Addie
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Posts posted by Addie
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From all your posts, I have to say Alan is one lucky guy to have such a loving sister!
I send my prayers for Alan...and for you, who has given him so much love and care.
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Oh, Mom has my prayers for sure. God bless her...getting thru chemo at 82 years young....she has sure set the tone for me! (I just finished my first cycle of chemo...doing fine but feeling older than my 57 yrs.
)I just did the radiation mapping last Tuesday. Yup....got myself three little tattooed freckles now. It stings a tiny bit when you get the tattoo...but it's very minor.
I do hope Mom gets an empathetic person in rad. onc. to explain everything to her. If not....insist on someone who is warm and compassionate. I had a nurse who gave me the info sort of as though we were discussing a new transmission for my car. Left me feeling a bit shaken....as it's a lot to absorb and this woman never smiled once...the whole time.
Tell your mom she's my inspiration to get thru the rest of my chemo and the 30 days of radiation. I will be looking for posts to see how she is doing and she will have my prayers, good thoughts and regard throughout....so be sure to tell her that, too!
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Shelly....forgive me if my memory is faulty here and it wasn't you that said this....but I'm remembering you saying in another post that your dad was given the WRONG medication (by his brother?) when you weren't there and had left instructions to only give him (whatever the right med is).....am I remembering right?
Well...certainly I'd think the wrong med could account for some of dad's odd reactions/behavior.....not to mention him being dehydrated!
I'm so sorry the family just leaves this to you and then criticizes all your efforts. Proof that no good deed goes unpunished.....eh?
Hang in there, Shelly....it sounds like the results of dad's tests are a lot better than what you likely anticipated....and I'm continuing my prayers that you get some better answers and that dad gets the help he needs! Hoping that PET scan provides some answers!
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Peggy....you just grab onto that hope and keep hanging onto it....and know you have the power of all our prayers and hope behind you too, as you go forward with this latest news.
All we can do when we feel flattened or overwhelmed, is just put one foot ahead of the other and keep moving forward....with HOPE! I know you are doing that and we're here to help or sustain you in those efforts.
Believe in your user name! You chose it for good reason and it will serve you well....just as it reminds us, too, to hold on to hope. We all understand the anxiety and the urgency....but treatment will be starting soon and we'll all be praying for good results.
We're here whenever you need us...so please come talk when you need to.
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After looking at the front page of our paper this morning, I turned to page two where I found this same article!! I found it hopeful and encouraging and thought it was about bleepin' time somebody updated the growing survival rates that we, here, know to be true!!
I mean, we all know how dismal much of the survival information is on the web....so to have this published and out there is, I think, very definitely a good offset to other, more depressing statistics.
Without hope....all of life is a struggle. If we walked out our doors each day and didn't even "hope" to make it across the street in traffic.....then why try...huh? (I'm thinking of that beer truck Becky keeps mentioning!
)So any news that is hopeful, encouraging and positive NEEDS to be heard....and I, for one, was quite happy to see this article!
Not to mention the other "bonus" of this article...which is that it reminds the public that lung cancer is still #1 and since none of us are invincible....maybe such articles will encourage more research and funding into the #1 cancer.....eh?
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I'm another of those newbies who is so inspired by your story and your reaching this 5 year mark! You just prove the power of a strong spirit, humor and the will to keep fighting the good fight! ( I don't even want to THINK about a remodel in the middle of all this.....oy!!
)I look forward to many more years of your wisdom and the next post and celebration five more years down the road....and then another five after that, and so on.
Congrats, Fay!
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I hope I haven't offended or discouraged anyone. There are so many options to consider.
Not in the least....your post is full of hope and success....something we all need to hear.
I'm so happy for your great news!! Stay well and keep inspiring the rest of us to reach the same goal! That word "cure" has the sweetest sound to it...doesn't it? Sending you a big congratulatory hug!
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What a wonderful report! So happy the surgery was not so extensive and that the surgeon expects a quick recovery! Looking forward to hearing from you soon, Nancy!
Heal quickly and hurry back to let us know how you are. Sending you speedy healing vibes!
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Shelly...
Sending you strength vibes and keeping you and your dad in my prayers. I agree with others who say you need to try to get some needed rest and to just put aside the comments, blame or issues of others. You know what you feel in your heart and all you've done for your dad...and no one else's words can take that away from you.
