sueliz61

Oh Judy, My heart is breaking for you. I haven't been in your shoes, but I have been my husbands caretaker for many years. I have found myself getting tired of so many things dependent upon his health. When it has gotten too much for me, I have taken a few days and gone away. This has always helped me get a fresh outlook on things. I hope you can find some support. Counseling would be good for both of you. Are there services in Gilda's Club that could help you? We have missed you. You don't always have to be positive. Please keep us updated on your health and situation. Many hugs coming your way. Sue

Eric I agree completely with Judy KW. You really must attend the graduation and the parade. After the "talking to" you gave your students, it would be terrible if you did not attend. I think we need to send you a date calendar, you are too popular and double book. I guess that is the price to pay for being such an entertaining fellow. Sue

Kristen, I am so sorry to hear about the difficulties and setbacks your dad is experiencing. The dialysis should help him feel better and get stronger so they can help him fight this cancer. Hopefully this is a temporary setback. I am sending big hugs and lots of positive thoughts your way. Sue

That was great Ned- Thanks Sue

Susan, I am so very sorry that you have lost your Mom. You will eventually be comforted knowing that you enveloped her with your love. I am so glad she was able to go home and have a peaceful passing. This happened so fast and you must be in shock. Words just don't come to me to express my sorrow. Sue

I wrote this as a post on Grace and thought that I would also post it here. I have written to both Ellen Degenerous and Oprah Winfrey asking for some mention of Lung Cancer awareness in November. Perhaps we should all bombard all the talk show hosts it might help to get the word out. It seems so uncivilized and childish to be envious of all the breast cancer awareness, but I am. I am also so grateful that there has been so many advances in the treatment for breast cancer. I have 2 aunts that are survivors and my dear SIL died from breast cancer. BUT my husband is dying from lung cancer and I want to shout at the world to help stop this terrible disease. Sue

Wind ( the thing that makes all the leaves fall quickly)

Leaves (and more leaves and more leaves) (We have 2 willow trees and they each have 2,000,613 leaves. I counted them!! lol)

Randy, You have my dream job! I love to bake, but can't even imagine doing what you do- I would probably gain 200 lbs. Great story and thank you for sharing - I need one of those danish right now!! Judy - I am sure there could be a compromise- sticky buns would surely lead to sweet kisses! Sue

Judy, Wow what a great break through. It is so wonderful that you are feeling good and upbeat. Living life to its fullest is the best - no matter what that entails. You go girl! As far as the computer problems, if you haven't thrown the mouse at the wall, you are doing good. It is always so hard to find out about all the stupid little nuances in new computers and upgrades. Makes me hesitate to get new things. I am so glad that this latest trip was and "eye-opener" for you. Enjoy yourself! Sue

Hello you wonderful people. I read the posts daily and thought I would update what is happening here. Kurt had his 5th treatment (almost half way point) yesterday and is feeling pretty sick today. He is able to eat but the nausea is pretty bad. We try to stay on top of it so I guess it could be worse without the medication. His blood work the past 2 weeks has shown that his kidney function is deteriorating at a faster rate than it has been. He has been on a down-hill slide for over a year now. They say his warranty on the transplanted kidney is up. There is not much data on transplants lasting over 20 years. He will have one more chemo and then a pet scan - we can then decide how to continue. His fatigue is worsening - drs say it is from combination of all his problems: cancer, chemo, diabetes, & kidney failure and that it will probably not get better any time soon, if at all. We had a long talk yesterday afternoon. I told him that he has been in a holding pattern - waiting for the chemo to make him better. I want him to start making short weekly goals of somethings to look forward to each week. They can be as small as walk to the end of the street ( Monterey Bay right there), or a drive somewhere. Anything to give him things to look forward to. (hate ending a sentence in a preposition). He is still somewhat in denial, but I think he needs some quality of life instead of this waiting for the things to "get back to normal". These past 2 years have been so hard on him and he has changed so much from the vital man that he was. We ran a sail making business together ( later changed to awnings for motor sports) and we had to abruptly give it over to our kids to run. I am thankful that they are able to take it over, but the abruptness of retirement has been hard on both of us. I am so glad that this site is here - it helps me so much. I will let you know the results of his scan. Sue

