CaroleHammett

Hi, Linda and Judy and thanks. I forgot to add that my hospice doctor immediately put me on anti-seizure meds (Depakote) and also took away my car keys. I have no idea how effective the Depakote will be, but if I do nothing, it won't matter because the growth of the tumor will cause a reaction anyway. The report does show very little edema (swelling), which is apparently the base cause of the seizures anyway. Right now, the hardest part is trying not to over-analyse prior to the PET scan. As I wrote earlier, until I know how far gone I am since last summer, I won't know whether I'll be doing anything at all. With love and affection, Carole Don't be afraid of death... Be afraid of the unlived life.--Tuck

Well, it's another case of good news, bad news: The bad news is that the brain MRI shows metastasis to the brain. The good news is that the brain MRI shows only one 9 mm nodule. The bad news is that the nodule is attached to the visual cortex, meaning that if I experience further seizures or growth in the nodule, I may go blind. The good news is that I'm far more likely to go blind than ga-ga. I've already met with my old radiation oncologist (to whom I gave a copy of my brain MRI and the radiologist's report). He's recommending WBR on the basis that if one nodule has already appeared there are undoubtedly more to follow. A cyberknife oncologist now also has a copy of the brain MRI and radiologist's report and he will be providing my naturopathic MD (Vitamin C infusions) with an "unofficial" (no fee) recommendation. My hospice doctor and my oncologist are requesting that another PET scan be done so that I can make an informed decision as to whether I want radiation at all (For example, if a PET scan shows that I'm about to kick the bucket, then I'm not about to reduce my Quality of Life during my remaining time with radiation side effects.). A chest x-ray taken last week, when compared to two earlier chest x-rays, shows that during the past 14 months: (a) In the first 7 months, my original tumour grew 1.8 cm. ( In the second 7 months, my original tumour grew only .7 cm. What this tells me (by implication) is that once I started taking large doses of Vitamins C & D (during the second 7 months), the progression of my cancer slowed to less than half. Once I have more information, I will "officially" post my findings somewhere "appropriate" (under Treatments or somesuch) in order to gather more information (Knowledge is power.). In the meantime, I continue to consider myself one lucky woman and to treasure every waking moment. With love and affection, Carole One's destination is never a place, but a new way of seeing things.--Henry Miller

Actually it wasn't scary at all (but do keep in mind that my dad used to tell people when I was a kid that I wasn't brave, just too stupid to be scared ). Unfortunately, the latest news is potentially not so good. After having the TIA on 01/19, last Thursday (01/29), I had two oxygen "episodes." Each lasted less than five minutes, but during them, my O2 levels dropped to 69-72% (rather than the minimum 92% that I usually achieve with only 1-1/2 liters supplemental O2). I was at the clinic when they occurred, about a 1/2 hour apart, and after the second one, my RN (using her stethescope) could find no air flow in either of my lower lobes. When the air flow did return, it returned first in my "bad" lobe (the one with the original large tumor), then in my "good" lobe (which has had, at the very least, multiple nodules since last July). These did not appear to be related to my cancer since I returned to my "normal" 91-94% within a few minutes (if due to cancer progression, one would expect a gradual increase in my supplemental needs, not drastic spikes). When I told my hospice doctor the next day, she advanced the possibility that both the two O2 episodes and the earlier episode that we all thought was a TIA may have instead been signs of seizures. She immediately prescribed anti-seizure medicine (Depakote), told me to stop driving and ordered a brain MRI since, if they were seizures, the most likely cause is brain mets. She was able to order the MRI, despite my being on hospice, due to the fact that back when I went on hospice, I had told them that if I had brain mets, but was otherwise okay, I might be willing to undergo radiation, depending on the test results and my overall situation at the time. When I called to make an appt for MRI, the imaging department told me they couldn't get in until next Sunday 02/08. I seemed to be handling it okay Friday night, but Saturday turned into "anxiety attack day" (those of you who have read "My Story" know that brain mets have been my nightmare; i.e., I was actually glad I metastasized to my liver!). In the past I've usually been able to get squeezed in the same day, but that was because I was at the clinic making a personal plea (playing the cancer card) so when I told my girlfriend what was up yesterday, she volunteered to drive me to clinic (about 15 miles from here) today so I can try and get them to squeeze me in (or at least to get an earlier appt.). The reason I want results asap is because they will determine several choices I might be making; i.e., if multiple nodules calling for WBR, I might decide to have no treatment and also to halt supplemental Vitamin C&D so as to give my liver a chance to beat my brains. On the other hand, if only a few nodules calling for cyberknife, then I might decide to go for it since in this case, I wouldn't be as susceptible to either (a) being ga-ga; or ( the severe fatigue that often accompanies WBR. There is always the possibility, of course, that the MRI will show nothing (that would be the best news, of course), but if there are brain mets, I'm wondering if Vitamins C & D are inhibited by the blood brain barrier, which would explain why the progression of my cancer has slowed to almost a halt in my liver, lungs and lymph nodes, yet appeared new in my brain (if anyone knows anything about the BBB and Vitamins, I'd appreciate your filling me in). And yes, I realize I'm getting ahead of myself and need to stop doing that (Carpe Diem!). I will fill you all in once I know something. In the meantime, you may not see much of me since I have out-of-state family flying in for the week. With love and affection, Carole PS I think 'd rather be a Playboy Bunny--or at least look like one. Treasure every moment as if it were your last.--Carole Hammett

