Life does not end with a stage IV diagnosis (really!)
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Caryn, sorry to hear of the losing weight and difficulty eating; best wishes to you wth the thyroid biopsy. Hope all goes as smoothly as possible with that.
The photo of Frankie and Miles could not be cuter!!! They are adorable.
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I was just diagnosed with a brain met about a week ago. Was having what I thought was vertigo off and on/felt nauseous since may. I was blaming Herceptin since I had 16/18 infusions. After one of my "vertigo" episodes, I went to emergency dept and they finally scanned my head. It was an 8cm by 3cm brain tumour. Later MRI revealed no other lesions yet and the tumour is in the dura. Plan for now is remove tumour and after that will check on how to approach radiation etc etc etc. Dr will biopsy but is almost certain it was there from when my breast cancer was found. Craniotomy will be done Aug 12 and I will go from there. I assume then radiation onc etc after biopsy and more visits to my cancer clinic.
Next steps I am assuming after surgery is go over my other scan results to see if other mets are present though not to concerned.
What I am trying really hard to do is find the good things that are working in my favour since obviously brain mets sucks and was my biggest fear to have it spread to the brain.
1. I still have a VERY strong body. While in hospital for 4 days, I was still able to walk like crazy round the halls because the steroids assisted taking down the swelling and other than the tumour I do not have any other symptoms.
2. I did not start immediately out with more brain mets. I am sure more will come but like that for now it was just the one and is not in my brain yet.
3. Though I am still scared, I have been not only lurking in the Stage IV/metastatic wing since I joined here, have a lot of good info from you guys that helps me prepare for my treatment and the fact it will be longterm. I also can check Brain mets sister forum for questions to ask onc as well. I feel more knowledgeable and know my limits when it comes to immediate treatment as well.
4. It helps me be in the drivers seat when it comes to what I will and won't hear from the Dr. In other words, I don't want a prognosis. ie You have this amount of time left. For me, that would just have me waiting to die. I am getting things in order since it would be stupid not to but I am not going to be told how long left because it does not do any good. If treatment is working, great. If I am out of hospital and able to do things that is all I need to know.
5. Finally, although it may NOT seem like a good thing, I never completely finished first round of treatment so am still used to visiting my Cancer clinic and am honestly NOT worried about any other mets. Would be nice if did not have any at this time but who knows. If I do, they have not affected me yet.
In the mean time, I hate this but will try not to live every day thinking I am going to die and enjoy what I like to do as much as possible. I have not needed to get anti-anxiety yet but will if must. For sleep, I use sleep music I got off youtube last year and it works for me. Though a lot of you don't know me, I feel like I know a lot of you from here and you have all been through more ups and downs than me. I am sure as time goes on I will lean on you and can hopefully help others in time too.
Sorry for the long post. Have a good one.
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Mara: welcome. As you know, this is a tremendous group and many of us are out leading very active lives. But this is a soft space to fall whenever needed. It sounds like you are very self-aware and have great perspective. That will be a great asset to you. We are all here for you and I look forward to getting to know you. If I missed it, where are you being treated?
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Welcome Mara, Sorry about the new development but sounds like you have a good plan and attitude, 2 very important components. I would say that most of us agree, we do not want anyone's guess on how long we may be here. I am doing well until I am not, that all. I keep on doing a much as possible. I do not look forward to the day when I suddenly can't do certain things but try not to dwell on that. Everyone's life plays out the way it is going to, might as well grab the good! Best wishes on all the upcoming tests.
Caryn, like the Staples commercial sings, "It's the most wonderful time of the year!". Back to School.....LOL! My summer is over is 1 1/2 weeks. I hope you get your thyroid issues settled quickly. Your grandkids are precious! I love the sunglasses too!
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Bluefrog I am in London, Ontario, Canada. We do have a very good cancer clinic which I am fortunate to be 10 mins from. I am just impatient to get the tumour out and hear what comes next but am trying to pace myself. One step at a time. Steroids make me jump about 5 steps ahead but am getting used to slowing down my thoughts.
