Well, once again we are on hold. Marc's white count was too low for treatment again today. The new wonder drug didn't seem to make a difference.
The first time he took the wonder drug, we weren't sure if it was the drug that brought the white count up or if it was the fact that he was a month from his last treatment. Now it seems that it was time alone that took care of the white count.
Needless to say, Marc is discouraged.
This pushes his end date into February. Last I heard we were three days short of having enough shared leave to get us through December. I continue to marvel at the generosity of our coworkers.
The doctors are looking into some alternatives. Marc's mom found something on-line that he talked to them about. They had heard of it and are checking to see if it will interfere with anything he is already taking.
Brett has joined the cell phone age. It was time to renew our contract on our cell phones. Since he turned 16 and will get his license soon, we added him to our plan. Marc and I both have new phones as well and are thrilled with the changes in technology. Our old ones were outdated and horrible. Once again - Rose is ticked off! She actually took this better. She must be getting used to being told her turn is coming.
Steph, Mike and Masen came over Sunday. We had dinner, played in the leaves, and carved pumpkins. It was so fun. (Wow - that's a sentence right out of my second graders writing folders...)
We are blessed with family and friends who continue to support us in a myriad of ways. We don't understand why Marc's counts continue to be low, but as with everything, things will work out.
Wednesday, October 31, 2007
Thursday, October 18, 2007
Round 6 Take 3
Third time is definitely a charm. The new medicine worked wonders. Marc's blood counts were WAY up. He is currently getting his sixth treatment and as of Saturday when the pump comes off, he will be half finished with his chemo. If the new drug continues to work, we will not have the low white count issue. But, if we have learned anything in this process it is that things rarely work the same way for long before changing or something new popping up.
Marc is both happy and bummed that the new medicine worked so well. Now he gets to keep using it. Not only is it an injection which he hates, but the side effect he experiences from it is extreme muscle pain - in his back. He has been moving like an old man. I've encouraged him to take something for the pain. This time it is a good thing he doesn't want to. He can't. He's on blood thinner. They don't want him taking Motrin and especially not Aspirin. So, he just has to tough it out.
We continue to be blessed with friends, like Carol today, who are willing to take Marc down to OHSU so I can continue to teach. I was stressed this morning since the last two times hadn't gone so well and was wondering out loud if I should take Marc's chemo days off and just go with him. My friend/co-teacher asked if I had enough sick leave to do that. I do. It's just that if something dreadful comes up, I want to have sick leave to cover. If I use all my sick leave on routine appointments, then I'll be in a pinch. As it worked out, Marc was able to have treatment and finished about 20 minutes before I arrived to pick him up. Good timing today.
My nose is feeling better. No more nose bleeds so I guess it can be called a success. It hurt way worse and for way longer than expected. I have a greater sympathy for Marc's back pain.
Rose has a swim meet in Hood River this weekend. She's a bit nervous as she hasn't competed since July. She has to do the 100 meter freestyle, breast stroke, and butterfly. They didn't sign her up for back stroke and that's her favorite. I overheard a parent at the pool last night saying his son was signed up for the 100 meter drown. Pretty funny as that's what it looks like when the beginners are doing the butterfly.
Brett is LOVING his new room. Rose was really ticked when we found out that he gets the networks on his TV with no cable or rabbit ears or anything. So far he's been quite responsible about getting enough sleep on school nights and has only watched football in there on the weekend. We are so blessed to have such great kids - teenagers at that. (Rose has been a teenager since about 10.)
With the extra injections that start 24 hours after chemo ends, Marc should be feeling better about Saturday of next week. His next chemo treatment is scheduled for the 31st.
Marc is both happy and bummed that the new medicine worked so well. Now he gets to keep using it. Not only is it an injection which he hates, but the side effect he experiences from it is extreme muscle pain - in his back. He has been moving like an old man. I've encouraged him to take something for the pain. This time it is a good thing he doesn't want to. He can't. He's on blood thinner. They don't want him taking Motrin and especially not Aspirin. So, he just has to tough it out.
We continue to be blessed with friends, like Carol today, who are willing to take Marc down to OHSU so I can continue to teach. I was stressed this morning since the last two times hadn't gone so well and was wondering out loud if I should take Marc's chemo days off and just go with him. My friend/co-teacher asked if I had enough sick leave to do that. I do. It's just that if something dreadful comes up, I want to have sick leave to cover. If I use all my sick leave on routine appointments, then I'll be in a pinch. As it worked out, Marc was able to have treatment and finished about 20 minutes before I arrived to pick him up. Good timing today.
