First:
Happy Anniversary Jennifer. I love you.
7:15 am: Okay. We arrived at 5:15 this morning. Very little sleep. They just rolled Jennifer back to surgery. 8 hours are scheduled. I pray all goes well. Will update this post throughout the day. Please keep the prayers going.
9:45 am: Met with the head and neck surgeon. He indicated the procedure went well. Preliminary results are that he got it all in the first attempt. Full lab results will confirm in about a week. Now the plastic surgeons are working. Still praying.
12:00 pm: scheduled update via nursing staff. All is going well. Vitals are good. The surgeons are working under the microscope to connect all the small stuff. Next update is to be around 2:00.
1:45 pm: Met with plastic surgeon. He said the reconstruction went well. Right now, everything looks good and it becomes an observation game. The good news (based on speculation) is that her swallowing shouldn't be too affected, and her speech should develop to around 90% of normal....her new normal. I hope that holds true. She is most likely skipping ICU and will go into recovery status instead.
5:00 pm: Just saw Jennifer, albeit for only a few minutes. She's looking good, considering. Hell, shes looking good period. She gave me the best anniversary gift by pulling through. She wrote a few notes, but is still under the influence a little and very tired. She's in pain, but has good drugs at her disposal. They should move her to a room soon. After she gets settled, I'll head home for a couple of hours to see the kids, then head back up to spend the night. Sory Mom, gotta keep watching the little munchkins (thanks).
10:55 pm: Thanks grandma and grandpa for coming up here to wait with me and cover while I went home for a little while. I wasn't the most conversational, but I had a million conversations running through my head. Jim, thanks too. Enjoyed the catch up. Give the girls a kiss. I hope your mother gets better.
Mom, Terry. Thank you for watching the kids (thanks neighbors for picking up the slack).
On to the important stuff. Jennifer is sleeping. I just arrived back to the room and dont have any other updates. However, I think she's getting used to the trach, and doesn't appear to be laboring with it. It's amazing what flies out of that thing.....stories to be told offline...let's just say I saw something fly about 4 feet. What a pair of lungs.
I thank everybody for their thoughts and prayers. We couldn't have done this without you, as it was an emotionally trying experience.
Happy 15th Anniversary to my Love. Let's start #16 strong.
Thanks for all your prayers
O Saint Peregrine, you who have been called "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more: you who were favored with the vision of Jesus coming down from His Cross to heal your affliction, ask of God and Our Lady the cure of these sick persons whom we entrust to you Jennifer. Aided in this way by your powerful intercession, we shall sing praise to God for His great goodness and mercy. Amen.
Thursday, May 31, 2012
Wednesday, May 30, 2012
Countdown C - 1
What a day!
We had the naturally rough start to the morning. Earlier than normal does not sit well with kids, even Ben, our early riser. But, we got them going and out the door in our proposed time.
By the time we hit I45, traffic was up to 50 minutes to downtown (MD Anderson is on the other side of downtown). So we decide to take the HOV lane. No sooner do we get in the HOV than we learn there's a stalled car down the road and an accident involving a Metro bus, both in the HOV...now we have nowhere to go because the HOV is bordered by 3 foot high concrete walls. We wait, and wait. LOOK! The main lanes are moving....and we're sitting here. Then, as is common in Houston, the HOV opens up. There's no sign of a stalled car or bus when we get to the "site". I've never figured out the magic involved there.
Unfortunately, the HOV kicks us out on the north side of downtown. We have to find our way back to I45 so we can continue to MD Anderson. After a couple of turns, snitty remarks, and a few gasps, the English-accented voice on my GPS finally calms down and points us in the right direction. We still have to navigate 45 through downtown, then transfer to 288....stop and go. We finally arrive at MD Anderson at 8:25. The appointment is at 8:30. Geez.
Oh...forgot to call Cat to wake her up in time to catch the bus. We start calling and texting, but learn later that she made it on time...whew.
Met with the surgeon and the physician's assistant. Here's the initial scoop.
He will surgically remove the cancer, which involves removing 1-2 centimeters surrounding the cancer to ensure he gets all of it. They are cognizant of the need to be aggressive yet considerate of the patient's need for functionality, but he said he'll have to go into the floor of the mouth....commence the flap and reconstructive surgery. He was also certain that he will perform a tracheostomy. But it should be removed before she goes home. I'll try to get some sound recordings before they remove the tube. Feeding tube will stay in at least a week to ensure the flap seals properly.
We expect 5-7 days in the hospital. During which time all the tubing will eventually be removed (assuming proper healing). I guess I will not be able to collect the biohazard goo at home. :(
Our participation in the lymphoseek trial was cancelled because insurance would not approve of it even though there was no cost to us or the insurance company as we understood. Go figure. Cutting costs when there are none to cut. There's probably a reason not made known to us, but it is disappointing that I will not have a nice night light tonight.
So we continued to the next, an imaging study. Step aside Glamour Shots... This guy rocks. Lots of photos and a survey.
Side note: the cafeteria on the first floor made a mean barbecue plate and a Philly cheese steak for us...we're stuffed.
Meeting with theanes anath ansnet anesthesiologist to go over the procedures for tomorrow. She passed the "are you unhealthy" test, so we're good to go. The cool thing is that she can continue to take her medication through the tube...they crush it up and feed it. Awesome. I can try the chicken fried steak experiment.
Toni. Call Dad and tell him that Mom is coming to Houston. He'll need to make his own supper tonight.
Wish us luck and pray for Jennifer. The journey is underway. We appreciate your thoughts and prayers.
O Saint Peregrine, you who have been called "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more: you who were favored with the vision of Jesus coming down from His Cross to heal your affliction, ask of God and Our Lady the cure of these sick persons whom we entrust to you Jennifer. Aided in this way by your powerful intercession, we shall sing praise to God for His great goodness and mercy. Amen.
We had the naturally rough start to the morning. Earlier than normal does not sit well with kids, even Ben, our early riser. But, we got them going and out the door in our proposed time.
By the time we hit I45, traffic was up to 50 minutes to downtown (MD Anderson is on the other side of downtown). So we decide to take the HOV lane. No sooner do we get in the HOV than we learn there's a stalled car down the road and an accident involving a Metro bus, both in the HOV...now we have nowhere to go because the HOV is bordered by 3 foot high concrete walls. We wait, and wait. LOOK! The main lanes are moving....and we're sitting here. Then, as is common in Houston, the HOV opens up. There's no sign of a stalled car or bus when we get to the "site". I've never figured out the magic involved there.
Unfortunately, the HOV kicks us out on the north side of downtown. We have to find our way back to I45 so we can continue to MD Anderson. After a couple of turns, snitty remarks, and a few gasps, the English-accented voice on my GPS finally calms down and points us in the right direction. We still have to navigate 45 through downtown, then transfer to 288....stop and go. We finally arrive at MD Anderson at 8:25. The appointment is at 8:30. Geez.
Oh...forgot to call Cat to wake her up in time to catch the bus. We start calling and texting, but learn later that she made it on time...whew.
Met with the surgeon and the physician's assistant. Here's the initial scoop.
He will surgically remove the cancer, which involves removing 1-2 centimeters surrounding the cancer to ensure he gets all of it. They are cognizant of the need to be aggressive yet considerate of the patient's need for functionality, but he said he'll have to go into the floor of the mouth....commence the flap and reconstructive surgery. He was also certain that he will perform a tracheostomy. But it should be removed before she goes home. I'll try to get some sound recordings before they remove the tube. Feeding tube will stay in at least a week to ensure the flap seals properly.
We expect 5-7 days in the hospital. During which time all the tubing will eventually be removed (assuming proper healing). I guess I will not be able to collect the biohazard goo at home. :(
Our participation in the lymphoseek trial was cancelled because insurance would not approve of it even though there was no cost to us or the insurance company as we understood. Go figure. Cutting costs when there are none to cut. There's probably a reason not made known to us, but it is disappointing that I will not have a nice night light tonight.
So we continued to the next, an imaging study. Step aside Glamour Shots... This guy rocks. Lots of photos and a survey.
