mary colleen

Teri, you go to England and know that you are a very permanent and needed part of the family, and that you now represent both you and Bill. What an honor! MC

Welcome Patty - as previously mentioned by Welthy, you are at a really great treatment center. Get your fightin' self up, stay angry, and just harness that to fuel your journey. As Connie said, this is simply a new norm - you can do this. So many here have. Stay with us here for information and fellowship. You'll do fine. Mary Colleen

Bucky, you're a friend to so many of us here - I hope that you will lean on us as much as necessary. "Stage 4" is nothing more than words. I wonder if that person who made the recent negative comment to you started this worry? You are a vibrant person with much life left to live. As you mention, you feel well. What a blessing! Please take it one day a time, and be 'mas tranquila'. Love, Mary Colleen

Very nice. Thanks for sharing that.

Teri, I cared for my Mom for a long time in her final illness. It was logistically hard for me - I was working full time and still raising 2 children, and honestly could not miss seeing her for even a single day due to her needs. I was sometimes frantic with stress and know that at times, I didn't give her my true full attention. This was for reasons that now sound silly to me, like worrying about being home in time to get my housework done, or feeling too tired. Once she passed, a lot of those moments came rushing back to me, and I felt like kicking myself. I felt like an idiot for having rushed her bath or feeding, or curtailing conversation with her so that I could get my own (meaningless) things done. I've simply coped by gradually realizing, knowing, somehow, that she now understands and forgives me. I really feel that somehow, and I believe that it's her telling me. As for you and Bill - I've seldom witnessed anyone rising to the occasion as you did for Bill. You poured concern, hope, and compassion on him. You modeled a lot of traits that I learned from, even at this distance. You have nothing to regret, except that his illness happened. I think that he sees and understands everything about you now, and has only love and appreciation. MC

Hi Mike, Welcome aboard. Keep us posted as your traverse this road - we are all here to help and listen. Mary Colleen

Teri, thanks. We are going into the Onc on Tuesday for labs and an brain MRI. They are concerned about thrush, and also about maybe edema in the cranium resulting from WBR. He does seem to have a coating on his tongue. Wish us luck!

Thanks all. I have a call in to the Onc's office, but had to leave a voice message. I am hoping that they will call back today, but at this point, I doubt we will be seen until Tuesday. I made my husband get on the scale this morning before I left for work, and was very suprised and upset to see that he had lost 17 pounds in perhaps 3 weeks. For the first time in 25 years marriage, I didn't try to persuade him to let me call the Dr. for him, I just told him we were doing it, and he didn't resist. If we can just get over this hump, I'm sure things will improve - clean recent CT makes me think/hope things can't be too bad! MC

My husband has stopped eating. This has come on gradually over three weeks or so. He's not really ever hungry anymore, but is willing to try to eat a couple of times a day. Unfortunately, for reasons we cannot figure out, everything tastes horrible to him and he cannot get past a bite or two without feeling ill. He thinks everything is horribly salty or rancid. We've tried everything from cottage cheese to plain baked potatoes to bland smoothies. He's lost several pounds in the last few weeks, and was lean to begin with. I'm calling the onc office in the morning to get some advice, but I'm not sure what they can say - he had a clean chest CT 4 weeks ago. Is there anyway this is a rather delayed effect of the WBR that ended on 6/22? Any advice at all appreciated. Thanks!

To be honest, I've never heard of lymph nodes not being being resected and checked...but I know very few people who have had wedge resections. Perhaps LN resection is not part of wedge resection. I am pretty sure that if you go on and have the lobectomy and have any positive lymph nodes, you would be evaluated for radiation and/or chemo. I guess my key question would be why they are asking you to come back for a second surgery, rather than having done a lobectomy in the first place. That would help to guide my thinking if I were in your shoes. Best of luck - please keep us posted.

As the others have said...Hopkins is a great place to be. Many prayers. MC

Michelle - I understand how you feel. Please know that a low white count and the other symptoms are pretty common for this stage in your Dad's chemo. Many on this board have gone through the exact same things. The Oncologist may give him a shot of a med like Neupogen or Neulasta to help with that count, and delaying the next chemo treatment is also a normal step to give him a chance to rebound. Though unpleasant, this is medically manageable. You may want to take a look at www.chemocare to get information on this and other issues related to chemo. Take care, and stay in touch with us!

