Sunday morning Steve was released from the hospital and is now back home. He completed his IV antibiotics and now has two sets of pills to take at home for another week, I believe. During his hospital days, he walked progressively further each day and read a lot on his Kindle. Terry spent much of the time with him. He says he feels pretty good and is just a little tired from the whole affair.
He told me about making the mask for his radiation therapy but I didn't quite understand. He said is didn't take long. The whole process took fifteen minutes of which ten minutes was going between locations. There was a plastic mesh with solid plastic covering over the eyes (and mouth?) and he went into a machine which formed it to his face. Then he went into a second machine for some reason which I forget. Sorry I'm not too detailed.
I'm looking forward to seeing him this next weekend and hope to have more to report then, you know, when he's FIFTY years old! Hahaha.... my baby brother :-D
Sunday, January 29, 2012
Wednesday, January 25, 2012
Ugh, Four More Days in the Hospital
Terry and Steve are a bit unhappy. Steve hates being in the hospital and this time he has to stay in for four days. His pneumonia needs two different intravenous antibiotics, one every six hours and one every twelve hours and they expect it for four days to fight the bacterial infection they think he picked up in the hospital last time. He's on oxygen and walks around pushing the IV pole and he has respiratory therapy. He doesn't feel too sick, he just has to put in his time. I asked Terry to look into getting physical therapy for him, if the doctor will agree. She was not to happy because she was not allowed to stay overnight with him. Instead, she had a quiet night at home (it was too late to pick up the boys) and went back this morning.
The good news, Steve was still able to have his radiation mask made. They were going to wheel Steve over for his appointment to the adjacent building in between his IV doses today. I haven't talked to them tonight to see how it went. I'll keep you posted when I find out.
The good news, Steve was still able to have his radiation mask made. They were going to wheel Steve over for his appointment to the adjacent building in between his IV doses today. I haven't talked to them tonight to see how it went. I'll keep you posted when I find out.
Tuesday, January 24, 2012
A Complication and Another Hospital Stay
Wouldn't it be nice if life went smoothly? You know how just getting diagnosed with a glioblastoma means the odds aren't exactly in your favor? Well, today Steve got diagnosed with pneumonia, meaning his recovery wasn't quite so smooth after all. The odds just weren't in his favor today.
Around noon today I received a phone call from Terry. She and Steve had been shopping at Home Depot for some little things for their house and Steve began to get short of breath. Terry drove Steve to the doctor's office and they sent him to the hospital emergency room at Henry Mayo. He has pneumonia. The hospital doctor was in contact with Dr. Hu to ensure good coordination of care. They were still running tests and Terry didn't know if he would be released home or not.
Six hours later, Lesley updated me on the phone from the hospital. Steve is on oxygen and the chest x-rays and CT scan show early pneumonia in both lungs. They are going to admit him overnight just to be careful and monitor him closely because of his diabetes and the glioblastoma/recent surgery. They suspect Steve was exposed to the pneumonia germ (I don't know if it's bacterial or viral) when he was in the hospital for his tumor surgery. He is receiving IV antibiotics and he is expecting respiratory therapy tonight. His food tray had just arrived when Lesley stepped out of the room to call me. Terry hopes to stay overnight with Steve again and their good friend, Wendy, will watch the boys tonight.
I guess Steve missed lunch with his work friends today and I bet they will have to reschedule his radiation therapy mask making session tomorrow. Too bad.
Around noon today I received a phone call from Terry. She and Steve had been shopping at Home Depot for some little things for their house and Steve began to get short of breath. Terry drove Steve to the doctor's office and they sent him to the hospital emergency room at Henry Mayo. He has pneumonia. The hospital doctor was in contact with Dr. Hu to ensure good coordination of care. They were still running tests and Terry didn't know if he would be released home or not.
Six hours later, Lesley updated me on the phone from the hospital. Steve is on oxygen and the chest x-rays and CT scan show early pneumonia in both lungs. They are going to admit him overnight just to be careful and monitor him closely because of his diabetes and the glioblastoma/recent surgery. They suspect Steve was exposed to the pneumonia germ (I don't know if it's bacterial or viral) when he was in the hospital for his tumor surgery. He is receiving IV antibiotics and he is expecting respiratory therapy tonight. His food tray had just arrived when Lesley stepped out of the room to call me. Terry hopes to stay overnight with Steve again and their good friend, Wendy, will watch the boys tonight.
