Please respect that this forum is for members with stage IV/metastatic breast cancer only. There is a separate forum for caregivers and friends: Caring for Someone with Stage 4 or Mets.
Posted on: Mar 9, 2014 01:42PM - edited Mar 9, 2014 06:14PM by exbrnxgrl
Our sister, kayrnic, started a thread celebrating being 2 years (hooray!) out from her stage IV dx. I was thinking along those same lines when I read her post. So often, those newly dx'ed stage IV, think they've been handed an immediate death sentence and panic or plunge into some very dark places. This is understandable, as the dx is shocking and what will happen is a great unknown. After the initial shock wears off and you learn as much as you can about stage IV (knowledge really is power!), many of us discover that, though changed, life can be surprisingly...normal. Before I go further, I fully acknowledge that this is my experience. Others may have very different experiences and I am in no way marginalizing the difficulties they face.
So here is how my life has progressed since my stage IV dx (bone met), almost 3 years ago:
-I continue to work full time as a first grade teacher. I love it and for me, teaching is a calling.
- I walked my younger dd to the chuppah, when she married her lovely husband.
- Sadly, my mother became ill and passed away about 3 weeks after the wedding. I am grateful that I was able to spend most of the summer with my dad as we mourned my mother's passing.
- I have become a grandmother. My beautiful granddaughter will soon be 2 years old.
- I have taken a two week cruise (including very long flight) to New Zealand and Australia. At the end of the cruise, I climbed the Harbour Bridge in Sydney.
- I'll be going on a one week California Coastal Cruise in early April. Winery tour in Mexico, biking in San Diego are on the agenda so far.
My everyday life is largely unaffected by bc, though there is never a day when I don't think about it. I still have to get my port flushed (not on IV tx, but I'm not having it removed, for obvious reasons) . More doctor visits than I'd like, and waking up feeling stiff as a board each day, due to Arimidex. I do tire more easily, but I have the luxury of lots of quiet time when work is done since my children are grown. Let me be clear, I am not bragging about how great my life is or how "easy" stage IV is. I just want others, particularly those just dx'ed with mets, to understand that you could very well have a fairly normal life for some time to come. Lastly, never, ever discount the power of anti-anxiety or antidepressant meds if you need them. I have been on Effexor since my dx and wouldn't be without it. I have no se's from it and it hasn't dulled or numbed me in anyway. I also keep Ativan on hand to use as needed. Breast cancer will be the end for the vast majority of us stage IV ladies, someday. Don't let it steal your life one day sooner than it has to.
Posts 3691 - 3719 (3,719 total)
Oct 11, 2021 08:21AM - edited Oct 11, 2021 08:23AM by DivineMrsM
Ohmygosh Caryn, your granddaughter is totally adorable! She looks like she's barely missing a beat after taking a tumble that required a trip to get stitches!
Speaking of being an old grandma, I'm feeling it after this weekend. My grandkids were in and we took them around to Boo at the Zoo and a pumpkin farm filled with activities. I'm worn out in a good way after being steady on the go for a couple of days. It was fun spending time with them. Ages 12 and 10, they are growing up so fast.
Oct 13, 2021 12:37PM DivineMrsM wrote:
Can anyone offer advice? My son told me yesterday that he and his girlfriend, with whom he’s lived with for six years, are in the process of breaking up. I am so terribly sad over the news. Heartbroken, really. They have decided they want different things for their future, so they feel the best thing to do is part ways now. His girlfriend is such a wonderful person in so very many ways, and I am going to miss her being a part of our family. My son said the split is an amicable one where neither is angry at the other. I hope it stays that way. It’s unsettling news and it makes me feel sick to my stomach.
Oct 13, 2021 01:28PM exbrnxgrl wrote:
Dealing with adult children as they navigate through life can be a bit of a tight rope act. I think that despite your sadness, you simply need to support your son. To their credit, they are breaking up on good terms so there should be no drama. It’s also good that they recognized that their lives were not going in the same direction now, rather than if they married or had children. Of course, since you liked her, you are feeling the loss but in the end, this was their decision.
