Rory was discharged from the hospital yesterday afternoon with a repeat of instructions / recommendation to meet with a Psychologist to investigate other non-epilepsy potential triggers for the seizures. We have that appointment set for Thursday. They also set an appointment to meet with their epilepsy team ... on JANUARY 8! Seems a bit "far" into the future to me, but I guess we'll see how the next few months go.
Everyone was very happy to have Rory back home. She did have at least one other event during the evening, and we're trying not to be worried about them. Yeah, that's not so easy. But hopefully some extra rest will help calm things down.
Will check in here again when there is more to update. Thanks to everyone who has let Rory know she is in your thoughts and prayers!
Wednesday, October 9, 2019
Tuesday, October 8, 2019
What it isn't
Just heard again from the doctor. He confirmed that the epilepsy team specialist agreed that Rory's tremors are not the dangerous epileptic variety. They will make a follow-up appointment with that specialty team a couple of days from now, and he recommended she meet with her psychologist as well. Between all the specialists we'll get a good plan in place.
I haven't seen or noticed any more episodes all day today, which everyone is taking as a great sign. But, even if they do occur again, there is no danger or concern medically. At this point there must be something else triggering them, quite likely the shock her body has been going through with everything over the past few months. Since most of those stressors aren't going away any time soon, it won't be a surprise if the episodes return. But at least now we know not to be too concerned for her health or safety if that happens again.
Hoping for discharge to be processed shortly.
I haven't seen or noticed any more episodes all day today, which everyone is taking as a great sign. But, even if they do occur again, there is no danger or concern medically. At this point there must be something else triggering them, quite likely the shock her body has been going through with everything over the past few months. Since most of those stressors aren't going away any time soon, it won't be a surprise if the episodes return. But at least now we know not to be too concerned for her health or safety if that happens again.
Hoping for discharge to be processed shortly.
Tough Love
I mentioned the EEG team is removing the electrodes. One of the members is having a "tough love" discussion with her right now that is probably worth me writing down so she can remember it later.
Rory's reaction started towards the self blaming that she's been wasting everyone's time since they haven't been able to definitively figure out the cause. The tech got down "in her face" to try to turn around her approach. There was a lot of "Hey, there was no time wasted at all from you coming in here. Please don't cry, listen to me. I'm not even kidding here. There are so many reasons why your body is doing this. Just because it isn't coming from the brain just means there is one of a ton of other possible reasons. Obviously what you're experiencing is real, so don't be upset or cry that you think you're making things up or are wasting our time. NONE of our time has been wasted for you."
Yeah, he was pretty blunt and I hope it got through to her. I know that guilt comes quickly to her, and it's a natural reaction, but he was pretty in-her-face with his own reaction to her reaction. But in the end it was out of concern and support and I hope she remembers that part of it.
Rory's reaction started towards the self blaming that she's been wasting everyone's time since they haven't been able to definitively figure out the cause. The tech got down "in her face" to try to turn around her approach. There was a lot of "Hey, there was no time wasted at all from you coming in here. Please don't cry, listen to me. I'm not even kidding here. There are so many reasons why your body is doing this. Just because it isn't coming from the brain just means there is one of a ton of other possible reasons. Obviously what you're experiencing is real, so don't be upset or cry that you think you're making things up or are wasting our time. NONE of our time has been wasted for you."
Yeah, he was pretty blunt and I hope it got through to her. I know that guilt comes quickly to her, and it's a natural reaction, but he was pretty in-her-face with his own reaction to her reaction. But in the end it was out of concern and support and I hope she remembers that part of it.
Roller coaster
Rory took a selfie with her EEG hookups:
It was interesting to me that the whole EEG setup includes video monitoring:
She had several more "events" during the night, which was exactly what they were hoping for.
