Posts
Tuesday, August 12, 2008
Monday, August 11, 2008
S#it Happens
So, Jake wanted to watch this rated R movie while Steve and Steph were out of town. I could not ok that so I told him to call his parents (he was going to do that anyway). So, we are sitting in the kitchen talking about it and he is trying to figure out what time would be the best time to call them. Then, my kid pipes in. Zach tells Jake the following.....
Zach - age 9 and Jake - age 14
Zach: Jake, you should call them now.
Jake: Why now?
Zach: Because by now (it was around 8 PM I think) they have had a few drinks and they will be more likely to say yes.
WHAT THE HECK????? Zach is talking like I am a boozer and he has the 411 on the amount of time it takes to become agreeable after drinking.
After the boys high fived one another I chastized my kid and went forward with our conversation.
That is as funny as I get right now. Let's discuss some serious information.
I asked Gar what he wanted the title of the blog to be and there you have it. I would have chosed something more melancholy.
I am at a loss for words right now. It is the morning after and I am still struggling with what to tell you. I am numb and in shock on top of being emotionally exhausted and I feel out of sorts.
I do not have the energy to give you a blow by blow of our day yesterday but I will try to convey to you what has been conveyed to us.
We went in for a routine test yesterday (colangiogram). Because Gary had indicated that he was in increasing pain they decided to do a CT scan to check things out.
It just gets more and more complicated and as you all know cancer can take many paths depending on the day.
Gary has several obstacles right now. Over the weekend he developed this new pain in his abdomen. He has been in unbearable pain throughout the weekend and remains that way this morning.
Gary has four HUGE problems right now.
1. Gary has a hole in his bladder and the urine is filling his abdominal cavity. This is probably due to radiation damage. The bladder wall weakened and this hole has opened up.
2. Gary has a major bowel obstruction again. His CT shows HUGE loops of bowel (so bad). He is not throwing up yet and we are trying to avoid an NG tube by giving him limited clear liquid. This is not good because he will lose even more weight. This is also something that has been caused by radiation damage.
3. Gary's left bile ducts are clogged in his liver. Really blocked. They can put a stint in to open them up but this will not affect the cancer in any positive/negative way. The lesion is growing and blocking the ducts.
4. He has uncontrollable pain.
5. We can't treat the cancer and it is growing. He has not had chemo since 6/25 which puts us 6 weeks out of treatment.
If you add all of these things up and understodd exactly what all of this means you will know that we are facing the unimaginable. Radiation has caused so much damage that we are unsure if they can even fix #1 and #2. Once the damage is done by radiation the tissue becomes like wet toilet paper it can be nearly impossible to repair.
Dr. Barth offered 2 things to us. Either Gary can go on hospice and die at home or he can try to fight and possibly never even make it home from the hospital and still die. I want Gary to fight, beat the odds and fully recover from the surgeries and fight the cancer and ultimately WIN!! Is that going to happen? Odds are severly against us but God has come in during the 11th hour many times before and provided healing. This is my desire and I know it is Gary's as well.
Since the cancer can not be treated right now while we are fighting and trying to get over so many other obstacles it will put us back at least another 5 weeks and that equals 3 months. If we fight #1-4 and get through that we will still be faced with 3 months of time that has elapsed where the cancer has grown. It is already growing and we are losing ground as we speak.
When I tell you cancer changes things daily I meant it. Never in a million years did I think that we would be faced with that news yesterday.
We are both numb and beyond sad. I can't even imagine being Gary right now. What is he thinking? How does one come to terms with what he is facing? I know what I am facing and I am totally devastated just thinking about things.
Here is what we are going to do.
We are not going to focus on Gary dying. Trust me, I am not in denial so please spare the comments about how I need to prepare and how I need to get real. 99.9% of you have never left comments to me to that affect but a few people have and trust me when I tell you that they are NOT helpful at all. I get it loud and clear.
We will chose to focus on living and getting through each day as it comes. God tells us not to worry about tomorrow when today brings enough problems of its own. I agree. One day at a time.
Gary and I are focusing on the boys making sure things stay as normal as possible during this time. We have not told them what is going on right now. They know Gary is going in the hospital for a minimum of a month but that is all they know.
Remember, I could get a phone call this morning and everything could change from what I have told you. All of the surgeons are presently talking with Barth and they are looking at scans and figuring things out. So far, we think we will be at Hoag for all of the surgeries.
