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    Gilda's Club volunteer, working at the church volunteering, loving life in it's fullest

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  1. Eric, I am so very sorry. Sending you a hug and a kiss from this side of the pond. God bless you and your family as you deal with this horrible loss. HUGS. Judy
  2. Hi Patricia, In 2007 my left upper lobe was removed and I had adjunct chemotherapy without radiation because there was no evidence that cancer was in the lymph nodes or elsewhere. In 2012 my right upper lobe was removed because they found a NEW cancer and I had adjunct chemotherapy again without radiation because there was no evidence that cancer was in the lymph nodes or elsewhere. Both were considered two separate cancers and both were staged at IIB. If the cancer in 2012 had been from the original one, it would have been Stage IV because it would have been a metastasis from the original tumor. I think that is what they are waiting for. If the cancer in the other side is a different cancer from the first side, it would not be considered a metastasis, and be staged at a lower stage. Whether it's a lobectomy or a resection, I think (just my opinion) the recuperation is about the same. Each of us is different, so it's hard to say if your recovery would be different, better or not! As for chemotherapy, I'm with Bruce! I'm glad I had it, though it was not pleasant. Knowing that they did all they could to erase the cancer was good for me. They will not do radiation unless they find evidence of cancer outside of the lobes, either in the lymph nodes or in another part of your body. As for pain? Again, everyone is different. I had my 2nd lobectomy in January of this year, and I am still taking morphine for it. I don't take a lot, and I'm not drugged or groggy, but the nerve damage from where and how they took the lobes out have caused me to need the pain medication. So that depends on how easily they can get at the lobe to remove it. Chemotherapy does cause pain for some people (me) so don't be discouraged if you continue on it. Your body will tell you when you don't need it (pain meds) anymore. I hope this helps! Judy in MI
  3. Still here and I'm glad you are! Judy in MI
  4. Joppette

    Two years on

    Hello Ronnie, Can it be possible that it's been two years? Time flies doesn't it. I'm so glad that you found this place and us. It's nice when you stop in to say HI again. Take care! Judy in MI
  5. Hi Sue, This is a thoughtful and provoking string of posts. Thank you. I think you are right though, in that, whether you are stage IV lung cancer or not, we only have this day to live. If we really think on that we realize that in this day, today, whatever we do with it has little to do with anything other than what we decide to do with it today! LOL. Is that making sense? I too have morphine brain. I've been obsessing this week about how tired I am and how sad I am at how much life I am missing. Today I got up at 7:00AM after a good night's rest and by 9:00 was ready to go back to bed. I sat on the couch in tears, having a big old pity party, trying to decide whether to go back to bed or tough it out. I decided I didn't have to do either. I moved my computer to a place where I can stand to work on it so I am not so inclined to fall asleep, and I'm just going to make the most out of whatever it is that is in front of me. If it is sleep again, so be it. But I realize I am missing out on so much because I am so upset about missing out on it!!!! Does that make sense? Anyway, I love your writing, and it helps me a lot to read as you process your life situations. Thank you for that. You are a blessing to me. I think that any of us that live with cancer feel rushed at times to get as much done as we can to the point (at least for me) that the quality of what I'm getting done is just not there. That has made me slow down today and just appreciate the moments. (But the roller coaster does not stop running. In ten minutes these feelings may change, so I wrote them down here so I can go back and remember them.) Take care. Judy in MI
  6. Well, my Labradoodle almost bit a child again. We were able to stop her, but this is the third time. We obviously didn't know this when we got her. She has been an awesome pet for two years. But now? I talked to my vet about therapy, and other options, but his experience tells him to tell us that we should put her down. He said we can try to find a home, but obviously we have to disclose the problem we have with her. The woman that grooms her has always said she'd take her in a heart beat. I have told her about the problem with the children, and she didn't seem to care. So I'll call her tomorrow. The Vet says that most dogs are not traumatized before doing this. Some are wired this way and some are not. She has always been really sensitive. I can't have a dog I can't trust. There is no way I can risk my 60 pound dog biting another child. Three chances is enough. I am heart broken. Devastated. WE'll see tomorrow. Maybe the groomer will still want her. THat is all I can hope for. Judy in MI
  7. Joppette