I am not sure if I’ve posted about this before so forgive me if it’s a repeat. My older dd was engaged to someone we really liked. She broke the engagement because she had feelings for someone she knew at her part time job. They eventually married and eventually divorced. We never felt very comfortable with her husband, but as an adult, there was little we could do. The marriage did produce my lovely oldest grandchild, so something good came of it.
Fast forward 12 yearsand through mutual friends, former fiancée got in touch with my dd. In the intervening years he had had a few relationships but never married. I was sure, almost from the time he got in touch with her, that the relationship would be re-kindled. Sure enough, he moved back to CA and they just bought a house in Napa (I will be a very happy visitor!). He is still the wonderful person I remember from more than a decade ago and I’m sad to say that he’s a better father to my granddaughter than her real father is. Sad because her real father is and always has been a deeply troubled person. Now, I’m not saying there will be a miraculous reunion for your son but things happen for a reason. As parents to adults, all we can do is offer our love and support and trust that they will handle their life choices, good or bad, as best as they can. Being a parent to adults is sometimes just as challenging as being a parent to young children!
Oct 13, 2021 03:10PM illimae wrote:
Divine, I’m sorry that you’re losing a family member through this but congrats to them for being aware and honest enough with themselves and each other to identify what isn’t aligned and addressing it.
Oct 13, 2021 07:28PM - edited Oct 13, 2021 07:29PM by DivineMrsM
Thank you both so much, Caryn and Illimae, for your replies, they are comforting. I've always been supportive of ds and will continue to be so. I don't meddle and if I did my son would call me out on it. This is their decision to sort through and I know my own sadness is secondary to what they're experiencing. But I'm also very sad for the both of them. They've been together since graduating college and helped each other grow and supported each other since the beginning of their careers and had wonderful new experiences together. Yes, it's a credit to them that they're being honest with each other even if that led to making a difficult decision. Both of them are really terrific individuals and I guess I'm mad at the universe that it wasn't meant to be for the long term.
Caryn, I didn't know about the twists and turns your daughter's life has taken. Isn't that something how it's worked worked out over the years? But I know there were some heartaches along the way. I'm glad things are working out for her and her daughter. Thank you for your insight, you're right that being a parent to an adult is challenging. So many books on how to raise children but not so much on navigating issues once they're grown.
Oct 13, 2021 09:36PM Micmel wrote:
so awesome. Congrats! Sending hugs
Oct 20, 2021 12:39AM Cure-ious wrote:
Aloha from KONA!! I'm here on a family reunion with sibs & kids, rented oceanfront right next to Queen's Bath. I'd load a clip if I had any idea how to edit down videos, even just one minute clip of sunset tonight too big to upload! On to KAUAI tomorrow; trying to make summer last a few days longer!!!! Cheers, life is sweet...
Oct 20, 2021 03:58AM SondraF wrote:
So jealous Cure - French Polynesia is on my bucket list, but its been 30 years since I went to Hawaii (Oahu only) and I would love to take Other Half to either the Big Island or Maui, etc. Easy enough with a stop over! Enjoy the warmth and beaches!
Oct 20, 2021 04:18AM Cure-ious wrote:
Ooh, Polynesia would be sooo cool!!! My son edited down the clips but they still won't load, will try still shots tomorrow- Night-time here, just hear sounds of waves crashing to the shore... We have a rainforest green baby house gekko, gotta close the door so he doesn't come visit..
Oct 20, 2021 07:48AM Chico wrote:Aloha Cure-ious from Wales - no you are right it doesn’t have the same ring to it. So pleased that you are enjoying Hawaii and surrounded by your family. It must be such a special time for you all. I love geckos but they do chatter so best shut out. Sending best wishes for continued fun in a magical place & in “normal” mode!
Oct 20, 2021 09:53AM Chicagoan wrote:
Aloha Cure-ious! So glad you are getting to enjoy Hawaii with your family.