Well, I now have the ingredients, but (unfortunately), this was a "fatigue" (and stress) weekend so I'm going to wait 'til my cousin arrives on Tuesday and we'll make it together (translation: she can make it while I hover nearby ). Affectionately, Carole Treasure every moment as if it were your last.--Carole Hammett

Hey, Becky: Since I've been "sex-partnerless" since my dx (celibate as a nun!), maybe I should try donating my red wine to potential lovers in order to make me look better to them! As to Resveratrol, Judy, aging isn't the reason I'm taking it. There are numerous studies re its benefit in respect to lung cancer specifically. There are also numerous postings about it on this site; ergo, my remark about Greg and Barb turning me into a raging drunk because I've been trying to potentiate the effect of both red wine and Resveratrol by using the former to swallow the latter. To review just a few of of the Resveratrol postings on this site (Greg, Barb and I), click the following Google search link: http://www.google.com/search?hl=en&as_q=resveratrol&as_epq=&as_oq=barb73+gpawelski+caroleammett&as_eq=&num=10&lr=&as_filetype=&ft=i&as_sitesearch=lungevity.org&as_qdr=all&as_rights=&as_occt=any&cr=&as_nlo=&as_nhi=&safe=images (If you do a general search of this site for Resveratrol, you'll get hundreds more hits.) Affectionately, "Sister" (and occasionally "Mother Superior") Carole Treasure every moment as if it were your last.--Carole Hammett

Hi, Lynn. At this point, we don't have a clue as to where in Florida... my daughter's going to start checking out cheap fares/packages tomorrow with our primary criteria being warm and short. If I had my druthers, it would be Key West (I was last there in the late 70s, loved it then and would love to see it again), but we're afraid the length of the trip (2 legs) would be too much for me. If my doc says okay (the TIA may have put a twist in things), the most likely flight would be a direct Denver-Miiami with a stay at a nearby resort. Affectionately, Carole One's destination is never a place, but a new way of seeing things.--Henry Miller

HURRAH!!!! Great news, Linda. Have a wonderful time! With love and affection, Carole I'd rather die while I'm living then live while I'm dead.--Jimmy Buffett

Hi, Chris. Just a quick note to let you know I haven't forgotten our miso soup, just haven't made it to the organic store yet. My mom flew in last week and between her visit, my TIA and my Inauguration Day party, I'm behind on everything. The good news is that tomorrow afternoon my hospice volunteer is taking me shopping so I should be able to report in this weekend. Thanks again for posting the recipe... my mouth's been watering for weeks. Affectionately, Carole Life is not measured by the number of breaths we take, but by the moments that take our breath away.--George Carlin

