please help
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Cathi, John had febrile seizures when he was little although he never stopped breathing when he had his seizures. We were living with my parents and sleeping in the same room. My parents were gone that week so I was by myself. I woke up at 2 or 3 in the morning hearing movement from John's bed. I got up to check and he was in full grand maul. I grabbed shorts and a t shirt and hastily dressed myself, wrapped him up in a blanket and rushed to the hospital. When I got to the hospital, I realized my shorts were on wrong side out! He had strep throat and his fever spiked overnight. The same thing happened again a couple of weeks later when his strep came back but we had just left the doctor's office. once again I was rushing him to the ER. I will pray for Landon and your family.
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Thank you and yes Barbe - nerves for sure, trying to calm down, but seems almost impossible yet. I was wanting to go up and check on them Tuesday AM but I was feeling so crappy just could not muster up the energy. Amanda was like mom don't worry about it, we'll be fine we have everything we need - then WHAM. Dr said those seizures are pretty normal, I never heard of that hope to hell I never do again.
We'll take Ella home later when SIL gets out of work, thankfully she is still little and eats, poops and sleeps so while it still is busy I'll make it through the day. This just proved I gotta take the bull by the horns and do what ever I can to stick around - my family needs me. God sensing me a message again to get on the stick and do what I need to do.
XOXOXOXOXOXO
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Yes, that means put YOU first and do the things YOU need in order to feel well and be as healthy as possible!!
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Oh,Cathi! What a nightmare. Yes, febrile seizures are fairly common in children AND terrifying to see. Lots of prayers for the family. Do listen to the message, dear one. XOXOXOXO
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Thank you Judie & Elaine, I will do. I have a DR appointment Monday as a matter of fact to start the process of "something" I expect we will do the Zometa and possibly some rads. I'll be honest now my hip and leg pain has been TERRIBLE for weeks now. Pain meds + tylenol some days do nothing. They normally wanna hold off on stuff as long as possible I guess, but apparently I could have repeat rads in the future if I am just given a low dose and it helps - something like that on Monday I'll sit up take notice and make good choices. I have read so much here on BC.org the past months about bone mets and it seems that if the pain is gotten under control and the nasty rotten BC stays where it is, I can do very well for VERY LONG. I PRAY.
Istill have not discussed anything with the kids, I guess that day will be coming soon, they will want to know - I hate that part.
My 50th B'day is in June all I want to be able to do by then is DRINK TO MUCH AND DANCE , thats my goal right now.
Anyway thank you all. Sometimes I think if I don't talk about it - it isn't soooooooo - CRAZY I KNOW. The scariest thing about Cancer to me right from day one 4 years ago - was not dieing from it - it was being SICK from it. My mom was so sick from her Liver and my EX-S dad with his stomach cancer- sick and suffering. I don't ever want to be like that for my family. They both had hospice but it still was a terrible thing to watch. With all the pain meds in the world for my mom she still wreched in pain sometimes, my mom was a wonderful STRONG STRONG LADY, who withered away to bones - oh can't go on with that. Anyway I guess you all know what I mean about being sick
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Okay then Cathi, are you finally telling us that you have bone mets?
I do know what you mean about letting the kids see you "sick". I've been so strong for my kids that sometimes I think they don't even realize I had cancer!
XOXOXOXOXOX
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I totally know what you are saying, Cathi. As my deeply spiritual father-in-law said to me when he decided to stop dialysis, "I have no fear of death. I am, however, terrified of the process of dying." I feel the same way. Yet caring for him (as well as both my parents and my mother-in-law) through the process was a gift for me. When my time comes, I just hope there will be someone in my life to receive the wonderful gift of caring for me...
!But you are so right about the bone mets. An inconvenience that can be managed for a long, long time if all goes well.
Hang in there!
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Yup Barbe the cat's otta the bag, but no worries now that I have my head out of my A$$ and gonna step up to the plate and take action, I think my Onco and the Rads Onco will die on Monday when I stop putting them off.
