spicysashimi

hi everyone, thank you for all the thoughts and prayers. the hospital was nuts. they had me on a bucketload of methadone which made me hallucinate and embarass myself. now i have these tremors which makes it difficult to type. i spend my waking hours on the sofa and rely on other people to prepare my food and medication. i am on 150ml of liquid methadone every 8 hours. i dunno if that's adding to the problem (fatigue, tremors, weakness), or if it helps. they are radiating my hip and neck area. my throat now is extra sensitive and it hurts to swallow. i'm scared. i'm afraid i'll never feel normal again. is this my new reality? it is so difficult, just to change my clothes. i feel like i'm deteriorating. hope you are all well. aaron

i thought it had to go on the left side because it goes into your vena cava vein (big ol vein). I guess i was wrong. just tell them your situation. good luck. aaron

Hi all, So.... I am on a weekly Taxol regimen. I have never felt like this before. My feet feel like numb stumps. And I can feel the neuropathy creep up my legs into my calves. similarly, my fingers are numb. and i can feel the neuropathy in has now crept in my forearms and upper arms. I know its been discused before, but i can't find it. are therere anysupplements that might help? aaron

Rich, Put your feet up and blow this infection out of the water. You're a trooper. aaron

Hey kids, Whole brain radiation, with a touch in the eyes - its a blast. A much needed respite from Taxol - although I found that drug very tolerable save for the awful late onset neuropathy which according to my pain doctor is crawling up my calves! How cool is that? aaron

Sorry I've been lax with posting and and all, but the wedding, before and after, has occupied all my free time. Thank you so much for all your congratulations and wishes of support. It feels good to know I have an LCHELP family looking out for me. I'm happy that I was able to share this moment with all of you. I'm glad you like the website. Feist, the artist singing, is becoming hugely popular, and rightfully so. she's fantastic. I'm feeling OK. The wedding really wore me out and I had to take a few days on our honeymoon to readjust. I got an annoying pain in my back and my eye is not any better. If those things were fixed, I'd be tip top. I hope all of you are well. aaron

the big day is 9/21, Friday night in the Bronx, New York at the New York Botanical Garden. You can find more information at our website: http://www.juliaandaaron.com cheers! aaron

Hey folks, Just thought I'd pass along my positive experience with lactulose, brand name - Enulose. It works quickly and effectively. I've been frustrated with my previous combo of Colace, Senna and Miralax. With the oxycodone I take and now the Navelbine, constipation has come to the fore. Sorry my only update in months has to be about poo. I've been ok. Up and down. Took a trip to Virginia to visit my dad and went fishing on his lake. I was looking for small mouth bass but could only reel in a large Crappie which I am told is not that good to eat. Julia and I are busy planning the wedding. I'm doing a lot of coordinating and tying ribbons on menus and things like that. She's stressin, so I am trying to help as much as I can. Just trying to keep the faith and keep my chin up. I think about all of you often. I hope everyone is well. aaron

Good luck Nina. Thinking about you. aaron

Well, I called the doc after the MRI for the results - he couldn't talk and told his secretary to tell me the MRI was "fine" and that we'll talk at our next appt. Now, my nurse relayed some more specific information: "there's no scary stuff, but the radiologist noted some minor vascular irregularities that should be examined on a follow-up exam." She didn't think there was much to that and I know, even before talking to my doc, he's going to make nothing of that. Just a little blip that most healthy people would have (or something similar) if they went for an mri. Anyway, no tumors in the noggin. I guess that's the important part. Now, what about the eye. It hasn't really improved. Doc wants to see results of my PET scan, which was taken late yesterday (Friday) before he refers me to eye doc., because, according to my nurse, if the PET shows the cancer is active, he is more likely to think the eye problem may be cancer related. Makes sense. Although, if the MRI is clear, how could new tumor development in my back or neck or chest interfere with my left eyeball? We'll talk about the PET results this Monday, when I am supposed to get treatment, which hopefully will continue, because this stuff is way tolerable. I'm with my dad on this one who thinks I might have an infection - resulting from my immuno-deprived position post-treatment. To support that contention, I've noticed that walking around outside, for example, with both eyes open, my left eye will tear up while my right eye will be fine. Similarly, I've felt "pressure," for lack of a better word in my left eye. All of this makes me think that this eye problem is more local than dispersed somewhere throughout my body. What I am hoping for: PET shows reduction or stability. I'm kind of worried because I had some burning in my chest last night and these past two weeks I have felt like sh*%, pain and low grade fevers. Then again, I've learned that pain is actually a bad indicator of regression/progression. I am also hoping that this eye thing is just a simple infection that may require some antibiotic eyedrops. Thanks for all of your concern. I'll update after Monday in the Test Time section. aaron

UPDATE: no word from doc on last Friday's MRI but I feel vision is worsening. Now sometimes I see a twinkling object in the upper sphere of vision. Damn. This is really annoying. I'm getting an eyepatch because it either mostly or entirely the left eye that's problematic. That'll be a nice look, just in time for my first trial. Hardy har har mateys!!!

