Life does not end with a stage IV diagnosis (really!)
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Lynne, thanks for asking. Physically I am well thanks to steroids relieving swelling. I am eating all sorts of my favourite foods today since tomorrow is surgery day. I will be glad to remove the tumour and I like setting the goal to be out Monday. I go in tomorrow morning but as soon as I can, will be updating all here. Hope eveyone is doing well, congratulations Kandy on the birth of your grandson being so close.
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Kandy - baby pictures soon and that all goes well!
Amy - Love the pool, ENJOY!!!!
Caryn - good luck with the new school year
And everyone else - love the good news and we all keep moving forward. I have told the non-profit I am working for that I will be gone by Dec 2017. It is a long time but I need to get my financial house in order and they have some work to do to prep. I hope I continue to do well, remain Ned and am able to enjoy many retirement years. Need to get my condo ready for sale, get my young adult children settled -
I am very excited today - I am going to get a new toe joint. You would think with all we have been through and are going through, that my toe would be the least of my issues. But the pain from arthritis, even while I am sleeping and the need for frequent cortisone shots - enough already. I have never been this excited for surgery. I am getting a new toe!!!!
. Will be scheduled for the early fall, I don't want to limit the few more days I may be able to grab on the beach. Life does go on after stage 4! I am getting a new toe!! It is the little things in life!
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Nel, You must be looking forward to December of next year, but you will be very busy in the meantime - selling your condo, settling your kids, wrapping up things a work. Wow! I have never heard of surgery for a new toe joint, and I find it fascinating. I can imagine how painful your toe must be. We constantly move, bend, and put weight on our toes. I am glad you are taking advantage of the beach days before the surgery. Here's hoping you stay NED for many, many years.
Lynne
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Amy....this site is called "life goes on....." So don't apologize. This is where we post how our lives continue to go on, even with our stage IV diagnosis. Pictures of those wonderful things we are still doing, (time with grand kids, new pool, vacations etc...) are all what gives each one of us the inspiration to keep living our lives to the fullest we can! Thank you for sharing.
Julie
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Nel, congratulations on your new toe. I would be excited too. Toe pain is like having a toothache, their relentless. So glad you are having it fixed.
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Its a new toe and I am beyond excited!!!! What is wrong with me??? I do not have to live with the pain just because I a stage 4/ Life goes on!!
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Nel, Unrelenting pain even in a toe can make you feel bad all over, no doubt about it. Good luck on the surgery. Good call on waiting for the fall! Wish I could get my ankle replaced....I have constant foot pain from crummy foot problems. I hope you have a great retirement as well with many years of NED....I have to say from recent experience that selling a piece of property is a major pain in the rear! LOL! Constantly tidying up and the realtors nit pick EVERYTHING! We had a very busy start but no offers yet.
Yes Lynne, I really hope we sell soon as I get pretty excited about redecorating a new place too! We found a great place with a wonderful view of the golf course, yet smaller and more affordable. Unfortunately we have to sell out place first.
Oh my gosh, a week Kandy! I would be jumping out of my skin! Are you getting around pretty good these days? I'll bet that pool really helps! Yep the golf course thing is for my husband as he is a golfer. I am trying to think ahead for when he may be alone someday in that he has a more manageable house with an outlet to meet people and get out for some fitness and relaxation. But I may just try driving a few balls myself or at least drive the cart!
Hi Julie! Nice to see you and I agree, never apologize for good news!
Mara, We will all be thinking of you tomorrow and I hope you are sprung by Monday!
gramen, Planning a wedding, that is so exciting! Definitely send us pictures of that!
We are off the Santa Cruz for the weekend. Yay, some beach time before I return to work.
