Barbara Lea

My husband was diagnosed 2 years ago. Unfortunately I have to work to help with bills and I carry our much needed health insurance. We also have 2 children in college. I have taken time off here and there to go to dr. appts., even if just a few hours at a time. When he had surgery I took a few days. My business partners growled at first, but then one partner's wife had a heart attack and by-pass surgery. He is now more understanding. Jim is now stage 4 and under Hospice care. he is still able to be alone during the day. I only work 1 mile from home so I can run home at lunch or if he needs me. His siblings stop in and spend time with him when they can. As his disease progresses I'm sure I will have to take a leave but will also have help from his sibs. If my income wasn't necessary I would take leave now, but it just wouldn't be financially feasible. I spend my evenings and weekends with him as much as I can, have cut back my outside activities. If you can take the time to be with mom now cause you never know what's around the corner. Take care. Barbara Lea

Nyka, Your husband and mine must be distantly related. Jim doesn't always want to do as the dr. ordered. He did let me call 911 the am of his pulmonary embolism when I almost lost him, but once they got him stable in the hops. he started griping I should have "let him go". He has had a few mini episodes since the major one, it is very nerve wrecking watching and waiting to see is something is going to happen again. I finally sat him down the other day and asked him point blank what he wants me to do if another "big" one hits him again. He said he wants me to let him go, I agreed to abide by his wishes but told him I won't let him suffer so I will put him on his oxy. and call the hospice nurse. I will be praying for you to have strength to cope with his illness as I know exactly what you are going through. Don't know if you are working, I do still have to work 40 hrs/week, so that is my "break" from home. Take care of yourself. We will get through this. Barbara Lea

Jim had a bone scan on 6/14, woke up the next am with the right side of his chest bright red, warm to touch, tender. Dr. wasn't sure what it was from, didn't think it was from injection for bone scan, it would have spread all over if a reaction. It has now been 11 days and the brightness has not dimed at all. He has been complaining of pain for a few months along his lower ribs, and there is now an almost dark purple path through the redness along the rib line where he has had pain. The bone scan showed no mets to ribs. Someone has suggested cellulitis. Does anyone have any thoughts on this or any experiences with it? We go back to dr. tomorrow for a follow up. Could it be an infection of some kind? I also heard about a form of breast cancer that almost fit his symptoms to a tee, inflamatory breast cancer. I will ask dr. about this tomorrow also. He did check Jim for lumps in his breast. Well, went back to dr. on 6/26, still no idea about redness. Sending him to dermatologist. Checked his legs, one swells by nighttime. Did doplar, possible clot, Jim refuses bloodwork and suggestion of blood thinner. 7/5 Went to dermatologist, she is also stumped. Jim insists he has been burned by too many xrays and bone scan, she doesn't think so. Her feeling is possible tumors infiltrating through to the skin. Wouldn't this show in bone scan if it had to go through ribs? Would this type of thing show in a PET scan? She wants to take biopsy from under surface of skin, he refuses. Any one have any thoughts? How do I help someone who won't help himself? He is so set that he has been burnt and the whole medical field is working together to lie to him. Sorry for the rambling, but I am at my wits end with him and his attitude. I know he doesn't want to go through treatment and I'm fine with that, but don't complain about these other things and not take the dr's suggestions. Any thoughts or prayers are welcome.

Jim had a bone scan on 6/14, woke up the next am with the right side of his chest bright red, warm to touch, tender. Dr. wasn't sure what it was from, didn't think it was from injection for bone scan, it would have spread all over if a reaction. It has now been 11 days and the brightness has not dimed at all. He has been complaining of pain for a few months along his lower ribs, and there is now an almost dark purple path through the redness along the rib line where he has had pain. The bone scan showed no mets to ribs. Someone has suggested cellulitis. Does anyone have any thoughts on this or any experiences with it? We go back to dr. tomorrow for a follow up. Could it be an infection of some kind? I also heard about a form of breast cancer that almost fit his symptoms to a tee, inflamatory breast cancer. I will ask dr. about this tomorrow also. He did check Jim for lumps in his breast.

Husband Jim informed me last night that his face and skull are numb from his nose around to the middle of the back of his head on the right side. He can hear out of his ear and eyesight is ok. He has had no tests since PET in Sept. except on pelura fluid which is malignant. PET showed nothing in Sept. Could this be something of concern? He won't call dr., has chosen no treatment anymore. Also having new aches from breastbone around to back and in right breast (he had upper right lobectomy 15 months ago). Any thoughts?

