This weekend has been a departure from the normal routine around here. Marc and Brett are in Arizona at a martial arts camp. They have looked forward to it for two years. The big question looming over us since Marc's diagnosis has been - would he get to go to camp? The answer was yes. He was so excited. He and Brett flew to Phoenix on Wednesday.
Not only has this been an incredible experience for he and Brett to enjoy together, it has been a chance for him to get away from the daily reminder that he is dealing with cancer treatments. He hasn't had to sit at home while the rest of us go off to school and/or work. More details on the trip when they get home and tell us all their stories.
Rose and I have been working our tails off at home. Last week, I worked a bit extra at school and Rose caught up on some homework from when she stayed home sick on Monday. By the end of the week, Rose was feeling awful again. I took her to the dr. on Friday. He didn't think she had strep, but swabbed her anyway when I mentioned that I wanted to get her checked so if it was strep she could begin treatment and not be contagious by the time Marc got home on Tuesday. We'll hear Monday. He did the longer lab test so it would be more reliable. She's feeling better already so I'm sure it isn't strep.
I have cleared out the office - with the help of Donna. Steph drove down the gorge and picked her up. She and Dick have been spending time near Goldendale. Donna spent the last two days here with us. She helped me peel wallpaper border out of the old office, organize the office area in the loft, and was just a general all around adviser for what needed to be kept and what could be pitched. I have five grocery bags of papers for recycling! We went to IKEA and got some great organizing boxes to put on the bookshelves to sort all the mail into (one for each family member plus a couple extra) and some magazine boxes for magazines and specialty printer paper and labels. We also have a big box for things to shred - Rose's new way of making an extra buck or two. We even found a map of Priest Lake that I tacked up over the computer.
When Brett gets back he'll help me paint the office and move all his stuff in there. We decided that one of the privileges of turning 16 was to have the biggest room. He'll also get to have the TV with his game system in his room. No cable, but he'll have a DVD/VCR. Rose is pretty ticked. Bummer to be younger sometimes. It all started when we moved the music stuff into the living room. We ended up moving the couch we had here in the loft downstairs so there wasn't any seating for the tv with the game system. By moving it into his room we have more space in the loft for the exercise equipment and he and Marc have a comfortable place to play games. Besides then they can shut the door and we don't have to listen to it!
We are uncertain what will end up in his old room. It is a the end of the loft and the smallest of the bedrooms. We thought it was the same size as Rose's, but it seems smaller now that his stuff is in there. I have my eye on it for a sewing/guest room. Come visit us so I can have a great reason to make it into a guest room!
Marc's next chemo is Wednesday. His coag numbers have been in range and Sara from the anti-coag clinic has been pleased. That's always a good thing! I'll be posting again as he goes through his next round. September has been rough dealing with finding the right dosage for the anti-coag meds, getting back to school, and the stress of not knowing about this camp. Hopefully October will be routine and smooth sailing.
Sunday, September 30, 2007
Thursday, September 20, 2007
Round 5
There really isn't a great fraction for this treatment. 5/12ths doesn't have the ring to it that 1/4 and 1/3 had. Next treatment though will mark the 1/2 way point!
After a rocky few weeks, things have settled back into more of a routine. Marc gets his blood drawn about once a week for the anti-coag clinic. Now that we are regulars we don't have to call it the Anti-coagulation clinic - we just say anti-coag. Cool, huh?! The last two draws his numbers have been in range and he is simply maintaining his meds and wearing his support stockings.
This round of chemo seems rather routine, yucky, but routine. Marc's wiped out and his brain isn't functioning at its regular capacity. Rose called me for help with math homework - that indicates things aren't normal for sure. Fortunately, we made it through this lesson. He needs to get well for the hard stuff.
Marc is still on the anti-nausea research study drugs, but no longer has to fill out a journal for that study. What a blessing. I was afraid he'd have to go to "standard of care" drugs for the remainder of his chemo, but he still gets the good stuff.
School is also settling into a routine. I take Rose and two friends to school on my way. Three 12 year old girls can be quite entertaining. One morning I was so distracted by their chatter that I drove right by their school. My friend Deb happened to be in the car behind me and called me to see if they were coming to school with us.
