I have put off doing this because I didn’t know where to start. Here goes:
When I was re-diagnosed Stage 4 Metastatic back in April 2016, I dove in head first as the Warrior that I am and vowed that I would “deal” with this crap diagnosis and not let it break me. Well, I have done a darn good job of doing just that until a week ago.
A week ago I started crying and I mean crying hard and all day and night long and this continued for 5 1/2 days. Yep, it was my week off the Ibrance so I was already fatigued and more vulnerable. There was a trigger when a family member said something to me about her own aches and pains from an ailment that she has all the control in the world to prevent said aches.
This combined with the fact that 3 direct immediate family members have been diagnosed with cancer in the last 6 months and I have willingly been there thru every surgery, appt, follow up, etc for the first 2. My only living brother’s wife goes under the knife tomorrow morning for a breast lumpectomy that is a small tumor and all indicators suggest that with some radiation and hormone blockers and she should be good to go. Thank the Lord.
I have lost 3 members of the “Living with Cancer” support group I belong to and have lost a truly dear girlfriend that had what we all have.
I am not able to attend tomorrow mornings surgery to sit with my little brother while the love of his life is under as I had to have oral surgery myself this morning and my white count of 1.3 doesn’t allow me to sit in hospitals with open surgical wounds in my mouth. This kills me😢
Sorry I digressed:
After day 3 of my cryfest and showing up for the Wednesday support group on Tuesday, I reached out to the social worker at the oncology clinic.
I spilled my guts through the tears, via phone, to this wonderful woman for over an hour and she was so compassionate and full of great reasons for my breakdown and some ideas I will be pursuing going forward.
I then dug up the courage to call my oncologist and ask for a CT scan sooner than later as I have been ignoring the nagging discomfort in my chest where the tumor had been found two years ago. I was grossly patronized by one of his nurses (she is a survivor and “I know how hard it is Honey, we always assume the worst is wrong with us” “the insurance company dictates how often CT scans can be done and they won’t pay for you to have one just because you want one”)
Note:I have not had one since 7/17. I am not a chronic whiner that calls the doc at every sneeze.
I refrained from snapping her head off 👍🏻
She called me back later, tail between her legs and said my doc wanted to see me the following day. I am happy to report my CT scan will be done tomorrow and I will have results on a Thursday morning at yet another appt with my oncologist.
Sorry for the length of this but it feels good to share this part if even just one of you has been or is where I am.
I met with my Oncologist on Friday morning, tears and all. In 20 years this man has never seen me cry (first round of BC 1999 and re-diagnosis 2016).
He told me that what I am experiencing is completely normal and each and every person goes thru the 5 stages of Death/Loss/or Terminal Diagnosis. There is an “ideal” order of going thru these but nobody he has ever met goes thru then
1-5. He referred to a psychiatrist, Elisabeth Kubler-Ross, that wrote a book in 1969 called On Death and Dying that covers the 5 stages:
It would appear I grasped Denial, Bargaining with God and Acceptance just fine and this last week the last two hit me HARD! Friends, Anger and Grieving are not a great combo.
I will read the book with an open mind, I will be seeking out a counselor that it not a “survivor” but rather someone that has someone in there life with a stage 4 diagnosis or has perhaps lost someone to a fatal illness and I will STOP being the go to for my family and friends to get them thru their cancer journey. Apparently this is a very bad idea for ones psyche as it forces us to continually relive our own diagnosis etc.
Thank you for listening and I hope at least a couple of you can relate to my situation. We talk a lot on here about fear, medications, side effects and I think it would be helpful if we can dive a little deeper into the reasons for our feelings and how we each overcome them.
I plan on hanging around on this Earth for a very long time and am hanging to hope for a cure. As soon as I quit crying that is, of course lol
Written by
BeckyHobson
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I haven't "been here" as long as you, having just been diagnosed with Stage 4 in November 2017. However, I totally relate to your emotional description. There are days when I feel overwhelmed just knowing that my life, since diagnosis, will never be what it once was, free of daily medications, periodic aches, periodic fatigue, and suppressed anxiety.
From the beginning, I never assumed the "Why me?" attitude that accompanies any bad news, and yet I still find it difficult not to miss the carefree life I had just five months ago. My hope lies in "sisters" like you who are two-year survivors or more. It's the uncertainty that is sometimes unbearable and knowing that we'll be waiting for test results for the rest of our lives.
