Hi All,
I took Dad to his last radiology appointment today. We saw a doctor briefly, who told him that he WILL lose his hair, or at least some of it. She spoke about the possibility of what they call radio-surgery, which is a more targeted radiation to the brain tumors. If they did this, it wouldn't be until after the MRI on Oct. 30th, and only if they end up treating the lung cancer in some fashion. In addition, the doctor has reduced his steroid meds.
I don't think we have talked about his weight on the blog - he started all of this on 9/4/09 at 162, and today was 146.4. Although this is not good, he was as low as 145.3 on 9/21, so.....
His mood was matter of fact, and he did talk about his situation & dying, and that everyone has to go sometime........Says there is no point being angry, and where one might ask "why me?" he said "why not me"........We talked about how - if all goes well - everyone will have to experience the loss of their parents........How no one wants to, or should have to live with the loss of a child..........and unfortunately that our cousin is currently having to deal with that heartbreaking loss .......I agreed, but told him that that doesn't mean that it doesn't still suck.......We talked about the only way for any of us to avoid this, is to isolate ourselves from anyone we might care about, and obviously, that is no way to live life.......He thinks Mom is doing better..........Says there is nothing that he feels he needs or wants to do, and is enjoying sitting out on his patio reading.........Went to the club house on his scooter yesterday, and enjoyed that, but doesn't want to go when he knows there will be a big crowd there. As far as the weight, he says that he would be fine with 1/2 the amount he is eating, but is making himself eat all that Mom puts in front of him.
Hope that keeps you all updated. Keep him in your prayers....
Pat
Monday, September 28, 2009
Tuesday, September 22, 2009
Tuesday, September 22
Hi everyone.
I picked Nate up from school and went to visit mom and dad today. Dad was at radiation with Theresa when we arrived, but they got home soon after. (Mom was asleep so Nate and I stayed on the patio.)
Dad and mom both seemed in good spirits; we started telling old road trip stories and Nate enjoyed it immensely.
John Flanagan stopped by while I was there for coffee. John Flanagan has since reported via text that Dad has gained 2 lbs, which is great news. And I thought Dad looked good today. He had some color and seemed to be a little more upbeat than over the weekend.
Friday, September 18, 2009
Sunday visit
Hi All,
Both your parents seemed in good spirits when we got there and even as we left, we talked about general stuff, the past 2 weeks of Dr's. appts., Joe's soccer teams, my family a bit, my aunt Pam who had a breast removed due to breast cancer and part of her lower left lung due to cancer and now has gone into her right lung (not sure what is going on there still), they brought up some friends that they have recently conversed with regarding their own experiences with cancer/radiation/chemo etc... your dads voice sounds abit more horse ( ? spelling) and I guess the fact that he wasn't holding down much food. We bought some Sweet N Low that your mom requested (she mentioned that your dad only drinks about half the cup of coffee and then she ends up tossing out the rest)... I made some cookies and brought those as well, a little comfort food even if he can't eat much I thought it might be nice for them both!
Your dad mentioned that his legs feel very heavy and hard to move around... and that in the morning it is hard to get going, but once he is shaved and showered he feels better...
He mentioned that he has been walking around the grounds abit.... and that all seems like it is good for him....He dozed off a few times towards the end of our visit, but said as we were leaving he was going to watch a bit of TV with your mom....
One scary thing/sad thing, not sure how to look at it... was that your dad brought up the possibility of not doing any radiation/treatments cause he was saying what if it's not worth going through... if I'm going to die anyway... (sorry... crying right now) John basically looked at him straight in the eyes and said "Dad", " you have to do this part if not for you for mom!"
John said at least start these radiation treatments and see how it all goes, let's take this day to day and see how it goes for you and for mom and make adjustments/decisions as they have to be made"
I know (or feel) that in your dads mind right now he is just definitely not sure what to think or do and feels possibly that this is all for nothing but I think it is good for him to look at it as that this is not just for him...
I thought it kinda made your dad buck up a bit and he seemed to agree with John....
Anyway, when we left, as I said, they seemed ok, and I think were looking forward to the appt. today...(insert today- John told me the news about possibly 1-3 months and I am just so sad!)( I agree in the not telling your parents (right now?) of the time frame as I too agree in keeping their spirits as high as possible- and doing the Summers End BBQ is a good start on getting together possibly weekly?)(John/we also told Johnnie and Taylor yesterday due to Johnnie wanting to leave to school this weekend and thought they needed to know now... both Johnnie and Taylor have been told not to say anything to any cousins unless told otherwise and know the little cousins are not to know at all that that is being left to their own parents to tell)
(Sorry... crying again).... You all (and I ) have been so blessed to have a father like you have (and mother) and I know that what I feel for your dad is in no comparison in what all of you feel... I just keep praying that whatever plans God has for your dad on when he wants to take him up to heaven that your dad never suffers to much however long he has...
Your dad in his 5'7 stature has always seemed like such a bigger man to me cause of who he is, has been and will always be to me and I know all of you! He is a man of strength, character, charisma, charm, respect, adventure, and love ( You know the Sean Connery type ) (as i smile) and I can't tell you in words how blessed I am to have him in my life! (as well as my husband, your mom and All of you!
I hope I have not or do not overstep any boundaries in what I say or do in regards to all that is going on, but whatever I do, it is cause I love your dad and mom and all of you! So, please let me know how to help and what to do if you need to!
This road we are all traveling on right now is going to be a long one and sometimes seem never ending... I hope we can all travel together and help each other along the way!God please guide us all through this journey and give us all strength, courage and comfort for the days ahead, Amen...
LOVE YOU ALL!
RONDA
Both your parents seemed in good spirits when we got there and even as we left, we talked about general stuff, the past 2 weeks of Dr's. appts., Joe's soccer teams, my family a bit, my aunt Pam who had a breast removed due to breast cancer and part of her lower left lung due to cancer and now has gone into her right lung (not sure what is going on there still), they brought up some friends that they have recently conversed with regarding their own experiences with cancer/radiation/chemo etc... your dads voice sounds abit more horse ( ? spelling) and I guess the fact that he wasn't holding down much food. We bought some Sweet N Low that your mom requested (she mentioned that your dad only drinks about half the cup of coffee and then she ends up tossing out the rest)... I made some cookies and brought those as well, a little comfort food even if he can't eat much I thought it might be nice for them both!
