Posts
This is long. Sorry.
I missed church this morning and I hate missing church. I love being there every Sunday regardless of what is going on with Gary. It renews me and I love seeing all of the kids and their families! Besides, we had family church and we were playing some pretty cool games today.
Jax spent the night at the hospital with Gary and I and he is still here. He did not want to go to the beach with Robin and the boys. I think he needs some Mommy & Daddy time.
On Friday night Gary had fevers throughout the night but he seemed to be a bit more comfortable last night. I think adding that Robaxin and Marinol has helped to do the trick. We will see how long it lasts.
The team of doctors delivered some news yesterday that was disturbing yet not completely shocking.
Gary is hanging in there and basically fighting for his life right now and he is mentally preparing himself for a war – Gary vs. cancer and ALL of its complications and nastiness.
Gary has many issues and cancer is just one of them. All of the other complications/issues are stemming from the treatment we have done thus far to try to combat the cancer.
His cancer in his pelvis is holding and has not grown. The cancer in his liver has grown but has not caused any major complications yet. The hope is to be able to get the chemo on board and start the SBRT radiation next week to shrink those lesions and get rid of the cancer in his liver. He has infections and he is weak and his liver has 2 lesions and he is suffering fevers and sweats and massive bouts of pain.
Yesterday we sedated him pretty heavily. He was basically unaware for a good part of the day and night with the exception of a few conversations. I would much rather see him out of it for a good part of the day than to watch him struggle with severe uncontrollable pain.
Dr. Barth came in yesterday to make sure that Gary wanted to fight. Gary said he was going to fight so Dr. Barth has ordered 4 different chemotherapy agents for Gary. He had 1 Saturday (Methotrexate) and will be inundated with the other 3 today (Taxotere, Doxorubicin & Vinblastin). He has never had any of these chemo agents so everything is new – symptoms, side effects, etc… Anytime you do chemo there are risks.
I think these thoughts…….If the cancer is holding why are we facing possible death? If he has infections just keep zapping him with antibiotics, right? We will get him eating and make him get out of bed to build up his strength. It seems so textbook.
I listen and try to gain a better understanding as to what we are up against.
If you had an infection in your body (we’ll say a staff infection) you would treat it with antibiotics and fluids and get better. If you have cancer and the cancer you move forward with chemo and radiation to retard the growth and gain control.
If you take those issues separately we would have a great chance for Gary to heal and his body to be able to fight. But, because all of these things are happening at the same time it makes everything extremely risky and complicated.
There is such a thing as over treating the body with antibiotics that can cause a whole host of nasty problems. The pain meds complicate treatment as well. The infection(s) are going on while we are trying to control the cancer with heavy chemo. Chemo is a risk in itself without having multiple infections in the body. Chemo kills the body’s ability to fight infection and each chemo agent has a list a page long on all of the side effects and drug interactions. It is messy.
This morning Gary had some tests done on his heart to make sure everything was working properly. All the tests came back great. Dr. Barth is brilliant and he obviously did not feel that these tests were necessary but I wanted to know that we checked everything out before we blast Gary so I don’t ever look back and say I wish I would have…….. It was more for my peace of mind than anything.
We had a conversation late last night about what we are now facing and I hope and pray to God that none of you ever have to have these talks that Gary and I are now having. We are preparing ourselves for the absolute worst and we are still hoping and praying for the best.
We sat down yesterday and started to write a letter to the boys. (If Gary dies) We talked about what I should do immediately following his death with the boys as far as school and time off. We both agreed that I needed to call Ann Corwin this week and talk with her about how to handle this possibility with the boys.
13 years ago when we both said “I Do” we never in a million years imagined this for our lives. We both envisioned being together always. We would grow old together and play with our grandkids and travel all over the world. We have talked about doing missions work together and to begin exposing our kids to that at an earlier age so that they didn’t think that living in OC was the way that everyone lived. We have so many plans for our future together. It is very difficult to stomach not being able to do those very things together.
The great news is that Gary is still fighting and we are all still praying. Cancer does not kill everyone it gets a hold of. Cancer can be a funny thing. One minute it is there and the next moment it can disappear. Gary is a fighter and he will fight on and hopefully kick cancer in the butt just like USC did to Virginia! Go SC!!!
Besides his pain, he always manages to muster up a smile and make some sort of wisecrack! He really should be the poster man for strength and perseverance and courage and bravery. He has had to endure far more than most people as far as daily suffering goes.
I dedicate this blog entry to my husband who I love more than words. He is my best friend and God has blessed me with our marriage and our 3 beautiful boys. We have had 12 amazing years together and I hope and pray we get at least another 12 (I am really hoping for a heck of a lot more than that!).
Keep praying and have faith that no matter what God is always there and He never leaves any of His children!
Have a wonderful Sunday and a safe Labor Day!
All our Love,
L
Sunday, August 31, 2008
Thursday, August 28, 2008
Out Like A Light
It is 5:45 PM and Gary is still out like a light!
He went in for a procedure at 11 AM and he is still out. He has always had a difficult time waking from any kind of sedation and this is no exception.
At the last minute the docs decided to give Gary a nerve block to try to control the sciatic pain. I am exhausted because we were up all night last night with Gary. Watching him in excruciating pain day after day and night after night must be taking its toll on the docs and the nurses! I think they figured enough was enough.
It is hard to say if it worked or not because he is still out of it. At least he is catching up on some zzzzzzzz's.
They just injected the white cells back into his body this morning and they will scan him around 2 PM tomorrow. We will have the results soon thereafter.
Robin took the boys to the Montage and then to 36th street for some body boarding today. They just left the hospital and are on their way to the Claim Jumper for yummy food and of course the famous Chocolate Chip Calzone! Thank God for Robin. She takes such great care of the boys and they love having both her and Alex here!
I am going to go back up to the room and wait for Gary to finally wake up. I hope we have a better night tonight.
Dr. Barth, Dr. Phan and Dr. Le should all be in for a visit tonight so we will make sure everything is on track.
I feel so disgusting as I have only washed my hair 1X in the past week (don't worry - I have not missed 1X shaving my legs!). It takes so stinking long to wash my hair, dry it and do it and frankly I am way too tired. I will be forced to do that tomorrow I guess.
Thank you for your prayers and love. We are so blessed by all of you!
Love and Hugs!!!
L
He went in for a procedure at 11 AM and he is still out. He has always had a difficult time waking from any kind of sedation and this is no exception.
At the last minute the docs decided to give Gary a nerve block to try to control the sciatic pain. I am exhausted because we were up all night last night with Gary. Watching him in excruciating pain day after day and night after night must be taking its toll on the docs and the nurses! I think they figured enough was enough.
It is hard to say if it worked or not because he is still out of it. At least he is catching up on some zzzzzzzz's.
They just injected the white cells back into his body this morning and they will scan him around 2 PM tomorrow. We will have the results soon thereafter.
Robin took the boys to the Montage and then to 36th street for some body boarding today. They just left the hospital and are on their way to the Claim Jumper for yummy food and of course the famous Chocolate Chip Calzone! Thank God for Robin. She takes such great care of the boys and they love having both her and Alex here!
I am going to go back up to the room and wait for Gary to finally wake up. I hope we have a better night tonight.
Dr. Barth, Dr. Phan and Dr. Le should all be in for a visit tonight so we will make sure everything is on track.
I feel so disgusting as I have only washed my hair 1X in the past week (don't worry - I have not missed 1X shaving my legs!). It takes so stinking long to wash my hair, dry it and do it and frankly I am way too tired. I will be forced to do that tomorrow I guess.
Thank you for your prayers and love. We are so blessed by all of you!