I hope that being in the hospital and getting rehydrated will help restore your dad to more normal behavior. Just know it's not him talking right now....and don't let the words wear on you. Once he's rehydrated he may be much more himself.
Hang in there...and know we're all right here with you.
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Peggy.....nobody wants what feels like a setback in a fight like this...but they happen. You both have the fighting attitude though...and there IS some good news in this...that there are no fractures. Plus....you have all of our prayers coming your way too, you know.
I'm new here...but I can understand your hesitancy to share what seems like discouraging news, even though it's often the reality for many. The road this fight takes us on is rarely smooth, it seems. But a part of what inspires the hope and courage in all of us is hearing how people face the setbacks and triumph over them....continuing to fight and do well.
This is such a wonderful community. When I'm feeling a bit scared or down...I know I can find comfort and courage here...and always the generous prayers of others.
Know we are here when you need us to be....and even when you don't. Know we are praying for better days, better results, better news ahead.
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Woo hoo!! Great news. Keep such good news coming!!
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I'm almost a month out from not smoking and the cough is a lot better. Very little tickle anymore.
Now...about these optical migraines...which it seems a lot of people have also encountered....I'm pretty well convinced that they are greatly impacted by stress level!
Years ago...when I got my first one....I was out on the golf course!! Not at all stressed!! Over the next 6-8 years I had maybe 5-6 of the migraines....and the headaches never were that bad.
Since my cancer dx....I've had numerous optical migraines and mostly on days when I was particularly stressed. Have even had two in one day!!
I think breathing deeply, and lying down and closing one's eyes for 15-20 minutes will take care of most of it. It does for me, anyway. I may still end up with a bit of a headache afterwards...but most of the time I don't even bother with a Tylenol for it.
I just finished my first round of chemo on the 30th.....so hadn't even started chemo when I had 6 optical migraines between the 13th and 24th of May!!!
Haven't had one since, (knock wood
) but imagine there will be more stressful days ahead and I'll probably see that silvery, winking arrow again! -
Well, that stinks....eh? But...now you can just look forward to rescheduling the trip at a time when you've got your energy back and are feeling fit to travel!
Hope that time comes real soon, Mo! Feel better!
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Thanks, Beck....I needed to hear it from someone who's been thru it. If you could get Oreos down....then so can I!
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Two years ago I tried to quit smoking and was doing very well on my own. Then my doctor said I really shouldn't be trying to do it without some help and he put me on Wellbutrin. It really didn't agree with my system very well. I had some severe mood swings and truly, for an anti-depressant, it depressed the %$^# out of me!!
Needless to say I went back to smoking.
Well...the day I had the biopsy to find out what that "patch" in my lung was all about, was the day I smoked my last cigarette. That was only 26 days ago...but I found fear to be a good motivator.
I heard somewhere....maybe it was here....that treatment works better if you can quit smoking. I want to give myself every shot at beating this thing....so I no longer smoke! Do I still reach for my pack sometimes? Yes. Do I miss a smoke after a meal? Yeah....although less and less each day.
I have gum here and nicotine patches...but have not had to use either one yet. They always say a person won't quit until they REALLY want to and are ready to quit. Well....I must have been ready because I have to say it's been easier than I thought it would be.
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Here I've been doing so well...staying positive...made it thru the first round of chemo with nothing much worse than a bit of fatigue....and now I'm half terrified after meeting with radiation oncology today.
I had the simulation and got the little tattoo marks and they loaded me up with info and all the possibilities. I've been reading thru some of this stuff...and I can't help it, I'm getting nervous. Mostly about being able to keep myself boosted nutritionally in order to avoid the feeding tube.....and then they scare the bejeebers out of you too, about what happens to your skin!
I will go in each time, early, for the IV infusion of amifostine, which is the radiation protection. But even THAT can cause nausea and b.p. problems and a rash and I've got to take anti-nausea meds an hour before and then drink half a swimming pool of water with it to make sure I'm hydrated.
Fear of the unknown again, I guess. I mean, once things are under way maybe it won't be so bad...but I need someone who's been there to talk me thru it a bit....give me some first hand info on what I might expect.
I probably won't start the radiation until the week of the 21st...and I don't want to lose another 5 lbs. worrying about it betweeen now and then.