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I am enjoying reading the huge variety of comments and opinions on this thread! I just signed up tonight. I was diagnosed MBC in January as a recurrence of a stage 1a cancer from 2010 that was supposed to be highly likely to be cured. You can read my story on the story thread. Anyway, I've really been struggling with the 'how long am I going to live' question. I like hearing both the good stories and the not as good stories on here. I want to be super optimistic, but I am a medical professional (RN) and can't get past my 'realist' self. I'm so glad to have found this site and hope to make everyone's acquaintance. Where else can we talk candidly without making people who aren't affected uncomfortable, right? I don't think anyone can really understand what is going on emotionally very well without a 'life-limiting' diagnosis hanging over their head.
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Welcome ih8cancer these are an awesome group,of woman so glad I found this as well.
Nel so great to be pain free I bet. Funny I have two very bad knees and I have been thinking they would never do knee replacements on me it would be a waste. On the other hand I'm very active and hate this constant pain. After all some eighty year old can get new knees why can't I for crying out loud☺️.
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Hooray for a new toe, nel! No reason for chronic pain, stage IV or not.
ih8cancer,
Welcome. I just passed my 5 year mark, and though not in the medical field, I am quite pragmatic. Despite that, I have given little thought to how long I might live. Yes, the thought crops up every now and then, especially for things that require long term plans, but I just assume that I will keep living until I can't. This dx may be life limiting, but since no one can tell me when that limit will be reached, I will keep on living.
Still waiting to hear from the endocrinologist but too busy with getting ready for my new students. My younger dd and baby Miles stopped by my classroom to help me (Miles helped by being so stinking cute!). A colleague popped in sand we had a brief chat about how much we loved the new pencil sharpeners the school bought us. My dd said that only teachers could get so excited about pencil sharpeners!
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welcome, I h8cancer. When I read your post it reminded me of a conversation my husband and I had the other night. While I am very glad to be here 8 years post stage IV diagnosis, there is this nagging little reminder that I could be running out of time. Maybe this WILL be my last Christmas (I have been wondering that for years), I must say, though,my that most of the time I am just living the life I have, enjoying some travel, enjoying my grandchildren, my friends and family. But I can't seem to run away from that little voice who seems to pester me more the longer I am living! My sister is an Rn, so like you I think she tends to worry more bwcause of your knowledge base. Sometimes the less we know and understand, the better. lol! YOu've found a great thread. I have it bookmarked because I don't have time to read everything but love to check in here. Again, welcome. You can say anything that's on your mind here and that is a blessing!
Sharing a recent picture of 6 month old Delilah the day she got her ears pierced! She's my youngest grandchild!
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A good pencil sharpener is super important! I used to beg the school secretary for a new one whenever I was assigned to a classroom with one that sucked! Xacto sharpeners were my favorite. Love those sharp pointed pencils!
About the toe thing, it's like many parts of the body, you never pay any attention to them until they are causing you pain! Glad it's on the mend.
Welcome, Ih8c. The first months/year seem to be the hardest. You are still finding your new normal. Antidepressants or antianxiety meds can help, many of us, me included, benefit from them. I also had to retrain my thoughts (over time) to live more in the here and now and not project myself into the unknown future. You will be surprised how much life you can pack into one day and then the next. I'm glad you found this site and thread and hope you find the support, insight and information you need.
GatorGal, beautiful photo of your happy granddaughter. Yesterday my two grandkids started school. Josie is in 2nd grade and Liam started kindergarten. He's now five years old, he was born five months after I was diagnosed stage iv. Love them so.
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Photos of our grandchildren reminds me that each of us has left or will be leaving a legacy. There's something special in that skipped generation that says we as parents did something right because our kids survived to want children of their own. I once heard a saying that grandchildren are our reward for NOT killing our kids.
For those mentioning bucket lists, I started a bucket list thread earlier in 2016. If I find the link, I'll post it.
Good luck with the new school year Caryn. I have had two major careers in my lifetime, insurance fraud investigator and weddings and events planner, however none have instilled the thrill and excitement I hear from you Caryn when you talk about teaching. I bet you will be that "one" teacher who truly inspired those students who go on to greatness and will give credit to you in their commencement speech or when accepting a Nobel Prize! Just wait...
