beckyg

Here is the picture for those who may not have seen it. Taken in September 2003. Curtis

This is Curtis writing, of course, but I knoe Becky's password. So let me start by quoting her first post here: My name is Becky. I am 30 years old and have never smoked. I was diagnosed with NSCLC in January (2003) after complaining of a cough that would not go away. They orginally thought it was stage II, even after multiple scans, and I was scheduled for a lobectomy on Valentine's Day. When they had me out on the operating table, the biopsied my mediatinal lymph nodes and found cancer there. The plan at this point had been to just sew me up and send me to a medical oncologist. However, there were complcations in the form of uncontrolled bleeding in my chest that caused the surgeon to crack my breastbone and open me up to stop it. After that I spent 4 weeks recovering and started chemo and radiation concurrently with the hope of controlling the lymph spreading so that I would be a candidate for surgery. I had 34 radiation treatments and two rounds of Cisplatin and Etopicide. The radiation wasn't so bad, but chemo weeks were absolutely miserable. Now I am almost 4 weeks past treatment. My hair is starting to come back in. I just got the results of my CT scan--the tumor hasn't shrunk much, but the oncologist said it looks "beaten up". He is hopeful that the miscroscopic tumors on my lymph nodes took a good beating too. Next week I head to Houston to see what is next. My oncologist here says that it wll be a surgical decision, but he expects that I will be back in surgery before long. Hopefully it will be more successful than the last one! My family, friends, and employer have been amazing through all of this. My daughter is almost three years old and has handled all this stress better than I ever imagined. For six weeks I couldn't pick her up and when she sat in my lap she had to be very careful not to hurt my chest--she just said, "You can't carry me because of your owies." When my hair fell out, she said, "You got a BIG haircut, Mommy." I had been in a new job for less than six months when the diagnosis hit. I missed a lot of work, but have not missed a paycheck. We had meals delivered by friends 3 or 4 times a week for three months. It's not exactly true to say tht I am looking forward to surgery--the last one was far from pleasant, but I am definitely ready to get on with the program--the waiting is so hard. Becky Ok, now it is Curtis to continue the story. The second surgery never took place because of pleural effusion that contained tumor cells in her right lung. And so we tried taxotere. No shrinking. Then Iressa, which kept things stable for five beautiful months. But in December, two spots were found on her left lung, too. And so followed a third type of chemo. It was basically ineffective, not touching the tumor in the right lung at all. Throughout this process, she dealt with radiation pneumonitis and the tough time breathing associated with it. That came on in July for the first time. But steroids seemed to make it better, so that except for three weeks in July, she was able to function without oxygen all fall. She would sleep with it, but not need it all during the day. After the spread in December, she needed the oxygen more continuously. But she was always able to teach. She missed only two days of classes in the spring, and they were both to go to see the doctor in Houston. Her decline was sudden. On March 6, we had the nicest day of the year. Our best friend Sarah's daughter had her fourth birthday party. And Becky spent that entire party off of oxygen, helping Katie throughout their gigantic backyard and onto and off the trampoline. On the 15th, we took Katie and our nephew Nickolas to the zoo in Tyler, and had a fabulous day. The 20th was another great day, as we went and bought clothes for her to teach summer school from the mall in Lufkin. And she needed her oxygen to get up and down the mall, but she walked the whole way. And she taught her classes that week, of course. For the last few days, let me just copy the post I made that night: Becky died tonight. I guess that says it all. Last Saturday was a good day; we had gone down to the mall and she walked up and down it getting some new clothes to teach her late spring and summer classes in. But Sunday she felt worse, and while it stabilized, it never seemed to get better. So she got subs for her class on Friday, and we trucked down to Houston to have a bronchoscopy. Her right lung was entirely collapsed, which we knew from the previous ct scans, but it was not because the tumor was blocking the airway, which was what the doctor might have been able to fix. All day Friday, she was drowsy and coughing from the bronchoscopy, as expected. Yesterday her breathing was a worse again, the worst it had been in months. This morning was even worse, so we called the doctor and had her taken into the emergency room. Her blood oxygen levels were very low, so they put her on a much higher flow, and she really seemed to be doing better. Moving into the ordinary room was traumatic since it meant cutting off for a few minutes the higher level of oxygen, but after a few minutes, her breathing and voice were stronger than they have been in the last week. About 7:30, she took a turn for the worse. The nurses called the doctor, and they were about to put her on a ventilator when she blue lined. They were able to get her onto the ventilator and into the icu, but she was basically gone by 8:00. The last things she responded to were the things I most needed her to know, the promises I most needed to make. By the time her parents came in she was no longer looking in the direction of sound as she had when I was with her. The scans basically showed that only one fourth of her left lung was operational; her right lung was entirely tumor and the left lung more tumor than we had ever seen and pneumonia to boot. So there was no point in prolonging her suffering; her three doctors, her parents, and I all agreed, and we removed the ventilator. Within minutes, she was gone entirely. In some sense this is what we prayed for. Obviously, we wanted remission, we wanted a cure. But failing that, we prayed for a minimum of suffering. Becky was able to teach her classes on Thursday. Tomorrow I will go tell her students that she is gone. Back to the current: There have been many blessings that surrounded us in this. Not the least of which is that Becky was never dying of cancer. She lived with it; then she had died from it. But a half hour before she died, she was correcting a project she was planning to give her students in the fall, because we both thought she would be teaching in the fall. So hers is a story of victory even in death itself. Our family, friends, and especially Becky's co-workers and students continued to be tremendously supportive throughout; the debt of gratitude I have to them will never be repaid. It is perhaps the best tribute of all to an amazing woman who I miss with every breath. More breaths are happy now than months ago, but none as happy as they would have been with her here. I have been meaning to put this story in for many weeks now, but finally tonight mustered the strength. I miss you, my love. May God bless us all. Curtis