Side note: the cafeteria on the first floor made a mean barbecue plate and a Philly cheese steak for us...we're stuffed.
Meeting with the
Toni. Call Dad and tell him that Mom is coming to Houston. He'll need to make his own supper tonight.
Wish us luck and pray for Jennifer. The journey is underway. We appreciate your thoughts and prayers.
O Saint Peregrine, you who have been called "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more: you who were favored with the vision of Jesus coming down from His Cross to heal your affliction, ask of God and Our Lady the cure of these sick persons whom we entrust to you Jennifer. Aided in this way by your powerful intercession, we shall sing praise to God for His great goodness and mercy. Amen.
Countdown C - 2
C-day/15-year-anniversary is in two days. Sorry for the late post...I started late and missed my 29th date. Also missed Scott and Traci's anniversary on the 28th....24 years? Old farts.
Today was a busy day. Wrapping up loose ends at work. Revisiting our "daily" schedule for the umpteenth time to make sure i have it right. Thanking all of our friends, family, neighbors, and coworkers for their understanding and help throughout these last few weeks. Without your help, we would be upside down right now with kids' activities and school.
The following is directed to D and G: "PEST?!?!?!". Really? I don't know whether to be bothered by you two calling me a pest, or my wife for not disagreeing with that statement. Thanks though for the thoughtful care package. Jennifer is very grateful.
We are packed and ready for the pre-op deluge tomorrow. 5 appointments throughout the day. The two primary are the surgeon and the anesthesiologist. Remember when I mentioned that you have to sign the waiver that you will not sue if something bad, like death, happens. I think we go thought that paperwork tomorrow.
Mom and Aunt Terry are coming in tomorrow to help with the kids. Thank you so much. I promise not to make you relive the exciting experience of my driving in Houston like I did last time. The kids are excited.
Tomorrow night we feast.....at the Black Eye Pea. That's where Jennifer wants to go for her last good meal for a little while. Good food. Kids love it. I told Jennifer that she would still get good meals even if she has to "eat" through a feeding tube for a couple of weeks. I've got the perfect plan that will make that work. Does anybody know if a vegetable juicer will purée a chicken fried stake well enough to shoot through a feeding tube? Anybody? Bueller?
On a sad note. I just learned of a tragic loss involving a friend/acquaintance from our college days, Karen Hamilton Gunn. I met her through mutual friends and even took her sister to Ring Dance many years ago. My thoughts and prayers go out to Karen's children, her sister, Susan, and her parents...all wonderful people. May you find peace through God in this time of darkness.
I have to get up early to start the day -- Yes. I know. Jennifer will wake me up to start the early day. I'm the writer here, so back off.
Again, thanks to everybody for their thoughts and prayers. We're fortunate to have good family and friends, and we welcome the prayers. I ask that you include others in your prayers that may not be as fortunate as we are, considering the circumstances.
O Saint Peregrine, you who have been called "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more: you who were favored with the vision of Jesus coming down from His Cross to heal your affliction, ask of God and Our Lady the cure of these sick persons whom we entrust to you Jennifer. Aided in this way by your powerful intercession, we shall sing praise to God for His great goodness and mercy. Amen.
Today was a busy day. Wrapping up loose ends at work. Revisiting our "daily" schedule for the umpteenth time to make sure i have it right. Thanking all of our friends, family, neighbors, and coworkers for their understanding and help throughout these last few weeks. Without your help, we would be upside down right now with kids' activities and school.
The following is directed to D and G: "PEST?!?!?!". Really? I don't know whether to be bothered by you two calling me a pest, or my wife for not disagreeing with that statement. Thanks though for the thoughtful care package. Jennifer is very grateful.
We are packed and ready for the pre-op deluge tomorrow. 5 appointments throughout the day. The two primary are the surgeon and the anesthesiologist. Remember when I mentioned that you have to sign the waiver that you will not sue if something bad, like death, happens. I think we go thought that paperwork tomorrow.
Mom and Aunt Terry are coming in tomorrow to help with the kids. Thank you so much. I promise not to make you relive the exciting experience of my driving in Houston like I did last time. The kids are excited.
Tomorrow night we feast.....at the Black Eye Pea. That's where Jennifer wants to go for her last good meal for a little while. Good food. Kids love it. I told Jennifer that she would still get good meals even if she has to "eat" through a feeding tube for a couple of weeks. I've got the perfect plan that will make that work. Does anybody know if a vegetable juicer will purée a chicken fried stake well enough to shoot through a feeding tube? Anybody? Bueller?
On a sad note. I just learned of a tragic loss involving a friend/acquaintance from our college days, Karen Hamilton Gunn. I met her through mutual friends and even took her sister to Ring Dance many years ago. My thoughts and prayers go out to Karen's children, her sister, Susan, and her parents...all wonderful people. May you find peace through God in this time of darkness.
I have to get up early to start the day -- Yes. I know. Jennifer will wake me up to start the early day. I'm the writer here, so back off.
Again, thanks to everybody for their thoughts and prayers. We're fortunate to have good family and friends, and we welcome the prayers. I ask that you include others in your prayers that may not be as fortunate as we are, considering the circumstances.
O Saint Peregrine, you who have been called "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more: you who were favored with the vision of Jesus coming down from His Cross to heal your affliction, ask of God and Our Lady the cure of these sick persons whom we entrust to you Jennifer. Aided in this way by your powerful intercession, we shall sing praise to God for His great goodness and mercy. Amen.
Monday, May 28, 2012
Countdown C - 3
Three more days.
It was a great Memorial Day. Went fishing. Everybody caught something, mostly perch. Jake had the largest catch, a bass. Everybody had fun, except me... I had to keep taking the fish off of Grace's hook (she caught the most). I think she caught five on the same worm, about 20 - 30 seconds after casting each time. She, Catherine, and Ben had the casting down to an art form. Jake was doing well also.
Shot BB guns also. Had a blast.
God bless our soldiers, past, present, and future.
Sorry for the mundane day-to-day recap, but it felt good to forget for a while. Now we have to tie up loose ends at work and prep for this week.
2...
1...
Then
C day
Thanks to those keeping Jennifer in their prayers.
O Saint Peregrine, you who have been called "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more: you who were favored with the vision of Jesus coming down from His Cross to heal your affliction, ask of God and Our Lady the cure of these sick persons whom we entrust to you Jennifer. Aided in this way by your powerful intercession, we shall sing praise to God for His great goodness and mercy. Amen.
It was a great Memorial Day. Went fishing. Everybody caught something, mostly perch. Jake had the largest catch, a bass. Everybody had fun, except me... I had to keep taking the fish off of Grace's hook (she caught the most). I think she caught five on the same worm, about 20 - 30 seconds after casting each time. She, Catherine, and Ben had the casting down to an art form. Jake was doing well also.
Shot BB guns also. Had a blast.
God bless our soldiers, past, present, and future.
Sorry for the mundane day-to-day recap, but it felt good to forget for a while. Now we have to tie up loose ends at work and prep for this week.
2...
1...
Then
Thanks to those keeping Jennifer in their prayers.
O Saint Peregrine, you who have been called "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more: you who were favored with the vision of Jesus coming down from His Cross to heal your affliction, ask of God and Our Lady the cure of these sick persons whom we entrust to you Jennifer. Aided in this way by your powerful intercession, we shall sing praise to God for His great goodness and mercy. Amen.
Sunday, May 27, 2012
Countdown C - 4
Four more days to go.
We missed Greg's wedding in Oklahoma. We hope he and Diane had a wonderful wedding and wish them the best in their life together. I tried texting him today, but he seems to uppity to respond....as if the honeymoon is all about him or something. Sheesh. Good luck anyway.
We're at Roy and Beth's. Had a great time today. Kids were shooting BB guns, running with the dogs, catching toads, and chasing bugs. Nothing like being in the country to take your mind off of everything.
We're "stuffed" on stuffed jalapeños, pork loin (stuffed with cream cheese/jalapeño mixed), and beef fajitas. Jennifer's getting some quality food time this week.