Love and Hugs!!!
L
Wednesday, August 27, 2008
A Better Day
So, last night Nate and I arrive at the hospital. Nate had KFC for dinner and then proceeded to eat 3 HUGE chocolate chips cookies, a carton of Dibs ice cream, animal cookies and 2 sprites. Can anyone guess what I spent a portion of my evening doing? That's right. Standing behind Nate as he threw up in the toilet in Gary's hospital room! It was my fault because I allowed him to eat so much junk food. I felt really bad. After about 10 minutes of being "the perfect puker" Nate took a hot shower and felt 100% better! What a champ!!! We played "Gorilla, Man, Gun" and Nate belly laughed so hard and that brought HUGE smiles to Gary's face!
We had a little bit of a better day today with Gary. Gary ate a little more and actually took about 15 steps to sit in the chair for about an hour. His pain seems to be just a little better. When we threatened to give him his Tylenol by supository tonight he actually smiled. Zach got to spend a good part of the day with Gary and the three of us had a great time.
Gary has been running a fever. The ID doc (Dr. Fee) thinks it might be tumor related but Dr. Barth thinks it might be an infection that is hiding somewhere in his abdomen. Tomorrow they will begin a test that takes about 3 days to determine if indeed there is an infection.
DESCRIPTION OF THE WBC SCAN
A WBC scan is a nuclear scan in which a radioactive material is attached to a sample of white blood cells. It is done to locate areas of infection or inflammation.
Blood will be taken from one of Gary's veins. White blood cells are separated from the rest of the blood sample and then mixed with a small amount of a radioactive material (radioisotope) called indium-111. The cells with the radioactive material are considered "tagged."
About 2 or 3 hours later, the tagged white blood cells are returned to Gary's body through injection into his vein. The tagged cells gather in areas of inflammation or infection.
Approximately 6 to 24 hours later, Gary's body will be scanned. The scanner looks like an x-ray machine. It detects the radiation given off by the radioactive white blood cells. A computer converts the detected radiation into an image that can be viewed on a screen or recorded on film. The scan takes about 1 or 2 hours.
Pretty cool, Huh? Hopefully this test will help Dr. Barth to narrow down the possible causes of the fevers.
Thank you to everyone who has made and sent cards to Gary! I am starting to fill up 1 part of his wall so keep them coming!
I need to get to bed soon. I think tomorrow will be a busy day for us.
Pray for Gary to have a peaceful slumber and an even better day tomorrow!
All our love,
L
We had a little bit of a better day today with Gary. Gary ate a little more and actually took about 15 steps to sit in the chair for about an hour. His pain seems to be just a little better. When we threatened to give him his Tylenol by supository tonight he actually smiled. Zach got to spend a good part of the day with Gary and the three of us had a great time.
Gary has been running a fever. The ID doc (Dr. Fee) thinks it might be tumor related but Dr. Barth thinks it might be an infection that is hiding somewhere in his abdomen. Tomorrow they will begin a test that takes about 3 days to determine if indeed there is an infection.
DESCRIPTION OF THE WBC SCAN
A WBC scan is a nuclear scan in which a radioactive material is attached to a sample of white blood cells. It is done to locate areas of infection or inflammation.
Blood will be taken from one of Gary's veins. White blood cells are separated from the rest of the blood sample and then mixed with a small amount of a radioactive material (radioisotope) called indium-111. The cells with the radioactive material are considered "tagged."
About 2 or 3 hours later, the tagged white blood cells are returned to Gary's body through injection into his vein. The tagged cells gather in areas of inflammation or infection.
Approximately 6 to 24 hours later, Gary's body will be scanned. The scanner looks like an x-ray machine. It detects the radiation given off by the radioactive white blood cells. A computer converts the detected radiation into an image that can be viewed on a screen or recorded on film. The scan takes about 1 or 2 hours.
Pretty cool, Huh? Hopefully this test will help Dr. Barth to narrow down the possible causes of the fevers.
Thank you to everyone who has made and sent cards to Gary! I am starting to fill up 1 part of his wall so keep them coming!
I need to get to bed soon. I think tomorrow will be a busy day for us.
Pray for Gary to have a peaceful slumber and an even better day tomorrow!
All our love,
L
Monday, August 25, 2008
Anchors Away
I am back and better than ever! I sank my anchor....................... right into a BIG FAT martini!!!!!!!
Relax. I am just kidding although a nice girls night out with a martini would be a welcome evening!
I am overwhelmed with the amazingly nice things everyone writes about me. My strength. My perserverence. My faith. My attitude. The way I juggle my schedule and still manage to keep up with everything. It is all so incredibly nice but I can't take the kudos for it. I want to tell you my secret.
It has nothing to do with me. Every single bit of everything that makes me who I am comes from God.
Every moment of every day I am defined by who I am in Christ.
So, when I share with you that I am frazzled or scared or whatever I am just having a "Lisa moment" and trust me when I tell you that those moments don't last long but they are extremely healthy for me to have.
I have never ever once lost faith or sight of God during this struggle. I am never angry or mad. I always seek His face and He is the one that reels me in and anchors me.
Guess what? The SBRT radiation treatment was approved! Don't ask me how but I will tell you that Piay from Dr. Barth's office is amazing and she always works it!! Dr. Barth was very pleased that this was approved and we are moving forward this week with the treatment!
As Gary gains strength he will be able to withstand more treatment. He will be able to have the liver chemoembolized. Also, Dr. Barth does not think that the pelvic tumor growth is even tumor growth. He disagrees with the radiologists findings and believes it is possibly inflammation or something else so that was some more good news!
Good news is pouring out everywhere for us tonight! What a difference a few hours can make. Cancer is like the weather in the Ohio River Valley. Give it 5 minutes and it is sure to change.
I want to thank everyone who wanted to be a part of raising the funds necessary to provide Gary with the radiation treatment. You all amaze me every day. Don't look at us in amazement but instead look at yourselves and know how amazing we think all of you are!!
Keep those prayers coming! I can hardly wait to go to bed to wake up in the morning with the bed spring imprint on my body! Nice cots Hoag has! :)
Love,
L
Relax. I am just kidding although a nice girls night out with a martini would be a welcome evening!
I am overwhelmed with the amazingly nice things everyone writes about me. My strength. My perserverence. My faith. My attitude. The way I juggle my schedule and still manage to keep up with everything. It is all so incredibly nice but I can't take the kudos for it. I want to tell you my secret.
It has nothing to do with me. Every single bit of everything that makes me who I am comes from God.
Every moment of every day I am defined by who I am in Christ.
So, when I share with you that I am frazzled or scared or whatever I am just having a "Lisa moment" and trust me when I tell you that those moments don't last long but they are extremely healthy for me to have.
I have never ever once lost faith or sight of God during this struggle. I am never angry or mad. I always seek His face and He is the one that reels me in and anchors me.
Guess what? The SBRT radiation treatment was approved! Don't ask me how but I will tell you that Piay from Dr. Barth's office is amazing and she always works it!! Dr. Barth was very pleased that this was approved and we are moving forward this week with the treatment!
As Gary gains strength he will be able to withstand more treatment. He will be able to have the liver chemoembolized. Also, Dr. Barth does not think that the pelvic tumor growth is even tumor growth. He disagrees with the radiologists findings and believes it is possibly inflammation or something else so that was some more good news!
Good news is pouring out everywhere for us tonight! What a difference a few hours can make. Cancer is like the weather in the Ohio River Valley. Give it 5 minutes and it is sure to change.
I want to thank everyone who wanted to be a part of raising the funds necessary to provide Gary with the radiation treatment. You all amaze me every day. Don't look at us in amazement but instead look at yourselves and know how amazing we think all of you are!!