The doctor just came in to discuss things with us. He is waiting for a final report from the epilepsy specialist, but he said based on what he saw on the reports that he would be very surprised if they came back saying the shaking is due to epilepsy. No epilepsy = good. He also talked through her current medications that could be a slight contributor to muscle weakness or shaking, but again he didn't think those were very likely. Instead, he said it is quite normal for this sort of manifestation being caused by underlying stress, which she has certainly been under! They have enough data from the night to definitively say (pending epilepsy final report) that the shaking isn't medically harmful, and the most difficult thing will be for us as family to watch if they continue. But, unless something dramatically changes in the symptoms there will be nothing to worry about. Oh - he did say she won't be allowed to drive for 3 months following an event where she loses consciousness, but she hasn't been driving anyway.
So the EEG team is working to remove all the electrodes, and at the same time EKG is running another heart scan just to make sure everything still looks good. Their hope is that we'll be going home sometime today. Rory is understandably a bit disappointed that they haven't been able to definitively say "this is what's causing the shaking" but at least they have ruled out some of the more ominous potential causes. Still, it's frustrating for her to not have a clear answer.
We'll have an appointment with the team's epilepsy specialists to discuss things to watch for going forward. Also, she's supposed to see her mental health provider within the next week so we'll try to get that set up soon.
It was interesting to me that the whole EEG setup includes video monitoring:
She had several more "events" during the night, which was exactly what they were hoping for.
The doctor just came in to discuss things with us. He is waiting for a final report from the epilepsy specialist, but he said based on what he saw on the reports that he would be very surprised if they came back saying the shaking is due to epilepsy. No epilepsy = good. He also talked through her current medications that could be a slight contributor to muscle weakness or shaking, but again he didn't think those were very likely. Instead, he said it is quite normal for this sort of manifestation being caused by underlying stress, which she has certainly been under! They have enough data from the night to definitively say (pending epilepsy final report) that the shaking isn't medically harmful, and the most difficult thing will be for us as family to watch if they continue. But, unless something dramatically changes in the symptoms there will be nothing to worry about. Oh - he did say she won't be allowed to drive for 3 months following an event where she loses consciousness, but she hasn't been driving anyway.
So the EEG team is working to remove all the electrodes, and at the same time EKG is running another heart scan just to make sure everything still looks good. Their hope is that we'll be going home sometime today. Rory is understandably a bit disappointed that they haven't been able to definitively say "this is what's causing the shaking" but at least they have ruled out some of the more ominous potential causes. Still, it's frustrating for her to not have a clear answer.
We'll have an appointment with the team's epilepsy specialists to discuss things to watch for going forward. Also, she's supposed to see her mental health provider within the next week so we'll try to get that set up soon.
Monday, October 7, 2019
Here we go again
After arriving at drill tonight Rory called to say she was heading to the ER. Much of the afternoon she had been experiencing tremors, more than usual, and at times she couldn’t get her computer mouse to do what she wanted. Her hand would periodically spasm, and she was having some difficulty speaking. After talking to a nurse over the phone they decided that going to the ER was warranted. Maybe it was a reaction to some of the new medication? Or maybe something else? After living with cancer for the past 8 years, a little trip to the ER wasn’t all that worrisome. Maybe we are just de-sensitized. Kaeli planned to take Rory to the hospital and I planned to stay at drill.
It was only a few minutes later that I got a frantic call from Kaeli saying, “You need to be here NOW.” I drove across the valley to find a party going on in room 9. The story eventually came out. After walking into the ER on her own, apparently Rory had some difficulty during checkin. The doctors described trembling as “partial seizures” because she had responsive eyes and was able to speak again almost immediately after the tremor stopped. Also before I arrived they did a brain CT.
They had several staff come in and check whether they could start an IV, but eventually decided to call in the specialist with the ultrasound machine. The parade continued with doctors coming in to tell us that they had consulted with the on call oncologist who didn’t think the medications were causing the tremors, so they thought it must be a neurological issue. THAT meant she would be transported to and admitted at the big hospital in Murray where the IMC neurological specialists are located. While all this was going on the IV nurse was prepping, until a much more seizure happened. This time the doctors came in to observe, and they agreed that one was a “real seizure.”