I wanted to post one more time with Becky's login to show off that beautiful picture. We are doing okay. The memorial service was beautiful, including Becky getting to roll her eyes one more time as my father overdid it on his eulogy. The highlight was a slideshow that one of our cousins made of old family photos, which was projected onto the screen throughout. Is there a way to post files? It was in powerpoint, and I am sure that many would like to see it. Many great stories were told, like the first time she cooked for me I vomited for 36 hours. Or the time Katie locked Becky into her bedroom or .... Katie is sad, but doing better than I would have thought. My grandmother died in December, which gave us a chance to ask and answer many questions that have helped her understand a little bit of what is happening. Last night was our first night alone after the family left, and we did okay. There was one time when I was about to lose my temper, and I could just feel Becky grabbing my arm the way she would when I was steaming, and telling me I just don't have the luxury of anger right now. And then I was better, and Katie was better, and it was bedtime. Please keep praying for us. We have set up a scholarship in Becky's memory at Trinity University. She won the Outstanding Junior Award from the math department a couple of months after we started dating. The award has always been a book and lunch with some of the professors. Dry reading and dry people, as she called it. Well, now it will have some teeth. If you are interested in contributing, please make sure Becky's name is on there somewhere, and send it to Trinity University, 1 Trinity Place, San Antonio, TX 78212. Again, thanks so much for everything. Curtis

I heard back from the research nurse at Mary Crowley late yesterday afternoon and he said that Iressa was not a problem for this trial--the only requirement is that I have to have been off Iressa (and all cancer treatments for at least a month. I asked him about the changing requirements that Cheryl mentioned, and he said that he knew there was a proposal for changing entrance requirements but he didn't think that it would allow samples to be taken fro inside the lung, but he would check on that. Becky

I just e-mailed them about that. I didn't mention Iressa in my communications with them yet, so Cheryl's comment about Iressa was news to me. I hope it isn't a problem, but I fear it will be. I am off to talk to the oncologist about chemosensitivity testing before I go have my bronxchoscopy on Friday. It just makes so much sense to me and I am tired of taking chemo that doesn't do me any good. I'll let you know what he says. Becky

I am looking into this one too. I contacted th Mary Crowley Medical Cetner in Dallas about the GVAX trial. I was inelgibible for it, but thy proposed this one to me, and it looks like it may be a fit. I am in the process of gathering records for a consultation there with them. Becky

Curtis and I are planning to be be there. We have family in town so we should have a place to stay, btu I am really looking forward to meeting some of you people. Becky

Guest: I agree that it is disturbing how little progress has been made with all the money that has been spent. I know i have a strong bias, but I am really unwilling to agree with you about putting all the eggs in the prevention basket. I never smoked. I was 30 years old when I was diagnosed. Nobody would ever have considered me "high risk" for cancer, especially lung cancer. So my only hope is cancer research. I think the problems with cancer research are the ones brought up in the article--too much effort is focused on very small improvement; not much is being done looking at the big picture, and when someone has a new idea they have a really hard time getting funding to investigate it properly. Another thing discussed at great length in the article is the known fact that mice are not very good models for humans in testing cancer drugs. What works wonders in mice often has no effect on humans. The reverse is very likely also true, so it's likely that lots of drugs that might have been effective in humans have been discarded because drug companies and the FDA still hold mouse trials as an important step for approval. Becky

Heather, The article made me think the same thing. I am on a mission this afternoon to find out more about cehmosnsitivity testing. I hadn't been very interested befreo because I have had so many chemo drugs now--it didn't seem worthwhile to pay for someone to tell me that none of those would work on my tumor since I already know that. But if one of those labs will test my tumor and find a combination of 5 drugs that will work--that would absolutely be worth it. Becky