I'm BREATHING....I promise. And trying to relax. But anyone who's had the mediastinum radiated....can you tell me how it was for you? How did you eat when it was hard to eat? WHAT did you eat or drink? I need some tips on keeping the weight on....and tell me too, were you good about trying to exercise a little in order to keep your energy up?
Give me the primer on radiation, please. How to prepare for it and how to get thru it with a minimum of problems. Thanks!
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Sending you prayers and all positive thoughts, Nancy!
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John....a question or two re: staging. Everything I've found says that sclc is staged differently....either limited or extensive only.
Yet sometimes here, and in this post of yours....it appears that sclc is staged like nsclc.
Can you explain this to me? This is all very new to me, obviously....but I keep reading to learn and to have intelligent questions to ask my doctors.
As for surgery, my oncologist said that was not an option for me...yet I am limited stage with a 1.5 cm infiltrate and lymph enlargement in the mediastinum. I think the largest lymph node was 3 cm but it was termed "mild to moderate lymphadenopathy".
The finer points of distinction in some of this escape me yet. Can you help clear a few points up for me? Thanks in advance!!
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I think Dave and Don said it all.
When my family moved across the country in 1983...about a month later my widowed mother called to say she had "a little tumor in her colon that had to come out". No big deal, right?
It was malignant, of course, and mets were already in her liver and lymph system....and I'm now 3,000 miles away.
My mother was 72 at the time...and her two older sisters lived in town, plus one of my older sisters who did not drive and had myriad health problems of her own.
Long story short....when Mom needed me...I flew across the country to do what I could for her....allowing her to remain for as long as possible IN her own home and with her independence and dignity intact. I'd come to realize how important this was to her over the years of her widowhood. She managed just fine and it mattered to her to remain in her home where all the memories of life with my father comforted her!
I flew back and forth about 9-10 times in 2 years. The last trip out...I brought my then 6 year old with me, leaving my 11 year old, my hubby and my two dogs behind.....and my little guy and I stayed with mom for three months. For two and a half of those months, my sister was also in the hospital....so I sorta did triple duty there for a while. Mom had just finished radiation for bone mets and was in pretty bad shape...
At the end of those three months, I needed to get my own family back together...and Mom understood....although she didn't like the necessary results. We placed in her a very nice nursing home...but she just was not happy there. A month and a half later, when she went into the hospital for her 5 days of chemo....she slipped into a coma on the second day. I think she was determined NOT to die in a nursing home. I rushed back out West and got to see her again, even tho she was comatose. She picked her own moment, I believe, and let go and slipped away peacefully on Christmas Eve, l985.
It never would have worked if, say, I'd insisted she move East to be with us. It sure would have been more convenient for ME....but SHE was the patient and it would have totally disrupted her life...plus meant she would have to start all over with doctors...and she trusted the ones she had.
It's a hard call....but again, I think Dave and Don make the most valid point. The caregivers.....the family members....need to honor the patient's need to feel as much in control of their own life as possible. To keep one's independence and dignity....to feel one has SOME controls over their lives when this insidious d*mn disease strips a person of so much control.....becomes even more critical.
Maybe if you step back from this a bit....your dad will work on your mom about it. Try not to get your feelings hurt in this....because it probably has little to do with you, compared to how much this has to do with how your parents feel THEIR lives have been disrupted.
It's not always easy to prioritize. My hubby and I were supposed to move this Oct/Nov. Our home here was "supposed to be" on the market right now! All that has been put on hold....and we are building the new house in the southwest....so of course THAT part of the plan goes forward. Now we have to pay for the new house BEFORE we sell this one AND we've got mounting medical bills. Not to mention moving away from the medical team I've established here...which is also a concern.
All we can do is take it as it comes. My health comes first. The rest will work itself out.
Try to enjoy Dad's remission...and I pray it lasts a long time! Let him encourage Mom about a move....and you stay neutral and see if that helps lesson any "pressure" on them.
Meanwhile, all you can do is continue to love them and help however you can. You sound like a loving daughter...and they are lucky to have you. I'm sending postive thoughts your way that all this works out so that everyone feels very comfortable!
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Oh, boy...it doesn't sound like this trip could have been much better than it was!! I'm so glad you all had a wonderful time....and I love the idea of the 7 smooth stones. What a lovely and spiritual way to make the trip even more special!!
I think it always feels great to get home...maybe that's the best part of a good trip, eh? That it makes us really appreciate home when we return...even IF it's with a big pile of laundry!!