I went once in the 1990's. I actually won a radio contest. It was a blast!
Oct 20, 2021 10:24AM - edited Oct 20, 2021 10:42AM by Iwrite
How wonderful, Cureious! Enjoy!
Divine- drama with adult children is so hard. I’m sorry you’re losing a person you really liked. I spent years keeping my comments to myself. Eventually my DD opened up and I understood. It really is like a divorce even for us parents.
I saw yesterday that we lost Fitzwins. She was a great friend here. Loss seems normal and I hate that.
Are you all doing the Monday BCO call? It would be nice to “meet” you all. We don’t even need to discuss cancer…recipes work for me, too.
Read an infuriating article this morning. “Things we do wrong that cause our cancer.” Go on the Pill (that doctors told us was safe.) Take hormones for menopause (that doctors said was safe). Check family history (that we cannot control.) Maintain healthy weight (don’t even get me started.) Do regular screenings (yep…for 20 years and dx stage IV.) Blame the victim much???
I’d like to thank Pinktober editors for accepting this and guilting BC patients everywhere.
Oct 21, 2021 09:58AM sunnidays wrote:
Speaking of adult children my youngest daughter and her boyfriend are at the wedding of her older sister's ex-boyfriend its a long story. My oldest daughter was with him for 5 years but they were not right for each other and both are much happier now,
I try to be supportive without interfering with my adult children but it's hard sometimes we all only want the best for them.
Oct 21, 2021 12:18PM DivineMrsM wrote:
Cureious, your Hawaiian vacation sounds wonderfully refreshing. Enjoy!
Iwrite, I have some choice words for people and articles that believe or claim cancers can be prevented if only we rein in circumstances beyond our control, but I will leave it up to your imagination what the words are.
Thank you all for the continued support about coping with choices our adult children make. A kind thing happened to me yesterday while at the onc for a routine check-up. A nurse with whom I’d spoke to many times on the phone about oral chemo but had never met in person was the one who came in the room to ask all the routine questions before the doctor came in. It was so nice to finally meet her. After going over the usual stuff, she then said, “Is there anything you’re having a problem with, anything at all, it could be cancer related, or something at home, or family or whatever? “ I’ve never had this question posed to me before, and especially since I knew this woman, I told her about how and why ds is on my mind. It felt comforting to talk about it and she offered a listening ear and understanding, relating a similar story of her own. It made me feel better.
Oct 21, 2021 03:56PM exbrnxgrl wrote:
Wonderful trips, adult children, cancer care, Covid19… life is not always fun but it sure isn’t boring!
Although I retired in June, my former district set up my substitute teachers account today so I can start working after 12/1. I plan to mainly take requests from former colleagues about 2-3 days a week. I am also applying to sub in my grandson’s school district. I spoke to the principal of his school and told her I would only sub for K-1 at the school. All districts are desperate for subs so I can easily pick and choose assignments. They are even relaxing requirements for subs! I’m fully credentialed of course, already vetted and fingerprinted so I’m an easy hire. Who knew I would be so sought after? If it weren’t so sad, it would be funny. Subbing, for me, is kind of like being a grandparent. All the stuff I love about teaching and very little responsibility (compared to the full time teacher!).
Oct 22, 2021 03:24AM - edited Oct 22, 2021 04:53AM by Cure-ious
Thanks y'all!!!! I think the problem with loading my pics is the bad internet here- we are on north shore Kauai, hung out all day at Anini beach, which has a bit of a distant snorkel reef that accumulates all the waves and stretches out for two miles. I was there from early morning to past lunch and saw only a couple of beach combers!! I'm halfway through "The Guncle", sort of a re-make of Auntie Mame, but with a gay uncle who lives in Palm Springs and has to take on his young niece and nephew for awhile- wonderful book. We went to Hawaiian BBQ lunch in Hanalei, its so lush and tropical here (as you know), and its great to see beautiful ocean- Diana, Wales is magical!!! Another good thing about a break like this is how happy you are to come home again...