Your dad mentioned that his legs feel very heavy and hard to move around... and that in the morning it is hard to get going, but once he is shaved and showered he feels better...
He mentioned that he has been walking around the grounds abit.... and that all seems like it is good for him....He dozed off a few times towards the end of our visit, but said as we were leaving he was going to watch a bit of TV with your mom....
One scary thing/sad thing, not sure how to look at it... was that your dad brought up the possibility of not doing any radiation/treatments cause he was saying what if it's not worth going through... if I'm going to die anyway... (sorry... crying right now) John basically looked at him straight in the eyes and said "Dad", " you have to do this part if not for you for mom!"
John said at least start these radiation treatments and see how it all goes, let's take this day to day and see how it goes for you and for mom and make adjustments/decisions as they have to be made"
I know (or feel) that in your dads mind right now he is just definitely not sure what to think or do and feels possibly that this is all for nothing but I think it is good for him to look at it as that this is not just for him...
I thought it kinda made your dad buck up a bit and he seemed to agree with John....
Anyway, when we left, as I said, they seemed ok, and I think were looking forward to the appt. today...(insert today- John told me the news about possibly 1-3 months and I am just so sad!)( I agree in the not telling your parents (right now?) of the time frame as I too agree in keeping their spirits as high as possible- and doing the Summers End BBQ is a good start on getting together possibly weekly?)(John/we also told Johnnie and Taylor yesterday due to Johnnie wanting to leave to school this weekend and thought they needed to know now... both Johnnie and Taylor have been told not to say anything to any cousins unless told otherwise and know the little cousins are not to know at all that that is being left to their own parents to tell)
(Sorry... crying again).... You all (and I ) have been so blessed to have a father like you have (and mother) and I know that what I feel for your dad is in no comparison in what all of you feel... I just keep praying that whatever plans God has for your dad on when he wants to take him up to heaven that your dad never suffers to much however long he has...
Your dad in his 5'7 stature has always seemed like such a bigger man to me cause of who he is, has been and will always be to me and I know all of you! He is a man of strength, character, charisma, charm, respect, adventure, and love ( You know the Sean Connery type ) (as i smile) and I can't tell you in words how blessed I am to have him in my life! (as well as my husband, your mom and All of you!
I hope I have not or do not overstep any boundaries in what I say or do in regards to all that is going on, but whatever I do, it is cause I love your dad and mom and all of you! So, please let me know how to help and what to do if you need to!
This road we are all traveling on right now is going to be a long one and sometimes seem never ending... I hope we can all travel together and help each other along the way!God please guide us all through this journey and give us all strength, courage and comfort for the days ahead, Amen...
LOVE YOU ALL!
RONDA
Sunday, September 13, 2009
Bone Scan, etc.
Hi Again,
I believe that Dad, and Mom too, feel best on the days that there are things to do, like appointments to get to, and when people visit, since it breaks up the monotony. When I was there on Saturday, Maureen called and spoke to both Mom and Dad, and then to me. I know that they both were glad she called. Friday was definitely the worst day, as far as their moods, but today there was some worry, since Dad was up most of the night getting sick. It started just after dinner, and I guess ended at around 4:00am. He said that he thought it was his acid reflux and caused by the chicken he had for dinner, but that has never lasted like this. Usually he says that he throws up once and is good to go.... Also, I could see the doubt and worry in Mom's eyes.
I picked them up at 10 am for his 10:30 body scan appt, and once we got going, they were both better. Dad brought a bucket along in case he got sick, but did not have to use it. For the scan, they injected him with a radioactive isotope, and sent him home, only to return again, at 1:00pm. He was afraid that he would not be able to drink enough of the water required, but was able to choke down around 4 glasses, along with a small amount of milk, and keep it down. We returned to Kaiser at 1pm and he was seen right away. We didn't even make it to the waiting room. The scan lasted for about 40 minutes, and we were home just after 2pm. We were told that the results would be in by Wed or Thurs at the latest.
As I believe all of you know, I was able to move up the radiology oncology appt to 9:00am tomorrow - Monday, so that is next on the agenda. I will pick them up at 7:30am, and Anne is planning on meeting us there, for a second pair of ears. Other than being sick during the night, the only other symptom he seems to have right now is that he still feels a bit numb - his arms and legs. I think this is what he was feeling once he had the pulsation feeling in his arm, and I guess it has continued. He is going around and around in his head about all the cancer stories he has heard, and is hearing about, as is Mom. He was really interested in talking to a neighbor of his, who he knew has cancer. We went and saw her on Friday, and she shared her experience. Mom is just realizing the reality of the stories of Aunt May and Mary O'Donnell, and how there was very little time once they started with their own symptoms that lead to the doctors finding cancer in the brain. But, she is also holding out hope she finds in other stories of people lasting much longer. I think they are both looking forward to tomorrow, and getting started on radiation therapy. Maureen also shared her radiation therapy experience with me. She had it every day for 6 weeks, and felt ok until close to the end. She feels that she was trying to do too much, and it caught up to her. I have read that it can make you tired, and this is what she experienced. So, Dad may or may not experience this, and if he does, it will be important to rest. Maureen was also able to tell me what she used on her skin to protect it as best you can. She used aloe vera - which Dad and I were both told about from the conversation with his neighbor, and "Aquaphor" which is something you can find in the baby section of any drug store, or even grocery store. I found this at Von's yesterday, and have already given it to Dad. I plan on going to Whole Foods for a real good quality of Aloe Vera tonight or tomorrow.
In addition, from a call I got from Raquel, it was suggested that if we get a time frame for Dad, meaning an estimate of time left, we do not tell Dad. This is something I ran by Mom, and she agreed. Maureen said that this is also the choice they made with Aunt May. Whenever Aunt May asked, they were evasive. A "Date" might also be something we choose to not tell Mom as well, or perhaps exaggerate?? Another thought is that if the Oncologist says that other than radiation, they are not recomending any other treatment, Anne and I were wondering if there was some sort of "placebo" that could be offered, so Dad believes he is fighting it. Just a thought. Raquel's mom received chemo for her cancer, and after 2 months Raquel was told they could not continue because her mom's cell counts were not stable enough. Raquel explained to the doctor that her mom gained a lot of hope from these treatments - that she was fighting it, so it was decided that they continue with the appointments, but there was no chemo in the iv! Sounds like a pretty neat story.