Ned Thank you for your kind words of wisdom. I am just playing it "by ear" and will discuss this with his onc next week. I guess I just feel too responsible for him at times. He had chemo on Thursday (Gemzar) and today is his first day of not feeling so sick. He gets fevers and aches all over for about 4 days after his treatments. He was originally going to have gemzar once a week for 3 weeks and then one week off and repeat. His onc decided that would be too much for him and has him on 1 week on and 1 week off. I think this is much better since his recovery is 4 days. We will walk to the beach after lunch and pretend we are in Hawaii. Our house needs to be tented for termites too. Would love to be in Hawaii for that! Again thank you - I love this site. Sue

Katie Thank you for your kind words and advise. There is really no confusion over his diagnosis- he was hospitalized many times last year when he had NHLymphoma and the hospital is going by those records. He was only there for a blood transfusion. I go with him to all his appointments and since he can't understand people on the telephone - I handle almost all his communication. His dx is definitely NSCLC - lllb - squamous cell. I think that I will have him talk to his onc next time we see him so he will know that he is confused about his diagnosis. This may also be his way of dealing with it. He has so many health issues and has never wanted to dwell on the fact that he has problems - although he has been good about following drs orders. Thank you again - and have a great week-end. Sue

I have not posted since my first post in April, but I do read others posts frequently. I almost feel like I am eavesdropping and I intent to post more frequently in order to feel better about reading others posts. My husband completed his radiation in April and had a ct scan the beginning of May. It showed a "slight" shrinkage in the tumor in his lung and did not show any new masses or enlarged nodes. The lymph node on his clavical has shrunk a great deal and is now very small- this was not referred to on the scan report - just visual. He is now doing chemo which consists of Gemzar every other week with a week of rest in between. The drs feel that this is the best thing for his kidney which has been showing signs of distress. I asked Dr. West if this would be his recommendation and he said that it would be standard for his situation. His red count is very low and the doctor ordered a transfusion yesterday. He had 1 unit yesterday and 1 unit today which brings me to the reason I am posting. The hospital still had his dx as non-hodgkins lymphoma and I told the nurse that that was last year. This year it is lung cancer. He then told her that it is not really lung cancer but the dr is treating him for his lymph node and a growth in his chest. After the nurse left, I asked him what he meant and he said that since his bronchoscopy dx was negative for malignancy he did not have lung cancer. I should point out that his hearing (which was bad to begin with) was further damaged with the chemo he had last year and even with his hearing aid he has difficulty understanding what people say. Anyway I was very troubled by his remarks. I told him again what his oncologist has told him about his dx. He said that since the biopsy was of his lymph node that it isn't lung cancer. I explained to him that that is how they determined his mass in his lung is cancer along with the suv reading. I also explained that we would not know how active the mass is now until he can have another pet scan. This is NOT the first time he has been told this. I am troubled by this and I can't explain why. He has not argued about any treatments and when the onc gave him a choice of chemo or "wait and watch" he chose chemo. Any advise on how to handle this would be greatly appreciated - do I just continue to repeat or just ignore. Is ignorance bliss? Thank you all for your replies to my previous post. Sue

I have been reading the posts on this site for some time now. I have found them both helpful and hopeful. My husband is in his 6th week of radiation for nsclc and has not been feeling well for the past 10 days. His fatigue has increased tremendously and has had pain in his shoulders. He has been running low grade fevers every night - 99.7 to 100.8. He gets weekly blood draws and his white count is low but within an ok range. His Oncologist thinks it may be side effect of radiation. His kidney dr does not think it is related to his kidneys. His radiation onc says nothing to worry about. He has too man drs and it is easy to say Nothing to worry about, but never the less it worries me. He is very weak and his appetite has decreased. I was wondering if this is a typical side effect of radiation. He is being radiated in his supra clavical and also in his right lung. Thank you Sue