beckyg

Boy, we are a stressed out bunch. Somehow scans don't seem to worry me. Maybe that's because I know my tumor is there--scans are always about whther it is shrinking, growing, or stable rather than about whether the beast has decided to rear its ugly head again. I do freak out about stuff that never used to bother me--I get really bad headaches from time to time, and the prednisone make me see "floaters" when I get tired and I of course always start thinknig about brain mets. I really freak out whenver Katie or Curtis gets a cough--I think I always will be paranoid about thir lungs--Curtis and I have lived in the same environment for 10 years now--if it was pollution or radon that did this to me, there's a pretty good chance he was breathing the same stuff. But we're allowed to be paranoid--we just all have to figure out our own ways of not letting the paranoia run our lives. I have certain times of the day when I deal with "cancer stuff" and the rest of the day I just don't think about it. I resisted for a long time getting the handicapped parking pass, and I hate my oxygen tank even though I need it--both for the same reason. Putting that parking pass on my rearview mirror and dragging my tank around behind me both force me to think about cancer all the time, and I resent that. Hang in there, Heather. We love you!

Last week my oncologist said that the current chemo regimen, if it is doing anything, is not doing much, so he suggests we change. I am okay with that. I talked to him about what he would recommend--he says he would go wqith Gemzar this time, and then I showed him some information about the GVAX trials. The Cancer Center in Tyler is one of the sites listed (and they are only 80 miles from here!) He was excited about it. He said that from the information I gave him, I look like a good candidate, but of course it isn't his study, so he can't say for sure. Anyway, he called the research nurse listed and left her a detailed message about me last Thursday. Monday I called him to see if he had heard back yet; he hadn't so he called again. The response was that since the first round of results hit the news recently, I am "not the only one" trying to get into their trials. He said the nurse's primary concern was whether my tumor was in a place where they would be able to easily get a good sample. My oncologist thinks that will be very easy either by bronchoscopy or through my side because it is in the pleura of my right lung. So it all sounds good, and I am excited about this trial, but I so hate waiting! (As if any of us like it, I know.) Hopefully with the new information they'll be able to decide pretty soon whether they want me to come for an evaluation at least. I have high hopes for this thing, but I hate being totally off treatment for very long--chemo has not been particularly hard on me, so I am not in a real need of a break, and I get nervous about it when I am not actively trying to poison the bad guys in there. We have a new round of pregnancies in my family. It's funny--people in my life this last year have been hesitant to tell me good news (especially things like mole biopsies coming back benign--as if I would wish cancer on anyone.) I am good at celebrating people's good news, and crying with thme on the bad news. But I have a hard time with all these babies--I want one so badly. I don't turn into the green-eyed monster over them in front of anyone, but man, am I jealous. I am back up on the steroids for breathing again, but so far I have managed to restrict my outbursts to people moaning about "bad hair days" and "not being able to breathe" because of their allergies. Anyway, enough rambling. I have a stack of work on my desk that isn't shrinking--in fact, everything seems to be taking twice as long to do as I expect it to take. Good day to everyone. Becky

I see that, but YOU posted it as part of your argument. I wasn't trying to attack you and I didn't really feel personally attacked on this one; I am a bit sensitive on this issue in this political season. Life is short and precious. I think religion helps us make sense of the world and gives us comfort in times of trouble and has many valuable aspects to it. I think it is a real negative of religion these days that so much energy is devoted to telling other people that they are wrong. Becky

Joe, I don't know how to begin to respond. I always find it strange for people to try to convince others that the Bible is is true by quoting the Bible. My faith is a bit confused and complicated and I wish I really knew what will happen to me when this body no longer works. But I will say this: The Theory of Evolution is a bit more complicated than saying that a frog can turn into a prince--which is apparently not impossible since with God all things are possible. I happen to find the Theory of Evolution (more than what little is to be found in high school biology textbooks) to be compelling and very interesting. The low probabilities you mention are not overwhelming to me when you consider how huge the universe is. I guess my point is this--call it a religion if you like; disagree if you like; but if you are going to call it a "ludicrous absurdity" you don't get to be offended when people criticize your religious beliefs. Becky

