Hi, This is Sue's father, posting for her. She can't type very well, mixing letters and making emails look more like word scrambles and typing some words backwards w/o even realizing it. This is why she hasn't posted a second part of her recent hospital stay or any further updates to this blog. If anyone from MemingiomaMommas wants to post a link to this blog to the MM forum/message board please feel free to do so since she isn't able to log on there at this time. I know she could use some good cheer in the comments section for this blog so she doesn't get depressed.
Sue wanted me to THANK ALL of you for your thoughts, helpful answers, Setter Zen and prayers. She had her latest MRI last evening (Thursday 6pm) and now the long wait until next Friday when she has her next appt with Dr Peter Black at Brigham & Women's Hospital during which time we will find out what the results are. The good news is that we haven't heard from them today, which means there is no immediate danger! Her new address for cards is Susan Linhares c/o Louise Kelsey 67 Ocean Dr. Mattapoisett, MA 02739.
Sue also wanted me to post an update on her condition, from an email I had recently posted to our family and friends. She thinks it sums up much of how she has been feeling very well. It follows:
Hi
Since her brain tumor operation, daughter Susan has been failing with
significant short-term memory loss, rambling talks, unconsciously writing with
words spelled in reverse, occasional disorientation and right arm numbness and
non-movement, full double vision, inability to open her mouth, insomnia, and so
on. She has been staying with her maternal grandmother, Louise Kelsey, and is
not able to stay alone at her own home. Last Friday she had a review with her
doctor (Dr. Peter Black) and he ordered a series of tests and evaluations.
In a few minutes (6 PM Thursday) she will be having an MRI in Boston to see if
any cause can be detected: the options include bleeding from the area where the
veinous tumor was excised, a sudden tumor regrowth, and a missed tumor in the
brain stem. None of these are good. We hope for a better option.
She asked me to ask our family and friends for prayers.
Best wishes to all
John
Saturday, September 30, 2006
Monday, September 18, 2006
Back From The Hospital Again
After 5 days I am FINALLY home from the hospital - hooray!! Thanks so much for all the calls and comments that you have all posted...you will never know how mcch it means to me. The biggest Thanks of all go out to Karol Paduch for being such a great friend and especially Neva Ganun & her husband who helped in a HUGE way to get me the correct care. I am going to post about my latest Hospital Stay, but it will be in two parts since I just gell asleep while I was typing this first part (below). Excuse any typos, the nerves in my brain ato my fingers aren't working correctly and I"ll explain that in a following post (I've re-read what I"ve written several times and don't have the strength to proof read any more).
I was able to get a ride to Jordon hospital in Plymouth by my mother-in-law Arlene which was a great relief. Once the admitting nurse heard I had recently had brain surgery I was instantly admitted and I was amazed at how fast every thing progressed (bloodwork, CT scan, IVs, etc). My mom works in plymouth, just a mile from the hospital so she came by as soon as she was out of work. The doctors & nurses at Jordan were wonderful!! After a consult with the folks at Brigham and Woman's Hospital they decided that I needed to be up there so I was transferred by ambulance up to Boston, I actually had a fun ambulance ride since the 2 EMTs that drove me loved to crack jokes and they had my same sarcastic sense of humor LOL. Once in the emergency room at Brigham & Womans Hospital (B&GH) I had great nurses but lowsy (sp?) doctors, except for two, who I'll name later)! They kept saying that nothing was wrong with me and to go home, even though I couldn't open my mouth at all, my gums were totally inflamed, I was seeing double all the time and had a bit of vertigo. At 1:30 am I actually had an intern neurosurgeon who came to my bed and said I HAD TO GO HOME! I disagreed and said I wish he could be inside my body so he could see what I felt like. At that point he said that I should be glad I didn't have puss in my brain and I was being silly. I asked him once again what was causing the problems and he said that I DID have some thing going on and they knew it but it wasn't life threatening so I should just go home. I asked what it was that they had found and he refused to tell me. During this time not one doctor had actually examined me or asked to look at my mouth. This doctor, and the two others that had come into the room and just stood above me while I lay in the bed and said "You incision looks fine and there is nothing wrong". When the doctors had left I didn't know what to do. I knew that there was something wrong and I didn't feel well but no one would listen. I also knew from some of the emails and comments I had received that I had a right to fight for myself to get good health care and I want to thank those of you that have said that sometimes you just can't listen to the doctors when they say nothing is wrong. I also knew that if they released me at 1:30am from the hospital I had no where to go since I was 1 1/2 hours away from home. So I layed in bed and felt sorry for myself for a bit, not knowing what to do. Finally my nurse, Marlene came in and noticed how down I was and told me that she thought that I had been treated horribly and she was going to take care of that. She got me some pain relievers (Yea Morphine), got me a more comfortable bed since I was on a bed that didn't have a real mattress, and then got me warmed blankets :-) I can't tell you how wonderful it felt to have someone listen to me and understand that there was a problem! Shortly after that Marlene came in with a new armband and said that she had ordered an xray of my mouth and jaw and that even thoug she was just a nurse (and not supossed to do this) she had admitted me to the hospital so I was not going home, and as soon as they had a room on the Neuro ward (10th floor) that I would be sent up there. Unfortunately by that time it was already an hour after Marlene was suposded to be off duty so I had another nures, Zada. Zada was very understafed it seemed and they had several trama and GSWs come in so I didn't see anyone for about 3 hours. When I finally saw someone they had come to move me and I thought I was finally going up to the 10th floor...boy was I wrong. They basically kicked me out of the room in the ER and put me in the hallway near the door to wait. Well everytime the door opened there was a mass of Kayoss (sp?). cold wind, and noise. There was also VERY bright lights and one of the problems I was having dealt with bright lights (in my house I have put 60 watt bulbs on dimmer switches). I asked for a nurse and f-i-n-a-l-y some one bothered to come by to see what I wanted. I asked for some releif from the glare and was given a hand towel to put over my face :-( So I started to feel badly again; alone in the ER of B&WH having to fight with doctors (which is so beyond how I usually do things), in a hallway with prisoners being brought in that were spewing foul language but getting awesome care, and basically feeling like I was a nothing that didn't matter and was just a bother to them. Finally Zada came by as I was silently crying (only out of my right eye which was very strange) and said "Oh I'm so sorry I saw you there when I cam back from my dinner and remembered that you were supposed to be transfered. They had a bed ready for you hours ago...oops. sorry" I hope she enjoyed her food because I was in excruciating pain from the noise and bright lights, hadn't been able to eat in 4 days, not to mention that I was starting to feel like I just didn't matter. After that I was moved up to the 10th floor (10D room72).
I'm going to finish my story worromot (oops, that should be tomorrow but I"ve been spelling a bunch of words backwards for some reason, without even realizing it, and that is really weird!). Until then just know that they have finally found out what is happening and it has to do with my nerve endings. I do feel a slight bit better and tht should improve each day. I'll write more later.
