Life does not end with a stage IV diagnosis (really!)
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Caryn,
I hope that your scan results are good, thinking of you. Hugs
Sarah
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hi debic,
Thanks for your post. I do like it when people can have differences of opinion but not get offended or get their knickers in a twist. I didn't mean to be preachy , just pragmatic. For me, it was like someone saying, "Every time I touch the stove, I burn my hand." And then that person's husband saying " My wife touched the stove and her hand got burned after I worked very hard to keep her from touching the stove". My very pragmatic mind simply says that if the stove is a problem, and you've got bigger problems than that, just stay away from the stove right now. I do understand that some people are very fragile and sensitive, but on a public forum, you are going to get opinions ranging from A to Z, from people with various communication styles, you do have to let some of it roll off your back, and not let it drive you to the ER.
I am on spring break this week. My goal today ( to keep from dwelling on PET results) is to do a major shoe purge. I have far too many, some hardly worn. I also have a 10 lb bag of organic carrots that I'm hardly making a dent in. Carrot juice anyone?
Caryn
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I hope your scan goes well Caryn. I did not know Starbucks coffee doesn't come in a gallon size. I think Dunkin Donuts does though.
My scan is next Wednesday. My "mommy" of course wants to come with me, so I won't get to make that b-line to Starbucks. Well, maybe I could stand up to her. If there is anything worth receiving her wrath, it's coffee. LOL
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Sending positive vibes for best scan results possible.
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carton. Good luck on your scans. I always enjoy reading your posts and esp love this topic. Hang in there.
Dune. - get your coffee. Mommy will have to just wait in line herself.
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positive thoughts for good scan results0 -
Hi ladies,
Thank you all for your kind thoughts and good wishes. At 11:02 pm, on the night of my scan, my mo sent me a message (and the report) letting me know that I remain NED. Of corse, I was sound asleep but I checked as soon as I woke up, and let out a long, grateful sigh. For all of you waiting for scans and/or results, check out our new waiting room, complete with soothing music, comforting snacks and relaxing beverages:
https://community.breastcancer.org/forum/8/topic/8...
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exbrnx,
Congratulations on the good scans! I'm just back from a great vacation and catching up on threads, but I wanted to let you know that lots of us appreciate your sensible attitude toward living with mbc. I have scans tomorrow and I hope to hear that faslodex is working for me, but even if it's not, I'm nowhere near the end of the line.
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carpe,
Thank you and wishing the best for you. Come on over to our newly opened waiting room...
https://community.breastcancer.org/forum/8/topic/8...
Caryn
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So happy to hear the great news !!!!!
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yay for NED! Love this thread! I'm also very close to my 4th year. April 20 marks my bday and cancerversary. In this amount of time I have done lots of camping, flying and taken up several volunteer opportunities. My youngest son has gone from being a baby to a crazy funny four year old. He has a gigantic vocabulary and witty sense of humor. My oldest son has gone from 1st grade to 5th and my middle daughter has my son's same 1st grade teacher. It's a great ride. Now we're taking riding lessons. I say "no" to being too busy. We have lots of laughs. While cancer is a &$*#* thing to endure. I love having the excuse to do things now. Fight to live - live to fight. 😊0 -
Caryn,
Count me in as someone who always finds your posts enjoyable and enlightening. I'm sorry for whatever caused your "rant" but feel free to express yourself always. And anyone who can start a topic called Life does not end with a stage IV diagnosis (really!) may be pragmatic, but sure can't be very pessimistic. Congrats on your scan results! Best,
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This morning I accidentally poured milk instead of syrup on my son's pancakes. Thankfully, they were the frozen kind so a minute and 10 seconds later, he had a new batch. Problem solved. But I ate the milk covered ones. #noshame.
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LOL jj!!
