This week has been good all around.
Wade is feeling much better and while not at the gym for full workouts he's definitely moving. We heard last Thursday that the transplant board had reviewed his file and granted him the exception to his MELD score so he is now listed with a MELD of 22. This should put him at or near the top of the wait list. This is a good thing but puts us back on the pins and needles in that it could happen at any time. Rather than let that rule the world we are enjoying the sun that is finally here and some time with the girls.
Second bit of good news. Wade is doing well and in great spirits. He met with the cancer Dr on Wed and the treatment went very well, to the point he is actually eliminating the third treatment. Apparently the chemo constricts the blood vessels which means it's also stopping the body from feeding the tumor so in theory we should have the tumors confined and dying. Hmmm that doesn't sound medical at all but works for me. Good news. Now we are on the list and will still be looking at a transplant to complete a full cure.
When you get that diagnosis Liver Cancer (picture that in huge bold red letters) you wonder whats coming next. When the Dr told us "if you do nothing you're looking at 9-23 months" that can shake you a bit. But from the start I have had a very real, strong faith that we would get through this. Just this last week another family at our middle school wasn't so lucky. Her husband went in for foot surgery, had a heart attack and died. Wow. Do you think she had any expectation of that. They have a 7th grade son. My heart just goes out to her. I can imagine what she is dealing with, the nightmares have flickered through my head for sure. Each day I remember how blessed we really are despite this little challenge.
We have two wonderful, strong, intelligent and beautiful girls. Wade is handling treatment and responding well. Medical advances have made transplants so successful and offer a long life afterward.
So go out and embrace life. Be thankful for all you are blessed with. Share a kindness with a neighbor. Make a difference in your community. Hug your children and tell them what marvelous people they are. Love your spouse. Get in touch with an old friend.
Friday, June 20, 2008
Friday, June 6, 2008
Back to the transplant review
What a week.
I guess my frustration with the whole interview process was on target. They called yesterday to tell me they went with another person. I can't say I'm totally disappointed. It really didn't seem like they were looking for change even with all their questions asking how I would improve and increase the program. So I guess they went with a more traditional or comfortable applicant. You know me, I never want to be just the comfortable choice....
As for home life, Wade had a tougher reaction to his chemo treatment yesterday than the previous time. I think we just rushed things a little. We thought they would let him go home aroun 5 or 6:00 and they ended up sending us out around 1:30. A little early and he payed for it. This morning looks good so far. Finally keeping some liquid in and just resting. Now they are telling us the latest MRI only shows one lesion not two and if they don't confirm two it will toss him off the transplant list. We have previous readings that show it and it's been confirmaed by more than one Dr so now it will go into the review meeting on Tuesday and try to get the last MRI report ammended. One small tumor does not qualify for the cancer "exception" and bump in MELD score so right now Wade has a score of 8 on a scale up to 30. He would not even be on the list with that score without the cancer. At this point it's no longer the HEP B that's an issue, it's the cancer and making sure it doesn't spread. The bone scan and CT of the abdomen were both negative so we are pretty confident, as much as we can be, that it's confined and hopefully the chemo is working. So we wait to see what the transplant team says next week and if need be go back for a third chemo treatment in another month or so. It's usually after the third treatment that they re-evaluate the cancer but I'm wondering if they saw any change on the MRI this week. I'll have to ask the Dr.
Everything will work out and I think it's for the best that the job thing didn't happen just yet. I would certainly look at other options if you hear of any out there....
I guess my frustration with the whole interview process was on target. They called yesterday to tell me they went with another person. I can't say I'm totally disappointed. It really didn't seem like they were looking for change even with all their questions asking how I would improve and increase the program. So I guess they went with a more traditional or comfortable applicant. You know me, I never want to be just the comfortable choice....
As for home life, Wade had a tougher reaction to his chemo treatment yesterday than the previous time. I think we just rushed things a little. We thought they would let him go home aroun 5 or 6:00 and they ended up sending us out around 1:30. A little early and he payed for it. This morning looks good so far. Finally keeping some liquid in and just resting. Now they are telling us the latest MRI only shows one lesion not two and if they don't confirm two it will toss him off the transplant list. We have previous readings that show it and it's been confirmaed by more than one Dr so now it will go into the review meeting on Tuesday and try to get the last MRI report ammended. One small tumor does not qualify for the cancer "exception" and bump in MELD score so right now Wade has a score of 8 on a scale up to 30. He would not even be on the list with that score without the cancer. At this point it's no longer the HEP B that's an issue, it's the cancer and making sure it doesn't spread. The bone scan and CT of the abdomen were both negative so we are pretty confident, as much as we can be, that it's confined and hopefully the chemo is working. So we wait to see what the transplant team says next week and if need be go back for a third chemo treatment in another month or so. It's usually after the third treatment that they re-evaluate the cancer but I'm wondering if they saw any change on the MRI this week. I'll have to ask the Dr.