Sue
I was able to get a ride to Jordon hospital in Plymouth by my mother-in-law Arlene which was a great relief. Once the admitting nurse heard I had recently had brain surgery I was instantly admitted and I was amazed at how fast every thing progressed (bloodwork, CT scan, IVs, etc). My mom works in plymouth, just a mile from the hospital so she came by as soon as she was out of work. The doctors & nurses at Jordan were wonderful!! After a consult with the folks at Brigham and Woman's Hospital they decided that I needed to be up there so I was transferred by ambulance up to Boston, I actually had a fun ambulance ride since the 2 EMTs that drove me loved to crack jokes and they had my same sarcastic sense of humor LOL. Once in the emergency room at Brigham & Womans Hospital (B&GH) I had great nurses but lowsy (sp?) doctors, except for two, who I'll name later)! They kept saying that nothing was wrong with me and to go home, even though I couldn't open my mouth at all, my gums were totally inflamed, I was seeing double all the time and had a bit of vertigo. At 1:30 am I actually had an intern neurosurgeon who came to my bed and said I HAD TO GO HOME! I disagreed and said I wish he could be inside my body so he could see what I felt like. At that point he said that I should be glad I didn't have puss in my brain and I was being silly. I asked him once again what was causing the problems and he said that I DID have some thing going on and they knew it but it wasn't life threatening so I should just go home. I asked what it was that they had found and he refused to tell me. During this time not one doctor had actually examined me or asked to look at my mouth. This doctor, and the two others that had come into the room and just stood above me while I lay in the bed and said "You incision looks fine and there is nothing wrong". When the doctors had left I didn't know what to do. I knew that there was something wrong and I didn't feel well but no one would listen. I also knew from some of the emails and comments I had received that I had a right to fight for myself to get good health care and I want to thank those of you that have said that sometimes you just can't listen to the doctors when they say nothing is wrong. I also knew that if they released me at 1:30am from the hospital I had no where to go since I was 1 1/2 hours away from home. So I layed in bed and felt sorry for myself for a bit, not knowing what to do. Finally my nurse, Marlene came in and noticed how down I was and told me that she thought that I had been treated horribly and she was going to take care of that. She got me some pain relievers (Yea Morphine), got me a more comfortable bed since I was on a bed that didn't have a real mattress, and then got me warmed blankets :-) I can't tell you how wonderful it felt to have someone listen to me and understand that there was a problem! Shortly after that Marlene came in with a new armband and said that she had ordered an xray of my mouth and jaw and that even thoug she was just a nurse (and not supossed to do this) she had admitted me to the hospital so I was not going home, and as soon as they had a room on the Neuro ward (10th floor) that I would be sent up there. Unfortunately by that time it was already an hour after Marlene was suposded to be off duty so I had another nures, Zada. Zada was very understafed it seemed and they had several trama and GSWs come in so I didn't see anyone for about 3 hours. When I finally saw someone they had come to move me and I thought I was finally going up to the 10th floor...boy was I wrong. They basically kicked me out of the room in the ER and put me in the hallway near the door to wait. Well everytime the door opened there was a mass of Kayoss (sp?). cold wind, and noise. There was also VERY bright lights and one of the problems I was having dealt with bright lights (in my house I have put 60 watt bulbs on dimmer switches). I asked for a nurse and f-i-n-a-l-y some one bothered to come by to see what I wanted. I asked for some releif from the glare and was given a hand towel to put over my face :-( So I started to feel badly again; alone in the ER of B&WH having to fight with doctors (which is so beyond how I usually do things), in a hallway with prisoners being brought in that were spewing foul language but getting awesome care, and basically feeling like I was a nothing that didn't matter and was just a bother to them. Finally Zada came by as I was silently crying (only out of my right eye which was very strange) and said "Oh I'm so sorry I saw you there when I cam back from my dinner and remembered that you were supposed to be transfered. They had a bed ready for you hours ago...oops. sorry" I hope she enjoyed her food because I was in excruciating pain from the noise and bright lights, hadn't been able to eat in 4 days, not to mention that I was starting to feel like I just didn't matter. After that I was moved up to the 10th floor (10D room72).
I'm going to finish my story worromot (oops, that should be tomorrow but I"ve been spelling a bunch of words backwards for some reason, without even realizing it, and that is really weird!). Until then just know that they have finally found out what is happening and it has to do with my nerve endings. I do feel a slight bit better and tht should improve each day. I'll write more later.
Sue
Wednesday, September 13, 2006
Latest Update
I wanted to thank everyone who responded to my last post. I'm a bit embarrassed that I was feeling so sorry for myself!
It has taken a few days and several phone calls (leaving messages) but I was finally able to get through to one of Dr Black's nurses and another member of his staff a few minutes ago. I had felt slightly better on Sunday and Monday, partially thanks to one Braintmr list member who was a help with my pain meds and another list member who I was able to talk to and helped to calm some of my fears. I did write an email to the Drs office as well as leaving several messages. Then late yesterday I started to feel really strange, A warm tight feeling started in the back of my head and I felt like I was going to pass-out or throw-up if I stood up or talked. I also started having double vision out of my right eye, not just when I had both eyes open. So I left another message with the Drs office and today several people finally called back. I think they are taking me seriously now! They told me to get up to Brigham & Womens ER today and if that is too far (it is 1 1/2 hrs away) then to go to Jordan Hospital in Plymouth which is a satellite hospital for BWH. Now I'm waiting to hear back to see if anyone in my family can give me a ride up there, so while I wait I thought I'd let you all know what was going on. I know I should have probably gone back sooner but I really was starting to feel better after I had written my last post, and talked to family members last Saturday night, stopped taking all the tylenol, etc. I thought that I was back on the road to recovery and wanted to start doing things around the house. Last night scared me a lot though and I'm ready to go back to the hospital, not wanting to have that feeling ever happen again!
Just thought I'd give you an update, I'll post again when I get back from the
hospital. I just don't have the strength to email everyone personally at this time. Oh, on a slightly happier note, it looks like we will be able to make our house payment thanks to my husband's boss and my Dad :-)
It has taken a few days and several phone calls (leaving messages) but I was finally able to get through to one of Dr Black's nurses and another member of his staff a few minutes ago. I had felt slightly better on Sunday and Monday, partially thanks to one Braintmr list member who was a help with my pain meds and another list member who I was able to talk to and helped to calm some of my fears. I did write an email to the Drs office as well as leaving several messages. Then late yesterday I started to feel really strange, A warm tight feeling started in the back of my head and I felt like I was going to pass-out or throw-up if I stood up or talked. I also started having double vision out of my right eye, not just when I had both eyes open. So I left another message with the Drs office and today several people finally called back. I think they are taking me seriously now! They told me to get up to Brigham & Womens ER today and if that is too far (it is 1 1/2 hrs away) then to go to Jordan Hospital in Plymouth which is a satellite hospital for BWH. Now I'm waiting to hear back to see if anyone in my family can give me a ride up there, so while I wait I thought I'd let you all know what was going on. I know I should have probably gone back sooner but I really was starting to feel better after I had written my last post, and talked to family members last Saturday night, stopped taking all the tylenol, etc. I thought that I was back on the road to recovery and wanted to start doing things around the house. Last night scared me a lot though and I'm ready to go back to the hospital, not wanting to have that feeling ever happen again!
Just thought I'd give you an update, I'll post again when I get back from the
hospital. I just don't have the strength to email everyone personally at this time. Oh, on a slightly happier note, it looks like we will be able to make our house payment thanks to my husband's boss and my Dad :-)
Saturday, September 09, 2006
I'm Home And An Update
I finally got home last Sunday, Sept 3, 2006. It was great to be home and I love being back with my Gordon Setter "kids". Unfotrunately my 11 year old Gordon boy Sutton wasn't feeling well and needed to have emergency surgery that evening to drain a large abscess in his throat. Thankfully I have a wonderful Vet who was able to get him in to place the drain that evening (Thanks so much Dr Sue!).
Since the operation I have had some trouble opening my mouth and chewing due to the cut jaw muscle from the surgery. The week before I came home it felt like my jaw was starting to heal, but now my gums were starting to get swollen, bubbly, and my teeth were starting to hurt. It has progressivly gotten worse. I am taking a lot of extra strength tylenol (and tylenol PM at night). I have no idea what is happening to my teeth & gums but the pain is almost unbearable. By this past Tuesday I was having tons of pain and was back to taking the perscription pain relievers which I didn't like taking, but it was the only way to cut through the pain. I called Dr Black's office and spoke to one of his nurses who stated that she has never seen this as a problem from the surgery. She suggested having my primary care doctor get a CBC count incase there is an infection. I called my Primary care doctor and his nurse said they could not scedule a CBC count for me (I can't remember the reason she mentioned, darned short-term memory) and she said I needed to see a dentist. Well I don't have a dentist at this time, having fired my last one (see a post written in Aug), don't have any dental insurance, and I didn't see how a dentist would help anyway since I couldn't open my mouth any wider then to put a finger in (about 1/2 inch). I was able to get an oral rinse and ambersol to help with the pain and hopefully clear up any infection. It has seemed to help about 15% for a couple of days. Now it doesn't seem to be working anymore and I'm miserable. My jaw only opens about 1/3 of an inch now and the last two days the headache pain has returned behind my eye. The double vision, pressure, and blurryness is a bit worse too. I don't know what to do and am starting to get very depressed. I can't afford any more medical treatment and as it is we don't have any money to pay our mortgage so we may lose our house after Sept 14. I applied to an organization that is supposed to financially help people in the dogshow world who have medical problems but it looks like since I don't have a malignant tumor they won't help. I just don't know what to do and am loath to ask anyone for help since I know everyone has their own problems. I just hope I feel better soon since there is nothing else that I can do to feel better at this time. I've got a lot of stress not being able to work or even help out around the house and I feel horrible, I'd say worse then when I left the hospital. I've even thought about going to the emergency room but can't get to a hospital by myself and that would only cost us more $$. I've already disrupted the lives and work schedules of my husband and mother and can't ask them to take any more time off just to drive me to the doctors. There is so much I need to do around the house and yet I'm afraid to do anything because unless I'm sleeping I feel awful and don't want to make it worse. All I can eat is very soft canned vegetables, masshed potatoes, and sherbert. I suck on popscicles and that makes it feel a bit better but the popscicles are too thick to fit in my mouth since I can't open my jaw very wide. I tried to eat a sandwich but have to flatten and then squish the food between my teeth (not very appetizing). Each day I think that it has to get better, perhaps it is just the nerves healing? If I call Dr Black's office again I will probably only get told that there is nothing they can do again, besides I get the feeling they are busy with other people who are in worse shape then I am. My primary care doctor's office didn't want anything to do with me since I've had brain surgery, and since I don't have a dentist nor dental insurance there is no way any dentist will see me for an emergency, especially since I can't open my mouth! I'm so confused :-( All I wanted was some antibiotics, I know I have an infection of some sort, even if I don't have a temperature. I've tried so hard to be optomistic about this whole thing, but right now I feel like a fool. I can put up a great front, but when I'm alone I know how I really feel. If anyone can spare an extra prayer or bit of Setter Zen I would appreciate it a lot. I had been waiting until I felt better to update the blog but I guess that isn't going to happen any time soon so I thought I would post an update, sorry I'm having a pity-party. I'm so confused about what to do....guess I'll go back to bed.
