mary colleen

We have somewhat of a dilemma at our house right now. My husband has been through chest and brain surgery in the last year, as well as chemo and (most recently) whole brain radiation. Though we don't so much think of this much, he is considered to have Stage 4 LC now. His radiation ended 6/22, and he is just recently beginning to be more active again. He was off work from late April (at the time of his brain surgery) until now. His workplace is beginning to want him to come back to work soon, but he cannot do the job he did before. It required driving most of the day, and he has lost a portion of his vision due to the tumor. The most recent word from the neurologist is that his vision loss is permanent. My husband's employer would be unable to insure him for driving company vehicles. They then proposed putting him in an office job that would require a great deal of computer time. My husband feels this is probably not something he could do successfully - partly due to the vision issues, partly because he has experienced difficulty learning thinking, and writing since the brain tumor and WBR. I don't know if this is permanent. I think it will take months to know that. He's at a loss and so am I regarding what to do. I am trying to help him to consider all options and possibilities. One thing I threw onto the table was the possibility that he apply for government disability based on his situation, and he is willing to think about it. I don't know anything about this however. I though maybe someone here may know the answers to my questions: Is disablity difficult to get under these conditions? If one is on government disability, how do you get health insurance? (He is currently covered by his employer's insurance.) If on disability, can you still work some limited number of hours without endangering it? If he is feeling well, I could foresee him wanting to work a little bit just to help fill his time. If anyone has any info on any of this, I'd appreciate the help. Thanks!

I am so deeply sorry.

Welcome. Can you tell us a little something about your situation? Mary

Jane, God bless you - you did it your way and in accordance with your play book, and that took great love and compassion. Your Mom is fine, though you probably feel as if your center of gravity is suddenly gone. Now, you need and deserve rest. I'll pray that you get it. MC

Good for you Teri - reaching out is good and strengthening. Bless you!

Bucky, for your birthday, I wish you great peace and happiness. Mary Colleen

Teri, the fact that you care about this, in light of all you are struggling with, is special. It tells me also that these relationships should continue, and that you should be sure not to step back from them out of reticence, or out of not knowing how to define your place now. You are still a grandmother and a step-mother, not just legally but in your heart. That is your very important place - perhaps more important now than ever, since you have the job now of continuing to extend Bill's love to his children and grandchild. I wish you great joy in doing that.

Teri, A couple of possiblities in your area: Kaiser Permanente Hospice Organization has bereavement groups: 818-375-3528. This line is specifically for bereavement referrals. Our House (ourhouse-grief.org) 818-222-3344 I hope these help. I think of you each day. MC

Thanks Adrian, that was helpful.

Welthy, I'm not a radiation pro, but want you to know I'm aware of your recent developments and truly hoping for the best for you and Tony!

My husband finished 20 days of WBR in 7 weeks ago. The resultant fatigue is improving, but he has a persistently depressed appetite, has lost about 10 pounds, has new (pretty moderate - ibuprofen and an ice pack help) back pain, and he seems to have redeveloped an intermittent dry cough similar to the one he had prior to the original diagnosis. He has seen the radiologist for a follow up check, and he apparently thought everything was ok. He has new scans and bloodwork on 8/10, so I guess we'll see how things are then. Anyone else in the WBR world have these kinds of issues a couple of months after? Maybe the cough and back pain are just incidental, not sure. Thanks all

Jane, I echo Teri's thoughts. I truly do know how very rugged this is. I did the same things for my Mom in her final months, days, minutes, and it was very, very trying and exhausting. I felt almost desparate sometimes. Two years later, I would not have exchanged that experience for anything. Stay strong.

Jen, My husband had a single brain met in April - a roughly 3 cm tumor in his occipital lobe. I felt that he had one before diagnosis, so the symptoms must have been pretty overt. Symptoms: 1. Visual disturbances - since his tumor was in the occipital lobe, he had intermittent visual distortions. 2. Memory/cognitive lapses - just one that I was aware of, but it was a pretty big one. Forgot what car he had driven to Wal Mart (mine) and reported his stolen when he couldn't locate his vehicle. All of these symptoms manisfested pretty rapidly - no more than 2 weeks from first symptom to diagnosis and surgery. Some people also have headaches, nausea, gait problems or other symptoms. Some people are symptomless. Hope this helps.