The team of teachers I have joined is wonderful. Sandy, John, Lorri, and Laura have all welcomed me with such graciousness. I feel truly blessed to be working with them. They have been working together for several years. Laura gives me practical advise like giving me a quick run down on the silk worms, meal worms, and milk weed bugs that were delivered to go with our science kit this week. Sandy continually surprises and entertains me with her fabulous sense of humor and grounded attitude about second graders and life in general. Lorri keeps us all organized and John has been a true encouragement to the new kid on the block. Come see us at the community open house on October 11th. (The school district web site has all the details.)
Donna and Dick are here for 10 days. It has been like the cavalry arriving. I took 1/2 of a personal day to hang out with her. It was nice to sit and relax for a while. Donna is helping me move and organize the office. We are moving the computer to the loft area and giving this larger bedroom to Brett as part of the benefit of turning 16. Rose was not happy about it at all but her turn is coming sooner than we can imagine.
Brett's birthday is Monday. He and Marc leave for Arizona for a martial arts camp next week. Marc will be an observer. They have been planning to go for 2 years. Marc will have his blood levels checked to make sure it is safe for him to fly. They will be gone about six days. While they are gone, I will take down the wallpaper border and paint so he can move into his new room when he gets back. He has been taking pictures of himself and photo shopping them with different backgrounds. I have about 5 of them as a screen saver at school. He's quite the talented kid.
Marc received enough shared leave to get through September. He won't have to go onto long-term disability until at least October. The lady at the district office said it trickles in for a bit as people fill out the paper work. We are praying more people take the time to donate. It makes such a difference for us!
Thanks for your continued support and prayers. Love to you all!
After a rocky few weeks, things have settled back into more of a routine. Marc gets his blood drawn about once a week for the anti-coag clinic. Now that we are regulars we don't have to call it the Anti-coagulation clinic - we just say anti-coag. Cool, huh?! The last two draws his numbers have been in range and he is simply maintaining his meds and wearing his support stockings.
This round of chemo seems rather routine, yucky, but routine. Marc's wiped out and his brain isn't functioning at its regular capacity. Rose called me for help with math homework - that indicates things aren't normal for sure. Fortunately, we made it through this lesson. He needs to get well for the hard stuff.
Marc is still on the anti-nausea research study drugs, but no longer has to fill out a journal for that study. What a blessing. I was afraid he'd have to go to "standard of care" drugs for the remainder of his chemo, but he still gets the good stuff.
School is also settling into a routine. I take Rose and two friends to school on my way. Three 12 year old girls can be quite entertaining. One morning I was so distracted by their chatter that I drove right by their school. My friend Deb happened to be in the car behind me and called me to see if they were coming to school with us.
The team of teachers I have joined is wonderful. Sandy, John, Lorri, and Laura have all welcomed me with such graciousness. I feel truly blessed to be working with them. They have been working together for several years. Laura gives me practical advise like giving me a quick run down on the silk worms, meal worms, and milk weed bugs that were delivered to go with our science kit this week. Sandy continually surprises and entertains me with her fabulous sense of humor and grounded attitude about second graders and life in general. Lorri keeps us all organized and John has been a true encouragement to the new kid on the block. Come see us at the community open house on October 11th. (The school district web site has all the details.)
Donna and Dick are here for 10 days. It has been like the cavalry arriving. I took 1/2 of a personal day to hang out with her. It was nice to sit and relax for a while. Donna is helping me move and organize the office. We are moving the computer to the loft area and giving this larger bedroom to Brett as part of the benefit of turning 16. Rose was not happy about it at all but her turn is coming sooner than we can imagine.
Brett's birthday is Monday. He and Marc leave for Arizona for a martial arts camp next week. Marc will be an observer. They have been planning to go for 2 years. Marc will have his blood levels checked to make sure it is safe for him to fly. They will be gone about six days. While they are gone, I will take down the wallpaper border and paint so he can move into his new room when he gets back. He has been taking pictures of himself and photo shopping them with different backgrounds. I have about 5 of them as a screen saver at school. He's quite the talented kid.
