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I forgot to tell all of you this story.
The other day when I brought all 3 boys to see Gary Jax wanted me to make him a "glove balloon". So, I took a blue glove (the latex gloves are on the wall) and I blew it up and tied it off so that he could bat it around a little.
About 10 minutes later I look over and Jax has every finger on the glove bent down with the exception of the lovely middle one. Here is how the dialog goes:
Me: Jax, What are you doing?
Jax: I am sticking up the middle finger. ( BTW - Very matter of factly stated as both other brothers burst into laughter).
Me: That is totally innapropriate Jax. You know better than that. DO NOT DO THAT AGAIN. (The stern mean mommy voice).
A few moments pass.................
To my surprise I glance over his way again and he still has the middle finger on the glove balloon pointing BUT this time he has the finger facing the ground.
Me: Jax, I thought I told you that was COMPLETELY INNAPROPRIATE! What part of DO NOT DO THAT AGAIN are you having a hard time understanding?
Jax: (his eyes roll back as most of you have seen) Mom, I am just giving the devil the middle finger! Big sigh like I am bugging him.
Where the heck did that come from? If anyone deserves the middle finger it is the devil. I guess Jax knows what giving the middle finger means!
Wednesday, July 30, 2008
16 DAYS
And on the 16th day GARY COMES HOME!!!! Gary and I will be coming home from USC around 5:30 tonight! We are weaning him off of the TPN (nutrition) and will check his blood sugar at 5:00. If all goes as planned (and it better) we will be outta here and I will get to drive home in the carpool lane! Woohoo!!
We are both more than ready for him to come home! We are going to SURPRISE the kids!!
I have a favor to ask of all of you. Please do not call tonight. I am afraid that we will be bombarded with phone calls and Gary will get overwhelmed by the sound of the ringing phone! I love that everyone will want to check in but I ask that you give us until tomorrow to do so.
What a HUGE relief! YEAH!!!!!
I will blog tonight to let you all know how everything goes!
Love and HUGE SMILES!!
Lisa
We are both more than ready for him to come home! We are going to SURPRISE the kids!!
I have a favor to ask of all of you. Please do not call tonight. I am afraid that we will be bombarded with phone calls and Gary will get overwhelmed by the sound of the ringing phone! I love that everyone will want to check in but I ask that you give us until tomorrow to do so.
What a HUGE relief! YEAH!!!!!
I will blog tonight to let you all know how everything goes!
Love and HUGE SMILES!!
Lisa
Tuesday, July 29, 2008
NO SURGERY
Good news. After taking an xray the docs have determined that they do not need to re-position the liver drain. Thank God!!
Gary is back in his room!! YEAH!!!!!
Gary is back in his room!! YEAH!!!!!
Earthquake
It's official.
It is the FIRST TIME EVER our boys have fexperienced a sizable earthquake where the house actually shook!
We are on the 6th floor at SC and the whole building swayed back and forth. I will say it is the first time I have been in a large building when a quake happened. I
t was kinda cool. Thank God is was small!
It is the FIRST TIME EVER our boys have fexperienced a sizable earthquake where the house actually shook!
We are on the 6th floor at SC and the whole building swayed back and forth. I will say it is the first time I have been in a large building when a quake happened. I
t was kinda cool. Thank God is was small!
Update
Hi. Nothing much new. We met with Dr. Ault - Colorectal guy - and he seems to think that as of now Gary's bowels are anatomically fine with some functionality issues that can be addressed with cocktails of laxatives and immodium (too little and too much). We appreciate Dr. Ault's communication skills. If the problem persists then Dr. Ault can place a stint in his left bowel to open the narrowing (the part of the bowel that seems to be irritated from either chemo or radiation or avastin). That is a simple procedure but he does not want to go that route at this point in time.
Gary started having the waves of pain in his abdomen this morning after he ate. We are hoping and praying it is as simple as his system getting used to food once again. He ate 1/2 pancake and a scrambled egg this morning and drank a Boost.
The docs are coming in to talk to Gary about a permanent pain pump. We will see the pros and cons of that.
The liver team came in and discovered that Gary needs to be taken to have another procedure right away. Something has happened to the drain because Gary is draining blood into his bag and he should only have bile. Before he hemmorages they need to take him in and fix it. I am going to scream and yell to make sure he is medicated this time.
When we asked about why he was in so much pain during the procedure somehow the conversation changed and no one seemed to have the answer to that question. IT WILL NOT HAPPEN AGAIN.
So, instead of coming home I am staying to make sure things happen for Gary. He is extremely agitated today and seems anxious. I wish I could help him but I know just being here is all I can do.
Stay tuned and keep praying.
