Addie
-
Posts
1,616 -
Joined
-
Last visited
Content Type
Downloads
Store
Profiles
Forums
Gallery
Blogs
Events
Posts posted by Addie
-
-
So happy to hear that it's working already to rid your DH of the pain!!
I look forward to continued good news from your "camp", Peggy....and am so glad things look brighter for both of you!!
Hope you enjoy the weekend too...and that it's full of sunshine!
-
Jen...
I'm pretty new to all this and just finished my first cycle of chemo 2 weeks ago. I'm on carboplatin instead of cisplatin....a choice my onc made because I have a chronic kidney condition. He told me that cisplatin CAN be harder on the kidneys....and in my case, he opted not to use it.
Now...in the absence of an already existing kidney condition...I wouldn't be concerned with a regimen of cisplatin/VP-16 and my understanding is that it's been used for a while because it's effective! The carbo/VP-l6 is also effective for treatment of sclc and both regimens are even more effective when combined with radiation, according to what my onc believes.
Some of what you'll read on the internet is dated....old info...including the statistics on survival! I take all of that with a grain of salt. I'm much more inclined to listen to what the front-liners tell me....the doctors and nurses that deal with all of this daily! I use the internet info mostly to form my own questions....which I then take to my medical team.
My doctor gives me both decadron (steroids) and Zofran (anti-nausea) by IV before administering the chemo and I had not ONE MOMENT of nausea! To tell you the truth, an allergic reaction was my last worry in the face of possible nausea and hugging that ol' proverbial porcelain bowl!
Other than a little fatigue right around the days of chemo, I've really felt pretty darn good! Once radiation begins too...I'm anticipating more fatigue...but beyond that I'm just not going to pre-suppose too many side effects unless and until I am actually experiencing them.I'm finding, as I head off on this journey into the unknown, that THAT'S the part that is the most bothersome.....the unknown is what creates fear and stress for me. I'm doing my darndest NOT to let it get to me. I mentally try to be as prepared as I can...have good questions to ask and otherwise table any worries till such time as I actually EXPERIENCE a side effect....IF I actually do! I mean why worry about "what might happen"? Think of the possibilities, ask questions, be prepared for the contingencies and aware of how your body feels and any changes in that....yes. But worry, stew, fret and make myself crazy with worry? Why DO THAT to myself?
Getting the chemo was no problem. I took a book to read, a journal to write in, a bottle of water and a granola bar or two to snack on. It takes some time out of your day...but otherwise it wasn't a problem. Even if WE aren't too used to it all yet...the nurses are...and they are, for the most part, empathetic and warm and wonderful! I had anti-nausea meds to take at home, as needed or according to a schedule...as well as something to help me sleep, if needed. Beyond those three days of chemo....I didn't even need to take the meds and a Tylenol PM helps me sleep just fine, without needing anything stronger!
Take a few deep breaths, and as others will tell you....trying to image those cancer cells being destroyed by the chemo is a very positive thing to do. Just close your eyes and imagine it in any way that makes sense to you....but keeping such positive images and thoughts IS beneficial. Stress and worry are not good for the body!! Trying to stay relaxed and concentrating on the fact that you are doing something to fight this disease is far more helpful!
Whenever I have my little moments of fear or doubt....I reach out in any way I can to find someone or something to help me combat that fear. I have some great real life and cyber friends who help me stay positive, along with my hubby and two sons. Plus I've ordered a few good books to read about having cancer and how best to fight it!
And of course, reading about some of the success stories and survivorship here....is also a positive boost, along with all the helpful advice, info and support!
Try to remember too, that we are ALL unique and individual.....so someone else's experience won't be ours in EVERY aspect! Keeping this in mind...I try just try to pull as many positive or hopeful things as I can from the experience of others....while not presuming the negatives...if that makes sense.
Sorry to be so long winded....but just a couple of weeks ago I was where YOU are...taking the first major step in this journey, so I can identify a lot with your feelings. Take it from me...at this point, there has been nothing to fear!! I feel I'm in good hands with my medical team...and my doc TOLD me I'd not get sick from the chemo and he was right!!
Trust in your medical team...ask good questions...and try to relax a bit. The road ahead is long....with several cycles of chemo. Set the fears aside if you can...and just make sure you've got some good books to read or some t.v. shows you want to catch up on during this time
Good luck and remember we're here to answer questions too...whenever you have them.[/i]
-
Oh, Shelly...my deepest sympathy for the loss of your father.