Everything will work out and I think it's for the best that the job thing didn't happen just yet. I would certainly look at other options if you hear of any out there....
Thursday, May 29, 2008
We've finally made the list
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.
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.
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.
Saturday, April 19, 2008
Busy Week
Well this was a busy week. After waiting a couple of days I finally called the Dr office to see when we are to be scheduled for the Chemo treatment. Frankly hit a couple of little walls. I understand the folks there are busy but this is my husbands life we are talking about and we aren't into sitting around. It must be tough for them since every patient they have is in some stage of crisis mode.
So, finally Friday afternoon I had a call back to schedule treatment for this coming Wednesday - Friday. We must check in at the hospital at 6:30 am so I'll work out some assistance for getting the girls off to school. The Chemo-Embolization will be done but first they will run some last minute labs to make sure the counts are OK for the procedure. Not sure on the exact time but it could take from 2-3 hours. They will be using a catheter to go up the leg and into the liver to place the Chemo right on top of the tumor. Since there are two tumors and they are pretty much at opposite ends of the liver it is a little touchy. We are hoping there isn't too much schirosis as that will be a problem for the treatment.
They will do the RFA (Radio Frequency Ablation) on Thursday at 1:00. We didn't expect them to be so close together but this is typical. The "oil" stain from the chemo actually makes the tumor more visible for the RFA procedure and the RFA reacts in a way to emphasise the Chemo so they work better together. One more night in the hospital and back home on Friday.
Timing isn't great but I'll make it all work. Our youngest daughter was elected to her class Leadership Team for next year in High School. This is a big deal and she really wanted it. I am so proud of her and so happy that she stepped out there and did it on her own. Now there is a mandatory parent meeting Thursday night and she will go on a retreat with the rest of the team over the weekend. I think I can juggle being at the hospital, making sure the girls get to school and still be home for dinner and the evening with them. Then the 2nd procedure should be done in time for me to make the meeting Thursday night. I want to make sure she is able to come home on Friday afternoon for a visit with dad before she leaves town. I think it's important to reassure her that he's fine and she doesn't need to worry.
Our older daughter seems to be fine. I talked with her a little this morning about the upcoming treatments and she tells me she doesn't need all the details. She knows it's there but it's being taken care of and will go away eventually. Protecting her little bubble. God knows there is enough pressure being in High School, keeping up your grades etc. She's active, involved in clubs and doing great. I have two beautiful strong wonderful daughters.
Once again counting my many blessings and having faith that the rest will pass.
one of my favorite sayings "this too shall pass".
I've also reached out for more help at work and with my community involvement. I actually feel stronger for saying outright that I am stepping back and need this time for my family. We'll get through this together.
So, finally Friday afternoon I had a call back to schedule treatment for this coming Wednesday - Friday. We must check in at the hospital at 6:30 am so I'll work out some assistance for getting the girls off to school. The Chemo-Embolization will be done but first they will run some last minute labs to make sure the counts are OK for the procedure. Not sure on the exact time but it could take from 2-3 hours. They will be using a catheter to go up the leg and into the liver to place the Chemo right on top of the tumor. Since there are two tumors and they are pretty much at opposite ends of the liver it is a little touchy. We are hoping there isn't too much schirosis as that will be a problem for the treatment.
They will do the RFA (Radio Frequency Ablation) on Thursday at 1:00. We didn't expect them to be so close together but this is typical. The "oil" stain from the chemo actually makes the tumor more visible for the RFA procedure and the RFA reacts in a way to emphasise the Chemo so they work better together. One more night in the hospital and back home on Friday.