Oct 22, 2021 12:40PM SunshineDaydream wrote:Hi Everyone, I apologize in advance for not having read through this thread, but I am looking for some career advice and thought maybe someone here could help or direct me to another thread that may be more relevant.
Oct 22, 2021 02:46PM Kikomoon wrote:
Gosh sunshine, this is a conundrum. I don’t know how disability would work if you change jobs now. Also I would want to know about the life insurance with a new job. I’m hoping others here know more. You might want to try the employment thread too.
I am the breadwinner too although my DH does work and we don’t have kids. But I struggle constantly with “should I take disability and do things I want to do”. My health insurance is better than his. Since your DH is not working, that is also something you will need to consider is health insurance costs.
I’ve got all the mets so career change is out of the question for me, plus my manager and coworkers are really understanding and flexible and I don’t know how a new job would be. You are right though, you could have decades left!
Another thing to consider is stress - that would be a factor for me as I can get really stressed out with work responsibilities and it has actually made my lab work result in bad numbers, and I am sure it’s not good for my body. My current employer knows my limits now and we can work with it. If you deal with stress well then maybe it’s not an issue.
I talked with DH last night saying how I was mourning my career that I worked so hard for, taking less responsibility, it’s good for health but bad for my ego and my sense of purpose. Plus, I really don’t care as much about the work. So should I really be spending what time I have left working 8 hrs a day on things that don’t matter to me? We decided I should hang on at least thru the holidays as I feel fine, but I need to try to maximize my “off” hours with things I want to do. One of those things would be trying to monetize a hobby, maybe offset some of the loss of income.
I don’t know if this helps, just thought I’d respond as it’s timely- I’ve been really focused on the job thing yesterday and it really brought me down.
Please report back to us what’s happening and what you find out/ decide to do.
There are lots of wise sages hereI’m sure will chime in!
Oct 22, 2021 06:17PM SF-Cakes wrote:
Very timely topic for me, as well. Have been working from home since the start of the pandemic, and we are just about to return to the office for one day a week, and ultimately they want us there two days a week next year. My meds create a great deal of fatigue, so I'm a bit anxious about how it will be to have a longer day (commuting to and fro). I love my job and my team, and I think if it's just not possible they might work with me so I can be solely virtual. I'm going to wait and see how it feels.
I, too, feel some sorrow about the possible loss of my career - while I've always planned on taking early retirement at age 55, that's still three years away and who knows what will happen between now and then. I'm trying to stay in an attitude of gratitude about today and that I feel good today! I'm grateful that cognitively I'm still with it (at least, no one's said anything to the contrary to me, lol) and can still be part of my team, many of whom I've been working with for 16 years now.
Oct 23, 2021 12:38PM Kikomoon wrote:
Sunshine, I just combed through my current STD/LTD documentation from my employer and it says that pre-existing conditions would not be covered. The define a pre-existing condition as :
you received medical treatment, consultation, care or services including diagnostic measures, or took prescribed drugs or medicines in the 3 months just prior to your effective date of coverage;
and - the disability begins in the first 12 months after your effective date of coverage.
From what I've read online, every plan is different, but group plans under employment are generally more flexible than private insurance. Also, I've read government or state jobs may have some kind of waiting period if you have a pre existing condition. So it would be good to be able to see the fine print if you are able and seriously considering. Maybe even a lawyer to be sure?
SF Cakes - i hear you on the gratitude piece, this is the one thing that seems to get me out of pity parties when I can focus on all the good things - and there is a lot of good. We are lucky we feel ok to work at all. Yes and I feel ok cognitively as well but my team may disagree :)
Oct 23, 2021 12:58PM Kikomoon wrote:
Note: I did NOT see anything about pre-existing conditions is my employer-sponsored life insurance policy, but I would want to see the fine print for particulars before signing on.
