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
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