Marc received enough shared leave to get through September. He won't have to go onto long-term disability until at least October. The lady at the district office said it trickles in for a bit as people fill out the paper work. We are praying more people take the time to donate. It makes such a difference for us!
Thanks for your continued support and prayers. Love to you all!
Saturday, September 8, 2007
Above and Beyond
In the last blog, I think I worried everyone too much. Sorry. Yes, this is hard, but we are getting through it. We have as many gifts along the way as we have difficulties.
Our trip up the hill was a nightmare, but, wow, was it the right place to go. This last week Marc had to go every day to have blood drawn at Legacy hospital. On Wed. they drew extra at chemo so he didn't have two trips that day. Anyway, Sara from the anticoag clinic has been monitoring his information and talked to Marc on the phone on Thursday about a new plan for his meds.
Thursday was not the best day for Marc to process information as he was in the midst of chemo #4. I asked if he would be offended if I contacted Sara to get the information directly from her because I didn't understand what he was supposed to do.
Friday morning I emailed Sara requesting that she go over the plan with me. She emailed back asking me to call her before noon. Fortunately, my kids have a morning recess this year so I was able to try to reach her. We played a bit of phone tag, but about 11:40 we were able to talk. She was waiting for Marc's info to come from Legacy and hadn't gotten it yet. It would determine his weekend meds.
I called home and he hadn't left for the hospital yet. By the time he reached the hospital and had his blood drawn, Sara had already left OHSU for the day. When we talked, she gave me the plan for his meds in case she was unable to get his numbers before leaving home. The plan included going back onto the Lovenox shots through the weekend to get his number up. I guess up is a good thing. In this experience, sometimes you want numbers up and sometimes you want them down. Marc hates the Lovenox more than anything and I knew this would not be good news for him.
I went to Fred Meyer to pick up the new Lovenox prescription yesterday evening. While there, Sara called my cell phone. She had checked his latest numbers from home. His numbers were coming up. The new plan for Marc's meds only has him do the Lovenox through tonight. Three shots rather than five. Sara may not be warm and fuzzy or have the tenderest "bedside manner," but she is a gift. Her willingness to go above and beyond made a tough week end on a good note.
Marc's chemo this time initially hit him pretty hard. He has had times he feels well enough to mix up the cookie dough for cookies he was craving and times where he just doesn't have energy to do more than crash on the couch. His friend Georgia from martial arts has been another gift this week. She took him to OHSU for chemo and then took him to Legacy two days for blood draws. He is truly blessed to have friends like Georgia.
One other good note. We have fabulous insurance. When I picked up the Lovenox, it was $20 rather than the normal $10 we pay for prescriptions. When I questioned the guy, he said it was a name brand drug rather than generic. If we didn't have insurance the 10 syringes would have cost $911.11. I gave him the $20 and did just what my dad would have wanted me to do - I smiled and said thank you.
Our trip up the hill was a nightmare, but, wow, was it the right place to go. This last week Marc had to go every day to have blood drawn at Legacy hospital. On Wed. they drew extra at chemo so he didn't have two trips that day. Anyway, Sara from the anticoag clinic has been monitoring his information and talked to Marc on the phone on Thursday about a new plan for his meds.
Thursday was not the best day for Marc to process information as he was in the midst of chemo #4. I asked if he would be offended if I contacted Sara to get the information directly from her because I didn't understand what he was supposed to do.
Friday morning I emailed Sara requesting that she go over the plan with me. She emailed back asking me to call her before noon. Fortunately, my kids have a morning recess this year so I was able to try to reach her. We played a bit of phone tag, but about 11:40 we were able to talk. She was waiting for Marc's info to come from Legacy and hadn't gotten it yet. It would determine his weekend meds.
I called home and he hadn't left for the hospital yet. By the time he reached the hospital and had his blood drawn, Sara had already left OHSU for the day. When we talked, she gave me the plan for his meds in case she was unable to get his numbers before leaving home. The plan included going back onto the Lovenox shots through the weekend to get his number up. I guess up is a good thing. In this experience, sometimes you want numbers up and sometimes you want them down. Marc hates the Lovenox more than anything and I knew this would not be good news for him.
