We have received so much e-mail, been in so many discussions, and have had so many cards and letters it really deserves a few comments and thanks. So thank you all very much. It is really such a joy to find out how many people one has touched throughout their lives. All of you have been so generous with offers of meals, taking on workload, providing transportation, being an ear for concerns... my list could go on for a long time.
The mantle above the fireplace is loaded with cards and folders in e-mail have many letters in them. One also finds out about others who have had impacts from loved ones with cancer.
Tim really appreciates all the communication and goes back to look at them from time to time. They really do make a big difference.
Thanks again!!!
--bob
Thursday, August 31, 2006
Monday, August 28, 2006
Week One of Treatment
This really comes in two parts. Part one is getting some more diagnostics done and the insertion of the port-a-cath while part two was the administration of the first round of chemotherapy.
On Tuesday, Tim had a series of CT scans, a bone scan, a spinal tap, and a bone marrow aspirate taken. All of this to look for any possibility of spreading of the tumor cells. The short story is all of this turned out negative. The bad side is that Tim reacts poorly to spinal taps. The previous spinal tap which was used to conduct the myelogram to look at the syrinx caused him to not be able to keep any food down for a week. In the previous case, he had a conflict of instructions to lay down but keep the head elevated so as not to let the contrast medium get to the brain. He lost some spinal fluid out the hole. This makes one dehydrated and he wasn't able to do much about it. He couldn't get fluids into his system. In the week one case, he felt a lot better the day after all the tests but in retrospect, he should have stayed on his back and let the hole heal over. He started to feel nauseous and then threw up Wednesday evening through the following day of his admission to the hospital for chemo.
The bone scan involves injecting a gamma ray emitter that finds it way into the bones so that under a radiation scanner the bones literally light up. After several minutes integrating the emissions, the machine paints an image of the skeleton. They look for really bright spots which would indicate rapid bio processes which would imply cancer cells. None were found.
The CT scans are looking for high activity and a contrast medium is used. Again, none were found. They are looking for cells in the spinal fluid and bone marrow and no cancer cells were found there.
The port-a-cath also got inserted. This device provides a direct line into the jugular vein which then can be accessed via a needle poke through the skin and into the device. It is located on the upper chest and avoids having to establish IV lines each time drugs need to be administered. There is also a cream that gets applied about an hour before use that numbs the area so he doesn't even really feel the needle poke. The only bad thing is that they have to flush the system out and use heparin and saline to do that which causes a metallic taste in the mouth.
So on to part two. He got admitted on Thursday for chemo and also to make him comfortable by getting fluids pumped in and getting anti-nausea drugs.
This helped a lot and he was able to eat some while in the hospital. But, when we got home Friday night, he was back to being nauseous and essentially wasn't able to eat or drink anything for the weekend. This was pretty bleak and initially we could not really tell if the nausea was from the spinal tap or the chemo. In the end we think it was the spinal tap and so we'll wait for the next chemo admission to see what happens.
The protocol he is on includes three chemo drugs administered on weeks 1, 4, 7, and 10 with one of those drugs administered on weeks 2, 3, 5, 6, 8, and 9. This pattern then changes on week 11 if he stays in the clinical trial. One of the two additional drugs adminsitered every three weeks is the nasty one and the subject of the clinical trail. Not being on the trail, this drug continues to be administered every three weeks. We'll have to see his reaction and go from there.
The reason for the hospital admission is also to allow the introduction of massive amounts of fluid to keep the one nasty chemo drug from affecting the bladder lining. As a result, Tim has to get up every 90 minutes or so to pee and that has to be measured and tested each time. They end up looking for blood in the urine and finding none after 24 hours or so, they let him come home.
Anti-nausea drugs are still needed at this point and the ones they use now-a-days are really a seratonin blocker. The stomach says throw up, but the brain doesn't get the signal. There are a number of them and like meds for migraines one has to find the right one that works for the individual. Because we were dealing with the spinal tap issues, we're not sure at this point what drug works or not. Again, we'll find out on week 4.
