texasone

Hello All, I haven't been here in sooo long, probably 2009. I forgot my user name and/or password at some point (typical ) and then became absorbed by the distractions of life... I am happy to report that, as far as I know, I am still cancer free, coming up on 7 years around July 1. I was dx with nsclc adenocarcinoma, stage 2 A, in June, 2008. Treatment was right lower lobectomy and adjuvant chemo. I know the early dx was likely a life-saving blessing along with prompt, aggressive treatment. I expected to keep on living so I started graduate school in May of 2009, and finished my masters in December, 2011. I started a new profession as an Educational Diagnostician in August, 2012. I am very happy that I made that change--still in a public school working in special education, but not as a teacher anymore. There have been more mostly positive life changes. Two years ago I ended a 13-year relationship that was never right for me in the first place and soon after that I decided to cease most contact with my 2 remaining immediate family members--mother and sister--due to their tendencies to become emotionally abusive without any warning. I had my quota of that growing up. Such behavior is unacceptable and I finally realized it was better for me to remove myself from their pathology. I have seen my mom a few times but I maintain a strong boundary on the relationship. I've had to deal with my own serious mental illness, ADHD, chronic pain management, serious allergic reactions to 3 antibiotics, 2 more surgeries (cervical spine and sinus), and frequent illnesses, some serious, but I'm still alive and kicking! Except for 2 years I took off while finishing my degree I've worked full-time since 12/2008. I'll be 62 in November and 3 years from retiring. I have moderate COPD but don't need O2. I just can't do vigorous cardio due to SOB (I have 55% lung capacity). When it gets hot the ozone where I live causes breathing problems, so I avoid outdoors when levels are high. My biggest problem is a serious lack of social support and social isolation. My son and grandkids live in Virginia, so there's no family near. Since ending the relationship I've not had much energy for "getting out there" to meet new people after work and taking care of the house and all. I live 30 minutes from the nearest city (which isn't all that attractive to me anyway) and there's nothing happening in my little town! I am not a conventional person and my life has been anything but ordinary, so I don't feel like I can relate to a lot of people where I live. I need to finish my home projects, sell the house which takes too much upkeep, and move someplace that fits my needs better! Thanks for letting me go on . I know I shouldn't complain. I am grateful to be alive and in fairly good health. I know it's up to me to continue to make the positive changes I need and be patient because the outcome is not in my hands. I believe there is a reason for everything that happens. Those beliefs are what helped me accept the lung cancer diagnosis and go on to live in spite of it without fear or dread of what was going to happen next. Peace of mind is the best thing.

Hi Joyce, Sorry to hear about your diagnosis, but glad you found this forum. Please keep us posted. Regards, Trayce

Hey Dawn, Great to hear from you! My summer's been busy, other medical concerns keep me on the doctor-go-round, lol, but i'm grateful to be doing well. Take care! Hugs, Trayce

Hi Linda, Glad you found us, but sorry you had the need to. I'm like you, the more info I have, the better i feel. I guess it gives me some feeling of control, at least I can be somewhat knowledgeable and not just blindly depend on doctors. Although, I'm very grateful for them and my good medical care. Keep us updated. Regards and Hugs, Trayce

Hi Brian, Glad to hear you're feeling better. Trayce

Hey Dawn, I thought I responded to you a while back, but don't see it. Maybe it was my old modem now since replaced. Wanted to try again, and I'd love to hear more from you. You sound like an amazing, spirited, fellow Texas woman! Hugs, Trayce PS I just added my signature, i'm sure it's one of the longer ones, lol, but one never knows when a detail might help someone

