Glenna, boy, did you peg me. I do try and do too much a lot of the time but slowly I am improving and cutting back on the amount of time I spend doing heavy or stressful work. My husband nor son can use the chainsaw and I actually love using it, so in additions to protective glasses and ear plugs, I now wear a mask. I allow myself one tank of gas and then I have to stop for the day and NOT do it the next day, but wait a day or so.
I have, until BC plopped itself into my life, done practically everything in and outside of the house. I have carpentry tools and lots of garden ones. But now it is a question of energy. I don't have any problems breathing and my O2 saturation was 98% the last time it was checked, but I think the Tamoxifen makes me tired and it prevents me from getting a good continuous 8 hours sleep. I am trying to learn modification. Ha
I'm glad to know I'm not the only one who has crying bouts and it's when I do think like you said about your children being adults, but they aren't quite yet. My 19 year old son is very practical for his age, but sometimes the youngness and lack of experience comes up and I have to advise him what might be the result of his action/s. As for grandchildren, wow, that's ages off for me, as Max just in April announced he has a 'serious' girlfriend.
I don't like the idea of the oncologist telling me I could live, on average, another 3 - 10 years. Three years is just not acceptable and I don't even like being limited to 10 but that would be better. When I tell my 79 year old husband this, he says he is 79 and doesn't know if he will wake up in the morning and I'm only 60. Pisses me off as I then say well, you've had 19 years more to enjoy your life that I don't know if I will get to. He doesn't get it.
I need to be here for him (husband) as he is beginning to show his age a bit, doesn't quite understand things and I have to go through things 2 or 3 times. He forgets things he used to do automatically. I accept him aging and I know he is worried that if I die before him, who will take care of him. Well, my BFF on Kauai said she would move here if that was necessary and she has my permission to keep my son in line. Hope I don't have to rely on her, but it's a relief to know Jan will be here.
Jan was my constant companion when I first was diagnosed with BC. She would call me every couple of days or I would call her. If I didn't call her for like 3 days she was ringing here. She has listened to me rant and rave, complain and bitch. Worse thing was telling her over the phone in January about the mets, but I didn't want to wait until Max and I got there to stay with her for two weeks in February as Max doesn't need any more exposure to this. Jan said it was good I told her because she said she totally fell apart. That's why only about 6 people know.
Like you, I have done all I want to do. I like going back to Kauai once a year and seeing my friends from when we lived there, but other than that, am happy at home and actually really like garden work, including chain sawing (there is something about it that is empowering) and doing house repairs, like replacing boards on the porch and painting house steps.
Yes, I am lucky Dr David comes to my home, but I know making him two large stained glass lamps designed just for him helped, and I know he and his wife would never say no to champagne. But really, even without all of that, he would do it. My husband said to him a while ago - you know you are a rarity - making house calls. He replied 'I'm a doctor'.
Wishing you a summer filled with fun and joy and no health complications!
I wish that for ALL of us!
Glenna, guess we have to keep ourselves as healthy as possible and take our meds so we can stick around for a long long time. I am getting back on my treadmill so I will really work my lungs to their full capacity.
Debbie, with your motivation, I think you WILL be here a long, long time!!
Glenna I've been following some of your posts and I really like your attitude. I've done quite a bit with my life too.. Raised a family, built a successful business, lost a man whom I adored and we had a fun filled relationship. Lots of traveling. And now with this breast cancer I've come to realize that what I want is to live closer to my family and enjoy them for as long as I can. And they enjoy me too. I think I have fulfilled a lot of my bucket list, and so I'm having a house built near my son's home where I hope to live out the remainder of my life. I have my condo on the market and that's the nervous part. I have my house being built while waiting for the condo to be sold. No bites on it yet, which is nerve wracking. I need the condo to be sold in order to pay for the house.. I have faith that it will happen. Nothing like adding a little stress to an already stressed out life. But I've been doing well with faslodex and Aromasin, and my lungs appear to be fine. Ct scan showed a small spot on the lung with no growth. So that's good. I would just like to see my condo sold. I'm 73 years old and my cancer is aggressive so anything can happen.
