I spent the morning with Mimi and did her usual shower and all the normal stuff. Before her shower though we talked one of our good deep talks and I wanted to share some of that with all of you.
I can only share my perspective on this conversation that we had, but I want to share it with you anyway... I will be the first to admit, I am naieve to the full understanding of what is happening with Mimi and I in no way shape or form know what I am talking about during our converstations like this one... I only can share with what comes from my heart and what my heart is "feeling".
As blunt as this may sound, it's the truth. Right now Mimi feels like she has lost her hope/faith. She shares that she carries guilt because of that loss of faith and hope, yet doesnt know what to do with either. I feel like that's a tradgedy and want to help her find at least some of it. NOT in the sense that she has to go back and find the hope of she will be ok or whatever... but more the sense of purpose for whatever time God has left for her here on Earth. I think she has accepted the fact that she is going to die.... NONE of us know when that's going to happen... none of us know when that's going to happen for each of us for that matter. I think the best way to explain what Mimi has been telling me is that, she has just accepted she is going to die and so whats the best thing she can do just ride it out smoothly. None of us know how this must feel unless you have been in that position. Like I said before I have NO understanding of what she is feeling. I almost see her curling up into "a little ball" metaphorically speaking. A ball that takes her away from it all... not only from the pain/disappointment/hurt that she may be feeling, but it also takes her away from any joy in life.
I asked her today if she had seen the movie Bucket List. If you have... you know that a bucket list is a list of roughly 20-25 things you want to do before you die. I tried to get out of her what some of those things for her would be. Let me tell you that was tough.
1. She wants to redo her kitchen.
2. She wants to get slip covers for her couchs and the new chairs they ordered for the living room!
Sounds very reasonable to me... but I want to get to the root of what does she want to do that gives her purpose... purpose to get out of bed everyday. Something that can take her mind off the few things she is concerned with right now... she seems to almost be in survival mode. Her next thoughts usually are: 1) when can I go lay back down in bed? 2) What is for the next meal (the steriods are keeping her apitite good) 3) When do I have to sit out in the chair next?
First of all... don't get me wrong... I am ALL for her having her healing period and getting the rest she needs. None of us want to push her further than she should... but I see her hurting so badly and so down and in tears way too often and I know she deserves and needs more than that. I feel like its our job as her family to help her get to that place. Maybe it just takes time, maybe we just need to wait for her and her/God's timing... I don't know. I do know that I don't want to push her for my own selfish reasons... I want to and I know I speak for everyone in the family... that we want to do whatever is right for Mimi.
I feel comfortable sharing all of this here because it isn't anything her and I haven't discussed. I have come down on her once or twice and flat out asked her... where did all your hope go? Selfishly I said to her... it's not fair to JJ to have to watch you be in bed all the time... what if God is only giving you a short amount of time left here... is that how you want to spend the last years/months/days... whatever... with him? with any of us?
I know Mimi in her heart of hearts wants and needs more and that's what I am after. I want to help her find that. I know she is making some great progess healing from a surgical standpoint and I am also realisitic to know that her brain is definitely affected by this tumor... sometimes her vision and thoughts are very unclear. Other times... very clear. We don't know how else her brain and emotions are affected by all of that... and then the meds and side effects etc... it gets rather complicated! That im all ok with.
Again, just to recap thoughts here... HOW do you find that hope again? Not false hope, but hope that gives you peace and happiness.
Any thoughts friends? I hope I have conveyed this in a good way, but maybe some of you have been in a similar situtation or maybe just have some thoughts, words of hope, or whatever comes to your mind. Feel free to share...
As always you can email her at: strengthformim@yahoo.com (I promise we are getting each and every email to her)
Friday, June 26, 2009
Thursday, June 25, 2009
Just checking in
Nothing major to report. Things are holding steady for Mimi. She has very little pain, so is off nearly all pain meds. This is wonderful because we all know the side effects were rough for her.
She is doing well with her daily schedule and is able to stay awake and out of bed for longer periods of time.
Please as I said in the posts before, feel free to stop by and bring some joy with you! I think that helps the day go along a bit faster for her and keeps her spirits up and gives her other things to think about.
Just give a call before you come by if you would! Thanks so much everyone... try to stay cool!
She is doing well with her daily schedule and is able to stay awake and out of bed for longer periods of time.
Please as I said in the posts before, feel free to stop by and bring some joy with you! I think that helps the day go along a bit faster for her and keeps her spirits up and gives her other things to think about.