Sue
Since the operation I have had some trouble opening my mouth and chewing due to the cut jaw muscle from the surgery. The week before I came home it felt like my jaw was starting to heal, but now my gums were starting to get swollen, bubbly, and my teeth were starting to hurt. It has progressivly gotten worse. I am taking a lot of extra strength tylenol (and tylenol PM at night). I have no idea what is happening to my teeth & gums but the pain is almost unbearable. By this past Tuesday I was having tons of pain and was back to taking the perscription pain relievers which I didn't like taking, but it was the only way to cut through the pain. I called Dr Black's office and spoke to one of his nurses who stated that she has never seen this as a problem from the surgery. She suggested having my primary care doctor get a CBC count incase there is an infection. I called my Primary care doctor and his nurse said they could not scedule a CBC count for me (I can't remember the reason she mentioned, darned short-term memory) and she said I needed to see a dentist. Well I don't have a dentist at this time, having fired my last one (see a post written in Aug), don't have any dental insurance, and I didn't see how a dentist would help anyway since I couldn't open my mouth any wider then to put a finger in (about 1/2 inch). I was able to get an oral rinse and ambersol to help with the pain and hopefully clear up any infection. It has seemed to help about 15% for a couple of days. Now it doesn't seem to be working anymore and I'm miserable. My jaw only opens about 1/3 of an inch now and the last two days the headache pain has returned behind my eye. The double vision, pressure, and blurryness is a bit worse too. I don't know what to do and am starting to get very depressed. I can't afford any more medical treatment and as it is we don't have any money to pay our mortgage so we may lose our house after Sept 14. I applied to an organization that is supposed to financially help people in the dogshow world who have medical problems but it looks like since I don't have a malignant tumor they won't help. I just don't know what to do and am loath to ask anyone for help since I know everyone has their own problems. I just hope I feel better soon since there is nothing else that I can do to feel better at this time. I've got a lot of stress not being able to work or even help out around the house and I feel horrible, I'd say worse then when I left the hospital. I've even thought about going to the emergency room but can't get to a hospital by myself and that would only cost us more $$. I've already disrupted the lives and work schedules of my husband and mother and can't ask them to take any more time off just to drive me to the doctors. There is so much I need to do around the house and yet I'm afraid to do anything because unless I'm sleeping I feel awful and don't want to make it worse. All I can eat is very soft canned vegetables, masshed potatoes, and sherbert. I suck on popscicles and that makes it feel a bit better but the popscicles are too thick to fit in my mouth since I can't open my jaw very wide. I tried to eat a sandwich but have to flatten and then squish the food between my teeth (not very appetizing). Each day I think that it has to get better, perhaps it is just the nerves healing? If I call Dr Black's office again I will probably only get told that there is nothing they can do again, besides I get the feeling they are busy with other people who are in worse shape then I am. My primary care doctor's office didn't want anything to do with me since I've had brain surgery, and since I don't have a dentist nor dental insurance there is no way any dentist will see me for an emergency, especially since I can't open my mouth! I'm so confused :-( All I wanted was some antibiotics, I know I have an infection of some sort, even if I don't have a temperature. I've tried so hard to be optomistic about this whole thing, but right now I feel like a fool. I can put up a great front, but when I'm alone I know how I really feel. If anyone can spare an extra prayer or bit of Setter Zen I would appreciate it a lot. I had been waiting until I felt better to update the blog but I guess that isn't going to happen any time soon so I thought I would post an update, sorry I'm having a pity-party. I'm so confused about what to do....guess I'll go back to bed.
Sue
Saturday, September 02, 2006
Got My Stitches Out :-)
I'm sorry I haven't been able to update my blog recently, but it is very difficult to do so while at my Mom's house (computer location, incredibly slow dial-up connection, and very poor eyesight being a few reasons).
As this title mentions, I had the stitches removed yesterday - Yahoo! We went to Dr Black's office, leaving the house before 11am and didn't get back home until after 6pm due to the Cape Cod weekend traffic. Considering I hadn't been out of the house for more then about 1 1/2 hours since my surgery, I was completely wiped out and fell asleep as soon as I got home. That was a bit of a bummer because yesterday was my Birthday and I missed most of the calls from my family & friends. Dr Black said that the incision looks great and told us more about the tumor, why the 4 hour surgery ended up taking 8+ hours, why they had a hard time getting me to breath and my heart to beat as I came out of anethesia, and what to expect in the future. He is such a wonderful, caring man and as I left I ended up giving him a big hug. I will post more on the findings when I am able to get home to my own computer, but for now I just wanted to let everyone know that it was a grade 1 tumor as we had hoped for (Yeah!). Speaking of going home...I get to do that tomorrow (Sunday 9/3). I can't wait to see all my Setter "kids". I have never been away from home for more then a few days so this has been really hard. My Mom and Gramma Kelsey have been taking really good care of me, but I'm a pretty independent person and it has been hard for me to be dependent on others.
Thanks again to everyone who has posted comments on my blog, sent emails, cards, and flowers, etc. I never expected such an outpouring of support and it has meant so much to me! I've been taking notes of everything that I have done or gone through and will be posting it all here along with some more pictures, I just ask you to be a bit more patient with me because I tire very easily, get some intense headaches as the nerves are regrowing together, and am having some difficulty with my eyesight (lots of double vision and my left eye is totally blurry when trying to read).
Take care,
Sue
As this title mentions, I had the stitches removed yesterday - Yahoo! We went to Dr Black's office, leaving the house before 11am and didn't get back home until after 6pm due to the Cape Cod weekend traffic. Considering I hadn't been out of the house for more then about 1 1/2 hours since my surgery, I was completely wiped out and fell asleep as soon as I got home. That was a bit of a bummer because yesterday was my Birthday and I missed most of the calls from my family & friends. Dr Black said that the incision looks great and told us more about the tumor, why the 4 hour surgery ended up taking 8+ hours, why they had a hard time getting me to breath and my heart to beat as I came out of anethesia, and what to expect in the future. He is such a wonderful, caring man and as I left I ended up giving him a big hug. I will post more on the findings when I am able to get home to my own computer, but for now I just wanted to let everyone know that it was a grade 1 tumor as we had hoped for (Yeah!). Speaking of going home...I get to do that tomorrow (Sunday 9/3). I can't wait to see all my Setter "kids". I have never been away from home for more then a few days so this has been really hard. My Mom and Gramma Kelsey have been taking really good care of me, but I'm a pretty independent person and it has been hard for me to be dependent on others.
Thanks again to everyone who has posted comments on my blog, sent emails, cards, and flowers, etc. I never expected such an outpouring of support and it has meant so much to me! I've been taking notes of everything that I have done or gone through and will be posting it all here along with some more pictures, I just ask you to be a bit more patient with me because I tire very easily, get some intense headaches as the nerves are regrowing together, and am having some difficulty with my eyesight (lots of double vision and my left eye is totally blurry when trying to read).