Tomorrow is Memorial Day. Well do a little fishing, maybe some more shooting, then come home for the final countdown. Most importantly, well remember our soldiers.
God bless our soldiers. Those that went before us, those serving us today, and those that feel the call to serve in the future. Without you we wouldn't enjoy the country we have today. Without some politicians, we could enjoy the country today (please vote). Sorry to interject politics, but voting is a very important responsibility. If you don't exercise it now, you may not get a chance to in the future.
Thanks to all the family and friends helping us out in this time of need. Thank you for your prayers. Please continue to pray for Jennifer until we beat this thing.
O Saint Peregrine, you who have been called "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more: you who were favored with the vision of Jesus coming down from His Cross to heal your affliction, ask of God and Our Lady the cure of these sick persons whom we entrust to you Jennifer. Aided in this way by your powerful intercession, we shall sing praise to God for His great goodness and mercy. Amen.
We missed Greg's wedding in Oklahoma. We hope he and Diane had a wonderful wedding and wish them the best in their life together. I tried texting him today, but he seems to uppity to respond....as if the honeymoon is all about him or something. Sheesh. Good luck anyway.
We're at Roy and Beth's. Had a great time today. Kids were shooting BB guns, running with the dogs, catching toads, and chasing bugs. Nothing like being in the country to take your mind off of everything.
We're "stuffed" on stuffed jalapeños, pork loin (stuffed with cream cheese/jalapeño mixed), and beef fajitas. Jennifer's getting some quality food time this week.
Tomorrow is Memorial Day. Well do a little fishing, maybe some more shooting, then come home for the final countdown. Most importantly, well remember our soldiers.
God bless our soldiers. Those that went before us, those serving us today, and those that feel the call to serve in the future. Without you we wouldn't enjoy the country we have today. Without some politicians, we could enjoy the country today (please vote). Sorry to interject politics, but voting is a very important responsibility. If you don't exercise it now, you may not get a chance to in the future.
Thanks to all the family and friends helping us out in this time of need. Thank you for your prayers. Please continue to pray for Jennifer until we beat this thing.
O Saint Peregrine, you who have been called "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more: you who were favored with the vision of Jesus coming down from His Cross to heal your affliction, ask of God and Our Lady the cure of these sick persons whom we entrust to you Jennifer. Aided in this way by your powerful intercession, we shall sing praise to God for His great goodness and mercy. Amen.
Saturday, May 26, 2012
Countdown C - 5
What a day. Started out sticky, then just got plain hot. Spent most of it at the swim meet. CUDAS won. Ben and Grace both shaved their times down. Great job kids.
Family came in and we had a great meal at Glenn's. Burgers, hot dogs, zumo's, boudin,grilled corn. Now we're tired.
Tomorrow is family and then to Roy and Beth. Followed by Memorial Day. Thanks to our military for all that they do. Brave people.
5 more days............
In case you haven't caught on, I will continue to copy the Prayer to Saint Peregrine until we lick this thing. I encourage you to recite this prayer and I thank everyone for keeping us (especially Jennifer) in our prayers.
O Saint Peregrine, you who have been called "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more: you who were favored with the vision of Jesus coming down from His Cross to heal your affliction, ask of God and Our Lady the cure of these sick persons whom we entrust to you Jennifer. Aided in this way by your powerful intercession, we shall sing praise to God for His great goodness and mercy. Amen.
Family came in and we had a great meal at Glenn's. Burgers, hot dogs, zumo's, boudin,grilled corn. Now we're tired.
Tomorrow is family and then to Roy and Beth. Followed by Memorial Day. Thanks to our military for all that they do. Brave people.
5 more days............
In case you haven't caught on, I will continue to copy the Prayer to Saint Peregrine until we lick this thing. I encourage you to recite this prayer and I thank everyone for keeping us (especially Jennifer) in our prayers.
O Saint Peregrine, you who have been called "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more: you who were favored with the vision of Jesus coming down from His Cross to heal your affliction, ask of God and Our Lady the cure of these sick persons whom we entrust to you Jennifer. Aided in this way by your powerful intercession, we shall sing praise to God for His great goodness and mercy. Amen.
Friday, May 25, 2012
Countdown C-6
6 days to go.
Attended awards ceremonies for school. Congratulations go out to all the kids.
I took the opportunity to stop by the Catholic bookstore today to pick up a Saint Peregrine medal and a Chaplet for Jennifer. Take a moment to read his story:
http://www.americancatholic.org/features/saints/saint.aspx?id=1373.
Sorry I could not direct-link it. I tried to do the link thing in this blog, but found out that I'm too old to learn new tricks. I kept getting an "ID-Ten-T" error. I probably need to get a kid to do this for me.
I also received a lecture from the neighbor on being a good caregiver...I always seem to get a lecture from her. It's fun to egg those on sometimes. I don't know why she doesn't trust me. :-). (Don't worry. Jennifer will be cared for.
Other than the above mentions, we are going through the usual daily routines....gymnastics, swim meet setup (meet is tomorrow), clean house, yell at kids .... Might as well get it out of the system before surgery. I'm kidding people. We don't yell at them. We beat them. Wait...we only yell at them. Spoiled kids. I should quit thinking out loud. :-/.
Tomorrow is the 5-day countdown, busy with swim meet, visit with Jennifer's brother(s), and prep for visit with Roy and Beth ---relax the brain for a little while.
Everybody have a safe and happy Memorial Day. God bless our soldiers -- current and past, living and dead. It's a tremendous sacrifice you make to protect our freedoms and words cannot express my gratitude enough.
As always, thanks to everyone keeping Jennifer in their prayers.
O Saint Peregrine, you who have been called "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more: you who were favored with the vision of Jesus coming down from His Cross to heal your affliction, ask of God and Our Lady the cure of these sick persons whom we entrust to you Jennifer. Aided in this way by your powerful intercession, we shall sing praise to God for His great goodness and mercy. Amen.
Attended awards ceremonies for school. Congratulations go out to all the kids.
I took the opportunity to stop by the Catholic bookstore today to pick up a Saint Peregrine medal and a Chaplet for Jennifer. Take a moment to read his story:
http://www.americancatholic.org/features/saints/saint.aspx?id=1373.
Sorry I could not direct-link it. I tried to do the link thing in this blog, but found out that I'm too old to learn new tricks. I kept getting an "ID-Ten-T" error. I probably need to get a kid to do this for me.
I also received a lecture from the neighbor on being a good caregiver...I always seem to get a lecture from her. It's fun to egg those on sometimes. I don't know why she doesn't trust me. :-). (Don't worry. Jennifer will be cared for.
Other than the above mentions, we are going through the usual daily routines....gymnastics, swim meet setup (meet is tomorrow), clean house, yell at kids .... Might as well get it out of the system before surgery. I'm kidding people. We don't yell at them. We beat them. Wait...we only yell at them. Spoiled kids. I should quit thinking out loud. :-/.
Tomorrow is the 5-day countdown, busy with swim meet, visit with Jennifer's brother(s), and prep for visit with Roy and Beth ---relax the brain for a little while.
Everybody have a safe and happy Memorial Day. God bless our soldiers -- current and past, living and dead. It's a tremendous sacrifice you make to protect our freedoms and words cannot express my gratitude enough.
As always, thanks to everyone keeping Jennifer in their prayers.
O Saint Peregrine, you who have been called "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more: you who were favored with the vision of Jesus coming down from His Cross to heal your affliction, ask of God and Our Lady the cure of these sick persons whom we entrust to you Jennifer. Aided in this way by your powerful intercession, we shall sing praise to God for His great goodness and mercy. Amen.
Thursday, May 24, 2012
Countdown to C-day
We're having a much better day.
Jennifer got her Bonnie Cake......thank you Bonnie.
We're feeling the prayers. Thanks for those and the intercessions.
I fixed the settings for this blog, so you can now post comments....if there is a delay, it's because I put a delay on the actual publishing of comments until I have a chance to review and approve. Heck, my family is reading this. Anyone that knows us also knows that it's not safe to open the gates for my family to post anything they want.