Just give a call before you come by if you would! Thanks so much everyone... try to stay cool!
Monday, June 22, 2009
Bette than I expected!
Well I am sure you could tell in my last blog that I wasn't sure how things would go with Mimi and getting her up and around. Well it was a complete SUCCESS!! We got her showered, lotioned up, dressed, and sat her out in the living room. HUGE step from where she started. She said she felt so much better. My mom put her earrings on and her necklace and she looked like a new woman!
You would not believe how good her incision on her head looks. I think we counted like 12 stitches. I think I mentioned before that they didn't shave her head and really she looked like a million bucks 4 days post surgery.
My mom talked to her about making a schedule of when she going to be doing things throughout the day. Like when she will be setting out in the living room, and when she will have her meals etc. We are hoping this will at least get her on a schedule back to her new form of normalcy! She did end up setting out in the living room for a few hours and chatted with everyone.
So again just to second everything I said yesterday... feel free to drop by if you can bring her some hope and encouragement... that would be lovely! I know she has some incredible friends and loves you all dearly! Thank you everyone.!
You would not believe how good her incision on her head looks. I think we counted like 12 stitches. I think I mentioned before that they didn't shave her head and really she looked like a million bucks 4 days post surgery.
My mom talked to her about making a schedule of when she going to be doing things throughout the day. Like when she will be setting out in the living room, and when she will have her meals etc. We are hoping this will at least get her on a schedule back to her new form of normalcy! She did end up setting out in the living room for a few hours and chatted with everyone.
So again just to second everything I said yesterday... feel free to drop by if you can bring her some hope and encouragement... that would be lovely! I know she has some incredible friends and loves you all dearly! Thank you everyone.!
Sunday, June 21, 2009
Back at it
Hi everyone. Sorry to keep you hanging... I was sick this past weekend and had an open house out of town. We are back in town now and I am blogging from Mimi's computer.
Overall things for Mimi are going well. It seems that the surgery was a success and she is pretty comfortable. She came home from the hospital yesterday. Her stay was extended in the hospital because she had some rough reactions from the pain medications they were giving her.
Tina and Nuna have been caring for her all weekend. Her apatite is good. The steroids are making her hungry. They have her on Decadron a steroid to keep any swelling down.
Now... today's been a little rough. She wants to stay in bed and it seems as if some of her hope has faded... not sure if this is just a yucky side effect from the medication or if it's just that she is tired and trying to recover. It's tough to read her.
We just sat at the table and told her that we are not letting her give up. I think she's down, maybe a bit depressed. My mom is here (from Florida) and is the tough one of the bunch. She told Mimi that she is getting in the shower, because a shower always makes you feel better. She's being a little stubborn about it so we are feeling kind of bad, but know that it will make her feel better. It's a fine line to walk on keeping her up and healthy... we know the side effects are bad if you just lay there and risks of blood clots and pneumonia go up if she does just lay there although we want to not push her to do too much either... I guess I am asking for prayer and any suggestions you may have.
I also think it could be helpful if any of you (her friends from church) and such... feel free to stop by. I think anyone who can come chat with her and keep her engaged in conversation will help... I hope I am right by saying this, but again... it's a fine line. I know lots of you are worried about her and waiting to see if and how you can help and I think at this point... maybe call and mention that you are going to be stopping by and then just do it!
Talk more soon... off to get her a shower.
Overall things for Mimi are going well. It seems that the surgery was a success and she is pretty comfortable. She came home from the hospital yesterday. Her stay was extended in the hospital because she had some rough reactions from the pain medications they were giving her.
Tina and Nuna have been caring for her all weekend. Her apatite is good. The steroids are making her hungry. They have her on Decadron a steroid to keep any swelling down.
Now... today's been a little rough. She wants to stay in bed and it seems as if some of her hope has faded... not sure if this is just a yucky side effect from the medication or if it's just that she is tired and trying to recover. It's tough to read her.
We just sat at the table and told her that we are not letting her give up. I think she's down, maybe a bit depressed. My mom is here (from Florida) and is the tough one of the bunch. She told Mimi that she is getting in the shower, because a shower always makes you feel better. She's being a little stubborn about it so we are feeling kind of bad, but know that it will make her feel better. It's a fine line to walk on keeping her up and healthy... we know the side effects are bad if you just lay there and risks of blood clots and pneumonia go up if she does just lay there although we want to not push her to do too much either... I guess I am asking for prayer and any suggestions you may have.
