Hi,
By process of elimination, the horrendous pain Denny is experiencing is definitely a result of his case of shingles. The official name is post herpetic neuralgia and the pain associated with it is about as bad as pain can get. In Denny's case the pain is all in the area of his left ear and upper jaw. He rates it as a 12 out of 10! It comes on very suddenly and is so intense it takes him to his knees. He's back on Vicadin and tonight we applied a Lidoderm patch. Between the two, the pain has subsided and he is in bed for the night. How long the pain will stay gone is anyone's guess, so I know sleep will be fragmented for both of us.
If anyone has a suggestion regarding shingles, treatment, recovery, etc., I surely would appreciate any advice you might provide. Thanks in advance!!
Love,
Carla
Monday, March 30, 2009
Friday, March 27, 2009
March 27
Hi,
It's been another week of doctor appointments, tests, and new prescriptions. After repeated visits to Den's doctors, a CT scan of his skull, and the usual weekly blood tests, we are pretty much at the same place as last week, only the pain in his left ear and the area around it is worse. In short, Denny has had a miserable week. The doctors all agree that the pain is probably from the shingles, although most of them on his face, in his ears, and on his head have disappeared.
Today we met with Dr. Meena and Dr. Howard at the same time. Both advised that Denny should start on a prescription for nerve pain and stop the Tylenol and Vicadin because his liver function tests are always out of whack on those drugs. Plus, because he had developed thrush in his mouth from all of the antibiotics and steroids, he had to take an anti-fungal med for that, which also had a negative impact on the liver enzymes. Hopefully, this new drug will slowly diminish the pain
over the next few days and keep it at bay for as long as it takes to go away. Until things are better the next round of chemo is on hold.
Both doctors emphasized the positive, which is that the tumor remains unchanged.
That really is good news. Neither doctor expects Denny to be selected for the Cleveland Clinic trial because the tumor is stable, but the doctors there will have all of the records should we ever have to go there. Steve (Howard) personally knows all of the radiation oncologists at CC, so there certainly is comfort in that.
There's not much else for news. Like everyone else, we are hoping that the snow that is predicted for the weekend will find its way elsewhere. I'm ready to trade shoveling for scooping up geese poop from our front yard -- I'm really sick of winter and I'm ready for the yard work. In all honesty, though, I didn't have to do all of the shoveling this year because the seniors from school came over and took care of that most of the time. What great kids. As Denny has always said, "Only at Xavier....."
Thanks for checking in. Have a good weekend!
Love,
Carla
It's been another week of doctor appointments, tests, and new prescriptions. After repeated visits to Den's doctors, a CT scan of his skull, and the usual weekly blood tests, we are pretty much at the same place as last week, only the pain in his left ear and the area around it is worse. In short, Denny has had a miserable week. The doctors all agree that the pain is probably from the shingles, although most of them on his face, in his ears, and on his head have disappeared.
Today we met with Dr. Meena and Dr. Howard at the same time. Both advised that Denny should start on a prescription for nerve pain and stop the Tylenol and Vicadin because his liver function tests are always out of whack on those drugs. Plus, because he had developed thrush in his mouth from all of the antibiotics and steroids, he had to take an anti-fungal med for that, which also had a negative impact on the liver enzymes. Hopefully, this new drug will slowly diminish the pain
over the next few days and keep it at bay for as long as it takes to go away. Until things are better the next round of chemo is on hold.
Both doctors emphasized the positive, which is that the tumor remains unchanged.
That really is good news. Neither doctor expects Denny to be selected for the Cleveland Clinic trial because the tumor is stable, but the doctors there will have all of the records should we ever have to go there. Steve (Howard) personally knows all of the radiation oncologists at CC, so there certainly is comfort in that.
There's not much else for news. Like everyone else, we are hoping that the snow that is predicted for the weekend will find its way elsewhere. I'm ready to trade shoveling for scooping up geese poop from our front yard -- I'm really sick of winter and I'm ready for the yard work. In all honesty, though, I didn't have to do all of the shoveling this year because the seniors from school came over and took care of that most of the time. What great kids. As Denny has always said, "Only at Xavier....."
Thanks for checking in. Have a good weekend!
Love,
Carla
Monday, March 23, 2009
March 23
Hi!