There is nothing any of you can do besides pray. Pray until you can't pray anymore. I am not going to give you anything specific to pray for because we need so much pray for so many different things. Pick something from above and pray for it. I am still praying for the 11th hour divine intervention.
After much deliberation, Gary is chosing to fight this cancer. He told me that he is not going to lay down and die. If he is going to die then he is going to die fighting and he wants his boys to know that he is not a quitter!
We love you and we know your thoughts and prayers are with us always. Stay tuned and I will keep you updated. I might have some guests updating you if I am overwhelmed but I promise you that they will have to include at least 1 joke within the text!
Love,
L
Zach - age 9 and Jake - age 14
Zach: Jake, you should call them now.
Jake: Why now?
Zach: Because by now (it was around 8 PM I think) they have had a few drinks and they will be more likely to say yes.
WHAT THE HECK????? Zach is talking like I am a boozer and he has the 411 on the amount of time it takes to become agreeable after drinking.
After the boys high fived one another I chastized my kid and went forward with our conversation.
That is as funny as I get right now. Let's discuss some serious information.
I asked Gar what he wanted the title of the blog to be and there you have it. I would have chosed something more melancholy.
I am at a loss for words right now. It is the morning after and I am still struggling with what to tell you. I am numb and in shock on top of being emotionally exhausted and I feel out of sorts.
I do not have the energy to give you a blow by blow of our day yesterday but I will try to convey to you what has been conveyed to us.
We went in for a routine test yesterday (colangiogram). Because Gary had indicated that he was in increasing pain they decided to do a CT scan to check things out.
It just gets more and more complicated and as you all know cancer can take many paths depending on the day.
Gary has several obstacles right now. Over the weekend he developed this new pain in his abdomen. He has been in unbearable pain throughout the weekend and remains that way this morning.
Gary has four HUGE problems right now.
1. Gary has a hole in his bladder and the urine is filling his abdominal cavity. This is probably due to radiation damage. The bladder wall weakened and this hole has opened up.
2. Gary has a major bowel obstruction again. His CT shows HUGE loops of bowel (so bad). He is not throwing up yet and we are trying to avoid an NG tube by giving him limited clear liquid. This is not good because he will lose even more weight. This is also something that has been caused by radiation damage.
3. Gary's left bile ducts are clogged in his liver. Really blocked. They can put a stint in to open them up but this will not affect the cancer in any positive/negative way. The lesion is growing and blocking the ducts.
4. He has uncontrollable pain.
5. We can't treat the cancer and it is growing. He has not had chemo since 6/25 which puts us 6 weeks out of treatment.
If you add all of these things up and understodd exactly what all of this means you will know that we are facing the unimaginable. Radiation has caused so much damage that we are unsure if they can even fix #1 and #2. Once the damage is done by radiation the tissue becomes like wet toilet paper it can be nearly impossible to repair.
Dr. Barth offered 2 things to us. Either Gary can go on hospice and die at home or he can try to fight and possibly never even make it home from the hospital and still die. I want Gary to fight, beat the odds and fully recover from the surgeries and fight the cancer and ultimately WIN!! Is that going to happen? Odds are severly against us but God has come in during the 11th hour many times before and provided healing. This is my desire and I know it is Gary's as well.
Since the cancer can not be treated right now while we are fighting and trying to get over so many other obstacles it will put us back at least another 5 weeks and that equals 3 months. If we fight #1-4 and get through that we will still be faced with 3 months of time that has elapsed where the cancer has grown. It is already growing and we are losing ground as we speak.
When I tell you cancer changes things daily I meant it. Never in a million years did I think that we would be faced with that news yesterday.
We are both numb and beyond sad. I can't even imagine being Gary right now. What is he thinking? How does one come to terms with what he is facing? I know what I am facing and I am totally devastated just thinking about things.
Here is what we are going to do.
We are not going to focus on Gary dying. Trust me, I am not in denial so please spare the comments about how I need to prepare and how I need to get real. 99.9% of you have never left comments to me to that affect but a few people have and trust me when I tell you that they are NOT helpful at all. I get it loud and clear.
We will chose to focus on living and getting through each day as it comes. God tells us not to worry about tomorrow when today brings enough problems of its own. I agree. One day at a time.
Gary and I are focusing on the boys making sure things stay as normal as possible during this time. We have not told them what is going on right now. They know Gary is going in the hospital for a minimum of a month but that is all they know.
