recce101

It's working out okay. One of my wife's cousins flew in this morning from another island, her son (who works for the Univ. of Hawaii) took off from work to pick her up at the airport, and they both met us at the mortuary for the arrangements consultation. To say I was deeply touched by their thoughtfulness would be an understatement, but I shoudn't have been really surprised, because her family does stuff like that. It's part of the Oriental "collective" culture that permeates much of Hawaii, whereas I grew up with more of an "individual" mindset on the US mainland. I was able to come home after the meeting and crash with Rosie while the rest of them went out to lunch and shopping. See you after a nap. Ned

Yes, I remember, and I think most of us told you not to worry. Glad we were right! Ned

Ann, by now you're probably sorry you asked! Last Saturday evening we took my wife's 94-year-old mother (who's lived with us for 12-13 years) to the ER for fever. Admitted to the hospital for pneumonia and put on IV antibiotics and breathing mask. Stabilized and improved. Tuesday I drove to my oncology clinic for my regular chemo, then Wednesday MIL took a turn for the worse and passed away (probably cardiac arrest). Hauled myself up to that hospital to see how the wife was doing (calm but fragmented and very tired) and we eventually got home after nearby relatives stopped coming by the hospital room. Thursday was nonstop relatives/friends coming by the house, calling the home phone plus both cells, bringing more food than we could handle (a neighbor was willing to take some of it off our hands), all the supportive and much appreciated but sometimes over-the-top assistance people out here feel compelled to provide. Last night after the dust settled I scanned a bunch of old photos to make a display for the service, and later this morning we go to the mortuary to make arrangements. Today would typically be my max fatigue day in the chemo cycle, but I think I'll be okay, and I'm pretty sure the wife is feeling it more than I am. But thanks for asking, Ann! Ned

That's terrific, Barb — congratulations! Ned

I think it's fine, Mike. You'll be there to support the individuals more than the ACS, and you may be able to open some minds to the undeserved stigma associated with lung cancer. Aloha, Ned

Hi again, Brian: and 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

Here's another vote for posting the question on cancergrace.org. Be sure to include your dad's age and general physical condition and any other pertinent details you might have in your earlier messages (I didn't do a search for them). But from what you say in this message, I'd be very hesitant to go the surgery route anytime soon. Best wishes and Aloha, Ned

Obviously, that requires a photo! Got back from my chemo session a couple of hours ago, but probably won't be feeling much till tomorrow evening. Everybody in the family is rather tired — we took Lani's mother (94 and lives with us) to the ER Saturday night for high temp and weakness, was found to have pneumonia, was admitted and is now stable but not out of the woods. If I suddenly quit posting for a while that will most likely be the reason. Love those dolphins! Ned

There's an article written by one of our members (a patient) posted on cancergrace.org that discusses this and 3 other Zactima clinical trials: http://cancergrace.org/lung/2009/06/08/zactima-by-neil/ Ned

That's terrific, Linda — congratulations!! Ned

So true! Ned

Gabby — it's great hearing from you! And congratulations on the upcoming wedding. Actually, somebody told me once that "congratulations" is only for the guy, and to the bride one is supposed to say "best wishes" or something, but that never made a lot of sense to me and I say you both deserve congratulations. I wholeheartedly agree with your philosophy, but it would be nice if learning some of these lessons didn't come at such a price. Much Aloha, Ned

They don't get any better than that! Ned

That's terrific, Alisa! It's good news not just for you, but as Judy said, many others as well. Thanks and Aloha, Ned

Katy, that's terrific! And I'll bet you're a big part of Gene's more positive outlook. Aloha, Ned

Hey, Donny, good luck with the Carbo/Alimta. I started that combo in late April, and it seems to be working better than anything I've had recently. Last scan was stable, and side effects are very tolerable. A good bit of fatigue for a week or so, some edema (a stronger diuretic has helped), but that's about it. The whole story is in the link below. Aloha, Ned

I agree with all of the above regarding masks (no need) and hand washing, keeping sniffly kids and adults away, etc. (yes for sure). Another aspect of this is avoiding infection from everyday cuts and scrapes. Be very vigilant and never hesitate to contact the oncology staff about "little" things that you'd feel silly reporting to a doc under normal circumstances. During my first chemo regimen, when risk of infection was high, I was put on oral antibiotics on three separate occasions — once because of a broken blister on the foot, and twice because my port incision was healing poorly and becoming inflamed. Aloha, Ned

Hi, Joyce, I responded to your first post a few weeks ago. I'm glad you're finding this group to be helpful, and especially glad you're doing so well on treatment. You've developed an excellent chronological history of your cancer journey, and much of that would be handy to have in a "signature/profile" which automatically attaches to the bottom of every message you post. Here's how to do that: Click on Profile above, scroll down to the Signature block, enter/update (or copy-paste) your information, scroll down further, ensure Always attach my signature is marked Yes, and click Submit at the very bottom. Ned

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

Paul, I'm intensely saddened to read of Michael's passing. You've been a marvelous partner and advocate for him throughout this most trying period, and I wish you peace. Aloha, Ned

For those who missed the notice in another thread, Linda passed away on March 29. Here's her obituary: http://lungevity.org/l_community/viewto ... 681#387681 Aloha, Ned

I wouldn't necessarily think you'd been arrested. Most likely you'd be performing duty as a voluntary navigational assistant (VNA), aka back seat driver! If you saw ME in the back of a police car what would you think I had been arrested for?

Hi, KC. I'm sorry you're having to go through this again, and also that you're having trouble getting answers. I think the second part has as much to do with the hour as with the weekend, and the fact that few if any of us are qualified to discuss the appearance of a mass versus fluid on a scan. But I do have a suggestion which should get you an authoritative answer before the weekend is over: Please visit cancergrace.org (GRACE — Global Resource for Advancing Cancer Education). GRACE is led by Dr. Howard "Jack" West, a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions online. A lot of us are "dual citizens" and have the same usernames there as here. Aloha, Ned

Judy: Because of that one person's comment, I think your only choice is to keep the Key West part. Not that you'd be devoid of personality without it, but as a matter of principle! Ned from Planet Earth (except on certain Fridays)

Sandra, even the best can have one of those days, and for sure you're one of the best. Pushing a bunch of comfort your way. Aloha, Ned