Today was another learning experience (at least for me!) We went back to Dr. Meyer, the ear specialist, who confirmed what we had suspected: the ear infection wasn't completely cleared up and there was fluid behind the eardrum. That explains, in part, the earache Denny was still experiencing.
I watched on a screen as the doctor removed the infection/debris and then, after numbing the ear, he made a small incision in Den's eardrum, suctioned out the fluid, and inserted a tube (like toddlers have put in) to facilitate future drainage. It really was fascinating to watch. And what a relief for Denny! Everything sounds clear to him for the first time in a long time. It's probably my imagination, but I believe his balance is even better.
Then it was on to physical therapy, where Den's getting back on track after these past couple of weeks. Let's hope that we are back on a forward course.
Thanks for your prayers, notes, and calls. That's what keeps Den going!
Love,
Carla
Today was another learning experience (at least for me!) We went back to Dr. Meyer, the ear specialist, who confirmed what we had suspected: the ear infection wasn't completely cleared up and there was fluid behind the eardrum. That explains, in part, the earache Denny was still experiencing.
I watched on a screen as the doctor removed the infection/debris and then, after numbing the ear, he made a small incision in Den's eardrum, suctioned out the fluid, and inserted a tube (like toddlers have put in) to facilitate future drainage. It really was fascinating to watch. And what a relief for Denny! Everything sounds clear to him for the first time in a long time. It's probably my imagination, but I believe his balance is even better.
Then it was on to physical therapy, where Den's getting back on track after these past couple of weeks. Let's hope that we are back on a forward course.
Thanks for your prayers, notes, and calls. That's what keeps Den going!
Love,
Carla
Friday, March 20, 2009
March 20
Hi,
Well, there's never a dull day in O-Team Land. Today we started out at the dentist because Denny's been having an on-again-off-again toothache that we attributed to the sinus infection, shingles, etc., since it was on the left side. I called the dentist yesterday, who came in on his day off to take care of Den. It turned out to be decay under one of his crowns. The pain is gone and all is well, but we're wondering what oddball thing will happen next.
Then it was on to the oncologist, who decided to delay this round of chemotherapy because of all of the other medicines Denny is taking. A result of the potent antibiotics is the development of thrush in his mouth. So now we have a new prescription for that to prevent it from spreading to the esophagus, which would make eating and drinking very difficult. The downside of taking that medicine, which are anti-fungal pills, is that it can have a very negative affect on the liver. Hopefully, he will only have to be on it for a week, as the antibiotics end this weekend.
All in all, Den is on the mend. His ear is healing, the sinus infection seems to be gone, the shingles are slowly going away, and the swelling in his leg is going down a little each day. As he is able to do more, the increased fatigue should diminish and then he can get back to developing his strength again. Other good news is that his daily dose of steroids is being reduced, so we are happy about that.
We were so sad to see our team lose in their first game at State, but are very proud of these young men and all they have accomplished. This is surely not the worst thing they've experienced together, but I know they must be hurting. I also know that all of them are bound for success because they are decent, caring, and dedicated to achievement. We love you guys!!
I hope this finds everyone enjoying the beginning of this long awaited spring. Have a great weekend!
Love,
Carla
Well, there's never a dull day in O-Team Land. Today we started out at the dentist because Denny's been having an on-again-off-again toothache that we attributed to the sinus infection, shingles, etc., since it was on the left side. I called the dentist yesterday, who came in on his day off to take care of Den. It turned out to be decay under one of his crowns. The pain is gone and all is well, but we're wondering what oddball thing will happen next.
Then it was on to the oncologist, who decided to delay this round of chemotherapy because of all of the other medicines Denny is taking. A result of the potent antibiotics is the development of thrush in his mouth. So now we have a new prescription for that to prevent it from spreading to the esophagus, which would make eating and drinking very difficult. The downside of taking that medicine, which are anti-fungal pills, is that it can have a very negative affect on the liver. Hopefully, he will only have to be on it for a week, as the antibiotics end this weekend.
All in all, Den is on the mend. His ear is healing, the sinus infection seems to be gone, the shingles are slowly going away, and the swelling in his leg is going down a little each day. As he is able to do more, the increased fatigue should diminish and then he can get back to developing his strength again. Other good news is that his daily dose of steroids is being reduced, so we are happy about that.