Elaine, I think this is all part of the attitude that we are all working to change from different angles. I spend a lot of time talking about the fact that I am in these shoes and didn't ever smoke--not because I think I am somehow better than those who got here because of smoking, but because I want people to know that smoking isn't the only way to get on this roller coaster. I might be in a very different health position today if I had pushed harder when I first started thinking that something wasn't quite right in my lungs. But I let doctors convince me that I didn't fit the profile for lung cancer or really any serious lung problems. That said, I think that most people who comment about smoking and lung cancer are doing it out of ignorance and that very human desire to convince themselves that they are "safe". (If I didn't smoke, I don't have to worry about that. Whew! What a relief.) Feel free to rant about it, but then let's keep gently correcting that misconception. Personally, I have always been anti-smoking. Not so much because of the health concerns--I just think it is a nasty, stinky habit. I think that one good thing that the last year has done for my personality is change that attitude from "Anti-smoker" to "Anti-SMOKING". I have much more awareness of the difference between the person and the habit. Becky

I told you guys several weeks ago that I had been interviewed for the University newspaper. The story finally came out yesterday, and hopefully I have set up the link correctly so you can read it. http://www.thepinelog.com/vnews/display.v/ART/2004/02/29/40428ed42fcdb

Ok, that's odd. How do you find these things?

I don't know what's up, but I had a ton of doctors when this started scratching theirb heads and telling me they never even heard of someone my age getting lung cancer without a long smoking history. It seems clearer and clearer to me that they just weren't paying attention if they truly never heard of such a thing. (I did the early stuff in Houston, where one of the WNBA players died of lung cancer at age 32 a few years ago--no smoking history for her either.) Becky

Heather, I would love to have your body at the moment, but not because of its size--because of those NED initials it has that I want so much. Don't let people get you down. Feel free to put them in their place from time to time--I think we should forgive them their insensitivity as Don points out, btu it's also okay and even good to point out to them how insensitive they are. Becky

Mo, I don't remember what kind of chemo you are on this time, but two of the three chemo protocols I have been on have given horrible gas a couple of days after treatment. (Embarassing at any time, but particularly so for me Monday mornings when I am standing in front of a class of college kids who don't want to be there.) But then, it could certainly be a result of eating like a horse--that gives me gas too! Glad you are feeling well enoguh to be out at the zoo. Becky

Buttercup Bubblehiney, that's me.

I got a 78% Dixie score. Not too surprising--I have lived in Texas all my life except the years I was in North Florida (more like Georgia than like South Florida). Becky

I have gotten sort of the same response from doctors about RFA to the lungs. I haven't pursaued it as thoroughly yet as you have--the RFA doctor here lost my scans before he had a chance to look at them, so he hasn't even determined if I am a candidate. But I have had oncologists tell me it's not a good idea because it is only for tumors that can be seen, while chemo is systemic. But the RFA surgeon I have been talking to sees chemo and RFA as working together--each supplementing the other. And so far, chemo hasn't done much for me--I don't know why I wouldn't want to consider everything that could help at this point. It is very frustrating! I hope your search for answers improves. Becky

I for one would hug Dave G AND his dog, and I don't even really like dogs. (I am firmly in the cat camp. Give me a rough scratchy tongue licking my hand over a wet smelly one any day.) I have refrained from adding to the insanity between the Davids, but I haven't missed out on laughing at it. Keep it up. Becky

I had bronchitis or pneumonia at least twice a year for YEARS before I was diagnosed. I have learned in the last eyar that that is one of the few "early warning signs of lung cancer." No one ever took an x-ray or considered anything beyond antibiotics because I ddin't smoke and was took young to have serious lung problems. I was told that I have allergies like almost everyone who lives in the places I have lived. Now I know I was stupid to let it go--I knew that most people with allergies don't cough like I did, but I wanted them to be right, so I didn't argue much. Thank God I finally had a doctor last year who thought that a cough that lingers for 3 months just might be more serious than cedar fever.

I am just picking up on this string after being away from the computer over the weekend. I asked basically the same question of the lung cancer specialist whose name I can't remember who did a PWLC chat back in November. I didn't restrict it to women--just asked him to address the failure of the medical community to consider lung cancer as a possibility in never smokers so that maybe some of us would be diagnosed earlier. As I remember, he (or the moderator) didn't think my question was worth addressing. It really burns me up these days every time I hear an oncologist from MD Anderson open his mouth publicly about lung cancer something stupid comes out. The doctor I saw there repsonded to my anger with him about not being prepared to talk to me about clinical trials when I only made the trip to Houston for that purpose by telling me that "Only God knows how much time any of us have to live." (Yeah, but I don't believe God wants me to spend that time sitting around waiting on doctors whop can't be bothered to do their job!) Anyway, I just put writing a letter to Dr. What's-his-face on my list of things to do this week. Actually, this is good for me--I have been feeling kind of down the last few days, and now I am energized and angry.

