Life does not end with a stage IV diagnosis (really!)
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Good morning ladies. I just wanted to introduce myself - I was recently told that a scan I had showed a few spots on my lung and some nodes in my chest. I am still in the process of information gathering and have decided to move my care to the Seattle Cancer Care Alliance, since I only live about an hour away. It may make treatment difficult at times but I don't trust my current clinic with my care.
Since I received this news (it's been about two weeks) I can't stop crying, I go between wanting to live a long life to feeling like life may as well be over now. That's why the title of your group caught my eye. I just need some hope to carry me a bit. I've been praying and looking into alternatives like exercise and nutrition to help support my body but then I just fall in a ball and cry - so overwhelmed I can't hardly move. I'm only 46, still raising teenage kids and have so been looking forward to the phase when they are independent and hubby and I could reconnect. Now I feel like that's all gone. I know everyone is different but please tell me that there is some hope for me - I want to be here but I don't want to suffer forever.
deanders
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deanders, I was lucky enough to attend a conference in Seattle 2 years ago for MBC and I was so impressed with the resources up there. You aware in a great place for treatment and knowledge
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Deanders, this is all very new and very shocking for you just now. All of us have experienced that initial terrifying few weeks. Some of us however have been “living with cancer" and that is an important phrase, for several years. Some of us aim to live as normal a life as possible (and that is the main focus of this thread) whilst still having treatment, some work, many are bringing up families. Personally I was diagnosed stage 4 in April 2018, 12 years after my primary treatment. My team ( as I call my medics) told me I may have months or years, they had no way of telling. I read the stats and thought that's it for me....stop reading Dr Google if you have been...most of it is several years out of date. New treatments are coming out all the time and if / when one fails they try something else... there are several lines of treatment before the scary stuff!
Exbrynxgrl is a good 8 years down the line and still working full time.
I started on Letrozole and Ibrance ( there is a thread for that too) with 3 monthly scans. 6 months later there was no evidence of active disease showing at all on my scan ( NEAD) and a I am still the same now over 2 years later. The level of anxiety around scans is intense, but we learn to ' put them in a box' the rest of the time and be vigiliant for symptoms. The Covid situation is pretty much what we deal with all the time in terms of immune suppression, constant hand washing, avoiding crowds etc. But it becomes the ' new normal' for us, we don't think about it.
Progression is the word we all fear, but we cannot live in that heightened stress state all the time. Everyone is very different and we deal with things in our own way. My team over the years have given me 2 key pieces of advice.
1. The more relaxed you can manage to be, keeping active and living your life as well as possible the easier this will be for you, your family/ friends and your team.
2. We'll tell you when you're dying of it... right now live with it.
I think I've used every cliche in the book in this post, but I'm sure others will chip in!
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deanders,
Welcome! I have actually been living with mbc for 9 years (just hit that mark in July). When I first joined bco there were few stage IV members who lived more than a handful of years but that is no longer the case. This thread is filled with folks who are trying to live as well as possible and find that after a time things may be surprisingly normal. I teach first grade and save for my initial 3 month medical leave have barely missed a day of work. However we are all quite different and not everyone’s story is so positive but there are more and more of us! I can’t even remember all the new treatments that have been approved since my dx. While we are not quite where we wish things were with mbc, progress has been made and is continuing to be made! There is hope.
So on the topic of teaching full time... my school district is small and financially solid. We are also in the heart of Silicon Valley so we have all the tech we as teachers need and easily supplied all students with devices and made sure they had internet access. Despite all of these advantages, I really don’t like distance learning 2.0. Yes, I can “see” my students every day, I have mastered Zoom screen sharing and I can even use my iPad to screen mirror into Zoom so students can see me modeling things. But, they are still only 6 years old and sitting in their own homes. You can just imagine that self control is a major issue but even small things like muting/unmuting their audio make everything take much, much longer. Most of all, the part that I loved most about teaching is gone. Forming relationships with my students and having face to face interactions are gone and that’s what I miss the most! There’s nothing I can do to change it so I’ll carry on the best I can but I really miss my kiddos!
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Deanders, this is a great thread and I found and continue to find so much hope and inspiration from these ladies! I am about 10 months in to my first year of stage IV - it was a complete shock as my "risk" was considered to be low after treatment for stage 1 back in 2008. Devastating when I think about the what if's, my kids, husband and our dreams for the future but I have way more good days than bad and try not to dwell on the what if's. I am a patient at SCCA and love my oncologist/onc PA. They are new to me as my original oncologist from my stage 1 dx retired in 2014. The first few months are rough, as you know. It's still raw but thanks to this discussion board on bc.org I don't feel crazy or alone and see stage IV women thriving. I have had a great response to treatment. I am doing pretty well and to be honest, feel fine on Ibrance/Faslodex. Like Karenfizedbo, after 7 months of treatment my pet scan shows "no evidence of active disease". I hope to copy Karenfizenbo who has continued to have "NEAD" over 2 years later! Gives me so much hope! We are here for you, while you get your treatment set up and dive into the "new normal".
