Marc's doctor appointment went well. He doesn't have to take the blood thinners any more and can get his port taken out whenever he can get it scheduled. It looks like that will happen over spring break.
Marc went back to work volunteering in his own classroom for a few days. Last week he worked half time. He immediately caught a cold, but was only down for a couple of days. Yesterday was his first full day back at work. He also got to take both kids to their events - Rose to swimming and Brett to guitar - as I had an event at my school. He made it though, but was very tired at the end of the day.
My new job is going well. It has been non-stop busy. One of my second graders told the speech pathologist that he has a new teacher because now all Mrs. Caughie does is plan parties!
Marc has a CAT scan every three months for the first year. I'll let you know how those go. Thanks for hanging in there with us! It's been quite a ride.
Tuesday, March 4, 2008
Sunday, February 10, 2008
Round 12
Marc has successfully completed his 12th round of chemo. It wasn't the easiest round or the hardest. We're just glad its almost over.
We head back to OHSU one more time on the 20th. Marc will have some blood work done, a CAT scan, and a visit with Dr. B.
We'll keep you posted as we near the end of this journey. Thanks for being with us through it all.
We head back to OHSU one more time on the 20th. Marc will have some blood work done, a CAT scan, and a visit with Dr. B.
We'll keep you posted as we near the end of this journey. Thanks for being with us through it all.
Thursday, January 24, 2008
Round 11
The roller coaster continues.
Marc's appointment for this treatment was at 8 a.m. - difficult at best for most people to take him in to OHSU since you have to leave at o-dark-hundred to get there on time. So we came up with a new plan - can't even count how many plans we have had through all this. I took Marc in before school and his martial arts instructor picked him up at 1:00ish. It was a good plan. Marc wasn't stuck at OHSU for several hours after his treatment was over before he could come home.
His blood counts were mixed. The part that usually is too low was fine. Another part of the blood count was low this time. They weren't going to give him treatment. I don't know if he talked them into waiting a bit and trying again or if it was the nurse's idea, but he did every trick in the book he'd heard of that can raise the white count and they tried again. It worked. His white count came up enough for them to give him treatment 11. One more. The light at the end of the tunnel is growing brighter.
By the end of next week I will be finished teaching second grade. I have accepted the position of intervention/literacy specialist in my building. It's a long story that started before mom died. It was finalized last week and the letters (one from the principals and one from me) went home to the parents on Friday. My job is posted and we should interview early next week. Then there will be a few days of transition with the new person. After that I'll start my new position.
For those of you who aren't sure what an intervention/literacy specialist does, join the crowd. There are many different ways that schools are using this position. Some have a specialist that works with groups of kids that need extra support. Some schools use the specialist to work with teachers in looking at reading assessment data, creating intervention plans, and matching kids' needs to programs that fit. Others use the position to mentor new teachers and to be a resource to find new instructional strategies and work with teams of teachers to try new things based on research and best practice. So far it sounds like I will be doing a bit of all of those things. I'll also be working with our Title 1 program (a federally funded program that helps kids in the bottom 25% not counting special ed kids). I'll work with the Title 1 "ladies" in scheduling, planning, etc. One of the fun parts of the Title 1 piece will be creating literacy activities for families to connect the school, families, and the community.
So, why make this change on top of everything else? It's a job I'm excited about. It will be more flexible. No more writing sub plans, conferencing with parents, doing hours of work on report cards, and no more settling arguments about who's chair it is...come on guys it's a chair - get one of the 25 other ones in the room...
Thank you to all the people that made my three peaceful days at home alone last weekend possible. Steph and Rose went to Arizona to visit my sister Donna. They had a great time. Marc and Brett went to his parent's house. I babysat Masen Saturday morning. When I got home I put my jammies on and didn't get out of them until Monday morning. I read the New York Times, watched many of the shows I had recorded and never had time to watch, and paid bills. Ok, the bills weren't so much fun, but it had to be done. I also went shopping Monday. I found a suit jacket at The Rack. Original price $138. Marked down to $34.90 and 60% off that. Mom would be proud.
My Aunt Lorna, mom's oldest sister, has been on my mind lately. I came very close to going out to the beach this weekend to see her, but decided to stay home and relax instead. It's a decision I regret. I know I needed the rest. I know she'd understand. Tuesday morning I read my email. Aunt Lorna is in hospice care. This being a chemo week and Rose having a swim meet this coming weekend, there is no way I can go now. I talked to Jane, her daughter-in-law, this morning. They weren't expecting her to make it through the day.