I did a search to see if there was a recent post from you...as I've been worried. I must admit.....this is my first time in this forum. I hadn't yet found the courage to visit here...but your lack of posts elsewhere worried me.
Please know I've been thinking of you. I am so sorry for all you've been through....but you needn't feel like you've lost against the cancer....because love always triumphs and you clearly loved your parents and they surely knew it!
Hold on to the good memories....because in time, they very much obscure the struggles, the pain, the difficulties involved in losing a loved one. In time....the good memories triumph too!
Sending a prayer for you for healing this terrible loss and for comfort. I'm so sorry, honey.
-
One thing that complicates things for me is that I moved just prior to DX, leaving behind a set of freinds etc that I had had for the past five years. I have not built a life where I am now. Where I live now is all about cancer, unfortunately.
All by itself, moving is a sort of grief process in that we leave our support system behind and have to build a new one in our new place. Certainly, we continue relationships that we've left behind...but it takes a while to build up new day-to-day relationships, new friendships with people that are right there.
I admire your honesty in putting out the thoughts you did in this post....and I think it's caused a lot of us to think more deeply about how cancer affects us....not just physically, but also very much so mentally and emotionally. Part of living with cancer AND the healing process...is addressing all aspects of how cancer affects us. And sometimes...it's just not all that easy to figure out....but putting the confusion out there, at the very least, allows us to share it and learn how others deal with it.
Any burden feels a little lighter when we know others share in it with us.
-
One thing that complicates things for me is that I moved just prior to DX, leaving behind a set of freinds etc that I had had for the past five years. I have not built a life where I am now. Where I live now is all about cancer, unfortunately.
All by itself, moving is a sort of grief process in that we leave our support system behind and have to build a new one in our new place. Certainly, we continue relationships that we've left behind...but it takes a while to build up new day-to-day relationships, new friendships with people that are right there.
I admire your honesty in putting out the thoughts you did in this post....and I think it's caused a lot of us to think more deeply about how cancer affects us....not just physically, but also very much so mentally and emotionally. Part of living with cancer AND the healing process...is addressing all aspects of how cancer affects us. And sometimes...it's just not all that easy to figure out....but putting the confusion out there, at the very least, allows us to share it and learn how others deal with it.
Any burden feels a little lighter when we know others share in it with us.
-
Mo...you were one of the first people I could tell was a real presence here....and someone everyone adores! Please know my prayers are added to everyone else's....that you can overcome this and that treatment is available to help you even if it's not chemo.
Keeping you and your family in my warmest thoughts and praying for a turn for the better.
-
Kelly, I wasn't yet a member when you went missing due to your father's decline....but please accept my sincere sympathies on such a difficult loss.
The tribute and celebration of your dad's life sounds as though it was meaningful for your family and I'm sure your dad was there, watching it all approvingly.
I hope that time and all the wonderful memories you have will bring comfort.
Again...I'm so sorry.
-
Prayers for you and for your doctors, Fay.
-
-
It was just a month ago today that I got the dx. A couple of very close friends already knew the likelihood of a cancer dx, as she is a nurse and I needed to pick her brain. But based on what my internist had told me, we sort of expected it to be lymphoma....not lung cancer.
Once we got the actual dx....there were those people I knew would probably think I'd done this to myself by smoking....as well as some who would take in the news as if it was all about them. In other words, "Omigod....she has cancer....I can't believe this is happening TO ME!!!"
Initially, I just couldn't deal with any of that...so chose not to tell anyone but those I KNEW could and would offer support without judgment OR by imposing their emotions on things. Of course I told my hubby, kids and my best friend right away. Later, I sort of hand picked the people I was okay with telling. There are still some we've not told who don't live in this area.
And I also knew just exactly who would spread the word locally, once we did sort of let it out.....or I thought I did. I ended up telling someone who kept asking if I was okay, because the incision from my biopsy didn't escape her attention. (It sure seemed to escape the attention of a lot of other people, though...even though it was red and still healing, right at the base of my neck. It was and still is highly visible!!)
When I told this person, I did NOT specifically ask her not to say anything....but I DID say, "Very few people know about this". Well...she chose to tell the ONE person who's husband is like the town crier at our golf club. This guy LOVES to have this kind of news so he can tell everyone who doesn't know. I think it makes him feel important somehow, to spread around news (or gossip) that nobody else seems to know.