Remember, I could get a phone call this morning and everything could change from what I have told you. All of the surgeons are presently talking with Barth and they are looking at scans and figuring things out. So far, we think we will be at Hoag for all of the surgeries.
There is nothing any of you can do besides pray. Pray until you can't pray anymore. I am not going to give you anything specific to pray for because we need so much pray for so many different things. Pick something from above and pray for it. I am still praying for the 11th hour divine intervention.
After much deliberation, Gary is chosing to fight this cancer. He told me that he is not going to lay down and die. If he is going to die then he is going to die fighting and he wants his boys to know that he is not a quitter!
We love you and we know your thoughts and prayers are with us always. Stay tuned and I will keep you updated. I might have some guests updating you if I am overwhelmed but I promise you that they will have to include at least 1 joke within the text!
Love,
L
Friday, August 8, 2008
NO PAIN MANAGEMENT FOR GARY
Wow.
Like I said before every single day changes with cancer.
We went to the doc today for our pain management appointment at 2:45.
Gary has not been feeling up to par and he has been sweating and has had some random fevers. So, I forced him to go into the office before his appointment today to get his counts checked. I was mainly wanting to check his white cell counts.
Sure enough, his white cells are elevated which more than likely indicates an infection.
I went back to the pharmacy again tonight and picked up his 2 antibiotics. The doctors will meet again on Monday to discuss Gary's case. He will have a cholangiogram on Monday. This is a procedure where they can take a closer look at the liver and the bile ducts via dye and a CT Scan.
Then, Gary will have the pain management on Tuesday and then the chemoembolism to the liver on Wednesday. Remember, with cancer everything is subject to change each day!
I am on my way to get my Dad from the airport. I will be in and out all weekend!
Love, L
Like I said before every single day changes with cancer.
We went to the doc today for our pain management appointment at 2:45.
Gary has not been feeling up to par and he has been sweating and has had some random fevers. So, I forced him to go into the office before his appointment today to get his counts checked. I was mainly wanting to check his white cell counts.
Sure enough, his white cells are elevated which more than likely indicates an infection.
I went back to the pharmacy again tonight and picked up his 2 antibiotics. The doctors will meet again on Monday to discuss Gary's case. He will have a cholangiogram on Monday. This is a procedure where they can take a closer look at the liver and the bile ducts via dye and a CT Scan.
Then, Gary will have the pain management on Tuesday and then the chemoembolism to the liver on Wednesday. Remember, with cancer everything is subject to change each day!
I am on my way to get my Dad from the airport. I will be in and out all weekend!
Love, L
Thursday, August 7, 2008
BIG SPEEDBUMPS
Good Evening. I have a treatment update.
We saw Dr. Kim at Hoag today to discuss the plan for the radiation of Gary's liver. We need to have a radiation treatment called SBRT.
What is Stereotactic Body Radiotherapy (SBRT)?
Stereotactic radiotherapy is a high precision radiotherapy method in which a very high radiation dose is given to tumors.
The meaning of the word stereotactic is that a specially designed coordinate-system is used for exact localization of the tumor in the body, and also to accurately pinpoint the X-ray beams to the tumor. By giving a very high radiation dose the chance to kill all cells in the tumor is high.
So, we found out that Aetna does not want to give Gary the go ahead to have this treatment that he needs. The treatment consists of 5 - 30 minute sessions. The cost runs about $30,000.00 if we were to pay out of pocket.
The insurance company argues that the traditional radiation will suffice. The traditional route poses precision issues (it can't pinpoint the tumor like SBRT) so the surrounding tissue and organs run a higher risk of being damaged by the radiation. The kidney, small bowel and of course the liver will all be at risk. Gary would also suffer many other side effects due to the larger field/dose of radiation.
It makes no sense to me that the insurance company is not willing to okay the SBRT but they will okay the traditional route and then when Gary's organs and tissue become damaged and he has to be hospitalized and have additional care they are going to be okay with paying for all of that? It is absolutely infuriating!
So, we have 2 weeks to battle the insurance company. We can't wait any longer than that. If we lose at the end of the 2 weeks then we must go with the traditional course of radiation. I am hoping we win and the ruling is overturned and we can move forward with the SBRT.