Nel, good luck with your bionic toe. Funny how our body parts are so intricately associated together and one when is out of whack, your whole self is too.
Another weekend upon us. I hope you all enjoy every moment and that Monday doesn't come too soon.
With love,
Amy
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divine, super cut picture of your grands, first day of school,is such an exciting day. ,,. For the teachers and the students!! I do miss working at times like this
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Good morning to everyone and welcome to the newbies. Gatorgal, Delilah is gorgeous. Such a pretty smile, I don't know how anyone gets anything done with her around. I would have to hold her and love her all the time.
Mrs Divine, your grandchildren are beautiful too. First day of school was always so sad for me. I didn't want to give up my time with the kids.
I hope everyone enjoys every moment of today. Best wishes to all.
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welcome to the newbies!! This is a great discussion board!
All of you beautiful ladies have a great weekend! I am keeping my grand children this weekend...we are going to see Pete's Dragon! They are 7 and 11...so much fun! And the best part...spoil them rotten and turn them over to mom and dad!
Prayers for each one of you!
Julie
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Mara, You are in my thoughts. I hope that things went well yesterday and that you are recuperating without issues.
Sending hugs and good vibes to you.
Lynne
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Thanls Lynne
Meant to say everything was fine for surgery no issues cognitively and was walking around
Supposed to get rid of bandages round head. Tylenol has taken care of pain so far.
Everyone has beautiful families which helps so much.
Hope Pete's dragon was great. Thinking of you as well Caryn.0 -
Mara, I am so glad to hear that surgery went well, that you have no cognitive issues, and that the pain is manageable. You certainly didn't waste any time before you were up and walking around. Thank you for letting us know. I hope you are home soon.
Lynne
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Hi all,
Can I jump in and join this thread please? I was diagnosed with lung mets in mid-July and have just finished my my first chemo cycle. Spent my "week-off" fighting a chest infection and just as I am starting to feel better, face the prospect of starting cycle two this coming Wednesday. Definitely need reminding that life does not end with a stage IV diagnosis
Di x
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Dix, a great thread here that Caryn started. I think it definitely shows those newly diagnosed that it is NOT the end of the road, there are many on here that have been around longer me, and I think 8 years is amazing, I'm still working on my bucket list and since I keep adding new things, I may just never get finished. Welcome! You don't have to post uplifting things, you post what's on your mind. I think there are enough positive posts to lift us all up, just a little, right when we seem to need that lift the most.
Glenna
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Hi ladies ! I like this thread too! I found out four weeks ago but I have extensive bone Mets and have been trying to wrap my head around that since that day . It helps to know that we have so many people that are so far out from a stage four diagnosis . I have a bone biopsy CAT scan guided on Wednesday and I'm nervous about that ! Then I see my oncologist again the following Monday to see what kind of treatment they're going to put me on . I am starting to have some pretty significant pain in my upper back in between my shoulder blades and up the back of my neck. So I hope they get me on something quickly . Thank you all for just being here and just letting us know, or reminding us to keep hoping
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Just a quick welcome to those who have just found this thread. There will be ups and downs. Don't give up on the "ups". Plan that trip, buy that car, new coat or whatever strikes your fancy. Eat that favorite food and drink that frou frou cocktail. Whether you live for 10 months or ten years (and no one has a crystal ball), find happiness whenever and wherever you can,
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Lovely pictures ladies I hope I will be so lucky one day to have a grandchild. Divine your grandkids have your smile totally funny how the genes work eh?So got back from the island regatta had a great time weather was fantastic and so were all the ladies. Did five races dodging ferries float planes and kayaker what a blast
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Mara, I am so happy you sailed through your surgery and are up around so quickly! Hope the Tylenol is the only thing you need and get home and back to your life ASAP.