I went to Fred Meyer to pick up the new Lovenox prescription yesterday evening. While there, Sara called my cell phone. She had checked his latest numbers from home. His numbers were coming up. The new plan for Marc's meds only has him do the Lovenox through tonight. Three shots rather than five. Sara may not be warm and fuzzy or have the tenderest "bedside manner," but she is a gift. Her willingness to go above and beyond made a tough week end on a good note.
Marc's chemo this time initially hit him pretty hard. He has had times he feels well enough to mix up the cookie dough for cookies he was craving and times where he just doesn't have energy to do more than crash on the couch. His friend Georgia from martial arts has been another gift this week. She took him to OHSU for chemo and then took him to Legacy two days for blood draws. He is truly blessed to have friends like Georgia.
One other good note. We have fabulous insurance. When I picked up the Lovenox, it was $20 rather than the normal $10 we pay for prescriptions. When I questioned the guy, he said it was a name brand drug rather than generic. If we didn't have insurance the 10 syringes would have cost $911.11. I gave him the $20 and did just what my dad would have wanted me to do - I smiled and said thank you.
Wednesday, September 5, 2007
Nightmare on the Hill and Round 4
Sorry for the delay in posting. I know that I thought I'd get something posted over the long weekend, but just didn't. Long story follows...
Thursday we went to see Dr. Blanke for a follow up visit regarding Marc's blood clot(s). He was very helpful and was willing to answer any questions we had - much like before. Only about 30% of people on chemo develop blood clots. It does not change the long term prognosis at all. Dr. B went to get the report from Legacy Hospital online and decided to send us "up the hill" to the anticoagulation clinic as this is their specialty. We are learning about specialties we never knew existed. Dr. B is a wonderful dr., but this time he stretched my endurance to the limit.
Up the hill refers to taking the tram literally up the hill to OHSU hospital. We then had to cross the street to another building and find the anticoagulation clinic. Let me back up. Marc was unsure if he should be putting weight on the leg so was using his crutches - left over from his knee surgery many moons ago. The tram was not crowded on the way up, the weather was beautiful, and the scenery was amazing - as long as you didn't look down.
When we walked through the building and outside, we had to go down a flight of stairs to cross the street. The last time I had been on the hill was when my Uncle Alden died so that added an emotional layer to the trip. I had forgotten that the two buildings were linked by a skybridge, but wouldn't have known what level to find that on anyway as the hospital is built on a hill and you enter on the 9th floor. Confusing to say the least.
By the time Marc got down the stairs, across the street and into the other building he was exahausted. We then had to find an elevator to the 3rd floor and find check in 3. We managed to locate the correct place without much trouble. However, the girl at the desk was brand new. She had no idea who we were or why we were there. We thought someone down below had called and gotten us an appointment or at least told them we were coming. The girl at the desk went to get someone to deal with us (me really as Marc needed to sit down in the waiting area). The lady came out and kept saying "this is not a walk-in clinic." I tried to tell her we didn't mean to be walk-ins, but were sent there by a dr. Long story short, she took pitty on us and fit us in her schedule.
Marc has to be on Warfarin (generic for Coumadin) for at least three-six months maybe longer. It needs to be taken in the evening on an empty stomach, but at the same time each day. He needs to eat foods high in vitamin K consistently daily. Because it was a holiday weekend coming up - of course it was we had surgery right before Memorial Day, started chemo around the 4th of July, and now this at Labor day - he couldn't start taking the medicine that day, but had to wait till Saturday. Which meant he had to keep giving himself shots until yesterday (he hated this more than anything else he has had to do so far). The Warfarin takes a couple days to kick in. Then he has to have his blood tested five days in a row to make sure the dosage is correct. Then he has to have bloot tests weekly for the remainder of the time he is on the medication. It is trickier to regulate because of the chemo. She also gave Marc a prescription for compression stockings.
On the way back down the hill, there was a group of Japanese university students on the Tram with us. It was packed hot and I managed to hold it together, but for someone who hates heights and is claustrophobic, it was about all I could do to ride down.
Once back in the car we decided to pick up the stockings and get it taken care of all at the same time. The lady had recommended we go to a lingerie shop call Just Like a Woman. She said they take the time to measure and fit the stockings and have them in stock. It was a beautiful shop. They have pretty panties and bras and I may go back there someday myself. It is on Macadam about 10 minutes from the bottom of the tram. Stockings in hand, we headed for home.