Tomorrow we have an appointment with Dr. Arata (pain management doc) and will begin experimenting with the epidurals to see if we can locate the nerves and block Gary's pain temporarily. We have to be there at 2:45 PM.
We will move forward (as of now) with the chemoembolization of the liver next Wednesday.
I am so sick of cancer being at the center of Gary's life. Everyday things change and cancer is always the culprit.
Cancer sucks. Plain and simple.
Pray the the insurance company will see that Gary needs this treatment and that they will approve it.
Pray that we can isolate the nerves and lessen Gary's pain.
Pray that Gary can stay positive and does not become nervous while we are waiting to move forward. He needs more CALM right now.
Thanks for keeping up with us. Thanks for your love and prayers!
I am off and running!
Love,
L
We saw Dr. Kim at Hoag today to discuss the plan for the radiation of Gary's liver. We need to have a radiation treatment called SBRT.
What is Stereotactic Body Radiotherapy (SBRT)?
Stereotactic radiotherapy is a high precision radiotherapy method in which a very high radiation dose is given to tumors.
The meaning of the word stereotactic is that a specially designed coordinate-system is used for exact localization of the tumor in the body, and also to accurately pinpoint the X-ray beams to the tumor. By giving a very high radiation dose the chance to kill all cells in the tumor is high.
So, we found out that Aetna does not want to give Gary the go ahead to have this treatment that he needs. The treatment consists of 5 - 30 minute sessions. The cost runs about $30,000.00 if we were to pay out of pocket.
The insurance company argues that the traditional radiation will suffice. The traditional route poses precision issues (it can't pinpoint the tumor like SBRT) so the surrounding tissue and organs run a higher risk of being damaged by the radiation. The kidney, small bowel and of course the liver will all be at risk. Gary would also suffer many other side effects due to the larger field/dose of radiation.
It makes no sense to me that the insurance company is not willing to okay the SBRT but they will okay the traditional route and then when Gary's organs and tissue become damaged and he has to be hospitalized and have additional care they are going to be okay with paying for all of that? It is absolutely infuriating!
So, we have 2 weeks to battle the insurance company. We can't wait any longer than that. If we lose at the end of the 2 weeks then we must go with the traditional course of radiation. I am hoping we win and the ruling is overturned and we can move forward with the SBRT.
Tomorrow we have an appointment with Dr. Arata (pain management doc) and will begin experimenting with the epidurals to see if we can locate the nerves and block Gary's pain temporarily. We have to be there at 2:45 PM.
We will move forward (as of now) with the chemoembolization of the liver next Wednesday.
I am so sick of cancer being at the center of Gary's life. Everyday things change and cancer is always the culprit.
Cancer sucks. Plain and simple.
Pray the the insurance company will see that Gary needs this treatment and that they will approve it.
Pray that we can isolate the nerves and lessen Gary's pain.
Pray that Gary can stay positive and does not become nervous while we are waiting to move forward. He needs more CALM right now.
Thanks for keeping up with us. Thanks for your love and prayers!
I am off and running!
Love,
L
Wednesday, August 6, 2008
PAIN MANAGEMENT
Hi there.
We met with Dr. Arata yesterday and we are moving forward with the management of Gary's nerve pain. Friday Gary will get several shots in his spine so that Dr. Arata can begin to locate which nerves are causing Gary so much pain. Once we figure this out we can manage his pain more permanently. I hope and pray that this will radically change Gary's life!
Yesterday Steph and I took the kids to the beach and we all went body boarding together. We had so much fun! Zach has stepped on 2 sting rays over the past few weeks so yesterday I really messed with him. We were in the water standing up with our boards and I jumped and freaked out and screamed. You should have seen the look on poor Zach's face. I have never seen someone jump on their board so fast! Like a rocket! His face had a look of horror on it! It was awesome! Contrary to what some of you might say I am not a mean Mom! I am simply a fun Mom who likes to get a rise out of my kids! That is what memories are made of people!
I went to the Pageant of The Masters last night with friends. I LOVE going each year and Kathy and Kris treated us to an amazing dinner at Sorrentos. YUM YUM!!!! It was a perfect evening and it has refreshed me!
I am at work right now finishing up some stuff for the weekend and I just finished writing a segment that our church calls "On My Mind". Pastor Todd usually writes it every week and the staff is taking turns writing in his absence. It is obviously my turn this week and I was trying to think of what I wanted to share because there are so many things. I landed on the one thing that has made such an enormous difference in my life - PEACE.