Judie I cared for both my parents as well, my dad passed from Kidney failure (diabetes) your right it was a gift to be there with/for them. But yet, my dad passed so peacefully - just went to sleep from all the toxins in his body. My moms death (she was in my house) I have never seen as peacful the actually process of it anyway, her last few days were horrible she died in 98 it haunts me still. I loved caring for her, but my last last memory of her was helping the hospice nurse change her she had soiled, she was so skinny and sore as we rolled her to my side she just looked up at me and was crying and saying Ouch, she just hurt so bad even with all the meds if you just touched the bed. I knew she was dieing that day - I just knew it. I have wonderful wonderful memories of her as mom - but that one I hate and it never ever leaves me. I don't want my family to have that - but then I know my mom didn't want that for me either, it was my choice to bring her home with me, she was still alert when I made that decision and I will say she was pretty PO'ed at me too - (now I smile) she said I DON'T WANT YOU TO HAVE TO DO ALL THIS.
In her day my mom was a very out spoken woman - right to the point (I don't have that quality from her) . I know it hurt her pride to dwindle down. OH I LOVE YOU MOM and miss you soooooooooooooooo MUCH XOXOXOXOXOXO
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Cathi, you made me cry!
I'd be PO'd if my kids brought me home too...
Now get your hip taken care of!
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Sorry I made you cry Barbe, and I am gonna do what I need to do finally. I had to do it Barbe, I was her POA and had health care proxy, we were in NY then in a little crappy town with a little crappy hospital, the day nurses were awesome , treated her like gold, bbut I went in early one AM and she ws crying because the nurses (still the night ones) were ignoring her call light, she was still lucid , but unable to get out of bed for the bathroom, she had to go. Her DR was awesome always liked him, he got hospice set up and she was brought by ambulance the very next day to my house. I was pretty much spending 24/7 at the hospital anyway and thats what I explained to her, that having her home with me was actually physically easier on me. And physically it was. My dad had hospice but he was in their house, very close to where I lived, between hospice and some wonderful neighbors and my nephew it worked 9he passed first), mind you there are 5 of us kids, I am over being UPSET but all the others would always say call me if you need anything, they would pop in and visit but that was pretty much it. I don't have a regret in the world, just hate that one awful memory.
When my mom did pass it was a nice day 9/21 in NY I had my windows all open and was sitting on the sofa (crying of coarse) this huge huge wind blew through the living room and I know that was my dad taking my mom with him, that is my most wonderful memory of that day and most peaceful feeling also. Then and still now I just saw them hand in hand moving towards heaven.I the wind/breeze went directly over me touching me on purpose, so with the sad memory I also have a good one. Gosh am I full of emotion today or what. YIKES
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Cathi, we knew something was wrong but didn't know what. Glad you have come out from the land on De-nile. Please get something done so you can be around for your wonderful grandbabies. My grandmother admitted herself to the nursing home about 9 years ago because she didn't want to be a burden on us. Last December, when she was having problems breathing with her pnumonia, Dad called and said that she was taken to the hospital and my mom was there with her, Donald took me to the hospital to sit with mom and grandma. The nurses needed a urine sample and they had to catherize grandma to get the sample. She was so pathetic crying that it hurt and it does haunt me as well. Mom though said that when she got to the nursing home on the 6th, grandma was already in a coma and didn't make a sound when the nurse changed her but she did go so peacefully the nurse, mom and dad didn't realize it right away.
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Cathi - I have been suspect that something was up...back before Amanda delivered Ella... its not so bad (scary and frightening - yes) - I have mets to the spine which have been managed well for the past 3 yrs. Gentle hugs and prayers my dear.
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Thanks Elaine, I have known for awhile now you are right, I know that I can do this what ever I need to to stay strong , I spent time being pissed, then sad, then self pity and even saying this is it I'm done with it all, I think once we get the hip pain in check and I can hopefully stop so many pain/tylenol things will be better. This lousy cold damp weather does not help it at all either. One thing I have not done yet either is the PET, onco wants one, I am a bit scared to do that - I am now able to mentally deal with the bone stuff, not sure if I can work with anything else right now and I know come Monday he is gonna insist on that again before starting stuff. Oh my guess I'll have to do it.
Anyway off to dream land.