--bob
On Tuesday, Tim had a series of CT scans, a bone scan, a spinal tap, and a bone marrow aspirate taken. All of this to look for any possibility of spreading of the tumor cells. The short story is all of this turned out negative. The bad side is that Tim reacts poorly to spinal taps. The previous spinal tap which was used to conduct the myelogram to look at the syrinx caused him to not be able to keep any food down for a week. In the previous case, he had a conflict of instructions to lay down but keep the head elevated so as not to let the contrast medium get to the brain. He lost some spinal fluid out the hole. This makes one dehydrated and he wasn't able to do much about it. He couldn't get fluids into his system. In the week one case, he felt a lot better the day after all the tests but in retrospect, he should have stayed on his back and let the hole heal over. He started to feel nauseous and then threw up Wednesday evening through the following day of his admission to the hospital for chemo.
The bone scan involves injecting a gamma ray emitter that finds it way into the bones so that under a radiation scanner the bones literally light up. After several minutes integrating the emissions, the machine paints an image of the skeleton. They look for really bright spots which would indicate rapid bio processes which would imply cancer cells. None were found.
The CT scans are looking for high activity and a contrast medium is used. Again, none were found. They are looking for cells in the spinal fluid and bone marrow and no cancer cells were found there.
The port-a-cath also got inserted. This device provides a direct line into the jugular vein which then can be accessed via a needle poke through the skin and into the device. It is located on the upper chest and avoids having to establish IV lines each time drugs need to be administered. There is also a cream that gets applied about an hour before use that numbs the area so he doesn't even really feel the needle poke. The only bad thing is that they have to flush the system out and use heparin and saline to do that which causes a metallic taste in the mouth.
So on to part two. He got admitted on Thursday for chemo and also to make him comfortable by getting fluids pumped in and getting anti-nausea drugs.
This helped a lot and he was able to eat some while in the hospital. But, when we got home Friday night, he was back to being nauseous and essentially wasn't able to eat or drink anything for the weekend. This was pretty bleak and initially we could not really tell if the nausea was from the spinal tap or the chemo. In the end we think it was the spinal tap and so we'll wait for the next chemo admission to see what happens.
The protocol he is on includes three chemo drugs administered on weeks 1, 4, 7, and 10 with one of those drugs administered on weeks 2, 3, 5, 6, 8, and 9. This pattern then changes on week 11 if he stays in the clinical trial. One of the two additional drugs adminsitered every three weeks is the nasty one and the subject of the clinical trail. Not being on the trail, this drug continues to be administered every three weeks. We'll have to see his reaction and go from there.
The reason for the hospital admission is also to allow the introduction of massive amounts of fluid to keep the one nasty chemo drug from affecting the bladder lining. As a result, Tim has to get up every 90 minutes or so to pee and that has to be measured and tested each time. They end up looking for blood in the urine and finding none after 24 hours or so, they let him come home.
Anti-nausea drugs are still needed at this point and the ones they use now-a-days are really a seratonin blocker. The stomach says throw up, but the brain doesn't get the signal. There are a number of them and like meds for migraines one has to find the right one that works for the individual. Because we were dealing with the spinal tap issues, we're not sure at this point what drug works or not. Again, we'll find out on week 4.
--bob
Wednesday, August 23, 2006
The syrinx diagnosis
As I pointed out earlier, in the diagnostic work associated with the tissue mass, a syrinx was discovered in the spinal cord. This was the reason for the involvement of the neurosurgeon. He ordered a series of additional MRI scans to determine the depth of the syrinx and look for one of the possible causes. The initial thought was that a chiari malformation was in play. This is a narrowing of the hole in the base of the skull by the tonsils of the cerebellum. Results of those tests showed no malformation or at least not one that qualifies. Medicine is sometimes tricky stuff and although Tim's cerebellum was in this opening it wasn't extended far enough to qualify. On the other hand, they were clearly in that hole at the base of the skull but not really a causal candidate for the syrinx.
