Ladies in their 30s?
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bad--so hard on our partners! Your post reminds me of a friend I have in Texas. And she did have a child through surrogacy. She has again had progression. New treatments begin. She is loving life with her son while at the same time hating life, the stage 4 part of it. This is hard stuff, especially for those who love us and want to fix it, but can't. They feel so helpless.
I'm sorry to hear about your brain mets. The word craniotomy sounds so scary to me. I hope it did the trick on those mets!
And very impressed that you returned to work. I understand that staying at home can be boring. I was a school counselor when diagnosed stage 4. I have not been back to work and I'm on ssdi. Bored? Yes. But I know myself and there is no way I could be fully present with kids, like they deserve. Also, the fatigue and depression has been completely debilitating. Only within the last few months have I gotten to a place where I feel I can give back and do something constructive.
Take care of yourself! Best of luck
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K - I imagine the decision to work is much different if you have kids. With no kids at home and my husband working frequently out of town, I wouldn't have much positive distractions if I didn't have work. Plus, an extra salary helps us save for those bucket list trips and those freezer babies!
Plus, even though I have the scary brain mets boogeyman, my mets are quite limited. The two biggies were easily removed and I'm left with a probable teeny tiny one that will hopefully be eradicated by my current chemo. I'm actually pretty close to NED and am really hoping I get there!
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Ned sounds great! I hope you get there too!!
And speaking of those bucket list trips--
For a couples retreat check out Little Pink Houses of Hope! My husband and I had an amazing week in St. John (USVI)! Everything paid for except travel.
Little Pink also has retreats for the whole family, if (when) kids are involved.
Little Pink is a non-profit for breast cancer only. Any stage. Seems they try to serve stage 4 and women in treatment most recently.
Also, check out Inheritance of Hope. All expense paid trip to either Orlando or NYC. Counseling sessions included as well as amazing fun for the family.
IOH is a non-profit benefiting families who have a parent with a life-threatening illness.
Feel free to pm me with questions. Both of these organizations are amazing! Talk about making memories
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well, disgnosed as a lady in my 30s, I am officially a lady in my 40s
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KJones, have you done the IOH trip? I keep my eye on their trips but always wonder about how my kids would feel about the sessions...don't want to create worry that's not there.
Bad - I teach second grade and prefer to at this point but I do wish life could slow down a bit. Right now, I need to grade some papers (end of grading period...sigh) but wish I had a cancer-perk card to just read and go to bed instead. How bout I get to it instead of stalling? Spring break is coming soon.
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the count down is on to spring break!!!! Yay! You can do it!
Yes I have been on the IOH retreat. May 2013 in Orlando. One of my biggest fears was that my son (9 at the time) would find out I have a terminal illness and all that that means. I asked specifically about this. And the answer is no they don't say anything like that. The group time for the kids is counseling based, but they perceive it much more as play. I tend to think my son is pretty darn smart (at least book smart) and he really had no clue. He is kind of slow on picking up social cues so maybe that worked in my favor? Idk.
I have never heard anything but completely overwhelmingly positive feedback. From the moment you arrive, your family will be showered with love and support unlike anything you have ever experienced! I continue to keep up with the families from our trip via Facebook. It's hard. Making friends and meaningful relationships with people who have a terminal diagnosis is hard. Just like it is on here. Still a little different because of the physical bond that is made? For me at least.
Another concern I had was--how "sick" do the other parents look? I had just finished treatment so I was fairly bald still. There were a couple people bald too. Usually wearing a hat. There was a lady in a wheelchair. A man using a cane. A man wearing a "snow cap" as his daughter called it
(it is actually part of a trial he is STILL in for glioblastoma, sending shocks to interrupt the growth of tumors)! My son didn't skip a beat. Besides seeing the other parents on the bus or at dinner, that could be the only interactions if that's the way you want it. My daughter was 2 at the time so she knew nothing, obviously.I highly recommend this retreat! You won't be sorry! (Sorry for rambling
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I am 39 years old and diagnosed 12/17/2015 with stage 3 IBC/IDC, grade 3, triple negative. Further, test confirmed that I had mets to the lungs and I was told I was stage 4 on 01/08/2016. I started weekly Taxol on 01/11 and I am on my 10th week of Taxol. I have a 15 year old son and a 18 year old daughter, married for 21 years. Taxol has been kind to me with minimal side effects. My spirits are high and I am just taking it one day at a time. I will be 40 at the end of April.