And of course, next thing I know...the word is I have throat cancer, so this guy doesn't always get his facts straight either....but it doesn't keep him from talking!!! And you know...by now, I really don't care who knows. I've gotten my own emotional foothold and am prepared to NOT to take in whatever will impact my sense of stability (much as it's possible to have that, this early after a cancer dx!) But what gets my goat is that this guy who took such pleasure in spreading the word has not acknowledged the cancer to either my husband or me!! He's simply not said one dang word.....other than to say hello in passing and pretend that he HASN'T been spreading the word to anyone who will listen!
People can be odd sometimes. I mean, I understand that for some...they simply don't know WHAT to say....so they say nothing or very little and look at you with sadness, or give you a hug. Others think they have to just say how sorry they are....and while I appreciate the sentiment, the sorrow of others does me no good. I have no energy to deal with the sorrow of others right now, because I need my energy to focus on the fight ahead...the fight to get well. The truth is, they can save their sorrow for when I'm someday GONE or near the end. As long as I'm still here....then simply wish me well....wish me the good fight....send me POSITIVE thoughts and energy and table the sorrow for when it might be more appropriate, you know?
That's how I feel about it, anyway. And I still say, if all this is such great fodder for the gossip mill....then the guy who is spreading the word could also say something to me or my hubby. It's pretty hard to use the excuse of not knowing WHAT to say...when he's surely not having any trouble saying what he knows to other people, eh?
More important than that, though.....is that aside from people in my real life....I have a solid group of internet buddies that I "met" thru a now-defunct message board. We've all stayed in touch. There are 14 women....all strong, wise and wonderful women....who know about my cancer and who have become my cyber-support "team". We do group emails....they are enormously supportive and positive, caring and giving....and I feel SO terribly blessed to have them in my corner. They are keeping me grounded and focused and when I stumble or falter or get scared....they are my flashlight in the dark! They are my Hard Hatters.....the hard hat being my mental symbol for this fight.
They are incredible, loving women and I just know in my heart, that they will be like a secret weapon for me in the battle ahead! A willing source of strength for me to draw from. How lucky can you get, huh?I don't guess there is any right or wrong in telling people or not telling people. It's all about comfort level AND one's emotional needs. I know my hubby told people without my knowing, rather early on. He had his own emotional needs in this, too....so I had no problem with who he felt comfortable in sharing this news. He has the right too, I think....to select those who he knows will support HIM thru all this and it may not be the same people from whom I seek support, you know?
I also know that he asked those he told to keep it confidential...and I'm very assured that they did....until the word otherwise got out.
Anyway....nobody asked us if we wanted cancer in the first place....so whether or not we choose to share the fact that we have it, isn't something that anyone else has a right to question! The notion of feeling like some sort of freak over ANY illness....well, that just shouldn't EVER happen.
So much personal privacy goes by the wayside when one fights a serious illness....that whatever degree of privacy we CAN or NEED to maintain for ourselves....is our right, not just our privelege. That's how I see it. We know, with something like cancer, that we're going to get poked, prodded, stuck, viewed, scanned, xrayed and investigated in ways that will make us feel totally exposed and vulnerable.
In the face of all that....maintaining a little privacy and dignity can become so important, can't it? To each his own, I say. We each have the right to take care of our needs in this matter...in our own way.
-
It's good to know what accounts for the pain and the new drug sounds promising for you! Keeping a prayer that you continue to do well and that the new drug works well!
-
Good to "hear your voice", Nancy!!
I wish you were doing better in the "what goes in" department...as that would surely also take care of the "must come out" part, too! Hope you can find something that will stay down. Have you tried shakes or pudding?
You've sure got the prayers continuing....and I hope you keep gaining on it all...and start feeling better real soon. Keep us posted as you're able.
-
Much as this whole article made me sort of shiver uncomfortably.....when I got to this:
Susan L. Kelley, Bayer's vice president for product development in oncology, says pharmaceutical companies are trying to do the right thing. She says there are no options for kidney-cancer patients against which to compare the new drug. And, Dr. Kelley says, the company cannot allow patients on placebo whose tumors grow to then receive the drug, because "it would confound our ability to follow survival. We need definitive evidence that the drug is active."....I about blew a gasket.