Tree, the real estate market is improving so hopefully that condo will sell soon!! It will be nice to live near your son. Keep the faith!! It really is, for me, all about family and friends. But I wish I had the energy to get on a treadmill. LOL! Have a great Saturday, all. I'm off to watch 5 year old granddaughter in her end of year gymnastics Olympics!!
Tree, Glenna is right on that the real estate market is improving and condo's are great for those who don't like or want a big garden. Am thinking of you : buy Tree's condo, buy Tree's condo....
Glenna : my energy only extend to walking on the treadmill. Can't run anymore due to the compression of the three discs in my lower back, so it's a brisk walk with my favourite soap show on. No big deal. Just trying to get as much air into my lungs as possible. Hope you had a wonderful time watching your granddaughter do her gymnastics!
I have recently been diagnosed with lymphangitis. Struggling to find much useful but seems to be cancer cells in the lymph nodes in the right lung creating fluid so there is less air to breathe and seems to be a very aggressive form of lung mets.General bc history to date. Primary bc found Sept 2011. Inoperable so did neo-adjuvant FEC-T chemo. Didn't shrink enough so next step was rads and developed stage 4 skin mets at this time (May 2012). Did xeloda which gave me 6 months stability then switched to Navelbine. Ct scans showed pleural effusion in left side. Had pleurodesis but some fluid built up again and can't be easily drained as talc makes it collect in small pockets. Skin mets also restricting room for left lung to expand. Had to be admitted to hospital twice with breathing problems in last few weeks. Latest admission just over a week. On oxygen, steroids and low level opiates. Fluid drained from right lung. Started weekly taxol on Thursday, currently on letrozole too but not had enough time to tell if it's working. Hoping to get home Monday. Trying to move house next month to from 3rd to 1st floor so less stairs. Scared this could be last shot if can't get breathing under control.
Do any of you gals with lung mets have a problem with humid climates? I find I am very short of breath in humidty, however, I also have a paralyzed diaphram due to nodes in my chest compressing on the nerves. Anyone else dealing with this stuff?
Karen: it gets very humid in summer here in Australia and as I was just diagnosed in the middle of this past summer, and am asymptomatic, no - the humidity didn't make breathing an issue. I do know when we lived on Kauai with it's humid climate, some of our severe asthmatic patients (I worked ER and ICU) would have more problems.
Gail5 : well, you really are carrying a lot on your shoulders. All I can say is it seems like the doctors are doing all they can (from an ICU RN's point of view) and now a lung met'er. About all I can suggest is to work on some mind and breathing exercises to calm yourself in your mind so you try to avoid tensing up which will make challenged breathing even more difficult. There is something on the internet called Mindfullness at www.stillmind.com by Russell Haines and you can download his book with the breathing and relaxation exercises.
I now suffer mostly from anxiety and take medication for it, but this stillmind is helping me relax and even to fall asleep at night - a big problem for me.
Hope you have help with your moving. The lack of stairs should really be wonderful for you!
Karen, I'm too new with lung mets to notice whether humidity affects my breathing, but wouldn't be too surprised.Justagirl I'll have a look at your exercises they sound like just what I need to calm my breathing down. Looks like we'll have plenty of help moving so I can relax a bit.
gail5 - glad you have plenty of helping hands with the move. We just redid all three levels of our house and it literally has taken me a month to clean up and unpack and rehang pictures. Ugh...but I was good and did it all at a much more sedate pace than a would of a year ago.
My new word is moderation........ha - that will last until the next thing I get excited about!
I do hope the stillmind breathing helps you. Remember, you have to do it twice a day. I just downloaded the book and it's easier for me than looking at the computer and I can bend down pages to mark parts I want to go back to.
Hey Debbie - Thanks for reminding me it could be my asthma too. Probably more likely, but since I've had Stage IV, I attribute everything to that. Thanks for the info.