The gold standard is definitely surgery to remove the lobe ... survival rates just about triple I think when surgery is an option. Your mother is not a statistic, and the world will not end if surgery is not the correct way to go, but it sounds very positive that this has been caught before any mets. The chemo question after surgery is more ticklish. It depends on many things. Iressa is a very good drug, but it is more often a stabilizer. My wife had used it for six months and showed no change before scans detected spread in December. I would think Iressa would be something used only if cancer reappears after surgery and chemo/radiation doesn't work. I don't think that Iressa cures cancer terribly often, but if it can shrink the tumor or at least stop its growth, there is a victory there if only to rest up for another battle. A PET scan is another way of testing for tumors. The upshot is that cancer cells use more energy than do normal cells. Becky has had a handful of these. They injected her with radioactive sugar, and then can scan to see where the sugar is consumed in the body. If an area consumes more than an ordinary amount, then that is an indication of malignancy. The test is not painful; uncomfortable since you have to sit very still for a long time and try not to think of anything. Becky was not allowed to read, which for her is about like being asked not to breathe. But it is not too bad. Good luck as you go forward. Please feel free to ask any questions and here's hoping surgery is called for and ends the whole process successfully. Curtis

Yesterday I saw the radiation oncologist (who ordered the PET scan.) Monday I got the report on the PET from my medical oncologist because he had it and i was tired of waiting for the other guy to get back to me. Anyway, the radiation guy told me the same things the medical onc told me, but he also had a CD with all the pictures on it from thr PET, so he spent 15 minutes or so showing the scans to me and answering questions. It appears on the PET that my right lung is totally blocked--no air whatsoever getting in. He said he would guess that the tumor and fluid in the top have closed off the bronchus on that side and caused the lower half of my lung to collapse. This would explain why my breathing has gotten so bad in the last 6 weeks, and he said it might even explain some of the pain--a partially collapsed lung can be painful. Of course, he didn't have any suggestions about what I can do about this problem. (They all seem to think that if I am able to get out of bed by myself and go to work and do the things I am doing, I am doing way better than they expect, so what am I doing complaining that I am not doing as well as I want to be doing.) So I guess my next step is to go back to the pulmonologist--he's the only one who wants to talk about actually improving my breathing. I still want to get to the RFA doctor in San Antonio for his opinion. Most of my other doctors have kind of pooh-poohed that idea. They say my tumor is too big, that I should let the chemo do its thing, etc. But I understand that RFA is supposed to be complementary with chemo and I am not wanting to quit chemo to put all my eggs in the RFA basket. And even if the tumor is too big for him to completely get rid of it, maybe he could blast enough of it away that I might be able to use my right lung again? The MD Anderson oncologist and my pulmonologist both told me in January, after looking at my December CT, that I had scarring in the bottom of my right lung, but not a lot, and they were baffled by why I was having so much trouble breathing. It didn't dawn on me at the time to question that, but my tumor is in the top of my right lung--why would there be scarring in the bottom--scarring should have come from the radiation, right? SO I asked the radiation oncologist yesterday and he just said, "I don't know what they mean by scarring." Grrr. I am so frustrated. It seems like the more questions I ask, the less I think I know about what is happening to me. I am just trying to hold on to those nodules in my left lung not lighting up on the PET. That has to be good news and then we'll keep plugging on the rest of this mess. Sorry for the novel. I am headed home early today for some rest. I have a friend here to pamper me this week and I haven't had much time to visit with her because of school. Becky

We missed out on the snow that hit Dallas over the weekend. Well, not entirely true--snow fell here, but melted before it hit the ground because it was exactly 32 degrees out during that part of the storm Saturday morning. We live in a place where snow happens once every few years, and every such occasion gets talked about for YEARS afterward. Right now out my office window the sun is shining, the temperature is in the low 50's and it is BEAUTIFUL. My daughter asks every day when it is going to snow again so she can throw snowballs at grandpa. (She saw snow when we went to Kansas in December. She might not see it again until the next time she goes to Kansas in winter.) By the way, what did the groundhog have to say this year? I had an officemate in grad school who always kept me posted about that important detail, but she left me out of the loop this year. Becky