Hi, Barb and thanks for the posting. Also, a reminder that cataracts are also a side effect of Prednisone, a drug often prescribed to lung cancer patients who have developed radiation pneumonitis from radiation therapy. Affectionately, Carole Life is not measured by the number of breaths we take, but by the moments that take our breath away.--George Carlin

Hi, Randy and thanks for the posting. I experienced several episodes of depression back in the 90s and early 2000s. At the time, I sought help (belatedly) and then learned (the hard way) that my body doesn't "like" psychotropic drugs. We ended up trying to work on what was causing the depressions (without success--each time they ultimately went away on their own). After I was dx'd in 01/07, one of my primary fears was that the dx (and prognosis) might lead me into another depression so I asked my onc to refer me to a therapist whom I've been seeing fairly regularly ever since--not so that I could go on drugs, but so that I could try to avoid doing so. Together, we began work on a list of depression "signs" that I could watch out for and use to try to help keep myself from walking down that path again. I have been very fortunate in that the "signs" haven't appeared so far (I've experienced almost no depression at all since my dx). I don't know that my "list" made any difference, but I do suspect that just the act of being "proactive" was helpful in staving off the blues. The main benefit I've gotten out of my post-dx therapeutic discussions/list has been the realization that depression not only decreases the quality of my life, but is also a waste of time I don't have. My main antidote has been to regularly remind myself how lucky I have been to get so many great "bonus" days in the past two years. Thanks again, Randy. Affectionately, Carole Life is not measured by the number of breaths we take, but by the moments that take our breath away.--George Carlin

Hi, Barb. Between you and Greg, I swear you're going to turn me into a raging (red) wino! Actually, this article does remind me that I haven't been drinking red wine with resveratrol in quite some time (last spring and summer I was drinking a glass with a couple caps almost every night). Maybe I can enlist the assistance of my cousin, who not only also happens to have the capacity to be a raging (red) wino, but is flying in next week. Clearly, I need to get back on track in terms of my health regime... can't be letting down the side! Affectionately, Carole One's destination is never a place, but a new way of seeing things.--Henry Miller

Hi, Marci. The adrenal glands produce cortisol, which is the "natural" version of Prednisone. The adrenals have a "thermostat" that tell them how much cortisol to produce and when (usually morning "bursts"). If we develop inflammations such as radiation pneumonitis (or arthritis, rheumatism, etc.), our adrenals may not be able to produce as much cortisol as is needed, thus we are prescribed Prednisone as a supplement (radiation pneumonitis requires large supplements compared to arthritis et al). When I first developed radiation pneumonitis (in May 2007), they prescribed 60 mg. daily (morning dose), then once I started doing better (within 2 weeks, I think), they began gradually reducing the dosage. I was never able to get off it completely (I made it down to 2.5 mg one time, then had to jump back up to 40 when I had a recurr\ence). Problems with the adrenal glands develop after long-term dosage of Prednisone. As noted above our adrenal "thermostat" checks each morning to see how much of a burst of cortisol that we need. Because we're on Prednisone, the "thermostat" decides we don't need any. After a while (in my case about 15-17 months), the adrenal glands can "forget" how to check for and produce cortisol so that we become totally dependent on Prednisone. Last October I was (as usual) trying to lower my Prednisone. Normally this would be fine as any extra that my body needed would be prodiuced by the adrenals in the form of cortisol. Unbeknownst to me, however, my adrenal thermostat had quit working and wasn't producing any cortisol at all, and I was taking too low a dosage of Prednisone as a result. The symptoms were excessive fatigue and lack of energy. Because I am on hospice, had ceased all treatments in June and knew that my cancer was progressing, I "assumed" that I was experiencing "cancer fatigue." Throughout the rest of October and most of November, I continued to "decline," and finally told my hospice nurse that my quality of life was so low that I was going to cease my "non-traditional" treatments (which included vitamin C by infusion, Vitamin D, other vitamins, herbs, minerals, etc., plus oxygenated water, electromagnetic therapy, acupuncture, massage, magnets, blah blah blah) so as not to drag it out. She asked me to hold off until my hospice doctor could discuss it with me. My hospice doctor came to the house, stayed about two hours, during which she asked me scores of diagnostic questions. When she was done, she told me there were four or five possible explanations besides cancer fatigue and number one on her list was the possibility that my adrenals had quit producing cortisol. She upped my Prednisone and told me I would know within 72 hours if that was it. I knew in 24 hours and was jumping around "happy dancing" within 48. Twice since then I have "forgotten" to take my Prednisone one morning, and in each case missing just one dose knocked me out for a good 5 days (I now have my entire health care team plus multiple family members and friends checking with me daily to make sure I've taken my Pred!) I don't have to tell you that my hospice doctor is MY HERO (this past Tuesday, instead of lying in bed dying, I was throwing an Inauguration Day Open House attended by over 60 people!). Sorry to go on in such detail, but you can imagine what a huge diffference it made to go from deathbed to dancing in less than a week! Anyway, I hope this helps and best wishes to your mom from me. With love and affection, Carole PS It's not that I expect to live forever... I am very realistic about my condition. It's just that if one has to die, much better to feel good during the interim than to be miserable instead. Life is not measured by the number of breaths we take, but by the moments that take our breath away.--George Carlin

