the IDEAS science training. As in an activity we looked at several pictures taken up close of everyday objects. Some were really difficult to figure out.
I've been thinking a lot about Cheryl's comment to my last post about not always being Polyanna. She really helped me put the situation into perspective. She reminded me that a couple of weeks ago I wouldn't be worrying about someone taking Joe to his radiation appointment because neither Joe nor I were at a place where we would allow that to happen. We have made it to another part of our journey.
Looking back at the week, we both made a lot of progress. Monday was quite rocky as Joe ended up in the ER because his vision went a bit crazy, but made it to his radiation appointment after his vision returned to "normal"and everything checked out okay in the ER. Throughout Monday I checked my phone about a billion times worrying about him. It was a big relief when Andy (his dad) texted me that he was home safe from the "ray gun" appointment.
I was nervous on Tuesday as well, not because I didn't trust Tony (Tuesday's driver), but because it was out of my hands, my control. Again I checked my phone continuously throughout the day, and wasn't able to breathe deeply until hearing that he was home safe. Wednesday was the same. But by Thursday, I was able to let go of that worry as I realized that I could let go of that control and things would be okay. At the end of the day on Friday, I realized that I hadn't compulsively checked my phone at all during the day. Even more liberating at that moment was realizing that I wasn't anxious about checking it. :) YAY!
Since the diagnosis, so many people from so many different parts of our lives have not only sent warm thoughts, powerful prayers, and encouraging words, but they've offered to help. Over and over, the offer has been, "... whatever you need..." The offers have been so kind, but I haven't known where I need help nor have felt comfortable letting go of some of the responsibility.
This past week was a great exercise in both. As Cheryl pointed out, we were both at a point where this opportunity could happen. I had a training providing the purpose for such an opportunity as it created a need from which I asked for help and found out that it was okay not only in theory, but also in practice.
Perspective can make all the difference in processing a situation.
I've been thinking a lot about Cheryl's comment to my last post about not always being Polyanna. She really helped me put the situation into perspective. She reminded me that a couple of weeks ago I wouldn't be worrying about someone taking Joe to his radiation appointment because neither Joe nor I were at a place where we would allow that to happen. We have made it to another part of our journey.
Looking back at the week, we both made a lot of progress. Monday was quite rocky as Joe ended up in the ER because his vision went a bit crazy, but made it to his radiation appointment after his vision returned to "normal"and everything checked out okay in the ER. Throughout Monday I checked my phone about a billion times worrying about him. It was a big relief when Andy (his dad) texted me that he was home safe from the "ray gun" appointment.
I was nervous on Tuesday as well, not because I didn't trust Tony (Tuesday's driver), but because it was out of my hands, my control. Again I checked my phone continuously throughout the day, and wasn't able to breathe deeply until hearing that he was home safe. Wednesday was the same. But by Thursday, I was able to let go of that worry as I realized that I could let go of that control and things would be okay. At the end of the day on Friday, I realized that I hadn't compulsively checked my phone at all during the day. Even more liberating at that moment was realizing that I wasn't anxious about checking it. :) YAY!
Since the diagnosis, so many people from so many different parts of our lives have not only sent warm thoughts, powerful prayers, and encouraging words, but they've offered to help. Over and over, the offer has been, "... whatever you need..." The offers have been so kind, but I haven't known where I need help nor have felt comfortable letting go of some of the responsibility.
This past week was a great exercise in both. As Cheryl pointed out, we were both at a point where this opportunity could happen. I had a training providing the purpose for such an opportunity as it created a need from which I asked for help and found out that it was okay not only in theory, but also in practice.
Perspective can make all the difference in processing a situation.
Monday, July 25, 2011
...just another day... kinda
Today was an interesting day. I don't think that "interesting" is the right word, but it was all I could think of...