My nose is feeling better. No more nose bleeds so I guess it can be called a success. It hurt way worse and for way longer than expected. I have a greater sympathy for Marc's back pain.
Rose has a swim meet in Hood River this weekend. She's a bit nervous as she hasn't competed since July. She has to do the 100 meter freestyle, breast stroke, and butterfly. They didn't sign her up for back stroke and that's her favorite. I overheard a parent at the pool last night saying his son was signed up for the 100 meter drown. Pretty funny as that's what it looks like when the beginners are doing the butterfly.
Brett is LOVING his new room. Rose was really ticked when we found out that he gets the networks on his TV with no cable or rabbit ears or anything. So far he's been quite responsible about getting enough sleep on school nights and has only watched football in there on the weekend. We are so blessed to have such great kids - teenagers at that. (Rose has been a teenager since about 10.)
With the extra injections that start 24 hours after chemo ends, Marc should be feeling better about Saturday of next week. His next chemo treatment is scheduled for the 31st.
Thursday, October 11, 2007
Round 6 Take 2
I'm sitting here trying to figure out how to start this blog entry. We teach kids that they need to start their writing with a sentence/paragraph that will grab the readers and draw them in - it's just not working for me tonight. If I start with the bad, does it sound pessimistic? If I start with the good, does it sound too Pollyanna-ish? The other thing we teach kids about writing is that you just start and somehow it gets you going and then you figure it out. Well, here we are a paragraph into this and you still don't have any information...
Let's start with the bad/frustrating. Marc's white count was lower today than it was last week. This is a major disappointment to him. Because he was 1.4 last time and needed to be 1.5, he fully expected to be able to have his chemo treatment today. I guess that's not how it works. I asked the nurses if it could be lower because the kids and I are back at school and are bringing germs home. They said definitely no. It is caused by the chemo. This was reassuring to me and frustrating to Marc. I feel better that I am not delaying his treatment and he wants to have a reason for the delay that we can do something about - although I'm not sure how we'd completely keep germs out of the house.
Yesterday Marc had a call from one of the nurses at OHSU. She told him that they want to start him on a new drug to help keep his white count up. We had talked about this drug in the past, but couldn't take it because of the study that Marc is in. We were both surprised that they were suggesting that he take it now. Dr. B debated about it, according to Paula, but decided it is what is best for Marc. The study would like to have patients not use this drug, but it doesn't stipulate that he has to drop out of the study if Dr. B decides he needs it. It is called Neupogen and is supposed to help his body make white cells. Marc felt yesterday that it was "going backward" to take more drugs. I think today he realizes that it could help him get through this process faster and get back to his regular life.
Now for the good news. Our co-pay for this prescription is $20. It is five syringes of medication. One a day for five days. He hates the fact that it is in a syringe and he has to poke himself again. Without insurance the five syringes of medication would have been $2081.75. We are ever thankful for medical insurance.
I had a dr. appointment myself today so was able to go with Marc to chemo - or not chemo as it turned out. Last week I had 5 nosebleeds. A couple years ago I had a very severe sinus infection and went to an ENT. Dr. Thomas is wonderful, but I hate going to him. It usually ends up being painful. Today was no exception. He put a scope up my nose and found the cause at least I hope this was the cause. It was the predictable blood vessel too close to the surface. (...and here I thought it might be stress - Dr. Thomas said the nose never bleeds from stress) It had healed fine between the last nosebleed on Saturday and today, but he cauterized it just to make sure. If you haven't had the lining of your nose cauterized before, thank your lucky stars. I'm sure it isn't in the league with chemo, but it hurts. Thankfully he was able to report there is nothing out of the ordinary up there. I've never been so thankful to be ordinary!
Oh, another good note. Marc has enough shared leave to cover through part of November. It just keeps trickling in as people fill out the paperwork to donate. This is fabulous since now it is looking like he won't be back to work until mid to late February.
Thanks for the notes of encouragement and prayers. They sustain us daily.