I believe John and Ronda are over at Mom and Dad's as I right this, so perhaps they will have more info on their mood, etc. later tonight. I will blog again after tomorrow's appointment.
Pat
I believe that Dad, and Mom too, feel best on the days that there are things to do, like appointments to get to, and when people visit, since it breaks up the monotony. When I was there on Saturday, Maureen called and spoke to both Mom and Dad, and then to me. I know that they both were glad she called. Friday was definitely the worst day, as far as their moods, but today there was some worry, since Dad was up most of the night getting sick. It started just after dinner, and I guess ended at around 4:00am. He said that he thought it was his acid reflux and caused by the chicken he had for dinner, but that has never lasted like this. Usually he says that he throws up once and is good to go.... Also, I could see the doubt and worry in Mom's eyes.
I picked them up at 10 am for his 10:30 body scan appt, and once we got going, they were both better. Dad brought a bucket along in case he got sick, but did not have to use it. For the scan, they injected him with a radioactive isotope, and sent him home, only to return again, at 1:00pm. He was afraid that he would not be able to drink enough of the water required, but was able to choke down around 4 glasses, along with a small amount of milk, and keep it down. We returned to Kaiser at 1pm and he was seen right away. We didn't even make it to the waiting room. The scan lasted for about 40 minutes, and we were home just after 2pm. We were told that the results would be in by Wed or Thurs at the latest.
As I believe all of you know, I was able to move up the radiology oncology appt to 9:00am tomorrow - Monday, so that is next on the agenda. I will pick them up at 7:30am, and Anne is planning on meeting us there, for a second pair of ears. Other than being sick during the night, the only other symptom he seems to have right now is that he still feels a bit numb - his arms and legs. I think this is what he was feeling once he had the pulsation feeling in his arm, and I guess it has continued. He is going around and around in his head about all the cancer stories he has heard, and is hearing about, as is Mom. He was really interested in talking to a neighbor of his, who he knew has cancer. We went and saw her on Friday, and she shared her experience. Mom is just realizing the reality of the stories of Aunt May and Mary O'Donnell, and how there was very little time once they started with their own symptoms that lead to the doctors finding cancer in the brain. But, she is also holding out hope she finds in other stories of people lasting much longer. I think they are both looking forward to tomorrow, and getting started on radiation therapy. Maureen also shared her radiation therapy experience with me. She had it every day for 6 weeks, and felt ok until close to the end. She feels that she was trying to do too much, and it caught up to her. I have read that it can make you tired, and this is what she experienced. So, Dad may or may not experience this, and if he does, it will be important to rest. Maureen was also able to tell me what she used on her skin to protect it as best you can. She used aloe vera - which Dad and I were both told about from the conversation with his neighbor, and "Aquaphor" which is something you can find in the baby section of any drug store, or even grocery store. I found this at Von's yesterday, and have already given it to Dad. I plan on going to Whole Foods for a real good quality of Aloe Vera tonight or tomorrow.
In addition, from a call I got from Raquel, it was suggested that if we get a time frame for Dad, meaning an estimate of time left, we do not tell Dad. This is something I ran by Mom, and she agreed. Maureen said that this is also the choice they made with Aunt May. Whenever Aunt May asked, they were evasive. A "Date" might also be something we choose to not tell Mom as well, or perhaps exaggerate?? Another thought is that if the Oncologist says that other than radiation, they are not recomending any other treatment, Anne and I were wondering if there was some sort of "placebo" that could be offered, so Dad believes he is fighting it. Just a thought. Raquel's mom received chemo for her cancer, and after 2 months Raquel was told they could not continue because her mom's cell counts were not stable enough. Raquel explained to the doctor that her mom gained a lot of hope from these treatments - that she was fighting it, so it was decided that they continue with the appointments, but there was no chemo in the iv! Sounds like a pretty neat story.
I believe John and Ronda are over at Mom and Dad's as I right this, so perhaps they will have more info on their mood, etc. later tonight. I will blog again after tomorrow's appointment.
Pat
Thursday, September 10, 2009
The News
Hi Everyone,
Theresa took dad today to get a chest scan and an abdominal scan, and all went fine. Theresa may blog about this, but she said that Mom and Dad were in ok spirits.
I received a call from a Dr. Woo, since Dr. Chaise - who he called Dr. Chi (with the i being long). He confirmed it was cancer and said we would be hearing from the radiation oncology dept. Theresa and I went to Mom and Dad's to tell them the news. They took it pretty well, as I think we were all expecting it. I then got on the phone and was able to get a direct phone number to the rad. oncology dept - 323-783-2841. Dad now has an appointment at 2:00 pm on Wed., 9/16 - Jack & Drew's birthday. It will last about 1 hour and they will explain things, give him a brief exam, and answer questions. Assuming all is a go, they will then start to schedule radiation treatments. I assume that this is when we will find out how many treatments, etc. This appointment is at 4950 Sunset Blvd. I told Mom and Dad that I will take them, although Theresa offered as well. I don't know if anyone else wants to go? I would like to go, but also don't want to monopolize these things either. I am sure all of us going would be a bit much. So, unless some of you want to go, I will plan on it.
In addition, Dad has a bone scan scheduled on Sunday at 10:30. This is a two part appointment. At 10:30 he will be given an injection, and then sent home until around 1:00 pm. He then goes back for the 2nd part, which will take about 30 to 45 minutes. I will take him at 10:30 as planned, and take him back at 1:00, too. I know John and Anne are out of town, and I also know that Joe's teams have games that day, so no worries.
I also talked to Dad again about just taking it as it comes,, and otherwise, go about his life. This has obviously been with him for a while, and a week or two ago, he was doing just that. He and Mom were both in agreement and seem to be hanging in there, although I am sure it is tough at times, as it is with all of us. Mom even talked about going down to the beach here and there - maybe take a book and sit on a bench and read - and the both seemed interested in going back to Kincade's for happy hour. So, no time like the present! Theresa and I talked about trying to schedule something like "Kincades", but perhaps under the pretense of Anne's birthday. When we do these things, we just have to go with it, and not worry if a few of us can't make it.