Keep those prayers coming! I can hardly wait to go to bed to wake up in the morning with the bed spring imprint on my body! Nice cots Hoag has! :)
Love,
L
Monday
Good afternoon. I was able to come home quickly to get mail and water the yard while Todd and Gary's buddies from Home Group are visiting.
Gary was moved last night to Room 834. It is bigger but someone has run off with the pull out sofa and so Stacy is bringing me an aerobed so that the boys can spend the night with their Daddy.
I won't bore you with the awful details but I arrived at the hospital last night to find out that Gary had a horrible day with a level 10+ pain. He ended up having a CT Scan yesterday morning and we got the results.
His cancer is growing. At an alarming rate? Not sure. I have only spoken with the Internal Medicine Doc and not any of the other doctors. Dr. Barth will be in tonight and I am sure we will go over everything.
His tumor mass in the left pelvic region has grown 1.4 cm. The lesion on the liver is growing faster. It has gone from 3.2 cm to 5.4 cm and another 1.4 cm lesion has appeared.
I have to stop talking about this right now because I am starting to get sick to my stomach and I already have a stress migraine.
I just wanted to fill you in quickly. I will write more tonight or tomorrw morning after we speak to all of the doctors.
I have a call into the radiation oncologist - Dr. Brian Kim - to see how quickly we need to move on the chemoembolization/SBRT treatment and to also see if both of these are still in the plan as the most effective way to stop the cancer.
Please pray for me. I am really scared right now. No one can fix me or offer me advice or tell me stories to make it better. I don't need that. I don't need people trying to make me feel better because no one can do that for me right now. I just need to have time with myself to figure out how to and where to sink my anchor again. I am temporarily drifting and I think sometimes that is probably good because whenever I drift I seem to gain a new perspective. I pray that I get that new perspective quickly.
I am outta here! Off to the post office to get all the mail I have not bothered to get in weeks. More depressing bills and collectors and whatever! Hopefully, some fun cards as well!
Love, L
Gary was moved last night to Room 834. It is bigger but someone has run off with the pull out sofa and so Stacy is bringing me an aerobed so that the boys can spend the night with their Daddy.
I won't bore you with the awful details but I arrived at the hospital last night to find out that Gary had a horrible day with a level 10+ pain. He ended up having a CT Scan yesterday morning and we got the results.
His cancer is growing. At an alarming rate? Not sure. I have only spoken with the Internal Medicine Doc and not any of the other doctors. Dr. Barth will be in tonight and I am sure we will go over everything.
His tumor mass in the left pelvic region has grown 1.4 cm. The lesion on the liver is growing faster. It has gone from 3.2 cm to 5.4 cm and another 1.4 cm lesion has appeared.
I have to stop talking about this right now because I am starting to get sick to my stomach and I already have a stress migraine.
I just wanted to fill you in quickly. I will write more tonight or tomorrw morning after we speak to all of the doctors.
I have a call into the radiation oncologist - Dr. Brian Kim - to see how quickly we need to move on the chemoembolization/SBRT treatment and to also see if both of these are still in the plan as the most effective way to stop the cancer.
Please pray for me. I am really scared right now. No one can fix me or offer me advice or tell me stories to make it better. I don't need that. I don't need people trying to make me feel better because no one can do that for me right now. I just need to have time with myself to figure out how to and where to sink my anchor again. I am temporarily drifting and I think sometimes that is probably good because whenever I drift I seem to gain a new perspective. I pray that I get that new perspective quickly.
I am outta here! Off to the post office to get all the mail I have not bothered to get in weeks. More depressing bills and collectors and whatever! Hopefully, some fun cards as well!
Love, L
Sunday, August 24, 2008
Sunday Review
Good Afternoon. I have to head out to Lake Mission Viejo to enjoy a beautiful afternoon with all of our friends from our home group! The kids are so excited that I am coming with them! They have slept over at so many different homes that I am losing track of them a little! I need some reconnection time.
I wanted to give you an update on Gary's liver. I told you that Aetna denied our request to have this special radiation that Gary needs. Well, one of our friends at church would like to raise the monies needed to be able to get this treatment for Gary! I was overwhelmed with the fact that he had actually spent time thinking about how to raise money for Gary. I just want to thank him for keeping our family so close in thought and prayer.
Another one of my girlfriends had suggested that we picket Aetna and do a newspaper story on Gary and the unwillingness of the company. I liked that idea but then Gary was not thrilled. His fear is that if we go full steam and picket and expose Aetna then somehow they will manage to find some kind of technicality to drop Gary from his policy and we can't afford for that to happen!
So, we will wait and see what happens. I am checking tomorrow after Gary has the CT Scan on his liver to see how quickly he could have the SBRT radiation therapy. I know as of a few weeks ago it was fairly urgent and then all of this happened. I swear - it is so confusing when things change all the time!
In the meantime, Gary is quite uncomfortable and we are still in our "broom closet" Hoag calls a room. We are waiting patiently for a bigger room to open up so that the boys can actually hang out with their dad and even spend the night!
Please keep us in your prayers.
Pray that if it is possible to raise the money for the SBRT then God provides that way.
Pray that the cancer is not out of control - we will know after the CT tomorrow.
Pray for Gary's anxiety to subside so that he can focus on getting better and coming home!
Pray for sleep for both of us!
We love you all and Happy Sunday!
Lisa
PS - no time for spell check so sorry!
I wanted to give you an update on Gary's liver. I told you that Aetna denied our request to have this special radiation that Gary needs. Well, one of our friends at church would like to raise the monies needed to be able to get this treatment for Gary! I was overwhelmed with the fact that he had actually spent time thinking about how to raise money for Gary. I just want to thank him for keeping our family so close in thought and prayer.
Another one of my girlfriends had suggested that we picket Aetna and do a newspaper story on Gary and the unwillingness of the company. I liked that idea but then Gary was not thrilled. His fear is that if we go full steam and picket and expose Aetna then somehow they will manage to find some kind of technicality to drop Gary from his policy and we can't afford for that to happen!
So, we will wait and see what happens. I am checking tomorrow after Gary has the CT Scan on his liver to see how quickly he could have the SBRT radiation therapy. I know as of a few weeks ago it was fairly urgent and then all of this happened. I swear - it is so confusing when things change all the time!
In the meantime, Gary is quite uncomfortable and we are still in our "broom closet" Hoag calls a room. We are waiting patiently for a bigger room to open up so that the boys can actually hang out with their dad and even spend the night!
Please keep us in your prayers.
Pray that if it is possible to raise the money for the SBRT then God provides that way.
Pray that the cancer is not out of control - we will know after the CT tomorrow.
Pray for Gary's anxiety to subside so that he can focus on getting better and coming home!
Pray for sleep for both of us!
We love you all and Happy Sunday!
Lisa
PS - no time for spell check so sorry!
Friday, August 22, 2008
Dr. Barth
It is Friday night and I am sitting on the floor on the 1st floor at Hoag where I can manage to get Wi-Fi clearly.
I hope everyone is doing well and getting ready to enjoy a wonderfully hot weekend!
My Dad left and the boys are being entertained by dear friends tonight and tomorrow night and the next night and the next so that I can be with Gary overnight.
Gary’s parents are here and they will be here until Monday. They have been keeping Gary company during the day. At this point Gary needs someone to be with him 24 hours a day until he gets stronger and more aware of what he requires.
Well, Dr. Barth just left. He gave us some news that is not good but it did not seem to phase Gary so I have not brought it up to him. He told us that our Aetna PPO denied the SBRT (radiation treatment) that is needed for Gary’s liver. There is apparently no other radiation option due to the potential dangers to Gary’s vital organs that are near the liver.