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KJones, I do want to take a trip with IOH at some point. Sounds like they are wise to the situation and keep it light for the kids. We're got vacations planned for this summer but for our next trip it would be great to have all expenses paid. My husband has always been the stay-at-home parent so I do worry about whether to save or vacation since my family's financial future gets a bit dicey after I'm gone...which I do hope won't be for a very long time but you know. Grrrrrr! Stupid cancer, stupid cancer, stupid cancer!
Hi, Geeper! I'll be 39 in June and will be married 19 years. It is rare I meet someone who got married at a younger age than I did...but we knew what we were doing didn't we!
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I have been getting a lot of the "you don't look sick" comments. That is when I just tell them, i am not sick, not yet. Yes I have cancer, and yes I will always have cancer, for the rest of my life, but I am going to work really hard on making that "rest of my life" be as long as possible. So I will take it as a good thing for now, and as a chance to educate a bit. I am still learning the whole process and I am still trying to come to grips with it all, but for now, I will take the you don't look sick and run with it.
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Welcome, Geeper. I, too, am 39. I hope these boards serve as a positive outlet and source of support for you. Congrats on being married for 21 years! Impressive. Kaayborg, 18 is also very impressive!
Phrogger, the whole "you don't look sick" comment is an odd one. The intentions are not always clear - a compliment? doubt? I just can't imagine ever saying that to someone. When I have received that in the past, I just responded "Good!" Not many know about my current Stage 4 dx so I haven't heard that comment in a while.
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Most people know my diagnosis, so I think it is being said a compliment and maybe as encouragement. I really think many assume I will just fall over soon, and they don't understand the whole process or that it could be years and years until I am truly sick or it could be months until things really progress, we just don't know.
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I'm not sure how I missed this thread until now. I think I really need you all! My name is Rachel and I was diagnosed stage IV de novo in August after spinal compression fractures. My mets are bone only, but extremely widespread. I finished 6 rounds of taxorere in December, coupled with herceptin and Perjeta and have had a very good response, even better since adding tamoxifen. My kids are 11 and 8 and the psychological piece is very hard, but you all already know that. Looking forward to getting to know each of you.
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Hi. My name is Stephanie. I was diagnosed with stage 2b or 3 at age 31. Just recently, I discovered I had bone mets-the whole spine, ribs, leg bone, basically every bone in my body has mets. I am now 34 years old. It really sucks to realize that I will never ever have kids. We did try a little bit after my first diagnosis, but nothing ever did happen, so I guess it was meant to be.
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Welcome bluefrog and steffieks. I hate that there are so many of us joining this thread lately 😔
But you will find amazing ladies that are knowledgeable and can sympathize with dealing with iv at a young age.
But I do read other threads where people are dealing with this for a long time and even my onc has stated 10+ years is no longer out of the question with all the new meds coming along!
Hoping we all get to chat on this until a cure is found!0 -
Dear Stephanie, Welcome to the community. We are so sorry that you had to join us for this reason, but glad you did! We know that you'll get tons of support and understanding here, so please stay connected and keep us posted.
Best wishes,
The Mods
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kaayborg, you're right we do have a lot in common. I'm still doing pretty well. Hope you are too. I was wondering g if you have had any scans yet and if the treatments are working
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Dreichlin, next scans are April 7. I've lost track about what I've posted on this thread and no time to reread so sorry if I repeat. This will be my 4th scheduled scan (had an extra thrown in there once when I got scared about nothing). I had massive reduction on the first (10cm tumors turned to 5 and 6 ish), stable on the second, more reduction on the third (down to 3 and 4ish cm). Adding a brain MRI this time as I've developed these facial sparks of sorts (like a fly quickly lands very lightly and flies off) and have some headaches. However, my worry about this has faded as the feeling faded during my added recovery week (do two weeks on two weeks off now), so I'm hoping its more treatment related not brain mets and that my general feelings of fading mental competency are indeed just chemo brain!
Rachel and Stephanie, glad you found us! And, continually sad that so many young ladies find themselves here. I want both cure and cause. There must be something that is causing this in so many young and otherwise healthy people. Forgot who posted this but also love hearing those words of hope from your doc...10+ years not being out of the question. I am increasingly more hopeful as time goes by. I felt I was looking at possible months at the get-go but feeling confident that years are mine to enjoy with little taken for granted now.
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hi kayborg! Your treatments had to be delayed due to low platelets right? I was searching for "symptoms of low platelets in blood" and headaches were mentioned as a symptom there. I had this tingly prichly feeling on my face after taxol 2 years ago..i think chemo affects our facial nerves as well..i get extreme headaches and jaw pain for a few days after carboplatin and taxol infusion. Neuslasta(sp) shots also give me headaches. I'm sure brain scan will come back clear.