Since we're not helping Jennifer with our ability to learn sign language, I've been downloading and testing free iPad apps that convert text to speech. As anyone with a scientific background knows, you have to have a control group, or baseline on which to test and compare results. I chose a phrase that has relevance to our early foray into sign language, "I'm sorry my fart exploded."
I have heard this phrase in a British accent, American accent, and a George W Bush (#43) accent. I cannot bring myself to download the Barry Santero (Obama) app. I'm still testing and may continue for awhile.
We just watched a rerun of Rules of Engagement, where the wife couldn't talk (wow...what a coincidence). Her husband was WAAAY worse at caring for her than I plan to be. (Did that come out right?)
Regardless, we have a long weekend ahead and Jennifer wants to partake in some indulgences that she will miss for a while: eating out, movie popcorn, eating out, yelling at kids, eating out... On top of that, we have another home swim meet to work. Kevin's coming by. And we'll visit Roy and Beth.
We hope everybody has a safe and happy Memorial Day Weekend. God bless our soldiers. They give more than we can ever hope to give (Thank you Chad). Stay safe.
Again, thank you for your prayers.
O Saint Peregrine, you who have been called "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more: you who were favored with the vision of Jesus coming down from His Cross to heal your affliction, ask of God and Our Lady the cure of these sick persons whom we entrust to you Jennifer. Aided in this way by your powerful intercession, we shall sing praise to God for His great goodness and mercy. Amen.
Reconstructive Roller Coaster
Have you ever had one of those days that didn't feel right? I think we did today (May 23rd).
We met with the Reconstructive Center plastic surgeons today. The lead surgeon is one of the best in the world. The other is the resident surgeon on his staff. Again, as with the rest of the staff, they were both personable people. However, our meeting with them was like "BAM!!!" A slap in the face. A wake-up call. This is how it is.
Just like the initial surgical consult a couple of weeks ago, the resident surgeon came in, asked some questions, seemed very upbeat about the procedure possibilities, then left to consult with the lead. And again, the lead came in and told us what he was going to do.... "Going to DO?!?" Yet, he was describing the worst-case scenario. It sounded like this piece of the procedure was set in stone. OUR EYES ARE OPEN. The roller coaster is going up.
Our initial takeaway a couple of weeks ago was that plastic surgery (skin graft) may be necessary if our primary surgeon has to go wide in cutting out thecancer. Of course, we talked the spectrum of possibilities from a simple "alo-derm" (sp?) or synthetic skin application, on to the skin graft, then on to the skin flap as a worst case surgical scenario (Skin graft which include arteries from the arm).
Today --- the talk focused on the skin flap, as if it were a done deal. The roller coaster is about to crest that first big drop.
Let's talk a little about the flap procedure (as I understand it).
IF it's necessary for the primary surgeon to cut into the floor of the mouth in the effort to remove thecancerous tissue, then the flap will most likely be necessary. Apparently it's very hollow underneath the floor of the mouth and you have to cover up the holes (who'd a thunk it). I could be wrong, but that's how I envision it.
*I would use a different choice of words, but am trying to watch the language as I don't know who is in this audience.
I offered a suggestion to the resident when he first went into the details around grafting. I mentioned that, instead of using skin from the forearm, they should pull it from the gluteal area. That way Jennifer can stay true to her word when she tells me to kiss her........but I digress.
We did have a lighter moment (really the only one in this meeting) when the doctor was manipulating the stomach skin to test for viability....He said he'd take what was necessary to graft on the forearm, Jennifer said to take it all. I think he mentioned he'd take out the extra for free (tummy tuck?) Do you mean I really get to get Jennifer plastic surgery for our anniversary? Sweet! Scratch that off my list of to-do's.
Now, some of the shocker. The surgery and recovery as the plastic surgeons were describing, will be more intense than we originally believed. Again, the primary plastic surgeon approached us as if the flap was the procedure he would use (worst-case). Jennifer and I are both HOPING AND PRAYING that he was only approaching us with the "worst-case" scenario so we will not be surprised if that is indeed the case.
They gave us handouts on after-surgery wound care, which involves the cleaning of drainage tubes, emptying drainage reservoirs, and all kinds of othergross cool stuff. However, he mentioned a couple of things we didn't hear in our earlier consults -- a Trachiostomy and the feeding tube (for 2 weeks or so)-- There's our slap in the face. My recollection from the initial meetings was that a trach wasn't necessary. But then again, I'm not sure it was every mentioned during our initial consults. Aaaaarrrrrggghhhh. A question we should have asked. The trach is typically necessary if there will be swelling or obstruction that would lend difficulty to breathing. I wonder if they can feed an oxygen tube down her nasal passage? Is that an option? I haven't heard. Another question to ask. Here comes the double-loop, twist part of the ride.
During the initial consult, we were told that Jennifer would most likely be on soft foods shortly after the surgery -- like a day or two. However, as described today, she may be on a feeding tube for a couple of weeks. This falls in line with the new fad diet that the celebrities are doing. Again, I hope this is for worst-case scenario informational purposes only.
Right now, I have the "So You Had a Bad Day" song going through my head. Really, because it's a catchy tune and I've always liked the song. But it somehow fit into today.
Okay. Our day has been rough. We have more precise information that doesn't appear to favor our initial assessment. It's upset us a bit, but it's part of the roller coaster ride. As I stated in earlier posts (I think), it's the not knowing that scares us. Now we know more. It's still a bit daunting. Is it right to know more? Does it help us? I can't say. However, we have to face the situation whether we know it or not. And we will.
Of everything presented today, the only choice Jennifer had to make was "from which arm do we take the graft." And that was decided by the arm in which Jennifer does NOT hold a pen when she writes. So she didn't even get to make that choice. Dang. The rest of the decisions will be made on the operating table by the surgeons: Alo-derm (sp?), skin graft, skin flap, trachiostomy, tummy tuck.
Oh. As we left the Reconstructive Surgery consult, another person in a white lab coat came chasing after us to ask if Jennifer would participate in a study they were conducting where he would take 2D and 3D images of Jennifer: before, right after, 2 months, 3 months, 6 months, and 12 months, etc. Supposedly very non-invasive. We both felt like we were at a time-share pitch....oh well.
I'm sure your tired of reading this long-winded synopsis. Thank you for humoring me till the end. The roller coaster ride is continuing. Let's get to the end.
Finally, I received an email from the Knights of Columbus to pray for a fellow night stricken withcancer and not doing well. Our prayers go out to him. At the end of the email was the Prayer to Saint Peregrine, the Patron Saint of Cancer. Why didn't I think of this earlier?
I've copied the prayer below and asked that you pray to Saint Peregrine for his intervention. This really does help us.
c-7 days and counting
Jennifer, I Love You.
God Bless.
We met with the Reconstructive Center plastic surgeons today. The lead surgeon is one of the best in the world. The other is the resident surgeon on his staff. Again, as with the rest of the staff, they were both personable people. However, our meeting with them was like "BAM!!!" A slap in the face. A wake-up call. This is how it is.
Just like the initial surgical consult a couple of weeks ago, the resident surgeon came in, asked some questions, seemed very upbeat about the procedure possibilities, then left to consult with the lead. And again, the lead came in and told us what he was going to do.... "Going to DO?!?" Yet, he was describing the worst-case scenario. It sounded like this piece of the procedure was set in stone. OUR EYES ARE OPEN. The roller coaster is going up.
Our initial takeaway a couple of weeks ago was that plastic surgery (skin graft) may be necessary if our primary surgeon has to go wide in cutting out the
Today --- the talk focused on the skin flap, as if it were a done deal. The roller coaster is about to crest that first big drop.
Let's talk a little about the flap procedure (as I understand it).
IF it's necessary for the primary surgeon to cut into the floor of the mouth in the effort to remove the
- To make the flap, tissue is removed from the forearm. An artery is "borrowed" from the arm -- The tissue and artery are then grafted into the oral cavity where it's needed.
