What a process. After numerous tests, scans, ultrasounds and MRIs we are finally on the transplant waiting list. However there are still three more tests to get through this next week in order to get the exception to the MELD score to account for the cancer. If I haven't touched on that before, you have your basic score determined by liver function in this case, that score is 8 right now. Which shows the treatments have been helping because when we started this it was 11. So basically he is getting healthier. If not for the cancer he would not even be considered for a transplant. With the cancer they have to determine that it's large enough but not too big, because that would increase the likelihood that it has spread, if all clears he would be increased on his MELD to 22 putting him up near the top of the list. There is no sure way to know the cancer is gone by treatment alone. How much simpler life would be if this had been caught or taken care of before the cancer developed.
Now we are closely checking his sister and brothers in hopes of keeping them from going through this process.
When the time comes for transplant he will spend a week to 10 days in the hospital followed by 2-3 months recovery. One bit of good news was that his body finally produced an immunity to the HEP B virus so hopefully that will eliminate a gamma globulin (sp?) infusion since there wont be the risk of his body infecting the new liver. A great thing but would have been fantastic before all this other crap developed.
On to the regular ordinary life stuff. Only two weeks of school left. Jazz concert tonight at middle school. This will be our last band concert since our youngest says she is quitting band. On to guitar concerts next year. We will also be marching in the Jr Rose Festival parade with our combined 7th/8th grade bands this next week. Fun.
Cindy & Heidi thanks for the emails, I'm not doing real well at responding. Busy. Not a good excuse but there ya go. I've gotten information about the upcoming class reunion but not sure where I'll be at that point so I'm holding off responding.
I had a job interview this week and thought it went really well. I am really hoping this works out. It's working for a non-profit organization that arranges repairs for elderly or disabled folks who can't otherwise afford them. Keeps me working with housing but allows me to help people and make a difference. This dog eat dog world of real estate will chew you up after a while. The part I enjoy is working with people so I am hoping this new job will help me find that fulfillment. Not as much money but steady and worthwhile. There is more to this world than paying taxes.
Overall we are doing pretty good right now.
Hope you are too.
Thursday, May 29, 2008
Friday, May 16, 2008
Suns out, Happy Anniversary
Today we are celebrating our 21st Wedding anniversary. Amazing how time flies.
Sun has finally hit the great Northwest and today will be in the mid to high 90's. No complaints from me, I am sick of rain. I went out for a nice walk and enjoyed all the flowers, squirrels out playing and some good music on the Ipod.
The latest on Wade. This week we learned he is seriously low on Vitamin D. Who knew? The average minimum should be 30 (30 what I don't know) a reading of 15-20 is considered very low and his is only 12. So another prescription strength supplement to take along with the calcium. We are still looking into the role of vitamin D and what issues being so low could cause. The calcium and bone density issues were to strengthen the bones since even a fracture could toss him off the transplant list.
As for the list. We have finally gotten all the tests done, taking all the supplements and the file has been sent to the insurance for review and approval. This can take one to two weeks depending on the insurance co. Once they have that he will be put on the active list and will start carrying a beeper.
With all that going on and all this sitting and waiting for the next direction some things are just getting stagnant. I haven't ever really loved the real estate business, I love helping people get into a home of their own but not really the business end of it. I've always volunteered and given away a lot of my time to the many worthy causes out there and often said if I could make just a small paycheck doing that it would be perfect. Well, I'm trying not to get my hopes too high but I applied for a job with a local organization, REACH Community Development. They have a large real estate portfolio of apartments and single family homes that they manage for very low income or disable residents. They help these folks handle repairs and safety issues that might not otherwise be taken care of and enable them to stay in a home thus keeping them from becoming homeless. They also offer support services to educate people on how to manage their finances to stay on top of their bills, cook good foods to save money and stay healthy. There is a lot of community involvement and that would be part of the duties, arranging volunteer events etc. I am really excite at the prospect and think my experiences could be put to good use.
So, keeping the good thought on that one.
We can't just keep living to serve the cancer, waiting to run her, run there...
I have faith it will all work out. The girls are doing great, band concert at the High School last night, Middle school next Thurs then the Jazz at Middle the Thurs after that. So busy with end of year celebrating.
Blue sky and sunshine, it's all good today.
Sun has finally hit the great Northwest and today will be in the mid to high 90's. No complaints from me, I am sick of rain. I went out for a nice walk and enjoyed all the flowers, squirrels out playing and some good music on the Ipod.
The latest on Wade. This week we learned he is seriously low on Vitamin D. Who knew? The average minimum should be 30 (30 what I don't know) a reading of 15-20 is considered very low and his is only 12. So another prescription strength supplement to take along with the calcium. We are still looking into the role of vitamin D and what issues being so low could cause. The calcium and bone density issues were to strengthen the bones since even a fracture could toss him off the transplant list.