Linda: We both know I don't even need to post here because we both already know what I'm going to say: TAKE THE DANG CRUISE!!!!!! A two week break isn't life or death (and even if it is, why not go out in a blaze of glory now rather than looking and feeling like a concentration camp victim months from now?) I actually believe that things like cruises IMPROVE our survival rates (Quality of Life!!!!) and credit my cruise last August with having at least some effect on my still being around (and looking at at yet another trip! ) It also sounds more like pneumonia or congestion than it does cancer so tell them to give you GIANT blasts of antibiotics in the meantime. When I took the cruise last August, my hospice doctor put a "care package" together for me with multiple prescriptions, each with accompanying directions that said "In case of (insert symptom) take (insert quantity) for (insert time period) x amount of days." I was fortunate in that I never had to get into it (I actually got healthier on the cruise), but it also meant I didn't have to depend on either the ship's doctor or whatever doctor saw me if I had to be medivaced (I basically became my doc's PA/RN for the duration of the trip). Some docs are so hidebound that they won't go along with a program such as above. If yours is like that, I'd recommend you temporarily replace him/her. Go for the gusto, Linda!! (Wish I was going with you, but working on Florida trip right now. ) Best wishes and with the greatest love and affection, Carole Life is not measured by the number of breaths we take, but by the moments that take our breath away.--George Carlin

I don't know what your stage is but this is no time to worry about taking pain drugs because of your AA status. What physicians know today (that they didn't know in the past) is that pain meds are not addictive unless the patient is taking more of the drug than is needed to handle the pain. In other words, as long as you are taking morphine for pain (vs. pleasure), you will not get hooked and end up having to fight the fight again. Right now, it is far more important that your body be getting full comfort care than it is to worry about an addiction that will not even happen unless you decide to turn your treatment into a "party time" experience (Part of surviving lung cancer is having "tude" and it's hard to have good "tude" when you're hurting so bad you can't think straight!). I would also suggest you discuss this with a mental health therapist who specializes in both drug addiction and chronic disease as s/he will have the scientific facts at hand as versus my talking out of the top of my hat without the research facts at my finger tips. Good luck! With love and affection, Carole Life is not measured by the number of breaths we take, but by the moments that take our breath away.--George Carlin