We were told the syrinx is not a normal element of the spinal cord. It is essentially a water column in the middle of the spinal cord made up of cerebral spinal fluid. This stuff "flows" in and around the brain and spinal column and when restricted can cause the syrinx to appear. Patients usually have some symptoms associated with a syrinx but Tim had none and continues to have none.
There was one more possibility for restricted flow and that could be some issue in the spinal column. To test this, Tim had a myleogram which is to inject a contrast medium into the lower spine and watch how it flows on a flouroscope. This test also showed no cause for the syrinx. So we were left with no answer other than to check again in a year and see if the syrinx changes size. In the meantime since Tim has no symptoms and he has a "lot of room" in the spinal column for a spinal cord that is "fatter" than normal, we'll end up waiting until next summer to check the status of the syrinx again.
Good news for this part of the journey.
If something changes, then we'll have another decision about a surgical proceedure (exploratory) to look for potential restrictions near the base of the skull that can only be seen this way. MRI scans as good as they are can't completely substitute for visual inspection.
--bob
We were told the syrinx is not a normal element of the spinal cord. It is essentially a water column in the middle of the spinal cord made up of cerebral spinal fluid. This stuff "flows" in and around the brain and spinal column and when restricted can cause the syrinx to appear. Patients usually have some symptoms associated with a syrinx but Tim had none and continues to have none.
There was one more possibility for restricted flow and that could be some issue in the spinal column. To test this, Tim had a myleogram which is to inject a contrast medium into the lower spine and watch how it flows on a flouroscope. This test also showed no cause for the syrinx. So we were left with no answer other than to check again in a year and see if the syrinx changes size. In the meantime since Tim has no symptoms and he has a "lot of room" in the spinal column for a spinal cord that is "fatter" than normal, we'll end up waiting until next summer to check the status of the syrinx again.
Good news for this part of the journey.
If something changes, then we'll have another decision about a surgical proceedure (exploratory) to look for potential restrictions near the base of the skull that can only be seen this way. MRI scans as good as they are can't completely substitute for visual inspection.
--bob
Tuesday, August 22, 2006
What the heck happened?
Or, I guess the beginning of all this...
Back in May, 2006 someone in the classroom noticed a "bulge" on the left side of the back of Tim's neck. Seemed kind of odd. It was the middle of the spring soccer season so perhaps this was a muscle bruise of some sort. But he could not remember getting injured. Nothing else seemed out of place, no stiffness in the area, it wasn't hot, just a bulge.
A trip to the family medicine doc was in order but he was clueless. He prescribed a round of antibiotics on the premise that this could be a deep infection. After two weeks there was really no change. Next we were off to an ENT specialist in the group who wanted to get a CT scan of the neck done to see what we were dealing with. Results clearly showed a mass that looked like it was cystic in nature. That is, likely fluid filled. It was in-between the muscle layers of the neck and quite deep up against the skull. As part of the CT scan, a syrinx was discovered (the subject of another blog entry) in the spinal cord. That got a pediatric neurosurgeon in the mix who then got a different ENT surgeon involved.
After more scans (MRI scans since neurosurgeons like those rather than CT scans) the syrinx was clearly there and we proceeded down a path to understand the cause of that. The tissue growth which was now being called a tumor was referred to the second ENT to deal with. The next step was to do a needle biopsy and see what we were dealing with. Unfortunately since the thought was that the tumor was quite vascular the aspirate didn't really end up getting cells of the tumor. Rather it was just blood and some skin tissue. Anyway, that showed no malignancy.
Even so, the tumor had to come out. We couldn't really tell if it had been growing recently or had been there for a long time. Surgery was scheduled for a Monday morning and would involve both the ENT surgeon and neurosugeon since the tumor was quite close to the skull and spinal column.
The tumor was resected, photographed, made into slides but no quick diagnosis could be made by the pathologist. The slide set had to go to some experts and it took about two weeks for the data to come back as embryonal rhabdomyosarcoma. In the meantime, the ENT surgeon had contacted the pediatric oncologist at the MSTI in Boise and when the diagnosis of cancer came back it was one day later that we were in the oncologist's office and talking about chemotherapy and radiation treatment.