Welcome back Don and Lucie. I don't know you well yet....but I too am sorta disappointed that we won't get to see you in a kilt, Don!
My daddy, BTW, was born in Glasgow! I spent a little time in Scotland myself in l969. Long time ago when I was young and energetic!!
My hubby and I would love to go over someday to play the old course at St. Andrews....as we are both golf bums! If we ever make it....I sure hope we get the kind of weather YOU got!! -
Hey Jen....I'm a newbie too. And I just started chemo yesterday and had the second dose today. My doctor gives some Decadron and Zofran by IV before they drip the chemo drugs...and I have had NO nausea at all.
They also sent me home with some meds to take later...and a schedule for them...and that included some Ativan in case I had trouble sleeping...which I did last night. I think the anti nausea drugs can sort of wire you up a bit.
I think, for me, the anticipation has been worse than anything. Not knowing makes you nervous. But now that things have started...I feel like something TANGIBLE is being done to fight the cancer...so it's making me feel really good, really positive!
I refuse to "borrow trouble" and I'm keeping as positive an attitude as I can. I think it really helps. When I get a bit nervous, I close my eyes and try to do some regular, deep breathing...and I also do postive imagery. I imagine my body healing...the cancer leaving. My symbol is a yellow hard hat
and I picture little miniature hard hats running around in my blood vessels kicking the cr*p out of the cancer!! 
Try your best NOT to be nervous. Take some notes of the questions you have and ask. I found the oncology nurses to be SO sweet and so willing to answer questions...so ask away. Knowledge is power...and having a strong, positive attitude might just help you NOT suffer many side effects.
I will have radiation with my next round of chemo...so realistically, I figure I might not feel as good as I do this go round. But I will continue to practice the breathing, the positive imagery AND getting as many good laughs in each day as I can....even IF that means watching reruns of The Nanny or Seinfeld!!
Hang in there...don't hesitate to ask questions here or at your doctors...but I'm sending out a prayer that you do as well as I've done on this first go around of chemo. Truly...even my appetite is better now that chemo is underway. I think that Decadron has something to do with that....but food is tasting better and I'm keeping my weight up...which is important too!
Good luck. Let us know how you do...but I'm betting you do just great!
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They know alot more and feel alot more
than given credit sometimes.
Oh, I absolutely agree. I have a friend who had a mole on her leg. One day her dog came up to her after she was just out of the shower and started to try to BITE at the mole. It caused her to go see her doctor about the mole....and you guessed it....it was a melanoma!
There are some dogs that can actually be trained to sniff out cancer in people. If I ever come across a good article about this, I'll post the link. Can't recall at the moment where I first read about it.
While dogs don't have the same emotional capacity as humans...(it's just that we humans want to THINK that our dogs poop on the rug out of spite~!
They don't. They poop because they have to go and maybe no one is there to let them outside!)...they are very sensitive to human emotions....and things on a level that we humans cannot really understand. I mean, how does one ASK the dog what he's thinking?But it's easy to see sometimes, how they react to OUR moods or emotions...and of course their noses are much more finely tuned as is their hearing.
I just thought it was interesting that Mattie sniffed RIGHT at the spot where the catheter had been in my hand...and then she wanted to lick it. I didn't let her...I mean, I'm sure there was no residual chemo left there...but it made me nervous anyway. So....I let her lick my cheek instead and that made her happy!
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Such wisdom! I hope you'll often share these "random thoughts" with us Dean, because they are wonderful, thought provoking and wise!
Thank you.
And Bean....God is there....maybe not beside you holding your hand, but maybe He's holding you in His hands right now. Breathe, dear....you're not alone.
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WARNING: INNER THOUGHTS, WHO AM I NOW--Just a body?
in GENERAL
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Dear Elaine....
I think I'm going to have to print out your post.....and consider it all for a long, long time. I thank you very much for posting it!!
I think - in your own eloquent way - you've touched on a few very important things....not the least of which being that since WE are all "limited editions".....so too are our experiences with cancer. The physical, mental and spiritual experiences will be as uniquely individual as we are. Therefore, NONE of them can be said to be too "odd", goofy or "wrong" to talk about!!
I'm barely starting out on this journey. It hasn't even been a month since I heard the dx......and already, I feel like I've covered a ton of spiritual and mental ground....so many "possibilities"....so many things I've thought about, considered, ruminated over that quite likely....I'd have left in some corner of my brain for a while, were it not for hearing those words, "You have lung cancer".
