Happy Birthday Dennis!
Hey, we'll get together and celebrate later, OK?
Larry
January 25, 2011
January 23, 2011
Hi everyone.
This is Dennis' brother Larry again.
It has been awhile and some of Dennis' friends have let me know it is time for an update - so I will do my best even though there is not a lot of new information to share.
I never realized how hard the cancer treatment was for the patient, or for his family and his friends. Dennis can do little but endure. Family and friends can do even less. I know this has been particularly tough for his wife, his kids and mom.
Dennis spends most of this time in his recliner chair now. Besides going to treatments, sleeping is his primary activity. His trips to the bathroom for his regular mouth rinses are made with short tiny steps.
His voice is almost completely gone now so I can't really report much about how HE feels about all of this as we can't chat. His doctor said that this is temporary and his voice will return. Last week they found a small infection in his throat and that is being treated with antibiotics. Because of some bad coughing recently, they x-rayed him to make sure he isn't coming down with pneumonia. Results are expected next week but assumed to be good as no calls were received. His medical team seems to be on top of things, always alert and reacting promptly to any potential issue.
Dennis still goes in for daily hydration. More specifically, he is hooked up to a clear plastic bag suspended on a hook above his head, just like those used for a blood transfusion. The bag holds a liter of water to which they blend in the elixir of the day. Currently this is a bit of pepcid to help his stomach and esophagus, some magnesium and potassium to make up for losses caused by the radiation, and a dose of zofran anti-nausea medication. The water falls from the bag with a slow drip, drip, a drop at a time into a tube and travels directly into his blood stream. When watching this almost hypnotic dripping, it seems it will never end but two hours later it is over. Dennis sleeps through most of this process.
This is Dennis' brother Larry again.
It has been awhile and some of Dennis' friends have let me know it is time for an update - so I will do my best even though there is not a lot of new information to share.
I never realized how hard the cancer treatment was for the patient, or for his family and his friends. Dennis can do little but endure. Family and friends can do even less. I know this has been particularly tough for his wife, his kids and mom.
Dennis spends most of this time in his recliner chair now. Besides going to treatments, sleeping is his primary activity. His trips to the bathroom for his regular mouth rinses are made with short tiny steps.
His voice is almost completely gone now so I can't really report much about how HE feels about all of this as we can't chat. His doctor said that this is temporary and his voice will return. Last week they found a small infection in his throat and that is being treated with antibiotics. Because of some bad coughing recently, they x-rayed him to make sure he isn't coming down with pneumonia. Results are expected next week but assumed to be good as no calls were received. His medical team seems to be on top of things, always alert and reacting promptly to any potential issue.
Dennis still goes in for daily hydration. More specifically, he is hooked up to a clear plastic bag suspended on a hook above his head, just like those used for a blood transfusion. The bag holds a liter of water to which they blend in the elixir of the day. Currently this is a bit of pepcid to help his stomach and esophagus, some magnesium and potassium to make up for losses caused by the radiation, and a dose of zofran anti-nausea medication. The water falls from the bag with a slow drip, drip, a drop at a time into a tube and travels directly into his blood stream. When watching this almost hypnotic dripping, it seems it will never end but two hours later it is over. Dennis sleeps through most of this process.
Some key dates for you data cruncher types like me.
- His final chemo treatment will be on February 3.
- Next week, radiation treatment #28, will be his last broad area treatment. The remaining radiation treatments focus solely on the site of the original tumor.
- His final radiation treatment, #39, is scheduled for February 10.
Dennis is taking a real beating now. This period has been tough on his wife and his mom but that is how the treatment works. He suffers a lot but the cancer suffers more. It dies.
January 11, 2011
Some further comments
Larry here again. I probably don't have to tell you this, but Dennis would be writing if he was up to it now, but he isn't. I should clarify this further to say that I do not believe there is anything to be alarmed about. He is just pretty, hmmm, well I think that he is just plain tired right now. He simply says he feels so weak.
As I mentioned, Thursday is a big chemo day and that's going to further slow him down for a few days, but afterwards I hope that he will be back writing to you.
