A disease destroys the whole family
What I realize every single day since my wife fell ill is that a disease not only kills the patient alone but the whole family members and relations among them on a mental level.
My wife who used to be mild and easy-going is not like that anymore. She is easily irritated about small things and throw unkind remarks to me more often than before. It hurts me and makes me mad, but I know that she cannot help it. It's the disease inside her, not her own self. My kids cannot have dinner with me and my wife anymore as I have to take her every weekday night to the hospital for radioactive therapy. A kind neighbor takes care of my kid for dinner. A decent dinner where me and my wife used to have with kids seems like a history.
Relationship among parents and children is also being slowly damaged. As I am tired almost all the time, I get mad towards kids for small disobedience that I used to neglect before my wife got ill. Also my wife does the same. Kids are getting perplexed about changes in their mother's personality.
A tumor in the brain is actually killing our relationship.
Hi Sunny Lee,
ReplyDeleteSince my father is also dealing with glioblastoma right now and has been for almost 16 months, I can relate to what you say. It's a rough hand to be dealt and does, indeed, affect the entire family. Hang in there, though. Your wife needs you now more than she ever has.
I have one observation to share since I've learned quite a bit about glioblastoma over the past year and a half and have seen the effects of medications on my father. You said your wife was easily irritable in a way that was unlike her pre-cancer. Well, my father went through a period when he became noticeably more irritable as well. At first, I thought he was just tired and frustrated from the treatment regimen which does often make one chronically fatigued. But I looked up the side effects of the anti-seizure drug he was on at the time (Keppra) and sure enough Keppra is known to cause increased irritability as a side effect. I notified his neurologist of this phenomenon and she took him off of the drug and put him on a new anti-seizure drug.
Once off of the Keppra, his level of irritability went down. He's been on about 5 anti-seizure drugs for various reasons. Carbamazepine negatively affected his cognitive levels. These drugs have side effects on the brain and when you are new to brain tumors, it can be hard at first to see through the side effect and realize that the change in the person may very well be drug related. We don't expect drugs to change people's personalities, but anti-seizure drugs can do such things.
My father's personality has changed over the months too. He is not the same easygoing person he used to be. He doesn't smile much anymore and rarely initiates conversation. If I talk to him, he will answer me, but his answers are relatively terse and short. He used to like to sing old songs around the house and he never does that anymore. He used to ask me how my day was and he doesn't really do that anymore.
GBM is a rough cancer not only because it is difficult to treat effectively, but also because the effect it has on the brain coupled with the effect on the brain of treatment changes people. And that change is very difficult to watch because we know this isn't the person we used to know. The brain is a very fragile organ and most don't appreciate that. When your loved one has GBM, however, you see it first hand. It is difficult to watch the change in people, but you love them nonetheless because they need you and depend on you. And your wife IS grateful for all you do for her even if she doesn't usually show it.
I don't know what meds she is on, but I would definitely investigate whether any of them might be contributing to her change in personality. Neurologists and Neuro-oncologist don't have the ability to ascertain these changes because they don't know her as well as you do and also because they don't see her for long enough to observe the changes. So they depend on you to tell them such things. I hope it is the medication she is on and a change will change her and help your entire family.
Hang in there and I shall keep you all in my prayers.
-Lee Moraglio
Hi, Lee Moraglio,
ReplyDeleteThank you very much for your kind words and useful information.
After your advice, I looked up side effects of valproate - her anti-seizure medication. The list of effects are horrible. I think she doing much better than I thought as only minor effects of the list are the case with her.
Severe allergic reactions (rash; hives; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); abdominal cramps; abnormal thinking; change in menstrual period; changes in behavior; chest pain; confusion; dark urine; difficulty speaking; difficulty urinating or other urination problems; extreme tiredness; fast or irregular heartbeat; fever; general body discomfort; hallucinations; hearing loss; involuntary movements of the arms and legs; involuntary movements or chewing movements of face, jaw, mouth, or tongue; joint pain; lack of energy; loss of appetite; loss of coordination; loss of seizure control; memory loss; mental or mood changes; nosebleed; pounding in the chest; severe or persistent nausea, vomiting, or stomach pain; sore throat; suicidal thoughts or actions; swelling of the arms or legs; tremor; unusual bleeding or bruising; unusual weakness; vision changes; yellowing of skin or eyes
I admire your calmness about your father's disease. For me, the worst thing is not her pain or my hard life, but the feeling of futility that even this fight will not last long and be in vain.
Although I don't believe in Christian God, I pray and wish that you will win the fight and regain your father in full shape.