Terry

Joni, It's unfair Alex lost his Dad this young but he is blessed to have you as his Mom. How touching that the two of you can cry and grieve together. He must be as much of a comfort to you as you are to him. Hang in there and keep doing what you have been doing. Love, Terry

Thanks for the laugh. I really needed one. Terry

My dearest Ginny, In the few short months that I have been a part of this support group, the love story between you and Earl has had the most impact on me. It was all there – love, devotion, courage, perseverance, complete selflessness. The picture of the two of you always gave me a warm feeling in my heart. Now The Duke is gone and I feel incredible sorrow. Through you we have all come to love and admire this man. Through you he became a legend amongst us. With a heavy heart I send you my love and deepest sympathy, Terry

I haven't been here for awhile. My days are so busy and at night I am SO tired. There is tons of information here. I especially want to hear more about Jim's story. I have just started trying ProSure. I make shakes with it and it is one of the few things my husband seems to tolerate. It's expensive however, so I will try some of the other suggestions: Boost, Weight Gainer, ImmunoPower. If there is a connection between thyroid problems and lung cancer, what do we do with this information? My husband's daughter (my step daughter) has had her thyroid removed radioactively. What should she do, assuming she is at risk for getting lung cancer? I don't want to scare her without giving her something proactive to do. Maybe I should encourage her to get CT scans. It seems that what makes lung cancer so dangerous is that it is often not detected until it is very advanced. Terry

Has anyone heard about cancer treatments that use feeding tubes? Has anyone here been given a feeding tube? My husband is slowly starving. I doubt he gets more than 500 calories a day. How can a body successfully fight such a nasty disease when it is stressed from malnutrition? If he had a feeding tube, he would be able to maintain his weight, and have a better chance. Terry

I’m like you. I don’t post very much and I feel like I take more from this group than I give back. I figure some day I will be able to give back. Right now I need the help of these wonderful people. Don’t feel as if you need to apologize. Every one here understands. This is your precious “Mom” and it is, yes, heart wrenching. If you need to be there for her, so be it. Terry

Hi Maureen, If you want to get yourself prepared, you might want to go to www.irsa.org. This website has a lot of information regarding brain metastatic cancer. You will find articles about the possible side affects of WBR in detail that our doctors never gave to my husband and me. You will also find reports about studies that debate the value of WBR. One study suggests that there is no benefit to WBR, if measured in longevity. CAUTION: I found it very upsetting reading some of the articles, and I am the caregiver, not the one with cancer. The language doesn’t “sugar coat” anything. Just keep in mind that there are many people in this support group who have had WBR and are doing much better than what is projected in these articles. My husband had WBR. He has so many symptoms and side-affects right now that there is no way to tell what is related to WBR and what isn’t. What I can say is that before WBR he had horrible headaches and now the headaches are completely gone. My gut reaction is that as long as it is being offered as an option, go with the gamma knife. Only do WBR as a last resort. I can be very compulsive about detail. What I would do is go to the search engine of this support group and search for “gamma knife” and “WBR” or “whole brain radiation.” Read the profiles and posts of all the people who have experienced it. How many are “thriving”? How many are just doing OK? How many are really struggling? (Put my husband in the struggling category.) After awhile you will start to get a feel for what is right for you. I am envious that your doctors are even discussing gamma knife with you. Our doctors never mentioned it. I learned about the procedure from this website. I can’t begin to tell you how angry that makes me. I feel a special kinship with you because I have a 9 year old son. The fact that you are able to go skating with your 8 year old after having a gamma knife procedure says a lot about your strength and perseverance and a lot about the benefits (or lack of debilitating side affects) of gamma knife. Regards, Terry

Charolette, Wow. Two loved ones afflicted with this awful disease is just too much for a soul to bear. What is the doc giving your husband for pain? I know that back pain is horrible. Morphine is what finally relieved my husband's pain until the radiation to his spine started to take affect. My heart goes out to you. Terry