I guess Steve missed lunch with his work friends today and I bet they will have to reschedule his radiation therapy mask making session tomorrow. Too bad.
Sunday, January 22, 2012
Recovering From Surgery and Preparing for the Next Steps
Well, Steve breezed through surgery better than anyone expected. He was home Friday after Wednesday brain surgery with all visible tumor removed (how great was that?). From what I gathered, hearing snippets from the family, Steve was only on narcotic pain medicine through Saturday as it made him feel confused and sleepy and then Tylenol was able to handle his pain. He felt better every day and had frequent visitors the following week. I understand there is no change in his speech so he manages very well with only rare missing words and certainly near enough to normal that many people wouldn't notice. When I talk to him on the phone, he sounds great. He had the whole week after surgery doctor-free so he spent time with his family and resting and went out to dinner to celebrate our sister, Lesley's birthday.
Last Tuesday, January 17th, it was back to the doctor's. First to Dr. Jethro Hu (does anyone else hear Jethro Tull music when I say that?), the neuro-oncologist at Cedars-Sinai. They talked about the next steps for Steve. There is an experimental trial where, if you qualify, your own blood is taken and made into a vaccine to fight your own tumor. This is to help keep new tumors from regrowing at the tumor site. They took Steve's blood to test for this HLA factor to see if he qualified. They talked about chemotherapy and radiation therapy and the likely schedule with and without the vaccine trial. Dr. Hu also gave Steve permission to drive his car again. He drove part of the way home that day.... the first time in a while! One step closer to normalcy! Dr. Hu discouraged Steve from going back to work until some time after the chemo and radiation treatments are completed. He also began to taper the dosage of Dexamethasone steroid. Every few days he will diminish the dose from 8mg/day down to zero. We loved the Dexamethasone in the beginning because it controlled the swelling inside the brain, but now there is no more tumor to generate swelling and so it is not needed. The side effects of a puffy face have appeared on Steve, so he is pleased to not need it any longer.
Radiation Schedule
Then they went to meet Dr. Nancy Ellerbroeck, the radiologist at Henry Mayo Hospital. She used to work at Cedars-Sinai and has the respect of the radiologists there (who referred Steve to her), but she is located much closer to Steve's house. She will be in charge of Steve's radiation therapy. The way I understand it, first they make a mould of Steve's head, called a mask. This will hold his head still and in the exact same place for each radiation session. Steve is scheduled for next Wednesday to have this mask made. Then they make a "phantom" head to test this new mask with to see if the radiation will be in the right place (mapping the brain again). That takes about another week, so Steve's radiation therapy will start the following week. He will go five days a week to Henry Mayo Hospital, near his house. The session will take about 15 minutes. He has the mask placed and lies still and is irradiated for 7-8 minutes at a time. This lasts for six weeks. The Registered Nurse, Grace, will do most of the work and Dr. Ellerbroeck will see Steve once a week. This is the maximum level of radiation safely allowed for Steve. There is no further radiation scheduled after this six weeks.
Friday, we got the results of the HLA blood test. Steve did NOT have the right kind of marker/HLA thingy to qualify for the vaccine trial. He won't be able to participate in this particular trial. Later on, if the tumor regrows (and I understand they almost always do), he may be able to enroll in other trials for recurrent tumors. We're a little disappointed, but, what can you do? His tumor or blood markers weren't the right kind so there is no choice but to continue moving forward with conventional chemo and radiation. Maybe we can "sour grapes" the situation by saying it probably wouldn't have helped anyway. Plus, with this experiment, only 2/3 of the subjects receive the live vaccine, 1/3 receive placebo, so he may not have received it at all even if he had the right blood.
Chemotherapy Schedule
So, the chemotherapy schedule will be concurrent with the radiation schedule. He will take a Temodar pill once a day, everyday, for 6 weeks. He will follow up with Dr. Hu every 2-3 weeks during this time frame. At the end of those 42 days, he will have one month off. They will do a follow up MRI during that month. Afterwards, there will be a maintenance chemotherapy schedule of 5 pills a month on and off for a year with MRIs interspersed every other month. I'm sure everything is subject to change depending upon actual findings. Stay tuned :)
On a brighter note, the new family room couch, love seat and reclining chair ordered months ago arrived yesterday. Terry likes them. The couch reclines and has a built in cup holder. I'm looking forward to seeing them.