If you wish to read it you may.
I will update again after our appointment with Dr. Kim tomorrow.
Love,
L
ON MY MIND - August 6th
Philippians 4:6-8
Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.
I began immersing myself in Bible studies when Gary and I were going to Coast Hills. I was part of an Essentials group that met every week. Part of my commitment to the group was not only to complete my study each week but I also needed to memorize scripture. Sometimes I felt like I was back in high school cramming for a test. I know you all remember memorizing things at the last second only to forget them the moment you pulled it out of your brain file and used it.
Well, this was no different for me during several of the weeks throughout the year when I memorized scripture to get my little sticker. It was all about the sticker for me.
During one of the weeks everything changed for me. I was given the scripture above and I did my usual MO - memorized it at the last minute, got my sticker and patted myself on the back. I fully expected to forget it like all the others. While I was busy cramming it into my brain with thoughts of reciting it then forgetting it and moving on to next weeks memorization God took this scripture and engrained it into my heart and it has stuck with me ever since. I never knew why. I always wondered. Why this scripture? Maybe it was because I was not a peaceful person – trust me I was not - just ask Gary. Maybe I didn’t understand that God could do things for me that I could not do for myself. I could handle anything on my own without God in the drivers seat. I knew God was always there but I rarely moved over and got out of his way to let Him do what he needed to do.
So, here we are years later in the middle of battling Gary’s cancer and I finally get it. God was giving me a gift that I was not ready to open and understand at the time. I didn’t want to. All those years ago when He opened my eyes to this scripture He knew I was going to NEED it and LIVE by it and He has been waiting for me to do just that.
I wasted so much time worrying and fretting. When I had a miscarriage I was overcome with fear and worry the entire time I was pregnant with Zach. Did that help me? No. When we have faced dire financial problems and I sat up at night wanting to throw up do you think that helped me? No. All that time God was patiently waiting for me for cast all of my burdens on Him so that He could bare my load and I could receive this peace. God gave us His Word and made it so easy and I spent so much time making it complicated.
People, religious or not, look at our struggle and our life and they tell me that they don’t know how we do it. How? They don’t understand. They would surely crumble facing what we face.
I want to tell you how we do it. We are able to bare these struggles because we finally gave up and gave our lives to Him and He in turn gave us the peace He promised to give us through Christ Jesus.
Your kindness, support, love and prayers have all been part of this peace that God gives us. We love all of you and could never thank you enough. You have given us so much and we want to give something back to you.
We want you to have the peace God has given us. If you already have obtained this peace then we ask you to share your story and help others to experience what God has given you. If you do not have peace we ask you to seek it out. Let go of whatever you are struggling with and give it to God. The kicker is that you really have to want to let it go and let Him do His thing. He is waiting for you to do just that. We deeply desire you to have peace in your life like nothing you have ever experienced. When you have this peace you can endure anything!
Peace and Love,
Lisa
We met with Dr. Arata yesterday and we are moving forward with the management of Gary's nerve pain. Friday Gary will get several shots in his spine so that Dr. Arata can begin to locate which nerves are causing Gary so much pain. Once we figure this out we can manage his pain more permanently. I hope and pray that this will radically change Gary's life!
Yesterday Steph and I took the kids to the beach and we all went body boarding together. We had so much fun! Zach has stepped on 2 sting rays over the past few weeks so yesterday I really messed with him. We were in the water standing up with our boards and I jumped and freaked out and screamed. You should have seen the look on poor Zach's face. I have never seen someone jump on their board so fast! Like a rocket! His face had a look of horror on it! It was awesome! Contrary to what some of you might say I am not a mean Mom! I am simply a fun Mom who likes to get a rise out of my kids! That is what memories are made of people!
I went to the Pageant of The Masters last night with friends. I LOVE going each year and Kathy and Kris treated us to an amazing dinner at Sorrentos. YUM YUM!!!! It was a perfect evening and it has refreshed me!
I am at work right now finishing up some stuff for the weekend and I just finished writing a segment that our church calls "On My Mind". Pastor Todd usually writes it every week and the staff is taking turns writing in his absence. It is obviously my turn this week and I was trying to think of what I wanted to share because there are so many things. I landed on the one thing that has made such an enormous difference in my life - PEACE.
If you wish to read it you may.
I will update again after our appointment with Dr. Kim tomorrow.