Also, I forgot to tell Dad about the "boxing" match here after they left on Monday. Dad will certainly enjoy that story, so someone remember to tell him. I will also upload the video I took and show him/them.
Love You All!
Pat
Theresa took dad today to get a chest scan and an abdominal scan, and all went fine. Theresa may blog about this, but she said that Mom and Dad were in ok spirits.
I received a call from a Dr. Woo, since Dr. Chaise - who he called Dr. Chi (with the i being long). He confirmed it was cancer and said we would be hearing from the radiation oncology dept. Theresa and I went to Mom and Dad's to tell them the news. They took it pretty well, as I think we were all expecting it. I then got on the phone and was able to get a direct phone number to the rad. oncology dept - 323-783-2841. Dad now has an appointment at 2:00 pm on Wed., 9/16 - Jack & Drew's birthday. It will last about 1 hour and they will explain things, give him a brief exam, and answer questions. Assuming all is a go, they will then start to schedule radiation treatments. I assume that this is when we will find out how many treatments, etc. This appointment is at 4950 Sunset Blvd. I told Mom and Dad that I will take them, although Theresa offered as well. I don't know if anyone else wants to go? I would like to go, but also don't want to monopolize these things either. I am sure all of us going would be a bit much. So, unless some of you want to go, I will plan on it.
In addition, Dad has a bone scan scheduled on Sunday at 10:30. This is a two part appointment. At 10:30 he will be given an injection, and then sent home until around 1:00 pm. He then goes back for the 2nd part, which will take about 30 to 45 minutes. I will take him at 10:30 as planned, and take him back at 1:00, too. I know John and Anne are out of town, and I also know that Joe's teams have games that day, so no worries.
I also talked to Dad again about just taking it as it comes,, and otherwise, go about his life. This has obviously been with him for a while, and a week or two ago, he was doing just that. He and Mom were both in agreement and seem to be hanging in there, although I am sure it is tough at times, as it is with all of us. Mom even talked about going down to the beach here and there - maybe take a book and sit on a bench and read - and the both seemed interested in going back to Kincade's for happy hour. So, no time like the present! Theresa and I talked about trying to schedule something like "Kincades", but perhaps under the pretense of Anne's birthday. When we do these things, we just have to go with it, and not worry if a few of us can't make it.
Also, I forgot to tell Dad about the "boxing" match here after they left on Monday. Dad will certainly enjoy that story, so someone remember to tell him. I will also upload the video I took and show him/them.
Love You All!
Pat
Tuesday, September 8, 2009
Biopsy
Thanks for all the info Pat. And John and Pat, THANK YOU. I am sure you didn't realize this would be an all-day affair but it sounds like we're lucky it all got taken care of.
Dr Kwan sounds like a nice guy and obviously a man of taste! I look forward to meeting him.
Sorry I can't help with anything in the next week. Nate, JY and I leave early Thursday and arrive home on Sunday at around noon. I will check in when we arrive; if timing is right we will swing by to see mom and dad before we head to Monrovia.
We / I don't have any plans after this trip; I hope I can be of more use in the coming months.
xoxoxo
Anne
Biopsy
Hi All,
Dad had his biopsy done by Dr. Kwan. (He happened to be in the emergency/hospital with his wife, when Dad was in. Kaiser didn't want to schedule the biopsy for today because Dr. Kwan was by himself, so they wanted it to wait until Tues. Dr Kwan insisted on today, because he felt like he knew us thinks we are a cool family! I guess he saw/heard us all weekend while being at his wife's bedside. She has something wrong with her colon, and the specialist doesn't know what it is - says it looks like the measles inside her? Anyway, obviously a very nice man! He also thought a lot of Dad) He said that Dad did great, and that got 5 samples from him, and feels like they are all good ones. There is a danger of the lung collapsing, but Dad seems to be fine. The x-rayed his chest after the procedure, and all looked ok there, too. If he experiences shortness of breath or pain, he is to call 911.
While we were there, Mom got a call from Kaiser. Dad is now scheduled for two scans on Thursday at 11:30 - a chest scan and an abdominal scan, and is scheduled for a bone scan on Sunday at 10:30. Theresa will take Dad on Thursday, and I will probably take him on Sunday. Mom offered to take him on her own, but I told her that one of us should always take him. He fell this morning with John. The floors are non-slippery, and with the way he walks, he catches his foot and trips. In the future we should always get him a wheel chair.
In addition, keep in mind that even if he is going in for a test and they tell him not to eat or drink, he needs to take his blood pressure medicine. We didn't know this, and his blood pressure was really high this morning. This may, in part be what delayed the test today, although Dr. Kwan said it was also because he was so busy.
I got him home about 5:30 and he said he was feeling fine. We tested his blood sugar level and it read 125.
Anne is correct in that we should hear something by Thursday. If you remember, Dr Chaise is hoping to get a preliminary report on Wed, and if cancer is confirmed, she will then try to get the radiation treatments scheduled. I don't know how that will occur. It may be that Mom and Dad just get a phone call to set up the radiation appointments. We will have to wait and see.
Pat
Dad had his biopsy done by Dr. Kwan. (He happened to be in the emergency/hospital with his wife, when Dad was in. Kaiser didn't want to schedule the biopsy for today because Dr. Kwan was by himself, so they wanted it to wait until Tues. Dr Kwan insisted on today, because he felt like he knew us thinks we are a cool family! I guess he saw/heard us all weekend while being at his wife's bedside. She has something wrong with her colon, and the specialist doesn't know what it is - says it looks like the measles inside her? Anyway, obviously a very nice man! He also thought a lot of Dad) He said that Dad did great, and that got 5 samples from him, and feels like they are all good ones. There is a danger of the lung collapsing, but Dad seems to be fine. The x-rayed his chest after the procedure, and all looked ok there, too. If he experiences shortness of breath or pain, he is to call 911.
While we were there, Mom got a call from Kaiser. Dad is now scheduled for two scans on Thursday at 11:30 - a chest scan and an abdominal scan, and is scheduled for a bone scan on Sunday at 10:30. Theresa will take Dad on Thursday, and I will probably take him on Sunday. Mom offered to take him on her own, but I told her that one of us should always take him. He fell this morning with John. The floors are non-slippery, and with the way he walks, he catches his foot and trips. In the future we should always get him a wheel chair.