Our long-term disability check is in the mail. Unfortunately we have to send it back. It is for $10,000.00. Somehow they were given the wrong date for when the shared leave ran out. Bummer. I'll call tomorrow and straighten in out...
Someone offered me super glue since I'm on the last knot in my rope and my nails are breaking. The reality is - you are my super glue. Thanks to all of you who have made sure I haven't lost my grip.
Marc's appointment for this treatment was at 8 a.m. - difficult at best for most people to take him in to OHSU since you have to leave at o-dark-hundred to get there on time. So we came up with a new plan - can't even count how many plans we have had through all this. I took Marc in before school and his martial arts instructor picked him up at 1:00ish. It was a good plan. Marc wasn't stuck at OHSU for several hours after his treatment was over before he could come home.
His blood counts were mixed. The part that usually is too low was fine. Another part of the blood count was low this time. They weren't going to give him treatment. I don't know if he talked them into waiting a bit and trying again or if it was the nurse's idea, but he did every trick in the book he'd heard of that can raise the white count and they tried again. It worked. His white count came up enough for them to give him treatment 11. One more. The light at the end of the tunnel is growing brighter.
By the end of next week I will be finished teaching second grade. I have accepted the position of intervention/literacy specialist in my building. It's a long story that started before mom died. It was finalized last week and the letters (one from the principals and one from me) went home to the parents on Friday. My job is posted and we should interview early next week. Then there will be a few days of transition with the new person. After that I'll start my new position.
For those of you who aren't sure what an intervention/literacy specialist does, join the crowd. There are many different ways that schools are using this position. Some have a specialist that works with groups of kids that need extra support. Some schools use the specialist to work with teachers in looking at reading assessment data, creating intervention plans, and matching kids' needs to programs that fit. Others use the position to mentor new teachers and to be a resource to find new instructional strategies and work with teams of teachers to try new things based on research and best practice. So far it sounds like I will be doing a bit of all of those things. I'll also be working with our Title 1 program (a federally funded program that helps kids in the bottom 25% not counting special ed kids). I'll work with the Title 1 "ladies" in scheduling, planning, etc. One of the fun parts of the Title 1 piece will be creating literacy activities for families to connect the school, families, and the community.
So, why make this change on top of everything else? It's a job I'm excited about. It will be more flexible. No more writing sub plans, conferencing with parents, doing hours of work on report cards, and no more settling arguments about who's chair it is...come on guys it's a chair - get one of the 25 other ones in the room...
Thank you to all the people that made my three peaceful days at home alone last weekend possible. Steph and Rose went to Arizona to visit my sister Donna. They had a great time. Marc and Brett went to his parent's house. I babysat Masen Saturday morning. When I got home I put my jammies on and didn't get out of them until Monday morning. I read the New York Times, watched many of the shows I had recorded and never had time to watch, and paid bills. Ok, the bills weren't so much fun, but it had to be done. I also went shopping Monday. I found a suit jacket at The Rack. Original price $138. Marked down to $34.90 and 60% off that. Mom would be proud.
My Aunt Lorna, mom's oldest sister, has been on my mind lately. I came very close to going out to the beach this weekend to see her, but decided to stay home and relax instead. It's a decision I regret. I know I needed the rest. I know she'd understand. Tuesday morning I read my email. Aunt Lorna is in hospice care. This being a chemo week and Rose having a swim meet this coming weekend, there is no way I can go now. I talked to Jane, her daughter-in-law, this morning. They weren't expecting her to make it through the day.
Our long-term disability check is in the mail. Unfortunately we have to send it back. It is for $10,000.00. Somehow they were given the wrong date for when the shared leave ran out. Bummer. I'll call tomorrow and straighten in out...
Someone offered me super glue since I'm on the last knot in my rope and my nails are breaking. The reality is - you are my super glue. Thanks to all of you who have made sure I haven't lost my grip.
Wednesday, January 9, 2008
Round 10
Yippee! Marc's counts were up in just two weeks. Fortunately, it seems that the reduction in Oxaliplatin made a difference for Marc's white count. Unfortunately, it didn't make a huge difference in his neuropathy. So, the Oxaliplatin was discontinued completely. Marc is thrilled with the prospect of having his next treatments two weeks apart. He should finish by the first part of Feb. and be able to return to work the first of March.