My husband just finished WBR, which is a similar form of brain radiation, and had severe dizziness in short spells from about the last week of treatment onward through last week. His radiologist told us it was par for the course.

Aw Gail - I feel for you. I've lost a few dear furry critters in my life, and I know how heavy it leaves you feeling. He must have had a very happy life and home to have still been happy to see you each morning. Thank goodness for that.

Good news, even if not completely conclusive. Keep us posted and enjoy your Sunday. MC

Aaron, thinking of you and watching for news. You will look cool with an eye patch:) Keep us posted. MC

Beautiful and fitting, Teri. You and Bill have both been so blessed.

I hope that wishing for some time alone isn't a bad thing - I find myself wishing for a break more and more recently. I am working, but my husband is not. Except for my brief drive to and from work, I am not alone these days from the moment I wake up until I go to bed at night. This is not a reflection of my feelings for him at all, but - everyone needs some time. Someday soon, I'm going to book a facial or something and hope to go alone. On the other hand, my minor trouble with this is nothing compared to his, and I have no trouble remembering that. Don't feel guilty!

Teri, Thank you for sending this out. I don't know why I didn't think of it myself. I personally will be honored to donate in Bill's memory. I have thought of him and of you so, so many times in recent days. Peace, comfort, and love. Mary Colleen

Bucky, Well, not exactly what you are looking for, but: my husband was "NED" for 7 months before getting a brain met, which of course jumped him to stage 4. Mary

My husband is 4 weeks out from finishing WBR. He is struggling some with recovery - still very fatigued, sometimes dizzy, pretty inactive, low appetite. There is some pressure coming from his employer to return to work sooner rather than later, and to be honest, I just can't see it. He can be fairly alert and moderatly active for no more than a few hours at a time, not the 9 or 10 hours that would be necessary. On the other hand, I sense that he will be endangering his employment if he takes much longer. This is not really a problem financially, but it would be a terrible blow to his outlook. Is there anyone out there who has had WBR and returned to work or (or any other type of sustained daily activity) that can tell me how long it took to do that and what it was like? The medical folks are not offering much in terms of insight. Any info appreciated. I just don't know how to look at this. Thanks!

Aaron, I have taken Lyrica for pain from a different condition. I did have vision problems and was taken off of it. Trouble concentrating? I would never know, since I've never concentrated on any single thing for more than 30 seconds in my life. However, that side effect is listed as a common issue with this drug in the literature. MC

Andrea, that is like deja vu for me - I have to do that at most of my husband's appointments as well. When he went to the Onc prior to being diagnosed with a brain tumor in April, the doctor asked if he was having any symptoms. He kind of said, no, nothing big. I had to intercede and point out that we were actually there because he had lost part of his vision, was having headaches, and couldn't stay awake. What is WITH these guys? Geez.

My husband completed WBR one month ago after surgery to remove a 3cm brain met. Side effects during and immediately after treatment were as expected: fatigue, a little difficulty processing information. About 2 weeks after treatment ended, he began to show some slow improvement. On Friday night (3 weeks after completing WBR) we were eating dinner and he had a sudden, brief dizzy spell and recovered. He then left (against my better judgement) for a week-long trip to Minnesota to stay in a cabin and fish with 2 close friends. I have spoken to him daily on the phone. Beginning yesterday, he said that he began to feel "weird in the brain" again and is having some dizzy spells and periods of confusion. Relevant or not, he is also having some diarrhea. I am wondering if anyone who has done WBR might know if this could be delayed reaction to the treatment, or if it sounds familiar? I am trying to find a flight to get him home today or early tomorrow, and we will of course call the doctor....but since I can't get him home right now anyway, I thought I'd put the question out there. I appreciate any input!