Karen2012: I don't know about you, but any ache, pain or physical problem I have the first thing my mind jumps to is mets! I have a friend in Toronto and she said today it was 40 degrees. So if it's humid too, yes that would very possibly affect an asthmatic's breathing. Remember, as a asthmatic, you should treat yourself with the first early signs - more effective and less medication required than waiting until the asthma really has you in it's clutches (that's the RN in me again, speaking up). But if your Dr has advised you differently, you should call him and discuss your lung mets and the asthma treatments. Maybe forewarn your GP, as I am almost sure most oncologists might be clueless as to asthmatics and together, with both Dr's talking, then your GP can advise you better.
justagirl - I feel exhausted just thinking of the work involved. I expect if I can sort out my breathing I won't be able to resist a smaller project though. Still considering whether to do central heating or just buy a extra heater for the bedroom as have gas fires living room and kitchen.Karen it's so easy to jump to mets with any sign of a symptom. Makes sense if it's asthma. Hope you get some relief soon.
Thx Debbie and Gail - You're absolutely right. I just came back from San Antonia and the humidity was 98%. I don't know if you've been watching the news in Canada but I live only 20 miles away from the flooding disaster and it's normally very dry here. But it's certainly humid and rainy here now. Just finished a course of Prednisone, helped about 50%.
Debbie - being a nurse do you know of a device I can purchase to do lung and breathing exercises? I have read about something on the boards, but can't remember what it's called.
I have Met to lungs and just finished 7 rounds of Abraxzane. So far it seems to be working. Sorry it's not the same for you..stay strong and best of luck with the next drug. Hugs! Lisaxxx
Karen: there is a little plastic thing called a spirometer which measure by balls in columns going up when you breathe into the device how well you are breathing. I don't know of anything equipment wise that would exercise your breathing but what you can do for yourself. Simple yoga breathing can increase lung capacity. Also walking in a level area with shoulders back and down will encourage you to take deeper breaths. With the spriometer you could check yourself before and afterwards. If you want me to walk you through yoga breathing or beginning to walk for breathing, pm me. YOu can also use the spirometer like every 20 seconds and try each time to get more balls up. This in itself can increase lung capacity. Don't do for more than 3 mintues at a time three times a day
That's my aim now. To increase my lung capacity as there are so many tumours in there!
Good for you Lisa! Enjoy life...
Karen - don't think you will be able to walk into a drug store and buy one. Maybe your doctor's nurse can order one with their medical supplies and then you can pay them directly. I wish I had a fairy wand and could grant you easier better breathing, but, I didn't. So, we have to find our way with the help of each other.
Hello girls, i am so happy that i found this board... I was also diagnosed with bilateral lung mets in april, since then i do weekly chemo wth Abraxane. I feel great, no side effects, exept for the hair loss, which i am used to ( first Dx in 2006 and had chemo) I have 5 more treatments to go... I am also doing a lot of alternative treatments also, which i belive helps a lot. I am 32 years old and just finished nursing school and addopted a baby boy!!! My life was just going to begin, right? Now i am fighting for my life... I know that everything will work out and i will live for a long time, but in the same time i am so scare.....Thank you to all of you for being here and i wish the best luck to every single one of you. Cancer is not a death sentence, it is just a diagnosis!!!
mila vegas: you have a lot to live for, so enjoy every day. Your attitude seems upbeat, as many women get upset about the hair loss due to chemo. For me, I easily accepted it as the chemo was to help me fight the BC. And now, you are one of us, with lung mets, we know we will be on something for the rest of our lives - which I darn well plan on being long...............you are just a youngster compared to me being 60, but my son says I look younger than his friends Mom's and they are younger than me. I didn't have my son until I was 41. Congratulations on finishing nursing school (I was an ICU RN) and adopting your son. Hospital work can be flexible for you being a Mom and dealing with BC. I see nothing wrong with alternative treatments also, as long as they don't take away from the efficiency of the traditional treatments. I've done accupuncture, massage, yoga and try to walk at least 3 miles a day and get out in the garden 3 days a week.