Hi Brian, Sorry to hear about your diagnosis, but glad you came here. I have been so busy lately haven't had a lot of time to post much. I wish I had some wise words of advice, but h*ll, I don't know what I should be doing with myself most of the time. I had an early stage diagnosis almost exactly a year ago, and I continue to hope for the best and try to prepare for the worst, if that makes any sense. I continue to plan for a future, just started grad school part-time, but sometimes I wonder if that's what I should be doing with my "spare" time. I don't want to realize at some point I've been spending myself foolishly, but there's no guidebook for this experience! I'm 55, a teacher, and yay, school was out a week ago. I've been stressing over my coursework, and decided to drop one class and take just 3 hours over the summer. I took a Maymester course, and finished it successfully, but had to ask myself, "Are you out of your mind?" It's hard for me to stop being a workaholic! I have a lot of other physical problems I'm struggling with right now, and seem to be going through a phase of trying to prove that I can continue to push myself as if nothing's changed. I have to get a pic line next week for IV antibiotics to treat a psuedomonas sinus infection, sheesh. I finally insisted on a culture a week ago, now we know what's been plaguing me chronically for the past four years since my second sinus surgery! I realize more and more how much I have to act as my own doctor sometimes. I learned Monday i have a new, huge bone spur poking my spinal cord at C5-C6, so there will be a surgery this summer, too. It won't be as bad as last year's thoracotomy, and I don't think it is cancerous, but better check that out. Doctor visits are taking an increasingly bigger piece of my time, not including oncology followups. I'm not complaining, but it's an adjustment. I have to be grateful for good doctors and health insurance, even though neither is close to perfect... When I start researching lc issues, I have a tendency to get a little freaked out. I know not to take the dismal statistics personally, so to speak, but I'm not in denial either. The folks here are amazing and proof that people live with lung cancer. I know i'm not in control of my destiny, although I advocate for myself as much as possible. I'm a fighter, but I need a level of acceptance to have any peace of mind. I guess I try to take things a day at a time, but probably need to make/take more time to reflect, prioritize. Sometimes I wish I had a crystal ball, but maybe that would be more a curse than a blessing! I'm not a religious person, but I turn to my spiritual beliefs, my creator, for comfort, strength, and guidance. I'm pretty self-centered, but do some service work for others which, ironically, helps me a lot more than them most likely. I'm addicted to the comedy channel, eat pretty much what I enjoy, and know if I count my blessings I feel a lot better. Sometimes I fear death, or dying, but I truly have no idea what happens after, but it might be the best thing ever. It's more fear of the unknown. My spiritual beliefs tell me to pay a lot of attention to death because it teaches me how to live, but that might not make sense to most people. I'm not very conventional in some ways, and proud of it, lol! Well, thanks for giving me an opportunity to blather on. I hope you get the best care possible to improve your status and be as comfortable as possible. I'm getting less and less stoic in that regard. Keep us posted, I want to hear how it's going. Hugs, Trayce

Hey friends, A new update. My "predetermination" through Blue Cross-Blue Shield was processed and I got a letter saying, yes we cover this procedure subject to the usual limitations, exclusions, etc. So my oncologist rescheduled. An hour before I was leaving home for the appointment I get a phone call. My insurance refused to pay, again! What is going on, I wonder. American Imaging, who is slowly taking over BCBS radiological/imaging decisions, state by state, said because I had a negative chest CT in April no pet would be approved, contrary to the letter I'd just received a few days before. When I called BCBS that same day, the lady said the pet was approved. (Course, I had that chest ct back in April cause they turned down the pet my oncologist had ordered, calling it investigational or experimental that time.) Seems they've one excuse after another, but the bottom line is BCBS contracts with them to control costs, period. I'm not comfortable with the assumptions this latest decision is based on--that there has been no recurrence with distant metastasis just because chest ct is clear. I've read the research, too, and if the decision-maker at American Imaging had stage 2a nsclc, s/he would want the pet to check for recurrence! I'd lay money on that. Thanks for letting me vent, but I'm tired of this runaround. I will take it to the next level of appeal....and am seeing my oncologist next Monday. Also, my neurosurgeon has identified a huge new bone spur impinging on my spinal cord, maybe he'll order a pet to check the possibility this is a cancer. Lord, I hope not, but I'll check with him. (I've had previous cervical bone spurs, so it's probably benign, but perhaps that will be my path to pet....) Trayce

Hi Lee, Welcome to this site but sorry you qualify as a member. My dad had scleroderma and lived to 77....he got esophageal cancer. I think your docs should be able to advise you about whether you're a good candidate for surgery, but I'd do some research or ask a lot of questions. If necessary, oxygen can be very useful for some, though it will create some restrictions. Having copd and had one lobe removed, I too wonder what would happen if i had a recurrence, but i'll cross that bridge if i come to it. Best of luck to you, and keep us posted! Hugs, Trayce

Welcome Pixie, glad you found us. Being diagnosed was scary for me, too. Glad you have good support and are receiving treatment. I still get scared sometimes after almost one year since dx, but most of the time I'm able to let go of that. I don't want to sabotage my life with fear and worry. I just do what I can to get better and hope for the best. Please keep us updated! Hugs, Trayce

Welcome Pixie, glad you found us. Being diagnosed was scary for me, too. Glad you have good support and are receiving treatment. I still get scared sometimes after almost one year since dx, but most of the time I'm able to let go of that. I don't want to sabotage my life with fear and worry. I just do what I can to get better and hope for the best. Please keep us updated! Hugs, Trayce

Thanks for your wishes, Barb. I'm so sorry about your loss of your husband. I hope you're finding the support you need nearby, and on this site. Take Care, Trayce