I still do what I can physically which is pretty easy because pre diagnosis, I was only still getting Herceptin so in reality, only have the steroids which do give good energy for exercise etc. I know am fortunate to be able to exercise and will use this as much as I can while still being smart about it.
I hate the DX but am glad to finally have the wealth of knowledge you guys actually gave me by following. I will definitely be around and thanks again.
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Mara - I'm so sorry you are joining us on the Stage IV forum, but you are certainly are level-headed and have a great attitude going into this. Please keep us updated on your treatment. Do you know if you will you be staying on Herceptin as well?
I've actually been through London Ontario on our way to Stratford a few years ago. We stayed in a lovely B&B in St. Mary's that had llamas!
Tina - thanks for the swamp tour tip...it has been added to my growing Pinterest board.
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Caryn -hope the biopsy goes well. Hate that you are having to go through that, but the new pic is adorable ! I'm heading to my brother's to meet my new nephew now & can't wait to get to love on him
Mara - sorry you've had to join us but welcome. I hope you will feel a lot of support from what you read in the stage iv area
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Hi Shutterbug. Not sure if am NED below the head. I have a medical onc app't tomorrow morning to go over CT scan results. I hope so as it turns out the Herceptin was not causing my issues. I will be curious to see how this will all go together. I am given to understand from some of the girls on the Brain Mets that I will not have radiation til my craniotomy heals anyway which is happening Friday. I almost think that I am NED below the head just because the MO called me and offered I could wait to see her til Sept which would seem odd if there were other mets found. I don't have any other issues except the brain but will see. To be honest, the brain is what scares me the most but I must have patience and not be 5 steps ahead. I have to let them get in, remove the tumour and go from there once biopsied etc. I haven't heard of the B&B with llamas. That is really cool.
nbnotes, I do feel the support from you guys. I have long lurked because I always felt that my cancer would come back. I also surprisingly am glad that I did not finish first round of treatment because it would have been even harder to have to go back to my cancer centre if I had some time off. That part of it does not seem to bother me at this stage.
I will definitely be talking to people and hope that I can also give back once things are more in place. I have been able to get through a lot of SE from tips others have had here and I do not expect that to change anytime soon.
My plan as long as I can get away with it, be the "healthiest cancer patient" I can. I am exercising a lot more since I am still able, it makes me feel I will come through the surgery better. The tumour had not quite reached the brain, was in the dura still. Was the head pressure causing problem and the thought is that it was there from my previous DX but too small since MRI was not done initially on the brain. I also believe I consumed so much turmeric for the joint pain during first chemo/Herceptin, I kept the head pressure symptoms at bay for a longer time similar to the Dex doing now. We will see. Thanks for being so welcoming. Can't believe has not even been two weeks but currently the worst news was already given and between cries which I try not to have all day, I walk around the block and use my guided meditation for sleeping at night.
I will be around and hope to help anyone else I can to. Thanks again everyone.
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Caryn, Thank you for posting the picture of your grandchildren What can I say? They are beautiful. I am sorry to hear that you are having issues with weight loss and eating. I hope they find the source of the problem and you are feeling better soon. Do you know when you will have the biopsy?
Mara, Welcome to a wonderful thread. As you have discovered, life does go on, good and bad. I hope you have all parts of your treatment plan in place soon. Does it feel like we do way too much waiting for things like appointments, scans, scan results, treatment plans? I think I am just impatient.
Lynne
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Mara - It would take more than guided meditation, probably heavy sedation, to get me through a craniotomy. But YOU are doing everything right. Present, fighting, strong, focused on doing what you can do to get to the other side. No one knows the outcome on these things, but you have given ourself every advantage. Keep going and let us know how things go.
>Z<
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caryn, when I was losing weight my oncologist prescribed megace which really helped my appetite. I was down to 110 and am now up to 124. Don't know if that is an option with the thyroid issues but thought I would bring it up. New pictures are adorable!