Betsy
Let's start with the bad/frustrating. Marc's white count was lower today than it was last week. This is a major disappointment to him. Because he was 1.4 last time and needed to be 1.5, he fully expected to be able to have his chemo treatment today. I guess that's not how it works. I asked the nurses if it could be lower because the kids and I are back at school and are bringing germs home. They said definitely no. It is caused by the chemo. This was reassuring to me and frustrating to Marc. I feel better that I am not delaying his treatment and he wants to have a reason for the delay that we can do something about - although I'm not sure how we'd completely keep germs out of the house.
Yesterday Marc had a call from one of the nurses at OHSU. She told him that they want to start him on a new drug to help keep his white count up. We had talked about this drug in the past, but couldn't take it because of the study that Marc is in. We were both surprised that they were suggesting that he take it now. Dr. B debated about it, according to Paula, but decided it is what is best for Marc. The study would like to have patients not use this drug, but it doesn't stipulate that he has to drop out of the study if Dr. B decides he needs it. It is called Neupogen and is supposed to help his body make white cells. Marc felt yesterday that it was "going backward" to take more drugs. I think today he realizes that it could help him get through this process faster and get back to his regular life.
Now for the good news. Our co-pay for this prescription is $20. It is five syringes of medication. One a day for five days. He hates the fact that it is in a syringe and he has to poke himself again. Without insurance the five syringes of medication would have been $2081.75. We are ever thankful for medical insurance.
I had a dr. appointment myself today so was able to go with Marc to chemo - or not chemo as it turned out. Last week I had 5 nosebleeds. A couple years ago I had a very severe sinus infection and went to an ENT. Dr. Thomas is wonderful, but I hate going to him. It usually ends up being painful. Today was no exception. He put a scope up my nose and found the cause at least I hope this was the cause. It was the predictable blood vessel too close to the surface. (...and here I thought it might be stress - Dr. Thomas said the nose never bleeds from stress) It had healed fine between the last nosebleed on Saturday and today, but he cauterized it just to make sure. If you haven't had the lining of your nose cauterized before, thank your lucky stars. I'm sure it isn't in the league with chemo, but it hurts. Thankfully he was able to report there is nothing out of the ordinary up there. I've never been so thankful to be ordinary!
Oh, another good note. Marc has enough shared leave to cover through part of November. It just keeps trickling in as people fill out the paperwork to donate. This is fabulous since now it is looking like he won't be back to work until mid to late February.
Thanks for the notes of encouragement and prayers. They sustain us daily.
Betsy
Wednesday, October 3, 2007
Round 6 Take 1
Marc went in for his sixth round of chemo today. One of his blood count numbers has to be 1.5 for treatment. It was 1.4. Bummer. He's rescheduled for next Thursday. Marc's other major disappointment today was that one of the nurses told him that many patients who get blood clots end up staying on the medication for an extended amount of time. Some have to take it indefinitely. The difficulty this presents for Marc is that he is not allowed to participate in any contact sports of any kind while on the blood thinner. The news today brought home the reality that it could be a very long time before he spars or grapples again, if ever. He is struggling emotionally with accepting one more major blow.
On the other hand, Marc and Brett had a wonderful time at camp. I guess Brett's "guard duty" was at 2 a.m. one night and 3 a.m. the other. Marc didn't have night duty as he wasn't a participant. Marc was able to help teach knife throwing. He also used the time observe teaching strategies. Brett loved it all.
Both commented on the new office area and Brett is quite excited about getting moved into his new room. We will be scrubbing wallpaper glue off this weekend...
It's a good thing I used to teach first grade. I'm about finished with my reading assessments - finally - and I have kids in every level from C-F (beginning to mid first grade). I then have some at H, J (beginning second), K, and above L (beginning third grade). I'm a bit overwhelmed with planning for that much diversity.
Thanks for the continued prayers of support. We had no idea the enormity of all of this when we started.
On the other hand, Marc and Brett had a wonderful time at camp. I guess Brett's "guard duty" was at 2 a.m. one night and 3 a.m. the other. Marc didn't have night duty as he wasn't a participant. Marc was able to help teach knife throwing. He also used the time observe teaching strategies. Brett loved it all.
Both commented on the new office area and Brett is quite excited about getting moved into his new room. We will be scrubbing wallpaper glue off this weekend...
It's a good thing I used to teach first grade. I'm about finished with my reading assessments - finally - and I have kids in every level from C-F (beginning to mid first grade). I then have some at H, J (beginning second), K, and above L (beginning third grade). I'm a bit overwhelmed with planning for that much diversity.
Thanks for the continued prayers of support. We had no idea the enormity of all of this when we started.
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