I was hoping and praying that Aetna would approve this needed treatment. My cynical mind wanders and I get pissed when I think that Aetna could be denying us this crucial treatment because they think that there is no hope for Gary to survive. I know the medical directors are not idiots. If traditional radiation would possible kill him then why would they not approve this safe and effective treatment? It makes no sense. They have shelled out hundreds of thousands of dollars on Gary thus far and a measly $30,000 doesn’t seem like much!
Dr. Barth shared with us that the only other option is to administer chemo directly to the liver through chemoembolism. Unfortunately, Gary is not strong enough to withstand that right now.
So, here is what needs to happen to get the cancer treatment rolling.
1. We need to help Gary drink and eat throughout the day. Soft foods and lots of liquids.
2. We need to help Gary to start getting out of bed and really pushing himself harder. I know it sounds awful but time is of the essence and the more Gary focuses on getting better and pushing himself the closer we get to actually treating the cancer.
3. Gary needs to use his breathing device to get the gunk out of his lungs and to prevent infection from setting in.
4. Gary needs to stay positive and focused on the big picture.
When Dr. Barth was in tonight Gary told him that he was glad that he chose to fight because the operation was not as bad as he thought it was going to be! He was quite proud of himself! How dare Dr. Barth give him the option of laying down and dying!
Most days I can hardly believe that I am sitting on the 8th floor with Gary and we are fighting a new front to this disgusting disease. I look at Gary and I can’t possibly fathom losing him.
GARY NEEDS CARDS AGAIN
I know it is a lot to ask but his room has white walls and you know how I feel about white walls. If everyone could send cards to the church again that would be so great! If you know my home address then please send the cards to my home. I just don’t like putting my home address out on the internet for all to see!
GARY SALLEE
C/O Mountain View Church
PO BOX 2058
MV, Ca. 92690
Thanks everyone! I am going to watch What Not To Wear and to try and not think about what it means to not be able to have this much needed radiation therapy. Maybe I am the one who needs the valium!
Love and Hugs,
L
I hope everyone is doing well and getting ready to enjoy a wonderfully hot weekend!
My Dad left and the boys are being entertained by dear friends tonight and tomorrow night and the next night and the next so that I can be with Gary overnight.
Gary’s parents are here and they will be here until Monday. They have been keeping Gary company during the day. At this point Gary needs someone to be with him 24 hours a day until he gets stronger and more aware of what he requires.
Well, Dr. Barth just left. He gave us some news that is not good but it did not seem to phase Gary so I have not brought it up to him. He told us that our Aetna PPO denied the SBRT (radiation treatment) that is needed for Gary’s liver. There is apparently no other radiation option due to the potential dangers to Gary’s vital organs that are near the liver.
I was hoping and praying that Aetna would approve this needed treatment. My cynical mind wanders and I get pissed when I think that Aetna could be denying us this crucial treatment because they think that there is no hope for Gary to survive. I know the medical directors are not idiots. If traditional radiation would possible kill him then why would they not approve this safe and effective treatment? It makes no sense. They have shelled out hundreds of thousands of dollars on Gary thus far and a measly $30,000 doesn’t seem like much!
Dr. Barth shared with us that the only other option is to administer chemo directly to the liver through chemoembolism. Unfortunately, Gary is not strong enough to withstand that right now.
So, here is what needs to happen to get the cancer treatment rolling.
1. We need to help Gary drink and eat throughout the day. Soft foods and lots of liquids.
2. We need to help Gary to start getting out of bed and really pushing himself harder. I know it sounds awful but time is of the essence and the more Gary focuses on getting better and pushing himself the closer we get to actually treating the cancer.
3. Gary needs to use his breathing device to get the gunk out of his lungs and to prevent infection from setting in.
4. Gary needs to stay positive and focused on the big picture.
When Dr. Barth was in tonight Gary told him that he was glad that he chose to fight because the operation was not as bad as he thought it was going to be! He was quite proud of himself! How dare Dr. Barth give him the option of laying down and dying!
Most days I can hardly believe that I am sitting on the 8th floor with Gary and we are fighting a new front to this disgusting disease. I look at Gary and I can’t possibly fathom losing him.
GARY NEEDS CARDS AGAIN
I know it is a lot to ask but his room has white walls and you know how I feel about white walls. If everyone could send cards to the church again that would be so great! If you know my home address then please send the cards to my home. I just don’t like putting my home address out on the internet for all to see!
GARY SALLEE
C/O Mountain View Church
PO BOX 2058
MV, Ca. 92690
Thanks everyone! I am going to watch What Not To Wear and to try and not think about what it means to not be able to have this much needed radiation therapy. Maybe I am the one who needs the valium!
Love and Hugs,
L
Thursday, August 21, 2008
INFORMATION OVERLOAD
So much information............I promised a detailed update.
I have so much to get all of you caught up on so bear with me. I will title each section so you can jump around or just read whatever seems interesting to you at the time.
The past few days have been emotionally draining. I have had very little sleep since Sunday night. Lets see – 0+1+7+3= 11 hours of sleep since Sunday night. That is clearly not enough sleep. I am so tired that I sometimes get nauseated and I can’t eat. Tonight I plan on getting at least a little more sleep hopefully.
JAXISM
So, we are at the Old Spaghetti Factory tonight and Jax and I start talking about school. It is my Dad's last night in town and Gary's parents, the boys, my Dad and I spent a little time together. I was going to stay at the hospital but Gary was more alert so we left him alone for about an hour. Here is the conversation I had with Jax. Short and sweet.
ME: Jax, I am so excited you are starting 1st grade. You are going to learn so much and you will really learn to read a lot better. You are going to have to work hard on your reading.
JAX: (eyes rolling back into his head and dead serious) Why don’t you just go ahead and expel me now!
Every single day I wonder how much trouble we are going to be in as Jax gets older and even smarter than he is now!
Gary ICU TRANSFER TO 8TH ONCOLOGY FLOOR
Let me start by saying that Hoag is a wonderful hospital. Our care has always been top notch here and the staff has always gone the extra mile. With that being said I can go ahead and fill you in.
It is 2 AM Tuesday and the transport team comes in to take Gary to his room. 2 AM? What’s up with that? Gary was FINALLY sound asleep after a very long, hard day.
The transport team was comprised of 2 men who were less than careful with Gary. They were very rough as they put him into the new bed. Take in mind he does have a 12 inch OPEN abdominal incision people.
Once we get him in the elevator we find out that he is being transferred to the 8th floor and not the 6th. The 6th floor is sub-ICU and they are basically a surgical floor. The 8th floor is the oncology floor. While it is true that Gary has cancer right now this is not the issue we are dealing with.
Gary’s nurse is very sweet but it is obvious from the start that she does not have experience caring for someone who is post-op. It is also obvious that the aids have no clue what to do with Gary either. His nurse is a wonderful nurse who can care for cancer patients in a very upbeat and amazing way but like I said before we are not here for Gary’s cancer.
INCISION
Let’s face it. Gary’s open abdominal incision is pretty scary looking. It is held together by 3 retention bars and is open in between. I can see his insides – intestines and all!
So, for a nursing staff that is not used to dealing with wounds of this nature I bet it would be very intimidating.
Changing his dressing and packing it is quite uncomfortable as you can probably imagine. However, when the wound was cared for in the ICU Gary was in much less pain and discomfort. Now that we are on the 8th floor the dressing change became this HUGE ordeal and extremely painful for Gary to go through.
Let’s move ahead to the next morning.