Jim did go to an eye dr. for the first time in his life on his 47th birthday in Feb. He has been having trouble seeing up close to read. His eyesight has always been excellent. We asked eye dr. if he thought chemo would have affected his sight, he said no. Didn't even consider possible mets causing his problems.

My husband Jim is stage 3B nsclc. We were told in early Jan. that his pelural fluid is malignant. He has not had a pet scan since Sept. 06. He has chosen no treatment at this time, wants to ride it out. Dr. told us with no treatment this fluid will spread the cells. He is still fairly healthy, went back to work last June, got laid off (sick man on the totem pole) and we started a business in November to keep him occupied. Lately he has been more aggitated then usual, the simplest things setting him off. He was never a totally pleasant person (cup always 1/2 empty) but he is getting worse. He repeats his conversations often. He asks me and kids to help on the tool truck, then does or says something totally different and yells at us for trying to help. My concern at this point is without any kind of scan or testing how would we know what to look for if the cancer is spreading into the brain? He doesn't want any more tests of any kind to see whats going on inside, just doesn't want to know. But, as his wife and the one dealing with his "mood swings" I just would like some input on what may or may not be happening? If someone can give me some signs to look for if it is spreading to the brain, at least if I think he's showing these signs maybe I can talk him into getting a test. At least if we knew something was happening we could "accept" his behavior and help him instead of getting mad at him for it. My 17 year old has already moved out because of him and I don't want to loose my 20 year old too. Any imput would be appreciated. Barbara Lea

Dear RosLock, Your message hit me like a ton of bricks. I could have written it word for word, especially after this past weekend. Luckily I still work 40 hrs. per week and can get out of the house and away. I try to stay active in my church where I have lots of girlfriends for moral support and I go to Curves 2-3 times per week to destress also. Actually, Jim is still working too, but very tired and not very happy every night. He is in stage IIIB and is refusing treatment at this time. He has had surgery and chemo, and doesn't want to go through any of it again. He just wants to ride out his life feeling good while he can. He was never a totally pleasant person before cancer, and the sickness has multipled the unpleasantness. I am so sick and tired of hearing about my "stupid" cat and our 17 year old daughter that I'm not raising right. We also have his lazy 27 year old son living with us, our 20 year college going son and his girlfriend and 2 8 month old lab puppies. I think between the sickness and crowded house we are all at our wits end. "Sometimes I want him to die sooner rather than later to get this over with whilst we still have a marriage." I said these same words to my best friend just this am while I was bending her hear about my bad weekend. I don't think we're bad people for saying/thinking this, just frustrated with the hand we've been dealt. Hang in there and I'll try to do the same. You can email me at blcjcc@aol.com if you feel the need to vent some more to someone who totally understands. Barbara

Grace and Girls, My thoughts and sympathies are with you all. May God give you the strength and courage throughout the next few days. Take care of yourselves.

Grace, Praying for God's comfort for you and your girls at this time. I can't imagine what you are going through and I admire your strength and courage. I only hope that I can be strong like you when the time comes with my husband who has chosen the path less traveled. Sending prayers and hugs. Barbara Lea