This is actually really good timing. Dr. B has taken a job as the head of a department in Vancouver B.C. I don't have the letter in front of me, but I'm thinking it is at a university. Marc will be able to finish his treatments without having to switch doctors in the middle. He will have a cat scan and see Dr. B after all of his chemo treatments are finished. Then, his new doctor will be in charge of monitoring his long term health which will include a cat scan every six months for five years. The mom of one of his martial arts students is an oncologist and Marc thinks he will switch to her for his longterm follow-up care.
Marc had a check-up at the anti-coag clinic on the hill today as well. They are pleased with his progress. When I asked if Marc can stop the anti-coag meds at the end of chemo, she said that is a question for his dr. Good to know. Sometimes it is hard to know which questions to ask and then to know who to ask.
It is a relief to be thinking of the final logistics to all of this. It's not a process that becomes easier with time. This morning there was a lady checking in for her first treatment. She was so nervous and said she hadn't slept well last night. I nearly cried for her and her husband as they start through this journey. We have learned to navigate the system, understand the language, and gotten to know the procedures, but there are so many variables that it is impossible to feel stable. It always feels that we are standing on shifting sand. Changes and complications come out of nowhere. For us family and friends provided the stability to make it through. Thank you. We'd surely be institutionalized by now without all of you.
This is actually really good timing. Dr. B has taken a job as the head of a department in Vancouver B.C. I don't have the letter in front of me, but I'm thinking it is at a university. Marc will be able to finish his treatments without having to switch doctors in the middle. He will have a cat scan and see Dr. B after all of his chemo treatments are finished. Then, his new doctor will be in charge of monitoring his long term health which will include a cat scan every six months for five years. The mom of one of his martial arts students is an oncologist and Marc thinks he will switch to her for his longterm follow-up care.
Marc had a check-up at the anti-coag clinic on the hill today as well. They are pleased with his progress. When I asked if Marc can stop the anti-coag meds at the end of chemo, she said that is a question for his dr. Good to know. Sometimes it is hard to know which questions to ask and then to know who to ask.
It is a relief to be thinking of the final logistics to all of this. It's not a process that becomes easier with time. This morning there was a lady checking in for her first treatment. She was so nervous and said she hadn't slept well last night. I nearly cried for her and her husband as they start through this journey. We have learned to navigate the system, understand the language, and gotten to know the procedures, but there are so many variables that it is impossible to feel stable. It always feels that we are standing on shifting sand. Changes and complications come out of nowhere. For us family and friends provided the stability to make it through. Thank you. We'd surely be institutionalized by now without all of you.
Wednesday, December 26, 2007
Round 9 Take 1 & 2
Life has been a bit of a blur lately.
Marc's last round of chemo was predictably more difficult than the last. He noticed that the "fuzziness" in his hands and feet didn't totally go away after treatment eight. So, when we went in for treatment nine (the first time), the nurses were concerned. They haven't heard it described as "fuzzy" before, but the consensus was neuropathy. The nerve endings are being damaged. This is another side effect of the chemo. However, this side effect can become permanent and is directly linked to Oxaliplatin - one of the chemo drugs. Paula relayed the information to Dr. B to see if he thought the dosage should be reduced.
Marc's first appointment for treatment nine was last week. His count was low. 1.4 rather than 1.5. Bummer. The good news is it only took one more week for it to come up and Marc was able to have a nice Christmas. He'll have a chemo-brain New Year, but at least he's moving forward again.
Dr. B did reduce the dose of Oxaliplatin. We'll see if it makes a difference in the side effects. He's pretty wiped out tonight, but that's normal for this point in the treatment.
The kids went in with us today. While we waited for Marc to be checked in, I rode the tram up the hill and back down with Rose (no crowds). Brett had no interest, but Rose wanted to ride so off we went. When we returned, Marc was checked in and they had drawn his blood. He came out (Rose is too young to be in the infusion room so she and I were in the waiting room) with a big grin - he was 1.9. Brett and Rose both had gift certificates to Everyday Music so we took the streetcar across town while Marc had his treatment. It was very quiet in town. The slow holiday retail sales seemed to be continuing today. It was nice for us - no crowds.
Somehow this blog about Marc's disease has come to include more than just what is happening with Marc's treatment. Since the last blog I've done report cards (they went home the 10th), had a major repair done on the car (catalytic converter went out), traveled to Walla Walla for mom's memorial service (the 15th), hosted our family Christmas (18 on Saturday/Sunday), and had a quiet family Christmas (just us Christmas Eve - Mike, Steph and Masen joined us on Christmas day for dinner).