Take care,
Sue
Thursday, August 24, 2006
One Week Anniversary
I can not believe it has been 1 week since I had my surgery! Things have been going OK I guess. Today is the first day I've been able to get upstairs at my Mom's house and that is where her computer is. I REALLY appreciate all the well wishes that I have received! I'm pretty wiped out right now but am slowly recovering. I hope to be able to post a bigger update tomorrow or this weekend and I have a number of pictures too. I'm still seeing things with a bit of double vision and my left eyesight is blurry, but at least I can see out of my left eye and it will only get better as all the swelling goes down and I continue to heal. I have just spent about 30 minutes online reading the comments posted here and am going to go take a nap now. Thank you all so much for your support and love...I know it is what helped me be able to get through this surgery and on the road to recovery :-)
Sue
Sue
Sunday, August 20, 2006
Sue Goes Home!
I left the hospital today (see photo of being ready!) -- I’m going home to my Mom’s house. I had a hard time sleeping last night so I’m hoping that by going home I can get my rest and sleep – the woman I’m sharing a room with snored all night long rather loudly. Dr. Black said I’m doing much better than he had expected me to do and even is calling me a “rock star”.
I walked around the hospital and up and down the stairs with the physical therapist who also decided that I could go home.
I had a nice visit from Bette Bryant (see photo) from the Brain TMR list and several phone calls from friends and my family.
I watched NASCAR while waiting for my nurse to give me my release orders -- unfortunately my favorite driver came in 22nd.
I will post something new in a few days.
Sue
Saturday, August 19, 2006
Sue Update
Hi everyone! Kris, my stepmother, is writing this for me. I’m sitting in my hospital room where I can see Fenway Park out my window and I can wave to the Good Year blimp as the Yankees decimate the Red Sox yet again.
I’m doing fine although I do have a huge shiner (see the picture). We’ve taken other pictures that we will post later. I got out of ICU at noon today and will probably be released on Monday or Tuesday to go to my Mom's.
I'm still waiting to get a decent meal. They cut my jaw muscle so eating is a bit challenging. I just looked at the carrots and the hard sandwich that came at lunch today. I’m hoping that I get my macaroni and cheese tonight for dinner.
Dr. Black says he believes he was able to remove all of the tumor and that it doesn’t appear that it was malignant. The pathology report will be available in 1 week. The tumor was a little bigger then Dr. Black thought and that’s why the surgery was longer than anticipated. The good news is that I am able to see out of both eyes, even if it’s two of everything for awhile.
I am in Tower 10C room 59.
Thanks for all the well wishes. I’ll be back in a week or two.
Thursday, August 17, 2006
Susan Survives
Sue is doing fine. She went to surgery at 7 AM today (Thursday) and the surgery began at 9. The tumor was larger than expected and more difficult to extract. Surgery ended about 5 PM and Sue will spend about 24 hours in the ICU. The doctors believe the whole tumor was extracted and that it is benign, but will not know definitively for about a week. She is groggy but coherent. Sue appreciates everyone's positive thoughts.
Wednesday, August 16, 2006
Surgery Tomorrow
Well this is it. We are leaving in a little while to head up to Boston. Hard to believe that tomorrow at this time the surgery will be wrapping up and I will be on the road to recovery :-)
This morning Frank's cell phone rang at 6:15am as he was getting ready to leave for work. It was his boss telling him to take the day off WITH PAY so he could be with me the day before my surgery. That was so-o-o nice! Now we can go to the hotel together instead of Frank trying to find his way up there in the dark (he hasn't been up to Brigham & Women's before). This morning I realized that this will be the first time that we will have stayed in a hotel room together since our honeymoon 17+ years ago, that is pretty pathetic.
Everythings packed, fish tank water changed, and all dog crates and bowls labeled for Gary, Frank's good friend who will be taking care of the dogs that are still here. Gary is on his way over now to go over everything one last time.
So now is time to fulfill the title of my blog...Tomorrow Dr Black will go into my orbit and then in a week or so I will be back. Thanks to everyone who has sent well wishes, called, and especially to those of you who are puppy sitting my Setter kids for me! As of last night I had received 156 emails from around the world wishing me luck, I haven't added the notes I've received today to the list yet. When I get back I will try to chronicle the whole experience so if anyone else ever has to go through the same thing they will now what to expect.
Take care all, love ya!
Sue
This morning Frank's cell phone rang at 6:15am as he was getting ready to leave for work. It was his boss telling him to take the day off WITH PAY so he could be with me the day before my surgery. That was so-o-o nice! Now we can go to the hotel together instead of Frank trying to find his way up there in the dark (he hasn't been up to Brigham & Women's before). This morning I realized that this will be the first time that we will have stayed in a hotel room together since our honeymoon 17+ years ago, that is pretty pathetic.
Everythings packed, fish tank water changed, and all dog crates and bowls labeled for Gary, Frank's good friend who will be taking care of the dogs that are still here. Gary is on his way over now to go over everything one last time.
So now is time to fulfill the title of my blog...Tomorrow Dr Black will go into my orbit and then in a week or so I will be back. Thanks to everyone who has sent well wishes, called, and especially to those of you who are puppy sitting my Setter kids for me! As of last night I had received 156 emails from around the world wishing me luck, I haven't added the notes I've received today to the list yet. When I get back I will try to chronicle the whole experience so if anyone else ever has to go through the same thing they will now what to expect.
Take care all, love ya!
Sue
Tuesday, August 15, 2006
Hospital Schedule and Information
Today is the day before we leave to go up to Boston for my surgery. I can't believe how fast the time has flown by! It is only 60 miles to the hospital from our house but since I have to be at the hospital at 5:30am on Thursday morning we decided to get a room at the Best Western Hotel that is 100yds from Brigham & Women's Hospital. My Mom will then stay at the hotel Thursday night so she will be with me on Friday too.
My surgery is scheduled for 7:30 am Thursday Aug. 17. It will be 4 to 6 hours long. Frank and my Mom will be able to be with me until they wheel me away to the operating room. They will then be taken to the Bretholtz Center for Patients and Families in the hospital, which is right behind the main information desk at the 75 Francis St entrance. They will be given a beeper (like they give you when you wait at a restaurant) so they won't have to stay in the family center if they would like to go back to the hotel, get something to eat, or take a walk. When there is an update during or after the surgery the beeper will vibrate. All they have to do is go to the Family Center desk and they will be taken to a small cubicle and given a phone where they can talk to Dr Black. Once I am in recovery/NICU the beeper will buzz again and they will be taken to see me. I have talked to a couple of people who have had similar surgeries and they said that their family wasn't updated until the surgery was over, so I hope people don't get too anxious waiting for an update. Once my Mom has heard anything she will call my Dad and he will be updating this blog. He is flying home on Thursday but will have his laptop with him so the updates should be posted fairly quickly once he receives them.
You can also call the hospital for an update on my condition, "Family members at home can call (617) 732-7440".
People have asked for the addresses where they could send a card. For anyone wishing to send something to the hospital I should be there from 8/18 thru 8/22 at least. Here is the address:
Susan Linhares
room number (call 1-617-732-5164 if you don't know the room number)
Brigham and Women's Hospital
75 Francis St.
Boston, MA 02113
When I get out of the hospital I will be staying at my Mom's the first week:
Susan Linhares
c/o Diane Carhart
11 Jeannes Way
Forestdale, MA 02644
For anyone who is planning on visiting me the hospital is located at 75 Francis St in Boston. All I know at this time is that I will be in a room on the 10th floor which is the Neuro floor. When you enter at 75 Francis St there is a large information desk right in front of you and they will help you find my room. We usually use Route 9 to the west of Boston to get there instead of going up 93 into Boston. It saves a bit of traffic aggravation. Here are directions from the hospital website for anyone who is traveling from the South. More directions (and other info for visitors or about the hospital) can be found on the B&W website http://www.brighamandwomens.org.
Take Route 128 (I-95) north. Take Route 9 east for six miles. Take a left onto Brookline Avenue (Brook House Condominiums will be on right). At third set of lights, turn right onto Francis Street. The hospital is one block down on the left.
Phone calls are allowed but it has been stressed that I keep them to a minimum since this type of surgery causes extreme fatigue. Also, since there are two beds in each room I wouldn't want to bother my roommate with a constantly ringing phone. If you feel that you would like to call the main phone number at the hospital is on their website (link is above).
Well I think that is all for now. If there is any info that I may have missed just write a comment or email me and I will add to this post.
