Life does not end with a stage IV diagnosis (really!)
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Thanks for your post Moira. I'm 7 months into my diagnosis. I've seen many encouraging posts in this forum. I continue to work full time, though getting around is sometimes difficult as I'm sure it is for many of you with bone mets taking Arimidex and XGeva. I try to stay upbeat and hopeful but I do slide into the dark side more often then I care to think about. I went to the eye doctor because my vision is deteriorating (but is it the bc or is it that I'll be 55 in a week). After the exam he told me I need to come back in 6 months for a recheck. Recheck of what? Wish I knew. I called to ask if I could get a copy of his notes to take with me to the mo, his secretary said they would rather fax them direct. Guess I find out about that and the PET scan on Monday. So my bucket list is smaller...I want to see my son married (about 2 years off) and I would love to see a grandchild, don't know if that is in the cards for me or not. One thing that I don't think I would have experienced if I hadn't been diagnosed (1st 2009 Stage 2 Non-Hodgkins Lymphoma, then Nov 2013 Stage IV bc with bone mets) is how many compassionate caring people I've been blessed to have in my life. I find the nicest things in the most unexpected places! Hopefully I will get to a point where I don't fret over every scan and every "something" some doctor sees but doesn't want to share with me. Guess one way is to read the posts of you amazing, strong, hopeful ladies!
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You have no clue how much reading your post and the ones after has helped me and even gave me hope so Caryn I want to thank you and all the other gals too!!! sometimes everyone needs a pick me up and today was my day so again Thank YOU!!!!Deb
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deb5013,
You are most welcome! Those of us with stage IV bc run the gamut from fairly normal to gravely ill. I started this thread because I saw a few posts by newly dx'ed women who were ready to put one foot in the grave or had automatically decided that they had to curtail their lives, make no plans etc. While this can be true at some point for most/all of us, we also have an awful lot we can do and many happy things to look forward to. I am sitting at LAX right now, slightly irritated by a one hr. flight delay (NY area bound), but ever so happy that I can still travel. So I will read, play on my iPad and work on my nålbinding. Things could be a lot worse
Take care.Caryn
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Just a little update. My cancer continues to run amuck. It has now spread to my brain. Onc caught me wobbling so he ordered an MRI. There is only 5 so hoping WBR will make short work of them. No riding until I get my balance back, dangit.
We had a great time for the Fourth! We took our camper to my SIL's lake house. We boated and over ate! I even tried the paddle board! Managed to stand up twice - and biff it twice! LOL, not bad though for a gal with no balance
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chele,
You are the spirit of this thread that Caryn created. I'm so sorry about the rotten news... WBR had better hold up it's end of the deal so you can get on that horse again very soon!!!!
So glad you enjoyed the Fourth... eating and boating, yay!
Thinking of you... with love...
Rose.
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we woke up yesterday and decided to go camping! Our first family camping trip. It was so fun and such good memories made! Note to self for next time--NyQuil for my 3 year old!! Just kidding. She seriously was awake all night talking! Love that I live in an area where we can be way back in the national forest in 45 minutes!
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Chele,
II want to chime in here. I was so blown away by how you are living and the things you are doing that you were part of my inspiration to take up hiking again. Hope the WBR kicks those mets to the curb.
KKjones,
Your post brought me back to my childhood when I would wake up and find my mother enjoying a little gin and tonic while watching Carson and I'm fairly sure she gave me a little sip every now and then. Hey, it was the sixties.
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Chele, Hope you get back on your horse again soon! Sorry about the brain spread. I'll be cheering on your WBR. I am definitely a member if your fan club! Glenna
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You all honor me too much! You've really touched my heart with your kind words. It is all of you that inspire me. Local people comment in all I do, I tell them there are lot's of women just like me on BCO. All just LIVING!
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I hope all you gals know how much you truly inspire and give hope to all with your stories when I logged on the other day I was really down but after reading Caryns post as well as others I felt so much better and have a much better outlook you are all truly angels in my eyes and you may not think your words mean much but they have truly touched me and gave me hope so I want to thank you all , as I was tired of being a Debbi Downer literally lolHiugs, Deb
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Love this topic. Rather than complaining about losses (body parts and physical capabilities) I like hearing about how others are coping. exbrnx hope the unveiling goes well. It has been typical lousy summer weather here, hot hazy and humid Take an umbrella with you to the unveiling, either too much sun or thunderstorms.