This week I'm participating in a science training for school. It is every day from 8:00 to 4:30. Since the training happens during Joe's radiation appointments, some wonderful people have offered to take him to his appointments. Both of us have been a little nervous about this as it is out of what we had established as routine. Joe has still been going to work and has enjoyed tremendous support from the staff he works with. (Truly we are both so blessed in so many ways.) So, I dropped him off at work this morning, and the plan was for Andy (his dad) to pick him up for his appointment, then take him home.
This was a great plan until... his eyesight started going "haywire" in the early afternoon. He was seeing similar starburst type things as the first night we went to the ER. So, Andy took him to the ER to get checked out. It was not too long after they arrived that he began to feel a lot better. (I think it's kind of like when you take your car to the mechanic because it's making a sound, and it doesn't make that sound when you get there.) Anyways, they gave him fluids and did a CT scan to check for fluid build up in the brain.
Andy texted me when he went down for the scan because he wasn't sure if they would be out in time for what he called the "ray gun" appointment. I called the radiation center and let them know.
The scan came back normal (except for the tumor of course... but we all knew about that... this time). So they released him. The neurosurgeon did mention that things like this could happen after the surgery for the biopsy. whew! Big relief!
They made it to the "ray gun" appointment on time and then they went to dinner at Chili's.
Now Joe is home resting after his adventurous day and feeling much better. :)
This week I'm participating in a science training for school. It is every day from 8:00 to 4:30. Since the training happens during Joe's radiation appointments, some wonderful people have offered to take him to his appointments. Both of us have been a little nervous about this as it is out of what we had established as routine. Joe has still been going to work and has enjoyed tremendous support from the staff he works with. (Truly we are both so blessed in so many ways.) So, I dropped him off at work this morning, and the plan was for Andy (his dad) to pick him up for his appointment, then take him home.
This was a great plan until... his eyesight started going "haywire" in the early afternoon. He was seeing similar starburst type things as the first night we went to the ER. So, Andy took him to the ER to get checked out. It was not too long after they arrived that he began to feel a lot better. (I think it's kind of like when you take your car to the mechanic because it's making a sound, and it doesn't make that sound when you get there.) Anyways, they gave him fluids and did a CT scan to check for fluid build up in the brain.
Andy texted me when he went down for the scan because he wasn't sure if they would be out in time for what he called the "ray gun" appointment. I called the radiation center and let them know.
The scan came back normal (except for the tumor of course... but we all knew about that... this time). So they released him. The neurosurgeon did mention that things like this could happen after the surgery for the biopsy. whew! Big relief!
They made it to the "ray gun" appointment on time and then they went to dinner at Chili's.
Now Joe is home resting after his adventurous day and feeling much better. :)
Saturday, July 23, 2011
Not Always Pollyanna
I've been trying to spin things in a positive light. Every time shit happens or I feel overwhelmed, I look for the silver lining. I look for the lesson. I look for where and how God is molding crappy stuff into useful, beautiful pieces of art. I'm really good at this, and I'm thankful for that gift. But is that always realistic and the best course of action? I'm not saying that it's a bad thing to do to look on the sunny side of a situation, but at some point the not-so-sunny side needs to be acknowledged because it's part of the situation too.
For days I've felt a welling of sorrow in my throat. I know that keeping busy helps keep the tears away, as as I've been busy, they've stayed away. But there have been moments when I've been in a safe place to let them come. Several times they've seemed to start, but for one reason or another, they stopped. I think that I was trying to pin down a specific reason before allowing them.
Finally tonight I was out with the dogs...alone...and I felt the tears knocking at the door again. I told them it was okay to come. I was in a safe place where I wouldn't cause anyone alarm, and they wouldn't be stopped. As I felt my eyes begin to fill with water, I felt sorrow. As I allowed that feeling to stay, I realized the cause... loss.
The news of the tumor meant a loss of a life as I had come to know it in so many ways. I so feel for Joe as he has certainly, at least for a time, lost so much of his life as he knew it. He has lost not just his short-term memory and energy, but so much more painful has been loosing a sense of independence and confidence. Simple decisions and tasks we both took for granted have now seemed like huge mountains to climb. I miss the freedom that we both enjoyed, and now, at least for a time, is gone. So now with a specific cause for the sorrow, the tears finally came out.