I have come to believe having my mets is like a chronic disease - on which will never quite go away, but I can live with it. I, like you, am asymptomatic, but realize this could change too, but when / if that happens I will do whatever I can. I have only told about 6 close friends about the mets and this is the reason why: dear friend calls weekly from California. "how are you feeling" I say 'fine' He says 'now tell me the truth'. I tell him I am. Finally yesterday I told him right now my lung mets were a 'non-issue' as they didn't effect my life. Sure, the Tamoxifen I take I think makes me a little tired, and more emotional, but maybe knowing about the mets does that, and I get whoppers of hot flashes.
No, now a days, there are many treatments for cancer and for lung cancer, and I feel very positive even though I can't have radiation or surgery as these mets are all over my lung lobes and too tiny to measure but there are 100's of them.
Being positive is important as being negative takes more energy. I have my down times, and for a while they were too often and too long so my GP put me on an anti-anxiety medication, and WOW, what a change!
And, you are not alone: I'm scared too!
Hi all,Just returned from a two week vacation and trying to catch up with all my "favorite" threads. I've read all your posts and love seeing how helpful you are to one another. BCO has meant so much to me over the past couple of years and I appreciate the friendships I've made here. To those of you who are new with lung mets justagirl had some great words. It is like living with a chronic disease. It's been 5 years for me and I've been on lots of different treatments. For now, taxol seems to be doing the trick but I never know when I'll get advice from my dear oncologist that it's time to move on to something else. The good news is that there is always something new to change to. Had a PET scan today and will get results tomorrow. Yes, I did take something to help me sleep! LOL! It's good to be home, good to be reading posts from my friends again, and love having someone to talk to when I'm awake in the middle of the night! Hugs, Glenna
Glenna - sounds like you have been really enjoying yourself and that's what life is all about!
The friendships I have made here will be everlasting with those I have seriously connected with, and with not just our BC in common. Family, friends, work, life, but a friend made from the BCO website will always understand when you need sometime to talk and share with about BC, especially how for me it has affected my whole way of thinking and being. I'm learning to re-create myself, as I accept my life will never be as it was before BC. And, the best part is, I like the new 'me'. I don't feel so pushed an compelled to get 'everything done' and have 'everything perfect'. No more conflicts. I'm not going to let someone verbally run over me but I don't have to sink to their level either. Just let it go.
Women like you Glenna give a newbie to mets like me a look into what my future can be like to and for that I am forever grateful. Gone are the days when the sun comes up, the sky is blue, I look out the bedroom window and crawl back into bed under the covers until 12, 1 or 2pm....and I do mean pull the covers over my head. Then when I would get up I would get all anxious over the time I wasted hiding in bed because I was afraid and anxious so it was a vicious circle.
Will be thinking of you when you get the results of your PET scan, and so glad you took something to help you sleep. Please let us know.
I've really been down the last couple of days but I think it's just because it's gray and rainy and cold and windy and I can't go outside and garden or even sit on the porch and have my morning coffee with Jaki (dog). Spoke with a dear friend today and told her how down and out of sorts I felt and she said didn't I ever feel that way before BC. Yes, but it didn't last for a week. But I accept I'm not going to be a bundle of cheer and energy every day and that's all there is to it.
Missed you Glenna!
How is everyone else? mila vegas, karen, lisalougirl,Gail, Tree? Tree, did you sell your house? Gail, is your breathing any easier?
Hey, just a girl, thanks for the concern about the sale of my condo. Nope.....not sold yet, but a few are returning for second looks. I hope that's a good sign. In the mean time I own a small condo on the water at CapeCpd in MA, and although the weather is a little insane (lots of rain and wind) I'm away from the condo that's being shown all the time, which means I have to clean up and clear out. So here I am about to celebrate our Independence Day tomorrow, the fourth, and my son, daughters law and two grand kids are coming in on a ferry from Boston, MA to celebrate with me. I look forward to having them here and was up and grocery shopping at 6:30 this morning in preparation. I find that's the best time to shop,AWAY from the crowds.I hope all of you have a wonderful and safe weekend and try to forget your worries at least for a few days.Tree
Hi Debbie - Thanks for asking. My lungs are a little better, but not 100% yet. Reading a book right now "Mind over Medicine" and trying not to think about the whole cancer thing everyday, but just live my life as happily as I can... that's all we can do, right? I've had some "blue days" as well, I'm sure we all have. But I've found some of the books, I've been reading very inspiring. I wasn't a super religious person before, but after reading positive thinking books and near death experience books, I found that they helped me quite a bit. Maybe it could help you too. There are medical miracles all the time. Maybe we'll be one of them!! Hope you feel better and glad you have friends to talk to.