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Went to Cancer Treatment Center - Midwest Medical Center 7/13 for PET scan and labs, 7/14 to see the MO and the rest of the "team". Best early birthday present ever! PET scan showed NED. Since my original diagnosis was at Stage IV, I know this will never completely be gone, but I love that it's taken a vacation and may stay away for quite some time. So glad I decided to seek another opinion from an accredited breast center, I wouldn't want to think of where I'd be if I had gone back to my original oncologist (for lymphoma). I was under her care since 2009 and she completely missed this. My Doc at CTCA just published a book too - there are some really inspiring stories of his patients in it.
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Congrats on NED! Our lives our forever changed by a stage IV dx, but many of us find a way to live good lives. Just had my port flushed. This has now become normal for me and I don't mind at all
Going to a new yarn store today to buy more wool for my naalbinding habit. Then going shopping for shrimp taco ingredients . Just a normal and lovely day!
Caryn
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Sharon,
I'm so glad to hear that your bc has taken a vacation! That brings to mind dealing with stage IV and planning for vacations. Up to now, vacations have been very last minute, "seize the day," but DH and I just made reservations for a trip to Australia and New Zealand for NEXT MARCH. That will be four years since diagnosis and so far I haven't even had to change medication. We did go for the trip insurance, but even if I do finally have progression we have every expectation of being on that cruise.
Here's wishing us all many months and years of NED and his friend Stable Boy!
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Carpe,
I just went to NZ/AUS in early 2014. I can't tell you how much I loved both countries. I am very well traveled but this was a truly special adventure. If you haven't seen it before, here's a brief clip of younger dd and myself at the top of the Sydney Harbour Bridge. What a thrill. Enjoy your planning.
https://m.youtube.com/watch?v=49IhgIVBc84&feature=youtu.be
Caryn
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carpe diem, way to kick the diagnosis to the curb and get on with life. I've also learned I don't have to always be spontaneous about vacations and can feel somewhat comfortable, even daring, planning them in advance. Last summer I booked a cruise to the Bahamas for this summer hoping and praying to see it come to be. I will be going on it soon with DH and DS; can.not.wait! Yes, bought the insurance and will be happy not to use it! I also am already vaguely assembling a vacation in my mind for next year, have always wanted to see Mount Rushmore & Crazy Horse and so I see a flight to Rapid City, SD for me in the future.
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Carpe, good on you! It was hard my first year to think of making plans and the like, but we have just returned from a bucket-list vacation, and I am starting to plan on Italy next fall. I see no reason why we wouldn't go (though I'll take trip insurance just in case).
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Good on all of you! I've got my sights set on an Alaska cruise for next summer and then a full transit of the Panama Canal after that.
Caryn
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In my head planning for Austria and one other country next summer. Won't begin the actual planning until January or so Keep moving forward!
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Caryn,
The Sydney Harbor Bridge was on our list, but I didn't know you could climb it! I'd better up my exercise hours.
Divine,
If you're going to Mt. Rushmore, look into visiting Custer State Park in South Dakota. Besides being where the buffalo roam, it has an excellent restaurant with Native American specialties. But the real reason is so that you can take the Iron Mountain Highway:
"This scenic highway runs from Mount Rushmore to Custer State Park. It includes three tunnels purposely engineered in the 1930s to "frame" Mount Rushmore as people drive from the state park to Borglum's gem. The governor at the time of construction, Peter Norbeck, is quoted as saying visitors should drive this highway at a very slow speed or 'to do it full justice you should get out and walk.' The latter a bit extreme, but a point well taken.
There are also a couple of bridges along this road made of wood. They are truly stunning in appearance and design, and worth the cost of maintenance.
Highly recommend this route!" from Trip AdvisorI second the motion,
Janet
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Ooh, carpe dime, thanks for the tip! The highway is exactly something I would like to see in addition to Mt. Rushmore and I had never heard of it. I love trying to hit many highlights of an area. Last summer on our way home from Virginia Beach we drove about 25 miles on Skyline Drive (it is about 460 miles long running through the Blue Ridge Mountains) in the Shenandoah National Forest and the views were breathtaking. Really added to the trip.
Btw, I am a fan of and also contributor to Tripadvisor.
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Carpe,
Yes, you can climb the super structure of the bridge. It is really not as difficult as one would think and safety is first and foremost. As a matter of fact, you spend over an hour going over safety, suiting up and practicing going up and down the ladder steps (four sets, but after that the climb is pretty easy). It is expensive, but worth every penny in my opinion (don't let anyone tell you that walking across the surface walk way is the same!). BTW, I went with three other women. The youngest was 23 (my dd) and the oldest 71. Here's a link to the company that does the bridge climbs:
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Carpe Diem,
So glad to hear of your long status and your vacation plans. I have to do a little carpe diem myself. when I got the DX I really trimmed back on my bucket list, now I want to make a couple long term plans. Congratulations to all of you for getting some of those bucket list things crossed off. Once I get through this 1st year and get all the bills paid off, I'd like to go on a couple of sightseeing trips with the Hubby and the dogs.