Love, L
Gary started having the waves of pain in his abdomen this morning after he ate. We are hoping and praying it is as simple as his system getting used to food once again. He ate 1/2 pancake and a scrambled egg this morning and drank a Boost.
The docs are coming in to talk to Gary about a permanent pain pump. We will see the pros and cons of that.
The liver team came in and discovered that Gary needs to be taken to have another procedure right away. Something has happened to the drain because Gary is draining blood into his bag and he should only have bile. Before he hemmorages they need to take him in and fix it. I am going to scream and yell to make sure he is medicated this time.
When we asked about why he was in so much pain during the procedure somehow the conversation changed and no one seemed to have the answer to that question. IT WILL NOT HAPPEN AGAIN.
So, instead of coming home I am staying to make sure things happen for Gary. He is extremely agitated today and seems anxious. I wish I could help him but I know just being here is all I can do.
Stay tuned and keep praying.
Love, L
Monday, July 28, 2008
Upsetting Day
Good Evening or I guess it is almost morning.
I had planned to take the boys to the beach tomorrow but plans have changed.
Jake is spending the night tonight so that I can leave for the hospital before sunlight. I hate traffic and will hopefully avoid most of it by leaving so stinking early.
The past few days have been long and daunting. Waiting for answers and plans is very difficult. We had not spoken to Dr. Barth in days. One day Gary is rushed up to USC for immediate surgery and then days later we are sitting with no real plan and waiting for something or anything to happen. Not talking to Dr. Barth makes this situation very difficult. I know how challenging it is to be a physician BUT try being the person laying in the bed with cancer. We have limited knowledge and frankly what we are going through is very scary at times.
I got to the hospital at 11:00 and at 12:30 Gary was taken into surgery to insert the tube into his liver to drain the blocked bile duct. I asked how long Gary would be and I was told he would be back in 2 to 2 1/2 hours. So, the kids and I wait.
Realize that Gary has had something similar done with his kidneys and it was fairly uncomplicated and he was back in his room within a 2 hour time period. I felt that this was going to be a tolerable procedure.
So, I wait. 2 1/2 hours.......3 hours.........3 1/2 hours.........4 hours. Finally, I go to the nurses station to ask where he is. I am told that he is in recovery. Recovery? No one explained this to me or to Gary. What the hell? I have been friggin waiting all this time with ABSOLUTELY NO COMMUNICATION. I HATE NO COMMUNICATION MORE THAN ANYTHING WHEN IT COMES TO GARY'S CARE! There are interns and residents and fellows and doctors and God only know who else is in the room that could have taken 5 minutes to come to me to tell me what the hell was going on. Guess not.
I take the boys downstairs to recovery and I go in to see him. He is somewhat out of it and I ask the nurse how things went.
"Well, Mr. Sallee did not do so well during the procedure. The pain medication did not work and he screamed a good part of the time." PREGNANT PAUSE ON MY PART WITH A SICK FEELING OF TERROR IN MY HEAD! Are you all hearing what I am telling you?????
Gary had a TUBE put into his liver through his side and he was not medicated enough and felt the whole thing and screamed as they PROCEEDED to do the procedure. I am sick retelling this to you. Many of you know I am fairly level headed and rarely cry. I spent the entire time on our way home from the hospital crying and thinking about what it must have been like for him during that time.
My gosh. That is the last thing Gary deserves. Hasn't the guy been through enough????? What the hell were the people in that room thinking??? Wasn't there an anesthesiologist in the room? Is there a good answer?
I have no answers because no doctor bothered to talk to us after the procedure to tell us how things went. I AM HIS WIFE FOR THE LOVE OF GOD! I deserve to be treated with due respect and I should have been told how things went. That is just common courtesy.
I am really trying hard to have faith in the people caring for him. I know they are talented doctors. I know Dr. Barth wants us to have faith in them as well.
I do not know how I am going to handle this tomorrow. I do know that I am very upset and need to know why Gary had to suffer on that table. I also want to know why no one came out to let me know how things went. There must be a great reason and I am looking forward to finding out what it is.
I know I set the tone and I ALWAYS try my hardest to cooperate and go with the flow and do as I am told. I do not like to rock the boat but this time I think a little rocking is necessary.
Anyhow, Gary is wiped and will hopefully get some rest tonight.
I will update after speaking with docs tomorrow.
Off to bed.
Love,
L
I had planned to take the boys to the beach tomorrow but plans have changed.
Jake is spending the night tonight so that I can leave for the hospital before sunlight. I hate traffic and will hopefully avoid most of it by leaving so stinking early.