Ewing's sarcoma is a bone cancer. Hers has apparently metastasized to the liver (very common). The prognosis for metastasized Ewing's is not good; however, the younger and healthier the patient, the better the prognosis (they are better able to survive aggressive treatments). My girlfriend's son (age 24) is currently battling it with concurrent radiation and chemo in such strong doses that it would have killed me (and most of us) right out of the box, but because he was strong and healthy at time of dx (his is also metastasized to lungs), he has been able to make a comeback after each treatment. His job did not have insurance, but because he was immediately staged 4B and thus unable to work, he was eligible for medicaid immediately, which provides full coverage. He is being treated in Denver by Ewings' specialists despite being on Medicaid and so far the treatment program seems excellent and he's hanging in there. He has a very strong will in terms of fighting this and so despite the poor prognosis statstically, we all have high hopes (if it's kicked, it tends not to come back--unlike lung and many other cancers). To learn more about this particular cancer, I recommend you go to the federal www.cancer.gov website and enter Ewing and Sarcoma as search words to learn more about it. Hope this helps, Carole Life is not measured by the number of breaths we take, but by the moments that take our breath away.--George Carlin

Most of us are not lucky enough to qualify for surgery (lung cancer is rarely diagnosed in early stages), but chemo and radiation are always still on the books so please don't treat the inability to have surgery as the end of hope. What a wonderful gift you have given your mother... to see her grandchild during this time--to actually be able to hold him in her arms--may well be the best treatment she will ever get. Your number one priority, however, has to be to take care of yourself (if you're not okay, then neither your child nor mother can be okay). With love and affection, Carole Life is not measured by the number of breaths we take, but by the moments that take our breath away.--George Carlin

I would definitely push for the talcum powder procedure. Several recent "legitimate" research studies have shown that use of this procedure for pleural effusion has also had positive effects on curtailing growth/spread of existing and new lung tumors. Best of luck With love and affection, Carole Life is not measured by the number of breaths we take, but by the moments that take our breath away.--George Carlin

I, too, developed radiation pneumonnitis and have been on Prednisone (constantly changing doses) since 05/07. I have a "love/hate" relationship with Prednisone due to its many severe side effects, but it it also the primary reason I'm still alive thus "love" wins out in the long run. It is important, however, that you read up on the many Prednisone side effects and stay abreast of them so that you can make decisions (some in advance of symptoms) as to treatment for its side effects. If you read "my story" (link blelow), you may get depressed over my many prednisone-nduced trials and tributlations, but it will also provide clues as to what you want to look for and how they can be combated. My latest Prednisone nightmare (not yet updated in "My Story") is that after a year and a half, my adrenal glands finally quit working so I am now permanently Prednisone-dependent. I continue to look at positive side though, and that is that because of Prednisone I am alive. When measuring that against side effects, clearly the Prednisone wins! Best of luck to you all. With love and affection, Carole PS My radiation pneumonitis was not due to chemos: 15% of all lung cancer patients who undergo radiation therapy develop radiation pneumonitis. I was just among the "lucky" 15% is all. Life is not measured by the number of breaths we take, but by the moments that take our breath away.--George Carlin

Congratulations, Colleen!! I'm doing the Happy Dance here in Boulder (me, Mick and David Bowie are dancing in the street)! While I believe my various remedies (especially more recent Vitamin C infusions and Vitamin D oral supplements) have greatly succeeded in my continued pain-free survival I(i.e., slowed progression to a crawl), I am also convinced that "tude can't be ignored, and you definitely have 'tude! With love and affection, Carole (another "bounce back kid") Life is not measured by the number of breaths we take, but by the moments that take our breath away.--George Carlin

My understanding is that radiation treatments are most common response, but that these are provided to reduce pain as vs. being an actual treatment. I, too, am curious as to responses you get to this question as I'm currently experiencing minor, intermittant back pain that may be bone mets, but is equally likely to be stress fractures from Prednisone-induced osteoporosis (doctors are "monitoring"). Best wishes to you--as always. With love and affection, Carole Life is not measured by the number of breaths we take, but by the moments that take our breath away.--George Carlin

Congratulations! With love and affection, Carole Life is not measured by the number of breaths we take, but by the moments that take our breath away.--George Carlin

