beckyg

I am already on Prednisone--I am not sure if it is "high dose", but my medical oncologist wrote me a presription for it on Monday when he couldn't find anything wrong. He also gave me a prescription for Albuterol (inhaler) and said that between the two of them, my air passages should open up and I should start breathing easier in a couple of weeks. I haven't been able to tell that the Albuterol is doing anything, but I have been faithfully puffing 4 times a day as directed. You guyys have made me feel so much better--that there will be relief somewhere in the future. My condenser at home has an extension on it long enough that I can get to my bathroom, but my house is set up in such a way that you have to travel down a very long hallway to get from the master bedroom to the living areas. So Curtis drags the condenser into the living room and plugs it in and I use the cart until the condenser is ready. The part that makes this hard to cope with is not dragging my oxygen around, but that is doesn't make me able to do anything more, at least yet. I still am gasping like I ran a race by the time I walk down the hall at work to the restroom. I recover faster now that I have oxygen, but I was hoping for more. I know, I need to have patience, but that isn't easy for me. Somebody mentioned humidifiers. The guy who delivered didn't mention anything about a humdifier, but i can tell you that on both modes of delivery, as soon as I put the cannula in my nose, my nose starts running. So I don't think I am getting too dry in there! I will check with the doctor this afternoon about the dosage on that prednisone and about the smaller tanks. My pulmonologist is in Houston --3 hours away, so if I can get the appropriate treatment (armed with all this information) out of the oncologists here, I will spare myself that trip. But we'll see. I'll continue to keep you posted. Becky

My blood oxygen level while I am not on oxygen is a 93. I will check on the smaller tank. The radiation oncologist won't see me until Tuesday, but I have been seen by the medical oncologist who ruled out fluid in my lungs and pulmonary embolism. Thank you all for your posts--you guys are so helpful. Becky

My shortness of breath is not getting better. I have oxygen at home and a portable oxygen tank to drag around with me on campus. It helps me recover a little faster from doing strenuous things like walking down the hall to the bathroom, but I am still getting out of breath from basically everything. Every time I have felt bad before in this treatment process I have know that it was temporary, that it so many days or weeks it would get better, and if not, what to do about it. But this time no one seems to know why I can't breathe. Maybe it's radiation pneumonitis. Maybe it has progressed to pulmonary fibrosis. Maybe it is a reactin ot the Taxotere and as my body heals from that last dose, I will start to be able to breathe again. There is just something really disheartening about dragging an oxygen tank around. Ten days ago I went to the zoo with my daughter for a couple of hours. I was tired at the end, but I wasn't gasping for breath. Now I am gasping even with oxygen just walking around my house. Curtis is working on getting me in to see the radiation oncologist today or tomorrow. They did tell me that radiation pneumonitis could set in anywhere from 1 to 6 months after treatment ended, and my treatment ended May 5. But they didn't tell me that if it happened it could be like this. They said it would be like bronchitis, which I have had many times and that never felt this scary. I have never had any doubts that I was going to win this battle with cancer until every breath became a battle Saturday morning. Work is still being incredible. I can sit in one place and work just fine, so I plan the lessons and homework and grade and write tests and other people stand up in front and talk for me. Those of you with radiation pneumonitis--was it like this for you? Please tell me it gets better. Becky

Well, I went to the oncologist this morning and he sent me over to the hospital for tests. I do not have enough fluid in my lung for that to be causing the problem. I do not have a blood clot. So he sent me home with Albuterol and prednisone and an order for at home oxygen for me to use at night. He said it might take a few days but I should start breathing better--it is probably a reaction to the Taxotere. The other news is that in checking for a blood clot, they did a chest CT. Once again, no change in my lung tumor. SO tomorrow I start Iressa. Tonight I am very disappointed--I had convinced myself that the Taxotere was going to do it for me. I will be at 6 months from diagnosis on Thursday. I have been through surgery, radation, and chemo, feel worse than I did when I started, and my tumor is as big as ever. My natural state of being is hopeful, so tomorrow or the next day I'll start to bounce back, but tonight is hard. Becky