Teri, Don't know what to say except that Bill was a pleasure to "meet" and I loved reading his posts. It was obvious that he was a passionate and unusual guy (unusual in a good way!). I'm saddened. I send you my condolences. aaron

Hi all, Once again I worry that the disease has crawled into my head. Most notably, I've had vision problems - blurring. I think its more in one eye than the other. The computer screen is hard to look at, for example. I've also felt like crap - but I did get treatment 5 days ago, so that may have something to do with it. I can't seem to get anything done or "get it together". I just keep waiting to improve but I'm afraid I'm not improving. I don't really have any headaches just the usual. This is really frustrating because I have to start a trial on monday (my first). Another thing to note is, since Monday, I've stopped taking Lyrica, a nerve drug known to cause vision problems and other things. I've also stopped taking steroids - I hate them. Anyway, Julia and I are really worried. If its the worst case scenario - how bad is it? Any success stories? thanks, aaron

My pain doctor put me on Lyrica in addition to the classic opiod-style pain relievers because they believe a lot of my pain is "nerve associated", and this stuff is supposed to help with nerve pain. I was taking one a day for about a week then they upped it to two a day. Then about a week later I noticed some vision problems and trouble concentrating. I stopped it altogether and now I am going for an MRI. Great. Has anyone taken this drug and experienced similar side effects? I hope its the drug and not some little bugger in my brain. I seem to be slowly getting better now that I am not taking it. aaron

when i got zometa alone for the first time I had a bad pain reaction during the infusion, but cooled off throughout the night - could have been the morphine they gave me. Definitely didn't last for days, but everyone is different. aaron

Here's what I asked Dr. West on his site: Dear Dr. West, One of my cancer docs (not my primary onc), asked if I ever thought about having my primary tumor removed - a 3 inch matzoh ball in my left lung. There are a few subcentimeter nodules in both lungs that have been dead since I started chemotherapy a year ago. Other than that, I have bone mets which are my major managing problem (pain). There are no known metastases outside of my bones. Occasionally, I'll also experience chest pain from the primary tumor. I know its unorthodox, except for maybe someone with solely brain mets, but I would like to have the primary tumor surgically removed. What do you think? On the plus side, I can minimize (hopefully) the chest pain I have from this swelling matzoh ball of a tumor. Also, won't removing it reduce my "overall tumor burden" - a goal of any oncologic therapy? Couldn't a lower tumor burden increase the effectiveness of my chemotherapy? Lastly, there's more "out there" theories about rate and control of metastases - maybe this Battleship is the primary met producer. I know cancer doesn't really work like that but I also know we know little about the science of metastases - and why sometimes mets reproduce fast or slow or tend to go here or go there. Of course, there's a piece of mind element that you can't deny - It would be nice to walk around everyday knowing I do not have a large cancerous golf ball just chilling in my left lung. I'm aware of the protocol and how you want to treat stage IV's systemically, but what about individualized treatment - isn't that the future? Don't we all have different cancers and different bodies? A generalized treatment plan wouldn't optimize survival for most of us - we need plans more tailored to the individual. As you may remember, I am 28 years old. I am a non-smoker. I feel well and consider myself relatively healthy. My biggest symptom or side effect from my disease/treatmnet is bone pain. I have no pulmonary symptoms. I am currently on a trial with Gemzar and Alimta which is "working". I bring this up because a doctor casually mentioned to me that they are removing primary tumors in metastatic breast cancer cases more and more often now. I know different cancers act differently, but within nsclc, different cancers act differently. If I got this sucker out, my treatment can focus solely on the spots in my bones which respond well to chemotherapy and hopefully may respond even better with the Matzoh Ball removed. I look forward to your response. a

So I was talking with one of my cancer doctors the other day, okay, my cancer psychologist, but he's pretty clinical. Anyway, he asked me if I ever gave any thought to removing the primary tumor from my lung. He mentioned how I was an atypical case and may require atypical methods, but he also said that he is seeing primary tumors removed despite metastatic disease more often in breast cancer patients. On the plus side, maybe I would cease to have chest pain - and pain is the name of the game at this point in my treatment. I am fairly certain I could handle the surgery. And wouldn't it just be better to have a lower tumor burden? I am always reading about how the smaller the tumor burden the more effective the treatment, etc. I know my primary onc won't go for it - so I'd have to find someone else, probably some kind of cowboy. I'd like the piece of mind too --- cut that sucker out. Let's just deal with the bones. What do you all think? aaron