Eventually they got all the fluids they wanted to start some testing, and the transport ambulance arrived to take her away. I went back home to change clothes, gather some items that Rory wanted (especially her pillow), and talk to the kids about what was going on. Then it was off to the hospital.
We are on the 14th floor and it looks like we will have a great view in the morning. I talked to the doctor for just a minute to describe the episodes at Alta View, and she told me that the initial CT looked really good. As I am writing this there are a couple of techs gluing electrodes to Rory’s head which will monitor brain waves (EEG) for at least the next 24 hours. Odd to think that we hope she has another seizure so they can record it. The techs have really got Rory talking about the kids, we are sharing photos of the grand babies, talking school and music, and more. All while they are using some VERY nasty-smelling glue to affix the EEG equipment.
Might have another update shortly, but I want to pause here to email the blog link out to everyone with at least this much info.
It was only a few minutes later that I got a frantic call from Kaeli saying, “You need to be here NOW.” I drove across the valley to find a party going on in room 9. The story eventually came out. After walking into the ER on her own, apparently Rory had some difficulty during checkin. The doctors described trembling as “partial seizures” because she had responsive eyes and was able to speak again almost immediately after the tremor stopped. Also before I arrived they did a brain CT.
They had several staff come in and check whether they could start an IV, but eventually decided to call in the specialist with the ultrasound machine. The parade continued with doctors coming in to tell us that they had consulted with the on call oncologist who didn’t think the medications were causing the tremors, so they thought it must be a neurological issue. THAT meant she would be transported to and admitted at the big hospital in Murray where the IMC neurological specialists are located. While all this was going on the IV nurse was prepping, until a much more seizure happened. This time the doctors came in to observe, and they agreed that one was a “real seizure.”
Eventually they got all the fluids they wanted to start some testing, and the transport ambulance arrived to take her away. I went back home to change clothes, gather some items that Rory wanted (especially her pillow), and talk to the kids about what was going on. Then it was off to the hospital.
We are on the 14th floor and it looks like we will have a great view in the morning. I talked to the doctor for just a minute to describe the episodes at Alta View, and she told me that the initial CT looked really good. As I am writing this there are a couple of techs gluing electrodes to Rory’s head which will monitor brain waves (EEG) for at least the next 24 hours. Odd to think that we hope she has another seizure so they can record it. The techs have really got Rory talking about the kids, we are sharing photos of the grand babies, talking school and music, and more. All while they are using some VERY nasty-smelling glue to affix the EEG equipment.
Might have another update shortly, but I want to pause here to email the blog link out to everyone with at least this much info.
Thursday, April 13, 2017
Lots Of Medical Etc
I havent written for awhile. Have had ups and downs, but with current medical etc, it seems a good time to get caught up.
I have spent the last 2 days with lots of dr appts. I had both main dr offices order all of my big labs. I am still waiting for several results for one office. All of my oncology labs came back today.
Today I met my new oncologist. She was very nice. At first I worried we would spend the whole appt going over old stuff. Turns out going over old stuff was really important. She was very thorough and made sure that I understood all of her instructions. She even made a specific list of things I need to work on and things they will take care of...So for my appt today.....
Confirmed UTI # I have lost track...Trying a new antibiotic, so will see how that goes
All of my cancer markers and labs came back stable. My blood calcium level came back way too high. Not sure of the cause since I am getting tons of fluids already and not taking any supplements. Only way to help my numbers drop back to safe is getting my bone protector injection and IV fluids. Thankfully I have wonderful infusion nurses and they took really good care of me.
Because calcium levels are too high, and I havent had any imaging in last 6 months, I am being scheduled for another CT and a bone scan. Dr office is hoping to schedule those together. It will make for a very long day, but hopefully will give us some good answers.
My dr has taken me OFF of tamoxifen! Totally different thought process/perspective - "If you have been on it all these years, and the cancer came back, then why continue with it? It is obviously not working." We are replacing it with another med similar to tamoxifen, but mostly for postmenopausal women (which technically I am) and esp since I no longer have my ovaries.