- The forearm has two arteries going into it. The doctor chose the Ulna-side artery because the physical scar can be better hidden by the natural way a person holds their arms.
- Then, skin is "shaved" from another area of the body, usually the thigh or the stomach, and grafted to the forearm to cover the hole left from the "borrowed" material.
*I would use a different choice of words, but am trying to watch the language as I don't know who is in this audience.
I offered a suggestion to the resident when he first went into the details around grafting. I mentioned that, instead of using skin from the forearm, they should pull it from the gluteal area. That way Jennifer can stay true to her word when she tells me to kiss her........but I digress.
We did have a lighter moment (really the only one in this meeting) when the doctor was manipulating the stomach skin to test for viability....He said he'd take what was necessary to graft on the forearm, Jennifer said to take it all. I think he mentioned he'd take out the extra for free (tummy tuck?) Do you mean I really get to get Jennifer plastic surgery for our anniversary? Sweet! Scratch that off my list of to-do's.
Now, some of the shocker. The surgery and recovery as the plastic surgeons were describing, will be more intense than we originally believed. Again, the primary plastic surgeon approached us as if the flap was the procedure he would use (worst-case). Jennifer and I are both HOPING AND PRAYING that he was only approaching us with the "worst-case" scenario so we will not be surprised if that is indeed the case.
They gave us handouts on after-surgery wound care, which involves the cleaning of drainage tubes, emptying drainage reservoirs, and all kinds of other
During the initial consult, we were told that Jennifer would most likely be on soft foods shortly after the surgery -- like a day or two. However, as described today, she may be on a feeding tube for a couple of weeks. This falls in line with the new fad diet that the celebrities are doing. Again, I hope this is for worst-case scenario informational purposes only.
Right now, I have the "So You Had a Bad Day" song going through my head. Really, because it's a catchy tune and I've always liked the song. But it somehow fit into today.
Okay. Our day has been rough. We have more precise information that doesn't appear to favor our initial assessment. It's upset us a bit, but it's part of the roller coaster ride. As I stated in earlier posts (I think), it's the not knowing that scares us. Now we know more. It's still a bit daunting. Is it right to know more? Does it help us? I can't say. However, we have to face the situation whether we know it or not. And we will.
Of everything presented today, the only choice Jennifer had to make was "from which arm do we take the graft." And that was decided by the arm in which Jennifer does NOT hold a pen when she writes. So she didn't even get to make that choice. Dang. The rest of the decisions will be made on the operating table by the surgeons: Alo-derm (sp?), skin graft, skin flap, trachiostomy, tummy tuck.
Oh. As we left the Reconstructive Surgery consult, another person in a white lab coat came chasing after us to ask if Jennifer would participate in a study they were conducting where he would take 2D and 3D images of Jennifer: before, right after, 2 months, 3 months, 6 months, and 12 months, etc. Supposedly very non-invasive. We both felt like we were at a time-share pitch....oh well.
I'm sure your tired of reading this long-winded synopsis. Thank you for humoring me till the end. The roller coaster ride is continuing. Let's get to the end.
Finally, I received an email from the Knights of Columbus to pray for a fellow night stricken with
I've copied the prayer below and asked that you pray to Saint Peregrine for his intervention. This really does help us.
O Saint Peregrine, you who have been called "The Wonder-Worker" because of the numerous miracles which you have obtained from God for those who have had recourse to you, who for so many years bore in your own flesh this cancerous disease that destroys the very fiber of our being, and who had recourse to the source of all grace when the power of man could do no more: you who were favored with the vision of Jesus coming down from His Cross to heal your affliction, ask of God and Our Lady the cure of these sick persons whom we entrust to you Jennifer. Aided in this way by your powerful intercession, we shall sing praise to God for His great goodness and mercy. Amen.
Jennifer, I Love You.
God Bless.
Tuesday, May 22, 2012
Don't open this. There's nothing to see here
I told you there is nothing to see here. Nothing new to report.
Can't you follow directions?
Please check back tomorrow for an update.
Thank you.
Can't you follow directions?
Please check back tomorrow for an update.
Thank you.
Saturday, May 19, 2012
Swim Meet
We had our first swim meet.
We won.
Grace and Ben shaved some time off in some areas, lost a little in others. Otherwise, a very good meet.
Go CUDAS. It was a long day. Tired now.
Nothing new on the IGC front...other than a couple of times where Jennifer was rolling her eyes and mumbling she needs to get a new caregiver. Again, I dont understand why she keeps saying this. Thanks Roy and Beth for egging that on. ;-)
I expect her to come in behind me and post an add like you see on some of the "free" websites.
"Caregivers in your area:
There are Caregivers in the Spring area waiting to meet you.
Click on the link below to meet them."
Then, in small print: "credit card required."
I hope everyone Is having a good weekend. We are. Thank you for keeping us in your prayers.
We won.
Grace and Ben shaved some time off in some areas, lost a little in others. Otherwise, a very good meet.
Go CUDAS. It was a long day. Tired now.
Nothing new on the IGC front...other than a couple of times where Jennifer was rolling her eyes and mumbling she needs to get a new caregiver. Again, I dont understand why she keeps saying this. Thanks Roy and Beth for egging that on. ;-)
I expect her to come in behind me and post an add like you see on some of the "free" websites.
"Caregivers in your area:
There are Caregivers in the Spring area waiting to meet you.
Click on the link below to meet them."
Then, in small print: "credit card required."
I hope everyone Is having a good weekend. We are. Thank you for keeping us in your prayers.
Friday, May 18, 2012
Slow Weekend
We have a slow weekend ahead.
Gymnastics
T-ball end of season party
Softball end of season party
CUDAS home swim meet (including set up and tear down) -- GO CUDAS
Oil Changes
Church
Yard work
House cleaning
I think there's something else, but I can't remember.
Oh yeah review all things insurance too. It's not just paperwork. It's working with a case manager, identifying procedureS and whether they are covered, checking your wallet to make sure it hasn't been lifted.......
We are already having our fun with the insurance company. Initially they said Jennifer's not covered (we had just switched her over tmint insurance in January). Kinda embarrassing at the dentist to have this happen, but we got it rectified by the end of her appointment. Its ironic they had no problem in February when she went to the doctor. They sent me a form asking for clarification. I promptly signed and returned.
Why do I pay my premiums? Oh. I remember. I'm an insurance philanthropist.
Now they want to deny the initial claims from the dentist because they believe Jennifer has primary coverage elsewhere. I understand their concern about protecting themselves and potential fraud, but I point again to the February doctor visit. Why not back then?
Luckily, my HR rep is doing an awesome job of knocking heads and keeping us pointed in the right direction. Kudos to her. My only regret is that I waited too long before I notified her, so I'm getting a late start on some of the paperwork and prep work. What can I say, I haven't had to do it before....sue me.
Next week
Plastic surgeon visit
End-of-year award ceremonies
Band recital.
Then,
Swim meet (every weekend)
Memorial weekend (yaaaayyyyyyy). God bless all those who gave their lives to protect ours...soldiers, police, firemen, all heroes.
Followed by
Pre-op day -- all day
Then May 31.
Our 15 year anniversary (Wow. You put up with me that long...you must be stupid or something.)
Last day of school
4-6 hours of surgery
Recovery
All the attention in the world....at least as much as I can muster with 4 rapscallions running around.
Thanks to everyone for their prayers.
Gymnastics
T-ball end of season party
Softball end of season party
CUDAS home swim meet (including set up and tear down) -- GO CUDAS
Oil Changes
Church
Yard work
House cleaning
I think there's something else, but I can't remember.
Oh yeah review all things insurance too. It's not just paperwork. It's working with a case manager, identifying procedureS and whether they are covered, checking your wallet to make sure it hasn't been lifted.......
We are already having our fun with the insurance company. Initially they said Jennifer's not covered (we had just switched her over tmint insurance in January). Kinda embarrassing at the dentist to have this happen, but we got it rectified by the end of her appointment. Its ironic they had no problem in February when she went to the doctor. They sent me a form asking for clarification. I promptly signed and returned.