The past few days have been long and daunting. Waiting for answers and plans is very difficult. We had not spoken to Dr. Barth in days. One day Gary is rushed up to USC for immediate surgery and then days later we are sitting with no real plan and waiting for something or anything to happen. Not talking to Dr. Barth makes this situation very difficult. I know how challenging it is to be a physician BUT try being the person laying in the bed with cancer. We have limited knowledge and frankly what we are going through is very scary at times.
I got to the hospital at 11:00 and at 12:30 Gary was taken into surgery to insert the tube into his liver to drain the blocked bile duct. I asked how long Gary would be and I was told he would be back in 2 to 2 1/2 hours. So, the kids and I wait.
Realize that Gary has had something similar done with his kidneys and it was fairly uncomplicated and he was back in his room within a 2 hour time period. I felt that this was going to be a tolerable procedure.
So, I wait. 2 1/2 hours.......3 hours.........3 1/2 hours.........4 hours. Finally, I go to the nurses station to ask where he is. I am told that he is in recovery. Recovery? No one explained this to me or to Gary. What the hell? I have been friggin waiting all this time with ABSOLUTELY NO COMMUNICATION. I HATE NO COMMUNICATION MORE THAN ANYTHING WHEN IT COMES TO GARY'S CARE! There are interns and residents and fellows and doctors and God only know who else is in the room that could have taken 5 minutes to come to me to tell me what the hell was going on. Guess not.
I take the boys downstairs to recovery and I go in to see him. He is somewhat out of it and I ask the nurse how things went.
"Well, Mr. Sallee did not do so well during the procedure. The pain medication did not work and he screamed a good part of the time." PREGNANT PAUSE ON MY PART WITH A SICK FEELING OF TERROR IN MY HEAD! Are you all hearing what I am telling you?????
Gary had a TUBE put into his liver through his side and he was not medicated enough and felt the whole thing and screamed as they PROCEEDED to do the procedure. I am sick retelling this to you. Many of you know I am fairly level headed and rarely cry. I spent the entire time on our way home from the hospital crying and thinking about what it must have been like for him during that time.
My gosh. That is the last thing Gary deserves. Hasn't the guy been through enough????? What the hell were the people in that room thinking??? Wasn't there an anesthesiologist in the room? Is there a good answer?
I have no answers because no doctor bothered to talk to us after the procedure to tell us how things went. I AM HIS WIFE FOR THE LOVE OF GOD! I deserve to be treated with due respect and I should have been told how things went. That is just common courtesy.
I am really trying hard to have faith in the people caring for him. I know they are talented doctors. I know Dr. Barth wants us to have faith in them as well.
I do not know how I am going to handle this tomorrow. I do know that I am very upset and need to know why Gary had to suffer on that table. I also want to know why no one came out to let me know how things went. There must be a great reason and I am looking forward to finding out what it is.
I know I set the tone and I ALWAYS try my hardest to cooperate and go with the flow and do as I am told. I do not like to rock the boat but this time I think a little rocking is necessary.
Anyhow, Gary is wiped and will hopefully get some rest tonight.
I will update after speaking with docs tomorrow.
Off to bed.
Love,
L
Friday, July 25, 2008
Decoding Confusion
Hi everyone.
I need you all to pray. Please pray for Christine. Christine is the sister of my very close friend and she is 39 and has a husband and 2 small children. Christine was just diagnosed with what appears to be Stage IV Ovarian Cancer. The story is too familiar and Christine has been being treated for issues concerning her bladder for quite some time. I am guessing that this was overlooked (obviously). I can tell you speaking from experience that this is probably one of the most sickening things you never want to hear. I am asking you to pray for her and for her family. They NEED your prayers right now as they figure out the mass confusion of what doc to go to and what treatment to have and how to tell the kids and everything else horrible that goes along with this kind of news.
You have all prayed for our family faithfully and we have felt those prayers and I ask that you say of prayer for this family as well.
On to other cancer news.
Well, we just got done meeting with Dr. Selby and his team as well as with Dr. Ault via speaker phone.
Here is the new and very different plan of attack.
They are not going to be doing ANY surgery at this point but Gary has to remain hospitalized. Our BIG focus is getting Gary back to his chemo and Avastin regimen as quickly as possible and until they take care of and resolve the following problems we can not move forward with treatment.
Let's start with the liver.
Gary has some blocked bile ducts in the left lobe of the liver where the lesion is. Dr. Selby will "perk" him (put a drain into his duct) to alleviate this blockage and take the risk for infection down. They will do this Monday.
They will leave the drain in and then Gary will have a catheter inserted through his leg and up into his liver and the chemotherapy will be administered directly to his liver.
As soon as the disease shrinks more then they can possibly do surgery to remove it. Dr. Selby is afraid to remove the small liver lesion because it could spread the disease further and God already knows we do not need that!
Now on to the really complicated portion of our situation...Gary's bowels.