Well, we made it through the first 24 hours at home just fine. I am so proud of John. He not only accepted the hospital bed and commode but seemed to be grateful for them. I know he was dreading those stairs. I am relieved that he didn’t insist on being the hero and attempt them. I feel silly now that I was so panicked. Were it not for the support and encouragement of all of you, we would have conceded and signed up with hospice. No one at the hospital was telling us to keep fighting. Mostly they all looked at us with sympathetic expressions that seemed to say “Hospice? How sad.” Lisa O: “Please consider getting another opinion to separate the MRSA symptoms from the chemo symptoms.” RIGHT ON! It seems so obvious to me that most, if not all, of his reaction was related to MRSA, not chemo. Elaine: “. . . most insurance companies pay for in-home nursing care. . ., … do whatever you can to get the care you and your husband need …” I called hospice, told them we weren’t ready to accept their services, and expressed my concern that we were getting overlooked because the hospital assumed hospice would handle the transition to home. Presto. Just as John was being discharged from the hospital we were informed that both visiting nurses and physical therapists would be coming to our home. Thank you, God. Thank you, everyone. It feels so good to have him back home. I can’t believe that only yesterday I was dreading it. Terry

My husband was in terrible pain for a tumor on the spine. He had one week of radiation and he is now completely pain free! It does take a few weeks to take affect. You are on the right track. Terry

Welcome back. I was wondering what happened to you. Glad to hear you had the surgery and it went well. There is no place like this place for helping with the emotional pain. Terry

Thank you, thank you all. Were it not for this support group I don’t know what I would do. Here are answers to the misc. questions. What is his performance status? His ability to function has declined dramatically over the past 2 months. I would say it is at best 10%. It takes him 4 hours with my assistance to get up, washed, dressed and in his lazy-boy. We do it in stages. Eat bowl of cereal - rest for 45 minutes. Get up to brush teeth and wash - rest for 1 hour. Get dressed - rest for 1 hour. Go downstairs on fanny and move to chair, rest for remaining day, getting up only to go to bathroom. Going to bed is also a terrible ordeal. He has to take ativan before he can muster the courage to go up the stairs. By the way, I have taken steps to set up the downstairs so he doesn’t have to do stairs. I now have a hospital bed and commode in the living room. My husband comes home tomorrow from the hospital. He isn’t going to like the changes one bit. Did he get neupogen? I’m not sure. He was given a shot called neulasta to help build white blood cells. Is that the same thing? What about Iressa? The oncologist didn’t mention Iressa to us, so I finally asked him. He is not enthusiastic about Iressa, telling us how expensive it is and that it doesn’t help that many people. He agreed to give us a prescription “if that is what you really want”, but we have to wait three weeks or until John is recovered from the MRSA. What does your husband want to do? Sometimes he says he doesn’t want to give up. Other times he says he doesn’t want to suffer anymore and that he can’t live like this. He cries a lot. We have a 9 year old son and the two of them did everything together. I think it is important to note that John is now pain free. He is on no pain medication! When we started, he had horrible headaches and back pain. This indicates to me that the treatment has been effective so far. I asked the oncologist if he would do another set of scans. It would be nice to know how John has responded so far. The oncologist told us he couldn’t justify the expense of new scans unless there were new symptoms. We have decided for now to refuse hospice. I am both relieved and petrified. I am relieved that John is not giving up and petrified that we are on our own. Our insurance won’t cover home health aides so tomorrow I am responsible for the care of a very sick man. I know we should get a second opinion but right now my focus will be on getting through the week-end. You folks are my lifeline. Terry

Our oncologist referred my husband to Hospice yesterday and I am shocked. My husband has had 2 rounds of taxol/carboplatin. After the first round, my husband was hospitalized for dehydration and a low WBC count of 700. The oncologist decided to cut the dose in half for the second round. Again my husband was hospitalized for a very bad rash and a staph. infection (MRSA) which hospital patients with an impaired immune system are prone to get. Now the oncologist wants to turn us over to Hospice. He is not offering any other options. He won’t do another chemo. He won’t try any other drugs. He is afraid that another round of chemo, regardless of what the drug is, will kill my husband. This just doesn’t feel right to me. Isn’t it common to try another chemo regimen if someone has had a bad reaction? We were not expecting this at all. Terry

Wow, Joni, Your poignant post about Robert's funeral is an incredible tribute to the man and your love for him. I can't imagine what is what like to have actually been there. You have done him proud! We know it, those surrounding you know it, and most importantly, Robert knows it. Terry

Joni, How very sad I am to hear about Robert. You have been such a source of inspiration to all of us. I'm hoping we can return the favor and supply you with some small amount of comfort during this difficult time. Terry