Life does not end with a stage IV diagnosis (really!)
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Happy birthday Caryn!
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I echo the birthday wishes, Caryn. First graders are so much fun. My former boss used to give me two Friday mornings a month off years ago to let me volunteer in my daughter's classroom. I was able to volunteer for about three years. It was fun helping the kids with their reading and math.
Bjsmiller: What day is your birthday in December? I'll be 58 on December 10. Hoping I'll make it to 60, too. Love the aspens!
DivineMrsM: Stuffed toys have a way of "finding" me, so I guess that's what I collect. I couldn't bring myself to toss out all my daughter's Teletubbies, Bananas in Pajamas and her Build-A-Bear Lou Seal (he's the SF Giants' Mascot). So now their mine, ha ha! Now, I'm collecting stuffed Olaf's, much to my 22 year old daughter's disappointment...she absolutely HATES Frozen.
Shutterbug: I don't get depressed in autumn; winter does it for me. I have SAD (seasonal affective disorder) because of the shorter days and long nights. Now that I have cancer, I hope it doesn't get worse.
Enjoy the autumn colors, ladies!
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Happy Birthday Caryn!!! I hope it's a great one
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Speaking of stuffed toys, here are my "Three Amigos." DH brought me back the Minion Stuart from his trip to Florida, Lou Seal (in Giants jersey) was confiscated from my college-aged daughter, and I bought Olaf from Build-A-Bear workshop for myself. My family didn't have much money when we were growing up (five kids, one income), so I didn't get a lot of toys - stuffed or otherwise. Parents bought us "practical" gifts for Xmas, like clothes, and now I'm making up for it.
This may sound stupid (and juvenile, but I don't care...); when my back and other mets start hurting, I hold one of these little guys when I'm in the recliner, and I actually feel just a little bit better. Unfortunately, I can't pick up my English Bulldog and put her on my lap because it would be too hard on my back, with its five compression fractures, etc.
Lita
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Lita, it is so sweet that your stuffed critters comfort you and I don't find it juvenile at all.
It's been 5 1/2 years since I've been dealing with mbc and stable so far. At this point it almost seems surreal. What I've noticed since the diagnosis are the different phases I go through. Towards the end of the first year, I became obsessed with playing Plants vs Zombies on my husband's iPad (didn't have my own yet). It was sweet release for all my emotions, I got absorbed in it and allowed myself to be addicted for at least three solid months. Beat the game numerous times. Then life got busier, and I moved on. A year later a second Plants V Zombies came out and I had no interest in it.
One summer I was obsessed with learning all I could about paraben free cosmetics, researched it, tossed my old stuff and searched for new, even getting a little make over at the cosmetics counter and buying many new products. It made me realize all the stuff we slather on our bodies every day......
Last summer, after several years of neglect, I found renewed interest with my flower beds, planting, mulching and moving and adding stuff, and enjoyed seeking out and visiting several botanical gardens. This year I tended the flowers but was not as passionate.
I seem to spend about three months or so delving into something new, learning what I can and then I start looking around to see what else I can get into. Now it's the coin collecting........
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I can't wait until I reach the part where I don't feel like I was given an immediate death sentence. I am only two months out from being diagnosed with the met I feared the most (brain). I also went through the treatment I feared the most for it (whole brain radiation). My current thinking always has me wishing I did not do the whole brain radiation for fear of later stage effects etc. I felt the RO did not cover these effects almost at all but I really cannot blame him since I had already looked it up when I was worried about being DX with a brain met.
My strategy for now is exercise since I am able to move my body. I also try to be grateful for any advantage I do have. Main ones being, no mets elsewhere in my body AND no other tumours than the 1 I had at DX. Surgery removed most of it, which was in the dura, not yet invaded the brain. Once little bit was left since was wrapped around a blood vessel I have to take responsibility for choosing the whole brain radiation(nothing else was offered due to having IBC), RO felt the aggressive approach would be best for an aggressive cancer. I was not disabled so I can keep exercising, building endurance and I will see how I will recover.
Since I cannot predict the future, I have to stop looking up forums where people have had horror stories with whole brain radiation and just follow my own situation. This is hard for me. If I cannot get beyond it, will have to get counseling since I cannot stay in despair 24/7.
I am hoping as time goes on, I can better accept my choice and the fear will move off more in the distance for me.
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Mara: It's great that you have so much mobility and no mets anywhere else. Try to stay positive. I have SO MANY mets, and I tell myself I probably may not be one of those MBC ladies who goes 4 or 5 years with Stage IV...but that's a bad attitude to have. Heck, who knows, I could go longer than I expect. It's not in my hands. It's what Mr. Cancer and God decide to do, so I can't project myself into an instant death scenario that I may not necessarily have (but I still feel like I've been given a death sentence). You did a brave thing in choosing whole brain radiation. I'd try not to go on websites where people have horror stories after brain radiation. That's not your situation for now, as you have said. I recommend getting counseling immediately instead of later. If not counseling, finding a face-to-face real-time support group may help. Those of us w/Stage IV feel so isolated at times. Stage I and II gals are pretty much given a full bill of health and decades to live after their surgery, chemo and/or radiation, but WE have to live with our Stage IV for whatever time we have left. Sending encouragement your way!