I hope we can all learn to seize the day!
SharonA
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Nel,
Austria was beautiful, you will have a great time! We went to Salzburg and Vienna in April. I fell in love with Salzburg.
I love reading about all of the adventures on this thread. Thank you, Caryn:)
Rose.
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I am new here having gotten my Stage IV diagnosis only a week ago. I know in my head that it is not an automatic death sentence BUT (you knew that was coming) my heart is just spending all day sighing - if you know what I mean.
And I am so against doing chemo again which is really giving me heartache too. Just trying to muddle through and decide what to do.
Will finally meet with 2nd opinion next week so maybe I will feel better then.
Thank you for listening and being here. I feel sure I will need help.
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Austria is beautiful! When I left the Peace Corps, I visited a friend in Vienna. My Peace Corps country did not have good cakes and pastries so I ate my way through the Grinzing area and gained 10 lbs. in two weeks. In Salzburg, I found my inner Maria Von Trapp, much to the annoyance of my traveling companions. Isn't planning for adventures, whether close to home or far flung, exciting?
My good news is that after engaging in battle in the hot Silicon Valley real estate market, dd and SIL have bought a home. They got the keys yesterday and will spend the next two weeks painting and doing things that are easier to do in an empty house. They have been living with me since January, so no pressure to move in . I'm heading over there today to check out what kind of wallpaper is in the entry hall so I can figure out the best way to strip it (yes, it is ugly). Years ago, in the house my kids grew up in, I stripped the wallpaper in what would become my younger dd's bedroom. Underneath, there was another layer of paper. Under that? Another layer! What a project. Hopefully I will not have the same experience when I tackle their hallway. Hope you are all keeping on as best as you can and finding happiness whenever you can.
Caryn
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wrsmith2x,
Oh, the beginning is the worst. Wrapping your head around a stage IV dx is a real roller coaster. Ride it out, the good and the bad. I have never done chemo, so can't offer suggestions or alternatives on that front, but getting a second opinion is great idea. I see that you're triple neg. I know that we have many triple neg sisters here who will be of great help. Thinking of you.
Caryn
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wrsmith2x - What you are feeling is absolutely normal, and we've all been there, unfortunately. Give yourself some time to come to grips with it an determine your treatment plan. For me, knowing the treatment plan was a huge help and once I started my treatment, it helped as it made me at least feel like I was doing something. I hope that your 2nd opinion appointment goes as well as possible and that you get some peace about what you are going to do. I hope that will also bring some peace in other ways as well. Even though most of the time I am able to see things as being fairly normal, I still have those days where I need to just lie on the couch and do nothing but watch tv. I've given myself permission to embrace those days and for lack of a better term "wallow" a bit, and just know that we all understand that part of it for sure.
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Hello Ladies, With all the trip planning talk, I thought I would share with you that next Wed. I am going to the Bahamas for a weeks vacation at a resort called Sandals. My son, who resides in Seattle, is also going with his partner, then my DH and I. I am very pleased we can be with my son because Altho we do see him it is not often enough! After the week at Sandals we think we might spend a few extra days in Miami on the way home. Sandals is an all-inclusive, adults only resort on the Bahamian island of Great Exuma. The beach is the BEST, warm clear turquoise water and white sauger sand! I LOVE a great beach! So I am pretty excited to be going. I just hope I will stay well. I know that I can't do a lot of stuff I would if I was well, so going to be careful. I really do not want to be seeking out oncologic care in a very small Bahamian island! I'm sure they have a resort nurse or doc but for minor problems. It's only about an hours flight to Miami so guess that's where I would head if really necessary. I have been hospitalized here a few times of late, infections and dehydration. So I really do have to be careful. But even if I just spend the day in our suite in bed it will still be wonderful!! Probably the most difficult parts will be getting thru airports, customs & so forth. Very bad neuropathy in my feet makes walking any distance painful,and difficult. I will use a wheelchair for all that. I hate having to give in and use a wheelchair or a walker but it will make the trip possible so I will just shut up and do whatever is necessary!! My onc was ok about my going as long as I feel alright. I just had chemo yesterday and don't have to again for three weeks, so I won't miss that lovely experience. Ugh.
Hope all of you are well while I am gone. I will be checking in occasionally, maybe I will have my son show me how to post pics on here to share with you.
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Ohhh Judie, I couldn't resist googling to see the Bahamas, it looks Devine! The water is so clear, the sand so white, the resort looks fabulous, and I so want to relax in one of those beach cabanas!
Have a fantastic time!
Dawn xx.
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