Love,
L
ON MY MIND - August 6th
Philippians 4:6-8
Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.
I began immersing myself in Bible studies when Gary and I were going to Coast Hills. I was part of an Essentials group that met every week. Part of my commitment to the group was not only to complete my study each week but I also needed to memorize scripture. Sometimes I felt like I was back in high school cramming for a test. I know you all remember memorizing things at the last second only to forget them the moment you pulled it out of your brain file and used it.
Well, this was no different for me during several of the weeks throughout the year when I memorized scripture to get my little sticker. It was all about the sticker for me.
During one of the weeks everything changed for me. I was given the scripture above and I did my usual MO - memorized it at the last minute, got my sticker and patted myself on the back. I fully expected to forget it like all the others. While I was busy cramming it into my brain with thoughts of reciting it then forgetting it and moving on to next weeks memorization God took this scripture and engrained it into my heart and it has stuck with me ever since. I never knew why. I always wondered. Why this scripture? Maybe it was because I was not a peaceful person – trust me I was not - just ask Gary. Maybe I didn’t understand that God could do things for me that I could not do for myself. I could handle anything on my own without God in the drivers seat. I knew God was always there but I rarely moved over and got out of his way to let Him do what he needed to do.
So, here we are years later in the middle of battling Gary’s cancer and I finally get it. God was giving me a gift that I was not ready to open and understand at the time. I didn’t want to. All those years ago when He opened my eyes to this scripture He knew I was going to NEED it and LIVE by it and He has been waiting for me to do just that.
I wasted so much time worrying and fretting. When I had a miscarriage I was overcome with fear and worry the entire time I was pregnant with Zach. Did that help me? No. When we have faced dire financial problems and I sat up at night wanting to throw up do you think that helped me? No. All that time God was patiently waiting for me for cast all of my burdens on Him so that He could bare my load and I could receive this peace. God gave us His Word and made it so easy and I spent so much time making it complicated.
People, religious or not, look at our struggle and our life and they tell me that they don’t know how we do it. How? They don’t understand. They would surely crumble facing what we face.
I want to tell you how we do it. We are able to bare these struggles because we finally gave up and gave our lives to Him and He in turn gave us the peace He promised to give us through Christ Jesus.
Your kindness, support, love and prayers have all been part of this peace that God gives us. We love all of you and could never thank you enough. You have given us so much and we want to give something back to you.
We want you to have the peace God has given us. If you already have obtained this peace then we ask you to share your story and help others to experience what God has given you. If you do not have peace we ask you to seek it out. Let go of whatever you are struggling with and give it to God. The kicker is that you really have to want to let it go and let Him do His thing. He is waiting for you to do just that. We deeply desire you to have peace in your life like nothing you have ever experienced. When you have this peace you can endure anything!
Peace and Love,
Lisa
Monday, August 4, 2008
Recent Developments
Good Evening.
We have had some recent changes to Gary's care and I wanted to give you a brief overview.
After spending 2 hours at Barth's office today we went home with no real resolve. We did however make an appointment to see Dr. Arata tomorrow at 11 AM to discuss a pain pump for Gary. Gary has a new pain that is a nerve pain. It starts in his pelvis and shoots down the back of his leg to the back of his knee. It makes him jittery and very uncomfortable.
We got home and got situated and I got ready to take the kids to the Lake when the phone rang and Rick from Dr. Barth's office informed us that Dr. Barth was in the office and wanted to see us right away.
So, I dropped the kids off and back we went and this time we knew we were going to get some answers.
In a nutshell:
1. Gary needs to gain a substancial amount of weight - 20 LBS! He will need to force himself to eat 3-5 times a day with a caloric intake of at least 2500 cals. to start gaining back his weight. I think he can do this without much problem.
2. Gary's pain is out of control. Dr. Barth wants Gary to do a trial run of an epidural pain management plan. They will insert the catheter into Gary's spine and deliver electrical impulses (?) instead of narcotics. I do not know quite how to explain it and will have more info for you after our 11 AM appointment with Dr. Arata.
3. We will also discuss the chemoembolization process with Dr. Arata and move forward with that. They will fish a line to Gary's liver lesion and it will administer chemo directly to the lesion. THe chemo can stay in his liver for up to 30 days at a time!