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deanders: there is hope.
Please know all the emotions you're feeling are normal. You experience a roller coaster ride of feelings when you've first been diagnosed. It takes time to adjust to the new normal in your life. Take some deep breaths. Every day.
Like exbrnxgrl, I've been living with mbc for 9+ years. It may surprise you to know I have experienced some of the very best times of my life since my diagnosis, not because of mbc but in spite of it. Take things one day at a time. I stopped projecting myself years off into the future and learned to live much more in the moment, for today.
I am glad this thread gives you hope. I remember being extremely scared to even click on the "stage iv only" link, so fearful of what I might find. Would it be all depressing, lots of moaning and gnashing of the teeth? Instead, I found women, one whose screen name was Chainsawz. And for some reason, that just struck me as fierce. Here was a woman with the same disease I was dealing with and she had this bad ass name that she used a Z in. And another wonderful woman's screen name was ILoveRVing. I thought, "what? this woman has mbc and she's out camping and glamping and enjoying the outdoors?" It was eye opening to know that I could start to construct a new chapter in my life, one that involved living with mbc but also how to move forward and continue having good times, memorable moments. I had to dig deep down to find something within me to help me take those first steps, and when I didn't or couldn't find it, I created it. You can do that too.
Best wishes to you.
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I teach college and this summer I ran an outreach/internship program for our student teachers where they taught science outreach classes over Zoom for K-5 for the local YMCA. It was fun, but we definitely had some moments of loss of control. It's kind of hard to get “don't throw the stuff in the kit at your sister" across on Zoom.
As for my regular classes, I really miss the connection with the students. In spring, I co-taught a class of 192 students on Zoom. I didn't feel like I knew any of the students.
Exbrnxgirl - it's so encouraging to see you still teaching. With the diagnosis this summer, I was so discouraged that I might need to give up my job. I love to teach - although much more so in person
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lehrski,
I adore teaching too, but retirement is looming, unrelated to bc or Covid 19. I am 8 days in to the new school year and although distance learning is far better than the the emergency scramble in the spring, it has taken away the thing I love most; getting to know and form relationships with my students and having them form relationships with each other. I realize there is no other option for my county so I will make it as good an experience for students as possible but they are only 6. Sitting in their own homes watching some lady they have never met is very far from ideal. Also, in terms of learning and giving feedback to students, it’s not quite the same when they turn their work in online and I send typed comments back. The last two days this week were a bit better but there will be too many things that I won’t be able to give my first graders over an iPad screen
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I AM GETTING MY HAIR CUT ON WEDNESDAY!
So excited as it's been six months. The shaggy poodle look is getting old, though I do like it a bit longer so will keep some length. Now, the white hair is a whole 'nother story 😅
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Good for you Caryn. It’s a strange experience with all the PPE but enjoy it!
Re the white hair I decided after primary treatment ( age 43) to stop colouring mine as I quite liked the shade of white...theory being that although it initially aged me, after 10 years or so I’d hopefully still look around the same...as long as the face didn’t collapse too! Saved me a fortune in dye but I do need a good modern cut in order not to look too much like an old lady...I’m still only 55!
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Newbie here, who really appreciates this great thread and the inspiring ladies here.
I wanted to chime in regarding haircuts! I had mine cut a couple of weeks ago, also after waiting 6 months like exbrnxgrl. It is the first haircut since before my original diagnosis 3 years ago that feels like a normal flattering style that someone might actually choose to have. No thick sheepy texture post-chemo, no shaved patches, no bald patches, no comb-over, original texture delightfully restored. It feels great! There is still a substantial lumpy ridge of scar from my surgeries which is partly visible, but I don't care!
Even though I am enjoying my hair situation (and importantly, allowing myself to enjoy it), I keep in my mind the knowledge that this can change at any time. It's a weird position, to be present and enjoy something while maintaining a degree of detachment. My attitude toward my hair feels like a microcosm of living with MBC, at least where I'm at with it personally.
Funny thing is, I don't even like the haircut! Looks like a mushroom… but that's OK, just call me Toad.
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Welcome, Caillou (As in the children’s cartoon?) ,
I have very thick curly hair and I resemble poodle who desperately needs grooming. I do wear my hair natural but even a natural coif needs some attention. Can’t wait for tomorrow
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You will have to let us know how the haircut goes. I have an appointment in a week but I am very nervous about going in to a shop. I have been nowhere risky for six months. I haven’t reviewed your previous posts. Will you wear a mask?