Thanks for your wishes, Barb. I'm so sorry about your loss of your husband. I hope you're finding the support you need nearby, and on this site. Take Care, Trayce

Hi Amy, Sorry to hear about your diagnosis, but glad you found us so quickly. Sounds like you're getting good treatment. I hope you'll keep us updated. I wish you a cure and a healthy baby. Hugs, Trayce

Hi There! I posted my introduction some months ago, but would like to add some followup. My thoracic ct from 4-09 was clear! yay! Pleural effusion has disappeared (took about 9 months) and lymph nodes even smaller. However, my oncologist had ordered a pet scan but my insurance, Blue Cross/Blue Shield of Texas, denied to pay for the pet and classified it as "investigational or experiemental"! All my anxieties about the scan turned into instant anger! I went ahead and settled for a ct to see how my lungs and thorax looked, and then started talking to family and friends about what to do next. Based on encouragement from them, I've contacted my oncologist and asked that they request a "detemination" from the insurance. That's my first line of appeal. Also, ironically, I get regular check-in calls from a BCBS nurse who helps me with any questions and follows my treatment, etc. She advised me to ask that the "determination" be made by a peer oncologist, not just any old doctor. I feel better now that I've set those wheels in motion. I will appeal the denial of the pet scan through as many levels as it takes! I had never worried so much about any scan as that one. I didn't expect it to show any new cancer, but was so looking forward to hearing ned I hear that's very normal for my "stage" of treatment/recovery. I was staged 2A adenocarcinoma 6 '08, rll that month, clean pet pre-chemo about 8'08, then 4 infusions carboplatin/taxol 8 - 10 '08. Chest ct in 11'08 was also clear. I want the pet and am not comfortable making assumptions about my health with this disease! I understand pets cannot detect lesions < 8 mm, so it's possible the scan in 8 '08 missed something. Further, I cannot be certain the chemo killed every cancer cell. My cancer was aggressive--although I was early stage, I still had two foci of cancer in that lobe and the cancer had also metastasized to one lymph node. My goal is to be diligent and if there's recurrence, I hope to start further treatment without delay. I believe one pet scan a year is a really good idea, at least for now. My oncologist had planned to alternate pets with cts for the first two years, so he thought it was the best plan, too. Otherwise, I'm feeling pretty good despite new problems with a prior cervical disc fusion--scheduled for a myelogram to determine what treatment I'll need for that! No worries, I can handle a second cervical surgery if necessary. Anyway, thanks to all for your encouragement and support. Hope I'll see you soon in our chat here. I'll keep posting updates! HUGS, Trayce PS I started a fund here under "Trayce Skidmore" (my maiden name.) So far four have donated a total of $175.00! I'm sending emails to friends and family and hope they'll spread the message.

Linda, Glad to hear you're being well taken care of by the hospice folks. You sound in good spirits Please stay in touch so we can know how you're doing. Send me a message if you'd like my phone number. Sometimes it helps to talk to another survivor. Katie and I are trying to start one or two lung cancer support groups in the Fort Worth area. There aren't any, yet. I'm off for spring break this week, so hope to make a little progress in that direction. Hugs, Trayce

Hi mwga (I probably got that wrong, sorry I'm a newbie to this site, but really enjoyed reading your story and other posts. It gives me hope! You are a courageous woman, and an inspiration. I had surgery, rll, and chemo last year, and have finally started exercising this week! I returned to work more or less full time on 12-1, and have been fairly active, clean house, etc., but nothing really aerobic. I'm happy to report I can spend about 25 minutes on my nordic trak and not be too short of breath. I'm so grateful, and out of shape! It's funny, my breathing actually improved 3% after the lobectomy--it was 58% last October. I hope it will get even better. In the back of my mind, I'd like to have a little more reserve in case they ever need to take more out, ya know? I believe the more grateful I am, the more I'll have to be grateful for. I pray to keep that attiude. Regards, Trayce in Texas

Hi Linda and All, Just wanted to mention to Linda I sent you an email response yesterday (3-10-09) to a post you made about 3 weeks ago. I don't know if you check your email, some people don't. I have two wigs but enough hair to cover my scalp now so I'm going commando, lol. I think I look a bit like a little boy, but so it goes . I hope to get highlights over spring break (i'm a special education teacher.) I hope I won't need the wigs again...they are much nicer looking than my own hair, lol, and so easy. I may wear them from time to time even though i've got hair again. I hope things are going well for you. Warm Regards, Trayce