Curtis picked up Fortune magazine yesterday at Wal-Mart--the cover article is something like "Why we are losing the war on cancer, and how to win." In some ways it is a pretty depressing article--it basically says that apart from a few kinds if cancers (mostly childhood cancers and leukemias) most of the improvement in survivial rates across the board for cancer in the last 30 years has come from improved detection. In 1970, about 50% of people diagnosed with cancer lived 5 years. Now that number is up to 63%, with most of the difference being people diagnosed earlier than they used to be. However, the interesting part was what was said about how to fix the problem. The article says that the real problem is how research is funded--that researchers get grants for studies that answer very narrow questions . The funding just isn't there for people who want to look at cancer systemically, so this is why clinical trials and so many of the drugs coming out are about incremental changes--this drug shirnks tumors in 12% of patients rather than in 10% like the stabdard therapy. Being in academia myslef, I know very well this is the way researtch money goes out--agencies funding research like hard science to come out, with all the loose ends tied up, and you can't do that if your scope is too big. But they point out in the article that we didn't make the strides we have on the last 30 years against heart disease by tying up all the loose ends before changing treatment. We know that not everyone with high cholesterol or hypertension will have a heart attack, but we treat those things because they are big risk factors. We don't do the same with cancer--nothing changes until the science is "well understood". The other thing I found interesting was that several of the doctors compared cancer to AIDS in this way. There really was no good control over AIDS until they found the right "cocktail" of drugs. I don't know how many drugs are in that cocktail, but it is a pretty big set, I think. The researchers interviewed believe that the key to cotrolling cancer is going to be cocktails of drugs--maybe 6 or more drugs at a time. Thi9s again is were research protocols are causing a problem--if you test 6 drugs on human studies and they have bad reactions, it is hard to figure out where the problem is. I am not knocking Scientific Method--I am a scientist at heart and I think it is important to understand as much as possible. I just wish we could find a better balance. I think there is plenty of money out there for cancer research--I just don't think it is being spent as well as it could be. Anyway, read the article if you are interested. I think I hit most of the highlights here. Becky

Clarification--he never said that it is rare for people to get fibrosis, but that if it were fibrosis, the steroids shoudln't make much difference. I notice a big difference in my breathing between 10 mg a day and 20 mg a day of Prednisone, which he said points to inflammation (pneumonitis) rather than scarring (fibrosis).

I took yet another trip to Houston yesterday, this time just to see my pulmonologist--the only one of the many doctors I have seen in the big city that I care to see again. I saw him in January after I had to go to oxygen 24/7. He set me up with a nebulizer in and attempt to get off the Prednisone--he ordered liquid steriods for the nebulizer, and said that I should be able to drop the prednisone and still get more steroid help directly to my lungs, rather that coursing throughiut my body. SO that worked great, for about 2 weeks. I cut the prednisone down; the breathing was improving--I still needed the oxygen to do anything ,but I was taking it off when i was sitting still in my office. Then my breathing abruptly got worse and no one can say why. SO I increased the pred again, whihc helped the breathing, but then I started seeing double. Anyway, I saw the pulmonologist yesterday, and he said several things. Firstv he said that it is very rare for radiation to continue to cause inflammation 10 months later, which is where I am, but that if it were scar tissue causing the breathing problems, steroids shouldn't be having much of an effect on it. So he ordered another CT scan to take a look, and he wants me to come back soon for a bronchoscopy so he can really get a good look. He said he suspects that my tumor is trying to close off my airway, and he can try to open it up during a bronchoscopy. He also sias he was worried that radiation might have damaged my heart and that might be the cause of my shrtness of breath, so he sent me to a cardiologist. She did an EKG and an extended sonogram and told me that heart is in good shape--it is beating well and strongly and there is no pericardial effusion. So at the moment i am still not breathing well and I am really frustrated by it, but it makes me feel a lot better to have someone with ideas, trying to figure out what the problem is instead of just prescribing more drugs all the time. I don't know when I start chemo again--probably next week sometime. My oncologist took the week off for Spring Break this week. Becky

I have written my diagnosis story more than once on this board--I think it is on the Welcome section somewhere. But in the last year I have thought a lot about symptoms that i had been having for several years that are now explained by the lung cancer. I had bronchitis at least twice a year every year--doctors treated it and told me I had seasonal allergies. I live in a pine forest--it seemed reasonable. I have been shorter of breath than the people around me for at least four years. I wrote it off to the weight I gained in graduate school and to not exercising like I should. I have a semi-permanent knot in my shoulder between the right shoulderblade and my spine that has been there for years and is always sore. Massage helps it, but it never goes away. Doctors told me it is a result of stress. Now they tell me that my shoulder hurts because of where my tumor is and the nerves it is pressing on. Aside from doing more checking on the frequent bronchitis, none of these things are probably enough for a doctor to have started thinking lung cancer in my case. But I hadn't had a chest x-ray for almost 20 years in spite of at least 15 rounds of bronchitis in that time period and 2 diagnoses of pneumonia. Would an x-ray have caught it sooner? I don't know--depends on how much sooner the x-ray was taken. When my tumor was found, it was the size of a chicken egg, so it very likely could have been seen a year or two sooner. But I would have had to have known that my symptoms could be worse than just allergies, and I would have had to press for more tests. Becky