We were so sad to see our team lose in their first game at State, but are very proud of these young men and all they have accomplished. This is surely not the worst thing they've experienced together, but I know they must be hurting. I also know that all of them are bound for success because they are decent, caring, and dedicated to achievement. We love you guys!!
I hope this finds everyone enjoying the beginning of this long awaited spring. Have a great weekend!
Love,
Carla
Monday, March 16, 2009
March 16
Hi,
Just a quick update to let you know that things are better. This morning I called our doctor who was able to get Denny in right away to see an ear specialist. I won't give you the graphic details (Shannon's instructions!) but he was able to eliminate the outer ear infection and prescribed some more powerful antiobiotic ear drops. He told us that he thinks this is probably all a result of the radiation Den was given last summer. Once the inner ear infection is cleared up, hopefully by next Monday, we will see him again and Denny will have a CT scan to see if there is a necessity of putting a tube in that ear. That, and/or, regular visits to our new best friend, Dr. Meyer, should prevent this from happening again. I sure wish other things were as easy to fix!!!
Shingles are another story. Those are healing and there is no residual pain, but we learned that a person can get shingles more than once. We are just thankful that this time it was caught the very day they started to appear. That spared Den a ton of pain.
For Denny, the very worst part of all of this is not being able to go to the State basketball tournament in Madison. But we'll be there in spirit and watching the game on TV. I think we will try to make a little party out of it for Papa and his boys!
Thanks for your thoughts and continuing prayers,
Carla
Just a quick update to let you know that things are better. This morning I called our doctor who was able to get Denny in right away to see an ear specialist. I won't give you the graphic details (Shannon's instructions!) but he was able to eliminate the outer ear infection and prescribed some more powerful antiobiotic ear drops. He told us that he thinks this is probably all a result of the radiation Den was given last summer. Once the inner ear infection is cleared up, hopefully by next Monday, we will see him again and Denny will have a CT scan to see if there is a necessity of putting a tube in that ear. That, and/or, regular visits to our new best friend, Dr. Meyer, should prevent this from happening again. I sure wish other things were as easy to fix!!!
Shingles are another story. Those are healing and there is no residual pain, but we learned that a person can get shingles more than once. We are just thankful that this time it was caught the very day they started to appear. That spared Den a ton of pain.
For Denny, the very worst part of all of this is not being able to go to the State basketball tournament in Madison. But we'll be there in spirit and watching the game on TV. I think we will try to make a little party out of it for Papa and his boys!
Thanks for your thoughts and continuing prayers,
Carla
Friday, March 13, 2009
March 13
Hi,
Thanks to all of you who got in touch with us after the last blog entry. The new procedure at the Cleveland Clinic is a bright ray of hope, that's for sure. At this point all of Den's records have been forwarded to them. All of our primary doctors (Yazbak, Meena, and Howard) are very supportive of the clinical trial, but I think we all know that Denny being chosen as a participant is a long shot. That is due, in part, to the fact that the condition of his tumor is considered stable at this time. Doctors involved with the trial are looking for patients with either recurrent or progressive situations. But at least they will have all of the info on Den should his condition change or when this becomes available after government approval.
We saw the oncologists twice this week; things were rolling along just a little too smoothly, I guess. Denny called me at work on Tuesday, saying that he wanted to go to the hospital because he was experiencing unbearable pain. I quickly called the doctor, closed up my office, and got him to the doctor as soon as possible. Dr. Meena wasn't in, so we saw her colleague, who immediately ordered an MRI. All of the pain was in Denny's left ear, and that's the side of the thalamus where the tumor is located. My imagination went into overdrive but when the afternoon was over we left the hospital knowing that the tumor is the same as before and Den has a severe ear/sinus infection. We picked up lots of new prescriptions and came home. After two miserable days and nights with no relief (Den rated the pain at 9.5 out of 10--the worst pain he's ever had in his life, he said,)we returned to see Dr. Meena yesterday. She changed the antibiotic and also discovered, as she closely observed the rash on the left side of his face and in his beard, that he has shingles. So now we are armed with another batch of prescriptions and are hoping to see improvement by tomorrow. The pain subsided significantly this afternoon when his ear drum ruptured from the pressure within. It's good that both Shannon (as a baby) and I (as an adult) experienced the same thing because seeing blood seeping out of someone's ear is pretty freaky.
