Life does not end with a stage IV diagnosis (really!)
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I had not seen the news about Etna's smoke rings. I lived on the side of Mt Etna for a little over a year, then in a community nearby. It was such a great experience for the kids, and for us.
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@eleanora We really did have a great experience. It's a very different lifestyle there andxthe people were super friendly. It's much more family-centric than here and laid back...except for the the driving! 😲
Etna was very active - always doing something - belching gas or ash - we could see the lava flows at night from our neighborhood one of the times she erupted. They say all that activity makes her safer, since she regularly releases pressure.
My kids have a much broader view of the world, because of that experience.
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This thread has been quiet for too long. I am going to try and get it going again while @exbrnxgrl is still with us, in case she objects. It was one of the most important threads for me when I was first diagnosed with MBC. Even though my MO said I might live several more years, I didn't believe it and in those early months my life seemed all about going to medical appointments and wrapping up my full-time job. This thread gave me hope.
Anyway-today I reseeded my back lawn. In the fall of 2023, I had my gangway (sidewalk along the house) replaced with new cement. I didn't realize until 2024 that the contractor had put the old cement back into my yard, destroying my grass and most of my perennials. This year I decided to try and regrow the grass. I had to remove all these rocks, weed it, then try to aerate it manually, plant the new seeds and finally water it. The parable of the Sower kept running through my mind-wondering if the birds will eat the seeds, if the ground is still to rocky, etc. But I've done my part and now it's time to sit back and wait to see if new grass will grow. I'm kind of doubtful since my yard is so shady but it has been fun to try.
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Good idea, chicagoan. I agree i found hope here when i came back dx with stage 4.. That was 8 years ago.
Im not in the garden this spring. A second bc dx and i had chemo and mastectomy. "Cured" of that" for now. But then hit with shingles that wont quit! Love to be outside. Few Cultivated perennials left in my garden in favor of native wildflowers. i live in an area rich with wildlife. My happy place is the woodland across the street.
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Thanks to Chicagoan for reopening this thread. I'm interested in positive stories about our stage 4, it makes me feel good to read you.
I've been in stage 4 since January 2023 and I also know that my life expectancy may be a little shortened and deprive me of certain projects I had for my old age... but I bless every day when I feel good, with energy and then I launch into what I like to do on a daily basis. These little hobbies enrich me enormously: going for walks with my husband, cooking a new recipe, starting up the little vegetable garden and trying out new plantations, observing nature....I find that I have a much richer life than before my diagnosis. Of course there are ups and downs, and in the more difficult moments I adapt my pace of life. I'm lucky to be well surrounded by my husband and my care team, and I appreciate every moment of sharing. These last 2 years have been a beautiful journey, and thanks to the forum I'm moving forward with greater serenity.
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Hello - I don't recall being on this thread but think I may have popped in when first diagnosed with stage IV in Feb 2024. These popped up in my email so was nice to see some happy activity, stories and some hope. Thank you for starting this back up. I'm a gardener also and have been trying to get a few things done this season. It's a little hot already but I am going to do some planting on a grey or rainy day and then just maintain everything for the summer. Oh, and I'm going to try to grow some grass in a sandy area of my yard that I had given up but Chicagoan you inspired me to get on it! GailMary I hope you get those shingles taken care of. And I love wildflowers too. Soldanella - walking is one of my favorite activities Good for our bodies and definitely our minds. Hope you all have a wonderful weekend.
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Gailmary - You're not alone with the shingles problem. How long have you had yours? I've got them too, and it is the fatigue that's killing me. I've only had a small rash that didn't blister at all. A week or two of some not at all pleasant burning and itching and that's gone now, but I continue with big time fatigue and stomach trouble. I'm sorry you're in this boat too and wish you a speedy recovery. My happy place is also in a "more wooded" area of my very urban neighborhood. There's just something about those plants and the birds that just do it for me.
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When I was first diagnosed, and I was sure death was knocking at the door, I started reading War and Peace, and my joke was, "I can't die until I finish War and Peace." Twenty-one months later, I still haven't finished War and Peace, and my plan is to never finish, which may very well make me immortal.
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@tougholdcrow Good plan! I have so many books around this house that I haven't read. That is one of the many reasons I don't want to die yet.
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Tougholdcrow - Love the War and Peace story! I've never even ventured to try that one. I remember when I was growing up, we had tons of books in our house; mostly my parents' old college books, but more. Among all that was a two volume set of War and Peace. For some reason, even as a child, I knew it was a daunting one to get involved with, and I've never read it. I still have some of those old books myself, but I don't know whatever happened to War and Peace. I might ask my brother if it wound up with him.