CONVERSATION WITH THE DOCTOR (one of the many doctors)
The internal med doc comes in and we tell her that we are concerned about being on the 8th floor. We tell her that we think the nurses are nice and wonderful but not equipped to handle all the things Gary has going on. She agrees with us and said she had requested Gary to be placed on the 6th floor but there were no beds available for him and this is why he is on the 8th floor. She tells us that we are waiting still for a bed to open up.
Fast forward to last night
Our night nurse comes in (the really nice one who struggles with providing Gary with the care he needs) and confronts Gary. She tells him that she is aware that he does not want her as his nurse and does he want her to be reassigned to another patient? ARE YOU KIDDING ME? First of all, THAT IS BEYOND INAPPROPRIATE and UNPROFESSIONAL.
Did I ever say we wanted another nurse? NEVER. The only things we said is that we thought Gary would have much better care on the 6th floor given this huge surgery he has just undergone. It is like being a car salesman. If you have Ferraris and Mini Vans on the same lot and you ONLY sell Ferraris you might be in big trouble if the boss asks you to go sell Mini Vans! I bet the training would be completely different. It is the same in this case.
Besides, Gary is TOTALLY drugged out of his mind and is incapable of answering that question much less being asked the stupid question in the first place!
Who’s the idiot who told his nurse that we didn’t want her and then sent her into our room to confront us and ask us? I was mortified and so incredibly angry. Like I said the nurse is lovely and nice and fun and I never said anything ill about her. The chain of command here should be embarrassed by their behavior.
SOCIAL WORKER
So, in light of the above story I went ahead and contacted the Social Worker that is assigned to us through the hospital. I wanted her to know how awful I thought it was that information was so grossly miscommunicated and that they handled it so poorly.
I hate having to manage Gary’s care – especially in the hospital. We are still waiting on a bigger room for Gary and I bet now that we have kinda created a little bit of a scuttlebutt we probably will be damned to this tiny room for the length of our stay.
Jax is here with me spending the night on the cot. Picture the cot – about 6 feet long and about 30 inches wide. We are both somehow going to fit on this cot and sleep? We will see.
GARY IN GENERAL
Gary has made leaps and bounds over the past few days. His infection is getting better and his wound is looking great. His body parts are beginning to work and heal. The only thing we are still working on is controlling the pain and dealing with his intense anxiety. We will meet with docs tomorrow to talk about his liver surgery (to stint the bile duct) and with the psychiatrist to try to help him head of any extra anxiety he has so that he can concentrate on getting better and healing.
DEEP THOUGHTS
Gary has been through an incredible ordeal over the past 18 months. He has had MAJOR surgeries and countless chemo treatments and radiation that has caused irreversible damage to his body and the list goes on and on.
Still, while praying, he manages to thank God for all of you and he also thanks God for allowing him to have cancer so that he can hopefully touch lives through it.
That being said, enough is enough.!! We keep praying with faith and repetition for healing and complete earthly restoration to Gary’s mind and body. God is good.
Gary has been talking about how much he misses working. He loved his job and he looked forward to going to work every day. I am looking forward to the day when he can go back to work and work for someone who really appreciates him. It still irks me that his old boss never calls him or comes to see him. Gary worked for him for 2 years and I was under the impression that he liked Gary. Gary is pissed that I am talking about this so I will drop it.
CONCLUSION
Anything else? Who reads this thing anyhow? If I am restless and can’t sleep then I will write again.
Off to a sound slumber. Yeah, right! Move over Jax and Gary better behave tonight!
Love,
L
I have so much to get all of you caught up on so bear with me. I will title each section so you can jump around or just read whatever seems interesting to you at the time.
The past few days have been emotionally draining. I have had very little sleep since Sunday night. Lets see – 0+1+7+3= 11 hours of sleep since Sunday night. That is clearly not enough sleep. I am so tired that I sometimes get nauseated and I can’t eat. Tonight I plan on getting at least a little more sleep hopefully.
JAXISM
So, we are at the Old Spaghetti Factory tonight and Jax and I start talking about school. It is my Dad's last night in town and Gary's parents, the boys, my Dad and I spent a little time together. I was going to stay at the hospital but Gary was more alert so we left him alone for about an hour. Here is the conversation I had with Jax. Short and sweet.
ME: Jax, I am so excited you are starting 1st grade. You are going to learn so much and you will really learn to read a lot better. You are going to have to work hard on your reading.
JAX: (eyes rolling back into his head and dead serious) Why don’t you just go ahead and expel me now!
Every single day I wonder how much trouble we are going to be in as Jax gets older and even smarter than he is now!
Gary ICU TRANSFER TO 8TH ONCOLOGY FLOOR
Let me start by saying that Hoag is a wonderful hospital. Our care has always been top notch here and the staff has always gone the extra mile. With that being said I can go ahead and fill you in.
It is 2 AM Tuesday and the transport team comes in to take Gary to his room. 2 AM? What’s up with that? Gary was FINALLY sound asleep after a very long, hard day.
The transport team was comprised of 2 men who were less than careful with Gary. They were very rough as they put him into the new bed. Take in mind he does have a 12 inch OPEN abdominal incision people.
Once we get him in the elevator we find out that he is being transferred to the 8th floor and not the 6th. The 6th floor is sub-ICU and they are basically a surgical floor. The 8th floor is the oncology floor. While it is true that Gary has cancer right now this is not the issue we are dealing with.
Gary’s nurse is very sweet but it is obvious from the start that she does not have experience caring for someone who is post-op. It is also obvious that the aids have no clue what to do with Gary either. His nurse is a wonderful nurse who can care for cancer patients in a very upbeat and amazing way but like I said before we are not here for Gary’s cancer.
INCISION
Let’s face it. Gary’s open abdominal incision is pretty scary looking. It is held together by 3 retention bars and is open in between. I can see his insides – intestines and all!
So, for a nursing staff that is not used to dealing with wounds of this nature I bet it would be very intimidating.
Changing his dressing and packing it is quite uncomfortable as you can probably imagine. However, when the wound was cared for in the ICU Gary was in much less pain and discomfort. Now that we are on the 8th floor the dressing change became this HUGE ordeal and extremely painful for Gary to go through.
Let’s move ahead to the next morning.
CONVERSATION WITH THE DOCTOR (one of the many doctors)
The internal med doc comes in and we tell her that we are concerned about being on the 8th floor. We tell her that we think the nurses are nice and wonderful but not equipped to handle all the things Gary has going on. She agrees with us and said she had requested Gary to be placed on the 6th floor but there were no beds available for him and this is why he is on the 8th floor. She tells us that we are waiting still for a bed to open up.
Fast forward to last night
Our night nurse comes in (the really nice one who struggles with providing Gary with the care he needs) and confronts Gary. She tells him that she is aware that he does not want her as his nurse and does he want her to be reassigned to another patient? ARE YOU KIDDING ME? First of all, THAT IS BEYOND INAPPROPRIATE and UNPROFESSIONAL.
Did I ever say we wanted another nurse? NEVER. The only things we said is that we thought Gary would have much better care on the 6th floor given this huge surgery he has just undergone. It is like being a car salesman. If you have Ferraris and Mini Vans on the same lot and you ONLY sell Ferraris you might be in big trouble if the boss asks you to go sell Mini Vans! I bet the training would be completely different. It is the same in this case.
Besides, Gary is TOTALLY drugged out of his mind and is incapable of answering that question much less being asked the stupid question in the first place!
Who’s the idiot who told his nurse that we didn’t want her and then sent her into our room to confront us and ask us? I was mortified and so incredibly angry. Like I said the nurse is lovely and nice and fun and I never said anything ill about her. The chain of command here should be embarrassed by their behavior.