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Kaayborg, praying for good results.
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I'm back from a lovely spring break in SC visiting family. Not so excited to return to work and responsibility but as a teacher I am blessed to be able to say, just 8 more weeks to go! Very excited. Last summer I seriously wasn't so sure I'd even have this upcoming summer. Now it feels strange to think I doubted it so but one never knows. At any rate, I feel I'm in a much better place as far as grappling with the realities of this disease goes.
Geeper, I so appreciate your care and prayers. I always try to guess my results. I am usually wrong but here I go anyway. I am thinking that I'll be stable and nothing shown on the brain MRI. Secretly, I'd go for the surprise of further reductions. If there's progression I think it will be small scale and my doctor will still have me continue on gem/carbo for a while longer. We'll see. I feel calm about the whole thing but I never can wait to find out.
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Theziz, what were your scan results? Thinking of you.
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Hi all
Just checking in with everyone. Hope everyone is feeling good and having great response to treatment.
I should be excited spring is on its way so is april vacation with the kids. But I find myself in tears every time I'm alone.. Any tips on how to not continue to break down when I'm alone. I just started seeing a counselor.
Thanks in advance
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Bosco, I am so sorry. It just breaks my heart to read your post. I know right where you are and while I'm not there at the moment, I know it won't have been the last time tears find me when I'm alone with my thoughts. I'm not sure what helps really but here are a few thoughts that I think may have helped me. 1)time 2)information and a plan for what's next and next 3)letting it all out no holds barred...I think I held on to the quiet drip, drip tears too long at first 4)sharing honestly with someone close to me 5)a plan for what to do when I feel glum, especially helpful when I identified a pattern and I could kind of expect when the gloom would hit. Parts of my plan include: 1)find someone else who needs help and help them, 2)move! go for a walk, ride a bike, 3)self talk...I have different phrases I come across and write down. This week I found, "Stop thinking about shit that ain't happenin'!" I think I said it to myself at least 3 times today and it was a good day. 4)Lie to yourself when needed to get through the day. "No, I feel just fine. Fantastic!" But be sure to do #3 from the first list to keep balanced and healthy.
I also find a lot of comfort in my faith and read lots of books by Anne Lamott early in my dx. She's funny, honest, and lost her best friend to cancer. I like her prayer, "Help!" That's it. Just "Help" so I try that too. There's also "Thanks" and "Wow"...also important.
I'm thinking of you Bosco and praying peace for you when alone and always.
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Bosco, this is still very new for you. Breaking down when you are alone is a not a bad thing. In fact, it is quite therapeutic. We all have to allow ourselves to grieve properly. One can't really push the emotions aside - they will fester and dig in their roots if you try. The feelings of sadness, shock and all the other emotions will improve if you don't fight them and let them come when they do. It takes time. I cried alone a lot in the beginning. And still do sometimes.
Kaayborg, you have some good recommendations. I like the quote you found this week. I always tell myself "don't cry over milk that has not yet spilled". Similar theme. Love the simple prayers too! Sometimes, I am too tired to complete the prayers I would like to do. In those cases, a brief prayer like "help" will do!
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I am 3 1/2 years into this thing. This January is the first time I have felt more sane. Got my stuff together. Slow learner maybe? I know I got stuck in my grief and couldn't find my way out. The things I think helped some 1. Drugs! Depression drugs anxiety drugs and Ritalin to get my butt up and moving! 2. Telling my "story" over and over again. I had a traumatic experience back in 2001. I held on to that fear/anger for 5 years. And one day I didn't have to talk about it. I was done. Nothing left to say. Not sure if this makes sense, but I see it as telling your story as many times as needed until you feel heard. And really great advice from the two previous posts! I'll be thinking of you
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Hi ladies!
I haven't checked in a while. I just celebrated my 37th birthday on April 5th! So glad I was blessed to see it! Looking forward to seeing my 38th. I had a PET Scan done on March 28th that came back NEAD, which was the best birthday gift. I pray and hope that you all are well and in good spirits!
Monika
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Monika that is awesome. What a great birthday present.
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Monika, so happy for you! On to many, many more great scans and great birthdays!
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Good scan results and I pretty much nailed the prediction this time...brain looked good, slight reduction in tumor size (2-3mm). Gem/carbo and I are trucking on.
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I was diagnosed at 31...stage 4 right away! It's some real bs isn't it! I have a 6 month old
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