As for the list. We have finally gotten all the tests done, taking all the supplements and the file has been sent to the insurance for review and approval. This can take one to two weeks depending on the insurance co. Once they have that he will be put on the active list and will start carrying a beeper.
With all that going on and all this sitting and waiting for the next direction some things are just getting stagnant. I haven't ever really loved the real estate business, I love helping people get into a home of their own but not really the business end of it. I've always volunteered and given away a lot of my time to the many worthy causes out there and often said if I could make just a small paycheck doing that it would be perfect. Well, I'm trying not to get my hopes too high but I applied for a job with a local organization, REACH Community Development. They have a large real estate portfolio of apartments and single family homes that they manage for very low income or disable residents. They help these folks handle repairs and safety issues that might not otherwise be taken care of and enable them to stay in a home thus keeping them from becoming homeless. They also offer support services to educate people on how to manage their finances to stay on top of their bills, cook good foods to save money and stay healthy. There is a lot of community involvement and that would be part of the duties, arranging volunteer events etc. I am really excite at the prospect and think my experiences could be put to good use.
So, keeping the good thought on that one.
We can't just keep living to serve the cancer, waiting to run her, run there...
I have faith it will all work out. The girls are doing great, band concert at the High School last night, Middle school next Thurs then the Jazz at Middle the Thurs after that. So busy with end of year celebrating.
Blue sky and sunshine, it's all good today.
Saturday, May 10, 2008
catching up with what's been happening
Time sure flies. So much has happened in the past three weeks and I find myself just wanting to stop and be with the kids or do little of nothing.
We just got home from Veg Fest in Portland. Interesting, lots of good things. I don't see myself ever becoming a full vegetarian but we are trying to embrace a healthier lifestyle. No red meat in the house. More veggies, lots of fruit. Wade is reading the China Study which is a huge study done in China focusing on the people, their homes, work, and mostly Diet to see what contributes to cancer and other diseases. Or if a change in diet can reduce the likely hood of your getting cancer. It's a compelling read taken in small doses.
OK, since April 19th, I'll have to get the calendar.
Wade celebrated his 48th Birthday. Went to the band meeting and celebrated the great year our High School Drum Line had, for my older daughter (16). Listed a house in Lake Oswego.
Then on the 23rd we arrived at OHSU about 6:40 am to wait, get checked in and sent upstairs, to Wait... The honestly give you a restaurant pager and it will buzz when we are ready to check you in up here, it'll be about an hour. So we did a few flights of stairs and hung out for a while. Once checked in they go over the procedure for Chemo Embolization and sign all the consents. The actual procedure went pretty quickly, hour and a half. They went into an artery in his leg up into the Liver. Using ultra sound images they attempt to insert the chemo mixture right onto the tumor. Unfortunately they weren't able to distinguish the upper tumor so they put chemo on the entire right lobe. They tell us the normal cells are not usually affected by the chemo and the mixture will stick to the cancer cells because of the way it's formulated. The rest will wash out of the liver. Some people will have mild side affects, nausea, tiredness, sort of flu like symptoms. Wade was very fortunate to have little affect. The worst was having to stay the night and be woke up by the nurses all night. He stayed at the VA Hospital which is next door to OHSU and shares a floor with them. What a depressing place that is.
So overall the treatment had little to no side affects and Wade is able to resume his workouts and keeps working his regular schedule. We continue to work at the issues keeping him from the transplant list. They don't make it easy. You really have to push and advocate for yourself. Even our regular Dr that we are sent back to for immunizations and minor tests is giving us the run around. You would think if the transplant coordinator needed a test result they could take the time to fax it over... So we have been scanning and faxing and calling and finally making progress. At this point we think everything has been cleared so hopefully his file will go into the review meeting this week. If that is cleared they will get the pre-auth from the insurance and put him on the waiting list.
If we are still waiting come the 5th of June he will go in for the second treatment. If there are no complications he wont have to stay overnight. These treatments are usually done three times then they would take another scan to determine the affect.
When we are not mobbed with medical issues life is pretty normal. There are friends and family members that know what's going on. The girls are still not telling their friends which is ok if that works for them. I pointed out that when we do reach the transplant stage and Dad has to wear a mask I think they will be asking but they'll deal with that when it happens they say. Our younger daughter is having friends over tonight and mentioned that one boy had missed school because he had a fever. This was a first to say he can't come over. We really need to keep Dad healthy as best we can.