It's been a long couple of days and nights, so Denny's been sleeping for hours and I'm heading for bed. We both wish we could go to the sectional final in Green Bay tomorrow, but we'll be here cheering for our friend, Coach Tom Neises, and a very special group of young men as they take on Seymour. Go Hawks!!
Have a wonderful weekend,
Carla
Thanks to all of you who got in touch with us after the last blog entry. The new procedure at the Cleveland Clinic is a bright ray of hope, that's for sure. At this point all of Den's records have been forwarded to them. All of our primary doctors (Yazbak, Meena, and Howard) are very supportive of the clinical trial, but I think we all know that Denny being chosen as a participant is a long shot. That is due, in part, to the fact that the condition of his tumor is considered stable at this time. Doctors involved with the trial are looking for patients with either recurrent or progressive situations. But at least they will have all of the info on Den should his condition change or when this becomes available after government approval.
We saw the oncologists twice this week; things were rolling along just a little too smoothly, I guess. Denny called me at work on Tuesday, saying that he wanted to go to the hospital because he was experiencing unbearable pain. I quickly called the doctor, closed up my office, and got him to the doctor as soon as possible. Dr. Meena wasn't in, so we saw her colleague, who immediately ordered an MRI. All of the pain was in Denny's left ear, and that's the side of the thalamus where the tumor is located. My imagination went into overdrive but when the afternoon was over we left the hospital knowing that the tumor is the same as before and Den has a severe ear/sinus infection. We picked up lots of new prescriptions and came home. After two miserable days and nights with no relief (Den rated the pain at 9.5 out of 10--the worst pain he's ever had in his life, he said,)we returned to see Dr. Meena yesterday. She changed the antibiotic and also discovered, as she closely observed the rash on the left side of his face and in his beard, that he has shingles. So now we are armed with another batch of prescriptions and are hoping to see improvement by tomorrow. The pain subsided significantly this afternoon when his ear drum ruptured from the pressure within. It's good that both Shannon (as a baby) and I (as an adult) experienced the same thing because seeing blood seeping out of someone's ear is pretty freaky.
It's been a long couple of days and nights, so Denny's been sleeping for hours and I'm heading for bed. We both wish we could go to the sectional final in Green Bay tomorrow, but we'll be here cheering for our friend, Coach Tom Neises, and a very special group of young men as they take on Seymour. Go Hawks!!
Have a wonderful weekend,
Carla
Saturday, March 7, 2009
March 7
Happy Saturday morning!
This weekend will be as close to What Life Was Like Before as we've had. Last night we went to Shannon and Doug's for supper and a movie and then we stopped by Chip and Jenn's for a short visit. So, we got our grandbaby "fix", as all were in rare form.
It was a great way to end the work week.
Today we will head to Madison to see our own baby. Dave has been working there for two years but he usually makes the trip home to see us. We know that a car ride even that distance will require a couple of stops along the way so that Den can keep the circulation going in his legs. Those blood clots are surely taking a long time to dissolve, but without taking blood thinners, I guess that's what we can expect.
There is some news to report and I am cautiously optimistic in doing so. I'll try to make it brief, but that may be difficult. Here goes.
About three weeks ago we were made aware of a procedure being done on patients who have inoperable stage 4 glioblastomas, which is what Denny is being treated for despite the difference in the Mayo diagnosis. This procedure is being done at the Cleveland Clinic in Ohio. Since that time I have contacted all of the people listed in the various web links and made all of Denny's doctors here aware of this new procedure, which is in the trial phase with expectations of being approved yet this year.
In the past, the only treatment for tumors like Den's was stereotactic radio surgery, which is a radiation mega boost. There's no "surgery" as we think of it involved. The hope there is that by hitting the tumor with radiation like an atom bomb, the tumor would be be shattered and the DNA within would be scrambled with hopes that those cells could not reproduce as cancer. But this would be a risky procedure given the location of this tumor, which is in his thalamus.
This new, groundbreaking procedure, called AutoLITT, uses a laser probe which is placed inside the tumor (somewhat like when the biopsy was done) and heat up to 160 degrees literally cooks the tumor. Heat destroys cancer cells--they die on the spot.
The patient is under anesthesia and is having an MRI as the doctor does the surgery, so it's done in real time. When it's over, the patient is, literally, cancer free.
There is no damage to healthy surrounding tissue and the recovery time is amazingly short.