My surgery is scheduled for 7:30 am Thursday Aug. 17. It will be 4 to 6 hours long. Frank and my Mom will be able to be with me until they wheel me away to the operating room. They will then be taken to the Bretholtz Center for Patients and Families in the hospital, which is right behind the main information desk at the 75 Francis St entrance. They will be given a beeper (like they give you when you wait at a restaurant) so they won't have to stay in the family center if they would like to go back to the hotel, get something to eat, or take a walk. When there is an update during or after the surgery the beeper will vibrate. All they have to do is go to the Family Center desk and they will be taken to a small cubicle and given a phone where they can talk to Dr Black. Once I am in recovery/NICU the beeper will buzz again and they will be taken to see me. I have talked to a couple of people who have had similar surgeries and they said that their family wasn't updated until the surgery was over, so I hope people don't get too anxious waiting for an update. Once my Mom has heard anything she will call my Dad and he will be updating this blog. He is flying home on Thursday but will have his laptop with him so the updates should be posted fairly quickly once he receives them.
You can also call the hospital for an update on my condition, "Family members at home can call (617) 732-7440".
People have asked for the addresses where they could send a card. For anyone wishing to send something to the hospital I should be there from 8/18 thru 8/22 at least. Here is the address:
Susan Linhares
room number (call 1-617-732-5164 if you don't know the room number)
Brigham and Women's Hospital
75 Francis St.
Boston, MA 02113
When I get out of the hospital I will be staying at my Mom's the first week:
Susan Linhares
c/o Diane Carhart
11 Jeannes Way
Forestdale, MA 02644
For anyone who is planning on visiting me the hospital is located at 75 Francis St in Boston. All I know at this time is that I will be in a room on the 10th floor which is the Neuro floor. When you enter at 75 Francis St there is a large information desk right in front of you and they will help you find my room. We usually use Route 9 to the west of Boston to get there instead of going up 93 into Boston. It saves a bit of traffic aggravation. Here are directions from the hospital website for anyone who is traveling from the South. More directions (and other info for visitors or about the hospital) can be found on the B&W website http://www.brighamandwomens.org.
Take Route 128 (I-95) north. Take Route 9 east for six miles. Take a left onto Brookline Avenue (Brook House Condominiums will be on right). At third set of lights, turn right onto Francis Street. The hospital is one block down on the left.
Phone calls are allowed but it has been stressed that I keep them to a minimum since this type of surgery causes extreme fatigue. Also, since there are two beds in each room I wouldn't want to bother my roommate with a constantly ringing phone. If you feel that you would like to call the main phone number at the hospital is on their website (link is above).
Well I think that is all for now. If there is any info that I may have missed just write a comment or email me and I will add to this post.
Monday, August 14, 2006
Lets Not Rush Things
I received a phone call at about 4pm today from Heather, Dr Black's Surgical Coordinator. She told me that Dr Black had a cancellation and they wanted to do the surgery tomorrow morning! What?? I explained that I didn't think it would be possible since my family had all been planning on it being Thursday taking time off from work and flying in to visit. I also have an appt with my orthopedic surgeon who wants to make sure my elbow is comfortable while I'm in the hospital. Heather said it was totally up to me but they wanted to offer having the surgery a couple of days early. So I told her that I would stick to the original date and see them Thursday morning.
I've been planning on Thursday and still have a number of things to take care of before I head up to Boston Wednesday afternoon. That phone call sure was a surprise, I'm glad I didn't have to change the surgery date!
Next week at this time I might be able to go home to my Mom's :-)
I've been planning on Thursday and still have a number of things to take care of before I head up to Boston Wednesday afternoon. That phone call sure was a surprise, I'm glad I didn't have to change the surgery date!
Next week at this time I might be able to go home to my Mom's :-)
Sunday, August 13, 2006
Like Mother, Like Daughter?
When my mother was a teenager, back in 1957, she fell off her horse onto pavement and fractured her skull (a dog spooked the horse). I believe it was called a double basal compound fracture. She was in a coma for several weeks. They had to remove the bones covering the back of her skull due to both the fractures and swelling, and they had no idea if she would make it. Well, obviously she did :-) She has lived almost 50 years with a plate covering the back of her skull and has been on dilantin all that time to prevent seizures.
Now it is about 50 years later and I will be having surgery to remove this tumor along with a couple of bones in my head that will be replaced with titanium and I will be on dilantin. I know my Mom is worried about me (as are all my family and friends), but wonder, is this payback for the worry she put her mother through way back then ;-) Kind of like the old saying "Just wait until you have a daughter/son just like you" (lol)
Several people have called and emailed to ask if I was nervous or worried about the upcoming surgery. I'm really not worried too much, especially compared to all my Mom went through and survived...and that was 50 years ago at St Lukes Hospital in New Bedford, MA (shudder). I have the best doctors and Hospital, will have the surgery with Dr Black using an interoperative MRI, and they only had an xray for my Mom's surgery! I figure that other then a headache this has to be better then abdominal surgery since I'll be able to eat sooner and won't have staples from hip to hip. Mostly any anxiety I'm having is with the unknown. I'm the kind of person that checks out everything before a vacation and doesn't always like unexpected surprises. I also like to be in control a bit too much at times and tend to hate the idea of people having to change their lives to take care of me. With this surgery I will not be in control of anything for about 2 weeks or longer afterward so that is bothering me just a tad. I tend to make a lousy patient and can give good advice at times, but rarely listen to myself (grin).
Next week at this time I will be in my regular room getting stronger every day. Since there are two people to a room I hope I have someone nice and not someone who thinks their husband is hiding under the bed (you had to be there, lol).
Now it is about 50 years later and I will be having surgery to remove this tumor along with a couple of bones in my head that will be replaced with titanium and I will be on dilantin. I know my Mom is worried about me (as are all my family and friends), but wonder, is this payback for the worry she put her mother through way back then ;-) Kind of like the old saying "Just wait until you have a daughter/son just like you" (lol)
Several people have called and emailed to ask if I was nervous or worried about the upcoming surgery. I'm really not worried too much, especially compared to all my Mom went through and survived...and that was 50 years ago at St Lukes Hospital in New Bedford, MA (shudder). I have the best doctors and Hospital, will have the surgery with Dr Black using an interoperative MRI, and they only had an xray for my Mom's surgery! I figure that other then a headache this has to be better then abdominal surgery since I'll be able to eat sooner and won't have staples from hip to hip. Mostly any anxiety I'm having is with the unknown. I'm the kind of person that checks out everything before a vacation and doesn't always like unexpected surprises. I also like to be in control a bit too much at times and tend to hate the idea of people having to change their lives to take care of me. With this surgery I will not be in control of anything for about 2 weeks or longer afterward so that is bothering me just a tad. I tend to make a lousy patient and can give good advice at times, but rarely listen to myself (grin).
Next week at this time I will be in my regular room getting stronger every day. Since there are two people to a room I hope I have someone nice and not someone who thinks their husband is hiding under the bed (you had to be there, lol).
Friday, August 11, 2006
Five Days Before Surgery
The days are seeming to fly by now as it gets closer to surgery day. This afternoon I drove to N. Stonington, CT to meet Karol P, who will be taking care of my youngest Gordon Setter "kids", 12 month olds Heater & Calleigh. It was so hard to have them go, but I know it is for the best. Driving home it took a bit longer then the normal 1 hour 20 minutes due to several accidents on 95N & 195E. By the time I got home I was very aware of one of the reasons I'm having this surgery. I had an incredible headache behind my left eye. Extra Strength Tylenol has only made it subside by half and that is the only pain reliever I'm allowed to have. I finished my dog chores so I can get to bed early tonight (early for me is about midnight LOL). I've been getting these headaches for a couple of years actually and used to tell Frank I thought my van must have an exhaust leak because I'd usually get them after being at a dog show and driving home in my van. I know now, after talking to the Drs, that running around the ring was making pressure on the tumor and then the driving and paying attention to the road would strain the muscles behind my eye near the tumor and further anger it, hence the headaches...Frank kept telling me the exhaust on the van was fine, I guess he was right, especially since I didn't use my van today (LOL).
I've received some very nice cards from friends and also a couple of folks that I have never met but we belong to the same email list or forum. What a nice, thoughtful surprise! The cards and emails are very welcome and appreciated because it sure helps to not feel afraid or alone when I know people are thinking of me :-)
Next week at this time I will be out of ICU and in a regular patient room at the hospital.
I've received some very nice cards from friends and also a couple of folks that I have never met but we belong to the same email list or forum. What a nice, thoughtful surprise! The cards and emails are very welcome and appreciated because it sure helps to not feel afraid or alone when I know people are thinking of me :-)
Next week at this time I will be out of ICU and in a regular patient room at the hospital.