Report cards are my least favorite part of teaching - one of my least anyway. They take forever and I'm not sure the parents have any clearer idea of how their child is doing than before the hours of work.
While I was swamped in report cards my sister planned mom's service with input from us and some writing/editorial help from my sister-in-law. They did a beautiful job. If you happen to lose someone dear and need to see a program example that will knock your socks off, let me know. Donna created a trifold program. The entire inside was an expanded obituary with pictures. The front had mom's picture, name, etc. The flap you saw when you first open it had the order of the service and the back had a list of things "Grandma Loved." It was perfect.
Mom would have been pleased with the service. We know because we kept thinking, "I wish mom were here. She'd like this." Brett played Amazing Grace on his guitar. My cousin John read the even more expanded obituary. Two ladies sang a medly of children's songs like Jesus Loves Me, This Little Light of Mine, etc., as a tribute to the years mom spent working with the babies at church. Greg, a friend of my brother's, sang the last song. I didn't recognize it from the title and the title is escaping me right now, but I knew it when I heard it. Mom's dear friend Eunice put her head in my brother's lap and sobbed. What an amazing tribute to the lasting strength of friendship. Even now, it brings tears to my eyes to think of it.
We all grieve in our own way. My siblings and I had been through Alzheimer's with mom - from the beginning when she began to forget little things to the day she died with family and friends by her side that she no longer knew. Our pain is different than the pain of friends who knew her and shared the laughter and tears that only girlfriends can share. Mom's girlfriends were true to her through it all. Mary Ellen and Martha visited mom regularly even through her final months when it was so painful to see her vacant stare or her anxious running or her own tears of grief when she was aware enough to understand how far along her disease had progressed. Eunice lived further away. Even so when she was in town, she would stop in and see mom. There were others who were faithful to mom as well - Aunt Hilda, Bea, and other College Place friends. Our family is eternally in their debt for being close and comforting her through it all.
Christmas was a whirlwind. My siblings and their families were here last weekend. We missed Jennifer and Kim, two of my nieces, but maybe next year they can join us too. We laughed and ate and laughed some more. It was good to be together. I'm hoping Christmas brought as much joy to your family as it did to ours. We are counting the days till 2007 is over and we can start fresh in 2008. We're holding out for bliss.
Marc's last round of chemo was predictably more difficult than the last. He noticed that the "fuzziness" in his hands and feet didn't totally go away after treatment eight. So, when we went in for treatment nine (the first time), the nurses were concerned. They haven't heard it described as "fuzzy" before, but the consensus was neuropathy. The nerve endings are being damaged. This is another side effect of the chemo. However, this side effect can become permanent and is directly linked to Oxaliplatin - one of the chemo drugs. Paula relayed the information to Dr. B to see if he thought the dosage should be reduced.
Marc's first appointment for treatment nine was last week. His count was low. 1.4 rather than 1.5. Bummer. The good news is it only took one more week for it to come up and Marc was able to have a nice Christmas. He'll have a chemo-brain New Year, but at least he's moving forward again.
Dr. B did reduce the dose of Oxaliplatin. We'll see if it makes a difference in the side effects. He's pretty wiped out tonight, but that's normal for this point in the treatment.
The kids went in with us today. While we waited for Marc to be checked in, I rode the tram up the hill and back down with Rose (no crowds). Brett had no interest, but Rose wanted to ride so off we went. When we returned, Marc was checked in and they had drawn his blood. He came out (Rose is too young to be in the infusion room so she and I were in the waiting room) with a big grin - he was 1.9. Brett and Rose both had gift certificates to Everyday Music so we took the streetcar across town while Marc had his treatment. It was very quiet in town. The slow holiday retail sales seemed to be continuing today. It was nice for us - no crowds.
Somehow this blog about Marc's disease has come to include more than just what is happening with Marc's treatment. Since the last blog I've done report cards (they went home the 10th), had a major repair done on the car (catalytic converter went out), traveled to Walla Walla for mom's memorial service (the 15th), hosted our family Christmas (18 on Saturday/Sunday), and had a quiet family Christmas (just us Christmas Eve - Mike, Steph and Masen joined us on Christmas day for dinner).