We talked in some detail about my chemo and whether to continue. She was pretty adamant that I need to work through the hard stuff and stick with it because my labs show that it is working, and hopefully still making a difference. We talked about my biggest concerns, most difficult side effects. Not really anything to do to relieve them. Hopefully going off the tamoxifen completely will resolve my vision concerns and some of my monster brain fog. I will stay on chemo through this whole cycle and probably the next one, knowing we will discuss imaging and make any changes once we are to that point.
I think that covers things for now. I will be sure to post my other lab results as soon as I have them back. Thanx for sticking with us!
Wednesday, March 15, 2017
Shared Thoughts
I realized that as I have been going through cancer etc for a 2nd time that I have the experience and perspective to be able to help others through this process. I am part of a support group for cancer/tamoxifen. I find that when I reply to a post that I end up writing/sharing quite a bit. I realized, though, that i wasnt posting my responses here - another place where I might do more good. Not sure if I can go through the other page and search for just my posts, but I can start here to post from now on.
Today there is a gal who is new to the support group. Sounds like she has been through a lot in recent months. This was my reply (just a note that each time I do post, esp a long reply, I am just having my fingers move across the keys, but inspired writing happening, I hope so. It would be nice to be of a help to someone else, and know it is not me)
So sorry you are struggling. You are right that we all struggle at different times through treatment and trying to go forward. After spending tons of time in the hospital because of surgical complications, when I came home I refused to look in any mirror - no hair and I felt like I had been butchered. We made our master suite with lots of mirrors on purpose to reflect natural light - I hated our room for a really long time. It was no longer a comforting place for me, because everywhere I looked I only saw this hideous person. I crashed and burned and recovery was very long the first go around. I cried every day, I struggled to care whether I ate, whether I stuck around for anything. My weight plummeted, but I just didnt care. Really put my poor husband through the wringer.
One thing that our family did, right up front, was to take time every single day to consciously look for good, no matter how small. Little did we know how devastating things would be. We made a wall in our dining room to post recipe cards, or memes, or picts (my youngest daughter was tiny, just learning to hold crayons/draw) Everything on that wall was a pict or paper of every thing that had been a tender mercy, or a blessing, or something good, no matter how small. We clung to this endeavor esp when things were at their worst. There were many days - esp when I had been in the hospital again or another surgery - that I could not think of a single thing to write down, I was too sad, too overwhelmed. But when I took time to look back, there were good things there all along.
This go of things has almost been harder. I feel extra crummy going through chemo and staying on tamoxifen at the same time, plus all my other meds. My weight is crazy the other way, I am trying to manage meds and side effects at the same time. There are days I dont want to get out of bed, and only do because my kids need my help (we do school at home), there are days I dont get out of bed at all. I cant do little basic things like shower or cook or dress, I have driven very little in most of the last year since I was diagnosed again. All of these are part of the process - some days are ok, and others just totally stink.
Your feelings are valid. What most people dont understand, esp those who have never gone through it, is that this is a grieving process. Each in our own way have experienced great loss that often cannot be reclaimed. We have every right to grieve, and we do, all along the process and this journey that is now ours. There are many stages of grieving, we may get through one, just to get stuck on another, or go backwards sometimes.
It is ok, and for each of us, there is also something that is so important to remember - there is and there will be healing - it may come at first, or not for a very long time. Healing will come, our hearts and our minds are strong, even if it feels like our body will never be strong again. Give yourself permission to cry, to have bad days, to be mad at the whole thing. Give yourself permission for your body to heal, it has been through alot, and it will take time for you to get closer to goals that you want to achieve. They always say that a body takes 9 months to grow a baby, and it takes at least that long to meeting goals. Except, we are not the same as we were before. Our bodies have changed, a lot. Pre-pregnacny "perfection" happens to very few. We have been through big physical changes, along with the emotional and mental ones. It is hard to say, but we will never go back to being who we were before - and that is ok - because we are stronger and better and more amazing in so many other ways. We are more sensitive, more compassionate, more gentle, more caring, we have a totally different perspective that we did before. We are different than before and that can grow to be a really good thing. I will be sending best wishes and tons of hugs that the rest of your week will be better, and that you will find comfort and peace as you work through this next stage. Remember that you are amazing! You can do this! We are all right here too, we have your back! Sending tons of hugs!