My hunch is that the "big cry" is what we all need at different times during our journeys. And you have reminded all of us that maybe that can be therapeutic. Bless you for sharing your status and providing a "wake up" call to everyone! XXOO
Bless you Becky! I agree you need to focus on yourself more and not be the care taker for everyome. I need to do the same when it comes to my family. Somehow I need to distress more and take better care of myself.
Thank you LeAnn, I had worked myself into a spot that I felt that old overwhelming stress I used to live with before I retired and it scared the heck out of me. I honestly think that stress plays a huge roll in all of this cancer stuff.
First I want to say how sorry I am for all your losses I had the massive crying jag , then it was once a day ,once a week, and now not so often. But I do find that even happy things can throw me for a loop. I think the ibrance and letrozole mess with our emotions too. I tried 3 different support groups, and it only made things worse, I have a friend with a similar diagnosis and just talking to her is much better. We are both optimistic and that's what I need. As women we are always trying to help others, we put them over us, but now we've got to put us first., which is hard to do. This sight is so good because long term survivors give us hope and we are encouraged to think New meds keep coming along. Live each day and don't listen to the naysayers. 💞🙏
I guess I needed the breakdown to finally happen. I reached out to my best friend after meeting with the doc and told her what was going on and she was actually really happy that I had finally gotten here. Everyone has been worried that I internalized it all and that they all needed to live up to my “strength”. I have to remember that is what we have friends for right? Through the good and bad times no matter what. Her and I sat for a couple hours and just cried together
So sorry for your losses. You seem to have had quite a plateful for such a long time. Just doesn't seem fair.
Text book stages are good guides to know what/how you are feeling are part of the norm. Please know it is always OK to cry whenever and how often you feel necessary. I think your oncol should know you are on a 5 day roll, and prescribe some anti-depression or anxiety meds.
Stay with reaching out. You said you found a compassionate voice on the phone. There may be others that you can also find comfort from. The one on one counseling is not necessarily with someone that has been through it. Personally- I think you need to live it to talk about it. I have been given a local hotline number that is 24/7. I am waiting for my "person" to contact me, but I am secretly relying on her to lean on. I'm sure where you live, there would be similar services. Keep trying to find them. It could be the way for you to see some light.
Thank you! I did go to my oncologist and we talked for a long time. I have been on a low dose of celexa since early 2000’s after my first round of C.
That phase where every headache was a brain tumor lol. Only 40mg a day and I’ve tried to get off it several times but nope I’ll keep taking them.
He agreed that I don’t need more medication as he doesn’t see it as depression but rather dealing with my diagnosis finally. I will definitely be seeing a counselor and continuing to talk openly to my hubby and friends as my thoughts arise vs suppressing them as I have done
Bless you Becky! Ive been holding it in and trying to be up for everyone (my only child and husband) but it’s taking Irs toll on me. I have severe heartburn and generally feel down most of the time. I am a master at hiding my emotions which is so unhealthy I know. If I allow myself to go to the dark place I think I will honestly have a nervous breakdown. So I know I’m in denial and disbelief this has happened. I hang on to words like “this is a chronic illness”.” You can have decades” I’m planning on seeking counseling as I know I need to deal with this. It sounds like your more grounded than I and I hope to get there.
I’m still looking for support groups as I have no one to talk to. I don’t “look” like I have stage 4 metastatic cancer. Have my hair (except eyelashes) I work full time, and have a ravenous appetite. A friend said to me last week, “I’m so happy they found your cancer in time.” Mine is diffuse throughout both my lungs and in my mediastinum and rib. Entering my fourth month of knowing and I’m finally leaving denial and entering depression.
Thanks for sharing. It helps to talk to others on the same path. No one else can understand. ❤️
Amen to that!!! The WORST is when you know people know your diagnosis and it is a chronic illness not something we are getting through. I too get up every day and dress nice, do my hair, put on a face (minimal most days but still) and do my thing. I don’t want to look sick!!
I have given up on correcting the same people over and over. That look they get when you tell them you “aren’t over or through” anything and that you will live with this cancer for the rest of your life until they find the cure. Like you punched them in the gut-like we feel when they say it.
I say Thank You! When they compliment how great I look and leave it at that now.