In addition, keep in mind that even if he is going in for a test and they tell him not to eat or drink, he needs to take his blood pressure medicine. We didn't know this, and his blood pressure was really high this morning. This may, in part be what delayed the test today, although Dr. Kwan said it was also because he was so busy.
I got him home about 5:30 and he said he was feeling fine. We tested his blood sugar level and it read 125.
Anne is correct in that we should hear something by Thursday. If you remember, Dr Chaise is hoping to get a preliminary report on Wed, and if cancer is confirmed, she will then try to get the radiation treatments scheduled. I don't know how that will occur. It may be that Mom and Dad just get a phone call to set up the radiation appointments. We will have to wait and see.
Pat
Tuesday, September 8
John just transferred dad duty to Pat at around noon.
Per a text message from Pat 10 minutes ago, the biopsy is done and the radiologist said Dad did fine. Dad will be held for about 4 hours for observation.
I am not sure when results are expected, but if memory serves it will be a couple of days.
anne
Sunday, September 6, 2009
Regarding Monday, Steptember 7 2009
BBQ at Pat's tomorrow at 1:00. Menu to be determined. Pat will let us know later.
Doesn't matter if you need to come late or leave early. Mom and dad were up for the idea so we want to take as much advantage when they want to do something.
See you tomorrow,
xoxo
Anne
Sunday visit from Theresa
Well, went by mom and dads this morning around 11 AM. John arrived soon after. Guess mom was having a hard time doing the blood testing. Because I wasn't there last night, we just waited for John to get there, and show us. It went fine, and his blood sugar level was 86. So, dad took his pills and then ate his breakfast. Think he will try and get up a big earlier, just so it's easier to get the 4 blood tests in the day and to be able to take all of his pills.
John left after a while, and I stayed until after 2 PM, when they would do the next blood test. Dad will soon be driving mom crazy, going over everything over, and over, and over. But all in all, it was a good visit. At 2 PM, mom went ahead and did the blood test. Everything went fine, except that the machine that gives us the number, had already turned off by the time mom was ready to prick dads finger. So, instead of doing it the way the directions read, mom will get the lancer tool ready first, then put the strip in the machine, and do the test. His second reading was 92. So, I left just after that, mom was making his lunch.
John left after a while, and I stayed until after 2 PM, when they would do the next blood test. Dad will soon be driving mom crazy, going over everything over, and over, and over. But all in all, it was a good visit. At 2 PM, mom went ahead and did the blood test. Everything went fine, except that the machine that gives us the number, had already turned off by the time mom was ready to prick dads finger. So, instead of doing it the way the directions read, mom will get the lancer tool ready first, then put the strip in the machine, and do the test. His second reading was 92. So, I left just after that, mom was making his lunch.
Theresa
Phone numbers
Pat: Great information. Either your memory is a helluva lot better than mine or your notes were more than the one notebook I saw you with.
I thought it would be helpful to post the phone numbers you have of the involved doctors and also the number for Kaiser in the event someone has to call with a bad blood sugar number. We should all put the numbers in our cell phones.
Good advice on one day at a time. It's going to be tempting to do the if this / then that game (one of dad's favorites) but it think it will be wise for us all not to get ahead of ourselves.
We will no sooner get used to a situation and it will change, so staying lose will be the key to us all getting through this.
I know that I will be taking the least of the brunt since I am so far away. But JY will be available if need be. Since I can't run by mom and dad's every day for an hour or so I can certainly spend a day at a time or whatever. Just know that I'll do whatever's needed.
xoxoxo
Anne
Sunday, September 6, 2009
Ok, everyone. Now that you have the time line, another few words: If Dad's preliminary diagnosis stands and this is lung cancer, we still all need to remember that he is feeling fine right now. He is still with us. We have been reminded here that life in finite. We still have time to enjoy his company, and he still has much to offer us all. John has repeated several times for us all to take one thing at a time, as the information comes, and this is good advice. As we do that, let us all appreciate each day we are given, not just with him, but with all who share our lives. I only pray that if this is what will eventually take him from us, it will be slow moving, until suffering arrives. At that time, I hope and pray that God takes him home quickly.
Love You All,
Pat
Love You All,
Pat
Time Line
All Pat's info:
Doctors:
1. Primary: Dr. Wong
2. Internal Med.: Dr. Tran (his doctor in the hospital, and one who read the x-ray and CT scan)
3. Oncologist: Dr. Chaisanguanthum (Dr. Chaise)
Timeline for Dad
Aug 18, 2009: Pulsation feeling in left arm for approx. 10 seconds. Then experienced lingering numbness/weakness in arm and hand/fingers all complicated/confused by his Charcot Marie Tooth disease. As feeling and strength returned in arm, numbness in fingers remained
Aug 24, 2009: Pulsation feeling in left arm for approx. 15 seconds followed by same symptoms listed above.
Obtained Doctor’s appointment with Dr. Wong for Aug _____ , 2009 and some tests were ordered: – MRI scheduled for Sept 1, 2009 at 5:30PM. Blood drawn for testing. (Mom and Dad were at this appt.)
Sept 1, 2009: In am, while still in bed, pulsation feeling in left arm for approx 5 minutes, followed by same symptoms listed above. Called Dr. Wong’s office and left message.
Went to MRI appt at 5:30. (Pat with Mom and Dad) After MRI, spoke to Dr. Wong or his office, and was told he was going on vacation soon and an appt. was scheduled for Sept 3, 2009 at around 11:00am, prior to his vacation departure.
Sept 3, 2009: Dr. Wong explained that although the radiologist had not reviews the MRI, they could see 2 “shadows” in the brain area. When pressed on what this could be, cancer was mentioned, but advised to take it slow, and that a lot of test would be ordered. (Mom and Dad at this appt) Upon returning home, they received a call to schedule a “contrast” MRI at 5:00 the same day. A neurology appt was set up for Sept 4, 2009 with Dr. Shaw.