Oncologists are a funny lot. They are blunt and they have to be. Cancer is really no joke and to get the point across it was clearly stated that you will die from this if no treatment is done. However, the treatment prognosis is good and a lot depends on how the tumor is staged. A treatment plan was set up to begin the following week and that week would include more tests and the insertion of a under the skin access port for all the meds.
--bob
Back in May, 2006 someone in the classroom noticed a "bulge" on the left side of the back of Tim's neck. Seemed kind of odd. It was the middle of the spring soccer season so perhaps this was a muscle bruise of some sort. But he could not remember getting injured. Nothing else seemed out of place, no stiffness in the area, it wasn't hot, just a bulge.
A trip to the family medicine doc was in order but he was clueless. He prescribed a round of antibiotics on the premise that this could be a deep infection. After two weeks there was really no change. Next we were off to an ENT specialist in the group who wanted to get a CT scan of the neck done to see what we were dealing with. Results clearly showed a mass that looked like it was cystic in nature. That is, likely fluid filled. It was in-between the muscle layers of the neck and quite deep up against the skull. As part of the CT scan, a syrinx was discovered (the subject of another blog entry) in the spinal cord. That got a pediatric neurosurgeon in the mix who then got a different ENT surgeon involved.
After more scans (MRI scans since neurosurgeons like those rather than CT scans) the syrinx was clearly there and we proceeded down a path to understand the cause of that. The tissue growth which was now being called a tumor was referred to the second ENT to deal with. The next step was to do a needle biopsy and see what we were dealing with. Unfortunately since the thought was that the tumor was quite vascular the aspirate didn't really end up getting cells of the tumor. Rather it was just blood and some skin tissue. Anyway, that showed no malignancy.
Even so, the tumor had to come out. We couldn't really tell if it had been growing recently or had been there for a long time. Surgery was scheduled for a Monday morning and would involve both the ENT surgeon and neurosugeon since the tumor was quite close to the skull and spinal column.
The tumor was resected, photographed, made into slides but no quick diagnosis could be made by the pathologist. The slide set had to go to some experts and it took about two weeks for the data to come back as embryonal rhabdomyosarcoma. In the meantime, the ENT surgeon had contacted the pediatric oncologist at the MSTI in Boise and when the diagnosis of cancer came back it was one day later that we were in the oncologist's office and talking about chemotherapy and radiation treatment.
Oncologists are a funny lot. They are blunt and they have to be. Cancer is really no joke and to get the point across it was clearly stated that you will die from this if no treatment is done. However, the treatment prognosis is good and a lot depends on how the tumor is staged. A treatment plan was set up to begin the following week and that week would include more tests and the insertion of a under the skin access port for all the meds.
--bob
Getting Started
Starting a blog seemed like a good way to share how things were going with Tim and his journey through dealing with a cancerous tumor. We're well on the way into treatment already, a lot of the emotional intensity has already passed and many people I know are wondering what the heck is really going on.
I know at work, folks are anxious for information but want to not bother me so much. I'd like to be a lot more open and sharing but also not to spend a lot of the day telling the same story. Don't want to cheat anybody out of the information either so publishing a blog might actually achieve a lot of that.
My intent is to publish whatever makes sense and keep the conversation open. Hopefully we can all be supportive through this time, provide information, make suggestions, etc. In the end this combined with the other "technical" notes will become a record of the memory of this year.
--bob
I know at work, folks are anxious for information but want to not bother me so much. I'd like to be a lot more open and sharing but also not to spend a lot of the day telling the same story. Don't want to cheat anybody out of the information either so publishing a blog might actually achieve a lot of that.
My intent is to publish whatever makes sense and keep the conversation open. Hopefully we can all be supportive through this time, provide information, make suggestions, etc. In the end this combined with the other "technical" notes will become a record of the memory of this year.
--bob
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