God forbid that anyone with a spreading cancer should "confound (their) ability to follow survival"....when, in fact, those on the placebo may NOT survive!I wonder how Bayer would feel if this study were done ONLY on relatives of Bayer employees? Would THAT make a difference in terms of their apparent INDIFFERENCE about who survives or who messes up their ability to track survival?
They need "definitive evidence" while the cancer patient has needs that are, apparently, not as important as the drug company's, I guess.
D*mn......I gotta reread and think about this some more, but this irks me. This irks me a lot that the lives of desperate people matter less to some of these drug companies than their blinkin' statistics or capacity for making as much money as possible.
And while I'm at it...in a related irritation....some newsman was interviewing a mucky muck with the drug co. that makes Iressa yesterday....making comparisons with Tarceva and whether or not Tarceva will eventually cut into Iressa's market. I got so angry, as the questions the news guy was asking ALL sort of related to finance and profits....and NOT to the fact that both these drugs may extend or save lives.
I mean, let's talk about what really matters here, buddy...and it AIN'T some pharmaceutical company's profits. It's the potential for prolonging or saving lives!!!!!!!!!
Sheesh....some people just don't get it, do they?
-
Thanks, Fay!
Boy, it's got to feel better to be home, Nancy....and my thoughts and prayers continue for you. Wishing you a speedy recovery.
-
Oh, Jane.....
How I wish this wasn't happening. My thoughts and prayers will be with you and with Alan. Know that when you most feel you need it....we are all there with you, helping to hold you up and give you the strength you need.
Prayers will continue for you both....
-
Peggy....all I could find (and I remember the post you mention too) is this from Phyllis:
http://www.lchelp.com/community/viewtop ... highlight=
Is that the thread you meant? I too, only recall the ACS being mentioned...and a local church....but surely Makwa's doctors ought to have some resources they can refer her to as well....wouldn't you think?
-
Who couldn't hear such a testament to hope, without smiling and cheering! Thank you for posting this message. It gives hope to all of us.
Congratulations on such a milestone....and I like the positive way you think. Here's to many, many more years of survival and cure! I pray that someday, your success is everyone's who will fight this disease!
-
Adding my two thumbs up for such terrific news. Hope you really enjoy that vacation together!!!
-
I just found this too....and am new here....but always enjoy being able to reply to such good news!! I hope you and NED will be hanging out together for a long, long time. Congrats on such wonderful news!!
Your homesite looks wonderful! We too, are in process of building our dream home....out in the southwest! Might have to delay our move due to my treatments....but hey, it'll just be a bit of a detour to our plans.
Enjoy the building process. Seems it's never without some delays and headaches, but still a thoroughly exciting adventure!
-
CT results
in HOPE
Such good news is always great to hear! Hope the good news continues with his other tests!
-
Wow....I missed this too....but what terrific news! The waiting is so hard, but to be "rewarded" with such a good report has got to feel wonderful!
Keep it up!! We're cheerin' you on here!
-
Sometimes it's a wee bit of help, just to be able to express how we feel and know that others understand. I hope that's the case for you....but it probably will not be quite enough to ease how you're feeling. I think Becky offers some smart advice.....to talk to your own doctor about the strain you are under and see if he might advise taking something to get you thru the worst times.
I am the patient....but I'm keenly aware of how this is SO much more difficult for my husband....who feels so helpless and out of control over the situation. He doesn't say too much....but once in a while the emotions overflow a bit and he'll wipe at his eyes. I encourage him to let those feelings out because I think it's just healthier than trying to stuff them or pretend they don't exist.
Another thing you might try....is to put your feelings down on paper....or in a document on the computer. Many years ago...I lost my father to a stroke just 8 days before I gave birth to my first child, Dad's first grandson. You can imagine the range of emotions at that time. I was so heartbroken that my son would never know my dad....and when my son was about 6 months old I sat down and wrote my dad a letter....as if he was just away on a business trip.
I told him all about the baby, all the things I knew he'd be interested in....and kept writing until I simply didn't need to say anymore. I think I actually stopped sort of in the middle of a sentence. But it was a very cathartic thing for me.....to put those feelings on paper. I felt somehow, as though Dad was really "reading" them....and it helped me to cope.
Maybe putting your feelings down in writing....as though you were saying it all to your dad....would be a sort of release for you, as it was for me.