Thursday, August 10, 2006
Pre-Op Appointment
One week before surgery, aka the day it starts to seem very real. Today my Mom and I went up to Brigham & Women's Hospital in Boston, MA for my pre-op tests; blood, urine, chest xray & EKG (I think it was an EKG, they hooked my up with a number of wires and checked my heart). I also talked to the pre-op nurse, who took all my information, and an anesthesiologist. That took about an hour and a half. Then we moved to Dr Black's office to speak to his nurse Nancy. She was very nice and answered all our questions. We were also able to get an authorization letter so we could get the patient discount at the hotel. I was given a number of more handouts and a pamphlet titled "5 Steps to Surgery" that has what to expect while at the hospital after surgery. Once we had finished with the appts. we were hungry and decided to try out the hospital cafeteria. The food was really good! My Mom had broiled scrod with rice and I had beef stew. They have valet parking for patients so I went to pay and before we knew it the car was in front of the hospital. $12.00 for six hours valet parking was so much better then the $23.00 for two and a half hours for regular parking at Mass Eye and Ear! We drove by the hotel we will be staying in the night before and noticed that they have a food court on the ground floor with, among other restaurants, a Dunkin' Donuts for Mom's coffee, Orange Julius/Dairy Queen for Frank, and Beantown Burrito for me :-)
Some of the things I found out today....
- The surgery is called a left frontal craniotomy.
- My hospital room will be on the 10th floor of the "Tower" (the Neuroscience floor) once I'm out of ICU.
- I was given a special surgical soap called Hibiclens to wash with two days before, the day before, and the morning of the surgery.
- Frank and my Mom will be given a beeper when I am admitted prior to surgery. That way they will be beeped when there is an update during my surgery. They will be able to go back to the hotel for a bit or get some breakfast and not worry about staying in the "family room" at the hospital. Speaking of the "family room" it is a really nice place for families and friends to wait while someone is in surgery. It has nice comfy chairs, lots of TVs, computers, a library, cubicles or private rooms if you want to wait in privacy, and is right under the cafeteria and patient rooms.
- Once I have my IV in Frank and my Mom will be able to stay with me until I'm wheeled to the operating room. They will then see me again in 6 hours when I get to ICU (I'll be in ICU for about 24 hrs after the surgery). Dr Black has the operating room booked for 6 hours for my surgery.
- I signed a paper donating what is left of the tumor after the pathology test and two vials of blood to a research project Dr Black is undertaking. I figured I didn't want it back so he might as well make good use of it (LOL).
- During the surgery they will cut my left jaw muscle (why?) so eating will be difficult for a while. When I wake up I will have 2 IVs, an arterial line, catheter, oxygen, the compression boots that prevent blod clots, and lots of beeping and buzzing machines all around me.
- When I go home I'll be on the following medications: anti-seizure because they will be working near the front part of my brain (dilantin, like my Mom has taken for years), steroids to help prevent swelling (decadron, 1 pill equals 10 prednisone from what I was told), pepcid to help prevent damage from the steroids, pain meds, and a laxative because bowel movements put pressure on your head and that would be very bad as I was told.
- I will have to ride in the back seat of any car that has air bags for four weeks because if I was to get an air bag in the face it would not be a good thing. As Frank says, now I can be a real back seat driver (LOL). I also won't be able to drive for about 4 weeks.
- Everyone at Brigham & Women's Hospital is super friendly!
So it looks like everything is all set. I have a few more doctors appointments and then next week at this time it will be over and I'll be in ICU being pestered by nurses every hour or so.
Some of the things I found out today....
- The surgery is called a left frontal craniotomy.
- My hospital room will be on the 10th floor of the "Tower" (the Neuroscience floor) once I'm out of ICU.
- I was given a special surgical soap called Hibiclens to wash with two days before, the day before, and the morning of the surgery.
- Frank and my Mom will be given a beeper when I am admitted prior to surgery. That way they will be beeped when there is an update during my surgery. They will be able to go back to the hotel for a bit or get some breakfast and not worry about staying in the "family room" at the hospital. Speaking of the "family room" it is a really nice place for families and friends to wait while someone is in surgery. It has nice comfy chairs, lots of TVs, computers, a library, cubicles or private rooms if you want to wait in privacy, and is right under the cafeteria and patient rooms.
- Once I have my IV in Frank and my Mom will be able to stay with me until I'm wheeled to the operating room. They will then see me again in 6 hours when I get to ICU (I'll be in ICU for about 24 hrs after the surgery). Dr Black has the operating room booked for 6 hours for my surgery.
- I signed a paper donating what is left of the tumor after the pathology test and two vials of blood to a research project Dr Black is undertaking. I figured I didn't want it back so he might as well make good use of it (LOL).
- During the surgery they will cut my left jaw muscle (why?) so eating will be difficult for a while. When I wake up I will have 2 IVs, an arterial line, catheter, oxygen, the compression boots that prevent blod clots, and lots of beeping and buzzing machines all around me.
- When I go home I'll be on the following medications: anti-seizure because they will be working near the front part of my brain (dilantin, like my Mom has taken for years), steroids to help prevent swelling (decadron, 1 pill equals 10 prednisone from what I was told), pepcid to help prevent damage from the steroids, pain meds, and a laxative because bowel movements put pressure on your head and that would be very bad as I was told.
- I will have to ride in the back seat of any car that has air bags for four weeks because if I was to get an air bag in the face it would not be a good thing. As Frank says, now I can be a real back seat driver (LOL). I also won't be able to drive for about 4 weeks.
- Everyone at Brigham & Women's Hospital is super friendly!
So it looks like everything is all set. I have a few more doctors appointments and then next week at this time it will be over and I'll be in ICU being pestered by nurses every hour or so.
Tuesday, August 08, 2006
Feelings and Thoughts
They say that you go through several stages when confronted with news of cancer, tumor, or other life-changing situation; shock, denial, anger, grief, acceptance, etc. I clearly remember the shock when at 8:30am the morning after having the MRI I received an unexpected phone call saying bluntly "There was a mass found on the MRI". I sat for a minute and then called my husband Frank and just told him bluntly, not considering the fact that he was at work operating some sort of heavy machinery. I then called my Mom at work and probably ruined the rest of her day. Next up was a call to my Dad and a good friend, Larry. I don't think that I was scared, I think I was in a state of disbelief....I feel fine how can I have a tumor in my head? Never in my wildest dreams did I think that this would happen to me.
After that first day I have tackled this from a research viewpoint. I have scoured the internet looking for websites, message boards, forums, etc that have information on meningiomas. Some of that research has paid off in that I am being seen by one of the most internationally respected Neurosurgeons at a top notch brain tumor center and it is only about 60 miles from my home. I have also met via the internet a number of people who have a similar tumor, have had the same Doctor or hospital, or are newly diagnosed. It makes me feel good to be able to pass along the info I have compiled to people who are also just starting this journey.
One week from today is the last full day I will spend at home since we will be heading up to Boston the day before my surgery. I can start to hear the days ticking down in my head. I know from my last surgery, which was scheduled 6 weeks before the actual operation, that the waiting is definately the hardest part. The day after tomorrow I will be at Brigham & Women's Hospital for pre-op testing and have been told to expect to be there for 4 to 6 hours. I'm sure after that point the reality that in slightly less the one week I will be undergoing a major surgery on my head will finally hit in. People have told me that I am handling this better then they would, that I'm amazing and an inspiration for posting a bit of the research I've found and not falling apart. I think they all underestimate themselves. In the past I've fought with depression and anxiety and never would have guessed that I would be so calm and assured. When I first heard the diagnosis I was very afraid that I might go "to the dark side". I have had two or three mini crying breakdowns but those have been brief and out of frustration (my dentist problem or the person who thought I was looking for sympathy). Mostly I am looking at this as a positive thing which I know may sound strange. I think a good portion of that has to do with the fact that I tend to be proactive in my health care and always try to find the best doctor that is available. I am so confident in Dr Black and actually all the doctors I have seen that I have only the slightest bit of apprehension. I'm trying to focus on the fact that this tumor was found by accident before it could do much damage or grow to the point that it can't be removed, thinking positive instead of asking "why me?". Asking why me leads to self pity which leads to depression and I'm trying hard not to go there, it is not a good place, especially since I totally plan to beat this thing so it doesn't come back! Instead I continue to focus on things like the fact that I like to wear hats and scarves so this gives me a reason to buy a few new ones...another positive thing :-)
After that first day I have tackled this from a research viewpoint. I have scoured the internet looking for websites, message boards, forums, etc that have information on meningiomas. Some of that research has paid off in that I am being seen by one of the most internationally respected Neurosurgeons at a top notch brain tumor center and it is only about 60 miles from my home. I have also met via the internet a number of people who have a similar tumor, have had the same Doctor or hospital, or are newly diagnosed. It makes me feel good to be able to pass along the info I have compiled to people who are also just starting this journey.
