Emotions

[kellyOd]

Currently sitting in an Advanced Radiology.. going through the emotions of the “scanxiety”.. PET scan in progress. Hopeful yet guarded.. I feel like the chemo Taf/Mek has been doing its job. Going from not being able to walk and completely bed ridden to being able to lift simple weights and doing push ups. (Men 😂) holiday was full of family and joy. Unfortunately we had one of the worst seizures last night that he has had yet. Getting the brain tumor removed has left us with NES, non epileptic seizures.. and the medicine he’s on doesn’t seem to be stopping them. Usually every 30 days, and the last one he had was November 6th.. until last night. I don’t know how or what to think. Can his seizures be controlled with anti convulsants? The doses of the seizure meds keep going up, and it seems to buy us a few more days each time.. I went to his neurologist today to see if I could get a few answers, maybe someone here can help? Ryan stays at home now because he can’t work, or drive.. and I work 12-13 hour shifts. When he has seizures, SOMEHOW I am always home. (Luck?) but what do we do if I’m not there? How do we make a plan? We have a simple plan set.. sit on the floor.. and call my cell and let it ring so I know to come home as fast as I can.. but he vomited during the seizure last night, and had I not been there to help him get it out, he would have choked. What do we do if no one is there? We don’t have family that can be there all the time, they are unexpected seizures.. we never know when it will happen. I don’t know what to do 😔

[missyrand Ambassador]

kellyOd,

Today is also Pet scan day in our house.

Seizures can be scary. My mom has lived with a seizure disorder following a TBI from a fall 30 years ago. It takes a while to find the right dose of anti-convulsants because they try to be a low as needed.

We have 2 current members in our Living With Melanoma support group who have seizures following surgery for melanoma tumors. One did not develop seizures for a year post surgery, and they are continuing to work on dosages. He is also tracking what he did during the day when a seizure happens to see if there are environmental contributions. In his case he has notices that when he is around a lot of people for an extended time talking without rest this seems to be correlated with an occurrence. He has challenges with word searches for nouns as a post operative effect.

The Pet may also show if there are tumors impinging on other brain structures which may be contributing to seizures? I would guess it is challenging for you both to collaborate between neurology and oncology.

I like that you have specific questions to ask as to how to track and intervene with seizures, and what tips can the MD and nurses provide to prevent injury and choking in the event of another seizure. When you get that intel, I look forward to learning with you how it helps.

You are on my heart today,

missy

[kellyOd in reply to missyrand]

Thank you for responding! I am hoping the best for you and your husband for the PET scan today. I’m still sitting here waiting. That’s interesting that you say that, I racked my brain if there was any differences in yesterday’s activities versus other times he’s had them. Sometimes he has been home all day, doing nothing, or yesterday; we were with family talking and speaking with a lot of people. He had a smidge of caffeine in a green tea around 4:00 pm. Maybe the caffeine? I don’t know. I will also keep track of the activities. We just got a brain CT the other week, and met with the neurologist last week about it and it looks wonderful. I think it may have to do with the scarring from the removal. We had an EEG done and she said it’s a little slower activity on that side. So maybe the healing process is taking the toll. I’m just not sure. We have room to wiggle with the Vimpat that he is on. He’s on a relatively low dose of that compared to what it can be. But when his seizures are that serious it’s hard to be patient with the process.. he has a “warning” thank god. He looses his ability to speak, and we have about 3 minutes to get him an Ativan and to sit on the floor before he goes out completely. 20-30 minutes after he’s in a complete daze and can’t regain his speech. But he is in a dangerous situation, in that 20-30 minutes he has no recollection of what he does. So if I’m not there to make sure he doesn’t hurt himself or others or wander outside; then I don’t know what would happen. It’s terrifying....

[Bigsister3]

Hi kelly

I am sorry about last night’s seizure, how scary for both of you. I am glad that you had a joyous and family filled holiday. I am thinking of you as you wait for scans and hoping that you find some solutions. You might want to discuss your living situation with your doctors or palliative team. They might have some solutions that can help, even if it is someone just physically checking in. I learned that sometimes unless you ask you don’t hear about all of the support services that are available. Good luck today

[missyrand Ambassador in reply to Bigsister3]

Echoing that you may want to talk with your providers to think through supports, including technology? Consider asking for a "panic button" that auto connects to you and perhaps a neighbor so that when there is a seizure someone can come and stay for an hour? How interesting that there is a warning time lag ahead of time. I'll have to ask my friend if he has this experience, too, and what he and his partner do to manage in that window.

missy

[SGHSweethearts]

kellyOd,

I am so sorry to here about Ryans seizure. This is one thing we have not had to deal with with my husband, and it sounds very frightening, but you sound like you really know how to handle it. You really are doing an amazing job in such a frightening situation, even though I know you are frightened. I hope you get the answers you need, and they find the right dose of medication to help control Ryan’s seizures. My cousins husband was diagnosed a year ago now with glioblastoma, and I know he has had several seizures, he has had 2 surgeries, 2 gamma Knife procedures, and a round of 12 chemo sessions. I will ask her if she has any helpful information to pass on. I understand being frightened about him being home alone should something happened. I wish I lived closer I would be glad to help out. I know how much I leaned on my girlfriend to help me with Mark when things were at its worst. I will be looking to see what you find out about what resources there are available to you pertaining to that. How did the PET Scan results come out? Keeping you both in my prayers.

Michele

[kellyOd in reply to SGHSweethearts]

If you could, let me know anything you can find out! I am desperately looking for solutions and options. I feel the same way with everyone here, I wish I lived near. I am currently waiting on a call back from the Oncology team now. Unfortunately the two doctors we have been with this whole journey are out for the holiday. And they have doctors in their place. I’m stuck between wanting to hear how it is because the anticipation is killing me, and wanting to hear it from OUR doctor.. either way. We have an appointment on the 2nd with the oncologist to discuss further treatment options. Taking it day by day. On the bright side, Ryan is doing super well. He’s been pretty active lately. With little to no pain. The only pain he seems to have is in his lung. Everywhere else is non existent 😊