Husband Jim (soon to be 47) was diasnosed 11/05 nsclc, had upper right lobectomy 12/19/05, 4 rounds of carbo/taxol spring of 2006. NED 6/06. PET scan 9/06 showed few new nodules in left lung, pelural effusion, Jim wouldn't go to dr. for follow up visit. 12/14/06, sob, shoulder pain, thorasenthesis of pelural effusion performed, 2 bottles of fluid removed. 1/3/07 happy new year, fluid is malignant. Bone scan shows something suspicious in left iliac area. Trying to get Jim to go for CAT scan of pelvic area to identify, not budging. Pul. Dr. wants him to return to Onc. for more chemo. As of today, he is undecided. Has stated ever since he finished chemo that he would never do it again. He is a self-proclaimed hard headed redneck. I know it was the worse thing he has ever experienced, but he never got sick, just nauscious, no appetite, tired, total hair loss, etc. After chemo he gave up his job as a heavy equipment mechanic and in Nov. we started up our own business as a MAC tool distributor, figured it would be better on his body and health. I know part of him is choosing no treatment so he can keep the business going, but as the dr. told him, if he chooses no treatment, he won't be around to run the business. Our college son has rearranged his classes to night time so he can help dad and takeover if needed while he gets treatment. This still hasn't convinced him. Right now he looks and feels good, and I can understand his point that if chemo every 6 months is going to buy him another 6 months, is it worth 6 bad for 6 good? I am trying to be strong for him and told him I will stand by whatever decision he makes. But.....its so hard to stand back and wait. His 27 year old son showed up on our doorstep at Thanksgiving needing a place to stay. My son's girlfriend moved in 2 weeks ago because of family problems at home, and I have a 17 year old "drama queen" daughter. Plus we have (2) 7 month old lab puppies. We live in a small rancher and the craziness seems to never end. However, I just keep thinking that God has a plan sending me all these extra kids and puppies. His 27 year old was absent through most of his illness, so maybe there is a reason he is here now. This may be the time I really need him to help with his dad. Anyway, sorry to vent. I felt so strong the first time around, but this time I feel like a walking time bomb. Every song makes me cry, etc. I'm trying to be realistic in case he does decide to follow the path less traveled, like getting his inventory of tools, guns, will, etc. in order. I'm trying to get him to do things together that we haven't done in ahile, "just in case". We are going to Nashville next week for a tool fair, 4 days away from the madness of home. I have talked him into going to see Trace Adkins at the Grand Ole Oprey while we're there. In the past I would have to beg him to go. I think maybe he's thinking like I am, make some memories. Anyway, thanks for listening. If anyone out there who is on this path can shed some light on his view I would very much like to understand what he's thinking and going through. I know he is confused, scared and angry, so I am. I just feel so helpless and want to be able to help him on this journey.

Flowergirlie, I feel that I could almost have written your post. I am in the same position as you as a caregiver. My husband is not quite as ill as yours at the moment. He had 2 bottles of fluid removed from a peluraal effusion last week. I called the dr. office for results of the biopsy, which they faxed to my office. Unfortunately the fluid has tested positive for malignancy. I am crushed because Jim has already let me and the dr. know that he will not endure anymore treament. I have kept this news to myself for a few days, as his next visit isn't until 1/3. I would really like to keep quiet until at least after Christmas. He had a lobectomy last year on 12/19, so that Christmas was a downer, would really like this one to be better, especially if..... Plus, his sister who is 45 and has been a widow for 20 years got engaged the other day and I really don't want to rain on her parade right now. Are we being selfish or strong??? I don't know. I do know that once he knows and makes his final decision I will cherish every day like a gift. Take care of yourself and stay strong. Barbara Lea

Thanks for the info Randy. It helped clear some things up. I am finding that with this disease there is always something new around the corner to learn. Thanks again.

Husband Jim had a thoransenthesis (sp ??) this am to relive pleural effusion. Dr. removed 2 quarts of fluid. I did not get to see dr. to ask questions, so here I am. I understand what a pleural effusion is, but where does all the fluid come from and will this keep reoccurring? What happens if he doesn't have it removed? He has been stubborn through his whole diagnosis and treatment, but did agree to the procedure today only becuase he was having sob, tightness in his chest and extreme shoulder pain. When he had surgery last Dec. he had cancer cells in the pelural fluid, thats why he had chemo. They will biopsy this new fluid. Dr. did mention that if fluid builds up monthly he can put some kind of powder in there to buid a wall. Any input would be appreciated. [/img]

My husband Jim (46) was the same way when diagnosed almost 1 year ago. Very negative about everything, didn't want treatment, but we talked him into a lobectomy, 4 treatments of chemo and he stopped smoking. He wouldn't take anything for his anxiety, but I must say he has gotten better over the months, especially after the chemo ended and he was feeling more like himself again. We have 2 kids, 16 and 19 at the time of diagnosis. They just learned to hibernate when he was in one of his "moods". I am normally a very quiet, tolerant person, but when I finally had enough I let loose on him. I too had to continue to work a full time job, plus take care of him and the kids. He had to know that cancer wasn't just his problem, but the whole familys. He seemed to chill after that day. Once he went back to work it seemed to take his mind off of his health also. He is now feeling better then he has in a year and training for a new job. Give your husband some time to soak it all in, it is a lot to swallow at first. Also remember to take care of yourself. I know firsthand that dr. visits, working, mothering, etc. can wear you down very quickly. I've tried to keep life as normal as possible and take one day at a time (a long soak in our new jet tub doesn't hurt either). Hang in there and just love him. Barbara Lea