Timing isn't great but I'll make it all work. Our youngest daughter was elected to her class Leadership Team for next year in High School. This is a big deal and she really wanted it. I am so proud of her and so happy that she stepped out there and did it on her own. Now there is a mandatory parent meeting Thursday night and she will go on a retreat with the rest of the team over the weekend. I think I can juggle being at the hospital, making sure the girls get to school and still be home for dinner and the evening with them. Then the 2nd procedure should be done in time for me to make the meeting Thursday night. I want to make sure she is able to come home on Friday afternoon for a visit with dad before she leaves town. I think it's important to reassure her that he's fine and she doesn't need to worry.
Our older daughter seems to be fine. I talked with her a little this morning about the upcoming treatments and she tells me she doesn't need all the details. She knows it's there but it's being taken care of and will go away eventually. Protecting her little bubble. God knows there is enough pressure being in High School, keeping up your grades etc. She's active, involved in clubs and doing great. I have two beautiful strong wonderful daughters.
Once again counting my many blessings and having faith that the rest will pass.
one of my favorite sayings "this too shall pass".
I've also reached out for more help at work and with my community involvement. I actually feel stronger for saying outright that I am stepping back and need this time for my family. We'll get through this together.
Wednesday, April 16, 2008
Lots of news
I guess it doesn't matter if I miss a few days since I'm only posting for me. Lots of information has been coming at us. Friday we got the call that we made it through the evaluation process for transplant and have been accepted into the program. However there are a few things we need to do before being put on the list.
Yesterday we met with a wonderful Radiologist to discuss treatment on the cancer. We really felt he was the first Dr to sit down and actually talk with us. There are so many things flying at us and for the most part we just get orders of where to go and when to be there. This guy actually answered some questions and talked about the reality of what we are facing. He kept saying he didn't want to scare us and interestingly nothing he had to say scared me. One point that keeps bopping around me head is the notion that with no treatment, if we just let the cancer run its course the life expectancy is 9-22 months. This would be frightening if I didn't know that we are going to do everything we can to fight it, not sit back and let it win. I have a calm faith that everything is going to work out.
From that we discussed the treatment he suggests. They will send a needle, shunt directly into the liver right above the tumor and inject Chemo right onto the spot. This will hopefully shrink the tumor and can be repeated in about a month if need be. This is a much less invasive procedure, no surgery and much less effect from the chemo since it's focused not flooded into your whole body. There shouldn't be a lot of reaction, rarely is there hair loss, some people have a little nausea and tiredness for a few days. This covers our concern of taking away his strength for treatment then having the transplant come up and not be in the best condition to handle it.
The second stage of this treatment is where they go in from the side, kind of like a biopsy into the liver and use radio frequency to kill off the cells in the tumor. Again not too invasive, there is some concern regarding the location of the tumors, one being near the edge of the liver on the lower part, easy to reach but close to the wall of the liver. If it gets much larger that could become an issue. The other is high up just under the diaphragm and a little harder to reach. The concern is going through so much of the good liver to get to it, causing trauma. In dealing with two spots we have to be careful not to damage too much of the good liver or it could end in liver failure. I guess that would put us on the direct path for the transplant.
We feel confident the treatment will be a benefit and are pleased to have some direct activity finally. They should be calling this afternoon to make an appointment for the treatment next week. The check in is 6:30 am and there will be an overnight stay for observation.
Work will be taking a back seat even though I have two listings coming on this next week with brokers tours. I've also go my community service and foundation work but it will wait. There are others that can step up and take care of thing.
The girls have a lot going on with school right now with testing and projects. My youngest is running for High School leadership (class officer) and is really putting her heart into it. I so hope she wins as she could really use a boost of confidence right now. JR High is such an up and down time and she is a soft heart. Also determined and ambitious which are great.
I've got to hit the treadmill. My therapy of sorts.
This weekend is my husbands birthday. I wonder if he questions how many more there will be. I hope not. I don't think so. He's keeping a great attitude and reading everything he can find to be informed. We are trying to be proactive and stay on top of things.
And trying to have a life, love my kids, enjoy the sun, marvel at the flowers and remember our many blessings. This too shall pass and we will make it through together. Next month we celebrate our 21st wedding anniversary. You don't make it that many years without some challenges and this is by far our hardest but I have full faith in our strength. We will be OK. Life will be normal again and it will not include Cancer.
Yesterday we met with a wonderful Radiologist to discuss treatment on the cancer. We really felt he was the first Dr to sit down and actually talk with us. There are so many things flying at us and for the most part we just get orders of where to go and when to be there. This guy actually answered some questions and talked about the reality of what we are facing. He kept saying he didn't want to scare us and interestingly nothing he had to say scared me. One point that keeps bopping around me head is the notion that with no treatment, if we just let the cancer run its course the life expectancy is 9-22 months. This would be frightening if I didn't know that we are going to do everything we can to fight it, not sit back and let it win. I have a calm faith that everything is going to work out.