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DivineMrsM and exbrnxgrl, I am heartened reading your posts just above. I was just Dx stage IV two months ago. I have been taking Letrozole so far. I have a ton of dental work to finish. I went for the exam, and the tech had her mask below her nose, which freaked me the heck out. I have decided to change dentists after waiting it out for two weeks to make sure I was in the clear. I have a dental phobia and am still in a mild state of shock, so stepping back and taking a breather has helped. I had gone 9 years without recurrence. I thought I was in the clear. Now I have diffuse bone mets only. It sounds like they are distributed throughout, however. I was in pain with a broken rib at first, but now I am tolerating the Letrozole pretty well and Tylenol helps any pain I am feeling. I am feeling my way through this thing and very much appreciate reading everyone's posts. GiGi
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Caillou, you made me laugh 😂
I wonder if the hair and haircut thing, as some have already suggested, is an example of how we are doing generally? I get the dentist thing too as had my very late check up last week with him wearing visor, mask and full PPE kit... I like my gadget man dentist, he takes my taking the 'michael' out of him very well.... -
GiGi, about the tech wearing the mask below the nose. When I first encountered a medical desk person with her mask around her neck instead of her face, I was too uncomfortable to speak up. Then it happened with an OR prep nurse where I eventually ventured to say something, but did not protect myself enough. But I'm over that now! I actually reported the two incidents to the patient advocate, who is a nurse and completely agreed with me that these incidents must be addressed. She and my counselor validated me. Now I speak up. I say to the person who is putting me and herself/himself at risk, “Your mask has slipped!" Which allows them to save face (ha, no pun intended) but cues them to put the damn mask on properly. I actually requested, nicely, that the dentist change gloves and refrain from lowering her mask at all. (Karen, your dentist is great.) Today the person who questioned me in the dermatology exam room (LVN?) wanted me to take my mask off for her. I told her I would rather not, as her mask was homemade and not a proper surgical mask. (And why would I take any risk for her? She is not going to give me the advice I need from the doctor.) She condescendingly told me, “Masks don't protect you from the virus." So I educated her. Then she said that the doctor did not have a surgical mask. I told her I was sure he had one somewhere, and if he could wear it while speaking with me that would be great. Which he did. Yeah, watch out people, a stage iv diagnosis only encourages the tiger in me to come out.
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Karen, as every civilian knows, the state of our hair (bald or not) exactly correlates with how we are and whether we have a serious case of cancer or not! So what does it tell about us if we have had a haircut recently? I need to clarify because my chic short do from early March has morphed into something unidentifiable.
Caillou, you said “...to be present and enjoy something while maintaining a degree of detachment. My attitude toward my hair feels like a microcosm of living with MBC..." Wow, I really relate to that. Having lost my hair twice in the last six years, I enjoy having normal hair when I have it, but always know I may lose it again. As with everything in my life and my life itself.
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Well said Shetland! I think it says that we have enough self worth to be bothered about the hair! My husband goes on about my ‘ lotions and potions’ as he calls my basic skincare regime ( I use Liz Earle). I tell him that every day is a spa day now that I’m retired and when the time comes when I stop caring about myself to be properly worried. That goes for the yoga I practise now too.... which is not a pretty sight, but I do enjoy it!
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I'm new here. I was dx 3 weeks ago with liver mets after an awful couple months of shortness of breath that got so severe I was hospitalized twice in Aug and on an oxygen machine most of Sept. One of my lung scans caught a bit of my liver & my oncologist said she wanted a scan of it because it didn't look right to her, which led to a biopsy. So my shortness of breath was secondary to the inflammation of my liver on top of it being so enlarged, she's sure it's pressing on my diaphragm. They think the mets happened before my 3mm malignant calcification was removed Oct 2016--so 4 years without knowing!
Yesterday I got a nuclear bone scan and this morning woke up to the news I have mets in my bones. Since my husband and kids are doing their conference calls and zooms, I just spent 10 minutes crying and decided to see what other women are doing in my situation. I am so hopeful after reading so many pages of this thread. I see a couple names I recognize from my Xeloda forum. I appreciate all the encouragement you ladies provide.
Anyone else liver AND bone mets? I'm still so shaken.