Fear takes you on some interesting mental journeys. Having cancer is a life altering event. For me....it's partly that thing about - once you have cancer and even if you're deemed "cured"....it's sort of like a home invasion. Our bodies were invaded by the cancer against our will...and if it happened once, it can happen again. That, to me, says that living with cancer is living - always - with a certain sense of vulnerability that is somehow different from other illnesses. At least, that's how I see it so far.
And as I said, I'm just beginning this journey. There is SO much to assimilate....because I don't think any of us want to live with fear being a part of our daily state of mind. Denial doesn't quite feel comfortable either. It's hard to sort through ALL of the emotions we feel...and find a balance that leans more towards strength, determination and a positive attitude towards being the VICTOR in this battle.
There are too many "fear of the unknowns"....I suppose. Waiting for test results to see how treatment is working...or where we stand. Feeling every ache, twinge, pain or physical difference as a warning or alert, raising the fear level again.
I read some of that vulnerability here, in the posts of others....and I try to keep myself aware, yet balanced. I know there will be some rougher times ahead...and I try to prepare for that too....just as I'm eating like a pig right now to boost myself before radiation starts in a couple of weeks or so.
Maybe, as a sort of bottom line to your thoughts....as I interpret them....what you're really saying is that cancer upends us. Turns our lives upside down. It's like looking in a Funhouse mirror. All of a sudden everything we "knew" or believed in seems somehow changed. Different. Scary. We no longer have the same sense of security or order or normalcy in our lives and we're just not quite sure HOW to deal with what feels unreal in a sense. It's sort of like being on the inside of a funnel....a tornado....and we WANT to feel grounded, solid, secure.....but we don't. We can't yet.
And yes, nightime is the worst. Already it has been for me. Mornings....especially when the sun is out....seem hopeful and bright and happy to me. I can almost forget.
But nights are dark....and so they encourage dark thoughts.
Do you keep a journal? Perhaps if you wrote your thoughts down in a journal on the nights you feel most at sea....or alone, adrift in your own mind.....it would help. Things in black and white that we can look at and see, seem somehow less scary than the thoughts floating around in our heads....don't you think?
Or else....distract yourself at night. Watch a movie...a comedy! Or read a good book...and lose yourself in that. A favorite magazine maybe? Or go "window shopping" on the net or in the newspaper.
Yes, we are more than bodies and prayers. We are spirits. We are our emotions. And under the circumstances, I believe we have every right to surround ourselves only with those who will support us in the ways that we need right now.
Tuesday, I had my radiation mapping. The nurse I mostly dealt with was so dispassionate, matter of fact....borderline "cold" that I came away from the appointment and cried more that day that I have up to this point. She, in fact, terrorized me with her demeanor....the lack of empathy, the very matter-of-factness (without ONE empathetic smile in the whole exchange between us!!) of how she presented me with the information.....some of which WAS simply terrifying in its own right! I mean radiation to the chest ain't a cake walk....NOR were we discussing a new transmission for my car. But we may as well have been!
I have decided that should I need further services from a nurse in radiation oncology....it won't be from her. She didn't do anything wrong, really. She just is NOT a personality that gave me any comfort or sense of compassion. And I'm sorry.....but right now I don't need "calm, cool and efficient".....I need a little empathy until I fully absorb what I've been handed!
Sorry...got off on my own little tangent there....but your words, Elaine....ALL of them are thought provoking and important. I will follow this discussion...as I believe already, that this diagnosis takes us places in our minds that we never figured on going.
I believe things happen for a reason and that even in the very worst of times, there is always some sort of silver lining. I expect to be paying a lot of attention to things that I perhaps paid little attention to before. If I have to go thru this experience...I want to find EVERY single BIT of "good" that may come from it. I do not believe this experience IS or has to be "all bad". Call me a Pollyanna....I don't care. This belief is what will help see me thru.
When I survive.....not IF, but WHEN.....there will be something I need to do to "pay back" or pay it forward for the gift of survival. I believe that too. It's only by thinking about the sort of things that you've brought up....that I will figure out what it is I will need to do.
Again....thank you for this post. I hope a lot of people jump in with their thoughts...as I think this sort of "hard to express" discussion can be very important.