When I spoke to him, I asked about his hair. He said it's mostly gone but a nice layer of peach fuzz remains. His eyebrows and eyelashes are holding well but he has lost his nose hair. And he hasn't had to shave for about three weeks....
Not needing to shave has turned out to be a good thing as his skin has become really sensitive. Dennis explained that the radiation treatments have left the skin of his cheeks and throat looking like they had a "bad day at the beach." In actual fact, he is quite solar sensitive now, so he must dash from shelter to shelter when he has to go out. Dennis occasionally gets knots in his muscles which he believes are due to dehydration so, as I mentioned in the previous post, he works hard to keep properly hydrated.
Talking hurts and leaves his throat feeling raw, particularly around the site of the original cancer, in the base of the tongue area. His saliva glands have been deeply impacted by the treatments, so that explains the mouth washes and rinses he does continuously throughout the day.
I think the saliva provides a really good example of how important something we normally ignore can be. Skipping right past its main function of helping to breakdown food to prepare it for swallowing and digestion, saliva does a lot of other things. The mouth is a warm, dark, moist place that it is a perfect environment for bad things like germs and oral yeasts to grow. Saliva breaks these down and rinses them away. It neutralizes acids that attack the teeth, gums, and esophagus. It keeps the mouth and throat areas moist so they don't dry, crack and get infected. This moistness is also very important to our ability to talk. The radiation, particularly where Dennis receives it, interferes with all these functions. Numerous times a day he has to manually try to make up for this with washes and rinses. Just listening to Dennis talk about his efforts in response, I have become much more appreciative of some of these little miracles that occur within that I hadn't even noticed before. Now, when I become aware of saliva in my mouth, I feel fortunate.
One of the biggest things that bothers him is periods of short term memory loss. He will check his work email and think he should act on something immediately, start to type and then doze off. Later he will awaken and know there was something he wanted to do but not remember what it was. Now that really bugs him. Dennis is definitely a person with an orientation to action.
In summary, Dennis is actually quite busy. Each day has a whole list of mandatory activities to do, and there are always additional demands arising-- another test, a consultation and so forth. With the fatigue associated with these treatments, he is working hard each day just to stay with the program.
The good news is that the doctors are pleased with his progress. And this week he will be half way through his radiation treatments. I believe all the sleep and even the short term memory loss are part of the whole healing process, so we just need to be patient at this time.
On one hand, I suspect there will be a time in the future when people look back at these chemo and radiation treatments with the same horror as we look back at the crude amputations of medieval times. On the other hand, I am deeply grateful that they are available to my brother now because, though brutal, they do actually work. I fully expect that we will see Dennis back to his family and friends, back to work, and back to his ham radio this year.
As I mentioned, Thursday is a big chemo day and that's going to further slow him down for a few days, but afterwards I hope that he will be back writing to you.
When I spoke to him, I asked about his hair. He said it's mostly gone but a nice layer of peach fuzz remains. His eyebrows and eyelashes are holding well but he has lost his nose hair. And he hasn't had to shave for about three weeks....
Not needing to shave has turned out to be a good thing as his skin has become really sensitive. Dennis explained that the radiation treatments have left the skin of his cheeks and throat looking like they had a "bad day at the beach." In actual fact, he is quite solar sensitive now, so he must dash from shelter to shelter when he has to go out. Dennis occasionally gets knots in his muscles which he believes are due to dehydration so, as I mentioned in the previous post, he works hard to keep properly hydrated.
Talking hurts and leaves his throat feeling raw, particularly around the site of the original cancer, in the base of the tongue area. His saliva glands have been deeply impacted by the treatments, so that explains the mouth washes and rinses he does continuously throughout the day.
I think the saliva provides a really good example of how important something we normally ignore can be. Skipping right past its main function of helping to breakdown food to prepare it for swallowing and digestion, saliva does a lot of other things. The mouth is a warm, dark, moist place that it is a perfect environment for bad things like germs and oral yeasts to grow. Saliva breaks these down and rinses them away. It neutralizes acids that attack the teeth, gums, and esophagus. It keeps the mouth and throat areas moist so they don't dry, crack and get infected. This moistness is also very important to our ability to talk. The radiation, particularly where Dennis receives it, interferes with all these functions. Numerous times a day he has to manually try to make up for this with washes and rinses. Just listening to Dennis talk about his efforts in response, I have become much more appreciative of some of these little miracles that occur within that I hadn't even noticed before. Now, when I become aware of saliva in my mouth, I feel fortunate.