Karen: I follow no religion and am not a believer in God since my mom died when I was 10. Up until them I was in church every Sunday. I tried to read some of the self-help books, and some just to do with breast cancer and couldn't get into them.
Then my GP mentioned mindfulness. It's on the internet under everyday mindfulness by Colin Thompson and he lets you download his book for free. It's the first book I have been able to stick with and read, and on every page he says something that I know can help me.
We do have to try to help ourselves. It's easy for others to tell us a positive outlook is healthier than a negative one, but it's more challenging to be the person with lung mets (or whatever) and modify and change your thinking and feeling patterns and habits.
So I say we do whatever makes us feel good and maybe helps us to enjoy our life more.
Karen, so glad you are feeling better - that's what counts!
Yes, I am lucky to have a couple of BFF's who listen to me, even though two of them have never had any type of cancer (and I hope never do). One of my BFF's has been in my life for 25 years and my son thinks of her as his auntie and I think of her as my sister, as I do of my other 2 BFF's. Maybe it's because I never had a family. I also have the love of my husband and son, but sure can't share with them like I do with my BFF's and my friends here. My husband and son would think me nuttier than they already think I am!
Could you provide me the title of two of your most helpful books? Since me and these mets are stuck with each other for life, I best learn to live in harmony with them!
Keep it up Karen - as you say - we might be a couple of the ones 'cured'.
I have missed all of you and am glad to be back. Fortunately I was with my sister who was a hospice nurse for 6 years so understands me as well as you all do. Tree, how lucky you are that you have a place to go while your condo is on the market. Always such a pain to keep everything neat and clean and then to be prepared to run out for a few hours! Best of luck with the sale. Karen, hope your lungs improve everyday. I have had to learn to live on diminished lung capacity and while it is doable, I do miss being able to run and play with my precious grandchildren. The vacation wore me out because we did so much walking and I was determined to keep up.Got the PET results today. Not exactly what I hoped for but could've been worse. Onc says the tumor is stable but with insignificant progression. I read the report and it seemed a little more than insignificant to me (looked like the tumor had more than doubled in size) but he is always positive with me and I do so appreciate that. I'll have a CT scan next week so he can better determine the sizing and then go from there. He would like to keep me on the low dose taxol because it is so good to me in terms of side effects.Just a girl, it's okay to have bad days. We all do. It is easier of course if we can stay busy and keep cancer out of our minds, but that just isn't always possible. I was at the hospital from 9:15 to 3:30 today .... kind of hard to keep cancer out of your minds when you are living it so often. When the weather is bad and you can't get out, immerse yourself in a book (maybe one that doesn't talk about cancer) and get involved in someone else's life. That always helps me. Wishing you all a happy 4th of July, and to our Canadian friends, hope your 1st of July was all you hoped it would be!!
Glenna - thanks for letting me know so fast your PET results. Insignificant progression sounds like the tumor hasn't really changed since it was last checked. They should be able to do an exact measuring and comparison of your last CT with the one next week. Sounds like a lateral move, not worse, not better, so keep on going.
I am amazed you kept up with everyone with all the walking you did. You are one strong determined amazing woman.