Belated but heartfelt congratulations! With love and affection, Carole

Congratulations, Joe, to you and your entire family. I have to confess that I find even the thought of triplets exhaiusting, but since I also believe that 'tude is everything, I cannot imagine the ripples from these beautiful three new pebbles resulting in anything other than an enormous increase in "positive vibes." Best wishes to all. With love and affection, Carole Life is not measured by the number of breaths we take, but by the moments that take our breath away.--George Carlin

Hi, all. Just a quick note to let you all know that I've been offline for a couple weeks due to "ups and downs" that ultimately became all "ups" (thus posting under "Good News"). First of all, I developed some kind of infection last week, source unknown but probably respiratory since my supplemental O2 needs rose sharply as did my coughing (which became "wet" as vs. usual "dry"). Blood work also showed that platelet count had risen despite my being on blood thinners (Lovenox and Prednisone). On Monday, while at clinic preparing to have bi-weekly Vitamin C infusion, I suffered a small stroke (ultimately deemed a TIA--despite it lasting over 1-1/2 hours--due to speedy recovery (most symptoms gone within 1-1/2 hours). Fortunately, because I was at clinic at the time, I was given enough data to make informed decision as to whether to go to local ER. I was told that ER would not provide treatment (there was none) but would simply "monitor" progresss of stroke, so I opted to stay where I was and go ahead and have my Vit C infusion instead (couldn't hurt and might even help). My symptoms began with slurred voice, followed by enlarged pupil, inability to comprehend what was being said to me, walking like a drunken sailor and cessation of air flow in my two lower lobes. O2 needs rose from 1-1/2 supplemental to 4 liters. At end of 1-1/2 hours, however, the only symptom left was slightly (instead of fully) enlarged pupil. I later questioned how I could have TIA when on blood thiners, and doc told me I was lucky I was on thinners. If I hadn't been, instead of a TIA it would probably have been a full blown stroke and might even haven taken me out on the spot. I, of course, knew that I had to recover--and quickly-- since that was Monday and the following day I had an all day Inauguration Day Open House party scheduled and if I didn't make it, it would have ruined my cake (whose wording was: "Change is Here and So Am I!" ) By the next morning, my single remaining symptom was a very slightly enlarged pupil (and it was back to normal by Noon) so all I need to do now is hope that I don't have a recurrrence during next week (if I don't, it cuts down the odds of future recurrences). If any of you have had this and have input/information to add, I'd certainly appreciate your sharing it (for example, will I still be able to fly, despite cabin pressure, given that right now Florida, Carib and Mexico beaches are looking nice and warm and toasty compared to Colorado ) In the meantime, over 60 showed up at my open house (which lasted from 9:30 a.m. to 10:30 p.m.so yesterday (Wednesday) I spent the day being lazy. Today I'll have a lazy morning, then off for the second of my bi-weekly Vit C infusions. I am now on a week's regiment of augmentin/amoxicillin (for infection) and wearing anti-coagulation stockings (to reduce posssibility of future TIAs), but continue to be pain-free (although swigging more cough remedies than usual). Ergo, I'm still lucky, still opting for Quality of Life and now have new short term goal of surviving to see my grandson become a teenager on February 20! With Love and Affection, Carole "the Bounce Back Kid" Life is not measured by the number of breaths we take, but by the moments that take our breath away.--George Carlin

Jude: Don was an amazing man. He was one of the first to reach out to me after my first postings here, on another message board and to the NSCLC list. We corresponded both publicly and privately and it is impossible for me to articulate what a comfort he was to me--both because of the knowledge he provided and the tremendous warmth and inspiration. I am so sorry for your loss--and ours-- but how wonderful it must have been to have him for the 35 years you were married. His love for his family shone brightly at all times--as is so very clear from all his postings here (which will, fortunately, be viewable to all of you, especially his grandchildren, in years to come). You were blessed as were we, and I thank you for sharing him with us. I will never forget him. With great love and affection, Carole Life is not measured by the number of breaths we take, but by the moments that take our breath away.--George Carlin