Report cards are my least favorite part of teaching - one of my least anyway. They take forever and I'm not sure the parents have any clearer idea of how their child is doing than before the hours of work.
While I was swamped in report cards my sister planned mom's service with input from us and some writing/editorial help from my sister-in-law. They did a beautiful job. If you happen to lose someone dear and need to see a program example that will knock your socks off, let me know. Donna created a trifold program. The entire inside was an expanded obituary with pictures. The front had mom's picture, name, etc. The flap you saw when you first open it had the order of the service and the back had a list of things "Grandma Loved." It was perfect.
Mom would have been pleased with the service. We know because we kept thinking, "I wish mom were here. She'd like this." Brett played Amazing Grace on his guitar. My cousin John read the even more expanded obituary. Two ladies sang a medly of children's songs like Jesus Loves Me, This Little Light of Mine, etc., as a tribute to the years mom spent working with the babies at church. Greg, a friend of my brother's, sang the last song. I didn't recognize it from the title and the title is escaping me right now, but I knew it when I heard it. Mom's dear friend Eunice put her head in my brother's lap and sobbed. What an amazing tribute to the lasting strength of friendship. Even now, it brings tears to my eyes to think of it.
We all grieve in our own way. My siblings and I had been through Alzheimer's with mom - from the beginning when she began to forget little things to the day she died with family and friends by her side that she no longer knew. Our pain is different than the pain of friends who knew her and shared the laughter and tears that only girlfriends can share. Mom's girlfriends were true to her through it all. Mary Ellen and Martha visited mom regularly even through her final months when it was so painful to see her vacant stare or her anxious running or her own tears of grief when she was aware enough to understand how far along her disease had progressed. Eunice lived further away. Even so when she was in town, she would stop in and see mom. There were others who were faithful to mom as well - Aunt Hilda, Bea, and other College Place friends. Our family is eternally in their debt for being close and comforting her through it all.
Christmas was a whirlwind. My siblings and their families were here last weekend. We missed Jennifer and Kim, two of my nieces, but maybe next year they can join us too. We laughed and ate and laughed some more. It was good to be together. I'm hoping Christmas brought as much joy to your family as it did to ours. We are counting the days till 2007 is over and we can start fresh in 2008. We're holding out for bliss.
Wednesday, December 5, 2007
Round 8 Take 3
Marc's numbers were up. He needs to be 1.5 and he had gone from 1.4 to 1.6. Not as much as in the past, but we'll take it. He's looking forward to being finished - four more treatments. Next appointment is on the 19th.
In all my spare time, I read Rhett Butler's People. If you are a fan of Gone with the Wind, you must read this book. I love the movie, but have never read the original book. I know, I know it's a classic.... So, now it's on my Christmas list. Sometimes I do things backwards.
It's report card time. Ick. Assessments take so much time. It's good though. I have so many kids who scored so much higher on their insect post-test. Some of the answers were so cute. In the pre-test, one boy labeled the grasshopper's nes(knees). Did you know grasshoppers have knees? In the post-test in answer to how you know something is an insect, one boy wrote "if it has sexe (six) legss." His mom will laugh - she's a teacher. My favorite is in answer to what a "life cycle" is - one boy wrote "haw (how) he graws (grows) up." AWWW, so cute. He was one of my most improved 6/18 to 15/18.
In all my spare time, I read Rhett Butler's People. If you are a fan of Gone with the Wind, you must read this book. I love the movie, but have never read the original book. I know, I know it's a classic.... So, now it's on my Christmas list. Sometimes I do things backwards.
It's report card time. Ick. Assessments take so much time. It's good though. I have so many kids who scored so much higher on their insect post-test. Some of the answers were so cute. In the pre-test, one boy labeled the grasshopper's nes(knees). Did you know grasshoppers have knees? In the post-test in answer to how you know something is an insect, one boy wrote "if it has sexe (six) legss." His mom will laugh - she's a teacher. My favorite is in answer to what a "life cycle" is - one boy wrote "haw (how) he graws (grows) up." AWWW, so cute. He was one of my most improved 6/18 to 15/18.
Thursday, November 29, 2007
Round 8 Take 2
Marc's count was low again yesterday. It had come up from 1.0 to 1.4, but needs to be 1.5. He's fighting a bit of a cold. It seemed to be better yesterday, but this morning he it is back.
The new stove was delivered. We love it.
Betsy
The new stove was delivered. We love it.
Betsy
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