Why do I pay my premiums? Oh. I remember. I'm an insurance philanthropist.
Now they want to deny the initial claims from the dentist because they believe Jennifer has primary coverage elsewhere. I understand their concern about protecting themselves and potential fraud, but I point again to the February doctor visit. Why not back then?
Luckily, my HR rep is doing an awesome job of knocking heads and keeping us pointed in the right direction. Kudos to her. My only regret is that I waited too long before I notified her, so I'm getting a late start on some of the paperwork and prep work. What can I say, I haven't had to do it before....sue me.
Next week
Plastic surgeon visit
End-of-year award ceremonies
Band recital.
Then,
Swim meet (every weekend)
Memorial weekend (yaaaayyyyyyy). God bless all those who gave their lives to protect ours...soldiers, police, firemen, all heroes.
Followed by
Pre-op day -- all day
Then May 31.
Our 15 year anniversary (Wow. You put up with me that long...you must be stupid or something.)
Last day of school
4-6 hours of surgery
Recovery
All the attention in the world....at least as much as I can muster with 4 rapscallions running around.
Thanks to everyone for their prayers.
Wednesday, May 16, 2012
Speech Pathology
We met with the speech pathologist yesterday. We had just learned of the appointment the night before when we checked our voice mail ...bad timing.
MD Anderson uses floors and elevators as the guidance for finding the area you need. For example, the Head and Neck Center is on The 10th Floor near Elevator A. MD Anderson has several buildings on their campus. We will primarily utilize the Main building and the Mays building. They are a city block apart, about a quarter mile via the overhead skyway.
We arrived for our appointment at the Mays building, near elevator R, 30 minutes ahead of schedule. So far, so good. I checked my calendar to confirm our floor. Uh-oh. Our appointment is on floor 10 of the MAIN Building, Elevator A. We confused this appointment with the plastic surgeon appointment we have set for next week. Time to book-it through the skyway.....not a good start.
Btw, the skyway walk was nice.
The pathologist was very personable
We discussed the range of possibilities for removing the tumor and their impact on the tongue and speech.
I forgot to ask if he'll teach me to roll my R's, but I did ask if he'll sign an order for Jennifer not to yell for at least 6 months -- you know, because of the strain put on the tongue. Right? He almost went along with it, but backed out at the last minute (most likely due to some inappropriate thing I said). Oh well. It was worth a try.
The bottom line is that we will not know the full impact to speech and swallowing until the doctors get in there to remove everything. Then about two to four weeks for post op swelling to go down.
He demonstrated some of the intricacies of forming audible letters, especially those most likely to be affected by tongue damage -- s, l, k, c, g. Try these letters. Envision how your tongue behaves as you form the sound. The tongue is made of four sets of muscles interlaced among themselves. That's why you can maneuver that thing to form sounds, eat sunflower seeds, shoot seeds, play a little tonsil hockey...all taken for granted. Cut into the muscle, possible graft skin onto the exposed area, and you restrict some of the flexibility. How much? We don't know. For the record, he was optimistic and we left his consult feeling pretty good.
Side-note:
Jennifer and I both almost busted out laughing when the pathologist demonstrated the "s" sound in a case where someone would have moderate-to-severe tongue damage. Spit flew out of the mouth. I had a vision of Sylvester the Cat.
Additional side-note:
We have decided to change a few names during Jennifer's recovery and rehab period to ease the strain on the tongue. Cat, Gray. You will now be called "Ben 1" and "Ben 2" respectively. Ben, Jake. You will be called "Ben 3" and "Hey you" respectively.
After we left the speech consult, we met with the clinical trial docs...this particular trial is a third for Lymphoseek. The first two trials were for melanoma and breast cancer and have been submitted for FDA approval. This trial apparently will help the drug company forego the use of Head and Neck as an off-label use and move it into a use they can publicly advertise. Hopefully well still help someone down the road with the study other than just the bottom line to the drug company. ;-)
The intent of this trial is two-fold: to test a lymphatic tracer element that will actually bind to receptor cells in the lymph nodes rather than pass through the system too quickly to trace as the more common tracers do, and to identify the Sentinal nodes and determine whether future surgeons can selectively remove nodes (sentinels) to cut off the cancer path rather than remove all nodes in the area.
The clinical doctor was very forthcoming. Again, we felt fine. Jennifer did ask, on my behalf, if I'll get to use her as a nightlight after they inject her. For the record, the answer was No.
Next week, our meeting is with the plastic surgeon (one of the best in the nation). The meeting is in the MAYS Building. Maybe well get the location right this time.
P.S. I Apologize for those expecting a witty story (assuming my others were witty). I was really fascinated by the consults today and decided to share some of that info, thus limiting my award-winning wit.
My parents had the World Book encyclopedia when I was a kid. I believe they were from the year 1969. I always liked to look up the human body because it had the clear plastic pages containing different systems in the body: Skeleton, digestive, respiratory, circulatory, nervous, and muscular. Each page would overlay the other to help "build" the human body. It felt like I was looking at those today. It's amazing what God has put together. Pretty cool.
For those who don't like my humor.....you're welcome. ;-). Glad we could oblige.
Overall, yesterday was a very good day from a medical psyche perspective.
I'm tired. Jennifer's tired. The light is at the end of the tunnel. We see it. We'll get there.
Yet again, I continue to express my thanks to all those keeping us in their thoughts and prayers. It's helping us get through this.
Love to all.
MD Anderson uses floors and elevators as the guidance for finding the area you need. For example, the Head and Neck Center is on The 10th Floor near Elevator A. MD Anderson has several buildings on their campus. We will primarily utilize the Main building and the Mays building. They are a city block apart, about a quarter mile via the overhead skyway.
We arrived for our appointment at the Mays building, near elevator R, 30 minutes ahead of schedule. So far, so good. I checked my calendar to confirm our floor. Uh-oh. Our appointment is on floor 10 of the MAIN Building, Elevator A. We confused this appointment with the plastic surgeon appointment we have set for next week. Time to book-it through the skyway.....not a good start.
Btw, the skyway walk was nice.
The pathologist was very personable
We discussed the range of possibilities for removing the tumor and their impact on the tongue and speech.
I forgot to ask if he'll teach me to roll my R's, but I did ask if he'll sign an order for Jennifer not to yell for at least 6 months -- you know, because of the strain put on the tongue. Right? He almost went along with it, but backed out at the last minute (most likely due to some inappropriate thing I said). Oh well. It was worth a try.
The bottom line is that we will not know the full impact to speech and swallowing until the doctors get in there to remove everything. Then about two to four weeks for post op swelling to go down.
He demonstrated some of the intricacies of forming audible letters, especially those most likely to be affected by tongue damage -- s, l, k, c, g. Try these letters. Envision how your tongue behaves as you form the sound. The tongue is made of four sets of muscles interlaced among themselves. That's why you can maneuver that thing to form sounds, eat sunflower seeds, shoot seeds, play a little tonsil hockey...all taken for granted. Cut into the muscle, possible graft skin onto the exposed area, and you restrict some of the flexibility. How much? We don't know. For the record, he was optimistic and we left his consult feeling pretty good.
Side-note:
Jennifer and I both almost busted out laughing when the pathologist demonstrated the "s" sound in a case where someone would have moderate-to-severe tongue damage. Spit flew out of the mouth. I had a vision of Sylvester the Cat.
Additional side-note:
We have decided to change a few names during Jennifer's recovery and rehab period to ease the strain on the tongue. Cat, Gray. You will now be called "Ben 1" and "Ben 2" respectively. Ben, Jake. You will be called "Ben 3" and "Hey you" respectively.