It's hard when there are things to celebrate and enjoy in other areas of your life....and yet there is always that lingering sadness over your Dad's health and situation. I think many here understand that all too well. But your Dad would probably be one of the first people to tell you to enjoy those brighter moments....like your daughter's graduation.....and to revel in it fully!
It's never easy watching someone we love struggle, suffer, lose any of the quality of their life....or to deteriorate in any way. It's painful and it just feels wrong.
But as long as there is life, there is hope....and each day with your dad is a treasure...a gift. Try to hold on to that thought to balance out your sadness and despair....ok?I will keep you and your family in my prayers.....praying too, that Dad will get some good news! Meanwhile, I do know he's very fortunate to have such a loving daughter!
-
Wow, Dave...this sounds fascinating....and what an honor to be invited to participate! I didn't even realize WALC existed but plan to check into it. And it was interesting too, to hear you say the stigma is disappearing. Apparently that news hasn't quite caught up to New England yet....but perhaps soon.
When I think of how women mobilized to gain more attention AND more research monies for breast cancer.....well, there is no reason it can't be done again for lung cancer.....which of course will benefit ALL who have it....male and female. (And to set the record straight, I realize that many men also advocate/advocated for breast cancer research as well. My comments here are NOT for the purpose of implying that it was ONLY women who made a difference about breast cancer research and fund-raising!)
I agree too, that Sarah Brady being open about her experiences may well be an asset to the cause and get the word out there in more significant ways that l.c. deserves and needs more attention, more money for research, less stigma and blame.
Thanks for sharing your experience with us...I'll bet it really was a fascinating meeting.
P.S. Coming back to add a thought I forgot earlier. I cannot help but wonder if female hormones plays some major role in why more women are turning up with lung cancer? I know hormones are suspected in so many other ailments or conditions that often are more common in females....that one has to question the relationship between hormones and lung cancer as well. At least I question it!
-
Okay....I've gotta add my 2 cents here.
I'm a Trailblazer fan. Born and raised in Portland, Oregon....was there in 1977 when they won the whole works...and I'm a fan forever. That said, I don't really follow basketball...but, far as I'm concerned the Lakers and all their money have dominated for long enough. It's sorta like the Yankees in baseball...now that I live on the east coast.
You just get tired of one team dominating because it seems they always have the money to buy more talent.
So.....GO PISTONS!! I'm a big fan of the underdog anyway, in most things....and sometimes you just want to see the "little guy" come out on top over the "giant".....don't you?
I do!! I'm tossin' my hat in with all you Piston fans and cheerleaders and I think it just rocks that Detroit took it to the Lakers in the first game!!
Other than a little fatigue right around the days of chemo, I've really felt pretty darn good! Once radiation begins too...I'm anticipating more fatigue...but beyond that I'm just not going to pre-suppose too many side effects unless and until I am actually experiencing them.
God forbid that anyone with a spreading cancer should "confound (their) ability to follow survival"....when, in fact, those on the placebo may NOT survive!
It's all in how you look at it...
in MEMBER UPDATES
Posted
Dear Fay:
I think I'm trying to be YOU when I finish growing up!!
Seriously, your attitude really is an inspiration for how to live....with or without cancer. There is some wise adage about how, if we spend too much time living either in the past OR the future.....we miss the NOW....which is called "the present" because it IS a GIFT!!
I kind of butchered that quote...but I know you know exactly what I mean.
Sometimes what comes our way, appears,on the surface, to be negative or an obstacle of sorts. But that needn't mean it will "ruin" the rest of our days....including THIS one!!
Life, if one cares to look at it this way, is a series of challenges, tests, problems to solve, obstacles to overcome. The "trick" is in finding ways to laugh, enjoy and smile our way through it all....keeping in mind that this ain't no rehearsal...this is "the show"!
Having said this....I just reached up to scratch my head and guess what I came away with? A handful of hair!!!
In dog terms....I guess I'm starting to blow coat....ie: shed! 
This is the 16th day from the start of my first chemo...so I'm right about on time.
Okay...next challenge for me....getting everyone together who will be part of the the "Shearing of the Lamb" party we're going to have where everyone gets a turn at shaving my head and taking pictures!
Hey...if I gotta go bald, might as well make it a party, huh?
Thanks Fay....for reminding me to smile and be positive every day...no matter whether my hair is falling into my keyboard!!