Teri, If you're in a hospital, and it sounds like you are, they should have a "pain service" which is a group of doctor's and nurses who exclusively deal with patient's pain. There are a lot of options once you talk to them - things that enhance the pain meds, non-opiod meds, even surgery sometimes. If your hospital doesn't have one (which is doubtful these days), look online for a pain management doc or call your ins. company. This is where I go. http://www.mskcc.org/mskcc/html/474.cfm If he's in pain, keep hassling them: "that didn't work, this didn't work." Bill shouldn't have to put up with that. Good luck, aaron

thinking of you Rich. aaron

Hey Raney, When I progressed on Tarceva, it was strictly bones. Don't sweat it too hard, bone mets can just cause pain but you can live with them for a long time. They're manageable. Better in your bone than mets to a vital organ, in my opinion. But yeah, bones are where my cancer wants to go. Have you taken the drug, Zometa? its called a "biophosphate" and is supposed to strengthen bones for people with bone mets. all my best, aaron

Thanks everybody. Its nice to share my good news with my lchelp family. aaron

I got the word today via email from the secretary to the committee - the full committee on character and fitness for the 1st Department, Appellate Division has voted to admit me to the New York State Bar. Wow. Putting aside the *two year delay* I've waited since graduating law school, collecting paperwork and getting sick, I can't help but think back to when I was 17 and was being wrongly prosecuted. I made my decision to become a criminal defense lawyer from the bunk in my cell. That was 1996. Plenty of people told me I couldn't do it. My overzealous prosecutor was certain I wouldn't even be able to gain admission to law school after my conviction. I hate using myself as an example, but if a kid screws up, he may not have blown his chance to become a lawyer. I did it.

Teri and Bill, We are thinking about you. aaron

First I'd hit it with a spiked bat a few times. Then I'd tie the tumor up to four horses, drawn and quartered, old school. Then I'd spear what was left, light it on fire. I would then kill off any remaining cells with bleach, one by one, with something like Wagner playing loudly in the background.

Tracy, Hang in there. Denial to me always suggested that there was some kind of moral imperative that you must dwell on your own fate in order to be true to yourself. I don't agree with this. If you feel relatively good and able, you're living, and you shouldn't stop living just because of what might or probably will or definitely will happen. Leave that for the times you feel like crap - and we all know there will be those. I've been coming to understand that for everyone, all those schleps I see on the streets of New York, oblivious to our pain and our suffering. Even those people have health problems, some very serious. Life, for most of us, is a constant equilibrium between health and disease. Unfortunately, CANCER is such the grandma of disease taboos that its looming presence exerts that awful, depressive power over us, but often times without much teeth - although the fact that I have advanced stage IV lung cancer, this past week I felt almost 100% normal. My point is that that normalcy, even if its not 100% and run it as far as it could go. Lean on your friends, tell them you really want to have a blast and achieve a place where you can expertly balance the terror of cancer (much of which is historical and, I've found, so far to be rather toothless) and your health. You have great health as far as I know. You're able, you're walking around doing things. Don't start dwelling. Live, live, live, that's the cancer's worst enemy. Learn to live with a little nausea or some headaches. Learn to live with an incessant aching nodule in your back that can go from discomfort to yell out loud pain. Its a new reality and its tough and it sucks and you and your family don't deserve to have to go through with it. Just try to remember how far you've come and the times you exceeded your doctor's expectations and perhaps even your own. One last thing, about the family. Jules and I were at a family thing two weeks ago, specifically my big sister's wedding, which was pretty awesome. I, unfortunately, was less than a week out of chemotherapy and you know how that could be. We had to drive to Philly. And since my bro in law didn;t have any best man, not even a groomsman, I became the default problem solver/organizer/go to man for anything that went wrong. To top if off in the evening, I was volunteered to "take care of" the remaining liquor that we had bought. Case and cases of booze. Find a car (didn't have one), load it into car (pain from back metastases acting up) and drive it to hotel (no directions). I'm ususally not like this, especially at my sister's wedding, who I adore, but I couldn't help but scan around the room at all these other young men sipping their wine. "couldn't they have given this job to to the dude who hasn't had chemotherapy in the last week and is without cancer invading his backbones. I guess I looked so good, everyone thought I was fine. Tracy, you too, judging by your posts and your picture are a strong beautiful woman. People will think that you can do and deal with stuff like a normal person. Don't be afraid to lay it out for them, just those dark secret scary stuff that all of *us* have to confront regularly - just as a friendly reminder on how different we are. I'm not sure if this or any of these topics were relevant but at least know that I know how difficult it can be to deal with family who is not on the same page. Good luck Tracy