17 mos. post diagnosis/Rookie in this forum

[rocknrollpaddy]

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.

[recce101]

Hi, welcome to the LCSC! I'm a bit outside of your age group, but we do have a number of members with teens and pre-teens who can identify directly with what you're saying. I can only imagine how I would have felt if my diagnosis had been at age 31 instead of 71.

At 17 months out from diagnosis, it sounds like you're doing quite well in spite of the cumulative fatigue and lack of stamina. How have your recent scans been looking? You're right that a life-threatening illness changes our outlook and greatly reduces our tolerance for pettiness and BS.

Best wishes and Aloha,

Ned

[jaminkw]

Hang in with us. The younger set will be along. The boards are a bit slow right now but always pick up again. Probably the end of the school year looming is keeping the people with kids busy.

I have a niece with breast cancer with 11-yr-old-triplets. I often say I don't know how you younger people do it. It's a battle with the beast for all of us but most times, if I feel too bad, I can just lay on the couch and wine and my husband will make me a cup of tea. Can't imagine trying to word and stay strong for kids and try to keep their life going as normal as possible.

Positive healing thoughts your way, Judy in Key West

[Donna G]

Welcome. Sorry to hear you are having to fight this beast. Mass Gen is a great place for treatment. I have not heard of the R1507 study.

Your boys are probably upset with all this too.

There are many young diagnosed, many have others in the family also. Connie B was diagnosed young and she is still a survivor hopefully she'll see this post and check in with you.

Please keep us posted on how you are doing.

As you see I was raised in Boston. I still have all my family ( except my husband) living in Mass.

Prayers going up for a great response in this study.

Donna G

[Kasey]

Welcome 'paddy'! You find yourself in the place many of us have been (and continue to be) too. Only those of us here can truly understand how priorities change after such a diagnosis. Good for you as you continue to work in spite of the challenges you face.

My niece is 42, dx 3+ years ago, with 3 young children being treated at Mass General for Stage 4 as well. She posts here from time to time. I see the struggle of trying to keep up with kids and making sure life is as normal as possible for them. Makes the journey all that more difficult. Many are here to support you and lift you up when you need it.

Kasey

[Connie B]

Welcome rocknrollpaddy, (what can we call you for short other then "rocknrollpaddy?)

Well, I'm not in the age bracket your requesting to talk to, but I was 43 when I was first dx.d with lung cancer stage IIIB and I don't know emotionally or physically if theres much of a difference if your 30, 40, 50, 60, or even 70 years of age when you hear those words "you have lung cancer." It's not what anyone of us wants to hear and it's not what anyone of us wants to go through. But I also can share with you that many of us DO live long and happy "new normal" lives after being dx.d with lung cancer. This IS doable, beatable, and treatable.

There are TON'S of ups and downs on this journey, and everyone here can and will guide you through the rough spots and help you up when your feeling down. This is a GREAT place for support and understanding and information. We've walked in your shoes and some of us still do, and we'll share our journey with you to make your life easier and give you comfort. It does get sucky at times, but it also gets good and uplifting too and we do laugh alot and we do care about eachother. Your not just a number here, we work hard to help people through this journey because we care. Because we're lung cancer survivors and lung cancer caregivers.

Take a minute and read over my story by clicking on the website below.

Sending you GOOD WISHES and POSITIVE VIBES from a FAR!

[rocknrollpaddy]

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

[LovesLife]

Hi RocknRollPaddy and welcome, although I am sorry that you have need to be here.

When I received my diagnosis (almost 3 years ago) my kids were 10 and 11. It certainly affects everyone in the family. My daughter had a great deal of difficulty being away from me (especially at night-constantly had need to sleep with me/near me in order to sleep). I did get a counsellor to help her as there were things she just talked to her about that she wouldn't discuss with me (her fears about death, etc). It was also helpful to keep the teachers in the loop so they could let us know if there were any changes in behavior.

After hearing those words "You have lung cancer" my perspective of what to gripe about has certainly changed since then. I was, until diagnosis, like everyone else - ignorant and unaware of how life can change in a heartbeat. I am still no saint-still lose my patience and still human, but I am more aware (if that makes any sense). I guess I have less empathy for the stupid arguments that people have - they seem pointless and sad all at the same time. I imagine you see that daily in your work!