I have said recently that my only real complaint about all my cancer treatments is my shortness of breath. Up until Friday afternoon, it was an annoying problem, but I was able to do what I needed to do. Starting yesterday, it has become crippling--going to the bathroom requires catching my breath while in there and again when I return to wherever. Rolling over in bed last night woke me up every time because I was breathing so hard. I have some sort of infection going on (I am on antibiotics) and I am hoping the infection is stealing my breath and afraid ithe shortness of breath means I have fluid buildup in my lungs which would seem to mean that the Taxotere isn't working. I am just taking it easy today and we'll get after doctors in the morning to try and get some relief. Could it be a side effect of the chemo? It seems it has been slowly getting worse since my last dose of chemo, with the dramati change yesterday morning? Becky

I have been counting my blessings this week. (Other weeks I count all the things that are definitely not blessings!) It occurred to me how lucky I am that with all I have been through the strongest pain medication I have needed except post surgery is Aleve. I don't even need that every day. My hair has held on for Taxotere--somehow it seemed worse to me imagining it falling out again after I had gotten some fuzz up there than it was when it fell out in April. Last night I was able to sleep on my right side--for the first time since surgery in February. (This was hard for me--the right side has always been my favored sleeping position.) My left side recovered much faster, and I was sleeping on it by mid-March. Taxotere continues to be not a problem--I have been running a low grade fever this week, but CBC and urinalysis showed nothing to worry about, so I am still home and at work doing my thing and drinking enough water to float away. My main complaint is still the shortness of breath--thanks to the radiation. Yesterday my boss came in to talk about my future. He said he wanted me to know that he is counting on me being here in 5 years when tenure review becomes an issue for me, and he wanted to talk about my progress in that regard. This could have been a stressful conversation, but he wanted to tell me that he thinks it may not be fair to me to have me on the same 6 year tenure schedule everyone else is--for the obvious reason that most people aren't fighting for their lives while trying to get teaching, research, and service done. I got emotional, and he thought he had hurt my feelings, but I was touched that he was thinking so far ahead for me, especially when I have so little time under my belt as a productive member of this department. Next CT scan in 10 days--HOPEfully some clear good news this time to go with my current feelings of well-being.

I have thought about a port, but so far my doctor reccommends I don't have one. He thikns yesterday was just a fluke--all the Cisplatin was in my right arm, and no one has ever had trouble getting a vein away from those dead ones before, and the Taxotere doesn't kill the veins like the platinum did. I trust this doc, so I will go with his reccommendations for now. Becky

Carleen, I am so sorry for this new stress. I did the same chemo as Keith along with radiation back in the spring. I don't know how much worse the radiation made it than the chemo alone would have since I never did chemo alone, but I was pretty worn out for most of that time. (I was also recovering from major surgery during that time.) I didn't take anything for the throat pain until the throat pain became a problem, around the end of the 4th week. Even then, my throat pain wasn't too bad as long as I didn't eat stupid things (Fajitas were a BAD idea, even though they tasted really good.) My radiation oncologist told my husband and me on the first visit that I would probably have a lot of fatigue and that my job was to sit on the couch and relax and his job was to bring me whatever food and drinks I wanted. Good luck to you both and hang in there! Becky

Thanks, Cindy. The picture is little bit old she was almost 2 then and now she is very proud to be 3 years old. In fact, yesterday she announced (at least a dozen times) "On my next birthday, I will be four!" I am working on getting one with my new hairstyle and an updated shot of my little cutie. Becky