One of the biggest things that bothers him is periods of short term memory loss. He will check his work email and think he should act on something immediately, start to type and then doze off. Later he will awaken and know there was something he wanted to do but not remember what it was. Now that really bugs him. Dennis is definitely a person with an orientation to action.
In summary, Dennis is actually quite busy. Each day has a whole list of mandatory activities to do, and there are always additional demands arising-- another test, a consultation and so forth. With the fatigue associated with these treatments, he is working hard each day just to stay with the program.
The good news is that the doctors are pleased with his progress. And this week he will be half way through his radiation treatments. I believe all the sleep and even the short term memory loss are part of the whole healing process, so we just need to be patient at this time.
On one hand, I suspect there will be a time in the future when people look back at these chemo and radiation treatments with the same horror as we look back at the crude amputations of medieval times. On the other hand, I am deeply grateful that they are available to my brother now because, though brutal, they do actually work. I fully expect that we will see Dennis back to his family and friends, back to work, and back to his ham radio this year.
January 10, 2011
A Typical Day
Hello! I should first introduce myself. I'm Larry, Dennis' brother. I spoke to him on the phone yesterday. He asked me to apoligize to everyone about falling behind on the posts and to provide an update for him. There seems to be much to share so I will do this in two posts I think. Today, I will try to describe his typical day.
- 4:00 am - Awakens and has a can of food, which goes in through the gastrostomy tube in his abdomen. He has lost a lot of weight but it has stabilized, as long as he takes nutrition on a very regular schedule. Afterwards, he tries to get back to sleep again.
- 6:00 am - Gets up and does his morning ablutions. A particularly important part of this is a lengthly session of mouth washes and rinsings. With his saliva glands almost out of commission, this is particularly important, both for comfort and hygiene.
- 6:45 am - Heads off for Hoag Memorial Hospital in Newport Beach for his daily radiation session. Lieska drives each day.
- 7:30 am - Appointment begins with putting the mask on and getting locked in place. Next comes aiming the equipment, followed by a taking a CAT scan which requires 2 or 3 minutes. Evaluating the CAT scan to ensure everything is properly set up takes another 4 or 5 minutes, and finally comes the radiation, which itself last about 6 minutes.
- When finally released from the machine and the mask, they head home again where he has another can of food through the G-tube.
- 9:00 am - They are off again. Next is a trip to the doctor's office for hydration. Dennis gets hooked-up for a liter of water via the Port-A-Cath point in his chest. They have begin to add some supplemental magnesium and potossium as both get depleted by the radiation treatment. During this period Dennis brings along his eyecover and earplugs and usually is able to sleep about an hour and a half out of this two hour procedure.
- When they return, Dennis is pretty well exhausted for the day. Lieska changes and heads off for for work at about 1:30 pm.
- And then for the most part Dennis sleeps, awakes for brief periods to add a can of food, do some mouth washes and rinses, and is back to sleep.
Tomorrow I will add some additional subjective comments that Dennis shared with me.
December 31, 2010
Radiation Treatment Process Details
These three photos show some of the radiation equipment used to nuke me each day now. There are two technicians involved in the process. The procedure goes like this:
1. I have to be there at the Radiation portion of the cancer center at the hospital at 7:15A each week day. By this time, I have already sedated myself with meds. I am not in a stupor but significantly relaxed...and about to lose a lot of my memory of the next 2 hours or so. There is one patient before me. One of the techs comes to get me as soon as that patient is done with his fun for the morning.
2. I enter the radiation room and go get my special teeth guards and tongue hold-down devices from a storage area and position them in my mouth. No talking after this...more grunts and growls only.