Divine: I would love to be able to garden again, but with my extensive bone mets and compression fractures, I can't even bend over and tie my shoes! Enjoy all your new experiences. They help take our minds off our situations.
Warm wishes,
Lita
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hi, all,
How do you add photos?
Thanks
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There is an icon in the banner just above where we add text...its of a mountain scene, hit that and it takes you through prompts to upload a photo from your library or take a photo and unload. Good luck
Amy
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Thanks Lita, I think I will look into a support group. There are good ones where I live.
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thanks, Amy . Wanted to add a shot of my two purr buckets,
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Kitty stretchies!!
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Sattipearl,
Though I'm direly allergic, your kitties are cute! Just noticed that you're in San Jose. I am too. Hope you're enjoying the cool down in our weather and breathing easy despite the smoky air from the Loma fire
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Forgive my rudeness for not thanking everyone for the birthday wishes. A simple low key family celebration was just perfect. My dd's asked if I wanted a party and I was mortified! Although it is not obvious, I still retain a bit of the very shy child I once was, so a party was out. 60 has been good so far 🍾🍾🍾🍰🍰
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So cute Sattipearl! Here are my two lovebugs.
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Hi to all! I didn't know where else to post. I was diagnosed Stage IV on Wednesday 9/28. I was 3C a year ago. I finished treatment and wanted a scan. They said no. The PA called two weeks later to set a scan because of bad tumor markers. Then I didn't want the scans so much...lol. I have new nodules in my lung they are watching and cancerous paratracheal nodes right at the aorta. Not a good thing. I wrote a long post and lost it. Waving to you all!
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Hi fraidycat,
Welcome, but sorry you have tojoin us. I am the op for this thread and my intention when starting it was to let women (and a few men) know that a stage IV dx is not an immediate death sentence and that life goes only fairly normally for some, though not all of us. Why this is, remains the million dollar question. Check out all of the stage IV threads, especially the one for lung mets, for tx questions and support from those in similar situations. Of course, to read about how life goes on, both good and bad, you are always welcome here. Take care.
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Happy 60th Caryn! I am loving the fall colors too up here in Lake Tahoe but like Lita do not want the cold coming too soon either. Indian Summer is my wish...We are getting the smoke too from Santa Cruz! Lita, I agree about taking out the good stuff. Lately I've been wearing ALL of my clothes to work instead of saving the good stuff for "occassions". Some of them would of ended up being like new after 10 years otherwise. I must say it perks me up to feel well groomed and fashionable and not care about "wearing things out".
Barbara, The pictures are gorgeous!
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Artista keep rocking those clothes!
Rain is supposed to be headed our way. Hopefully it will help with the Loma fire.
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Fraidycat, glad you found us. And sorry you had to...great group of folks here, and a space to say the unsayable, as well as share good news.
Exbrnxgrl, am loving the new fall weather. Our backyard is a nice haven, and I'm slowly clearing out the spent summer plants. It's enclosed so the kitties can be outside safely. They love it too.
Last Sunday was the 4th anniversary of being diagnosed with the stage IV. Almost 10 years since initial barely stage I diagnosis. While I'm on the downward slide, I DID think stage IV meant dead soon. It did not. Until July 2015, I lived a fairly normal life after the initial 9 months of chemo.
Next Sunday, I start a week on the beach in a beautiful house at Stinson Beach, a gift from friends.
Much love to you all...
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Rain!!!! I am always so excited by the first rain of the season. I have lived here for 28 years and used to think it was strange that people got excited about rain (it can rain any time of the year where I was raised). No I'm one of them
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Just read backwards on this thread and you all seem accepting and some of you are in the same space I'm currently in...grateful! I have been on a few other boards, and only have 4-5 "Favorite Topics". I don't want to be on boards that are overly negative or altruistic. Just one like this, that strike a balance between realism and optimism.
As a three year Stage IV, and previous Stage 1, I have had all kinds of good and bad days. But I feel like people sympathize just fine with me when I'm having a bad day, because "hey, what do you expect you have cancer". But I don't find people in life and sometimes on these boards, who are willing to celebrate with me when I'm doing good, or I'm looking at the silver lining. (Or they think I'm on drugs) LOL.
Even though I'm on continuous palliative chemo indefinitely, I am celebrating victories like learning how to manage the s/e of my tx, and the s/e of my s/e! I find peace in learning what my body is telling me AND ACCEPTING it, because I'm giving up the struggle to survive, and embracing thriving. I am doing better at not telling myself "you should be doing..." And that has been a hard struggle. I even (and this is hard) am accepting I couldn't be the kind of nurse I used to be, and am accepting the loss of my calling. I share all that in the spirit of how this thread was started, a place to celebrate normalcy in the midst of Stage IV. I'm "finding my new normal".