4. We have a meeting with Dr. Kim on Thursday at 12:45 PM. He is our Radiation Oncologist at Hoag. Gary will receive radiation to his liver for 5 days straight. This radiation will target the lesion specifically unlike his last experience with radiation. (He had so many tumors in his pelvis that they were unable to target tumors specifically so they had to radiate the entire pelvic region). He will not start this round of radiation until next week.
Here is the deal. Gary's cancer is getting better and we have made significant progress in the regression of the tumors. If we can get his pain managed then I think it will make a HUGE difference for him.
Gary will not be receiving systemic chemo/Avastin as of right now. Until we win some of these other battles (weight gain, pain control, radiation) his body will need more of a break. The genetic marker that kind of identifies the cancer is showing very slow growth at this time. Therefore I think we are safe holding off a few more weeks to do the systemic stuff.
There you go! Sounds fun, huh????
BTW - Chicks is holding their tent sale starting Friday. If you go into the store right now everything that is going into the tent is in the store and priced for the tent sale! No waiting in the long lines on Friday if you go this week!
The kids went to the lake today to kayak and ride on the party boat!
Tomorrow they are off to surf anf body board at Riviera!
I am going to finish cleaning and watch a good movie!
God is my strength and my refuge. I am peaceful but Gary is not yet! Can you please pray for peace for Gary? Come on Laurie! You did it for me now make it happen for Gary!
Love and Hugs,
Lisa
We have had some recent changes to Gary's care and I wanted to give you a brief overview.
After spending 2 hours at Barth's office today we went home with no real resolve. We did however make an appointment to see Dr. Arata tomorrow at 11 AM to discuss a pain pump for Gary. Gary has a new pain that is a nerve pain. It starts in his pelvis and shoots down the back of his leg to the back of his knee. It makes him jittery and very uncomfortable.
We got home and got situated and I got ready to take the kids to the Lake when the phone rang and Rick from Dr. Barth's office informed us that Dr. Barth was in the office and wanted to see us right away.
So, I dropped the kids off and back we went and this time we knew we were going to get some answers.
In a nutshell:
1. Gary needs to gain a substancial amount of weight - 20 LBS! He will need to force himself to eat 3-5 times a day with a caloric intake of at least 2500 cals. to start gaining back his weight. I think he can do this without much problem.
2. Gary's pain is out of control. Dr. Barth wants Gary to do a trial run of an epidural pain management plan. They will insert the catheter into Gary's spine and deliver electrical impulses (?) instead of narcotics. I do not know quite how to explain it and will have more info for you after our 11 AM appointment with Dr. Arata.
3. We will also discuss the chemoembolization process with Dr. Arata and move forward with that. They will fish a line to Gary's liver lesion and it will administer chemo directly to the lesion. THe chemo can stay in his liver for up to 30 days at a time!
4. We have a meeting with Dr. Kim on Thursday at 12:45 PM. He is our Radiation Oncologist at Hoag. Gary will receive radiation to his liver for 5 days straight. This radiation will target the lesion specifically unlike his last experience with radiation. (He had so many tumors in his pelvis that they were unable to target tumors specifically so they had to radiate the entire pelvic region). He will not start this round of radiation until next week.
Here is the deal. Gary's cancer is getting better and we have made significant progress in the regression of the tumors. If we can get his pain managed then I think it will make a HUGE difference for him.
Gary will not be receiving systemic chemo/Avastin as of right now. Until we win some of these other battles (weight gain, pain control, radiation) his body will need more of a break. The genetic marker that kind of identifies the cancer is showing very slow growth at this time. Therefore I think we are safe holding off a few more weeks to do the systemic stuff.
There you go! Sounds fun, huh????
BTW - Chicks is holding their tent sale starting Friday. If you go into the store right now everything that is going into the tent is in the store and priced for the tent sale! No waiting in the long lines on Friday if you go this week!
The kids went to the lake today to kayak and ride on the party boat!
Tomorrow they are off to surf anf body board at Riviera!
I am going to finish cleaning and watch a good movie!
God is my strength and my refuge. I am peaceful but Gary is not yet! Can you please pray for peace for Gary? Come on Laurie! You did it for me now make it happen for Gary!
Love and Hugs,
Lisa
Sunday, August 3, 2008
SUNDAY NIGHT
I already know I am in trouble. For those of you that are "addicted" to this blog I offer up my most sincere apologies for not updating sooner. Things have been a bit hectic and a little gloomy around here and when things are gloomy sometimes it is hard for me to write.