Thanks Bucky. He finished on 6/22.

Bucky, thank you for the information. How long has it been since you finished WBR? Thanks!!

Teri, Your message isn't depressing, at least not to me. I love that you share it all with us here and I think that we all benefit from your insights. I also think that you are doing just great from a functional standpoint. The inner storms are harder to weather. You will weather them, of course. Please take good care. MC

My husband finished WBR on 6/22, and thankfully had a clean chest/abdoment CT on 8/10. He had struggled through June and part of July with the usual fatigue of WBR, then seemed to improve for 2-3 weeks; I thought that we were starting to come around the bend. For the last couple of weeks, symptoms have grown worse again. His need to sleep has skyrocketed, he has completely lost his appetite, he has ongoing vague nausea, he has essentially stopped 95% of actvities, and he seems to have odd moments of (for lack of a better term) sensory confusion. For example, he thinks that I have oversalted his food when there is actually no salt in it...he thinks that TV commercials are using the color red way too much all of the sudden....and he thought that one of our matching dining room chairs was suddenly much heavier than the others - that maybe I had done something to it. I know that these things sound kind of silly, and I'm a little embarassed for his sake to put them in print. I don't want to compromise his dignity. I decided to put it out here anyway in the hopes that someone who might have had brain radiation might tell me that they had similar experiences(?) He is not sharing these experiences at all with his oncologist, and even tends to deny them. His next brain MRI is scheduled for 9/28. So - any similar experiences from anyone who has had brain radiation? Thanks so much to all of you!

My husband completed 20 sessions of WBR on 6/22. He lost all of his hair after about 12-13 treatments. Like Bucky said, no big deal there. The most significant other side effect was ongoing fatigue after about the first week of treatment, and persisting for about 4-5 weeks. He did some normal activity during all of this, but on a pretty limited basis. Other side effects have been a loss of appetite, an occasional sense of fullness within the head, irritation to the irradiated areas of skin, and some inner ear irritation. No significant pain, no significant mood swings. My husband did recover quite a bit of his energy and other functionality about 4 weeks after WBR. He is currently showing a resurgence of symptoms, but I'm doubtful that this is attributable to WBR. I'm telling you this part because you may see a new post from me describing to the board what is currently going on - don't want you to think that this has been continuous since the WBR. It was all "doable", but it's good to be prepared for the side effects. I do read once in a while of someone going through WBR with virtually no disruptions. Best of luck to you.

Oh...Doctor, my EYES.....

Good for you, Kelly - you are giving even when you really need, and I'm sure the kids are better for you being there. Congratulations!

Major groan......

It's got to be pretty frustrating and isolating to you to not have all of the information that you would like. I guess my main questions would be whether your Mom is in Stage 2a or 2b....and specifically why surgery is not an option. I'm sure though, that if you knew, you would have included that info. It's good that you joined the site. You'll find lots of support and information here, and will know that you always have a place to come for company and information. Welcome aboard, and stay in touch.

Bucky, that's ridiculous! Some people are just ignorant. Just move on, it's not worth your time. Mary Colleen

Ry: I don't know anything about this one. However, I'd guess this a pretty trying time for you both and I will certainly keep you in my thoughts and prayers. MC

I agree. He is currently on short term disability that he has paid for as part of his benefits package, and he still has long term disability that he has not begun to use (his short term runs out in about a month.) I assume he would be eligible to continue his insurance through "Cobra", or that I could switch him and my daughter to my employers insurance by electing "family" coverage during out "open enrollment" period in November. I'm not sure on either of those, and it's of course one of the biggest worries. Thanks for the tip. This is confusing. We have always both worked hard and steadily - this is not something we have ever had to think about. On the other hand, I just cannot see him going back to work full time at anything demanding. Between the vision loss, the fatigue, and the fact that he becomes easily overwhelmed and confused since the WBR, his options right now are limited.

Thanks so much guys! It helps a lot. I had no idea how to even begin. Thanks!