Sept 3, 2009: At 5:00, went to Contrast MRI appt. (Pat with Mom and Dad)
Sept 4, 2009: At 9:45, went to neurology appt – Dr. Shaw (Pat with Dad) Dr Shaw ran Dad through some strength tests and reflex tests. No discernable difference was found between his left and right side. He then disclosed that there were 3 tumors in Dad’s brain – 2 on his left and 1 on his right. Being that there was more than 1, they believed that there was another tumor somewhere in his body that had metastasized, or traveled to his brain. We were told that since it had metastasized, they would most likely find that the tumors would be malignant/cancerous. They would need to run tests and they felt the most time efficient way to do that was to admit him to the hospital. We were advised to go directly to emergency to be admitted. I asked about the blood tests that had been done with Dr. Wong’s office on Sept 3rd, and was told that everything in those tests looked ok, and that Dad’s prostrate was ok. Dr. Shaw also stated that they would be putting Dad on anti-seizure medicine (because the tumors can cause seizures), and steroids (to control swelling). Dr. Shaw also stated that the pulsation in the left arm was not a seizure.
Arrived at emergency at 10:50am, and was seen to an emergency bed/bay at approximately 12:45. At approx 1:00pm, Dr. Blair spoke a few words to Dad, said they would take some blood for testing and do an x-ray, and internal medicine doctor would come to admit him. Over time, blood was drawn, and a chest x-ray was done, and an iv was installed with anti-seizure and steroid medicine. The internal medicine doctor – Dr. Tran – came by and spoke to us briefly. She again explained why they thought there was another tumor somewhere else – because there were 3 in his brain, rather than 1. She could not say how long Dad would remain in the hospital, since they didn’t know how quickly they would find the main source. She also did a private examination on Dad. She said they would be admitting him, and were trying to get a bed ready. She later returned to say that they had found a mass/tumor on his left lung from the x-ray. We were told that it was typical of Lung Cancer to travel to the brain, so this probably was the primary source. The brain tumors are considered a “secondary” cancer, and although in the brain, would be considered lung cancer. They would continue with a CT scan (to see the lung tumor more clearly and to see if there were any other tumors) and schedule a biopsy, which looked like it would be Tuesday. They would continue to admit him to the hospital to get the CT scan done the next morning, and to monitor him on the new medication to make sure Dad tolerated them ok. Later, Dr. Chaisanguanthum, -goes by Dr. Chaise) Oncologist, came in and spoke to Dad, Mom, Anne & John. (Theresa and I were in the waiting room) She spoke to them about the tumor on the lung, and that it would be inoperable, since it has metastasized. Dad asked about removal of the lung, and she said there would be no sense putting him through that major surgery, because even if they removed it, he still would have cancer. (This is again under the assumption that it is cancer.) She said that her primary concern is to treat the brain tumors ASAP. They then spent some time trying to move up the biopsy appt., while finally moving him to the hospital. When John & Joe left the hospital that night, they thought that the biopsy would be done the next morning, along with the CT scan.
Sept. 5, 2009: Pat arrived at the hospital at approx 9:00am. Dad was awake and stated that he they would not serve him breakfast due to the CT scan. He was on an iv for fluids. They did not have a time on that yet, and the biopsy was moved back to Tuesday. Around 10:30 am, Dr. Chaise arrived, and during our conversation with her, Mom and Anne arrive to hear most of what she had to say. We were told that for the CT scan, they would normally give a contrast solution in Dad’s vein, but that this was hard the kidney’s and his were not in good shape. I asked about that because in viewing Dad’s med. records it shows he has chronic kidney failure, and Mom and Dad have never been told that. She said that at Dad’s age, basically everyone has this. Anyway, she said that they could also give him a contrast solution orally, but this made the scan less effective. (I believe that this was less harsh on the kidney’s, but still harsh, so there was talk that perhaps they wouldn’t do the CT Scan, although they wanted the info it would provide) She left the room to contact Dr. Tran. Dad’s nurse came into the room with 2 bottles of a white solution – looked like milk – and poured one in a cup for Dad to drink. Dr. Chaise returned as Dad was starting to drink, and confirmed that this was what they would do. As Dad drank, Dr. Chaise discussed her primary concern was the brain tumors since they will cause a lot of problems if they continue to grow. She confirmed that the br. tumor on the left is the largest, and that there are 2 on the right. She also confirmed that the pulsation in Dad’s arm was not a seizure, but probably one of the tumors pressing on a nerve. Dr. Chaise stated that she wants preliminary info from the biopsy confirming cancer asap, so she could then set up radiation treatments to attempt to shrink the brain tumors. Even though she would have liked the biopsy to happen sooner, she said that the reality was that they still probably wouldn’t get any results until Tues or Wed., so, not getting the biopsy done on Saturday morning was not causing much of a delay. She said that she hopes to have a preliminary result of the biopsy by Wed. or Thurs at the latest, so she can set up the radiation treatments, which could then happen as soon as Thursday or Friday. The radiation plan will be for a week or two – done M – F, and the appointments will be at a Kaiser location on Sunset Blvd., & Vermont. The actual radiation lasts for a few minutes, and will be done daily. There will also be a consultation appt. that could happen locally, but will probably be at the Sunset location for time efficiency. Side effects of the treatment are: sunburn to area treated, hair loss to area treated, and there can be cognitive function loss. This risk is FAR less than the risk of not doing the radiation treatment. She stated that they have good results with the radiation treatment, and that their expectation would be for the tumors to shrink, or for the treatment to at least slow the growth of the tumors. Towards the end of the radiation treatment, or once completed, Dad will have an appt with Dr. Chaise to go over his prognosis, any further treatments that might be available and that they might suggest. She said that due to the side effects of steroids, she will be trying to wean him off of steroids after the completion of the radiation treatment.
Dad was taken at approx 12:00 noon, and Anne, Mom and I left to get some lunch. We returned about 1:20 or so, and Dad was just finishing his lunch, stating the scan had only taken about 5 minutes.