So many others that I can think of that I hope this message reaches. Amazing women that I love dearly, who are incredible examples to me. I hope that to whoever this reaches that they will know that they are strong, and they are amazing, and esp that they are loved!
Today there is a gal who is new to the support group. Sounds like she has been through a lot in recent months. This was my reply (just a note that each time I do post, esp a long reply, I am just having my fingers move across the keys, but inspired writing happening, I hope so. It would be nice to be of a help to someone else, and know it is not me)
So sorry you are struggling. You are right that we all struggle at different times through treatment and trying to go forward. After spending tons of time in the hospital because of surgical complications, when I came home I refused to look in any mirror - no hair and I felt like I had been butchered. We made our master suite with lots of mirrors on purpose to reflect natural light - I hated our room for a really long time. It was no longer a comforting place for me, because everywhere I looked I only saw this hideous person. I crashed and burned and recovery was very long the first go around. I cried every day, I struggled to care whether I ate, whether I stuck around for anything. My weight plummeted, but I just didnt care. Really put my poor husband through the wringer.
One thing that our family did, right up front, was to take time every single day to consciously look for good, no matter how small. Little did we know how devastating things would be. We made a wall in our dining room to post recipe cards, or memes, or picts (my youngest daughter was tiny, just learning to hold crayons/draw) Everything on that wall was a pict or paper of every thing that had been a tender mercy, or a blessing, or something good, no matter how small. We clung to this endeavor esp when things were at their worst. There were many days - esp when I had been in the hospital again or another surgery - that I could not think of a single thing to write down, I was too sad, too overwhelmed. But when I took time to look back, there were good things there all along.
This go of things has almost been harder. I feel extra crummy going through chemo and staying on tamoxifen at the same time, plus all my other meds. My weight is crazy the other way, I am trying to manage meds and side effects at the same time. There are days I dont want to get out of bed, and only do because my kids need my help (we do school at home), there are days I dont get out of bed at all. I cant do little basic things like shower or cook or dress, I have driven very little in most of the last year since I was diagnosed again. All of these are part of the process - some days are ok, and others just totally stink.
Your feelings are valid. What most people dont understand, esp those who have never gone through it, is that this is a grieving process. Each in our own way have experienced great loss that often cannot be reclaimed. We have every right to grieve, and we do, all along the process and this journey that is now ours. There are many stages of grieving, we may get through one, just to get stuck on another, or go backwards sometimes.
It is ok, and for each of us, there is also something that is so important to remember - there is and there will be healing - it may come at first, or not for a very long time. Healing will come, our hearts and our minds are strong, even if it feels like our body will never be strong again. Give yourself permission to cry, to have bad days, to be mad at the whole thing. Give yourself permission for your body to heal, it has been through alot, and it will take time for you to get closer to goals that you want to achieve. They always say that a body takes 9 months to grow a baby, and it takes at least that long to meeting goals. Except, we are not the same as we were before. Our bodies have changed, a lot. Pre-pregnacny "perfection" happens to very few. We have been through big physical changes, along with the emotional and mental ones. It is hard to say, but we will never go back to being who we were before - and that is ok - because we are stronger and better and more amazing in so many other ways. We are more sensitive, more compassionate, more gentle, more caring, we have a totally different perspective that we did before. We are different than before and that can grow to be a really good thing. I will be sending best wishes and tons of hugs that the rest of your week will be better, and that you will find comfort and peace as you work through this next stage. Remember that you are amazing! You can do this! We are all right here too, we have your back! Sending tons of hugs!
So many others that I can think of that I hope this message reaches. Amazing women that I love dearly, who are incredible examples to me. I hope that to whoever this reaches that they will know that they are strong, and they are amazing, and esp that they are loved!
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