Chicagoan - All those old books around the house. I never thought of them as being something that could help us keep going by wanting to read them - it's a wonderful motivator. Interesting, because I've been working with a professional organizer to "downsize" and all of my old books are one of the things she seems to have zeroed in on as things we could eliminate. I fight it, especially those old ones from my parents, as I do think I still might read them someday, but also, they just give me some comfort and security type feelings because they did come from my parents and my childhood. Since I'm alone, those old books can still provide me with a "kinda/sorta" sense of family moral support or something.
This is a very interesting topic that I would have never thought about on my own. Thank you both Tougholdcrow and Chicagoan for sharing your personal perspectives here about all of this. Good food for thought.
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Please add me to the book hoarder's group, although none from my parents, as they moved a number of times and my Mom had little sentimental feeling for them, so out they went! I donate lots of books to a resale shop that supports families in need, but more seem to magically appear in my house 😉
I love them for their ability to take me away from the negative aspects of my current situation, and I have an "emotional support book" with we whenever I leave the house!
I have two resources to recommend, both of which I've used many times for several years with no customer service complaints 🤭 I love second hand books, particularly when I find comments from a previous owner in them. Thriftbooks is a wonderful source for those, and if you buy $15 worth, shipping is free. For those who like ebooks (I read these while I ride my stationary bike) there is an awesome site called BookBub. When you sign up, you tell them what genres and authors you like. They will curate what's available and every day you will get an email with suggested books - most of them $1.99-2.99, and sometimes free. There will be a link to Amazon for the actual purchase. Please note that I have no connection with either of these sources.
I would love to know the authors that each of you like, as I'm always looking for new ones. Mine are Amor Towles, Erik Larsen and Maggie O'Farrell.
Happy reading!
Eleanora
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You LADIES would love it here with all the wildflowers. I've got over 60 species for both prairie and woodland. And more in our woodland and wetland across the street. The birds are insane here. My Merlin App recognized 20 different birdcalls in 5 minutes during peak migration this spring. I can hear them but i cant always find them in the trees.
Im a bit of a book collector too. I find it odd to enter somebodys house and not see books! I usually pick them up second hand. I havent read much but always thought I'd enjoy them as i slowed down as i get older. I turn 69 this month and have been laid up with chemo etc since last Sept.. No better time to read, right? Well chemo made my eyes dry and blurry. Ugh. Better now so i picked up a book. A refreshing change from some of the stuff you find on-line. Before i thought all the online stuff was much like reading a magazine. But much has become repetitive. No favorite authors from me yet.
@threetree I hope your over the shingles soon. I didnt think they were exhausting cause of all the chemo drugs etc. But yes, i napped alot. Slept easily. Its been great as ive been a serious insomniac since a kid. I injured my side in February causing alot of nerve damage. That triggered the shingles. It hasn't let up yet. I was surprised to learn it affected my intestines. Quite constipated. Stomach has been fine. I hope this motivates someone to get their vaccine. I had shingles once before, then i waited for the vaccine to be in stock,then covid and chemo. I kept waiting for a goid time. And still I'm told to go get it.
Went to a pig roast today. A birthday party tomorrow, and another get together on Monday. Found a painkiller that helped. A good time.Yay.
I hope everyone is enjoying the weekend.
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@gailmary, what a stellar weekend with wildflowers and birds; pig roasts, and a birthday party. We really hope you were able to enjoy all , and that others are catching some joyous moments this weekend.
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I am happy to see this thread pulled up again and I thank once again exbronxgirl for starting it. The words she shared in the first few posts on this thread always resonated with me - to paraphrase her: don’t let this diagnosis steal your joy and your life one second sooner than it has to.
I took a while to sign in and add to it because I don’t really have anything “exciting” to share. But that’s actually a good message I think - Just going about life’s ordinary moments, spending time with family and friends, pursuing the simple things that I enjoy is still a blessing.
It’s entirely possible to have things settle back down into your familiar routine — with of course, the new rhythm of treatment, endless treatment in the background. But having a “boring” life to live each day still feels like a blessing to me.
One thing I am ”excited” about though is stopping Herceptin and not having to see a single doctor or dentist for three whole months! In August, I will be living with this disease for 8 whole years and NEAD for 6 years. I am really grateful for what these drugs have done for me, but I still don’t miss the constant doctor appointments, sitting in the waiting room, sitting in the infusion room, getting 6 tubes of blood drawn every three weeks….etc. Not to mention the possible serious side effects, although H/P was pretty kind to me in that respect.
Someone I know from another support group says “Gonna live til I die!” Yup, me too.
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I am glad this has been bumped up as well. I have been stable for 4 years, my oncologist says it's because I have a low burden of disease. Can you have a low burden of disease and extensive bone metastasis at the same time? I didn't ask because sometimes I think oncologists are guessing what's happening.
I live a fairly normal life. I worked for 3 years after I was diagnosed with stage IV, but I retired 8 months ago. Life is very peaceful in the sense of not being under pressure to do anything, but I keep up with projects, hobbies, and travel. I would like to live long enough to have grandchildren and get to know them, other than that, l dont think much about the future and just get on with things.