Dr. Tran arrived around 2:30 or 3:00pm and discussed the preliminary results of the CT scan. It has not been read by the radiologist yet, but did confirm a large tumor on his left lung. She did not see any other tumor, but said the radiologist will get a better reading on this. She was able to pull up the scan on the computer in Dad’s room for us to see it. At this time we were informed that the steroids can cause hypertension, or high blood sugar levels, and this was the case with Dad. To manage this, they would have to prescribe insulin shots, or a diabetes pill, and a machine to measure his blood sugar levels. She said the pill would be easier, so that was prescribed. These pills should drop his blood sugar level, and he is to take ½ of a pill each morning with breakfast. He is not to take this pill if he is not eating breakfast, like prior to a test that requires an empty stomach. Dad is to measure his blood sugar 4 times per day – before breakfast, lunch and dinner, and prior to going to bed. A good blood sugar level is between 70 and 110. In the event that it reads as high as 300, we are to call Kaiser. In the event is drops below 70, he is to drink a glass of juice and some milk, or eat a piece of sweet candy – like chocolate- that melts quickly, and call Kaiser with his blood sugar reading. Signs of low blood sugar are confusion, being shaky, and/or sweaty. Low blood sugar is more dangerous. No real signs of too high a level, but he might just not feel right. He was also sent home with the steroid medicine – taken 4 times per day – like 9am, 1, 5, & 9pm, and the anti-seizure medicine. He is not to take aspirin or ibuprofen, but to continue with his other meds for high blood pressure, etc.
Dad was release and home by approx. 6:30pm, while Anne and Mom picked up his meds.
Dad is to set up an appt with his primary doctor – Dr Wong in 2 wks – and at this time will get more information on what the radiologist found on the CT scan. His biopsy appt is on Tues, 9/8 at 8:00am and John will take him. He is not to eat or drink anything after midnight Monday night.
And, by the way, his nurse made his day when she said he sounded just like Sean Connery. And... Anne and I did eat some of his chocolate. It was Cadbury - can you blaim us! He will have to make do with the apple juice. That is safe, at least til the grandkids come over!
Pat
Doctors:
1. Primary: Dr. Wong
2. Internal Med.: Dr. Tran (his doctor in the hospital, and one who read the x-ray and CT scan)
3. Oncologist: Dr. Chaisanguanthum (Dr. Chaise)
Timeline for Dad
Aug 18, 2009: Pulsation feeling in left arm for approx. 10 seconds. Then experienced lingering numbness/weakness in arm and hand/fingers all complicated/confused by his Charcot Marie Tooth disease. As feeling and strength returned in arm, numbness in fingers remained
Aug 24, 2009: Pulsation feeling in left arm for approx. 15 seconds followed by same symptoms listed above.
Obtained Doctor’s appointment with Dr. Wong for Aug _____ , 2009 and some tests were ordered: – MRI scheduled for Sept 1, 2009 at 5:30PM. Blood drawn for testing. (Mom and Dad were at this appt.)
Sept 1, 2009: In am, while still in bed, pulsation feeling in left arm for approx 5 minutes, followed by same symptoms listed above. Called Dr. Wong’s office and left message.
Went to MRI appt at 5:30. (Pat with Mom and Dad) After MRI, spoke to Dr. Wong or his office, and was told he was going on vacation soon and an appt. was scheduled for Sept 3, 2009 at around 11:00am, prior to his vacation departure.
Sept 3, 2009: Dr. Wong explained that although the radiologist had not reviews the MRI, they could see 2 “shadows” in the brain area. When pressed on what this could be, cancer was mentioned, but advised to take it slow, and that a lot of test would be ordered. (Mom and Dad at this appt) Upon returning home, they received a call to schedule a “contrast” MRI at 5:00 the same day. A neurology appt was set up for Sept 4, 2009 with Dr. Shaw.
Sept 3, 2009: At 5:00, went to Contrast MRI appt. (Pat with Mom and Dad)
Sept 4, 2009: At 9:45, went to neurology appt – Dr. Shaw (Pat with Dad) Dr Shaw ran Dad through some strength tests and reflex tests. No discernable difference was found between his left and right side. He then disclosed that there were 3 tumors in Dad’s brain – 2 on his left and 1 on his right. Being that there was more than 1, they believed that there was another tumor somewhere in his body that had metastasized, or traveled to his brain. We were told that since it had metastasized, they would most likely find that the tumors would be malignant/cancerous. They would need to run tests and they felt the most time efficient way to do that was to admit him to the hospital. We were advised to go directly to emergency to be admitted. I asked about the blood tests that had been done with Dr. Wong’s office on Sept 3rd, and was told that everything in those tests looked ok, and that Dad’s prostrate was ok. Dr. Shaw also stated that they would be putting Dad on anti-seizure medicine (because the tumors can cause seizures), and steroids (to control swelling). Dr. Shaw also stated that the pulsation in the left arm was not a seizure.
Arrived at emergency at 10:50am, and was seen to an emergency bed/bay at approximately 12:45. At approx 1:00pm, Dr. Blair spoke a few words to Dad, said they would take some blood for testing and do an x-ray, and internal medicine doctor would come to admit him. Over time, blood was drawn, and a chest x-ray was done, and an iv was installed with anti-seizure and steroid medicine. The internal medicine doctor – Dr. Tran – came by and spoke to us briefly. She again explained why they thought there was another tumor somewhere else – because there were 3 in his brain, rather than 1. She could not say how long Dad would remain in the hospital, since they didn’t know how quickly they would find the main source. She also did a private examination on Dad. She said they would be admitting him, and were trying to get a bed ready. She later returned to say that they had found a mass/tumor on his left lung from the x-ray. We were told that it was typical of Lung Cancer to travel to the brain, so this probably was the primary source. The brain tumors are considered a “secondary” cancer, and although in the brain, would be considered lung cancer. They would continue with a CT scan (to see the lung tumor more clearly and to see if there were any other tumors) and schedule a biopsy, which looked like it would be Tuesday. They would continue to admit him to the hospital to get the CT scan done the next morning, and to monitor him on the new medication to make sure Dad tolerated them ok. Later, Dr. Chaisanguanthum, -goes by Dr. Chaise) Oncologist, came in and spoke to Dad, Mom, Anne & John. (Theresa and I were in the waiting room) She spoke to them about the tumor on the lung, and that it would be inoperable, since it has metastasized. Dad asked about removal of the lung, and she said there would be no sense putting him through that major surgery, because even if they removed it, he still would have cancer. (This is again under the assumption that it is cancer.) She said that her primary concern is to treat the brain tumors ASAP. They then spent some time trying to move up the biopsy appt., while finally moving him to the hospital. When John & Joe left the hospital that night, they thought that the biopsy would be done the next morning, along with the CT scan.