GOOD NIGHT ALL - XOXOXOXOXOXOX
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Dear Cathi, I had a feeling that this was what you were trying to hide from us. I'm thinking of you and praying for you. Also sending you big hugs. ((((((((((Cathi)))))))))) xxxxx
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Oh, we ALL knew it was bone mets! BUT, Cathia wanted "The Summer of Cathi" last year, remember Cathi? You were supposed to get it looked at in September. You promised!
Glad you're getting it done now....
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What a good memory you have my dear - LOL
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Thats RIGHT...good thing we have Barbe around!!
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I've been holding my breath every since...and when Cathi didn't say anything I THOUGHT everything was okay! Then she dumps this on me and now I'm upset!
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Thanks Barbe for reminding us about the 'Summer of Cathi'. Although Cathi did have alot going on with expecting the birth of her new grandbaby and all. But Cathi should have gone in when she said she would.
Just got some maybe good news, I may keep my job until August but that isn't set in stone yet.
Sheila
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Cathi...yeah, I felt something like this was afoot. But you said you reveal all in you own time, so we waited. And prayed.You know we'll be here for you. Here's hoping for a really clean PET scan.
Sheila...what good news! Here's hoping it happens and gives you more time!
More snow around here today. Somewhere around 8-14 inches through today. I say, get it out of its system! I'm back to work next Wednesday and don't want to have to deal with this when I'm working. Being out on disability has been a double blessing. All the big storms have hit the past four weeks. I've been able to just watch and enjoy from the cozy warmth of my home.
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Sheila, you're about due for some maybe good news!
Nancy, you HAVE missed the load of the storms haven't you?
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Barbe don't be upset, really its just another freakin pothole in life, all be it a bit of a larger one this time. With a clean PET, I can do all of the crap I need to.
Shelia I kept putting things off, cause there always seemd to be something going on, NEVER A GOOD TIME, I guess there will never be a good time to have Cancer and treat it so I have come to learn recently. And honestly I was I guess in a bit of De-nial. So we shall see.
Well moving away from me and back to the G'babies, Landed had a follow-up again this AM with his Peds Dr who called in 2 of her associates, none of them feel Landen's seizures on Tuesday were femeral seizures (sp) because even if his fever had spiked he should have still had a low grade fever when it was checked, he was at the most 99 rectal. So antway Amanda has to make an appointment with a Peds Neuroligist for some more follow up. She of coarse is a wreck now worried it will happen again. They showed her what to do, lay flat on back, move him away from anything dangerous etc, etc. She's onfused about Drs now (join the club). How can an ER say one thing and 3 other Dr's say soething else. Who knows.
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Cathi, John had 3 seizures in about a month when he was about 3, after the third seizure they put him on a low dose of anti-seizure meds (phenobarbital). The doctors wanted to see if there was any physical thing to cause the seizures and did an EEG on him to check his brain activity which was negative for any abnormal activity. When they did the EEG, I took him to the hospital with his favorite blanket, they gave him some meds to relax him, wrapped him in the blanket papoose style to keep his arms close to his body and I held him while they glued the electrodes on his head and while they did the test. They managed to get readings while awake and asleep. He stayed groggy the rest of the afternoon (another long funny story about that) then was fine the next day. Holding him was the hard part for me, he wanted down and I had to keep him still. I wanted to rock him and sing to him to calm him down but they wanted him still.
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(((((Cathi))))))......get in there...take care of yourself....make time for YOU now!! You are such a wonderful person, mother and wife....pls....take care so you can be around for a long, long time!! I wondered as did the rest of the girls. But as Barbe said, after last summer...you had your summer of Cathi..and then we didn't hear anything..and I too thought..no news is good news. Get that PET scan done...find out exactly what is going on...and please get on top of it!!
Did you get the confirmation for sure that it's bone mets?
We really need to plan a girls get together!!! Somewhere..even just for a short weekend...we do!!!
Sheila...I pray you get to keep your job longer. Prayers are being answered.
Back to work...been here for 12 1/2 hrs....still here...delayed flights!!