Also, Steve went to a new family physician since they are no longer Kaiser members, a Dr. Thomas (did I get that right?) Cox, who has been Lesley's doctor for many years. Steve has lost 35 pounds since this started. Yikes! What a way to lose weight. Dr. Cox requested Steve's hospital records so he can make proper adjustment to Steve's diabetes medications. They will hear back from him in about a week with any changes to his medications. Steve went back on the treadmill as soon as the surgeon gave him permission after surgery. Steve continues eating a healthy diet with very few sweets.
(By the way, Terry says she has lost 19 pounds since Steve's diagnosis. The Stress Diet really works, but I can't recommend it.)
Last night, according to Terry, Steve awoke about 2 am with cold shivers, lasting about 10 minutes. He was confused for just a minute, probably from a dream (something about a sandwich). It's probably nothing, maybe the steroid taper, maybe Steve's fighting a cold that was going around, maybe some medication. He's been taking Tylenol PM to help sleep through the night. Sometimes we worry too much. Needless to say, Terry watches those little things and we talk about them. Steve's had no trouble today. But, if it happens again Terry will be on the phone to the doctor. Worry warts!
Next week, Steve plans to drive out to work to have lunch with his friends. I bet it feels good to plan a normal activity.
Steve's fiftieth birthday is coming up soon, the first week in February. Maybe he'll be well enough for a good party, if it doesn't last too long. What to you think?
Last Tuesday, January 17th, it was back to the doctor's. First to Dr. Jethro Hu (does anyone else hear Jethro Tull music when I say that?), the neuro-oncologist at Cedars-Sinai. They talked about the next steps for Steve. There is an experimental trial where, if you qualify, your own blood is taken and made into a vaccine to fight your own tumor. This is to help keep new tumors from regrowing at the tumor site. They took Steve's blood to test for this HLA factor to see if he qualified. They talked about chemotherapy and radiation therapy and the likely schedule with and without the vaccine trial. Dr. Hu also gave Steve permission to drive his car again. He drove part of the way home that day.... the first time in a while! One step closer to normalcy! Dr. Hu discouraged Steve from going back to work until some time after the chemo and radiation treatments are completed. He also began to taper the dosage of Dexamethasone steroid. Every few days he will diminish the dose from 8mg/day down to zero. We loved the Dexamethasone in the beginning because it controlled the swelling inside the brain, but now there is no more tumor to generate swelling and so it is not needed. The side effects of a puffy face have appeared on Steve, so he is pleased to not need it any longer.
Radiation Schedule
Then they went to meet Dr. Nancy Ellerbroeck, the radiologist at Henry Mayo Hospital. She used to work at Cedars-Sinai and has the respect of the radiologists there (who referred Steve to her), but she is located much closer to Steve's house. She will be in charge of Steve's radiation therapy. The way I understand it, first they make a mould of Steve's head, called a mask. This will hold his head still and in the exact same place for each radiation session. Steve is scheduled for next Wednesday to have this mask made. Then they make a "phantom" head to test this new mask with to see if the radiation will be in the right place (mapping the brain again). That takes about another week, so Steve's radiation therapy will start the following week. He will go five days a week to Henry Mayo Hospital, near his house. The session will take about 15 minutes. He has the mask placed and lies still and is irradiated for 7-8 minutes at a time. This lasts for six weeks. The Registered Nurse, Grace, will do most of the work and Dr. Ellerbroeck will see Steve once a week. This is the maximum level of radiation safely allowed for Steve. There is no further radiation scheduled after this six weeks.
Friday, we got the results of the HLA blood test. Steve did NOT have the right kind of marker/HLA thingy to qualify for the vaccine trial. He won't be able to participate in this particular trial. Later on, if the tumor regrows (and I understand they almost always do), he may be able to enroll in other trials for recurrent tumors. We're a little disappointed, but, what can you do? His tumor or blood markers weren't the right kind so there is no choice but to continue moving forward with conventional chemo and radiation. Maybe we can "sour grapes" the situation by saying it probably wouldn't have helped anyway. Plus, with this experiment, only 2/3 of the subjects receive the live vaccine, 1/3 receive placebo, so he may not have received it at all even if he had the right blood.