I can't imagine how difficult it is to get through the work day when fatigue is such an issue. Is there any possibility of cutting back hours to a more manageable level for you? Or does work keep you sane?

I am so sorry that you and your family are having to go through this. We are here for you.

Linda

[jstdzy]

Sorry you have to be here, but glad you found us!

Dana

[Katy66]

Hi, glad you found this site. It has truly been an inspriation to me. My husband (53) is battling stage IV NSC and brain lesion. We are seeing some progress and the survivor stories certainly give me hope. We have a 6 year old daughter so I do understand the complications that having young children adds to dealing with the diagnosis but I also believe that gives you a little more reason to fight! I know that our daughter is the only one on my husband's bad days that can make him smile.... and why wouldn't you fight as long as you can to see that child grow up, graduate, get married....it is possible!

[Patti B]

Hi Brain-

Glad you found us altho I am sorry you found the need to. This site is full of really great people who understand exzactly what you are going through.

My son was 14 when I was diagnosed 2 1/2 years ago with Stage 4. They gave me 12 months tops and he was old enough that we were honest with him ---- didn't want him to be angry with my husband for lying. Now I am at 32 months and he will be 17 next month. In the beginning, it was awful; his grades went downhill, he got into a fight at school, our relationship was going straight down the toilet. But the things changed. I took him for counseling and that really helps. He is now my biggest advocate and he truly understands things that unfortunately my husband doesn't. My goal is to see him graduate from high school....thats a ways away but thats what I am shooting for.

I respect the fact that you still work full-time - WOW - there is no way I could do that. Altho I keep very busy....just raked out 440 lbs of topsoil and planted three large areas of grass and now am painting my bedroom...I can do that on MY schedule, not someone elses. But please remember to listen to your body - when you are tired, REST!!!

Am wishing and hoping you much success with the new drug you are taking - please keep us posted on how you are doing!!

Hugs - Patti B.

[SandraL]

Hey there. I am in my 40's and have young children, one of each, aged 13 and 14. They are definitely the hardest part of all this and are the reason I continue to fight each day. The best we can do is be there for them each and every day we are alive. The rest is in someone else's hands. It is so hard and really so unfair for young children to have to live through this battle. Feel free to PM me if you like. Take care and enjoy your kids the best you can.

Sandra

[fillise]

Hi Brian!

I'm glad you found us, although sorry you had to. This is a great and very supportive community. We will do our best to support you in your fight.

Susan

[rocknrollpaddy]

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

[Caren]

Hi Brian.

So sorry that you have had this diagnosis, but wanted you to know that you have come to a wonderful place for support and advice.

[RandyW]

Brian, I am on the other side of the fence. I am a caregiver survivor. so hard to be in your shoes. BUT!! Thank you for being in the trial!!! You are a Pioneer in cancer research and can be proud of that fact. you are a fighter and a winner!! You are living each day the way you have to.. BE proud of that. remember Beating this disease is about buying time. Each day is a step closer to finding a new treatment or Cure!!

[jaminkw]

Brian, I applaud you for doing the trial. I turned one down because I didn't want to do another year tethered to MD Anderson evey three weeks. I will travel with my husband when he works and also worry about just me alone in the motorcoach when he is at work. I recommend having on hand a variety of things I always wanted to do: my scraps of writing folders that I'll organize and could actually inspire me; a little crate with a carving or whittling project; receipts for our business that I can organize and input to the computer; and several books I haven't read. My theory is if you have enough stuff on hand, something is bound to appeal. When all else fails I can clean "house" or learn to cook in the convection oven. I also have a total gym in an under-coach storage bin and alternate work-outs with walking. Take a look at the gym online or on TV. It keeps you moving and is highly recommended for people with physical limitations since you never lift more than your own body weight.

Don't know about the anger and acceptance except to just keep going. I'm not always angry but don't think I'm even close to acceptance.

Judy in Key West

[Barb73]

Brian,

For what it is worth, I could not have said it better than Randy.

When he encouraged the trial, and he told you that this is about "buying time," he was giving you what it is all about for many of us.

Yesssss, that is exactly what it is.

When Bill was first diagnosed, and was told the regimen of concurrent radiation and chemo, he told me, "This is going to be a job."

Alright, he has done that, and for four plus years. Within the first year, he was diagnosed as Stage IIIB/IV. Yeah, but it was the Stage IV that we saw.