I also think it could be helpful if any of you (her friends from church) and such... feel free to stop by. I think anyone who can come chat with her and keep her engaged in conversation will help... I hope I am right by saying this, but again... it's a fine line. I know lots of you are worried about her and waiting to see if and how you can help and I think at this point... maybe call and mention that you are going to be stopping by and then just do it!
Talk more soon... off to get her a shower.
Thursday, June 18, 2009
Just a very quick post
It's late, but I wanted to make sure you all got a bit of an update for today. Mimi had a rough night last night, they were giving her a lot of pain medication and she was reacting adversly to the Morphine. It made her very anxious and upset. Tina went up at about 1am to the hospital and stayed with her thoughout the night.
Same thing happened again this afternoon when they gave her more pain medication, it again sent her into a bit of a nervous state. Rest assure though she is doing well this evening. My mom (Sheri) who lives in Florida and I went up to see her a bit ago around 9pm and she was doing very well. She does have some head pain however seemed comfortable. She is now out of CCU and on a general med floor. I dont know yet when she will be coming home, I think it could be another 2 days though. She still needs to be able to get up and around and she has not been up yet.
Keep your prayers coming she certainly needs them all! Keep following twitter and ill update as I hear anything!
Love to you all!
Same thing happened again this afternoon when they gave her more pain medication, it again sent her into a bit of a nervous state. Rest assure though she is doing well this evening. My mom (Sheri) who lives in Florida and I went up to see her a bit ago around 9pm and she was doing very well. She does have some head pain however seemed comfortable. She is now out of CCU and on a general med floor. I dont know yet when she will be coming home, I think it could be another 2 days though. She still needs to be able to get up and around and she has not been up yet.
Keep your prayers coming she certainly needs them all! Keep following twitter and ill update as I hear anything!
Love to you all!
Wednesday, June 17, 2009
Today's recap
Well today was overall a good day. Mimi reported to Pre-op at about 5:30 @ Alligence. All the usuals were started. By 7:15 we said our goodbye's to Mimi. At that point they had already given her some medication to relax her so when we said our well wishes she was nice and comfy.
They gave us a pager (similar to the ones you get at a restraunt :-). At about 8:15 we got a page that surgery had begun. We entertianed ourselves in the waiting room. Me, Tina, Angie and Nuna just chatted it up and made jokes to keep the mood light. They told us it would take about 3 hours. By the time 11:15 came around we were starting to get anxious because we hadn't heard anything. The hospital has a guy working who's job was to just keep us informed and updated on changes. That was helpful because it just helped us relax and know what we were waiting on. Around 11:30 she was in recovery they told us and then we headed to lunch in the cafeteria. She stayed in recovery for about an hour and a half.
Dr. Kotecha came out to talk to us... in a nutshell: basically he removed everything he could safely. He placed the gliadel wafers (chemo wafers). Nuna asked him how large the tumor was and he showed us with his hands... we were all a bit surprised with how large it actually was. He mentioned that we would now just wait and let her heal and then she may be eligible to do some radiation once all this is healed.
A friend of mine who is a CCU nurse (we saw her in the cafeteria) said that Mimi would be on her unit. I was thrilled to hear that because I asked Riki to keep her eye on Mimi and I knew she was then in good hands. They let us go in the CCU 2 people at a time to see her. Tina and Nuna went to see her first. She said a couple of silly things to Tina! Angie and I went in and chatted with her.
We were both VERY impressed with how great she looked. We had assumed they would shave the back of her head... not so. She has stitches back there but it looked great. She was a bit silly with us because of the medications, but of course wanted to be sure that everyone else was doing ok. We reassured her that yep we had gotten our coffee and lunch and we were all good to go... leave it to Mimi to be concerned about others after HER brain surgery!
I spoke with the nurse around 6pm because I was feeling the pull to go up there. I was worried about her being alone although I am sure she is in great hands and is getting the rest that she desperately needs. The nurse said that she was doing very well and was eating. Mimi was very hungry after surgery so that made her happy to get something to eat! They said she would go for a repeat MRI this evening just to be sure everything was ok.
Thats about it for today!
Thank you so much everyone for your prayers. I think we all felt very much at peace knowing that people all over the US and even as far as her friends in London were praying for her. There was certainly a peace and what felt like a blanket of prayers going up for her. I don't think it could have gone better. It was great to see her so capable after surgery so soon! WE LOVE YOU MIMI... now onto the healing prayers everyone! Thank you so much!