After we left the speech consult, we met with the clinical trial docs...this particular trial is a third for Lymphoseek. The first two trials were for melanoma and breast cancer and have been submitted for FDA approval. This trial apparently will help the drug company forego the use of Head and Neck as an off-label use and move it into a use they can publicly advertise. Hopefully well still help someone down the road with the study other than just the bottom line to the drug company. ;-)
The intent of this trial is two-fold: to test a lymphatic tracer element that will actually bind to receptor cells in the lymph nodes rather than pass through the system too quickly to trace as the more common tracers do, and to identify the Sentinal nodes and determine whether future surgeons can selectively remove nodes (sentinels) to cut off the cancer path rather than remove all nodes in the area.
The clinical doctor was very forthcoming. Again, we felt fine. Jennifer did ask, on my behalf, if I'll get to use her as a nightlight after they inject her. For the record, the answer was No.
Next week, our meeting is with the plastic surgeon (one of the best in the nation). The meeting is in the MAYS Building. Maybe well get the location right this time.
P.S. I Apologize for those expecting a witty story (assuming my others were witty). I was really fascinated by the consults today and decided to share some of that info, thus limiting my award-winning wit.
My parents had the World Book encyclopedia when I was a kid. I believe they were from the year 1969. I always liked to look up the human body because it had the clear plastic pages containing different systems in the body: Skeleton, digestive, respiratory, circulatory, nervous, and muscular. Each page would overlay the other to help "build" the human body. It felt like I was looking at those today. It's amazing what God has put together. Pretty cool.
For those who don't like my humor.....you're welcome. ;-). Glad we could oblige.
Overall, yesterday was a very good day from a medical psyche perspective.
I'm tired. Jennifer's tired. The light is at the end of the tunnel. We see it. We'll get there.
Yet again, I continue to express my thanks to all those keeping us in their thoughts and prayers. It's helping us get through this.
Love to all.
Tuesday, May 15, 2012
Pre-Op Schedule
We were caught a little off-guard Monday.
It's amazing how the process seems to move slowly, then suddenly it kicks into high gear. As of 11:30 Monday morning, there was nothing new to report. Then all of a sudden, by 11:45 a.m., we have 5 pre-op consultations scheduled. The first one scheduled for 11:00 a.m. Tuesday. We didn't catch it until we arrived home after work and heard the voicemail. Time to Scramble.
The Appointments:
Special Thanks and Appreciation go out to:
My usual disclaimers apply.
It's amazing how the process seems to move slowly, then suddenly it kicks into high gear. As of 11:30 Monday morning, there was nothing new to report. Then all of a sudden, by 11:45 a.m., we have 5 pre-op consultations scheduled. The first one scheduled for 11:00 a.m. Tuesday. We didn't catch it until we arrived home after work and heard the voicemail. Time to Scramble.
The Appointments:
- Speech Appraisal Consult -- There is a lot of rehab that Jennifer will have to go through, so this is an important first step for establishing a baseline and expectations. I wonder if the consulting doctor will teach me how to roll my R's. I've always wanted to do that. Catherine can, and it makes me jealous. I know...I'm not the patient -- maybe I can get Jennifer to ask.
- Reconstructive Surgery Consult -- As fortunate as we are that Jennifer doesn't appear to need Radiation or Chemo, she'll still have to go through the surgical phase, which will involve some reconstruction of the tongue, skin grafts on the tongue and neck, and rehab. Maybe if she sweet-talks the plastic surgeons enough, they'll through in a cosmetic bonus of her choosing. Please see my special anniversary message under the Surgery heading below.
- Surgical Consult -- We will meet with the surgeon for the second time to cover the procedure and aftermath. Yes...I chose the word "aftermath." Hopefully we'll have our questions lined up to ask again. It never fails. No matter how prepared you are, you still miss or misinterpret some of the important items as we did during the first consult. I assume this is also the time Jennifer will get to become a night light as part of the clinical trial.
- Anesthesia Consult (Check-in & Consult) -- Anybody who has had anesthesia due to surgery, childbirth, recreational use (just kidding), know that you have to talk with the anesthesiologist about complications. He will ask you to sign the waiver indicating you will not sue them if you don't wake up. Sounds like Darwinism to me. We've done it 4 times with kids -- still a hard document to sign.
- Surgery is scheduled for May 31st. ====> C-DAY -- Cut it out. I have half-a-mind (no comment from the peanut gallery) to ask the doc to put the cancerous tissue in a vial and give it to me. I have no idea why...just a thought. I doubt he'd turn it over because it can be used for research purposes and it needs to be if it will help someone down the road.
- ***Special Anniversary Message*** Happy 15th Anniversary Honey. I ordered that "Plastic Surgery" you always wanted....Oh. Not for the tongue? Dang it. Got it wrong again.
Special Thanks and Appreciation go out to:
The Academy and all the little people who voted for me. Whoops. Wrong Venue.- Everyone who is keeping us in their prayers. I'll say it again. Prayer is powerful and we appreciate it. There are others worse off than us, please pray for them too.
- Grandma and Grandpa Koch -- for helping us out with our last minute requests to help with the kids -- Two of our appointments fell on the same day as Grace and Ben's Field Days. Sorry we missed them this year, but Grandma and Grandpa filled in.
- The rest of the family (immediate and extended) -- on my side, you're too far away physically, but we have comfort knowing you're thinking of us. We're thinking of you too. Same for Jennifer's Family. Aunt Dorothy sent a beautiful Rosary from Lourdes. Thank you.
- Our Co-Workers and Employers -- Thanks for accommodating us during these recent days and last minute surprises. We hope to get back into the groove shortly.
- Our Friends -- You're doing what good friends do. Thank you.
- MD Anderson -- So far, so good. They have been very professional all the way, with an overall good experience. ssshhh. This is the only texas university related entity that I knowingly and willingly support. I hope A&M acquires them in the future. ;-)
- Our Kids -- This is a busy time of year with end of school, swim team, gym, field days, etc. We're trying to make it work and it looks like we're going to get it done. Thank you for understanding in the midst of the unknown. Now, PICK UP YOUR ROOM!!!! THIS PLACE IS A PIGSTY!!!!! HELP US OUT!!!!! Grandparents, feel free to use this.
- Jennifer -- You're going through a lot right now, but handling it beautifully. So Strong.
My usual disclaimers apply.
Sunday, May 13, 2012
Friday, May 11, 2012
Good News, Bad News
We have Good News and Bad News
For those of you who do not like my stories or my humor, the summary of our situation is located at the bottom.
For those who can tolerate my rambling, I appreciate your putting up with me. Blogging is new to me and will probably stop when this ordeal is over. However it is fun to jot down silly stuff sometimes. Please enjoy:
Jennifer went in for the CT Scan and dental consult yesterday.
- Good News: She got to and from the hospital with no issues.
- Bad News: She didn't bring her caregiver and was chastised by the staff at MD Anderson. (Side note: her caregiver asked her several times the day before if he should go with her and was rejected -- so don't harp on me). Lay off her too -- this is new to us and yesterday was an easy day so I really didn't NEED to be there.
The CT went off without a hitch. The Dental Consult also went well.
- Good News: She was cleared for surgery after meeting with the MDA dentist.
- Bad News: She didn't have 5 cavities. Wait....she DIDN'T have the 5 cavities as she was previously told by another dentist? Hmmm. We'll have to check that out later....not important right now.
Now, the results -- She received a call from the Surgeon's Assistant.
- Good News: The CT Scan came back negative -- Translation: GREAT NEWS
- Bad News: She still have to undergo surgery...otherwise it's great news that we don't have to do Chemo or radiation.
Surgery will involve several components.
- Excise of the tumor from the tongue.
- Good News: This should remove the cancer completely
- Bad News: It's Surgery on the tongue. OUCH! It's estimated that only a small portion has to be removed, but there will be rehab involved to adapt to the physical changes -- speaking, swallowing, etc.
- Good News: The Kids and I won't get a tongue lashing for a little while after this (GREAT NEWS -- Awesome, Woohoo)
- Bad News: Knowing Jennifer, it will build up and we'll suffer the consequences later.
- A skin graft will be placed by plastic surgeons to reconstruct the tongue -- Skin will be taken from the forearm and grafted to the surgical area. Synthetic skin will also be used as a form of protection and to prevent the tongue from healing together (i.e. sticking to the floor of the mouth).