Let those tears out when you need to. That is my goal now too. Let them fly in a safe place
I think you and are very similar in how we are handling this. I also have a hubby and one grown daughter (26 and followed her dream job to CA)
I promise I am no more grounded than any of us but I have sure put up a good front til now. We will continue this journey together. This group is the best group I’ve found so far. We all can relate to one another
Hi Becky, I am so sorry for what you are going through. It sounds like so so much, as it really is. I would suggest, (as I do for everyone!) to learn how to meditate. It is a practice of learning how to get to the still place that exists in each one of us, and experiencing (as much as you can) life from there. This allows clear vision of situations, and helps us not add insult to injury by either constantly living the past or constantly living the future. I also had a warrior attitude when I was first diagnosed, telling the universe and anyone else who would listen that I would be cancer free in a year, then went on to do just that. A year came and the fact remained that still I have cancer. It was a disappointment to say the least, but just a fact. Then I went on to live, just as I had found myself, a cancer carrier, but so much more. Any moment I could identify as any one of the totality of who I am; a wife, a mother, a scientist, a dog trainer.....and enjoy each one of those things that I am without carrying over the sticky idea of cancer carrier. I believe meditation has helped me do that. It could be worth a try for you too. I wish for you, and all your loved ones a wonderful wellness. Michelle
Great advise! I am educated in Meditation and Journaling and that has gotten me thru things in the past and worked well.
As I told the social worker at the clinic-“I don’t honestly know what I would visualize that would work”. She agreed that sometimes this is definitely the case and that I have a lot on my plate and a counselor would be best to help.
Super Strong believer in Meditation and I know I will get back to the place that this makes sense for me 💕
so glad you have those tools! may they serve you well!
Hi Becky. So sorry for your discomfort and sadness but so glad you find release in reaching out like this. I too have dreadful periods of depression (and the anti depressants my oncologist gave me for one period started giving me terrible sweats and grinding my teeth to the extent my jaw now aches - have stopped taking them!). I suppose we all have the problem that we live a life of total uncertainty - I call it the rollercoaster and absolutely loathe it. However groups such as this which allow one to vent and which have so many good ideas and sympathetic ears are worth their weight in gold to us.
Keep on keeping on May we all find a level of acceptance which will allow us to live while continuing to fight the beast.
Hi Becky,
I am so sorry that you feel so bad. But you seem to be dealing with a lot right now. If crying for a week or more gets some of it out cry. I have found you can not be there for everyone even if you want to. I also lost a friend to cancer last month. When someone tells me how good I look, I say thanks. no one knows what we are thinking. I have pain in my back, so I can do things for a while then it will burn and I need to sit down for a bit. Then I get up and do something else. I was diagnosed with stage 4 18 months ago. I have been feeling so alone sometimes, no one really wants to know how you feel because they don't want to loose you. I my letrozol stopped working a few months ago and I didn't even tell my kids. They are all grownup . But I can see they don't like to think about it. I am starting a new one now called Faslodex. Hope it works. I joined this group this month and it is the best thing I did. You can say whatever you feel and not be judged.I hope you feel better when your crying has stopped, but do not feel guilty about it. Think of yourself first for awhile. I have been emptying my house out, painting rooms making a will and funeral arrangement since I was diagnosed. Then I read some of the letters on this group, and think maybe I will have time to relax and enjoy some time. When you hear women have been changing meds and treatment for 20 or 14 years it helps. I pray that your Ct scan comes out good. I will be thinking of you. Please give an update. We do care and want to hear whatever you want to say. Good or bad you can let it out here. Try to find some happy people to hang outwith HaHa I know. Hope you feel better soon .
Barbara, I can so relate to the getting rid of stuff lol. I am by no means a pack rat and now am questioning if I have gotten rid of things my family might have wanted? Oops, oh well lol
I have had it for two years now so I am at the point where I spend the time I want doing my thing, sewing, puzzles, travel and more travel. I probably should finish those taxes sooner than later. Tick tock... lol
The changes to the Will-we’ll they are half done where I left them a year and a half ago. Too depressing to dive back into that.