One week from today is the last full day I will spend at home since we will be heading up to Boston the day before my surgery. I can start to hear the days ticking down in my head. I know from my last surgery, which was scheduled 6 weeks before the actual operation, that the waiting is definately the hardest part. The day after tomorrow I will be at Brigham & Women's Hospital for pre-op testing and have been told to expect to be there for 4 to 6 hours. I'm sure after that point the reality that in slightly less the one week I will be undergoing a major surgery on my head will finally hit in. People have told me that I am handling this better then they would, that I'm amazing and an inspiration for posting a bit of the research I've found and not falling apart. I think they all underestimate themselves. In the past I've fought with depression and anxiety and never would have guessed that I would be so calm and assured. When I first heard the diagnosis I was very afraid that I might go "to the dark side". I have had two or three mini crying breakdowns but those have been brief and out of frustration (my dentist problem or the person who thought I was looking for sympathy). Mostly I am looking at this as a positive thing which I know may sound strange. I think a good portion of that has to do with the fact that I tend to be proactive in my health care and always try to find the best doctor that is available. I am so confident in Dr Black and actually all the doctors I have seen that I have only the slightest bit of apprehension. I'm trying to focus on the fact that this tumor was found by accident before it could do much damage or grow to the point that it can't be removed, thinking positive instead of asking "why me?". Asking why me leads to self pity which leads to depression and I'm trying hard not to go there, it is not a good place, especially since I totally plan to beat this thing so it doesn't come back! Instead I continue to focus on things like the fact that I like to wear hats and scarves so this gives me a reason to buy a few new ones...another positive thing :-)
Monday, August 07, 2006
More About Meningiomas
Here is a bit more about Meningiomas and brain tumors:
Between 1987 thru 2003 Dr Peter Black preformed over 1600 Brain tumor surgeries at Brigham & Women's Hospital.
Meningiomas are one of the more common primary brain tumors but are very underfunded. Because of this very little is known in regard to causes or cure. Very little research has been done on finding a drug therapy that could help since (and because) the first course of action is usually surgery. Nationwide, about 266,000 people are living with benign brain tumors, of which meningiomas are by far the most common. And the five-year survival rate after surgery for meningioma, do to recurrance or location, is lower than that for breast cancer and yet breast cancer is very well funded. Each year more of the population is diagnosed with a brain tumor, 27% will be meningiomas and yet there is a stigma to the term brain tumor or brain cancer. Sen. Arlen Specter of Pennsylvania underwent brain surgery in 1993 for a meningioma, and later had radiation treatment for a recurrence. Elizabeth Taylor underwent surgery for a meningioma also. "Why do public figures who have a meningioma/brain tumor stay so quiet?''
The following is from:
Brain Tumor Guide for the Newly Diagnosed
Version 2.5
Updated 4/19/2005
Copyright 2005 Musella Foundation
Virtualtrials.com
Every day, an estimated fifty adults will be diagnosed with a primary brain tumor (starting in the brain), and many more will be diagnosed with a cancer that has spread to the brain from someplace else in the body, such as the lung or breast. Additionally, thousands of parents annually will hear these devastating two words – brain tumor – in
regards to their child. There is no known cause of tumors starting in the brain and for many no known "cure." However, there are certainly ways of extending your life and improving the quality of that life.
Brain tumors are described by where they are located in the brain and what kind of cell they started from. Primary tumors begin in the brain, while Secondary tumors are caused by tumor (cancer) cells that spread to the brain from another "primary" source in the body, such as breast or lung cancer. Primary brain tumors are classified (diagnosed), in part, by the type of cell it originates from. For example; Astrocytomas come from astrocytes, oligodendrogliomas from oligodendrocytes, meningiomas from meningeal cells and medulloblastomas from medulloblasts, just to name a few.
When dealing with brain tumors, the word "benign" is a little misleading. It implies that the tumor is not dangerous. Unfortunately, the brain is enclosed in a rigid container (the skull) that allows no space for a tumor mass to grow. As a tumor (even a "benign" tumor) grows, it builds up the intracranial pressure and compresses everything around it – which
can lead to neurological problems and even death. Luckily, there has been a lot of progress in the treatment of the "benign" brain tumors. One type, the acoustic neuroma, used to be incurable and usually fatal. Now, it can be cured in over 95% of the patients, sometimes with a relatively simple radiation procedure.
Are brain tumors the same as brain cancer?
This is controversial. There are arguments for both sides: some argue that a brain tumor rarely spreads outside of the brain, so it isn’t "cancer". Others argue that it has the potential to grow and be deadly, so it is. I feel that brain tumors should be considered "Brain Cancer".
Neurosurgery
Surgery is performed to improve neurological function, confirm your diagnosis by means of a biopsy ("open biopsy" or "Stereotactic biopsy"), or to completely ("total resection") or partially ("sub-total resection" or "debulking") remove the tumor. With a resection, you also get a biopsy of the sample removed. You should ask your surgeon for a copy of the pathology report. You can easily (but it may be expensive – check first) get a second opinion on the reading of the pathology slides. There is a lot of interpretation put into the reading of the slides, and this is the single most important test you will ever have in your life, so it may be worth the money to double check it. For some benign tumors, surgery may be curative. For the malignant tumors, surgery may relieve symptoms of too much pressure in the brain and allow time for other treatments to work. Malignant tumors can grow so fast that without surgery, other treatments might not have the time to work. Surgery is also an opportunity to try a treatment that requires direct access to the brain. Surgery is performed by a neurosurgeon; however, a general neurosurgeon may not have adequate experience in the removal of brain tumors, and may be less informed regarding current treatment therapies. Most neurosurgeons do not see many brain tumors. You need to find one that specializes in brain tumors. Check out their website and make sure that "brain tumors" is listed as one of their main areas of expertise. An "expert" is defined as one who performs a minimum of twenty-five per year; typically these neurosurgeons are associated at some level with major brain tumor centers. Studies indicate that major brain tumor centers and/or surgical teams that perform fifty or more surgeries a year exhibit better survival rates and fewer complications. "Brain surgery" sounds like a very scary thing. It is. But as previously mentioned, it is now much safer and easier than ever. Advances in 3-d computer guided imaging, intraoperative imaging with ultrasound or MRI, and small endoscopes allow surgeons to remove many tumors that used to be considered inoperable. There are still some tumors that because of the size or location are too dangerous to remove, but the limits are shrinking every year. If you are told that your tumor is inoperable, get another opinion.
Between 1987 thru 2003 Dr Peter Black preformed over 1600 Brain tumor surgeries at Brigham & Women's Hospital.
Meningiomas are one of the more common primary brain tumors but are very underfunded. Because of this very little is known in regard to causes or cure. Very little research has been done on finding a drug therapy that could help since (and because) the first course of action is usually surgery. Nationwide, about 266,000 people are living with benign brain tumors, of which meningiomas are by far the most common. And the five-year survival rate after surgery for meningioma, do to recurrance or location, is lower than that for breast cancer and yet breast cancer is very well funded. Each year more of the population is diagnosed with a brain tumor, 27% will be meningiomas and yet there is a stigma to the term brain tumor or brain cancer. Sen. Arlen Specter of Pennsylvania underwent brain surgery in 1993 for a meningioma, and later had radiation treatment for a recurrence. Elizabeth Taylor underwent surgery for a meningioma also. "Why do public figures who have a meningioma/brain tumor stay so quiet?''
The following is from:
Brain Tumor Guide for the Newly Diagnosed
Version 2.5
Updated 4/19/2005
Copyright 2005 Musella Foundation
Virtualtrials.com
Every day, an estimated fifty adults will be diagnosed with a primary brain tumor (starting in the brain), and many more will be diagnosed with a cancer that has spread to the brain from someplace else in the body, such as the lung or breast. Additionally, thousands of parents annually will hear these devastating two words – brain tumor – in
regards to their child. There is no known cause of tumors starting in the brain and for many no known "cure." However, there are certainly ways of extending your life and improving the quality of that life.