I was an emotional wreck by the time we finished the day. My sister and friends did a nice job of picking up the pieces. Plus I was babysitting Masen that night so I got to play with a 20 month old and not think about anything else for a while.
Friday and the weekend are a blur of getting my classroom ready for 28 second graders and getting our two kids and myself ready for school to start. Most of the school shopping was done. We just needed to get groceries and take care of laundry. Marc went to Winco and I took Trader Joe's.
People keep asking about the kids. This is the classic answer. Monday night Rose and I were headed to Fred Meyer to pick up last minute things. She was going on and on about how she couldn't believe school was starting and summer was over. Then she said, "This has been a really uneventful summer." I burst out laughing.
My first day of school started out great. The kids actually know how to do things. I love second graders. All 28 of them. By the end of the day we were all tired and beginning to unravel. We lined up to go out front. There was a mob - I mean mob - of parents and siblings waiting to pick kids up. Remember this is a brand new school. We are putting together procedures as best we can without experiencing things first. I walked about 20 feet out of the building, turned and looked and all but about 3 or 4 of my kids had vanished into the crowd. It was horrifying. They all came back today so they must have been picked up by the right people. We did things a bit differently today and it was much better.
I did get a note in my box today to send home with the kids about curriculum night next Tuesday. Next Tuesday? The teachers will do two presentations that evening in their classrooms so parents can get to the classrooms of two kids. Really? This was news to me...seriously, can we please just try to get through the beginning of a year in a new school. Could we not have waited one more week? Oh well, what's the saying? In for a penny, in for a pound. or something like that... The technology makes it all worthwhile. Love the microphone system! The document camera! The computer that doesn't freeze multiple times daily. Ok, I'll do a curriculum night presentation twice. At least I already knew about the dedication/community open house in October. That one won't be a surprise.
Marc's 4th round of chemo was today. His friend Georgia, from martial arts, took him down. I picked him up when I finished school. It has hit hard and quickly this time. My sister ordered us a book from Amazon about cooking and eating during chemo. It has some helpful information and lots of yummy recipes in it.
I cannot say enough times that we would not make it through this without the support of each and every one of you. The roles you play are so vital. From the prayers to the logistical help. From the emails to the listening ears. You are our strength.
Thursday we went to see Dr. Blanke for a follow up visit regarding Marc's blood clot(s). He was very helpful and was willing to answer any questions we had - much like before. Only about 30% of people on chemo develop blood clots. It does not change the long term prognosis at all. Dr. B went to get the report from Legacy Hospital online and decided to send us "up the hill" to the anticoagulation clinic as this is their specialty. We are learning about specialties we never knew existed. Dr. B is a wonderful dr., but this time he stretched my endurance to the limit.
Up the hill refers to taking the tram literally up the hill to OHSU hospital. We then had to cross the street to another building and find the anticoagulation clinic. Let me back up. Marc was unsure if he should be putting weight on the leg so was using his crutches - left over from his knee surgery many moons ago. The tram was not crowded on the way up, the weather was beautiful, and the scenery was amazing - as long as you didn't look down.
When we walked through the building and outside, we had to go down a flight of stairs to cross the street. The last time I had been on the hill was when my Uncle Alden died so that added an emotional layer to the trip. I had forgotten that the two buildings were linked by a skybridge, but wouldn't have known what level to find that on anyway as the hospital is built on a hill and you enter on the 9th floor. Confusing to say the least.
By the time Marc got down the stairs, across the street and into the other building he was exahausted. We then had to find an elevator to the 3rd floor and find check in 3. We managed to locate the correct place without much trouble. However, the girl at the desk was brand new. She had no idea who we were or why we were there. We thought someone down below had called and gotten us an appointment or at least told them we were coming. The girl at the desk went to get someone to deal with us (me really as Marc needed to sit down in the waiting area). The lady came out and kept saying "this is not a walk-in clinic." I tried to tell her we didn't mean to be walk-ins, but were sent there by a dr. Long story short, she took pitty on us and fit us in her schedule.