Angie, I like the idea of thinking of the oxygen as another prescription drug. I have been on and off oxygen since July. More time off the oxygen in those months than off--so also keep in mind that as his bronchitis clears up, he may not need the oxygen anymore. But even if he does, you learn to live with it. I can't walk as quickly as I used to, and there are days when I get really frustrated with that tube following me all over the house and the noisy cart I have to drag around at work (Just once I would like to sneak up on someone again!), but without the oxygen, I wouldn't be at work--I'd probably be at home crying and feeling sorry for myself because I can't breathe well enoguh to do anything else. I guess my point is--don't let the oxygen get you down. It is inconvenient and it does really drive home how serious everything is, but it helps so much. Becky

Oh, how often I have seen this story in real life.

Reminded me of another one. Two of my cousins were visiting grandma and she put them in the bathtub together at the end of the day. They were probably 3 and 5 years old. She thought they were so cute she went to get a camera to take their picture. When she came back in , Christie told Brad, "Don't look at me. That's dirty." Brad said, perplexed, "How can it be dirty when we're in the bathtub?"

My doctor tells me to call if the fever gets above 100.4. But call before that if you are concerned--he'll either be concerned to or tell you not to worry about it. Becky

Angie, It reminds me of a story about my brother. My family went for a vacation in Fort Lauderdale when he was maybe 10 and I was 12. We were staying at a hotel on the beach, and as we drove up, my brother said, "Wow, look at all those condoms on the beach!" My prents looked at each other and started asking him questions until they discovered he meant "condos". Apartments and condominiums in our part of the world are not normally in huge buildings like those, and he was impressed by them. But it was interesting listening to Mom and Dad try to explain the difference between "condos on the beach" and "condoms on the beach". Becky

Heather, Radiation just keeps on giving and giving and giving. I have been told that the effects can last "up to 6 months" after the end of treatment, but I think I have blown that theory out of the water. I continue to have inflammation in my lung that is caused by the radiation--I have been on prednisone constantly since July. Lately I have started having the "stuck pill" problem more often than usual--not enough that I am ready to start investigating liquid medicine, but enough that it is annoying. No advice here--just confirmation that you aren't the only one with the problem. Becky

It's been years since I heard that little gem. Now the tune is stuck in my head (and I can't remember all the words either!) Becky

MaryAnn, Thanks for the tips. So far I haven't heard anything back from the company, but I didn't expect to get an immediate response on a Friday afternoon. The oncologist still has more traditional chemo drugs up his sleeve if this doesn't work out, but I will keep trying a little longer before I give up on this trial--it just seems more hopeful than anything else out there right now. Becky

It seems like Cheryl posted a couple of weeks ago a link to a Cell Genesys page which had the locations on it. I have been trying to find that again this morning and can't--and my copy that I printed out is currently in my car in San Antonio. I did find a site about the trials--look up GVAX and you wiull quickly find pages about open trials, and the lung cancer one was easy to find. I haven't found the info about particular sites today, but I did find a phone number to call for information. I have left a message and am now waiting again to hear what the company has to say. Becky

Thanks, Becky! I'll keep that in mind. Becky

My oncologist left me a message late yesterday afternoon. The folks in Tuler called back finally to say I am NOT a candidate essentially because my cancer hasn't spread enough. Basically, they want there to be tumor in the lymph nodes in my neck or armpit--somewhere they can get a sample without putting me under anesthesia. Since getting a piece of mine would involve a bronchoscopy or possibly an incision between my ribs to get at the pleura, they don't want me. I am about to call and see if I can find out if this part of the research protocol or if it is just the Tyler Cancer Center that doesn't want to mess with me for this. Maybe the Dallas location would be more agreeable; or maybe if I can get someone else to get them a sample... Don't know. But I will at least ask the question. I was really discouraged last night about this--I had such high hopes and my options are starting to get fewer and fewer and I am so not ready to die. But this morning I at least have a plan, so I feel a little better. I'll let you know if I find out anything--hard to get answers on a Friday sometimes. Becky

Paula, I taught undergrad math classes in grad school. When I started, I was a TA with little control--I just basically did review sessions and graded quizzes. By the time I left grad school, I was teaching all over the curriculum; writing my own syllabus and all that. I had more supervision than I would have as a professor, but not much. I am not certified to teach middle of high school math--never took an education course in my life. Becky