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Dr told me to take claritin it is working, eyes stopped water guess it is allergies
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Blondie,
Glad you found the solution to your watering eyes. Our allergy season has been miserable so far (SF Bay Area). I just switched from Claritin to Zyrtec, but it's not perfect. Tried eating local honey but that didn't seem to help
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Hi there,I posted this on Liver mets group, but want to share it with you as well, please see below copy/paste
Hi everyone
I'm in my doctors office, getting my third chemo. Met a woman who just came for 6 months check up with a new born (!) baby. We got to talking and she told me that she came to my doctor from Sloan Cetering where they basically told her Sorry but Sorry, go get your affairs in order.... She is stage 4, TN with bone mets now in remission and a month ago she gave birth to a beautiful boy! Is not it amazing?!!! Could not wait to share it with you. Wish you all the same happy story (well ...not necessarily with the baby ;-) )
Xoxo
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Ella, That's awesome! I hope she stays in remission for years and years and years....
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Ella, what a wonderful story.
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I love reading these posts!
Last week, on the day I usually watch my granddaughter after work, my dd called to say she was very feverish and asked if I could watch her at their home, instead of bringing her to my classroom. No problem, of course. She was fussy and somewhat listless, though Tylenol eventually kicked in and lowered her fever. When I went home, I thought how wonderful it was that I could do something so "normal" as take care of a sick toddler. This is exactly the kind of normal I crave (though I don't wish for her to be sick).
Just a few more weeks until the school year ends. So much to do, so I'm sure time will fly and then, it's off to Alaska
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Has anyone been to Hawaii? This was one place on my bucket list that I gave up due to distance & cost. However, after recently been given the "talk," decided once more to look at options - like breaking the trip up - flying to CA, staying over & then to Hawaii. Been dragging my feet on this since Xmas due to all the negative chemo reactions, etc., but my 2 daughters have the last week of August off, so I'm once again looking at it. I understand that's hurricane or tornado season, so would purchase insurance for that as well as medical. I've not traveled much in my life, so I have absolutely no clue where in Hawaii or where to stay. I have an appt. with AAA next week, but they want you to come prepared as to where you want to go. I've hear good stuff about Maui and possibly Waialua (N shore of Oahu). I hear Maui can be wet, but not all parts. Just want everything easy access, relaxing, beautiful & simple. Would like to be on the ocean with pool at hotel.
Any input, anyone? Thanks ...
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syrmom,
Glad to hear that you're making plans and if you go to Hawaii, you'll make some wonderful memories too! I've been to both Oahu (once spent 6 weeks there) and to Maui several times. All of my visits were in the summer and never had weather issues, save for tropical rains that usually come and go quickly. Here are a few things you might consider as you plan:
Do you want to be near an area where you can walk to to shops, restaurants etc? (Waikiki is good for that)
Are you interested in a hotel or condo/apartment? One way to save money is a condo (of which there are many) so you can prepare some or all of your meals .
Will you be renting a car? This also figures into your decision. Most attractions are spread out so you'll need to decide what things you want to see and whether you want to drive or use tour providers (plenty of those!)
Neither Maui nor Oahu are very wet near the shore. The north shore of Oahu is lovely, but far from other things on Oahu (well, as far as anything can be on an island). I find Maui more relaxing, but Oahu has some of the more well known tourist sites. I also find it more culturally "Hawaiian".
My favorite place to stay on Maui is the Napili Bay Beach Resort. It's right on beautiful Napili Bay. (Napili Bay is in West Maui. You can walk to Kapalua Bay and Ka'anapali and Lahaina are a short drive).Calm waters, gorgeous beach, snorkeling etc. The buildings are low rise and very Hawaiian, grounds are lush and tropical. Most units have kitchens and ocean views and there is a restaurant on the grounds. Check out their web site to get an idea of an option other than a high rise:
http://www.napilikai.com/maui-and-kaanapali-accomm...
Feel free to ask me any questions and happy planning
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Hi all
I read this thread often but think this is my first post here.I love the mix of optomism and pragmatism.
Syr mom I have never been to Hawaii so no ideas for you. But wanted to share how impressed I am with your planning. I am 6 months into stage 4 and almost over the shock. My life has a daily rhythm. I pay attention to caring for the house, the garden, and my family, more than cancer. I have let myself move forward on getting a bathroom redone that has been a long overdo project.