Marc has to be on Warfarin (generic for Coumadin) for at least three-six months maybe longer. It needs to be taken in the evening on an empty stomach, but at the same time each day. He needs to eat foods high in vitamin K consistently daily. Because it was a holiday weekend coming up - of course it was we had surgery right before Memorial Day, started chemo around the 4th of July, and now this at Labor day - he couldn't start taking the medicine that day, but had to wait till Saturday. Which meant he had to keep giving himself shots until yesterday (he hated this more than anything else he has had to do so far). The Warfarin takes a couple days to kick in. Then he has to have his blood tested five days in a row to make sure the dosage is correct. Then he has to have bloot tests weekly for the remainder of the time he is on the medication. It is trickier to regulate because of the chemo. She also gave Marc a prescription for compression stockings.
On the way back down the hill, there was a group of Japanese university students on the Tram with us. It was packed hot and I managed to hold it together, but for someone who hates heights and is claustrophobic, it was about all I could do to ride down.
Once back in the car we decided to pick up the stockings and get it taken care of all at the same time. The lady had recommended we go to a lingerie shop call Just Like a Woman. She said they take the time to measure and fit the stockings and have them in stock. It was a beautiful shop. They have pretty panties and bras and I may go back there someday myself. It is on Macadam about 10 minutes from the bottom of the tram. Stockings in hand, we headed for home.
I was an emotional wreck by the time we finished the day. My sister and friends did a nice job of picking up the pieces. Plus I was babysitting Masen that night so I got to play with a 20 month old and not think about anything else for a while.
Friday and the weekend are a blur of getting my classroom ready for 28 second graders and getting our two kids and myself ready for school to start. Most of the school shopping was done. We just needed to get groceries and take care of laundry. Marc went to Winco and I took Trader Joe's.
People keep asking about the kids. This is the classic answer. Monday night Rose and I were headed to Fred Meyer to pick up last minute things. She was going on and on about how she couldn't believe school was starting and summer was over. Then she said, "This has been a really uneventful summer." I burst out laughing.
My first day of school started out great. The kids actually know how to do things. I love second graders. All 28 of them. By the end of the day we were all tired and beginning to unravel. We lined up to go out front. There was a mob - I mean mob - of parents and siblings waiting to pick kids up. Remember this is a brand new school. We are putting together procedures as best we can without experiencing things first. I walked about 20 feet out of the building, turned and looked and all but about 3 or 4 of my kids had vanished into the crowd. It was horrifying. They all came back today so they must have been picked up by the right people. We did things a bit differently today and it was much better.
I did get a note in my box today to send home with the kids about curriculum night next Tuesday. Next Tuesday? The teachers will do two presentations that evening in their classrooms so parents can get to the classrooms of two kids. Really? This was news to me...seriously, can we please just try to get through the beginning of a year in a new school. Could we not have waited one more week? Oh well, what's the saying? In for a penny, in for a pound. or something like that... The technology makes it all worthwhile. Love the microphone system! The document camera! The computer that doesn't freeze multiple times daily. Ok, I'll do a curriculum night presentation twice. At least I already knew about the dedication/community open house in October. That one won't be a surprise.
Marc's 4th round of chemo was today. His friend Georgia, from martial arts, took him down. I picked him up when I finished school. It has hit hard and quickly this time. My sister ordered us a book from Amazon about cooking and eating during chemo. It has some helpful information and lots of yummy recipes in it.
I cannot say enough times that we would not make it through this without the support of each and every one of you. The roles you play are so vital. From the prayers to the logistical help. From the emails to the listening ears. You are our strength.
Sunday, September 2, 2007
Test
This is a test blog to see if it is emailed to the "guinea pigs" on my yahoo group. My classroom is almost ready - thanks to the help of my family. Rose came and assembled things and made labels with my new label maker. I still had my $150 classroom fund left from last year and needed to have the receipts dated by the 31st so we went shopping on Friday and bought things for the new classroom. Worked out perfectly. Then today I went to WalMart and bought a few things out of this year's fund. It makes it seem like I have more money in my classroom fund. Some districts in the Seattle area have $1500 per year per classroom. Amazing differences even in the same state.
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