To be here each day, and to go through the treatments, and to be ready, willing and able, is the name of the game.

You sound like a fighter. Surely, you would give a court case a run for its money, why not this? Keep on with that mode.

Barbara

[ts]

Brian,

That's quite the history! I'm not in your shoes but reading through what you have been through and where you are, I'd be inclined to go on disability and spend time with your boys. I know kids are little germ factories, but if you can handle it, I am sure their school would love another adult in the classroom (well, they probably aren't in school over the summer.) Or, do what you can to make the most of your good days with them and take care of yourself as best you can.

I took most of the past 7 months off - slept, read, and not a lot more. For better or worse, my SO works from home, so I always had company if I needed some. Last year, I worked 60-80 hours a week. It wasn't hard to make the change to not working. Wish I had had the energy to do something enterprising or crafty or such, but it just wasn't necessary. I'm back at work now.

I wasn't terribly accepting of even stage IIIb. I read some buddhist works, some general living therapy type books, talked a lot with my SO and a few friends, including ones 1 and 2 years ahead of me in cancer world, and with my docs / PAs, and the good people here. All of it helped, but I was up and down all the time.

Be good to yourself and those you love.

Stephanie

[dadstimeon]

Welcome Brian,

Glad you found us. Who says you will not be here to see your boys grow up. I'm Stage IV and last month makes it seven years since diagnosed. Right now lung cancer is the least of my troubles, go figure. It's a new normal and yes takes time to get used to it. Everyone deals with this differently so keep that in mind. It's Lung Cancer 101. Take it one step/one day at a time. Focus on what you can do not what you can't do, keep busy as best you can. Focus on living/not dying. I'm also home all day by myself and two cats. I keep busy doing things around the house, yard and my workshop as best as I can. Do as much as I can with my wife and daughter. I have my (getting harder) days just like anyone else but still refuse to let lung cancer/my health get the best of me. Don't go it alone, join a support (if you are able to get out and about) group, helps to talk to people who have been there, done that. Below is a link for The Wellness Community, it is in Newton and they have a Lung Cancer Support Group. It's free and they also offer support for family members. I live just North of Boston if you need to talk to someone, feel free to PM me anytime. Hope this helps. Hang in there and keep us posted on how you are doing.

Rich

http://www.thewellnesscommunity.org

[Wendy]

Hi Brian,

Welcome! I am a 5+ year survivor that has been in treatment for close to 5 years now. I was 39 when I was diagnosed at stage IIIa. I had my left lung removed, radiation to my chest, 3 drug chemo cocktail, & participated in a drug trial with the drug IRESSA.

I was cancer free after my lung removal until 2 years later when 2 bone mets popped up. For the last 2 consecutive years I have had 1 bone met pop up. For the last 3+ years I have been taking Avastin and Tarceva. I just found out that the Avastin is starting to constrict the blood vessels in my brain and causing problems. I am sure I will be discussing the next treatment plan for me in the next few weeks with my doc.

I can relate to so many levels that you have discussed. I have really struggled with anger piece. I eventually saw a counselor to learn how to live with it. I can't say I never get angry about it anymore, but I can say that I have learned not to let it control my life. I can acknowledge the anger and then let it go and move on. Eventually I realized that it wastes way too much energy to be angry all of the time.

I am no longer working and have been on disability. I attempted to return to work about 3 months after my surgery (part time) and I couldn't keep up. I loved my job and to admit that I didn't have the energy, brainpower, or concentration was a really big blow. I had defined myself by my job and suddenly I was no longer that person. Looking back it was the best thing for me. I was able to keep myself healthy and able to concentrate on living life - no matter what was thrown at me. Believe me you can find things to do other than work!

Hang in there Brian. You are not alone. You can handle whatever has been thrown at you. You're a survivor.

All my best,

Wendy

[ursol]

Brian,

I'm sorry all this has happened to you. You have really been through alot. I am also Stage IV and am 43 years old with a 15 year old, 9 year old and three year old at home. I know it is not easy. I also work full time and am the primary financial resource for my family. My husband has been a great support and I'm at a good place now. In remission since September although I think it is back but won't know for sure until August when I get my Pet Scan. (I've had some familiar pain lately). I tend to live my life in monthly increments with big goals with bigger stretches. Right now, my goal is to make it to October 10th for my 25th High School class reunion. I'm on the committee so it is very important to me to be there. After that it will be something else I'm sure. Fight hard to stay alive and exercise whenever you can even though it is hard to breathe. I have fluid around my heart..it has been there for three years and it does make it difficult. (I hate stairs)...Anyhow...You are in my thoughts and prayers.