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1st few weeks are an awful shock and overwhelming. Your story sounds similar. Last summer I hiked 5-10 miles a couple of times a week. Suddenly I was out of breath hiking and lifting weights. Eventually ended up in ER unable to breathe. Thoracentesis took 2 liters fluid off a lung. Fluid showed MBC. CT lit up with small tumors up and down spine, lungs and liver. 2 different treatments I was unable to tolerate. Took 3months to get healed enough MO could recommend 3rd attempt. She didn't have a new plan, so got 2nd opinion. New MO had different protocols. Seems to be greatly shrinking tumors and I'm into a routine, although energy and stamina are still VERY low. I've never known anyone w/MBC. These forums have helped me realize others are going through similar (some easier, some harder) issues.
Each case is unique. Your treatment may sail smoothly, you may have tolerance issues, you may switch Drs. My MO had me speak w/nutritionist briefly, very helpful. Also I started anti-depressant which has helped. So there maybe alot going on other than just treatment drugs. Keep notes of things that affect your life style and bring them up w/MO to see if there is anything to help. Be prepared for some rough days (waking up crying is really maddening, but happens). "What You Wish Your Friends Knew" forum may provide some insight. This thing isn't just physical, it's mental too and affects your whole family. If you find comfort or info in these forums, keep reading. Some people want more details than others. You, do you. And as you can, do what brings you enjoyment.
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Hi Pamela,
Welcome but sorry you’ve joined us. I would venture to guess that there are more than a few members on bco with both liver and bone mets. Go to the stage IV forum and check out threads that are specific to your situation. This, in my opinion, is not the best thread for discussing the medical aspects of bc in any detail. It is mostly intended for discussion of how normal our lives can be despite mbc. I hope you find inspiration from our stories and how long some of us have lived. I just hit the nine year mark. Wishing you all the best.
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Pamela, join us over at the "How are people doing with liver mets?" thread.
Last week I enjoyed a fall leaf tour and lunch with BFF, and then breakfast out with another friend two days later. Seems I'm mostly out and about to eat these days! Nice to get out a bit though for more than dr./scan appts.
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Thank you for all the encouragement. I have accepted what's going on and forging on! I welcome reading about positive life experiences and making connections.
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I think we all have to arrive at some level of acceptance, though each in their own time. Stage IV is welcomed by no one, but don’t put your foot in the grave before you have to
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Pamela23 - Welcome. I'm sorry that anyone has to meet here but it's a great group of people. I saw your post on the bone mets thread and I am over there also. Definitely find your people, there are more than you would expect that are dealing with very similar situations. I come here to find my positivity and encouragement. I am newer to MBC as well and this thread has encouraged me when I hear great stories from folks about going on trips and having a great day doing activities they love or just getting good news on scans. Sometimes I come here to remind myself that life moves on and my life is not just my diagnosis. I need that refocus sometimes and it's been a great resource for that.
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Bliss58-- Oh my gosh those colors are amazing! I'm in Southern Oregon and we are just starting to get some good color to the trees here. It's unseasonably warm still but cooling off for some great weather to be outdoors in.
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Emac, the colors in my area weren't so vibrant this year with an early cold snap and had to take a drive to another county to see these. Are there fires near you? We have fires here in Colorado, but nothing like you're having in the Northwest and California. Enjoy your colors!
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Our colors here are faded too. It's been unseasonably hot and dry. In terms of fire, yes, Medford borders Phoenix/Talent, OR and they were devastated by fire this year. The unofficial count is 300 people may have died, they are still working on that number and 2300+ homes and businesses were lost. I live about 7 miles from there. My brother and his family live there and their home was saved but everything around them is now ash. They stayed with me for about a week while the area was cleared for safety and the electrical was restored. We all feel very fortunate to have been spared but it's the worst fire our valley has seen in decades and it is causing a housing crisis locally. If there is a silver lining it is that our valley really mobilized and came together to help those affected. It's been a month and people are starting the process of cleaning and deciding whether or not to rebuild. My family has put a definite focus on being grateful and staying positive. I'm going to go up and get a picture of the little farmhouse near me. They just set out their pumpkins in a display around one of their vintage trucks. I'll post a picture when I get it.
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Emac, OMG! That is absolutely devastating. I had no idea it was that awful there; possibly 300 dead? That is just beyond words. So glad your family is safe and their home was spared, but all around in ash is terrible still.
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Emac, the fires have been so devastating. As Bliss said, I am relieved you and your family are ok but I am so sad about the loss of life and homes in the Talent/Phoenix Oregon area as well as damage to the Detroit Lake area near Salem. I grew up in the SF area of California and my husband and I moved to the Portland area in the early 1990's and started our family. We have driven up and down highway 5 for years and love Medford. We were on a road trip in the end of August and visited Crater Lake. Heading home we drove towards Roseburg and had an amazing dinner at the Steamboat Inn on the North Umpqua on September 5th. It was hard to believe that a few days later that area was evacuated due to fire.
Bliss58 - you live in a beautiful area - that photo is stunning!
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