3. I remove my shirt. The other patents put on one of those stupid hospital smocks with their butt showing. I have done all of those I am going to wear since all this started so I have told them to deal with it and let me go without a covering. Besides, for me with my phobia issues, the cold room helps keep me from imploding during the treatment.
4. They assist me lay down on the movable horizontal portion of the radiation machine. We have formed a special headrest that was formed to my head shape so that my head does not roll around. It also slightly elevates my head...a good thing with the phobia issues. Once my head is in position, a pillow is placed under my knees to slightly elevate the legs at that point.
5. Then the fun begins. A special tight fitting mask was earlier formed to perfectly fit the outline of my head and upper chest. The technicians get it now and fit it over me. It takes a minute for me to move my head around so that it is in the right position so that the mask can be pressed down on me properly. The mask fits right up against my skin; not with the small air space they suggested might be there when first discussing this nightmare months ago....
6. Now that I am in the mask properly while it is held down on me by the tech, he or she then uses the numerous locking screw downs that firmly lock the mask to the horizontal surface I am laying on. As you can see in the photos, I do have openings for my eyes. I can slightly flex the mask by moving my chin if I need to swallow...which at this point is becoming more and more difficult as my throat reacts to the radiation I have already received. The tech now observes if a number of narrow beam lights projecting from the ceiling are hitting special marks made on he mask....sometimes they tattoo the marks on the patient but I "negotiated" that out of my Disney package....
7. The techs leave the room and go to the control room. The surface holding me is lifted a bit and then it moves me into the radiation machine....we refer to it as the TOMO machine.
8. A CAT Scan is then made taking about 3 minutes. Yes, a CAT Scan five days a week for 39 sessions.
9. I am then taken back out of the machine while the technicians use the CAT Scan to make absolutely certain that my head is in exactly the right position to match the radiation beam firing pattern programmed for me. One tech comes out of the control room stands beside me and reads various readings off the TOMO and casually speaks to me (secretly praying I will not pick this moment to have a panic attack) while the other tech is working to make the final Go or No Go decision. The time to do this varies each day but rarely tmore than 5 minutes or so elapse...thankfully.
10. Once they decide to go ahead, the tech tells me that decision and leaves the room. I am then again moved back inside the machine and the radiation begins. I should mention that there is always a lot of noise inside this room, lots of air conditioning, etc. While I am inside the TOMO, I also have a lot of different noises going on from virtually all directions going around my body. The radiation beams are fired from all sorts of angles to hit the many many spots targeted to kill the cancer. The radiation takes just under 6 minutes while feeling like 15. I now know to recognize that certain sound that signals me that the radiation is shutting down and the exist is about to occur. I do keep my eyes closed most of the time in the TOMO but do occasionally open them...probably the craziness in me to see if doing so will make me blow up into a full on panic attack. So far, no.
11. After I am out, one of the techs rather quickly unscrews my mask and lowers the movable surface to a point where I can ease off. I then remove my mouth guard, wash all the pieces and put them away ready for the next day.
I have worked out an agreement with the radiation center that makes sure that everyone dealing with me knows about my extraordinarily acute phobia issues. Also, after a couple of incidents where I was told stuff during treatment that I later had absolutely no memory of, everyone knows that nothing is said to me that is important unless it is written down and pinned to Johnny's shirt for his mommy to read - you get the idea.
We leave the radiation center at this point and go home where I pour a can of "food" into my stomach feed tube.
Then back into the car and off to Doc Q's office where Nurse Mary weighs me in and then takes me to the infusion room to give me a liter of saline solution and a anti acid through my chest port. That hydration goes immediately into my blood stream.
During the weekends when Doc Q's office is closed, I report back to the hospital to receive the hydration. I get the hydration 7 days a week. While a lot of trouble, the specialist promise it will make the next many weeks of radiation go easier on me. That's all I needed to hear to agree to do it each day.
1. I have to be there at the Radiation portion of the cancer center at the hospital at 7:15A each week day. By this time, I have already sedated myself with meds. I am not in a stupor but significantly relaxed...and about to lose a lot of my memory of the next 2 hours or so. There is one patient before me. One of the techs comes to get me as soon as that patient is done with his fun for the morning.
