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My Husband's journey with Glioblastoma
Brain Tumor | Last Active: May 12 1:04pm | Replies (169)Comment receiving replies
I am so very sorry to hear of the loss of your husband Rick. Thank you for the summary of the final stages. I know that your situation is something I will have to deal with in some manner at sometime in the future with my wife Anne. Please take care of yourself.
Anne completed the five day cycle of increased chemo two days ago. It knocked out what bit of taste and appetite that she was gaining before this last regimen. I have also noticed a bit more brain fog after the latest round. Anne is quite frustrated with that aspect. She does have good mobility though I think even that was impacted slightly during the last dose of chemo. I can tell that this whole process is wearing on her mentally.
Unfortunately, during the middle of her chemo week I went to ER and had a surgery to remove a bad gall bladder. This was not a big deal and I am recovering fine, but it was difficult for Anne to sit around the hospital during a week when she needed every bit of rest she could get. I tried to get her to go home most of the time I was there, but she refused.
May I ask you if Rick was on any anti seizure meds at the time of the seizure he had? Anne has been on lacosomide for seizure prevention since her surgery in July. She has not had any major seizures but, has had several episodes of tremors in her arm on a sporadic basis.
Again, I am so sorry to hear of your loss. I hope that you have a good support system to get you through this stage. You are in my prayers as are all of those going through this difficult journey.
Take Care,
Dan
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OMGoodness about you having gallbladder surgery in the midst of all this and great that your okay!! Your wife must have been terrified. Rick was always fearful something was going to happen to me, his lifeline. Y'all must be worn out from your health scare. Hoping things are a little calmer for both of you now.
Rick had been on oxcarbazepine for a month when he had his seizure. (He could not tolerate lacosamide due to a low heart rate.) They had warned us that his sodium could get low on the medication, to increase salt in his diet. When he had his seizure ALL of his electrolytes were low, particularly the calcium, AND he was also weaning off of dexamethasone at the same time after chemoradiation during his treatment break, before the MRI. He was down to 2 mg, 2x/day, I think, when the seizure happened. So to speak, the perfect storm was going on, according to the ER doctor. The hospital neurologist said weaning off of dexamethasone alone can cause a seizure if there's still a lot of edema. (Hope I have that right.) When the EMTs got to him he was running a fever of 101, BUT I think he was just hot/feverish because he was really laboring to breathe during the seizure. His lips had turned blue, drooling profusely, frothing at the mouth, and his glasses had fogged up, even had condensation on the inside of them. Rick seemed to recover back to baseline before we left the hospital, BUT when we were released home, bladder incontinence started, aphasia worsened, and harder for him to walk. As far as the walking, I thought he was just worn out from the seizure. I will add that I did notice his right arm had tremors off and on since his 6/28 surgery, particularly when he was trying to catnap. and his feet were more restless, right foot would have jerks while sitting in recliner.
I know I may be sharing too many details for some on my posts, and I'm sorry for that, but I just want to let others know what happened for us.
TAKE CARE as well - keep on fighting on!
Vickie