Welcome, Mara. You've found a great thread. My husband and I spent a month in London many years ago, we stayed at an observatory connected to the university as he was doing some kind of consulting with the astronomy/physics department, It was a great visit and I was able to do a lot of sightseeing and homeschooling with my 3rd grade son. Lovely area!
I just finished 10 days of radiation for a 3" tumor that was found on my iliac bone. Lots of pain in that left leg. My oncologist has taken my off Ixempra (obviously not doing much if that tumor was growing so fast) and has started me on arimidex again. The thinking is I have been off hormonals for 5 years and there is a chance that they may work again after the long break. I am happy to have a break from chemo after 5 years but was hoping the Ixempra was my magic bullet. After 8 years I have learned to just go with the flow!
Had a wonderful visit from a favorite cousin and his family this weekend s well as celebrating my grandson's 12th birthday and seeing all but one of my 5 grandchildren, Had fun yesterday with my 8 year old granddaughter shopping for school supplies and clothes. Her birthday is in September but this was my birthday gift to her. Today I rest!
Much love to all of you!
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caryn, when I was losing weight my oncologist prescribed megace which really helped my appetite. I was down to 110 and am now up to 124. Don't know if that is an option with the thyroid issues but thought I would bring it up. New pictures are adorable!
Welcome, Mara. You've found a great thread. My husband and I spent a month in London many years ago, we stayed at an observatory connected to the university as he was doing some kind of consulting with the astronomy/physics department, It was a great visit and I was able to do a lot of sightseeing and homeschooling with my 3rd grade son. Lovely area!
I just finished 10 days of radiation for a 3" tumor that was found on my iliac bone. Lots of pain in that left leg. My oncologist has taken my off Ixempra (obviously not doing much if that tumor was growing so fast) and has started me on arimidex again. The thinking is I have been off hormonals for 5 years and there is a chance that they may work again after the long break. I am happy to have a break from chemo after 5 years but was hoping the Ixempra was my magic bullet. After 8 years I have learned to just go with the flow!
Had a wonderful visit from a favorite cousin and his family this weekend s well as celebrating my grandson's 12th birthday and seeing all but one of my 5 grandchildren, Had fun yesterday with my 8 year old granddaughter shopping for school supplies and clothes. Her birthday is in September but this was my birthday gift to her. Today I rest!
Much love to all of you!
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This is my "Life-Doesn't-End-With-A-StageIV-Diagnosis" response. I sold my wedding planning business and used some of the funds for this pool, my oasis in the city. When I'm in water, I am pain-free and basically carefree so this is me not giving up.
I realize I'm very lucky to be able to live the good life physically because the cancer remains in my bones and others aren't as fortunate, but for now...I am in charge of my life and attitude. I wish everyone just as lucky.
Amy
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Dear ladies who've been experiencing issues and complications, I'm very sorry. Caryn with your weight loss and thyroid and Mara wth your mets to your dura, I'm sorry. Gator gal, I hope rads knocked your mets out for good.
I hate to be so flip about a pool and "winning" when others suffer. I wish I could heal the sick, feed the hungry and shelter the poor. Those are my dreams and prayers.
With love and gratitude to each and every one on BCO.
Amy
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Amy, Don't feel bad about posting the picture of the pool. You did not sound at all flip. I am sure that everyone here enjoys hearing about all the good things that take place in life. Life isn't all doom and gloom.You have your own challenges, just like everyone else, but you have a great attitude. I hope you enjoy the pool. I imagine that your summers are short there in Minnesota just as they are here in NH. I have a pool and have really enjoyed it this year with all the hot weather we have had. Swimming is great exercise. I have to admit that I do more than my share of floating and just enjoying the water. That doesn't count as exercise, but it sure feels good.