- Good News: It's amazing what they can do with medicine nowadays. Since it is plastic surgery, I've made an additional comment below.
- Bad News: Hairy Tongue? Eeeww. (should she wax it?) -- and I hope it doesn't sweat..She'll have a salty taste all the time. (yes-- I pushed the envelope, see my disclaimer from the 9th)
- The Neck Dissection -- Even though the CT scan came back negative, there is still the chance that the lymphatic system could pick up the cancer, so the surgeons will remove about 40 lymph nodes and test for presence of cancer
- Good News: Once out, we'll have the knowledge one-way or the other as to whether we are CANCER FREE.
- Bad News: It's a major incision that will cross over several paths of nerves that could affect facial features, feelings, and even shoulder strength/mobility. It may also leave a scar.
We also have the opportunity to participate in a research study -- MD Anderson is a research hospital, one of the best in the country.
- Good News: She gets to shoot up with Radioactive stuff -- Instant night light for a little while.
- Bad News: No compensation -- we'll have to see if they'll take care of the regular surgery in lieu of the lack of compensation. It's worth a try.
Surgery is expected to be scheduled sometime at the end of May, with a 5-day hospital stay and an extended recovery period:
- Good News: Once it's done, it's done
- Bad News: May 31st is our 15th Anniversary -- Most likely in the hospital.
- Good News? Can I claim the "Plastic Surgery" as a gift? Isn't plastic the gift of choice at 15 years? It is an expensive one....
- Bad News: Probably not.
- Good News: She can do it
- Bad News: It may take awhile. Our annual vacation to Concan is in Mid-June and may not be attended by Jennifer. She is making me take the kids (by myself -- REAL BAD)...May need to hire a nannie to go with me to take care of the hoodlums. Whaaat? Whaaaaat? Don't look at me like that...I'm just kidding.
SUMMARY OF OUR SITUATION: For those who do not have the time, nor the patience to read through my musings -- You know who you are.
Jennifer's CT scan came back clear. She will undergo surgery to remove the tumor and about 40 lymph nodes sometime at the end of May. This will be a 4-6 hour surgery as it covers a very delicate area cosmetically and systemically. However, once completed, she should be cancer free -- no radiation, no chemo. Rehab will begin and she'll pull through it.
Thanks to everybody for their thoughts and prayers. They really do help.
Jennifer, your haircut is Awesome. HAPPY MOTHER'S DAY.
You'll pull through this with flying colors.
I Love You.
Wednesday, May 9, 2012
IGC
"I Got Cancer"
These are words you do not want to hear from anyone...especially, the love of your life, your family members, your friends. Well, I did. My world started spinning that day when Jennifer called me and said "I have cancer." This was not in our plan. However, this is something we have to deal with...and, we will.
When we first found out, we only told a few people...immediate family, impacted co-workers, a few friends. However, after talking with others who have been through similar experiences, we discovered a common theme....let people know. Not for sympathy, but for support and healing. It works. It's powerful. I want to thank everybody for their love, thoughts and prayers as we face this challenge. We are bolstered by that power.
Another powerful healing mechanism is humor. After a day or two of facing the unknown, worrying, fretting, prioritizing, we have now gotten back on track to normalcy through some humor. It first manifested itself when it was time to get the boys to bed. This is something that Jennifer normally does (because she has more patience). However the other night, when it was time, she looked at me with a sad face and said "IGC."
IGC? We're playing that game? Oh...it's on now. (read the sensitivity alert below before you pass judgement)
We are learning sign language because part of the treatment will involve oral surgery, which will impact her ability to communicate in the short term. Grace taught us the sign for "I'm sorry your turtle exploded" last weekend. Dont ask me where she got that from. Over the course of the weekend, it's evolved to "I'm sorry (Ben, Jake, Cat, Gray, Mom, Dappy, my fart) exploded." Signing is fun.
******SENSITIVITY ALERT*********
We're using humor to get by. If anyone is upset at the jokes, please get over it, because this is part of our healing process. Dang wusses.
******END OF ALERT************
*********HIPPA ALERT************
I've received consent to divulge Jennifer's information with fear of having my head knocked off or worse...some things non-surgically removed from my body.
********END OF ALERT************
We are at MD Anderson for our first consult. They are very good people and operate efficiently. The experience is a bit overwhelming and there is a lot to digest, but we're making progress.
Now...what you've been waiting for: the good and not so great news.
Physical observation has that the squamous cell carcinoma is localized to the tongue, about a T1 in size. Assuming the CT scan comes back negative, i.e. good, then the surgeon believes he can get it all through surgery...no radiation or chemo. But, being surgery, it will involve removal of a section of the tongue (no jokes yet....still sensitive). Following the surgery would be rehab to work on speaking and eating.....that's the uncertainty that troubles us.
Also, as a precaution, he'd like to perform a neck dissection in order to biopsy the lymph nodes in the head and neck, about 40 of them. This would prolong initial recovery. We are weighing the options right now. Of course, being a research hospital, we also have the option to partake in some clinical studies that involve radioactive tracers (low-energy reading light?).
All-in-all we're happy we don't have to resort to any drawn out treatments...however we're still praying and contemplatingthe side effects of the surgical procedures.
CT is tomorrow and the next consult will most likely be in a week or two.....more to come.
"I Got Cancer"
These are words you do not want to hear from anyone...especially, the love of your life, your family members, your friends. Well, I did. My world started spinning that day when Jennifer called me and said "I have cancer." This was not in our plan. However, this is something we have to deal with...and, we will.
When we first found out, we only told a few people...immediate family, impacted co-workers, a few friends. However, after talking with others who have been through similar experiences, we discovered a common theme....let people know. Not for sympathy, but for support and healing. It works. It's powerful. I want to thank everybody for their love, thoughts and prayers as we face this challenge. We are bolstered by that power.
Another powerful healing mechanism is humor. After a day or two of facing the unknown, worrying, fretting, prioritizing, we have now gotten back on track to normalcy through some humor. It first manifested itself when it was time to get the boys to bed. This is something that Jennifer normally does (because she has more patience). However the other night, when it was time, she looked at me with a sad face and said "IGC."
IGC? We're playing that game? Oh...it's on now. (read the sensitivity alert below before you pass judgement)
We are learning sign language because part of the treatment will involve oral surgery, which will impact her ability to communicate in the short term. Grace taught us the sign for "I'm sorry your turtle exploded" last weekend. Dont ask me where she got that from. Over the course of the weekend, it's evolved to "I'm sorry (Ben, Jake, Cat, Gray, Mom, Dappy, my fart) exploded." Signing is fun.
******SENSITIVITY ALERT*********
We're using humor to get by. If anyone is upset at the jokes, please get over it, because this is part of our healing process. Dang wusses.
******END OF ALERT************
*********HIPPA ALERT************
I've received consent to divulge Jennifer's information with fear of having my head knocked off or worse...some things non-surgically removed from my body.
********END OF ALERT************
We are at MD Anderson for our first consult. They are very good people and operate efficiently. The experience is a bit overwhelming and there is a lot to digest, but we're making progress.
Now...what you've been waiting for: the good and not so great news.
Physical observation has that the squamous cell carcinoma is localized to the tongue, about a T1 in size. Assuming the CT scan comes back negative, i.e. good, then the surgeon believes he can get it all through surgery...no radiation or chemo. But, being surgery, it will involve removal of a section of the tongue (no jokes yet....still sensitive). Following the surgery would be rehab to work on speaking and eating.....that's the uncertainty that troubles us.
Also, as a precaution, he'd like to perform a neck dissection in order to biopsy the lymph nodes in the head and neck, about 40 of them. This would prolong initial recovery. We are weighing the options right now. Of course, being a research hospital, we also have the option to partake in some clinical studies that involve radioactive tracers (low-energy reading light?).
All-in-all we're happy we don't have to resort to any drawn out treatments...however we're still praying and contemplatingthe side effects of the surgical procedures.
CT is tomorrow and the next consult will most likely be in a week or two.....more to come.
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