rocknrollpaddy

Hang in there Rich. You are in the middle of the toughest battle of your life. I'm going through a toughtime myself, as the chemos that I have been on, alimta and navelbine, have not been working. I'll be praying for you. -Brian

Just wondering if anyone has found a way to deal w/ a really bad, constant, dry cough. My doc has had me on cough syrup w/ codeine (no good: knocks me out; causes constipation); tessalon pearls (ineffective); Advair inhaler (ineffective). The only thing that gives me any relief is Ricola cough drops. My doc wrote me a scrip for oxycodone but I'm reluctant to fill it for a lot of reasons. Anything working for anybody?

Ann, excellent post! I thank God that I am fortunate enough to have had all my medical bills paid so far at Mass General, (that's me knocking on my head) and I have not gotten any huge drug bills yet. But part of me will always rankle that I should have to be greatful to have something which should be a human right: quality health care.

Well written, thought provoking article. I guess I just can't get my brain around the concept of the USA, my country, the richest country in the world, not being able to "afford" to take care of sick people. If we eliminated insurance companies (and their overhead, advertising and CEO's ridiculous bonuses) and went with a single payer system that most of the industrialized world has had for 50 years, we would actually be spending money to take care of sick people. What a novel idea! I guess I always subscribed to the notion that how a society treats its most vulnerable, its sick, its hungry, its poor, really shows what that society is really made of. Its physically revolting to know that right now there are people choosing between medecine and food while pharmaceutical companies and insurance companies are making billions. Thats my 2 cents.

It sounds like you made the decision to cease treatment together. The cancer can't take away the love and respect you have for one another. I know the helplessness that comes from a stage 4 dx and having to hear over and over from the onc, "Your tumors have grown..." So I know making the difficult decision you have made is a way to assert some measure of control over your own lives. I have a lot of respect for you in making what is undoubtedly the most difficult decision of your lives.

I recvd good news today. My PET scan of 2 days ago shows no tumor growth. I feel like a new man! The pain around my heart has gone away, as has the pain on the right side of my chest, which was likely related to the tumors there. My appetite has retuned as well. I know nothing is permanent; I am enjoying now, now. I did a bit of celebrating this afternoon w/ my brother Mike at the Kinsale in Boston, upon receiving the good news. I am back at MGH now awaiting my infusion. I can't thank everyone enough who wrote me here in this forum. Men, women, older, younger. It makes no difference. The unqualified support that I recvd here really helped get me though the last couple of weeks. Sometimes my friends and family just don't know what its like or I don't feel totally comfortable dumping everything on them. I came across a bit of Samuel Beckett's "Worstword Ho" the other day. It struck a chord for me. I think it speaks to the futility of out struggle w/ LC. But that doesn't change the fact that we still have to get up after falling. "Ever tried. Ever failed. No matter. Try again. Fail again. Fail better."

Calintay, Anything that we as a society comprised of people that love and care about our kids can do to counteract the insidious corporate manipulation of our kids is a good thing. My kids are exposed to a glamorous image of smoking in all sorts of pg and pg-13 movies. Ever see John Travolta not smoke in a movie? The days of Camel Joe and the Marlboro Man are thankfully over, but Madison Ave.'s reach is a long one. Lets agree that counteracting that with education is a good thing. I will say that I think that you do have every right to be upset due to the school's lack of communication with you, the parent, about the subjects being taught. They should have alerted you to the classroom unit on smoking so that you could dovetail it with at-home lessons on the evils of smoking. That would have made for a potent right/left combo. Brian

Thank you for the responses. It seems like there are a lot of strong, smart people out there who have figured out a way to fight and go on living. I am blown away that so many of you seem to have hit that sweet spot between acceptance and combat. You guys really seem to have your acts together! I am still feeling a lot of anger and well to be honest, a lot of rage towards the cancer. I am an argumentative, pugnacious person you might say by nature, but I feel like I am going into the boxing ring with both arms tied behind my back. My body is failing me and it is really hard to accept. I haven't had the ability or desire to go to the gym because of the fluid and pain around my heart. Lifting weights was always a good release, a way to take out my anger and frustration at the cancer. Now I feel like a professional patient, like I am more of a liability than an asset around the house and with the family. I can't stand to have the kids see me in a weakened condition. Going to work has kept me sane, but now I have a constant cough and am thinking of going out on disability. I had wanted to take the kids to Ireland this summer but I can't because I have to be at MGH every week for the clinical trial. I know there are a lot of ups and downs w/ this process, but it really feels like I am at a crossroads. It seems like once the tarceva stopped working 4 mos ago, the folks at MGH kinda wrote me off. I suppose its human nature: they want to focus on the patients w/ the best chance at a favorable outcome. I guess I'd be interested in hearing about how others have dealt w/ the anger and fostered and encouraged the acceptance part. Also, beacuse I have always worked, I'd like to know what others who are not working, what do you guys do? I have always wanted to write, but am worried about my mental state if its just me and the dog all day every day. Thanks for reading, Brian

Thank you for the kind words and prayers. Ned, I used to feel that aloha spirit when I used to play rugby w/ some guys from Fiji and Tonga. Toughest players I've ever seen. But at the post-match drinkups, you could tell after about 2 seconds of talking w/ them that they were some of the kindest, most generous and laid back people you'd ever want to meet. Judy in Key West and Ned, I know living near the beach has helped me on a lot of down days. I'll take Murphy, our chocolate lab, for walks at an old Civil War era fort that guards the entrance to New Bedford Harbor, and we'll walk as we watch the fishing boats come in and out, keeping our eyes peeled for the odd seal. In the winter I take him and the kids down to a beach w/ some real nice surf, and no matter how cold, he'll dive in after a tennis ball or whatever stray plastic bottles that have washed up. I love the beach in all seasons. In the winter, the kids will recycle the junk that has washed up on the beach and make sculptures out of it, or just spend hours building w/ the sand. Future architects. Donna and Kasey thank you for your thoughtful replies. Since Feb '09 my scans have been shown enlargement and spreading of the tumors in the lungs. I used to be in private practice, as a criminal defense attorney, murders, drug traffickers, you name it. Then when I got diagnosed, MGH did a pretty big surgery on my lungs, using talc to try to get the lung to adhere to the chest wall and they cut a window in the membrane around the heart, to allow the fluid that had accumulated there to drain. I couldn't function as a sole practitioner, running my own business, chasing clients, going to Court every day, yelling at cops, Judges. So I joined the "enemy" taking a job at the DA's Office, where I had started as a young lawyer years ago, right out of law school. Full circle as they say. It is a fraction of the money I made, and I miss the action of the courtroom, and people depending on me, but the people I work with are really fantastic: experienced, dedicated, some great lawyers. Thanks again for reading. I know I enjoy reading the other entries. It really is very helpful for me. -Brian

Diagnosed in '08 at age 42. Stage 4. Mets to lymph/bones. Did chemo, avastin and tarceva. Now enrolled in clinical trial at Mass. General Hosp. in Boston: w/ tarceva 150 mg and weekly infusion of R1507. I am a prosecutor and work every day. I used to love the courtroom and trial work. Now......Feels like work. Hard to stay motivated to deal w/ all the mindless bs of bureaucratic life. Lots of fatigue. I have twin 11 y/o boys. I still haven't been able to fully deal w/ the prospect of not being around to watch them play lacrosse in high school, to teach them to drive, meet their prom dates etc. Used to play rugby. Used to go to the gym every day. Now I have fluid around the heart and pericarditis. Can't get a full breath. The cancer just slowly chips away at your quality of life and dignity. Be interested in hearing from others in their 30's or 40's.