mary colleen

Mike, My husband Vic had a thoracotomy 13 months ago and has similar pain. We deal with it at least every few weeks. I don't think that "you know who" is returning for you...It could easily be nerve damage, etc. from surgery. Please tell me if you are ever coming up to Omaha. I'll try to meet you for lunch or dinner. Mary Colleen

I really have nothing to complain about - my husband is stable right now, as far as we know. Scans in a couple of weeks, and I of course expect them to be good. I'm just very sad about the last few days. Somehow, someway, he didn't understand that his job had let him go earlier in the week due to his extended illness, and I had to tell him on Wednesday night. He was stunned and confused, and has been very, very upset since - broken hearted, actually. I may have mentioned here in the last couple of months that he has some trouble understanding everything said verbally the first time or two; this is either the brain tumor effects, WBR effects, or the overall illness combined with all of the above. He's very, very smart about a lot of things (way smarter than me), and still is, but is struggling a bit in some ways to grab everything that is said to him. He spoke to his employer on Tuesday, and I spoke to them on Wednesday to ensure that insurance coverage was taken care of. At that point, I understood that his employment was over, but he had not understood that. It was a terrible blow to him. He actually cried. He is still very emotional. I feel so badly for him, and for what his job meant to him in terms of enjoyment and pride. I also know that we are very lucky, relatively speaking - so much sorrow and true loss here lately. Just wanted to put this into words, and ask for prayers that I can help him find peace and purpose in this. Thanks all! MC

Robin, I'm sorry that you're having pain, but glad that you are willing to have meds for it. My husband has had the fentanyl patch for two different stretches of time, and had no real problems with it. Like you, he did have stomach problems with oral pain meds. He found the patch very helpful for the pain. Why not give it a try and see how it goes? Take care! MC

Ken, Large cell is just another variant of non-small, but occurs a little less often than adenocarcinoma or squamous cell carcinoma. As far as I know, the treatment approach would be the same - more dependent upon stage and location factors than on cell type. I think it's great that your brain scan was clean, and that your doctor is hoping to do surgery down the line. Both are positive factors. Believe in your doctors optimism, and get ready to give it your all. Now that you have a diagnosis and an action plan, you can start beating this thing into oblivion. MC

I'm stunned, shocked, and deeply, deeply sorry. I can only offer my prayers.

Not sure why, and not even sure why I'm writing this down, but I have had the most creeping sense of trepidation lately about my husband's condition. It feels as if there are subtle changes in his overall well-being, but none of them are obvious red flags. I wonder if it's just because I am deeply involved this week in switching him over to long term disablity (from short term in his private policy), as well as working on his application for SSDI, and doing all of the other business things I need to do to severe his financial ties with his employer....rolling the 401-K, finding a new health insurer, etc. All of the sudden, it feels as if we are not in some temporary bump in the road, but are actually approaching the end of a road. He SEEMS relatively well, considering. However, every little thing (his back aching, a little extra fatigue, etc.) seems to be scary to me now. We have scans coming up in a couple of weeks, so maybe this is the dreaded "scanxiety"?? I think I've just spooked myself. I have to be very careful not to pass that onto him through my over-anxious reactions to things and excessive probing. Well, I feel better having written it out. This too, shall pass, I guess. Thanks all. MC

Shelley, May not be relevant, but my husband had significant blurring of vision with his chemo, as well as swelling of the optic nerve (which probably caused the blurring.) He was on steroids and cisplatin/gemzar. Best of luck to your Mom!

WOW. God Bless!

That is the first joke I have laughed at in a long time! Forwarding to my 25 year old son!

I agree with Don - you might be getting ahead of yourself here. It's very tough not to do that when fear is involved, I know. My husband's first PET did indicate and SUV of 19 (yep, I know, quite high) for his primary tumor. I don't know much, but I have seen literature mention SUV ranges up to 22 in lung masses. However, it COULD also be some type of non-malignant inflammation. You just don't know, and you really don't know if it is 3B - sometimes those "additional findings" (areas of lesser uptake, etc.) are not malignancies at all all. Wishing you the very best of luck.

Thanks all - as always, everyone has been very helpful, and there are lots of good tips and suggestions. I am going to take a few days off from thinking (why do I always suddenly get "tired" and want to take a 3 day nap when these things happen??) and then just get on the necessary research and paperwork to figure all of this out. I guess in thinking it over, I really wonder if he was too much of a financial load on the company's group health policy - not sure, but I think it's possible. I think that we sort of looked at his returning to work as a reachable end point that would signal some return to normalcy and wellness. Oh well - removing that in no way impacts his getting well and beating this someday. Thanks to everyone. I appreciate the help. MC

Debi, as always, you know exactly what you need to do and how to execute your priorities with strength and love. I would expect nothing different from you. I have thought of you daily since Tony passed, as I'm sure so many others have. You are a beacon of light, and we've always been so blessed to have you here. I'm also thinking of your children, especially your youngest son, and wishing peace and comfort for them as they negotiate this difficult course. Mary Colleen