Connie, I have already had a bone scan, a CT, and a rib x-ray, and nothing conclusive shows up on any of them. That's why the radiation doctor ordered the PET--he thought maybe it would show up there. So now the doctors are still scratching their heads about why I have this pain. At least the medication keeps it to a dull ache most of the time, but I would love to get rid of the side effects of the drugs! Becky

The PET results finally came in. I still don't know what is causing the pain in my ribs. He said that there is uptake in my right lung where the primary tumor is and there is uptake in the area that hurts, but it is not clear whether it is the ribs or the pleura that is lighting up. He said the pain could be caused by the tumor pressing on nerves. I am nervous enough about radiation causing me even more trouble that I declined to have radiation done anywhere near my lung unless they feel some confidence it will help. So for now I am still just sticking with drugs. The other news from the PET is also a little mysterious, but seems good. The two nodules from my left lung that showed up on my last CT did not light up. The onc. says that could be because they are benign; they could be particularly slow-growing; or it could be that this chemo regimen is working and has already resolved them. I like choice c best. I am scheduled for another x-ray in a couple of weeks--we'll see what it shows about them, but I am feeling optimistic. I had my second dose of chemo on Thrusday, and I slept most of the weekend, but so far I have managed to make it to work every day and to get all my important things done. (Slower than I used to do them, but I am still effective.) That is really important to my mental well-being--that I feel every day like I got something important (at least important to me) accomplished.l Becky

Joyce, No one gave me a time line--I never wanted one. I told doctors that I knew the statistics were grim, but I wanted to go at this in search of a cure, not just a little more time. As you can see from my signature, I am in shoes much like yours--no smoking in my life, and this diagnosis came out of the blue. This subgroup of young nonsmoking women with andvanced lung cancer seems to be growing. I don't know if being a lifetime nonsmoker has much impact on how well people respond to treatment--I have yet to hear "shrinkage" from anybody, and I have been at this for a year, but I am still at this after a year, and I am still working every day. Congratulations on your good results, and stick with us--you won't find a better place to be to talk about lung cancer. Becky

My surgery anniversary is February 14. Curtis tells me that I am not getting anything for Valentine's Day--it was one of the worst days of his life and he doesn't want to acknowledge it. I still have never gotten a straight answer about why I woke up from that surgery with all the lobes of my lung still inside my chest. (The plan was not to do a lobectomy if there was cancer in my lymph nodes, because it was better to start chemo right away and then do surgery later. But once they had to crack my sternum to deal with a hemorrhage, that argument went away--I got the recovery time before chemo anyway!) Chemo tomorrow. Next month I can celebrate the first anniversary of my first chemo treatment. Today I am celebrating that I am giving exams today, so I can sit in class and stare into space because I am SO SLEEPY! Take care, everyone, Becky

I am doing well--just busy at work. It is time for the first round of exams for my students, and between helping them with their questions and trying to write the exams, I don't know which end is up most of the time. I went for a PET scan on Friday, and am waiting to hear the results, hopefully in the next couple of days. They are still trying to figure out why my ribs are hurting so much, and nothing has shown up on x-rays or CT's. The good news about that though is that the radiation doctor started me on Celebrex, and that has worked so well that I have really been able to cut down on the narcotics. Thursday I have my second dose of this latest chemo. I am not sure when I'll get scanned again, but my oncologist here has so far always scanned after the second dose of everything. My daughter has had lost of questions lately about dying, brought on by "The Lion King". She asked me when I am going to die. I told her that I don't know, but I hope it is a long time. I told her that everybody dies, and someday she will die. She now tells me every day that she doesn't want me to die and that she hopes it is a "real long time" until I die. Thanks for checking on me. Becky

Belladonna, I also had oncologists tell me that they had never even HEARD of someone my age having lung cancer with no smoking history. They were sure that the lung tumor could not be the primary tumor, and ran every test they could think of to try to find the "real tumor". I know now that they hadn't heard of anyone like me because they hadn't been listening. We are a growing group--young, non-smoking otherwise healthy women with this surprise diagnosis. Sorry you have to be here, but glad you found us. Becky