    Thanks for the update Izzy. I don't know the answers either, but would suggest, as Randy did to take your questions to Cancer Grace. You can create an account there like you did here. In fact use the same "handle" you use here so us regulars there will recognize you! The site is very user friendly. Just post your questions, and ask for a Doctor's perspective and they will answer. It is http://www.cancergrace.org I think Randy put that in here earlier too. Wishing you the best. Do keep us updated at least so we can pray! Judy in MI
  8. Hi Donna, That sounds like a good plan. You understand, as do we, that just having a plan eases that anxiety a bit. I'm praying they caught it early and that 'it' may not be IT! Judy in MI
  9. Oh my goodness Dani, What a turn of events. Once you have dealt with the stroke and it's causes, please do insist on an Oncologist. Surgeons like to think they got it all. It's likely they did. But they are not cancer doctors. Unless you have complications from surgery, you don't need to go back to see him. Your Oncologist should take over your care. Same with your pain. I actually have a doctor that is assigned to me strictly to manage my pain. He is part of a palliative care doctor team but I am not terminally ill or dying which is what palliative suggests. But he said that he job is to make sure that I live with good quality and it has nothing to do with terminally ill or not. Pain control is the most important factor in my healing. My rib cage still feels like it was opened with a can opener. The cut nerves, the muscles, all of it is so intrusive to our bodies. Pain care can make an immense difference in how well we heal. Do not be afraid of taking narcotic pain medications. If you body is hurting, it needs it. When your body no longer needs it, it will become apparent to you and you'll be able to get off the meds. However, mypain situation is extreme. But my pain doc said that in order to heal I need to take these opiate meds. He said he doubted I'd become addicted, but that if I did, it would not be a serious addiction. He can tell by how many pills I am taking by how many refills I am asking for. But he is also an expert, so should I need to deal with that, they can help wean me off the so that it's not this horrible thing like what you see in the movies. I ampraying for you Dani. Judy in Michigan
  10. Congrats Eric! You should be very proud! MI Judy
  11. Joppette


    Mike, I don't know the answer about the CPAP and oxygen being the same thing. My husband wears the CPAP and he loves it because he sleeps so much better. But he was diagnosed with sleep apnea where he stopped breathing through the night, so much so that he'd wake up suddenly without even knowing it. So his sleep was constantly interrupted so he never got good rest. The CPAP helped him with that. The tests will help determine that for you. What you are saying about falling asleep like that and the confusion, yeah I had that too. I live in a little town too. I worried about what they would think too, but they have treated me so kindly that it just touches my heart. I have not felt 'judged' at all. I think it was my guilty conscience that was getting to me. Sometimes I have to fight the feeling that I deserved this because I once smoked. Like this site has taught me, no one deserves cancer. It has helped me understand that the "no one" includes me! I have to remember that not all smokers or ex-smokers get lung cancer. And a lot of people who never smoked get lung cancer. It does not discriminate. The important thing is that research is done to find a cure.
  12. Joppette