Oct 23, 2021 07:22PM SunshineDaydream wrote:
Thanks Kikomoon for taking the time to reply and go through your policy. My employer has never shared our STD or LTD policy with me and it's not available on our employee resource page, I would have to reach out to them to ask for a copy of the policy, which I worry would raise eyebrows. The pre-existing condition clause was something I just recently came across and realized could be an issue for me if I change jobs. Going on disability at some point to enjoy life a bit has always been part of my new plan since my diagnosis. Ive also heard that some employer covered life insurance policies can continue once you leave, so that's something else I'll need to ask about. I'm definitely going to wait until after the new year when raises go into effect and bonuses are paid out before I ask.
SF Cakes - I also hit a wall every day around 4pm and my commute was 1.5 hours each way, and would grow to 2 hours each way next month when we move. There is no way I would be able to continue doing that every single day. Once or twice a week would be my maximum if I really had to do it. Covid caused so many people to reflect on life and how they were living, and this diagnosis only compounded that for me.
And I too am grateful for every day that I have. And I am feeling so much better today than when I was diagnosed and the two months after I started treatment when my body was adjusting to all the new meds. I hope I can continue to live a mostly 'normal' life and be here for my family.
Oct 24, 2021 12:55PM DivineMrsM wrote:
Sunshine, first let me say it sucks that you are so young and have to deal with mbc. And now you’re wondering whether to make a career move. I have no Magic 8 Ball answers, but will ask a few questions. If you were offered the new job and turned it down, is it possible another job offer might come along that fits better into your current life? Would it be enough for you to know that you at least could have had the job, even if you don’t accept it? Is there any chance to move up the ladder in your current job?
I’m usually one who encourages others to go for their dreams, but with you I have concerns. Certainly the disability insuarnce issue and preexisting conditions would be a big factor for me; you definitely need to know if you’d be covered or not. Another matter of great importance is that you have small children. You don’t have to sacrifice all for them, but the new job would take up not just more time but also more energy. So would the trade off be worth it, more attention to work, less to children? Only you can decide. Another thing is I personally believe those of us with mbc should give our physical, mental and emotional health more attention, and a new job keeping you quite busy isn’t going to give you time to do that.
Those are just my thoughts tho. I’m a feminist who believes in equality for everyone, so I have no judgement about any choice you make. Wishing you the best.
Oct 24, 2021 07:06PM Kikomoon wrote:
I used to find great joy in baking but stopped a few years ago. Today I made a cake and it was great fun! I just have to relax and enjoy the process, listen to some music, and create something. It is made with Elderflower liqueur and has edible marigold flower petals. The flowers were brought from a neighbor's garden. DH gets credit for the photo, my camera skills are junk.
Oct 24, 2021 08:42PM - edited Oct 24, 2021 08:43PM by exbrnxgrl
Your skills are junk? I think not! It looks so fresh and beautiful and I love elderflower. St. Germain?
I too have largely abandoned baking. Years ago, I even made my older dd's wedding cake. The marriage failed but I don't think it was because of the cake 😂. This must be the weekend for getting back to the kitchen arts. My dd has a pomegranate tree in her yard and gave me some. I made pomegranate molasses/syrup. You can buy it in stores that cater to Iranian or Middle Eastern cuisines, but homemade is the best. You can use it like balsamic vinegar but you can also make cocktails or spritzers with it. She is moving next week and promised to pick the tree clean before she goes if I would make more.
Oct 24, 2021 09:04PM Kikomoon wrote:
haha no my baking skills are pretty good, but I suck at photography, I just don’t get understand light and ISO’s all that stuff. I had DH take a the photo.
Yes typically it’s St. Germain but the liquor store said everyone is out of it because of some warehouse issue, so it’s another brand, St. Elder.
Ohh I love pomegranates, a lot of work though to get the good stuff. I have more patience with them these days, just try to just enjoy the time spent getting those little tasty gems out. That syrup sounds interesting!
Oct 24, 2021 09:21PM SunshineDaydream wrote:DivineMrsM - thank you for your thoughtful response. I think it would be enough just to receive the offer (if it comes to that) and I do need to put my health and family first over my career, even if it means more financial security for all of us. I’m looking forward to the day when I am finally ready to apply for disability.