Welcome Newbies! Ih8C, The worst times i have are a few days before a scan coming up. Other than that I am just moving along and trying to do the things i have always done with a few tweeks here and there. there are bound to be bad days but mostly life is good...Hello Di! I hope you find yourself joining us a lot here. it is such a great source of inspiration and encouragement. I hope the next round of Tx goes better!
Gator, Delilah is a gorgeous baby! like Kandy said, "How does anyone get anything done with her in the house"? haha!
You too Divine! Gosh those kids are darling! I have a daughter named jordan but I call her Josie al the time and love that name. I love the holding hands pic!
Julie, taking grandkids to the movies sounds like a heavenly afternoon!
Caryn, We had a lot of money in the budget this year and the last thing I purchased for the teachers was new electric pencil sharpeners! LOL! they were thrilled!
Good luck on the bone scans Gracie! I hope they get a good Tx going for your pain...
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artist, thank you so much! I'm hoping and praying it's still er/pr+!
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Good luck to everyone with scans.
Thanks to everyone and the good wishes. I did get out of hospital today as hoped by me. Pretty amazing that Friday I was in surgery, today am home. Still feel like me. Tylenol when needed for pain. Staples are weird but not even painful I must say. Hardest part was being told by my neurosurgeon team to stay off my turmeric/boswellia I like for my joint pain until last checkup to avoid blood thinning. Of course I will listen because I certainly do not intend to cause any issues for healing. MRI on Sunday looked good for any swelling, slight bit outside but is expected. Not overly tired but that is also probably the steroid. Will be starting tapering as of tomorrow over about 9 days. Cut to half tomorrow, half in another 3 days, one last half for 3 days and that will be it til we figure out treatment for the brain met. Only did have the one. One little part of tumour remains but only due to being around an artery. Not concerned since am sure some sort of radiation will be involved.
MO thinks I will be NED but is going to check bones to make sure but looks like from CT the treatment has me NED from neck down most likely pending bone scan. Too bad I got the brain met but on the other hand, it did not spread for almost two years or more so hoping once treated I get some extra time before worrying about others. If so great, will go on about life as much as possible. I will say I feel lucky that surgery was good, no loss of function in body or mind to this point. Not lucky it happened but at least if have to have surgery am lucky went this way. I have a new respect for treatment too which is utterly unlike me. I was the biggest wimp when it came to having a cold and now so much surgery over the last year and a half mastectomy/port/craniotomy and chemo is crazy that I got through. Much like your awesome selves and you keep doing. Inspires me to keep doing to. Life does NOT have to end with stage IV that is true. It is hard and scary but can be done.
Thanks all of you again asking after me and anyone who is having a rough time with SE or upcoming scans please know I am sending my thoughts your way too. Sorry to ramble but was just so happy to get out of hospital. In about a week I will start all the other appointments but am a slight bit less scared too.
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Mara, WOOHOO! It is great news that you are home and doing so well. You will probably be tempted to overdo it, so try to remember to take it easy and let yourself recover for a little while. You have a wonderful attitude, and I admire you for facing things head on. I hope you are NED and continue to be for a very long time. I am smiling for you as I type this. Thanks again for updating us. Another WOOHOO for you!
Lynne
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Mara, that is just awesome. You are a trooper. Great characteristic to have as stage 4. Welcome to the newbies. Hang in there, it does get easier as time goes on. Julie, I took DD3 to see Petes Dragon. I think I loved it more than her. I hope you and the grandkids had a great time. To everyone else, enjoy the moment and hope all is well with everyone. We are still waiting for our little man to arrive. Guess the Dr was wrong about that he would be here within the week, lol. Oh well, guess he will come when he's ready. Wishing everyone the best.
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mara, that is pretty awesome how well you are doing and I am constantly amazed at how much the human body can endure! It makes me feel more hopeful when I read about everyone else's perseverance and fortitude. I thin Lynne is very right when she says "Don't overdo it", as us women do tend to feel invincible sometimes, and the high from the relief of pulling through so well will magnify that feeling. I am hoping big time for NED for you!
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