    Hi Mike, I was not on O2 at all until the second dx. After they removed my rt. upper lobe, (with left being removed five years before) they said I only needed O2 during the day when I was active. I think I posted here about my thoughts on that. Being female, and vain (hate admitting that) I just did not want to do this. People told me that SOB would feel like breathing in through a straw. It kind of did. Not quite that bad for me, but I just was not getting air in like I used to. I noticed that I got tired much easier than I did before and the doc explained that my body was working harder to get the O2 to the organs which was making me more tired. I also noticed that when my air was low, my heart would kind of skip beats. My pulmonologist didn't know that I was only on Air during the day. He asked why I didn't wear it at night and I said "no one told me to." LOL. I do follow directions well. Logically I thought I would not need it at night because my body was at rest, and not needing as much. He explained that when we sleep our respiration and blood pressure go down as our bodies relax. He said that I actually needed the oxygen more when I slept than when I was awake because of this. So to make a long story longer (sorry), I did wear it at night and was surprised by how much better I felt when I woke up! I slept better, and woke up refreshed, I guess because my body was not laboring for the air that my organs needed. On the sinus issue? I have allegies and was surprised that the oxygen actually helped with that. On the idea of being hooked to a machine? I hated the idea Mike. But, like anything in life, I got used to it quickly! It surprised me. I can remember in the past that when I saw people in public on oxygen how bad I felt for them. I thought that must be the worst to have to carry an oxygen tank around with you. But there again, I was surprised by how quickly I got used to it. Now I forget I even have it on. It was a major hassle trying to get used to it, trying to plan my outings with oxygen tanks and how much to take, etc. But I figured it out with the help of my oxygen supplier. And now? It is okay. Oh...except for one thing. I love to shop for shoes, don't you? *wink* I do! It is a hassle with the oxygen tank bending down and putting shoes on and getting up and walking around, etc. You know.... Anyway, that is one thing that I do on-line now. I get them at home, and try them on and ship them back if they don't fit! I get my ladies shoe shopping fix, but without the hassle! Judy in MI
  13. I can only say how I found this site and what it meant to me. I was a two year survivor, having surgery and chemo treatments. When I found this site I was so excited because I thought it was a lung cancer support community! The first forum I looked for was the one that was most active, which of course was the Daily Air. I didn't know the history of the Lungevity site, or of any of the different forums. I remember posting my first post in Introduce Yourself, and then made myself at home where everyone seemed to be hanging out - in the JFF Daily Air. I did figure out that you could post things like test results and the like in the other forums, but still a lot of people were using the Air as the 'how ya' doin' place to be, so that is where I stayed. I didn't even know what the Daily Air stood for. I just knew that a lot of people posted there and I wanted to get to know a lot of people. Which I did. Then when the site got quieter and quieter, I felt sad. Judy in KW was still posting on an almost daily basis, and she was writing about her cancer stuff, and there were days when we joked that we could use this place as our daily texts to each other because it had got so quiet. She did PM me and told me that sometimes it got really quiet, and other times not and to not get frustrated or sad when that happened, so I tried to just go with that. Like I said, I didn't know anything about this place other than that when I did a Google search for lung cancer support forums, this is the one that came up. Back then I couldn't wait to get to know the stories of the other folks both from a lung cancer perspective but also as a care giver since I was both. And I thought that this would be a place where I could 'give back' to the new ones that would come on feeling as alone and scared as I was and needing a friend. Then my cancer came back. The Daily Air had already changed and hardly anyone was posting in there anymore. I did still try to use this to get daily support as I went through my stuff, but a lot of the ones that used to be there weren't anymore. There were still some that came on and would encourage me, and I am so thankful for that. But it was not what I thought it was obviously. After reding what Katie has posted, I can see that I obviously didn't understand what this place was for. It actually embarrasses me now because I shared a lot here that I'm sure now in retrospect I would not have. It also embarrasses me that others that had been around here for years never took me aside and told me that I was way off in what I thought this place was. If someone had told me that I was intruding and trying to turn this into something it wasn't, trust me I would have tucked my tail and run. And so after Judy died, I tried to think of how we could get some spark back here. I thought if we did Daily fun stuff like theme days that I introduced last week that this would bring some fun back and get more activity. And then I thought I'd also have another daily post where people again could write about their journey as it is happening right now. Clearly I had no idea what I was doing. It's no wonder I wasn't hearing from the folks that I got to know in my first year or two here. I didn't understand and no one thought to help me understand. I do now. I won't bother anyone again with my cancer support stuff, or my daily stupid silly stuff. I see now how fun stuff should be handled. "Today we still have our Live Chat (randy, people still use it) and facebook and twitter for the "fun" connections...we also have the good old telephone." Or. "Obviously if people want just for fun postings and fun chats, please schedule regular chats again the chat room...everyone wanted chat but no one wanted to volunteer to host it and remind people about it, and it just became easier to use Facebook." Clearly I didn't understand. And being one of the newbies to the site, I didn't know people's real names to be able look them up on Facebook.
  14. I posted here, but nevermind. I didn't understand.
  15. Diane, I agree with you on two things at least. #1 - Red Robin fries are the best! LOL. The other is the point you made about this. "Some of my "closest friends" I didn't hear from until treatment was all over. I think partly because they know me, and partly because some people just don't know what to do or say. " I agree. The kindest and deepest care came from people that I would call very friendly acquaintances. It surprised me. They gave much more than even my family did in terms of kindness and care! In fact there are two women that I thought I was quite close to that have not called me in three months. I think they don't know what to say or do, but still it hurts. But I understand. It amazes me what this disease does to relationships. MI Judy
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