I had my second dose of Taxotere today. This was the first time anyone has had trouble getting an IV started--I don't know why she had so much trouble. The veins that are dead from the Cisplatin are in my right arm and are discolored and hard. The nurse stabbed me three times and then called the doctor to do it. So my poor arms are looking a little beaten up. Oh well--it's a small price to pay, and the bruises will be gone in a couple of days. I have my CT scan scheduled for July 28. My husband's birthday is on the 27th, and he says all he wants is good news on that CT. I told him that is my plan. I also told him that I am not going to get a year older on my next birthday--not that I am concerned about aging--I just have decided to have a "do-over" on being 30. The antihistamine is making me sleepy, and I still have work that needs to be done today before I nap. Take care, everyone. Becky

David, I want to by just like you when I grow up. My bike rides are still not much over a mile at a time (too short of breath and too hot in Texas in the summer) but I am working to get my breath back after radiation stole it and I am planning to be riding 26 years from now. Becky

That money also went to make a handful of lawyers very very rich men.

Thanks everyone for the nice replies. My big wish right now (besides that the taxotere is really destroying my tumors) is that I could convince my family that not everything in my life is about cancer. Sometimes I am mad about things I was mad about before this happened. I don't get mad at my husband for leaving dishes all over the house because I am shorter of breath than I used to be--I get mad because I am not the maid and he knows that dishes on the living room floor aggravate me. But if I ever express frustration about anything, I get patted and hugged and told that the chemo is working and it will all be better soon. Grrr. As for my class--I am not teaching children. I teach college kids in general, but this group is composed of middle school teachers who are in a program we have here to get them certified in math (many of the students will be older than me!). The course is being developed and taught at roughly the same time, so I am swamped with work, but I am enjoying it. It's good to have something new to think about. Becky

I haven't posted for a while--I have been kind of grumpy, but I have been reading. The good news is that the taxotere is SOOOOO much easier to deal with than the Cisplatin. I have been more active and felt better in the last couple of weeks since I started it than I have since I went under the knife in February. I am hoping for better news in a few weeks when I have another CT scan. More good news is that I am going to teach a class in less than two weeks--after being off from teaching since Valentine's Day. (I could have come back in mid May if the semester hadn't ended about then.) It is going to be so good for me psychologically (and, of course, financially) to get back in class. My daughter and my students keep me sane in normal life, and I have really missed the students in these last six not normal months. I just met another devastated 25 year old with stage IV lung cancer on another board. She hasn't responded to me yet, but I hope she'll come here and meet some of you. The more people close to my age I find with lung cancer--well, in some ways it's comforting to find people who are in shoes more like mine, but it scares me. I know that tobacco is almost certainly not the cause of my cancer, but I don't know what is. I suspect it has something to do with pollution of some kind or another. I like to blame it on the gas guzzling tanks known as SUV's that everyone in Texas seems to drive. It's arbitrary, I know, but I hate the darn things anyway, so why not blame cancer on them? A friend this week driving a nice fuel efficient car totaled her car in a 15 mph accident when she rear ended an SUV whose bumper was WAY above her bumper height. I could rant for days about pollution, fuel economy, US policy, and related issues, but that's not getting my class planned or solving anything.

Does anyone know where I can get information about how chemo will affect my fertility? My oncologist in Houston looks at me like I have two heads for even suggesting such a concern--he's the one that thinks that if I am still even alive in five years, that will be a "very positive result". My oncologist here in town is more sympathetic, but he doesn't know very much--I don't think any of his other patients are remotely concerned about having more children.

Hi, it seems that the number of us with lung cancer in our thirties is growing. I am 30 and was diagnosed in January afetr talking to my doctor about a lingering cough. I figured he would send me to an allergist or put me on a new kind of medication--I never thought of lung cancer. Like your husband, I never smoked or did anything that was supposed to put me at risk for lung cancer. My husband and I have one daughter who will be three years old next week--some days she is the reason I get up and stay focused on what needs to be done to beat this. Today I start my second course of chemo. I finished the first course along with radiation in the spring. Ignore doctors who try to tell your husband how much time he has left--no one knows that. We had one doctor tell us that if I can stay alive five more years, "That would be a very positive result." We told him that his statement is probably true in terms of statistics, but that it would not be such a positive result for us. I intend to be around for all my daughter's growing up. Anyway, stick around and feel free to private message me if you like. Becky