From that we discussed the treatment he suggests. They will send a needle, shunt directly into the liver right above the tumor and inject Chemo right onto the spot. This will hopefully shrink the tumor and can be repeated in about a month if need be. This is a much less invasive procedure, no surgery and much less effect from the chemo since it's focused not flooded into your whole body. There shouldn't be a lot of reaction, rarely is there hair loss, some people have a little nausea and tiredness for a few days. This covers our concern of taking away his strength for treatment then having the transplant come up and not be in the best condition to handle it.
The second stage of this treatment is where they go in from the side, kind of like a biopsy into the liver and use radio frequency to kill off the cells in the tumor. Again not too invasive, there is some concern regarding the location of the tumors, one being near the edge of the liver on the lower part, easy to reach but close to the wall of the liver. If it gets much larger that could become an issue. The other is high up just under the diaphragm and a little harder to reach. The concern is going through so much of the good liver to get to it, causing trauma. In dealing with two spots we have to be careful not to damage too much of the good liver or it could end in liver failure. I guess that would put us on the direct path for the transplant.
We feel confident the treatment will be a benefit and are pleased to have some direct activity finally. They should be calling this afternoon to make an appointment for the treatment next week. The check in is 6:30 am and there will be an overnight stay for observation.
Work will be taking a back seat even though I have two listings coming on this next week with brokers tours. I've also go my community service and foundation work but it will wait. There are others that can step up and take care of thing.
The girls have a lot going on with school right now with testing and projects. My youngest is running for High School leadership (class officer) and is really putting her heart into it. I so hope she wins as she could really use a boost of confidence right now. JR High is such an up and down time and she is a soft heart. Also determined and ambitious which are great.
I've got to hit the treadmill. My therapy of sorts.
This weekend is my husbands birthday. I wonder if he questions how many more there will be. I hope not. I don't think so. He's keeping a great attitude and reading everything he can find to be informed. We are trying to be proactive and stay on top of things.
And trying to have a life, love my kids, enjoy the sun, marvel at the flowers and remember our many blessings. This too shall pass and we will make it through together. Next month we celebrate our 21st wedding anniversary. You don't make it that many years without some challenges and this is by far our hardest but I have full faith in our strength. We will be OK. Life will be normal again and it will not include Cancer.
Sunday, April 13, 2008
The sun is out
Wow, the days go by so fast. I want to slow them down and enjoy the sun that is finally here.
Friday I called the Drs to see what news there was from all the tests/evaluations. Got the nurse who knows just enough to be scary but not enough to really make sense.
According to her we have been accepted into the program but need to address some issues before they will put us on the transplant list. Zinc is low, I guess this comes from the fact that we have reduced our meat intake to very little and no red meat. Need to rethink that and start on a multiple vitamin. Bone density is low, ? Not sure how or why but increasing milk and cheese products to combat that.
She also talks about treating the cancer while waiting to get on the list. We had thought to retain all his strength to face that battle and not focus on the cancer having understood it to be slow growing and that the wait wouldn't be too long. Now listening to her she is scary.
Gotta run, more later.
The sun is out, time for a walk.
Friday I called the Drs to see what news there was from all the tests/evaluations. Got the nurse who knows just enough to be scary but not enough to really make sense.
According to her we have been accepted into the program but need to address some issues before they will put us on the transplant list. Zinc is low, I guess this comes from the fact that we have reduced our meat intake to very little and no red meat. Need to rethink that and start on a multiple vitamin. Bone density is low, ? Not sure how or why but increasing milk and cheese products to combat that.
She also talks about treating the cancer while waiting to get on the list. We had thought to retain all his strength to face that battle and not focus on the cancer having understood it to be slow growing and that the wait wouldn't be too long. Now listening to her she is scary.
Gotta run, more later.
The sun is out, time for a walk.
Thursday, April 10, 2008
The last lecture
Today I am reading The Last Lecture by Randy Pausch. What a moving story and such a courageous family. If you haven't heard of it check it out.