SOCIAL WORKER
So, in light of the above story I went ahead and contacted the Social Worker that is assigned to us through the hospital. I wanted her to know how awful I thought it was that information was so grossly miscommunicated and that they handled it so poorly.
I hate having to manage Gary’s care – especially in the hospital. We are still waiting on a bigger room for Gary and I bet now that we have kinda created a little bit of a scuttlebutt we probably will be damned to this tiny room for the length of our stay.
Jax is here with me spending the night on the cot. Picture the cot – about 6 feet long and about 30 inches wide. We are both somehow going to fit on this cot and sleep? We will see.
GARY IN GENERAL
Gary has made leaps and bounds over the past few days. His infection is getting better and his wound is looking great. His body parts are beginning to work and heal. The only thing we are still working on is controlling the pain and dealing with his intense anxiety. We will meet with docs tomorrow to talk about his liver surgery (to stint the bile duct) and with the psychiatrist to try to help him head of any extra anxiety he has so that he can concentrate on getting better and healing.
DEEP THOUGHTS
Gary has been through an incredible ordeal over the past 18 months. He has had MAJOR surgeries and countless chemo treatments and radiation that has caused irreversible damage to his body and the list goes on and on.
Still, while praying, he manages to thank God for all of you and he also thanks God for allowing him to have cancer so that he can hopefully touch lives through it.
That being said, enough is enough.!! We keep praying with faith and repetition for healing and complete earthly restoration to Gary’s mind and body. God is good.
Gary has been talking about how much he misses working. He loved his job and he looked forward to going to work every day. I am looking forward to the day when he can go back to work and work for someone who really appreciates him. It still irks me that his old boss never calls him or comes to see him. Gary worked for him for 2 years and I was under the impression that he liked Gary. Gary is pissed that I am talking about this so I will drop it.
CONCLUSION
Anything else? Who reads this thing anyhow? If I am restless and can’t sleep then I will write again.
Off to a sound slumber. Yeah, right! Move over Jax and Gary better behave tonight!
Love,
L
THURSDAY
Many are asking for an update and I will quickly give you one. I can write more tonight when I am at the hospital.
I have been at the hospital overnight every night. I am running on empty but hanging in there.
Gary is still in pain but doing better. His abdomen is still open and he is still fighting a minor infection. He is very weak and he weighed in at 149 today which is 20 LBS underweight but not as bad as I thought.
So much has happened in the past couple of days that it will take me about 1/2 hour to blog so let me do that tonight.
I am off to the hospital. Sorry I have not answered my cell or texts or e-mails. I am completely overwhelmed today and needed a day to just regroup. My Dad leaves tomorrow and I am very sad about that.
I look forward to giving you all an update tonight! Stay tuned!
Love,
Me
I have been at the hospital overnight every night. I am running on empty but hanging in there.
Gary is still in pain but doing better. His abdomen is still open and he is still fighting a minor infection. He is very weak and he weighed in at 149 today which is 20 LBS underweight but not as bad as I thought.
So much has happened in the past couple of days that it will take me about 1/2 hour to blog so let me do that tonight.
I am off to the hospital. Sorry I have not answered my cell or texts or e-mails. I am completely overwhelmed today and needed a day to just regroup. My Dad leaves tomorrow and I am very sad about that.
I look forward to giving you all an update tonight! Stay tuned!
Love,
Me
Tuesday, August 19, 2008
Carey among many others has asked how the boys are holding up.
I think the boys are doing super great! They have been entertained by the 3 man circus that has flown in from out of state - my father! They have been to the beach or swimming or on an adventure every day. They seem to be just fine with everything that is going on with Gary. They have all been to the hospital to see Gary and they go in to his room like it is second nature. I guess that is both good and bad.
Gary is on new medication. We stopped the dilaudid and switched to fentanyl. He has the "drug glaze" but his BP is way down and his HR is running around 65. He seems to be in much less pain. So, I guess being in a drug haze is better right now than struggling with severe pain.
I am showering and heading back up to the hospital with Jax. The boys are at Salt Creek - how shocking!
I managed t o sleep about 7 hours at the hosptial last night so I do feel a little better. Gary slept for a good 7 hours as well which is a first.
They are moving Gary to a room today. I am not sure where. Please hold off on coming to see him until a few more days have passed. I know you are anxious but be patient.
Off and running!
Have a great afternoon.
Love,
Lisa
I think the boys are doing super great! They have been entertained by the 3 man circus that has flown in from out of state - my father! They have been to the beach or swimming or on an adventure every day. They seem to be just fine with everything that is going on with Gary. They have all been to the hospital to see Gary and they go in to his room like it is second nature. I guess that is both good and bad.
Gary is on new medication. We stopped the dilaudid and switched to fentanyl. He has the "drug glaze" but his BP is way down and his HR is running around 65. He seems to be in much less pain. So, I guess being in a drug haze is better right now than struggling with severe pain.
I am showering and heading back up to the hospital with Jax. The boys are at Salt Creek - how shocking!
I managed t o sleep about 7 hours at the hosptial last night so I do feel a little better. Gary slept for a good 7 hours as well which is a first.
They are moving Gary to a room today. I am not sure where. Please hold off on coming to see him until a few more days have passed. I know you are anxious but be patient.
Off and running!
Have a great afternoon.
Love,
Lisa
Monday, August 18, 2008
Beyond Exhausted
I have finally reached the beyond exhaustion marker. I am sooooooooo tired. I came home today around 5 PM and I slept for about 1 1/2 hours before waking up to eat and now get ready to go back to the hospital to spend the night with Gary.
I am praying that I can get some sleep tonight because I can feel myself getting run down.
When I left this afternoon Gary's pain was being managed and holding on a pain scale at about a 7. This is far better than what he has been running.
I am sorry for not returning calls and texts. My intense desire to just sleep has overtaken me.
I am going to get a ride to the hospital tonight so that I do not take a chance falling asleep on the road.
The boys are having fun with my Dad and Gary's Mom & Dad have been making sure Gary is not alone in the ICU.
Off to lay down before heading out.
I will update when I get home tomorrow!
Love, Me
I am praying that I can get some sleep tonight because I can feel myself getting run down.
When I left this afternoon Gary's pain was being managed and holding on a pain scale at about a 7. This is far better than what he has been running.
I am sorry for not returning calls and texts. My intense desire to just sleep has overtaken me.
I am going to get a ride to the hospital tonight so that I do not take a chance falling asleep on the road.
The boys are having fun with my Dad and Gary's Mom & Dad have been making sure Gary is not alone in the ICU.
Off to lay down before heading out.
I will update when I get home tomorrow!
Love, Me
ICU
I do not have much time.
Gary is in ICU and he is awake but in so much pain it would be difficult for me to measure it and be able to convey it to you.
I spent the night in the ICU with him last night and just got home and am going back right now to help the staff with his dressing change. We were up all night.
His abdomen is open and the incision is about 12 inches long. He has drains everywhere and has had extremely high blood pressure and heart rate because of the pain.
They have increased his meds and believe me when I tell you that if you saw his abdominal incision you too would understand why he is in so much pain!
I will update when I return this afternoon.
Love, Me
Gary is in ICU and he is awake but in so much pain it would be difficult for me to measure it and be able to convey it to you.
I spent the night in the ICU with him last night and just got home and am going back right now to help the staff with his dressing change. We were up all night.
His abdomen is open and the incision is about 12 inches long. He has drains everywhere and has had extremely high blood pressure and heart rate because of the pain.
They have increased his meds and believe me when I tell you that if you saw his abdominal incision you too would understand why he is in so much pain!
I will update when I return this afternoon.