Lynne
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Yes, what you say, 50s girl. I sent you a pm, Amy, asking about the pool because I consider putting one in, too. We all hope for the best quality of life for each of us and I can understand the excitement of new cars, new trips and new pool construction as well as milestones and happy occasins with husbands, children and grandchildren. I am glad we can make the most of each day
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Amy, I agree about posting the pool. We all celebrate for good things too. Thanks everyone for your words of encouragement.
Caryn, I also wish you the best and hope you are more comfortable as well.y best to you all.
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Thank you all for your good thoughts. I am waiting for a call from the endocrinologist so that a biopsy can be scheduled. I've been through all of this before (about 15 years ago), so am not too worried. I feel fine, save for loss of appetite but I am rather petite, so a 9 lb weight loss is very visible.
Will spend the day watching both grandkids (separately), but after today, I devote myself to my classroom. I was finally able to get in there yesterday but all I did was unload the school supplies that were stuffed in my car. Take care, all.
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Amy, we have had a pool for over 20 years. I absolutely love it. Can't imagine a summer without it. I hope you enjoy every moment of it.
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Amy - love the pool! Post pictures of the finished project and we will all have a virtual pool party! I'll bring the drinks with the tiny umbrellas.
Caryn - Wishing you the best with your biopsy. I hope they can figure out what is going on and get it taken care of.
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Virtual pool party in two weeks! I need a virtual caterer, pool boy and Jimmy Buffet...who's in
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Amy - I love the pool, too! Happy for you!
Caryn - love the grandchildren! Cutest picture ever! Thinking of you as you wait for your test results.... please keep us posted. I am going to be in SJB for a week the end of August. I know you are going back to school so busy time of year, but I will PM you about possibly getting together for coffee on a weekend.
Mara - welcome...I also saw you on the Fitness Thread. As others have said, you have a good attitude and outlook. I love how prepared you are. I have been on Herceptin for almost four years, so if you stay on that treatment and have any questions, please let me know.
Hello and love to everyone else.
XO
Andi
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Thanks Andi and everyone. I have watched you a long time here and on the fitness thread too. I actually was happy yesterday because it had been a few weeks since my last herceptin (only overdue by 2) but still want it in. Andi, If I continue for longer I will definitely hit you up for advice. I just need a bone scan but CT showing me NED below the head so am thankful for that. Just have to be patient, get the craniotomy Friday and wait for more plans. So far, there were no other lesions in the brain, just the one on my right temporal lobe and that has not caused other neurological problems.
Still obsessed with the exercise since I am still able to move my body but will be around lots after the surgery.
Amy yeah for the virtual pool party. That sounds great.
Caryn, I will be checking on you too. Glad the hospital has free WIFI that actually gives a decent speed. Would be too boring otherwise.
Love to everyone today.
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Thinking of you Mara as you go though all of your new treatments this week. I hope you sail on through and back at your fitness routine very soon.
Love the pool Amy. I like to see all of the good things we do for ourselves as Life does not End with Stage IV! We still want and deserve joy, pleasure, and yes some indulgence ow and then. Plus that pool is therapeutic! Hahaha love the "drinks with umbrellas" and pool boy ideas!
Have a good week back at school Caryn. Hope they get some quick and good answers for you. I am not ready for summer to end AT ALL! Luckily at least we should have good weather through September so there is always the weekend.
Gatorgal, so sorry you are having lots of pain. I hope the rads work soon for you. Yet you still run around with those grandkids! You really do go with the flow....I am so envious of those of you who have grandkids old enough to forge a relationship with. I want that so much!
Speaking of grandkids Kandy, the little man must be coming pretty soon!
My new news is that we finally put up our house for sale. Kind of bittersweet, but looking forward to a new chapter and downsizing to less work and more expendable cash! It is quite a job and very annoying having people tromp through my home, but we have a LOT of interest so are hoping for top dollar. We already have our eye on another smaller house in a golf community with a spectacular view. So we'll see if it's still there when we are ready.
Best to all you girls!