Lilly

[recce101]

Hi again, Brian:

I am blown away that so many of you seem to have hit that sweet spot between acceptance and combat...I am still feeling a lot of anger and well to be honest, a lot of rage towards the cancer.

and

Also, because 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 it's just me and the dog all day every day.

A year or so ago we had an interesting discussion on anger (some felt it, at least at first) and whether or not we saw ourselves in a "battle" or "fight" with cancer. Many did, but the person who started the thread was uncomfortable with the "fight" concept (I don't recall exactly why), and this was my input:

"I'm also a bit uneasy with the term, but for a different reason. It implies that we're fighting a foreign invader in the same way that we would attack a virus or bacterial infection. Many people find it helpful to think of cancer as an invader, but I don't. Cancer cells are my own cells that have been damaged in some way, possibly but not necessarily by a foreign substance, but which for some reason did not die along with the 50 billion other damaged or "used up" cells in my body that undergo programmed cell death (apoptosis) every day.

"While we may need some emergency assistance in the form of chemo or radiation to get control of the situation, the long-term solution is to strengthen the body's processes to the point where they can once again dispose of potentially cancerous cells as they're designed to do. A mind game? Maybe, but whatever mental energy I devote to the cancer issue I'd prefer to place on the positive, process-strengthening side, so I can put that part of my life back on autopilot."

On your second question, please consider the following idea as part of the solution. You may not be quite ready to take action on it yet, but on the other hand you may be, and I really believe it's why many of our most helpful members are so active on the site. I absolutely know it's true for me — while I've been a responsible and law-abiding citizen all my life, for most of my years I've been rather self-centered, not likely to go out of my way to be helpful, and not especially compassionate or empathetic. That started to change in the mid-1990s when I became afflicted with Meniere's Disease, a debilitating (but not life-threatening) inner ear condition that destroys the hearing in one or both ears and, even worse, causes sudden on-the-floor vertigo and nausea episodes with no warning whatsoever in the most inconvenient places. I had one in a nearby Wal-Mart, another in a big computer store, and one in the line at our local bank, in addition to several at my own printing business and many at home. I was grateful that this condition didn't set in until several years after I had completed a 30-year flying career, but it nevertheless required some major lifestyle adjustments. I joined an online support group and soon discovered that my condition, while horrendous in my view, was actually rather mild compared to some others in the group. I found that corresponding with them, especially those newly diagnosed with Meniere's, got me "out of myself" as I tried to explain the coping techniques and medications I had found most useful. Eventually I figured out what personal triggers to avoid and what medications to stay on to prevent the vertigo/nausea attacks, I became accustomed to having just one good ear, and I pretty much had my life back until the summer of 2006 when lung cancer entered the picture. One of the first things I did was Google "lung cancer support groups," and this site showed up on the first page. Two months later another marvelous site appeared, headed by a Seattle oncologist and lung cancer expert who gives high priority to promptly answering questions online. That's cancergrace.org and I'm quite active there too, helping myself by trying to help others.

Here's the idea in a nutshell. Find a person who is less fortunate than you, and help that person. Doesn't have to be face-to-face — telephone or the Web is fine. And doesn't have to be about cancer — maybe you could participate in, or start, a legal helpline in your community. But you get the idea. Works for me! Aloha,

Ned

[texasone]

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

[Bud Baker]

Welcome, Brian. Thanks for sharing with us. I am another early stage patient who has been NED for 18 months, so I haven't faced anything close to your challenges. I just wanted to send best wishes your way and welcome you to the forum.

You're right that a life-threatening illness changes our outlook and greatly reduces our tolerance for pettiness and BS.

Well said, Ned. I am really finding that to be true. All of the BS I used to be able to tolerate at work, I just can't stand any more. I've found myself trying to retire early (or at least semi-retire), get out of the rat race, and move to a small place in the country on some good cycling roads. Indeed, all this does seem to change our perspective.