Love, Me
Saturday, August 16, 2008
ICU UPDATE
Gary's parents just arrived and they will be spending the day with Gary tomorrow.
Zach and I saw Gary tonight in the ICU. He is doing well – all things considered. His vitals are stable and he is in a medically induced drug coma. He is resting so comfortably and it is a relief to finally see some peace on his face. He will not be awake until Monday morning.
We got to rub his head and tell him how much we loved him. We also told him the good news about how well he did and how he finally would wake up to hear good news for once!
I am going to go back after church/lunch tomorrow. Unfortunately, he can’t have visitors until he is our of the UCI. Depending on how his healing is going everyone will probably have to wait to see him for another week or so. He will be in ICU until at least Thursday – as of now.
I have to get some rest but wanted you to know how well he was doing and how thankful we are for all of your prayers!
Peace and Love,
Lisa
Zach and I saw Gary tonight in the ICU. He is doing well – all things considered. His vitals are stable and he is in a medically induced drug coma. He is resting so comfortably and it is a relief to finally see some peace on his face. He will not be awake until Monday morning.
We got to rub his head and tell him how much we loved him. We also told him the good news about how well he did and how he finally would wake up to hear good news for once!
I am going to go back after church/lunch tomorrow. Unfortunately, he can’t have visitors until he is our of the UCI. Depending on how his healing is going everyone will probably have to wait to see him for another week or so. He will be in ICU until at least Thursday – as of now.
I have to get some rest but wanted you to know how well he was doing and how thankful we are for all of your prayers!
Peace and Love,
Lisa
Out Of Surgery
Hi everyone. Praise God that Gary is out of surgery and in recovery.
He will stay in the ICU until Monday and he will be heavily sedated.
This is exactly what has happened during the surgery:
1. The hole was not in the large intestine (colon) but it was in the small intestine right above the bowel obstruction. They cut out the damaged bowel/hole and fixed it.
2. The neobladder had a hole in it. They were able to fix that as well.
3. The appendix was swollen and looked like it would be the next thing to cause issues so they removed it.
4. They took a look at his liver and they are anxious to move forward with the gastroenterologist to get the billiary drain out and the stint in so that he can function without a drain. Then we can chemoembolize his liver and move forward with that as well.
So, we are very pleased that the docs are so pleased. The surgeons came in with smiles and that was a great sign!
Hopefully Gary will be on the road to recovery and his pain will be dimished significantly.
In the meantime, he has from what I understand about 12 tubes coming out of his abdomen. They did not close him up and he will remain open until he closes up naturally - about 6 weeks from what I understand.
I have not seen him yet because they will not allow me to go into recovery. It won't make much difference anyhow because they are keeping him knocked out until Monday!
Thank you for all of your prayers. This seems like a positive step in the right direction. He needs healing now so that we can move forward with treatment. Please continue to pray for healing and remember to thank God for this victory today! Gary will be so happy to wake up with news that is not worse than when he went in.
We owe our lives to Him!
Love,
L
He will stay in the ICU until Monday and he will be heavily sedated.
This is exactly what has happened during the surgery:
1. The hole was not in the large intestine (colon) but it was in the small intestine right above the bowel obstruction. They cut out the damaged bowel/hole and fixed it.
2. The neobladder had a hole in it. They were able to fix that as well.
3. The appendix was swollen and looked like it would be the next thing to cause issues so they removed it.
4. They took a look at his liver and they are anxious to move forward with the gastroenterologist to get the billiary drain out and the stint in so that he can function without a drain. Then we can chemoembolize his liver and move forward with that as well.
So, we are very pleased that the docs are so pleased. The surgeons came in with smiles and that was a great sign!
Hopefully Gary will be on the road to recovery and his pain will be dimished significantly.
In the meantime, he has from what I understand about 12 tubes coming out of his abdomen. They did not close him up and he will remain open until he closes up naturally - about 6 weeks from what I understand.
I have not seen him yet because they will not allow me to go into recovery. It won't make much difference anyhow because they are keeping him knocked out until Monday!
Thank you for all of your prayers. This seems like a positive step in the right direction. He needs healing now so that we can move forward with treatment. Please continue to pray for healing and remember to thank God for this victory today! Gary will be so happy to wake up with news that is not worse than when he went in.
We owe our lives to Him!
Love,
L
SURGERY DAY
Hi everyone.
The doctors just took Gary into surgery and not a minute too soon. He has been up all night in severe pain. The anesthesiologist was over 1/2 late - that should reflect in our billing statement, right?
Gary chose to have his mandatory "manscaping" done while under anesthesia instead of doing the "shearing" while he was still awake. I thought that was a great idea.
More than likely he will be in the ICU on a ventilator for the night so they can keep him heavily sedated and he can get some much needed rest.
My Dad and I are going to go to Starbucks for some "real" coffee and then we will keep ourselves busy until they call me.
Pray for a great outcome and for Dr. Le and Dr. Phan as well as the anesthesiologist. Hopefully the guy just slept in because he was tired and not because he was nursing a hangover from a wild night!
I will give you an update as soon as I hear something.
Love to all,
L
The doctors just took Gary into surgery and not a minute too soon. He has been up all night in severe pain. The anesthesiologist was over 1/2 late - that should reflect in our billing statement, right?
Gary chose to have his mandatory "manscaping" done while under anesthesia instead of doing the "shearing" while he was still awake. I thought that was a great idea.
More than likely he will be in the ICU on a ventilator for the night so they can keep him heavily sedated and he can get some much needed rest.
My Dad and I are going to go to Starbucks for some "real" coffee and then we will keep ourselves busy until they call me.
Pray for a great outcome and for Dr. Le and Dr. Phan as well as the anesthesiologist. Hopefully the guy just slept in because he was tired and not because he was nursing a hangover from a wild night!
I will give you an update as soon as I hear something.
Love to all,
L
Friday, August 15, 2008
Patience
Thank you all for your patience.
We met with Dr. Le and earlier with Dr. Carroll (Dr. Barth's partner).
Dr. Carroll was pleased with the surgical plan we have for Gary. This plan will possibly allow him to have chemo in 3 weeks time which is what we wanted to hear.
Dr. Le is still concerned with Gary's infection and instead of waiting all night for an OR to open up Gary has a scheduled spot in the OR at 7:30 AM tomorrow morning. Dr. Le would like Gary to get some sleep and we are upping his pain medication so that we can accomplish that.
It is a bummer that we have to wait but for everything there is always a reason.
I will stay the night with Gary and we will go to pre-op at 6:15 am.
Thank you again for your prayers and patience. I promise to post as soon as he is in surgery.
Good Night and remember to say your prayers!
Love,
L
We met with Dr. Le and earlier with Dr. Carroll (Dr. Barth's partner).
Dr. Carroll was pleased with the surgical plan we have for Gary. This plan will possibly allow him to have chemo in 3 weeks time which is what we wanted to hear.
Dr. Le is still concerned with Gary's infection and instead of waiting all night for an OR to open up Gary has a scheduled spot in the OR at 7:30 AM tomorrow morning. Dr. Le would like Gary to get some sleep and we are upping his pain medication so that we can accomplish that.
It is a bummer that we have to wait but for everything there is always a reason.
I will stay the night with Gary and we will go to pre-op at 6:15 am.
Thank you again for your prayers and patience. I promise to post as soon as he is in surgery.
Good Night and remember to say your prayers!
Love,
L
SURGERY DAY
Hi everyone. I am home for a while and wanted to update everyone.
Thank you to every single person who took the time to come to Hoag to give blood for Gary. We are so appreciative!!!
There are so many people who just want to help us in some way and we are so incredibly thankful.