After yesterdays trials today is much calmer. We are waiting for news to see if we are going to be placed on the transplant list or if they will wait till he's sicker. Your cancer has to be at least 2 centimeters to qualify for an exception to get you added for that reason. Just having Hep B alone doesen't get him very far unless he was super sick. The medication is controlling that so the biggest concern now is the Cancer.
I'm trying to think of something creative for dinner as vegies and fruit are getting old.
This morning my girlfriend and I went over to the Northwest Children's Outreach to volunteer as we do every Thursday. It feels good to help others and get away from our worries for a while. They are another fabulous organization you can find them on the web.
After yesterdays trials today is much calmer. We are waiting for news to see if we are going to be placed on the transplant list or if they will wait till he's sicker. Your cancer has to be at least 2 centimeters to qualify for an exception to get you added for that reason. Just having Hep B alone doesen't get him very far unless he was super sick. The medication is controlling that so the biggest concern now is the Cancer.
I'm trying to think of something creative for dinner as vegies and fruit are getting old.
This morning my girlfriend and I went over to the Northwest Children's Outreach to volunteer as we do every Thursday. It feels good to help others and get away from our worries for a while. They are another fabulous organization you can find them on the web.
Wednesday, April 9, 2008
Hepatitis B
Where did the cancer come from?
Where to start. My husband was sick last year and went through a bunch of testing before they finally determined he apparently got Hepatitis B from his mother at birth. (She died of liver cancer caused by Hep B 7 years ago) He had an “episode” as they call it and was pretty sick. Once we figured it out we started paying greater attention to his diet and exercise to keep him healthy. I was also tested and negative so it seems he isn’t able to pass it just a dormant carrier till it flared up. I’ve since been immunized and continue to be quite healthy.
We continued to monitor Him thinking all was fine till he got sick again this winter, his worst episode yet. At that point we decided to try getting him into a trial program for a new Hep B medication that would hopefully not be a life long drug. However while we were trying to get his levels back in line for that they went ahead a did a routine biopsy of the liver to make sure everything was fine and found two spots of Cancer. They talked of removing the spots and putting him on meds for the Hep B but that would still leave a compromised liver that would be very susceptible to cancer and likely have a reoccurrence in the future. Then they determined that the spots were too close to the bile duct and vein/artery coming into the liver and could potentially harm the liver more than it would help and we might still be looking at a transplant but would be in critical shape. So, we spent a few days this week up at OHSU going through transplant evaluation and it looks like that will be the path. The statistics are good and we anticipate a great long life to come. Getting through the procedure and recovery will be challenging but he's is in good health otherwise and will be in much better shape to bounce back.
From what we have heard once he is actually placed on the list things could move very quickly. By having cancer he is automatically moved up the list and according to their current list he would be in the first position if a blood match donor came available. The average wait is just over 3 months but would likely be shortened by his being at the top of the list. I keep telling him recovery will be much nicer during the warm summer months.
We are keeping a positive thought and thankful for the medical advances that make this possible. We are also sending out prayers to those that give beyond themselves and make the option of a transplant a possibility. Such a serious gift comes with a responsibility to treasure it and make the most of your life.
Where to start. My husband was sick last year and went through a bunch of testing before they finally determined he apparently got Hepatitis B from his mother at birth. (She died of liver cancer caused by Hep B 7 years ago) He had an “episode” as they call it and was pretty sick. Once we figured it out we started paying greater attention to his diet and exercise to keep him healthy. I was also tested and negative so it seems he isn’t able to pass it just a dormant carrier till it flared up. I’ve since been immunized and continue to be quite healthy.
We continued to monitor Him thinking all was fine till he got sick again this winter, his worst episode yet. At that point we decided to try getting him into a trial program for a new Hep B medication that would hopefully not be a life long drug. However while we were trying to get his levels back in line for that they went ahead a did a routine biopsy of the liver to make sure everything was fine and found two spots of Cancer. They talked of removing the spots and putting him on meds for the Hep B but that would still leave a compromised liver that would be very susceptible to cancer and likely have a reoccurrence in the future. Then they determined that the spots were too close to the bile duct and vein/artery coming into the liver and could potentially harm the liver more than it would help and we might still be looking at a transplant but would be in critical shape. So, we spent a few days this week up at OHSU going through transplant evaluation and it looks like that will be the path. The statistics are good and we anticipate a great long life to come. Getting through the procedure and recovery will be challenging but he's is in good health otherwise and will be in much better shape to bounce back.