Chemotherapy Schedule
So, the chemotherapy schedule will be concurrent with the radiation schedule. He will take a Temodar pill once a day, everyday, for 6 weeks. He will follow up with Dr. Hu every 2-3 weeks during this time frame. At the end of those 42 days, he will have one month off. They will do a follow up MRI during that month. Afterwards, there will be a maintenance chemotherapy schedule of 5 pills a month on and off for a year with MRIs interspersed every other month. I'm sure everything is subject to change depending upon actual findings. Stay tuned :)
On a brighter note, the new family room couch, love seat and reclining chair ordered months ago arrived yesterday. Terry likes them. The couch reclines and has a built in cup holder. I'm looking forward to seeing them.
Also, Steve went to a new family physician since they are no longer Kaiser members, a Dr. Thomas (did I get that right?) Cox, who has been Lesley's doctor for many years. Steve has lost 35 pounds since this started. Yikes! What a way to lose weight. Dr. Cox requested Steve's hospital records so he can make proper adjustment to Steve's diabetes medications. They will hear back from him in about a week with any changes to his medications. Steve went back on the treadmill as soon as the surgeon gave him permission after surgery. Steve continues eating a healthy diet with very few sweets.
(By the way, Terry says she has lost 19 pounds since Steve's diagnosis. The Stress Diet really works, but I can't recommend it.)
Last night, according to Terry, Steve awoke about 2 am with cold shivers, lasting about 10 minutes. He was confused for just a minute, probably from a dream (something about a sandwich). It's probably nothing, maybe the steroid taper, maybe Steve's fighting a cold that was going around, maybe some medication. He's been taking Tylenol PM to help sleep through the night. Sometimes we worry too much. Needless to say, Terry watches those little things and we talk about them. Steve's had no trouble today. But, if it happens again Terry will be on the phone to the doctor. Worry warts!
Next week, Steve plans to drive out to work to have lunch with his friends. I bet it feels good to plan a normal activity.
Steve's fiftieth birthday is coming up soon, the first week in February. Maybe he'll be well enough for a good party, if it doesn't last too long. What to you think?
Friday, January 6, 2012
Already Home
Just a quick update to let you all know that Steve is home! Hard to believe that he had brain surgery on Wednesday and is home by noon on Friday. He looks really good, and is feeling pretty good. A bit of pain at the incision site, still some pesky floaters in his right eye, and a bit of brusing and soreness at the IV sites, but overall he is doing amazingly well.
He and Terry plan a quiet weekend at home, watching football, while he recuperates. He is still very tired. He has a week off from seeing any doctors, and he is pleased about that.
Thanks to everyone that have sent prayers, good wishes and positive thoughts his way, they certainly did their job!
Lesley
He and Terry plan a quiet weekend at home, watching football, while he recuperates. He is still very tired. He has a week off from seeing any doctors, and he is pleased about that.
Thanks to everyone that have sent prayers, good wishes and positive thoughts his way, they certainly did their job!
Lesley
Thursday, January 5, 2012
One Day Post Surgery
Steve was moved out of the Neuro Critical Care Unit today into a regular room. The removed all the IV lines, and he is free to eat and move around. He is however very, very tired. He did not get much sleep in the CCU (maybe 2 hours). Terry is allowed to stay in the room with him now that he is in a regular room, but it looks like he will go home tomorrow.
Dr Patil visited them this morning and said again that they got the entire tumor out. It is the best possible outcome they could have hoped for with his surgery. They will still do chemotherapy (2 months in a pill form, so he will take that at home) and radiation (as for as I know from the past discussions it will be 5 days a week for 6 weeks, possibly beginning 2-3 weeks post surgery). Cedars does have a radiologist that Steve can get his treatments from here in the Santa Clarita Valley, so he won't have to drive to West LA daily. Steve and Terry will talk to the neuro-oncolologist and the radio-oncologist at Ceaders either today or tomorrow so I will know more information soon. Exactly how they will do the radiation - we don't know yet.
As far as the vaccine program goes, the doctor wants to "put it in his back pocket" for now for two reasons: One, the removed the entire tumor, so there is very little if anything for the vaccine to destroy. And second, they are getting the best results when they use the vaccine on a recurrent tumor. So if a tumor regrows/returns or grows in a new place, they will build the vaccine at that time from the new tumor.
All this information is second hand to me from Terry, so I hope I got everything right.
Steve feels pretty good, except for the exhaustion. The "floaters" are already disappearing, and every other function seems to be working just fine. He will be really happy to get out of the hospital because they keep pressure cuffs on his legs while in bed to keep blood clots away, and he says they are uncomfortable.