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I have a low tumor burden but because it was in the pleura of my lung but no where else, i am told there is a high risk of spreading and returning elsewhere. My prognosis in April with my new oncologist was. Prognosis: still more than several years; not curable. That is nice and vague. She also changed my ibrance dosing to 5 days on 2 days off and I find my energy levels are more stable. My husband is hard to motivate to do any traveling. We can't fly because of his vertigo issue. I am trying to convince him to drive to New Orleans in the fall making many stops down and back. I am in PA. It is one place I always have wanted to go. For now. I am enjoying the summer which finally arrived. Waiting for the pool to open at my daughters house. It is getting a new liner.
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Sunnidays, I agree, they do guess. My original medical oncologist used to tell me “there’s the science of medicine and then there’s the art”. I think part of the art of medicine is when doctors lean on their own experience and gut instincts to figure out what is going on, rather than just the peer reviewed studies. Let’s face it, not everything about this disease has been studied yet!
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I got carpal tunnel surgery today. I had made the appointments two and a half years ago. Then got this stupid diagnosis and cancelled all the appointments because I thought I was dying, so what’s the point? Well I’m not dead or even sick. So life goes on. I see it as a leap of faith!
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I can relate…but I kept on going to the dentist for crowns and implants even though a voice in the back of my head was saying “Are you spending all this money just to die pretty?” 😝 But I did it anyway!
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That's awesome, AJ and olma61. Not the carpal tunnel, that's a huge pain, and I hope you have full motion now. I'm more open to new things now, like embracing my chemo curls. I am visibly changed, and not all for the bad. (Ok, I could do without the wrinkles, but aren't they a sign of character?)
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I get a little jealous when I hear about chemo curls because chemo combined with menopause I think, has taken away my naturally curly hair and just left frizz. It’s only lately that I see a little of the curl pattern coming back but my hair is still very thin and lifeless. I should probably try a good hair cut, I used to go to the Deva Curl salons but I got to a point of why bother with this thin frizzy and gray hair.
I chop the ends off every so often and keep wearing my wigs. Lately, I’ve been having the urge to get a good cut though. Maybe I’ll treat myself and just see what they can do with my sad menopausal chemo hair.
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You are beautiful in many ways, @olma61
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Hello all
Keeping busy is my mantra although to much wet weather has prevented gardening jobs for many months.Im missing overseas travel due to chemo regimes but
For the past five years I have found events that extend my costume design and construction skills and history knowledge….viking medieval steampunk and regency. Lucky to have a sister also keen to attend events as well
I have continued to compete new outfits for a yearly 3 day Regency dance and workshops each year the designing and making of garments
Mid May very chilly Exeter southern highland NSW Australia
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That is awesome , @bright55 . I have an interest in history myself, but I've never in-habited it!
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I could get in to making costumes. I love some of those garments. Just kinda glad i dont have to wear them!
I make quilts and enjoy using the 1800s reproduction prints. I've done none since winter. I' m usually in the garden all spring but this year 3/4way through chemo i started having pain on side and lower abdomen. I thought i had the answer when spine doc suggested shingles. But mri just showed a hemangioma on spine. Always something. Maybe wednesday well have a treatment plan for that.
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@eleanora , thank you. no treatment from the back dr for the hemangioma. He insists that the pain there is a pulled muscle. Never saw symptoms from those in 12 years. Its from doing next to nothing. So will wait and monitor till i get a compression fracture there. Pet scan due in 5 months. We can see its progression then. Had to see a different dr for pain meds. Celebrex is helping.
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Thank you. See the gastro for a follow-up on Monday. So glad that celebrex is helping. I have been on it for years for arthritis, and there has been some discussion that it's anti-inflammatory effect may help with cancer. I think cure-ious mentioned it a while ago on the clinical trial thread.
Eleanora
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@eleanora @gailmary I was on Celebrex for about a year and it was quite helpful. Unfortunately my Primary Care doctor switched to a boutique practice and it will be 20 months (this August) when I see my new one. In the meantime, when my prescription needed to be renewed, a PA refused based on my eGFR scores. I did a spread sheet and she's correct that my scores have dropped since being on Celebrex. I got another NSAID for a month but now a different PA doesn't want to renew the prescription again. I have a lot of pain from my arthritis from being off of an NSAID. Eleanora-have you ever had issues with your eGFR score? So you take Celebrex daily. I really hope to get back on it when I see the new doctor in August, but of course, I don't want to risk kidney failure. My scores used to hover around 60, now they are often between 50-60. Having the arthritis untreated is really affecting my quality of life. Walking has gotten to be laborious which is a first for me. I am doing PT but it doesn't seem to be helping. I'm going to try a massage and acupuncture this week and new ginger capsules. I do think the Celebrex also helped with my cancer.
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