Brain tumors are described by where they are located in the brain and what kind of cell they started from. Primary tumors begin in the brain, while Secondary tumors are caused by tumor (cancer) cells that spread to the brain from another "primary" source in the body, such as breast or lung cancer. Primary brain tumors are classified (diagnosed), in part, by the type of cell it originates from. For example; Astrocytomas come from astrocytes, oligodendrogliomas from oligodendrocytes, meningiomas from meningeal cells and medulloblastomas from medulloblasts, just to name a few.
When dealing with brain tumors, the word "benign" is a little misleading. It implies that the tumor is not dangerous. Unfortunately, the brain is enclosed in a rigid container (the skull) that allows no space for a tumor mass to grow. As a tumor (even a "benign" tumor) grows, it builds up the intracranial pressure and compresses everything around it – which
can lead to neurological problems and even death. Luckily, there has been a lot of progress in the treatment of the "benign" brain tumors. One type, the acoustic neuroma, used to be incurable and usually fatal. Now, it can be cured in over 95% of the patients, sometimes with a relatively simple radiation procedure.
Are brain tumors the same as brain cancer?
This is controversial. There are arguments for both sides: some argue that a brain tumor rarely spreads outside of the brain, so it isn’t "cancer". Others argue that it has the potential to grow and be deadly, so it is. I feel that brain tumors should be considered "Brain Cancer".
Neurosurgery
Surgery is performed to improve neurological function, confirm your diagnosis by means of a biopsy ("open biopsy" or "Stereotactic biopsy"), or to completely ("total resection") or partially ("sub-total resection" or "debulking") remove the tumor. With a resection, you also get a biopsy of the sample removed. You should ask your surgeon for a copy of the pathology report. You can easily (but it may be expensive – check first) get a second opinion on the reading of the pathology slides. There is a lot of interpretation put into the reading of the slides, and this is the single most important test you will ever have in your life, so it may be worth the money to double check it. For some benign tumors, surgery may be curative. For the malignant tumors, surgery may relieve symptoms of too much pressure in the brain and allow time for other treatments to work. Malignant tumors can grow so fast that without surgery, other treatments might not have the time to work. Surgery is also an opportunity to try a treatment that requires direct access to the brain. Surgery is performed by a neurosurgeon; however, a general neurosurgeon may not have adequate experience in the removal of brain tumors, and may be less informed regarding current treatment therapies. Most neurosurgeons do not see many brain tumors. You need to find one that specializes in brain tumors. Check out their website and make sure that "brain tumors" is listed as one of their main areas of expertise. An "expert" is defined as one who performs a minimum of twenty-five per year; typically these neurosurgeons are associated at some level with major brain tumor centers. Studies indicate that major brain tumor centers and/or surgical teams that perform fifty or more surgeries a year exhibit better survival rates and fewer complications. "Brain surgery" sounds like a very scary thing. It is. But as previously mentioned, it is now much safer and easier than ever. Advances in 3-d computer guided imaging, intraoperative imaging with ultrasound or MRI, and small endoscopes allow surgeons to remove many tumors that used to be considered inoperable. There are still some tumors that because of the size or location are too dangerous to remove, but the limits are shrinking every year. If you are told that your tumor is inoperable, get another opinion.
A Similar Surgery
I was sent a link to a website that describes a similar surgery to what I will have. This surgery is performed in Canada with a different Neurosurgeon. The tumor location is not the same as for me so once they open this person's skull the surgery is a bit different, but I've been told the tumor type and general opening, closing, and removal procedures are the same. Since a few people have asked what the surgery involved I am posting the link here:
http://www.eye.net/eye/issue/issue_02.24.00/news/tator.php
http://www.eye.net/eye/issue/issue_02.24.00/news/tator.php
Sunday, August 06, 2006
Starting To Get Ready
It dawned on my today that since I will be going to my Mom's house when I get out of hospital I will need to pack a bag for Frank to give to her. So I brought my suitcase downstairs along with a zippered LL Bean bag for the things I'll need while in the hospital. I started putting a couple of things together that I didn't want to forget, and before I knew it I had both the suitcase and bag packed and ready. I put them in the other room and have one less thing to worry about.
I had my hair cut a couple of days ago to make it easier to get the "crud" out that I hear they leave in your hair after surgery. Since I was told I couldn't wash my hair for 2 weeks (yuck!) I thought if it was shorter it may be easier to get the crud out. It also won't be hot around my neck. For the first time since I was about 4 or 5 years old my hair is above my shoulders and it seems strange. It doesn't look bad though and since they will be shaving a 1 to 1.5 inch along my hairline for the incision it looks better then it will (LOL). I also bought a few cotton hats and scarves to wear until the shaved spot grows back.
10 more days and I have so much more to do....
I had my hair cut a couple of days ago to make it easier to get the "crud" out that I hear they leave in your hair after surgery. Since I was told I couldn't wash my hair for 2 weeks (yuck!) I thought if it was shorter it may be easier to get the crud out. It also won't be hot around my neck. For the first time since I was about 4 or 5 years old my hair is above my shoulders and it seems strange. It doesn't look bad though and since they will be shaving a 1 to 1.5 inch along my hairline for the incision it looks better then it will (LOL). I also bought a few cotton hats and scarves to wear until the shaved spot grows back.
10 more days and I have so much more to do....
Thursday, August 03, 2006
Home Alone
I've had a number of surgeries over the years and feel I have a fairly good idea of what my surgery and stay in the hospital will be like. I figured that while I would probably have a heck of a headache this wouldn't be as bad as being cut across the abdomen, through muscles, from hip to hip with a bunch of surgical staples as far as being able to get up and walk around. I knew I would get tired easily but thought that I would be able to make it to the kitchen or bathroom since our house is small and I won't have any stairs to worry about. My plan when I came home from the hospital was for my husband Frank to be home the first day and then he would need to go back to work. I would have someone come in the AM to let my dogs out, come back around noon to check on me and water or bring in the dogs (depending on weather), and then Frank would be home from work around 4 to 6pm. I'd stay on the daybed in the living room and have a cooler near the bed with snacks and drinks. My bathroom is about 20 steps away. This is what we did for my last surgery and it worked out fine.
I have since found out that this is not a good idea. I have been told by a number of people that I need someone with me 24/7 for at least the first week or two and preferably the first 4 weeks. As I considered how I was going to be able to have someone with me all the time (and how bored they would be while I slept) I realized that there was no one that I knew that could come here without being severely inconvenienced. I really didn't think it was a problem for me to be home alone for parts of the day but one person reminded me that I don't have any neighbors, the closest house being about 1/2 mile away through the woods. There is a slight chance of seizure, losing consciousness, or other need for emergency care, and I was also told that I would have dizziness and nausea when standing. So after a phone call to my Mom I will be going to her house (on Cape Cod, about 25 miles from my house) and my Grandma K will stay there to take care of me when my Mom goes to work. Mom is using up all her vacation days the week that I'll be in the hospital. I'll stay there a week or until I feel I can be on my own. On one hand I am grateful to have a nice place to stay and someone to take care of me, the other hand is a bit sad that I will be away from home for about 2 weeks. I'm going to miss being there, and especially Pumba (my Gordon Setter Bestfriend). I know she is going to be upset with me gone for that long. She gets anxious when I go to the store! I told Frank and my Mom that they have to drive me home before I go to her house when I get out of the hospital...I don't think that went over to well (lol).
I have since found out that this is not a good idea. I have been told by a number of people that I need someone with me 24/7 for at least the first week or two and preferably the first 4 weeks. As I considered how I was going to be able to have someone with me all the time (and how bored they would be while I slept) I realized that there was no one that I knew that could come here without being severely inconvenienced. I really didn't think it was a problem for me to be home alone for parts of the day but one person reminded me that I don't have any neighbors, the closest house being about 1/2 mile away through the woods. There is a slight chance of seizure, losing consciousness, or other need for emergency care, and I was also told that I would have dizziness and nausea when standing. So after a phone call to my Mom I will be going to her house (on Cape Cod, about 25 miles from my house) and my Grandma K will stay there to take care of me when my Mom goes to work. Mom is using up all her vacation days the week that I'll be in the hospital. I'll stay there a week or until I feel I can be on my own. On one hand I am grateful to have a nice place to stay and someone to take care of me, the other hand is a bit sad that I will be away from home for about 2 weeks. I'm going to miss being there, and especially Pumba (my Gordon Setter Bestfriend). I know she is going to be upset with me gone for that long. She gets anxious when I go to the store! I told Frank and my Mom that they have to drive me home before I go to her house when I get out of the hospital...I don't think that went over to well (lol).
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