I think that is it for today, Our brother Greg was with Steve and Terry most of the day, and Jessica and I visited briefly. Scott drove down tonight to bring both Steve and Terry some fresh clothes to come home in tomorrow, and because he wanted to visit with Steve. I believe that Greg is driving home to Northern California tomorrow.
Let me know if you have any questions!
Lesley
Dr Patil visited them this morning and said again that they got the entire tumor out. It is the best possible outcome they could have hoped for with his surgery. They will still do chemotherapy (2 months in a pill form, so he will take that at home) and radiation (as for as I know from the past discussions it will be 5 days a week for 6 weeks, possibly beginning 2-3 weeks post surgery). Cedars does have a radiologist that Steve can get his treatments from here in the Santa Clarita Valley, so he won't have to drive to West LA daily. Steve and Terry will talk to the neuro-oncolologist and the radio-oncologist at Ceaders either today or tomorrow so I will know more information soon. Exactly how they will do the radiation - we don't know yet.
As far as the vaccine program goes, the doctor wants to "put it in his back pocket" for now for two reasons: One, the removed the entire tumor, so there is very little if anything for the vaccine to destroy. And second, they are getting the best results when they use the vaccine on a recurrent tumor. So if a tumor regrows/returns or grows in a new place, they will build the vaccine at that time from the new tumor.
All this information is second hand to me from Terry, so I hope I got everything right.
Steve feels pretty good, except for the exhaustion. The "floaters" are already disappearing, and every other function seems to be working just fine. He will be really happy to get out of the hospital because they keep pressure cuffs on his legs while in bed to keep blood clots away, and he says they are uncomfortable.
I think that is it for today, Our brother Greg was with Steve and Terry most of the day, and Jessica and I visited briefly. Scott drove down tonight to bring both Steve and Terry some fresh clothes to come home in tomorrow, and because he wanted to visit with Steve. I believe that Greg is driving home to Northern California tomorrow.
Let me know if you have any questions!
Lesley
The Day After Surgery: Some News from California
Barbados is four hours ahead of California. We have been gone all day and I have been thinking about Steve often. I get back to our cottage and there is only a little news for me. I assume some summary of the day will be posted later, after I have gone to sleep.
This from Chrissy, via Facebook message:
Hi again,
Spoke with Terry a bit earlier.....this is what she has told me. Dr. Patil says tumor is gone. Dr. Woo will be Neuro-Oncologist. Will need to see him every few months as chemo will be done in pill form at home. Radio-Oncologist will be at Henry Mayo...closer to home. Dr. Woo or Dr. Patil (not sure which) will recommend someone. Vaccine study not to be done yet.....will be used if there is a re-occurrance as that is when it works best....and since there is no tumor....not needed yet. New prognosis.....3-5 years.....Hoping both Greg and Terry can confirm all since i was not there today....this is my understanding from the conversation. Steve may be able to go home tomorrow. Currently resting as he didn't sleep much last night. I am going to visit after i get out of work today.
Hope you are enjoying yourself!!! I will keep you posted.
Thank you Chrissy!
Terry's post on Facebook this morning:
I am looking forward to hearing more details about how Steve is feeling and how he is doing. I expect he must have a headache :)
This from Chrissy, via Facebook message:
Hi again,
Spoke with Terry a bit earlier.....this is what she has told me. Dr. Patil says tumor is gone. Dr. Woo will be Neuro-Oncologist. Will need to see him every few months as chemo will be done in pill form at home. Radio-Oncologist will be at Henry Mayo...closer to home. Dr. Woo or Dr. Patil (not sure which) will recommend someone. Vaccine study not to be done yet.....will be used if there is a re-occurrance as that is when it works best....and since there is no tumor....not needed yet. New prognosis.....3-5 years.....Hoping both Greg and Terry can confirm all since i was not there today....this is my understanding from the conversation. Steve may be able to go home tomorrow. Currently resting as he didn't sleep much last night. I am going to visit after i get out of work today.
Hope you are enjoying yourself!!! I will keep you posted.
Thank you Chrissy!
Terry's post on Facebook this morning:
This was followed by fifteen comments and 10 "Like"s wishing them well. I didn't post them for the sake of space, and because I posted similar comments in yesterday's blog.
I am looking forward to hearing more details about how Steve is feeling and how he is doing. I expect he must have a headache :)
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