Ray, My experience was with Cisplatin rather than Carbo, but each time I had one really horrible day and then it got better. Hang in there--I know the stress of having no more sick or vacation time, Did your doc give you an anti-nausea prescription? Becky

DaveG and everyone else, I almost hesitate to post, for fear I might raise another storm , but I do want to say that I don't think people associate only lung cancer with smoking because they are mean or even necessarily as thoughtless as they appear. First, everyone knows the stats about how many of us are current or former smokers, and people naturally want a way to assure themselves that this tragedy isn't going to happen to them. (we do it all over the place--if someone gets shot, they must have been involved in something illegal, or whatever). The point is that as long as it is relatively unknown to the public that this could happen to them, we are going to have the question asked of us over and over. Becky

Cheryl, When I was diagnosed they put me through every scan they could think of. Partly that was because I am out of range of what is consdiered a "typical" lung cancer patient, so the oncologist was convinced that lung cancer couldn't be the primary. But mainly they are just trying to be thorough in making sure that they are doing the right treatment for you--if you have brain mets, they need to know as soon as possible. Becky

How about this one, "I sure would like to be able to take naps every day." (Said to me while I was undergoing both chemo and radiation.)

My husband talked to the pulmonologist today because we were both getting antsy that we hadn't heard anything yet. The news was not clear--he said that the report isn't in on the pleural effusion they sampled, but they think there were cancer cells in it. If so, that means more chemo instead of surgery. As for the PET scan, he said, "It showed basically what we expected to see." Curtis didn't ask him to clarify that, so at the moment I have no clue what that statement means. Is the tumor bigger? smaller? I had doctors tell me they saw both. I went in thinking that the lung tumor was responding and we were looking to see if the lymph node tumors were responding too, and now all I have is "what we expected to see"??? On the good news side, my air conditioner is working again--it was an easily repaired leak, so my old unit can limp along for a little while longer.

Great news! Here's hoping you stay that way, and that the rest of us get that news soon! Becky

Ada, Calling my cancer "their cancer" was just overwhelming anger and frustration coming out as I stood looking at people who have no real possiblity of not knowing how harmful smoking is and who choose to do so anyway. Anyone in this country under 30 has been bombarded with information since early childhood about the connection between smoking and multiple kinds of cancer, emphysema, etc. Most of the time I know that there is no purpose to asking why I have this wretched cancer--I'll never know. Maybe it was some random pollutant I inhaled one day which just happened to trigger tumor growth. I imagine that everyone on the board feels as angry as I do sometimes that this cancer has touched their lives. I knew my reaction to those young men was irrational, so I didn't do it, but I don't know how it's possible to be a nonsmoker with lung cancer and not have an emotional reaction to people deliberately increasing their chances to be here. It certainly isn't possible for me. During the course of this day and reading everyone's posts, I guess my first statement, written in the middle of a very bad night, has crystallized to this. I am a lung cancer patient just like everyone else, and I don't think I am better or more deserving of treatment than anyone else because I am a nonsmoker. But if there is going to be any good salvaged out of this for me, maybe it will be in the form of making a big public deal about the fact that this disease is horrible and it is not just about smoking. I remember that public perception about AIDS did not change until folks started coming forward who weren't gay and weren't drug addicts. Maybe the same thing needs to happen here. But I don't think I should gloss over the fact that if people didn't smoke, there would be a lot fewer of us suffering and dying. Becky

I had a bronchoscopy as part of my initial diagnosis. It is an outpatient procedure, with anesthesia. My doctor said most people don't remember any of it. I remember parts of mine--evidently I fought pretty hard at one point to sit up and cough the tube out. But anyway, it was not a big deal. I was dopey for a while because of the anesthesia and my cough seemed worse for a few days, but that was the only lingering effect. Becky

Thanks Rick.