Yep, yesterday was bad, and so were the few days before it, but am feeling a turn a round today, and it did help that the sun was out for a while and I saw blue sky. Jaki and I even had coffee out on the porch. You are right about keeping busy, but sometimes my back aches so much I just have to lie flat and read a good book. I love to read so that isn't a hardship. And no, I don't read books about cancer. I am reading a 'help' book so I can learn to relax more, be less anxious and stop trying to change things I can't. It's the first book of it's kind that on every page I feel I am learning something
. I also take in horses whose owners can't afford to keep them if they have to pay stable fees and usually these people are 'needy' themselves, so I try my best. One woman who has her 29 year old horse here - well her Mum was diagnosed with BC a few months ago, and I think I've helped her a bit. When the weather is warm, she likes to sit in the chair I put down by the paddock gate where we feed the horses and she sits there under the trees for a couple of hours at a time. She says all she sees is green and it's quiet, only the birds. That's why I like my home, it's my refuge from the world. And last week two 10 year old girls that are horse mad came down our drive with one of the mothers and asked if they could groom my horses as they just love horses and ride every weekend doing lessons. So I said yes, as long as their Mother was with them. The old horse is 29 and sweet and so is our big boy - Manny, who is a 6 year old Palamino but he is almost 17 hands, so big...but loving and gentle until you want to ride him. I knew the girls would be fine with him as he adores attention. Yesterday they came up to the house to ask if we had any hair conditioner to get the knots out of his mane and tail and my husband gave them a bottle and then carried a couple of buckets with water to the paddock where they were grooming them. So cute: they have decorated a box with pink paper with pictures of horses and carry their 'equipment' in it. The parents are just seeing if they will stick to it or get bored before they invest in horses for the girls.
I just don't like it when I get all mopey and teary - feel like I am wasting time as when I'm like that I don't do anything. I've tried getting busy when these days happen and it only makes it worse. It's like a storm blows in and then blows out.
Ok, I'm done. Going for a good night's sleep. Didn't do well last night. The Tamoxifen really gives me some kick-up hot flashes at night!
I know that the topic of Robin Roberts seems very controversial to some, but I found one of her quotes very inspiring.
"I didn't go through all this treatment and chemo to wake up depressed everyday. I want to make the most of everyday that I feel well".
I know it's tough, but I try to relate to that.
Debbie - Whats the name of your book?
Karen: will look on internet for Robin Roberts.
The book I am reading is called Everyday Mindfulness by Colin Thompson and you can download it at his site :www.stillmind.com Unfortunately he has some problems with listening to the examples for breathing and other forms of relaxation but it's all in the book, which you can find listed on the left side of the intro page. I couldn't believe for free the man was letting us download the book. It's 69 printed pages, so easy to read. And in all truth, on every page I learn something which helps me or makes me feel better, so it's the best I've come across. Heck, he's on the other side of the country and if he was taking new patients now I would pay $150 a week to talk with him over the phone or skype! But his book is getting me to see things, like to not waste energy on things I can not change. Example: I can not change that I have lung mets. I can work to stay healthy, exercise my lungs and eat well and get rest and stay away from stress.
I'd be interested in what you think!
Heck, I was just 57 when I was hit with BC and now the mets in January. I felt I was just crusiing along, all was well and I would be going strong for at least another 20+ years. My husband is 79 and is a whirlwind of energy and his mind is as sharp as ever.......
Fellow lung metser here and currently stable on a concoction of herceptin/tamoxifen. I am a very spiritual person and always have been although I have too say that since I've been dx I have been looking into my own faith in more detail. A long the way I have found a couple of books to be instrumental in my own belief system and ideas these books are not religious they just make sense.
Here's a list of links to the authors websites http://berniesiegelmd.com/ Bernie's book Love Medicine and Miracles is a breath of fresh air and a must read. Another is Eckhart Tolle a special person with a unique message catch him here on youtube http://www.youtube.com/watch?v=L0jhnrsKJ_M. I'm currently reading Dr Brian Weiss a regression therapist who has written many books on the subject the title is Miracles Happen here's a link to his site http://www.brianweiss.com/ I can also recommend to anyone who is leaning towards spirituality this blog written by a fellow secondary breast cancer patient about cancer and sprituality http://spiritual-light-on-cancer.blogspot.co.uk/. sending lots of love and light to you all sarah xxx