My husband Vic has been at home recovering from brain surgery and brain radiation for the last few months. He went out to his workplace yesterday to discuss coming back part time until he could transition back to full time, and his boss told him that they really "don't have a place" for him anymore due to his medical restrictions. He lost some of his vision due to the brain tumor, and for now can't quite make it a whole workday without taking a nap. He also has a few other problems, like becoming winded on exertion, and having difficulty with things like reaching overhead or lifting. Still, he would do anything to work a bit, and I know he would work around any limitations if given the chance. Though he won't say it, I know this hurt him quite a bit. I think it also shocked him, since he is a stellar employee and has kept in touch with his boss regularly while out. Anyway, I assume we will lose his medical insurance. Not sure how the private disability insurance will work now - it's through his employer, though we have paid the full premiums since he took leave from work. We're fortunate in that I can earn enough to cover us financially, but the insurance issues are really a worry. Both he and our college age daughter are on his group plan. Aside from the insurance concerns, I feel very badly for my husband - he was blindsided, thinking that his return would be very welcome. The tough part is that he is tired of being home alone all day, has plenty of skills, but just lacks some of the physical abilities he used to have. I guess I'm just thinking out loud here - not really looking for help or advice. I know that many here here have dealt with these issues themselves, and that this is not unique to us. I just wish that we lived in a world where insult does not have to be added to injury, especially for the sake of the dollar. As a business person, I understand business needs, but.....I have found that I can always acommodate special needs for good people if I dig deeply enough. We'll figure all of this out, I just wanted to put it into words. It seems like a lot is lost to cancer. Thanks all

Jack did his job. What a beautiful story. Last winter, when my husband was midway through chemo, and really suffering with the side effects, he would have to stay home alone all day while I worked. He was sick, scared, and depressed. I have always had a cat or two, and my husband has always barely tolerated them. One day, a hungry little stray tomcat, about 9 months old, showed up suddenly in our yard and insistently followed me in from work one evening. He immediately went to the sofa, where my husband spent most of his time laying down all day. He positioned himself on the arm of the sofa, reached his paw out to touch my husbands leg, and simply watched him. I fully expected my husband to tell me to put the cat out. Instead, he just allowed him to remain as he was...the sofa arm became his usual station for the next several weeks. He never really became active until my husband had recovered from chemo many weeks later. It was as if he was sent to provide care and company to my husband during that difficult period. We of course kept him - had no choice after what he had done for us. He and my husband are constant companions, and he follows my husband all over the house and yard like a loyal dog would. He actually provides a lot of joy to our household at a time when we need it. I believe in angels, and believe that help comes from the most unexpected sources when we least expect it. I'm glad that you had Jack.

My husband also had stage 2B, though it was squamous cell rather than adenocarcinoma; treatments are essentially the same. My husband had Cisplatin and Gemzar, a very similar regimen. The side effects were pretty mild for the first 2 or so cycles, and became significantly more pronounced in the last couple of cycles. That pattern seems to be pretty typical, since the drugs do accumulate, and thus pack more punch, as time goes on. The first couple of cycles were like having a mild flu bug about 3-4 days after each infusion. In the final cycles we began to see problems with blood counts, platelets, etc., and he had general body pain, weakness, etc. No major nausea. We stayed ahead of some symptoms by taking the nausea and pain meds ahead of time. The hospital will do blood work with each treatment, and will watch counts carefully. If those counts are outside of certain parameters, you may have a treatment delay while those counts are corrected with things like Neupogen or Neulasta shots. Those shots cause side effects of their own, and kind of add to the whole syndrome. If I had it to do over again, I would simply be ready with all prescriptions, ensure all the quiet rest that your Mom may need, and have some nutritious foods on hand that are easy to tolerate. We used lots of Ensure, cottage cheese, ice cream, etc. Hope it all goes well - keep us posted, and ask any questions on the board that may occur to you. Someone will always help! MC

Well, this does seem like a lot of waiting. How very difficult for you and for your Mom. I can't guess at the best thing for you to do, but personally, I would wait until that biopsy is in to make any decisions. IF it is positive for cancer, you will of course then get staging and a treatment plan nailed down, and you could determine from there what the best course of action is. Maybe your Mom doesn't have cancer. Even if she does, maybe it will be a very early stage, requiring surgery and little treatment after that. I sure hope one of those scenarios is the case, and I'll pray for that to be so. Don't jump ahead too far here - take it one step at a time, however excruciatingly slow those steps seem to be, and stay positive. We're all here with you - keep us posted! Mary Colleen

My heart is with you.

I am so very sorry. Mary Colleen

I am so happy for you! Now go have a happy weekend!

Teri, I think of you everyday. You're the picture of strength and fortitude. Mary Colleen

Terry, I am so glad that you posted. I think of you and Flo often. Get the darn port- my husband has, and he didn't want it, either. Once he did, he never thought of it again. Neither did I. Please post more often! MC

Welcome.

((((Welthy)))) My heart breaks for you. This hurts. I assure you that he was met by angels, just as in life he was accompanied so very steadfastly by the angel that he married. Love, Mary Colleen

I am so happy for you. Congratulations.

Hi Barb, I am in Nebraska (Omaha) as well. Welcome to the group. (I guess that you, Mike and I are the "Cornhuskers" here.) My husband is 52 and has stage 4 squamous cell LC as well. There is hope and friendship here, I'm glad you joined. Mary Colleen