Hey Lori, Sorry to hear about your mom, but sounds like she's getting good care. The rehab hospital sounds like a good option. My step dad recently went that route. Three in my family were diagnosed with cancer last year, sheesh! A cancer diagnosis is difficult for any family. I can relate to all the freaky reactions and stuff among your family members. I could hardly stand to deal with my sister the whole time was dad was in treatment two years ago. He lived about 4 hours from us, we both work full time, it was very hard. I'm what I call a "recovering" control freak, and I think of my sister as the queen, lol. I'm glad you came here for support, there are some wonderful folks on the site. There's also chat every other Tuesday night at 7 pm. We'll meet in the room again on the 17th though the chatroom's always open. Maybe you'll join us? I'm hoping to get a local lc support group going soon, I could go on and on about that Anyway, take care and I hope you'll be able to come see your mom soon. Regards and hugs, Trayce

Lynn, Ned, Bud, Wendy,Christine, Donna G., jztdzy, Patti B, Katie, and Judy in Key West, Thanks so much for your posts, you've made me feel welcome here. I can't wait to read more of your stories. Your messages are inspiring. Katie, I and others (?) are hosting a new (first?) lung cancer survivors group meeting in the DFW area this Saturday, Feb. 28, 2009. I look forward to meeting Katie and others and hope our group grows. You know what I mean, I hope more and more with lung cancer will survive and come to the meeting for encouragement, info, etc. I still tend to forget Tuesday chat night but remembered tonight. I enjoyed meeting a caretaker who lost his mom to SCLC ten months ago. It was great chatting with him. I saw my oncologist and will have a pet in late April; I expect good news. I'm looking forward to a year since diagnosis at the end of May. My pn pain remains, but is quite manageable with minimal medication daily. I hope it gets better, but I've got to start exercising some, walking at least, and see how that goes. I still have to dismiss thoughts that every ache and pain is cancer, this disease can sure make a hypochondriac out of a person! I already had those tendencies. Work has been going well, but I tend to miss about 1/5 days due to just getting tired. Thankfully, they are understanding about this. I'm actually enjoying work, though. I was a little sour about it back in December, but after almost three months back, I realize this year is much better than the previous three. My school has made some changes that have had a positive effect on my little corner of things. That's a great blessing for me, my job used to leave me feeling pretty bad and desperately looking for something else. I'm applying to grad school (talk about optimistic) so I can change careers in about two years, but stay in the public school and same retirement system. It would be an excellent move for me. The courses ares all on the internet, so I'll see how it goes this summer. I'm hoping to get a tuition scholarship, wish me luck! I agree that life will never be quite the same, but it never is anyway. Lung cancer is another chapter, and I'm hoping not the final one. But, if it is, I will have to accept that and make the best of it....and lean on you guys and others to help me as long as possible. I hope I can do the same for others. I seem to be in a place now, spiritually, where I'm able to enjoy life as much as possible every day, and appreciate things more. That's not always been easy for me, so maybe it's a gift cancer has given me. Well, I must figure out how to update my progress, I'm probably writing this in the wrong place . Warm Regards, Trayce

Hi, I was diagnosed with lung adenocarcinoma last June (2008). Surgeon removed the lower lobe of my right lung, and I did four infusions of chemo from August through October. They gave me taxol and carboplatin. I was fortunate to be staged 2A. What brought me to diagnosis was caughing up a small bit of bloody tissue following by brief mild bleeding late last May. Long history of heavy cigaret smoking. I'd been experiencing worsening shortness of breath that spring, and had increasing chest tightness and discomfort for about 3 years prior. I had been planning on seeing a pulmonologist for the first time right before all this happened. When I look back now, I wonder if I should have seen a pulmonologist sooner. No evidence of further cancer in any of my prechemo scans, clear chest CT in November. I turned 55 that month, and had my first year, again, off cigarets. I was able to return to my teaching job Dec. 1, but have had to take days off here and there to rest more. Still have much pain due to peripheral neuroropathy, and some shortness of breath, but otherwise doing well. I've been pretty positive through all this, and I think my most difficult time has been resuming "normal" life. I was, am, very fortunate to have a job, good health insurance, and a disability policy to help cover expenses while I was off work 4 months. My surgery went well though was horribly painful at first, chemo went well except for the anemia at the end. My prognosis is better than I expected when I first learned i had lung cancer. Still, I spent 6 months last year devoted to treatment, and trying to get back on track is overwhelming sometimes! I'm not very happy in my job as a teacher, and I wonder if it's even good for me. I just got sick with a horrible cold that's put me in bed for 4 days. I hope my immunity will improve with time....but am seriously considering a career change. Lot to consider.... I keep forgetting to vist the chat on Tuesdays, but will try to show up. I think it would be great to get to know others who are dealing with this disease. Thanks for reading! Trayce UPdate: thoracic ct 4-09, clear insurance denied the pet scan my doc wanted me to have : (