But I continue to struggle planning for fun. This has me confused. I have always been a home body but this is looking like isolation. I will continue to find inspiration in this thread.
Thanks to everyone.
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welcome 3-16-2011,
Long range planning can be scary. Your mind keeps saying, "But what if..." Less than 6 months after my stage IV dx, I had a fantastic opportunity to take a cruise to NZ/AUS, two countries I had never been to. I wanted to go very badly but those "what if" thoughts almost stopped me. Well, I went ahead, said yes, and found travel insurance that covered pre-existing medical conditions and had the time of my life. I even climbed the Harbour Bridge in Sydney. Since then I have taken another cruise and have one to Alaskacoming up in a few weeks. I am pragmatic about the fact that bc could change all of my plans (hence the insurance) but I figure I might as well plan and enjoy until I can't. Travel is something that has always given me pleasure and enriched my life. I'm not giving that up for cancer until I absolutely must
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Syrmom, some questions to ask at AAA are, "what is your most popular trip package to Hawaii" and "what is the most economical way to take the trip". I've always found AAA to be so very helpful. You can take the info they give you and discuss with your daughters before you decide. I'm glad you are taking the trip! Money spent seeing new places is always money well spent.0
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Hello everyone. So I am a bit confused, and yes I am a member although I have not updated my profile yet. I was dx staged 4 mets to spine L3L4. I am reading these posts and what does being out of stage 4 mean. My doctor told me I am terminal less than 3 years and maybe 5 if I am one of the "lucky ones". He said once you are stage 4 there is no cure and no chance of remission so I am soooooo confused. Can someone please help me understand all this.
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Hi dixiebell,
I'm not sure that anyone (save 1-2%) is ever "out" of stage IV. Some have maintained stability or NED ( no evidence of disease) for several years and then change treatment and may be stable or NED again. As for your onc, unless he has a crystal ball, I don't know how he can give you an expiration date. The five year mark is becoming an outdated stat. Would you consider a second opinion or a new onc? Mine has never put a time limit on my life. I'm four years in to it and doing very well. I hope you find someone who can help you, not write you off.0 -
Syrmom
I stayed at Turtle Bay Resort several years ago. Absolutely beautiful, but you would need a car, nothing within walking distance. But the resort it self, on the ocean , pool and beautiful rooms
Dixiebell- I would get a second opinion. There is no "cure" but folks go for many years with treatment. If you onc can't say there is hope and various treatments in you future, I would look elsewhere. You don't want false hope but neither do you want to pack it in just yet. I am two years out from stage 4 dx, doing well, taking care of life's daily challenges, albeit with a new perspective. My onc is always sure to tell me that when my current treatment stops working, there are many others in the pipeline. No false promises of living untiI I am 90, but hope for good years yet to come.
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Hey, just checking in with you all, after days of browsing this thread. I was diagnosed with Stage IV a couple weeks ago. Lung mets. I had just come off of Herceptin, was supposed to get my port out in a few days. It was a shock - one I am still feeling - but I am taking my cue from you women and staying positive, doing what I can to stay as strong and healthy as I can. I am meeting with my oncologist on Thursday to plan a first line treatment plan. Am leaning toward Herceptin and Perjeta, with or without Taxol. I really don't want to go on chemo again (I did TCHP first time around, but it's seeming like I have to. Is it your understanding that it's as much for trying to prevent further mets, as it is for trying to shrink the lung mets that are already there?
Sorry to have to start this journey, but am glad for the companionship! Thank you!
Cheers,
Katherine
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Katherine Yes the doctor tries to keep things stable. Life right now for me is treatment then after 3 months or so a scan to see how things are going if things are fine same treatment if not we try something else. It's just a matter of learning how to compensate and live as well as you can while you can. Fortunately my daughteer keeps on giving me reasons to stick around. Last year it was her wedding now I'm looking forward to our first grand daughter who should be out late Sept early Oct. I find it weird to have ultrasound pics of her. Heard there are now 3d ultrasounds but think she's going to skip that.
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