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Thinking of you Mara as you go though all of your new treatments this week. I hope you sail on through and back at your fitness routine very soon.
Love the pool Amy. I like to see all of the good things we do for ourselves as Life does not End with Stage IV! We still want and deserve joy, pleasure, and yes some indulgence now and then. Plus that pool is therapeutic! Hahaha love the "drinks with umbrellas" and pool boy ideas!
Have a good week back at school Caryn. Hope they get some quick and good answers for you. I am not ready for summer to end AT ALL! Luckily at least we should have good weather through September so there is always the weekend.
Gatorgal, so sorry you are having lots of pain. I hope the rads work soon for you. Yet you still run around with those grandkids! You really do go with the flow....I am so envious of those of you who have grandkids old enough to forge a relationship with. I want that so much!
Speaking of grandkids Kandy, the little man must be coming pretty soon!
My new news is that we finally put up our house for sale. Kind of bittersweet, but looking forward to a new chapter and downsizing to less work and more expendable cash! It is quite a job and very annoying having people tromp through my home at all hours, but we have a LOT of interest so are hoping for top dollar. We already have our eye on another smaller house in a golf community with a spectacular view. So we'll see if it's still there when we are ready. Scans on Wednesday, trying to fend off the scanxiety....
Best to all you girls!
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Thanks Artistatheart for the well wishes. I am basically ready for the craniotomy. Still setting my self expectation to get out Monday since no one on over the weekend to make sure I can do it.
Good luck on the sale and I am also hoping you get top dollar. I can imagine the scanxiety for sure and hope that passes quickly for you.
Love to all on this great thread.
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Hello ladies, I hope everyone is doing well. Caryn, hard to believe summer is almost over and it will be time for you to meet your new kids for the year. Welcome Mara, I hope everything goes well for you. Gatorgal, praying you can get some relief soon. Artistatheart, I hope your house sells quickly and you are able to get the perfect home. My husband would absolutely love to be on a golf course. My DD is now off all drugs that was keeping her from delivering our little man. She went to the Dr yesterday and she told her that she thought she would go within a week. She has already started dilating. I'm so excited, I can't hardly stand myself. Hopefully he will be here soon. Can't wait to post pics. I hope everyone else is doing well. Enjoy the moment.
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We all love the good news on this thread! The pool looks gorgeous! I'm in for the virtual pool party!
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I welcome the awesome news on this thread too! Enjoy that pool!!! Actually, I more than welcome your good news, I need them!!!
I got a significant to-do list for this fall, and you truly inspire me....I want to get married to my partner of 13 years, the love my life...start a bucket list...tweaks to enjoy work...etc..
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GatorGirl, I hope you are feeling better soon and that you have relief from that pain. I am glad that your MO is giving Arimidex a try. I have read that revisiting prior treatments can give good results. I hope that happens for you. It will be great for you to have a vacation from chemo.
Mara, How are you doing? Hospitals can be so boring. I wiil be thinking about you tomorrow. You are in my prayers.
Caryn, it is hard to believe that school will soon be in session. Your students are lucky to have you as a teacher. You love what you do, and I have no doubt that it comes across to all of those whose lives you touch in the classroom.
Artist, it is great that you have so much interest in your house. I hope you have as much luck finding your new dream home as you are having selling your current one. I can imagine why you have mixed emotions about moving, but you will take all your memories with you. The move will not erase them. I would find it exciting to move to a new place and decorate it so it is just what I want.
Kandy, I am anxiously awaiting pictures of your little guy. I feel as if we have all been experiencing the ups and downs with you and your family. It is exciting to see the wonderful event coming so close. Before you know it, your little guy will be here, and he will have a real name!
Gramen, it is so good to see you planning for the future. Keep us updated on those wedding plans. I expect to see pictures, of course. I am also interested in learning what you have your bucket list. I think mine would be a very long list. I guess I will just have to live for a very long time.
Enjoy your day.
Lynne
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