2. I enter the radiation room and go get my special teeth guards and tongue hold-down devices from a storage area and position them in my mouth. No talking after this...more grunts and growls only.
3. I remove my shirt. The other patents put on one of those stupid hospital smocks with their butt showing. I have done all of those I am going to wear since all this started so I have told them to deal with it and let me go without a covering. Besides, for me with my phobia issues, the cold room helps keep me from imploding during the treatment.
4. They assist me lay down on the movable horizontal portion of the radiation machine. We have formed a special headrest that was formed to my head shape so that my head does not roll around. It also slightly elevates my head...a good thing with the phobia issues. Once my head is in position, a pillow is placed under my knees to slightly elevate the legs at that point.
5. Then the fun begins. A special tight fitting mask was earlier formed to perfectly fit the outline of my head and upper chest. The technicians get it now and fit it over me. It takes a minute for me to move my head around so that it is in the right position so that the mask can be pressed down on me properly. The mask fits right up against my skin; not with the small air space they suggested might be there when first discussing this nightmare months ago....
6. Now that I am in the mask properly while it is held down on me by the tech, he or she then uses the numerous locking screw downs that firmly lock the mask to the horizontal surface I am laying on. As you can see in the photos, I do have openings for my eyes. I can slightly flex the mask by moving my chin if I need to swallow...which at this point is becoming more and more difficult as my throat reacts to the radiation I have already received. The tech now observes if a number of narrow beam lights projecting from the ceiling are hitting special marks made on he mask....sometimes they tattoo the marks on the patient but I "negotiated" that out of my Disney package....
7. The techs leave the room and go to the control room. The surface holding me is lifted a bit and then it moves me into the radiation machine....we refer to it as the TOMO machine.
8. A CAT Scan is then made taking about 3 minutes. Yes, a CAT Scan five days a week for 39 sessions.
9. I am then taken back out of the machine while the technicians use the CAT Scan to make absolutely certain that my head is in exactly the right position to match the radiation beam firing pattern programmed for me. One tech comes out of the control room stands beside me and reads various readings off the TOMO and casually speaks to me (secretly praying I will not pick this moment to have a panic attack) while the other tech is working to make the final Go or No Go decision. The time to do this varies each day but rarely tmore than 5 minutes or so elapse...thankfully.
10. Once they decide to go ahead, the tech tells me that decision and leaves the room. I am then again moved back inside the machine and the radiation begins. I should mention that there is always a lot of noise inside this room, lots of air conditioning, etc. While I am inside the TOMO, I also have a lot of different noises going on from virtually all directions going around my body. The radiation beams are fired from all sorts of angles to hit the many many spots targeted to kill the cancer. The radiation takes just under 6 minutes while feeling like 15. I now know to recognize that certain sound that signals me that the radiation is shutting down and the exist is about to occur. I do keep my eyes closed most of the time in the TOMO but do occasionally open them...probably the craziness in me to see if doing so will make me blow up into a full on panic attack. So far, no.
11. After I am out, one of the techs rather quickly unscrews my mask and lowers the movable surface to a point where I can ease off. I then remove my mouth guard, wash all the pieces and put them away ready for the next day.
I have worked out an agreement with the radiation center that makes sure that everyone dealing with me knows about my extraordinarily acute phobia issues. Also, after a couple of incidents where I was told stuff during treatment that I later had absolutely no memory of, everyone knows that nothing is said to me that is important unless it is written down and pinned to Johnny's shirt for his mommy to read - you get the idea.
We leave the radiation center at this point and go home where I pour a can of "food" into my stomach feed tube.
Then back into the car and off to Doc Q's office where Nurse Mary weighs me in and then takes me to the infusion room to give me a liter of saline solution and a anti acid through my chest port. That hydration goes immediately into my blood stream.
During the weekends when Doc Q's office is closed, I report back to the hospital to receive the hydration. I get the hydration 7 days a week. While a lot of trouble, the specialist promise it will make the next many weeks of radiation go easier on me. That's all I needed to hear to agree to do it each day.
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