From what we have heard once he is actually placed on the list things could move very quickly. By having cancer he is automatically moved up the list and according to their current list he would be in the first position if a blood match donor came available. The average wait is just over 3 months but would likely be shortened by his being at the top of the list. I keep telling him recovery will be much nicer during the warm summer months.
We are keeping a positive thought and thankful for the medical advances that make this possible. We are also sending out prayers to those that give beyond themselves and make the option of a transplant a possibility. Such a serious gift comes with a responsibility to treasure it and make the most of your life.
Being proactive
After falling into a bit of a funk this morning I am picking up the pieces. I've aranged for an associate from my office to help with some work and I'm going to run pick up something to surprise my daughter at school for lunch. We haven't had french fries in forever. All the being healthy, good diet etc. Still not sure if I should make an appt with her teachers or councelor. I'd hope the councelor mentions it to the teachers but should I do that or continue to hold back and see how she wants to handle it. Sometimes it's harder when people know. They treat you different. In other ways I think it kind of shields you because maybe then they wont lay all their garbage on you too.
How to handle it in my business is another thing. A couple of really close people have offered their support without strings wich is exceptional in my business. A couple others have vaguely offered but you know there are limitations in there.
Do you tell your clients? A couple know but they are people I've worked with before and also consider friends. I have some concern that these other clients that don't know me that well will be concerned that I'm not up to the task. It's really tiring to juggle all the thoughts. Unfortunately we can't just pull the blanket over our heads and wait for it all to pass.
How to handle it in my business is another thing. A couple of really close people have offered their support without strings wich is exceptional in my business. A couple others have vaguely offered but you know there are limitations in there.
Do you tell your clients? A couple know but they are people I've worked with before and also consider friends. I have some concern that these other clients that don't know me that well will be concerned that I'm not up to the task. It's really tiring to juggle all the thoughts. Unfortunately we can't just pull the blanket over our heads and wait for it all to pass.
Daughter is finally talking
This is a tough morning. I just had a call from a good friend whos daughter is in school with mine. 8th grade. After keeping it in for weeks my daughter has finally come out and told her friend that dad has cancer. I wish I could take away the pain she must be going through and make it all better but that's not how life works. I've worried that I'm not talking with them enough about what's going on but where do you draw the line. I thought about meeting with her teachers or talking with her closest friends but I think you need to respect their privacy and let them decide when it's time for that conversation. Right now when we have so little control it's important that they feel in charge of some parts of it.
It shows her strength that she knows when to reach out and who to reach towards. I couldn't be more proud of her in how she's handling things. Then I want to gather her in my arms and have a good cry.
It's hard to know how your friends are going to react to the news. It's very difficult to keep hearing how sorry everyone is. I appreciate that but really would like to hear more positive thoughts right now. So I can fully understand why she is hesitant to talk. What a tough spot. I'm glad she is starting to let a little of the preassure out and has people to talk with.
What amazing and stong young women my daughters are becoming.
It shows her strength that she knows when to reach out and who to reach towards. I couldn't be more proud of her in how she's handling things. Then I want to gather her in my arms and have a good cry.
It's hard to know how your friends are going to react to the news. It's very difficult to keep hearing how sorry everyone is. I appreciate that but really would like to hear more positive thoughts right now. So I can fully understand why she is hesitant to talk. What a tough spot. I'm glad she is starting to let a little of the preassure out and has people to talk with.
What amazing and stong young women my daughters are becoming.
Tuesday, April 8, 2008
Where to start
Hello out there. For a long time I have thought of starting a blog. Recent events have given me a push to try something new. As I sit here looking out the window at dogs playing and listen to my kids laughing down stairs I still can't escape the frightening reality that Cancer has invaded my home. My husband of almost 21 years was recently diagnosed with Liver Cancer and we are in the process of determining the best course of treatment.
I am hoping this blog will allow me to communicate with friends and family but more than that perhaps make contact with others who have gone through similar situations.
I'm sorry to make this first posting so sort and will attempt to get back often. I look forward to hearing from and talking with positive minded people who believe good people deserve a good outcome even when heavy challenges are thrown at them.
I am hoping this blog will allow me to communicate with friends and family but more than that perhaps make contact with others who have gone through similar situations.
I'm sorry to make this first posting so sort and will attempt to get back often. I look forward to hearing from and talking with positive minded people who believe good people deserve a good outcome even when heavy challenges are thrown at them.
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