My Husband's journey with Glioblastoma

So sorry to hear about your situation. Don't worry about venting as we all need to do that. All of us who had our lives changed dramatically in a very short time understand. I agree that watching our loved one struggle is the most difficult part. My wife and I get through this by living day by day, and a strong reliance on God to assist us. Things like the money situation seem daunting, but these issues can be solved in time. Our prayers are with all those struggling with this disease.

Thank you for listening to me. I’m so scared. We are also trying to live day by day but still is so hard to shut down what will happen with the life of my kids in near future. I can’t give them everything they have right now. I have never worked and have no talent 🙁

I suspect you have plenty of talent as a mother and that is what they will need most. Prayers!

Thank you! I really appreciate all these encouraging words.

@manty54, I recommend that you ask to meet with a social worker. Oncology social work is an often overlooked service offered at cancer centers. You may find this blog post, written by the Mayo Clinc oncology social work team, helpful to learn more
– How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/

Their services include finding financial assistance and solutions, as well as helping the entire family, not only the patient.

Hello Dan -
How is your wife doing? I haven't kept up with this thread very often since my husband passed on 10/25, but checking back today and see that y'all have had a bit of a rough time. I'm very sorry to hear and hope she's improved since your last post.
I will say that after my husband's one and only seizure on 10/2, he did exhibit longer episodes of being "out of sorts," odd behavior, and also had to pee quite often, couldn't control his bladder in the end. He had to start using pull-up adult diapers after he was released from the hospital, which was an increased level of care that caught us off guard!! And while my husband lost his know-how for doing any task, he was acutely aware of any change in his condition as it was happening and would tell me so.
Many prayers for improvement for you, your wife and all the other families going through the same!! Vickie

Vickie,
Thank you for your comments and inquiry. My wife Anne is having two good weeks as this is her last week prior to the next chemo cycle on Dec 24. She hasn't had any bizarre behavior, or bladder issues since the ones after Thanksgiving. Her mind is slower to process information and retain it, she has to search for words, but she can carry on a conversation. She still has decent mobility and we can go on errands together, even went to dinner with friends this week so several things are positive now. I am still trying to figure out what caused the episode three weeks ago. The docs blame it on the brain bleed from the falls, but I am not convinced the chemo didn't contribute to it. We are going back and forth with the oncologist on her dose for the coming cycle. He wanted to increase it or keep it at 200 mg temodar. After our video call today he agreed to cut it back to 150 mg. At this point it is a balancing act between how much good the chemo does and how much bad it does. Anne's next MRI is Dec 26 so we are anxious for that result. How are you doing? I hope you have family or friends to spend the holidays with.
Prayers for you and yours,
Dan

GREAT news to hear that your wife is doing better these last couple of weeks!! And kudos to you for being such a great advocate for Anne! Big victories indeed.
As far as I'm doing...I'm hanging on, doing the best I can while heartbroken and devastated. I keep my chin up, though, knowing Rick is no longer suffering and that he's in good hands where he is. I got to witness a beautiful transition his last couple of weeks, transitioning between realms, ours and the spirit world. Yes, thank goodness, I'm spending the holidays with two of my sisters and their families. Thank you for asking!
Continued prayers and good wishes for you and yours! I think we are all anxiously awaiting Anne's 12/26 MRI results now; please keep us posted! Thank you for sharing your journey.

I am late in posting a summary of recent events, but in this case it is good news. The results of the MRI that my wife Anne had on Dec 26- "do not show any evidence of tumor growth" We were very happy with that result. With the approval of Anne's oncologist we headed south to Arizona where we hope to stay until late February. Anne has to be back in Kansas City for the next MRI on Feb 27. She will continue with her Jan and Feb chemo cycle here in AZ. are cycles 4 and 5. Physically she is doing ok with the exception of the chemo week and half of the following week when she begins to recover. There has been much confusion and back and forth with medical personnel regarding her chemo dose. It was finally agreed to be 180 mg per day during the 5 day cycle. Anything more that that and the side affects of weight loss, memory impairment and balance are too severe.
I must say that anyone going thru severe health issues of any kind must have a representative present to assist them during the process. It is necessary in order to convey to medical personnel a proper summary of results. It is also necessary to avoid errors and a sense of balance in dealing with medical personnel. I don't know if those personnel are over worked or what, but we had several incidents that would have led to problems had I not challenged what was being said. I don't see how any patient in these situations can adequately represent themself, especially when they have some impairments to begin with. Sorry for the side rant.
Anne and I actually took a walk yesterday of almost a mile. Today we went to the library and she got some books for reading. We are both extremely grateful for this additional time God has given us. We are thankful for the assistance of family and friends. We are thankful for the prayers. Our prayers go out to all others in similar situations.
Dan

I’m so happy for you and your wife. It’s great news that the MRI didn’t show any tumor growth and you can spend sometimes in Arizona. I hope she continues to improve and get better. As for my husband we are still waiting for insurance authorization for radiation which sucks. His condition is deteriorating. He is becoming very imbalanced and starting to have hiccups these are all the signs that he had before surgery that got him to ER. I’m so nervous thinking that maybe the tumor has come back and we are going to go through chemo and radiation for no reason just for more torture 🙁
He had his surgery on December 2nd and is going to start chem/rad on January 18th. Is this too
Late. They keep telling me that it is not but I’m thinking it is. The radiation doctor did a CT with contrast to do the planing and when we asked him if there is any changes he said nothing significant. So why is he getting worse? God, how can I wait another 9 days for the start of the treatment? Waiting impatiently! Hope everyone else is in better situation. We are praying for everyone. Nobody should go through this.