In recent days I feel like I am running out of steam. Gary and I feel helpless as we wait for an appointment with Dr. Barth - which by the way is not until THURSDAY! We thought we would be able to see him when we were released from USC. After spending 16 VERY IDLE days in the hospital we are anxious to move forward. Every day is long and awful when you are waiting to see where to go next.
Many people who have seen Gary know how painfully thin he looks. I told him that he looked like a concentration camp victim (in the nicest way of course). He has lost 20 pounds which puts him at 148 LB. It is a little scary.
He wants me to tell you that he is not feeling very good right now. He has serious discomfort in his pelvic area and his liver drain is really bothering him. He is weak and tired and sick of being sick.
Tonight he was actually doing better. He came to the pool - our home group came over to hang out, swim and have pizza. He sat downstairs for about 2 1/2 hours while we all hung out and ate. Everyone is gone (and I did not even need to pull a Stephanie) and we are going to put the kids to bed and watch a movie tonight. I am looking forward to that!
We are both ready for some good days. I am sick and tired of bad days. If I am ready for good days imagine what Gary is ready for!
We will see the nursing staff at Dr. Barth's tomorrow in the morning for counts and a dressing change on the liver drain. We are praying that his pain subsides and that we can get some answers and move forward.
Look, sometimes it is hard for me to write. I can't imagine how sick all of you are listening to me tell you about Gary's pain and Gary's discomfort and his weight loss and tubes and procedures and all the other crap. I hate drama probably more than anyone and I try to keep the entries as drama free as possible. Sometimes when I blog about things then the reality of how real they are comes to light and I have to take a step back and think about the direction our life has gone and it makes me sad. I don't like to dwell in sadness. Gary and I get sick of it and I hate to bore you with the details.
We remain faithful and know that God has this incredible plan for our lives. I am not upset or tormented or worried or unsure. I am firm in my belief that God loves us and wants the best for us. He does not want harm to come our way and he only gives us what we can handle. I wonder sometimes if we can handle all of this and then I realize with the strength that comes ONLY from God we are in the midst of doing just that!
Please hang in there with us. We LOVE your prayers. We need them.
We love all of you.
Love,
Lisa & Gary
In recent days I feel like I am running out of steam. Gary and I feel helpless as we wait for an appointment with Dr. Barth - which by the way is not until THURSDAY! We thought we would be able to see him when we were released from USC. After spending 16 VERY IDLE days in the hospital we are anxious to move forward. Every day is long and awful when you are waiting to see where to go next.
Many people who have seen Gary know how painfully thin he looks. I told him that he looked like a concentration camp victim (in the nicest way of course). He has lost 20 pounds which puts him at 148 LB. It is a little scary.
He wants me to tell you that he is not feeling very good right now. He has serious discomfort in his pelvic area and his liver drain is really bothering him. He is weak and tired and sick of being sick.
Tonight he was actually doing better. He came to the pool - our home group came over to hang out, swim and have pizza. He sat downstairs for about 2 1/2 hours while we all hung out and ate. Everyone is gone (and I did not even need to pull a Stephanie) and we are going to put the kids to bed and watch a movie tonight. I am looking forward to that!
We are both ready for some good days. I am sick and tired of bad days. If I am ready for good days imagine what Gary is ready for!
We will see the nursing staff at Dr. Barth's tomorrow in the morning for counts and a dressing change on the liver drain. We are praying that his pain subsides and that we can get some answers and move forward.
Look, sometimes it is hard for me to write. I can't imagine how sick all of you are listening to me tell you about Gary's pain and Gary's discomfort and his weight loss and tubes and procedures and all the other crap. I hate drama probably more than anyone and I try to keep the entries as drama free as possible. Sometimes when I blog about things then the reality of how real they are comes to light and I have to take a step back and think about the direction our life has gone and it makes me sad. I don't like to dwell in sadness. Gary and I get sick of it and I hate to bore you with the details.
We remain faithful and know that God has this incredible plan for our lives. I am not upset or tormented or worried or unsure. I am firm in my belief that God loves us and wants the best for us. He does not want harm to come our way and he only gives us what we can handle. I wonder sometimes if we can handle all of this and then I realize with the strength that comes ONLY from God we are in the midst of doing just that!
Please hang in there with us. We LOVE your prayers. We need them.
We love all of you.
Love,
Lisa & Gary
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