Sept. 5, 2009: Pat arrived at the hospital at approx 9:00am. Dad was awake and stated that he they would not serve him breakfast due to the CT scan. He was on an iv for fluids. They did not have a time on that yet, and the biopsy was moved back to Tuesday. Around 10:30 am, Dr. Chaise arrived, and during our conversation with her, Mom and Anne arrive to hear most of what she had to say. We were told that for the CT scan, they would normally give a contrast solution in Dad’s vein, but that this was hard the kidney’s and his were not in good shape. I asked about that because in viewing Dad’s med. records it shows he has chronic kidney failure, and Mom and Dad have never been told that. She said that at Dad’s age, basically everyone has this. Anyway, she said that they could also give him a contrast solution orally, but this made the scan less effective. (I believe that this was less harsh on the kidney’s, but still harsh, so there was talk that perhaps they wouldn’t do the CT Scan, although they wanted the info it would provide) She left the room to contact Dr. Tran. Dad’s nurse came into the room with 2 bottles of a white solution – looked like milk – and poured one in a cup for Dad to drink. Dr. Chaise returned as Dad was starting to drink, and confirmed that this was what they would do. As Dad drank, Dr. Chaise discussed her primary concern was the brain tumors since they will cause a lot of problems if they continue to grow. She confirmed that the br. tumor on the left is the largest, and that there are 2 on the right. She also confirmed that the pulsation in Dad’s arm was not a seizure, but probably one of the tumors pressing on a nerve. Dr. Chaise stated that she wants preliminary info from the biopsy confirming cancer asap, so she could then set up radiation treatments to attempt to shrink the brain tumors. Even though she would have liked the biopsy to happen sooner, she said that the reality was that they still probably wouldn’t get any results until Tues or Wed., so, not getting the biopsy done on Saturday morning was not causing much of a delay. She said that she hopes to have a preliminary result of the biopsy by Wed. or Thurs at the latest, so she can set up the radiation treatments, which could then happen as soon as Thursday or Friday. The radiation plan will be for a week or two – done M – F, and the appointments will be at a Kaiser location on Sunset Blvd., & Vermont. The actual radiation lasts for a few minutes, and will be done daily. There will also be a consultation appt. that could happen locally, but will probably be at the Sunset location for time efficiency. Side effects of the treatment are: sunburn to area treated, hair loss to area treated, and there can be cognitive function loss. This risk is FAR less than the risk of not doing the radiation treatment. She stated that they have good results with the radiation treatment, and that their expectation would be for the tumors to shrink, or for the treatment to at least slow the growth of the tumors. Towards the end of the radiation treatment, or once completed, Dad will have an appt with Dr. Chaise to go over his prognosis, any further treatments that might be available and that they might suggest. She said that due to the side effects of steroids, she will be trying to wean him off of steroids after the completion of the radiation treatment.
Dad was taken at approx 12:00 noon, and Anne, Mom and I left to get some lunch. We returned about 1:20 or so, and Dad was just finishing his lunch, stating the scan had only taken about 5 minutes.
Dr. Tran arrived around 2:30 or 3:00pm and discussed the preliminary results of the CT scan. It has not been read by the radiologist yet, but did confirm a large tumor on his left lung. She did not see any other tumor, but said the radiologist will get a better reading on this. She was able to pull up the scan on the computer in Dad’s room for us to see it. At this time we were informed that the steroids can cause hypertension, or high blood sugar levels, and this was the case with Dad. To manage this, they would have to prescribe insulin shots, or a diabetes pill, and a machine to measure his blood sugar levels. She said the pill would be easier, so that was prescribed. These pills should drop his blood sugar level, and he is to take ½ of a pill each morning with breakfast. He is not to take this pill if he is not eating breakfast, like prior to a test that requires an empty stomach. Dad is to measure his blood sugar 4 times per day – before breakfast, lunch and dinner, and prior to going to bed. A good blood sugar level is between 70 and 110. In the event that it reads as high as 300, we are to call Kaiser. In the event is drops below 70, he is to drink a glass of juice and some milk, or eat a piece of sweet candy – like chocolate- that melts quickly, and call Kaiser with his blood sugar reading. Signs of low blood sugar are confusion, being shaky, and/or sweaty. Low blood sugar is more dangerous. No real signs of too high a level, but he might just not feel right. He was also sent home with the steroid medicine – taken 4 times per day – like 9am, 1, 5, & 9pm, and the anti-seizure medicine. He is not to take aspirin or ibuprofen, but to continue with his other meds for high blood pressure, etc.
Dad was release and home by approx. 6:30pm, while Anne and Mom picked up his meds.
Dad is to set up an appt with his primary doctor – Dr Wong in 2 wks – and at this time will get more information on what the radiologist found on the CT scan. His biopsy appt is on Tues, 9/8 at 8:00am and John will take him. He is not to eat or drink anything after midnight Monday night.
And, by the way, his nurse made his day when she said he sounded just like Sean Connery. And... Anne and I did eat some of his chocolate. It was Cadbury - can you blaim us! He will have to make do with the apple juice. That is safe, at least til the grandkids come over!
Pat
Saturday, September 5, 2009
Hi Everyone:
Pat, John, Joe and I were all at mom and dads together for a few minutes tonight. I am pretty sure most of us are up to speed on dad's situation.
Pat took really good notes all day today at the hospital and there are a lot of details about various drugs that dad will be taking.
In addition, he has a biopsy on Tuesday morning. Once results are confirmed, he will have (2 weeks? 10 days?) of radiation treatments for the tumors in his brain.
We all decided that a blog would be the best way for us all to communicate rather than our standard email method. We can use this as a running diary to share data (for instance, Pat will be posting all the various prescriptions and whatnot) as well as working out schedules for driving, etc.
We can all sign in using the same email / password:
AnneYenny@gmail.com
0909scotland
You only need to sign in to post info. You can "comment" on a post but I don't see the point. I think anything you would normally be putting in an email to all of us, just do a new posting.
You should also sign up to "follow" the blog using your usual email address. That way when any of us posts new information you will get an email notification.
It will keep all information up to date and in one place. I think we should make sure we "label" well, for instance if every update to do with drugs is labeled "drugs" it will be easier to find if needed.
If there was a time I was more grateful for the brothers and sisters I have, or their spouses, I can't imagine when it was.
xoxoxo
Anne
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