Gary had an enema scan today and guess what? No obstruction. No narrowing. No nothing abnormal is showing up. The doctors are stumped. Gary is in severe pain still with no medical explanation. There is a portion of the lower small intestines that looks "ratty" like an old used rope but things seem to be flowing fine. Is it possible that it is damaged beyond repair? Yes say the docs but very unlikely. I keep reminding every new medical team that everything with Gary is "very unlikely".
The plan is this......Gary will drink Magnesium Citrate which will inevitably induce #2 (painful and lots of it!). TMI, huh?
If he successfully "goes" then they will start him on solid foods and we will see what happens.
If by Thursday or Friday he has not had #2 on his own then they will do surgery and explore the colon to determine what is causing the loss of functionality. It really is not functioning but anatomically there is nothing wrong with it.
Until it is figured out we can't have systemic therapy (chemo or Avastin).
They will give another shot with trying to control Gary's pain by giving his an epidural tomorrow morning. It did not work last time when he was at Hoag in February but you never know this time around!
I hope I explained everything correctly.
One very important closing thought.
I am here to tell you that prayer changes things people. I want you to really believe what you are praying about instead of just saying it. We had the opportunity to meet with a faithful man who prayed over Gary right before he was transferred here. One day I will share the whole story with you but I will say that maybe God's timing is coming and we will see a complete healing in Gary.
The unobstruction of Gary's bowel could just be just the beginning ....
Please pray for faith and peace and healing for our family as well as for Christine's family.
Love,
Lisa
I need you all to pray. Please pray for Christine. Christine is the sister of my very close friend and she is 39 and has a husband and 2 small children. Christine was just diagnosed with what appears to be Stage IV Ovarian Cancer. The story is too familiar and Christine has been being treated for issues concerning her bladder for quite some time. I am guessing that this was overlooked (obviously). I can tell you speaking from experience that this is probably one of the most sickening things you never want to hear. I am asking you to pray for her and for her family. They NEED your prayers right now as they figure out the mass confusion of what doc to go to and what treatment to have and how to tell the kids and everything else horrible that goes along with this kind of news.
You have all prayed for our family faithfully and we have felt those prayers and I ask that you say of prayer for this family as well.
On to other cancer news.
Well, we just got done meeting with Dr. Selby and his team as well as with Dr. Ault via speaker phone.
Here is the new and very different plan of attack.
They are not going to be doing ANY surgery at this point but Gary has to remain hospitalized. Our BIG focus is getting Gary back to his chemo and Avastin regimen as quickly as possible and until they take care of and resolve the following problems we can not move forward with treatment.
Let's start with the liver.
Gary has some blocked bile ducts in the left lobe of the liver where the lesion is. Dr. Selby will "perk" him (put a drain into his duct) to alleviate this blockage and take the risk for infection down. They will do this Monday.
They will leave the drain in and then Gary will have a catheter inserted through his leg and up into his liver and the chemotherapy will be administered directly to his liver.
As soon as the disease shrinks more then they can possibly do surgery to remove it. Dr. Selby is afraid to remove the small liver lesion because it could spread the disease further and God already knows we do not need that!
Now on to the really complicated portion of our situation...Gary's bowels.
Gary had an enema scan today and guess what? No obstruction. No narrowing. No nothing abnormal is showing up. The doctors are stumped. Gary is in severe pain still with no medical explanation. There is a portion of the lower small intestines that looks "ratty" like an old used rope but things seem to be flowing fine. Is it possible that it is damaged beyond repair? Yes say the docs but very unlikely. I keep reminding every new medical team that everything with Gary is "very unlikely".
The plan is this......Gary will drink Magnesium Citrate which will inevitably induce #2 (painful and lots of it!). TMI, huh?
If he successfully "goes" then they will start him on solid foods and we will see what happens.
If by Thursday or Friday he has not had #2 on his own then they will do surgery and explore the colon to determine what is causing the loss of functionality. It really is not functioning but anatomically there is nothing wrong with it.
Until it is figured out we can't have systemic therapy (chemo or Avastin).
They will give another shot with trying to control Gary's pain by giving his an epidural tomorrow morning. It did not work last time when he was at Hoag in February but you never know this time around!
I hope I explained everything correctly.
One very important closing thought.
I am here to tell you that prayer changes things people. I want you to really believe what you are praying about instead of just saying it. We had the opportunity to meet with a faithful man who prayed over Gary right before he was transferred here. One day I will share the whole story with you but I will say that maybe God's timing is coming and we will see a complete healing in Gary.
The unobstruction of Gary's bowel could just be just the beginning ....
Please pray for faith and peace and healing for our family as well as for Christine's family.
Love,
Lisa
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