mary colleen

I have special tears and compassion for each of you. I don't write much lately, because I'm not sure or clear on what is going on here, so I wait. I am especially hesitant to add worry to any here who may have paths like mine and my husband's. Regardless, I think of you each daily and THINK that I sense (long distance) what is probably happening inside of you, and how hard it must be. Please accept a huge hug from here. Know that my daily thoughts are truly with you each. MC

Thanks so much for posting this. I recall the true sorrow I felt when I read Cy's first post - sorrow over the unfairness of such a good young man with so much to live for being stricken like this, sorrow for his wife and new baby. I pray for his family and friends. Thanks again for giving us this glimpse. MC

Barb, sounds like you are doing as well as you can be. Hope you are not covered in ice down in Hickman today.

Pup, Yes, technically, brain mets are distant metastases and put a patient into Stage 4. However, there are many people who go on and return to normal lives and lengthy disease free periods after having brain mets. The SSA did tell me that the Stage 4 status will ensure that my husband is approved for SSDI benefits, and I think the same would appply to you. "FMLA" is federally mandated family medical leave, which entitles an employee to 12 unpaid weeks off work per 12 month period for their own illness or that of a family member. However, I am fairly certain that it does not apply to companies with fewer than 50 employees. I REALLY think that the best thing you can do to protect yourself is to get that SSDI app going and get approved. By the way, you can earn limited amounts after being approved without endangering the benefits. After applyng online, I found it very helpful to go to the SSA office and meet with someone - much of the documentation that the SSA website tells you that you must provide is actually unnecessary, according to my local office. You can find your nearest office on the SSA.gov website with a zip code search. Click on "about us" (up on top) , then "office locator". Hang in there - take care.

Teri, WOW. MC

Prayers. I know this is hard. MC

Pup - I understand how discouraged you must feel. My husband had a large brain met last April, and went through brain radiation as well. By the way, he had about the same length of interval between initial diagnosis and the brain met, and I was additionally discouraged by that as well. Couple of things I want to share with you: 1. You are just a short time out of the brain radiation, and for us, you are at the point that was just about the hardest. The delayed side effects of brain radiation hit my husband hard at about the point you are at, and I think we honestly thought that he would not ever get well. He has improved dramatically since then. Keep your eye on the light at the end of the tunnel, and know that it is there. 2. To say that I have done extensive research on brain mets with lung cancer would be a major understatement. I have read thousands of studies and abstracts. I have read so many that I now have difficulty finding any that I have not already read. That research gave me substantial hope. There are many lung cancer/brain met patients who end up doing very well for a long time. Do not be hopeless. 3. Why do you think that you have become a burden to your co-workers? To many of us, myself included, it's a pleasure and and an honor to help my friends in need. I'll bet they perceive no burden at all. I know that it's tough to be dependent at all, but that's what we are all here for. 4. Last, we are in the process here of applying for SSDI (Social Security Disability Income.) Our contact at the SSA told me that they will probably approve my husband retroactively to at least April, when he developed brain mets, and possibly to October 2006 when he was first diagnosed and began to work intermittently (surgery, chemo issues.) Whatever retroactive date they approve you for, that begins the ticking of the clock toward that 6 month waiting period. It also begins the countdown toward the 24 month waiting period for Medicare, which is very important - even if you don't really need the SSDI income, the eligibility for Medicare can be a tremendous help to folks carrying their own medical insurance. Please apply for SSDI. Since I have recently been through the loop, I would be MORE than happy to help guide you through the application process (much of it is online) if you PM me. Know that we are all here for you. Mary Colleen

Dick, I would guess this to be an anti-candidiasis (yeast, fungus) preparation. However, I cannot find it by this name either. Is there a number that you can call - like an "ask-a-nurse" line at the VA, so that you can ask how to use it? If not, just to get through until tomorrow, the major drugstores all have a lot of products in the dental area for sore throat pain. Maybe you can get something to help. Wish I could help more. Maybe someone else will know how to use it. MC

Bucky, We had a terrible tragedy in Omaha today, and I am going to a special Mass tomorrow noon for all involved. I will add you to the intentions. All will be well. XXOO MC

I'm in! MC

Bucky, So glad to see you back. Many blessings and prayers for your tests tomorrow. Mary Colleen

Aaron, when my husband experienced neuropathy, we we were told that he should take B-complex. It did seem to help. We were also told to let the clinic know if the neuropathy got out of hand or caused significant pain - they would temporarily slow down the treatment schedule if it did. Your symptoms seem significant enough to warrant letting the onc know about it. See if they can help. I'm thinking of you. mc

I'm so very sorry for your loss.

Love you Teri, that's all! Big hugs.

Vic is doing better than Harry right now, but he also tells people that he is cured. He even sat at the oncologist's office the day he was diagnosed with a brain tumor and denied having any problems going on whatsoever - and let me assure you, he was having obvious and frequent problems. I say nothing at all when he states socially that he is cured, because there is no real impact. I do speak up in the doctors office, however, because that does effect his treatment. I know it's a tough one to deal with. MC

Barb, I think one of the responsibilities of marriage is to make decisions in the other person's best interest, applying what you know about him, when that person may not be fully able to make those decisions. This is a tough one, but I know you'll do the right thing. You have my prayers. MC

Welcome Dick!

I've sure been where you are now, so I understand. I will repeat what Ry and others have said - as unnatural as it may be to you, as unconditioned as you are to it - you have to begin to say 'no'. You energies are being fully absorbed right at home. This is the first time in my life that I have made myself unavailable to take care of things for other people, and it was hard to stop, but essential. MC

I am so very sorry for the loss of your wonderful Mom. I echo so many others - we're here as long as you need us. MC

Well, you've been through a lot, and my sense is that you have a tremendous heart, which is a lot to say about anyone. You also have a gift for writing. It doesn't matter if she's been ill for 3 years, your feelings now are legitimate, and you are going to have them in your own way, no matter what. You keep being strong and loving, and it will all fall into place. Bless you, and prayers for your Grandma.

I just noticed today that I joined this board a year ago tomorrow. I wanted to take a minute to thank Katie and Rick for providing this gathering place for all of us, and to thank everyone on the board for being a part of it. Patients, caregivers, and survivors of all kinds - you've formed a wonderful community. I honestly would have known less than nothing about treatments, side effects, disease issues, options, tests, or anything else without this board. I certainly would have had no place to go on those tough days when there is really no one in my world that can understand my situation. Many of you have provided me with great examples of how to give care on a day to day basis under these difficult circumstances, which I sincerely appreciate. You'll all remain in my daily prayers. Mary Colleen

I am thinking of you and your kids every day. MC

All, You are all so right in that his identity was largely tied into his job, his excellence at it, the fellowship it seemed to bring him, and apparently, the paycheck. I personally really wouldn't care if my job went away tomorrow - though it supports us, I could easily find many other things to do that would make me very happy. My identity is not so much tied to my job. Vic is suffering in a way that I wouldn't, but I respect it. Maybe work just doesn't mean quite the same thing to women that it means to men (thanks for that viewpoint, Randy.) Though it's been a rough weekend for him emotionally, I THINK the sadness will gradually pass for him if he can find other meaningful activity. We have both always had an interest in helping children, and I'm going to try to gradually channel him in that direction. There are a ton of volunteer opportunities like that in our community, and very few men able to help. I appreciate all of your input. I just felt lost and unable to help. Please continue to keep us in your prayers. Many thanks! MC

I am so impressed and (now) so hopeful and inspired for my husband. Thank you for sharing. I needed this.

Thanks Randy - you add so much for all of us daily. Even in this kind of hard week, this made me smile.