Cleveland Clinic is only accepting nine more patients for the trial, so our chances of having Den chosen are slim, mainly because one of the criteria to be included is that the cancer is recurrent or non responsive to current treatment. Den's tumor has not diminished in size, but appears to be dead in the middle. However, they have asked for the doctors' reports as well as the most recent MRIs. My assumption is that we will hear from them within the next few weeks. That is a start and even if Den isn't chosen for the clinical trial, we know this will be available when things are approved.
Maybe only people who have experienced any kind of shock will understand what I am about to say, but when this all started (June 11, to be exact), I had some difficulty praying, although it seemed like that was all I was doing. I felt so guilty praying for a miracle because that seemed so selfish, yet it was really what I wanted. I kept apologizing to God for my self-centeredness and kept praying for acceptance of what is and hope for what might be. God granted me those indulgences and over the months I've gotten past the panic mode. What I know now, is that the prayers for hope and the miracles lie within the hands of those medical researchers and surgeons who will use these new techniques and their incredible skills to literally cure the inoperable cancers like Denny's.
So, please keep praying for Denny and all that might be. You have our eternal gratitude for all you have done for us thus far. As soon as we have news, you'll be the first to know!
Love,
Carla
This weekend will be as close to What Life Was Like Before as we've had. Last night we went to Shannon and Doug's for supper and a movie and then we stopped by Chip and Jenn's for a short visit. So, we got our grandbaby "fix", as all were in rare form.
It was a great way to end the work week.
Today we will head to Madison to see our own baby. Dave has been working there for two years but he usually makes the trip home to see us. We know that a car ride even that distance will require a couple of stops along the way so that Den can keep the circulation going in his legs. Those blood clots are surely taking a long time to dissolve, but without taking blood thinners, I guess that's what we can expect.
There is some news to report and I am cautiously optimistic in doing so. I'll try to make it brief, but that may be difficult. Here goes.
About three weeks ago we were made aware of a procedure being done on patients who have inoperable stage 4 glioblastomas, which is what Denny is being treated for despite the difference in the Mayo diagnosis. This procedure is being done at the Cleveland Clinic in Ohio. Since that time I have contacted all of the people listed in the various web links and made all of Denny's doctors here aware of this new procedure, which is in the trial phase with expectations of being approved yet this year.
In the past, the only treatment for tumors like Den's was stereotactic radio surgery, which is a radiation mega boost. There's no "surgery" as we think of it involved. The hope there is that by hitting the tumor with radiation like an atom bomb, the tumor would be be shattered and the DNA within would be scrambled with hopes that those cells could not reproduce as cancer. But this would be a risky procedure given the location of this tumor, which is in his thalamus.
This new, groundbreaking procedure, called AutoLITT, uses a laser probe which is placed inside the tumor (somewhat like when the biopsy was done) and heat up to 160 degrees literally cooks the tumor. Heat destroys cancer cells--they die on the spot.
The patient is under anesthesia and is having an MRI as the doctor does the surgery, so it's done in real time. When it's over, the patient is, literally, cancer free.
There is no damage to healthy surrounding tissue and the recovery time is amazingly short.
Cleveland Clinic is only accepting nine more patients for the trial, so our chances of having Den chosen are slim, mainly because one of the criteria to be included is that the cancer is recurrent or non responsive to current treatment. Den's tumor has not diminished in size, but appears to be dead in the middle. However, they have asked for the doctors' reports as well as the most recent MRIs. My assumption is that we will hear from them within the next few weeks. That is a start and even if Den isn't chosen for the clinical trial, we know this will be available when things are approved.
Maybe only people who have experienced any kind of shock will understand what I am about to say, but when this all started (June 11, to be exact), I had some difficulty praying, although it seemed like that was all I was doing. I felt so guilty praying for a miracle because that seemed so selfish, yet it was really what I wanted. I kept apologizing to God for my self-centeredness and kept praying for acceptance of what is and hope for what might be. God granted me those indulgences and over the months I've gotten past the panic mode. What I know now, is that the prayers for hope and the miracles lie within the hands of those medical researchers and surgeons who will use these new techniques and their incredible skills to literally cure the inoperable cancers like Denny's.
So, please keep praying for Denny and all that might be. You have our eternal gratitude for all you have done for us thus far. As soon as we have news, you'll be the first to know!
Love,
Carla
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