Elaine....request me as a friend also on facebook....Lisa Maggio.
xoxo
Lisa
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Cathi....your post about your parents was so special. I cried when I read it. You are a great daughter, your parents are so fortunate. I think you should have the memory of the breeze coming through...as the last memory of your mother...it's beautiful. I pictured your father coming through...extending his hand to your mother..and saying..."hello beautiful...come with me!"
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so much to catch up on....I was trying to go back and read....what an ordeal with the grandkids and your daughter Cathi!! you need some easy time!
good to see you Leesa...
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Just a quick pop in to say hi - lucky me I was fortunate enough to get the nasty tummy bug from all the kids. I knew I wasn't feeling quite right Thursday AM, but oh well I thought, well by noon, UGH. I'll spare all the details, it was not pleasant to say the least, feeling better this AM, I can not at least sit up without total nausea.
Lisa yes I do have the official word, the PET scan is to rule out any other areas - it would from what I am understanding show anything else where in the body and also give a clearer picture on the bone lesions already picked up on X-Ray, MRI & CT. I hate the PET Scan of all the tests that one freaks me out the most - that stupid machine seems so darn small, I have had 2 and always managed to make it through but not without a lot of mental stress, when it's scheduled no more brave ass for me, I am gonna ask for something to calm me a bit. I hate PET Scans
My brother used to have Epilepsy seizures when he was young, as far as I can recall he hasn'y had any in many-many years. I also had a co-work who's son was about 4 when he had his first one in a weeks time the little guy had had 5 they ran all kinds of tests ever found anything he is 10 now and has never had another. So we'll see, Amanda is just freaked it will happen again when she is alone, I think it's more worry over the fact that he stopped breathing I am sure, that was so scary.
Anyway back to lie down for an AM nap.
LOVE TO ALL
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Oh Cathi
I think we all assumed that things were not right. But to say it out loud is awful. What an absolutly jobbie time you have had with worry about Ella, Landon and your wee self. Please take best care of yourself.
Shiela - great news. Your employer must value you. How is yout mum?
Well, saw Dr Ya Ya - no not a joke - that's his name. on Friday. Got the closest thing to "all clear" that can be spoken legally. My head is spinning about it. I have had a week of appointments, 2 on Monday ,Herceptrin in the morning, the auld bowel business in the afternoon, Dr Kia Ya Ya on Friday, follow up appointment at the Beatson on Thursday re ethe rads.
All good news, will get the end problem sorted in May. I cannot walk uphill because of the steroids - muscles is the thighs don't seem to work - bit of a problem as I live in a hilly place.
Hope all of you are warm and cool.
Lots of love
Nettie xx
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Thanks for all the good wishes regarding my job. The only reason my job may be saved for a couple of months, the consolidation won't take place when they originally announced it.
Sheila
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YEAH NETTIE - THE ALL CLEAR thats wonderful news. You are right as usual saying the words out loud is difficult. I so dread the day when I do have to give my DD's the news, UGH.
So Ed and I have been batteling the nasty tummy virus that has plaqued the rrest of the family. I had it just awful on Wed & Thursday still lingers a bit if I eat , Ed is quite ill today, his started yesturday. Thinking I might need to call Onco in the AM and reschedule for next week. The thought of bringing what ever germs I possess into the office for those in active treatment is not a good idea at all. Waiting one more week is not going to change anything and I would not want someoone to expose me to something so GUT WRENCHING (and it is).
We have sunshine back finally, still about 10 degrees colder than our normal high temp of 73 for this time of year, but the harsh winds have stopped so it's pretty nice, thinking with some warm cloths I might be able to even get Margo out for a walk later today she needs to expell some energy she has kinda just been laying around with her sick keepers the past few days and none of the kiddies have been over to give her a back yard work out either for a week now.
Landen continues to have extreme Pooh, he see's Peds Dr on Tuesday and has his neurologist visit on 3/8, so far other than the bad pooh, many many times a day he is doing ok. Little guy has lost some weight , I stopped in Saturday, can see it in his face and when you hold him.
I hate to think about all the germs my family is sharing.
HAPPY SUNDAY EVERYONE.
XOXOXOXOXOXOXO
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