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.
Saturday, April 19, 2008
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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