For women newly diagnosed, don't berate the time you spend facing your death. It has a purpose. For me, it drove me get my affairs in order and safe harbor my kids from well meaning but scary relatives & friends. But after awhile I realized I wasn't dying of cancer, I was LIVING WITH cancer. And I decided to live well. I've had some really good memories made over the last 3 + years. I'm glad I moved on to living with cancer. Now, when I go to the multitude of Doctor appointments, I bring my victories with me, not just my "sloshing in the trenches" stories. Oh I have no problem reliving the injustices of this disease, but today I am celebrating, hoping that if I celebrate now, then on my bad days, I remember "Hey, it may get better".
Thank you Sisters-for sharing your ups AND downs, as we are all in similar boats. I tend to think of these Boards as a place to "raft up together". When you are sailing, and you see other boaters, you raft up as a means to seek safety together, share stories, eat, share music, and socialize. It makes the long quiet solo passages easier. God bless.
Shelley
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Every year is a little different for me. Last year at this time, I was actually somewhat depressed when the weather got cooler because I'd enjoyed the summer and being outside in mild temps so very much. This year, I'm taking the season change in stride and welcome it, even tho I know winter follows.
Caryn, I lived a year in California when I was 19, nine months of sun and then one day it rained. I was so excited, so I kind of know what you mean. Except then we had rain for like the next three months!
Satti, enjoy the beach. Artist, enjoy those clothes. Shelley, you are right to frame it as "living" with this disease.
Love the kitty photos
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Shelly,
I love the expression."raft up together." It's especially appropriate for us!
Tina
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To Mara5156, my best friend has breast to brain mets; she did WBR in 11/2015 and has had 0 side effects from WBR. I hope that by sharing her story with you it eases any worry you may have about WBR - I am sure you weren't given much time to "think" through your options either as it is a dire matter to have breast mets to brain, particularly when you are NED from neck down.
All the best to you! You are in my thoughts for continued good health.
KTF
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Shelly,
Love your post. I have felt some of what you expressed, even here on bco. That aside, yes, for some of us there is a way to live well with stage IV bc. Doing so does not deny or diminish the pain and suffering that bc brings to so many, nor does it make those of us who are doing well naive to the fact that our ride will not last forever.
Whether I live for 10 more days or 10 more years, I hope to find some joy each and every one of those days. Rosh Hashonah , the Jewish new year, is upon us. I wish you all a happy, sweet new year, Shana Tova!
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Caryn, thank you for your welcome and explanatiion. Happy Rosh Hashanah!
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Thanks so much KTF, I appreciate you letting me know. It is definitely something that must be dealt with quickly and am glad to hear your friend has not had any bad effects. Thanks again. There aren't enough good news stories available, just the horrible ones. I definitely appreciate you taking time out to let me know this. It does encourage me a lot. I am getting stronger as we speak which is pretty good after only a week and plan to keep pushing forward. Just have to wait for appointment with MO to see how we keep me NED below the neck going forward.
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Shelley, your wonderful post was truly inspiring!
As a newly dx'd Stage IV'er from the get go, I'm still struggling with "accepting" all that Stage IV is. I actually had a fairly decent weekend for a change (of course, this was my "off" Xeloda week...tomorrow I start Cycle 7). Some dear friends came over yesterday afternoon and cooked a wonderful dinner for my husband and me. I pushed thru my ever-present fatigue and tidied up the house a bit in anticipation. Today I went shopping by myself. I love those times in my car because I almost feel "normal" again while driving. So my mind wasn't on "Mr. Cancer" quite as much these past couple of days. I even told my friends that I really didn't want to discuss the latest developments between me and Mr. Cancer. We left him on porch, outside the front door.
I agree with you 100%..."I don't want to be on boards that are overly negative or altruistic. Just one like this, that strike a balance between realism and optimism."
I prefer to hear people's success stories because it gives me hope. Yes, there will indeed be bad days, and I've had more than a few of them...dealing with the pain of my spinal mets and the inconveniences of my SEs, but I'm assiduously trying to live in the "now," and take it one day at a time. As Mr. Cancer gets more deeply entrenched in my body, I know that things will eventually get worse, so I must enjoy these days...back pain and all, while I can.
I must press myself to stop framing my new reality as "dying from cancer," but rather "living IN SPITE of cancer."
As painful as it was, over several days, I put up my favorite autumn decorations and garlands so I can enjoy them now because who knows where I'll be next year at this time. None of us knows precisely how much time we have left. [Heck, even those without cancer.] Constantly wallowing in despair over this disease isn't going to help any of us. It's wasted time. As the vermilion, gold, and burgundy leaves fall to the ground and shrivel, so will we when our time finally comes. So, these last brief months (or years) are our time to dazzle the world with our own glorious autumn colors before the wind snatches us up and carries us away.
Once again, thank you for your uplifting post.
Lita
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I forgot to add Shana Tova, everyone!
With Rosh Hashanah in mind, I'm dealing with my "new" reality as another year is upon us.
May it be a wonderful, healing year of NO more progression and knocking back Mr. Cancer for everyone here.
Lita
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