With those tears for the current situation came more tears of loss from the past. I didn't filter. I didn't discriminate. I didn't judge. I just let them come.
Then, finally they stopped. They were done. I took a deep breath and finally sat in peace. Not in happiness, not in contentment, but no longer feeling like I had a bounty of tears chomping at the bit to burst out.
I hesitated to share this writing in the blog because I'm trying to keep things as positive as possible. But this too is part of the journey. And I know that readers of this blog are kind, compassionate, and will understand completely.
Thank you all so very, very much for your prayers, encouragement, support, and most of all... your LOVE.
Gilly
For days I've felt a welling of sorrow in my throat. I know that keeping busy helps keep the tears away, as as I've been busy, they've stayed away. But there have been moments when I've been in a safe place to let them come. Several times they've seemed to start, but for one reason or another, they stopped. I think that I was trying to pin down a specific reason before allowing them.
Finally tonight I was out with the dogs...alone...and I felt the tears knocking at the door again. I told them it was okay to come. I was in a safe place where I wouldn't cause anyone alarm, and they wouldn't be stopped. As I felt my eyes begin to fill with water, I felt sorrow. As I allowed that feeling to stay, I realized the cause... loss.
The news of the tumor meant a loss of a life as I had come to know it in so many ways. I so feel for Joe as he has certainly, at least for a time, lost so much of his life as he knew it. He has lost not just his short-term memory and energy, but so much more painful has been loosing a sense of independence and confidence. Simple decisions and tasks we both took for granted have now seemed like huge mountains to climb. I miss the freedom that we both enjoyed, and now, at least for a time, is gone. So now with a specific cause for the sorrow, the tears finally came out.
With those tears for the current situation came more tears of loss from the past. I didn't filter. I didn't discriminate. I didn't judge. I just let them come.
Then, finally they stopped. They were done. I took a deep breath and finally sat in peace. Not in happiness, not in contentment, but no longer feeling like I had a bounty of tears chomping at the bit to burst out.
I hesitated to share this writing in the blog because I'm trying to keep things as positive as possible. But this too is part of the journey. And I know that readers of this blog are kind, compassionate, and will understand completely.
Thank you all so very, very much for your prayers, encouragement, support, and most of all... your LOVE.
Gilly
Thursday, July 21, 2011
Success with No Drugs!
One week ago today Joe started his radiation treatments. He started his first treatment taking two valium. That was what finally helped him go through the CT scan while snapped to the table in his mask. Since the first treatment went so well, he's been taking less and less of the valium.
...and today he made it through with NO VALIUM!
I think that I needed a valium today as I waited in the waiting room. He was gone for much longer than usual. I was worried that he was having trouble. It turned out that they were taking some x-rays and it was a little longer treatment. Whew!
Then we met with Dr. Tova, his radiation doctor. She was just checking in on him and seeing if we had any questions.
Thank you again for all of your love and prayers!
Gilly
...and today he made it through with NO VALIUM!
I think that I needed a valium today as I waited in the waiting room. He was gone for much longer than usual. I was worried that he was having trouble. It turned out that they were taking some x-rays and it was a little longer treatment. Whew!
Then we met with Dr. Tova, his radiation doctor. She was just checking in on him and seeing if we had any questions.
Thank you again for all of your love and prayers!
Gilly
Monday, July 18, 2011
Beginning the First Full Week of R & C
After a restful weekend, Joe's first full week of enduring both radiation and chemo has begun. Tonight he only needed 1 of his anti-anxiety meds. Tomorrow he'll try half a tab. Each time gets easier and easier for him. It will be good when he can go in without the anti-anxiety meds. They are really messing with his cognition.
Tomorrow we will meet with his doctor.
We are certainly feeling in good hands.
Thank you all for your thoughts and prayers.
Tomorrow we will meet with his doctor.
We are certainly feeling in good hands.
Thank you all for your thoughts and prayers.
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