This week there is a HS concert and Morgan is sitting in with a group of her classmates at a large church celebration. Pretty cool, they will play with the church band and full choir. I am looking forward to that.
I haven't communicated with my father in a while but I don't hear good things about his treatment. It's unfortunate that our relationship fell apart so many years ago. But now I have my own little family to take care of. I keep expecting to get one of those phone calls any day now. Sad but I mourned the loss for too many years already that I'm not going back into it.
Not sure why I'm compelled to add that, maybe just for myself. I acknowledge my own faults but don't agree with his choices and don't feel at all responsible for where he is now.
I have just gotten a book by Deepak Chopra, Fire in the Heart, A spiritual guide for Teens. Just starting it. I'm hoping it might open some interesting conversations in the house. I want to read it first so I know where he's coming from. I seem to be getting more open to new ideas and possibilities lately. I hope anyway. You just never know where life is taking you till you get there. Still feeling blessed and keeping a positive outlook.
We just got home from Veg Fest in Portland. Interesting, lots of good things. I don't see myself ever becoming a full vegetarian but we are trying to embrace a healthier lifestyle. No red meat in the house. More veggies, lots of fruit. Wade is reading the China Study which is a huge study done in China focusing on the people, their homes, work, and mostly Diet to see what contributes to cancer and other diseases. Or if a change in diet can reduce the likely hood of your getting cancer. It's a compelling read taken in small doses.
OK, since April 19th, I'll have to get the calendar.
Wade celebrated his 48th Birthday. Went to the band meeting and celebrated the great year our High School Drum Line had, for my older daughter (16). Listed a house in Lake Oswego.
Then on the 23rd we arrived at OHSU about 6:40 am to wait, get checked in and sent upstairs, to Wait... The honestly give you a restaurant pager and it will buzz when we are ready to check you in up here, it'll be about an hour. So we did a few flights of stairs and hung out for a while. Once checked in they go over the procedure for Chemo Embolization and sign all the consents. The actual procedure went pretty quickly, hour and a half. They went into an artery in his leg up into the Liver. Using ultra sound images they attempt to insert the chemo mixture right onto the tumor. Unfortunately they weren't able to distinguish the upper tumor so they put chemo on the entire right lobe. They tell us the normal cells are not usually affected by the chemo and the mixture will stick to the cancer cells because of the way it's formulated. The rest will wash out of the liver. Some people will have mild side affects, nausea, tiredness, sort of flu like symptoms. Wade was very fortunate to have little affect. The worst was having to stay the night and be woke up by the nurses all night. He stayed at the VA Hospital which is next door to OHSU and shares a floor with them. What a depressing place that is.
So overall the treatment had little to no side affects and Wade is able to resume his workouts and keeps working his regular schedule. We continue to work at the issues keeping him from the transplant list. They don't make it easy. You really have to push and advocate for yourself. Even our regular Dr that we are sent back to for immunizations and minor tests is giving us the run around. You would think if the transplant coordinator needed a test result they could take the time to fax it over... So we have been scanning and faxing and calling and finally making progress. At this point we think everything has been cleared so hopefully his file will go into the review meeting this week. If that is cleared they will get the pre-auth from the insurance and put him on the waiting list.
If we are still waiting come the 5th of June he will go in for the second treatment. If there are no complications he wont have to stay overnight. These treatments are usually done three times then they would take another scan to determine the affect.
When we are not mobbed with medical issues life is pretty normal. There are friends and family members that know what's going on. The girls are still not telling their friends which is ok if that works for them. I pointed out that when we do reach the transplant stage and Dad has to wear a mask I think they will be asking but they'll deal with that when it happens they say. Our younger daughter is having friends over tonight and mentioned that one boy had missed school because he had a fever. This was a first to say he can't come over. We really need to keep Dad healthy as best we can.
This week there is a HS concert and Morgan is sitting in with a group of her classmates at a large church celebration. Pretty cool, they will play with the church band and full choir. I am looking forward to that.
I haven't communicated with my father in a while but I don't hear good things about his treatment. It's unfortunate that our relationship fell apart so many years ago. But now I have my own little family to take care of. I keep expecting to get one of those phone calls any day now. Sad but I mourned the loss for too many years already that I'm not going back into it.
Not sure why I'm compelled to add that, maybe just for myself. I acknowledge my own faults but don't agree with his choices and don't feel at all responsible for where he is now.
I have just gotten a book by Deepak Chopra, Fire in the Heart, A spiritual guide for Teens. Just starting it. I'm hoping it might open some interesting conversations in the house. I want to read it first so I know where he's coming from. I seem to be getting more open to new ideas and possibilities lately. I hope anyway. You just never know where life is taking you till you get there. Still feeling blessed and keeping a positive outlook.
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