Anytime in your life when you have had it with the human race in general and you think that there are very few great and excellent people left in this world who aren't idiots and who don't care I want you to come to this site and read about all the wonderful things people have stepped up to the plate to do for our family. It is simply overwhelming to know how many people have stuck by us throughout this ordeal. How blessed we are!
So, Gary is in loads and loads of abdominal pain. He has a raging infection in his abdominal cavity and therefore the surgeons can't wait any longer to operate.
Tonight, at an unknown time as of now, they will operate and will do the following:
1. Fix the hole in the neobladder.
2. Fix the hole in the colon (large intestine)
3. Fix whatever is going on with the small bowel (small intestine) blockage.
This will be a 4-6 hour surgery. Please pray that everything goes well with what the surgeons are trying to accomplish. Dr. Le and Dr. Phan are wonderful doctors and we trust them.
The whole purpose in doing this surgery is so that Gary can get back to fighting the cancer with the chemo treatments.
The next phase will be to operate on his liver.
I am getting the kids situated so that my Dad and I can stay the night with Gary. Praise God for all of our friends!
I hope to get much needed sleep while Gary is in surgery tonight.
I will keep updating the blog as I get info during surgery. Hoag has Hi-Fi downstairs and I can run down every so often to update.
Please keep your prayers coming. While you are at it read Matthew 17: 11-the end. There is a story about a man who brings his son to the disciples who end up not being able to heal the son. The dad then goes to Jesus and tells Him that the disciples could not heal his son. Jesus then begins to speak about faith. It is not the quantity of faith we possess but the quality of faith we have. HAVE FAITH. REALLY HAVE IT. OWN IT and pray for God to give it to you!!!
All our Love,
L&G
Thank you to every single person who took the time to come to Hoag to give blood for Gary. We are so appreciative!!!
There are so many people who just want to help us in some way and we are so incredibly thankful.
Anytime in your life when you have had it with the human race in general and you think that there are very few great and excellent people left in this world who aren't idiots and who don't care I want you to come to this site and read about all the wonderful things people have stepped up to the plate to do for our family. It is simply overwhelming to know how many people have stuck by us throughout this ordeal. How blessed we are!
So, Gary is in loads and loads of abdominal pain. He has a raging infection in his abdominal cavity and therefore the surgeons can't wait any longer to operate.
Tonight, at an unknown time as of now, they will operate and will do the following:
1. Fix the hole in the neobladder.
2. Fix the hole in the colon (large intestine)
3. Fix whatever is going on with the small bowel (small intestine) blockage.
This will be a 4-6 hour surgery. Please pray that everything goes well with what the surgeons are trying to accomplish. Dr. Le and Dr. Phan are wonderful doctors and we trust them.
The whole purpose in doing this surgery is so that Gary can get back to fighting the cancer with the chemo treatments.
The next phase will be to operate on his liver.
I am getting the kids situated so that my Dad and I can stay the night with Gary. Praise God for all of our friends!
I hope to get much needed sleep while Gary is in surgery tonight.
I will keep updating the blog as I get info during surgery. Hoag has Hi-Fi downstairs and I can run down every so often to update.
Please keep your prayers coming. While you are at it read Matthew 17: 11-the end. There is a story about a man who brings his son to the disciples who end up not being able to heal the son. The dad then goes to Jesus and tells Him that the disciples could not heal his son. Jesus then begins to speak about faith. It is not the quantity of faith we possess but the quality of faith we have. HAVE FAITH. REALLY HAVE IT. OWN IT and pray for God to give it to you!!!
All our Love,
L&G
Wednesday, August 13, 2008
What a difference a day makes
Hi. I am finally home. I am going on 40 some hours with almost no sleep and somehow the roads weren't too blurred as I drove home tonight!!
This is going to be quick because I am about to fall asleep.
Gary is doing a million times better tonight. He is coherent and talkative and his voice is very strong once again. He has much less discomfort and he is ready to move forward.
This morning when the surgery finally took place we found out about another set back. While Dr. Phan and Dr. Le had Gary opened up they found that his colon has a large hole blown through it and it was leaking into his abdomen along with his bladder hole that is also leaking into his abdomen.
So, because the infection is so bad they drained his abdomen and instead of closing the wound they left it wide open so that they could continue to drain the area and get rid of the infection.
They can not go any further until the infection clears completely.
He will more than likely stay opened up through the weekend and surgery will happen on Monday. The plan is to repair the bladder, colon (large intestine) and the bowel obstruction. Hopefully he will not need a bag for his bladder or his colon.
He has enjoyed everyone visiting. I am hoping tomorrow he feels even better! Wouldn't that be great????
I left him resting very comfortably and he had a smile on his face. We had lots of fun conversation tonight and I feel so happy for him that he feels so much better! Praise God!!
I am off to bed. If anyone can donate blood tomorrow please read the blog before this one to get the number to Hoag so that you can tell them that you are coming. We need O - positive or negative!
All our love and KEEP THOSE PRAYERS COMING!!!
L
This is going to be quick because I am about to fall asleep.
Gary is doing a million times better tonight. He is coherent and talkative and his voice is very strong once again. He has much less discomfort and he is ready to move forward.
This morning when the surgery finally took place we found out about another set back. While Dr. Phan and Dr. Le had Gary opened up they found that his colon has a large hole blown through it and it was leaking into his abdomen along with his bladder hole that is also leaking into his abdomen.
So, because the infection is so bad they drained his abdomen and instead of closing the wound they left it wide open so that they could continue to drain the area and get rid of the infection.
They can not go any further until the infection clears completely.
He will more than likely stay opened up through the weekend and surgery will happen on Monday. The plan is to repair the bladder, colon (large intestine) and the bowel obstruction. Hopefully he will not need a bag for his bladder or his colon.
He has enjoyed everyone visiting. I am hoping tomorrow he feels even better! Wouldn't that be great????
I left him resting very comfortably and he had a smile on his face. We had lots of fun conversation tonight and I feel so happy for him that he feels so much better! Praise God!!
I am off to bed. If anyone can donate blood tomorrow please read the blog before this one to get the number to Hoag so that you can tell them that you are coming. We need O - positive or negative!
All our love and KEEP THOSE PRAYERS COMING!!!
L
O+/O- Blood Donations Needed on Thursday
This is Michele Merk blogging on behalf of Lisa....
Update a/o 3:00 p.m. Wednesday 8/13
Gary is resting comfortably and Lisa will update everyone on the details of the surgery this morning after she gets some much needed rest. Gary is stable and even managed several smiles today. The boys are on their way to visit with their Dad now.
BLOOD NEEDED: Hoag Hospital is in need of O+ and/or O- blood for Gary - this blood needs to be drawn tomorrow (Thursday) for Gary to be put aside for any future surgeries (Hoag is out of this type!).
If you can donate, please call (949)764-5621 to schedule an appointment for tomorrow and make sure that when you donate you specify it is to be reserved for Gary Sallee.
Thank you in advance!
Michele
Update a/o 3:00 p.m. Wednesday 8/13
Gary is resting comfortably and Lisa will update everyone on the details of the surgery this morning after she gets some much needed rest. Gary is stable and even managed several smiles today. The boys are on their way to visit with their Dad now.
BLOOD NEEDED: Hoag Hospital is in need of O+ and/or O- blood for Gary - this blood needs to be drawn tomorrow (Thursday) for Gary to be put aside for any future surgeries (Hoag is out of this type!).
If you can donate, please call (949)764-5621 to schedule an appointment for tomorrow and make sure that when you donate you specify it is to be reserved for Gary Sallee.
Thank you in advance!
Michele
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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