They gave us a pager (similar to the ones you get at a restraunt :-). At about 8:15 we got a page that surgery had begun. We entertianed ourselves in the waiting room. Me, Tina, Angie and Nuna just chatted it up and made jokes to keep the mood light. They told us it would take about 3 hours. By the time 11:15 came around we were starting to get anxious because we hadn't heard anything. The hospital has a guy working who's job was to just keep us informed and updated on changes. That was helpful because it just helped us relax and know what we were waiting on. Around 11:30 she was in recovery they told us and then we headed to lunch in the cafeteria. She stayed in recovery for about an hour and a half.
Dr. Kotecha came out to talk to us... in a nutshell: basically he removed everything he could safely. He placed the gliadel wafers (chemo wafers). Nuna asked him how large the tumor was and he showed us with his hands... we were all a bit surprised with how large it actually was. He mentioned that we would now just wait and let her heal and then she may be eligible to do some radiation once all this is healed.
A friend of mine who is a CCU nurse (we saw her in the cafeteria) said that Mimi would be on her unit. I was thrilled to hear that because I asked Riki to keep her eye on Mimi and I knew she was then in good hands. They let us go in the CCU 2 people at a time to see her. Tina and Nuna went to see her first. She said a couple of silly things to Tina! Angie and I went in and chatted with her.
We were both VERY impressed with how great she looked. We had assumed they would shave the back of her head... not so. She has stitches back there but it looked great. She was a bit silly with us because of the medications, but of course wanted to be sure that everyone else was doing ok. We reassured her that yep we had gotten our coffee and lunch and we were all good to go... leave it to Mimi to be concerned about others after HER brain surgery!
I spoke with the nurse around 6pm because I was feeling the pull to go up there. I was worried about her being alone although I am sure she is in great hands and is getting the rest that she desperately needs. The nurse said that she was doing very well and was eating. Mimi was very hungry after surgery so that made her happy to get something to eat! They said she would go for a repeat MRI this evening just to be sure everything was ok.
Thats about it for today!
Thank you so much everyone for your prayers. I think we all felt very much at peace knowing that people all over the US and even as far as her friends in London were praying for her. There was certainly a peace and what felt like a blanket of prayers going up for her. I don't think it could have gone better. It was great to see her so capable after surgery so soon! WE LOVE YOU MIMI... now onto the healing prayers everyone! Thank you so much!
Tuesday, June 16, 2009
Well, tomorrow is the big day.
I just got home from Mimi's house. Did the daily emails and chatted with her for a bit. I asked her if there is anything that she wanted me to mention on the blog tonight. She just said, "I am just really at peace with all of this. I don't want anyone to cry for me, because I know no matter what I will be ok." I don't think it gets more humbling than that.
She will be having surgery tomorrow morning at 7:15. She has to arrive at 5:30. Any/all of you, please keep those prayers going all day. We are expecting that she will stay in the hospital for at least 2 days. Obviously I will keep you updated.
You will notice over on the right side of my blog I have added my twitter account. I know a lot of you may not be familiar with twitter, however... basically in a nutshell, it's a program where I can update anytime, directly from my phone. I don't need to log into this blog to get information to you. I will update as any information comes in. You can either log onto this site to read the updates if you are tying to keep up or you can just add me if you already twitter ;-) I don't want to this to be complicated, but my hope is that this way you won't have to wonder all day how things are going. You can keep up minute by minute.
If twitter is just too complicated for you, don't worry... I will update things right here tomorrow night. Check back anytime!
Thanks for making this a great week for Mimi with all of your encouragement! We love and appreciate you all!
She will be having surgery tomorrow morning at 7:15. She has to arrive at 5:30. Any/all of you, please keep those prayers going all day. We are expecting that she will stay in the hospital for at least 2 days. Obviously I will keep you updated.
You will notice over on the right side of my blog I have added my twitter account. I know a lot of you may not be familiar with twitter, however... basically in a nutshell, it's a program where I can update anytime, directly from my phone. I don't need to log into this blog to get information to you. I will update as any information comes in. You can either log onto this site to read the updates if you are tying to keep up or you can just add me if you already twitter ;-) I don't want to this to be complicated, but my hope is that this way you won't have to wonder all day how things are going. You can keep up minute by minute.
If twitter is just too complicated for you, don't worry... I will update things right here tomorrow night. Check back anytime!
Thanks for making this a great week for Mimi with all of your encouragement! We love and appreciate you all!
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