See you can laugh! I am so afraid of sitting in my recliner, that really takes the pain in my back away. I have literally painted all my rooms 1 wall sit, 2nd wall sit etc. even took up painting my kitchen cabinets, way against my husbands wishes. They are good cabinets. They were in good condition but I spend time watching home improvement shows and think I can do what ever I want. Painted them Paris gray finished with coat of wax. They are beautiful. Even he admits. My will is done but cannot get my four kids to tell me do they want a one day wake or none. See this is where I go after I cry by myself. I push myself so I think about it. My house is looking good, still throwing things away. Kids today do not want China, there own childhood things. They leave home and we have it.I find the best thing I can give them is look good, I invite them to get together more often. No fuss we order pizza, sandwiches. They all try to get together more often lucky two live in my town. One 1/2 hr away other 1 1/2 hr. I see you keep busy too. So if you get a week of crying good. It will get you ready for your next project.
Ok-maybe if all of us like minded women put our heads together we can actually find the cause and cure for this thing! I swear I relate to so many on here. My nickname for years has been Becky Villa because I am always tackling some DIY project just like you. I bet the kitchen looks amazing!!! I painted the bathroom vanity, walls and installed a floor and new molding in there last year. I don’t like to complain about my back pain and that project made me realize that I can’t tackle big Home projects any longer so I’m sewing and little bits of gardening here and there. My husband forbids me to get on a ladder anymore and it takes all my will to not change just one light bulb or dust the tall stuff. So grateful he does it for me. Wish you could share pick of the cabinets. Color sounds beautiful 💕
So, wax? Like minwax? Does that hold up better than eurathane or are we using the same thing lol
I used Annie Sloan chalk paint on the cabinets. No sanding,priming,just make sure there is no grease. I put two coats of paint. You don't even worry how you paint, straight back and forth. Just paint all different ways. When dry you put a clear was on with a brush wipe off excess. You can leave the Matt loose or buff with a rag. I did not buff to shine. I wanted a low gloss look. Wax will turn hard in about a month. But you can use the just try not to scratch until cured. My cabinets are over 40 yrs old nice dark oak.but all wood and worth the work for a new look. I put new brushes silver hardware. They look great. I also use it on old small tables I have. I did a sofa table in a bright aqua. Made living room wake up. It's fun and keeps me busy. Until I hurt, then I sit. Took me three weeks to do cabinets, lots of doors. But my husband helps when I need it.My kids get amazed at what you can do to old things.
Love this! I may have to try the chalk paint in an old curio cabinet (hangs on the wall) that a friend just handed down to me. Total 70’s thing at the moment and that won’t work since I’m more of an antique buff
This paint is great for Furniture. I did full wall built in. Shelves on top cabinets on bottom. I used charcoal Annie S, then I put her black wax. Buffed to low shine. Black tv in middle shelf. So attractive. Google Annie Sloan paint. You will see what she does with old furniture. You can also sand edges for antique look.
Becky,
Thanks for the great post, very honest, with helpful info...
I "enjoyed" Kubler-Ross's book, and would also recommend The Tibetan Book of Living and Dying. I found that it gave me a much greater understanding acceptance of death which really helps minimize my stress about this whole ordeal.
FYI, I almost always spend my week off Ibrance just bursting into tears; have done so for 3 years, so in my case I view that as kind of "normal", something I chalk up to fatigue, especially since it resolves itself each cycle.
I agree with some respondents that you are probably taking on too much, although sometimes doing for others is so fulfilling and brings us happiness, so it's a tough call on that one! One rule that I always follow is that when I'm tired, I rest. Period. That's listening to my body which is working hard to keep these tumors at bay, its number one job!
I wish you the best with your doc appt tomorrow; sending good vibes!
I’ll check into that book too. Im not the least bit afraid of death but it is the fear of leaving my daughter and husband. My biggest fear is that my daughter will be angry at me for not trying hard enough. Crazy right? My husband says she isn’t in denial and gets the big picture but she is such a strong girl with me and just says “only positive thoughts Mom” “the doctor said you are going to be around a very long time”. Looking to find clarity through reading and others input on how best to approach her about this.
It would/will be great if I can keep my emotional meltdown to off week.
It sounds like we have the same daughter and I just recently said those exact words to her....that I feel like she thinks I don't try hard enough! Of course she assured me that wasn't the case, but she is very holistic and does juicing and all organic (which I do too) but I'm not that strict and weekends I'll have things like pizza and even drinks sometimes. She also is super positive and constantly sends me inspirational videos and positive advice and articles. I love it and her for it but sometimes I do feel like this is getting to me. I was just DX in Nov 2018 but I have a pleural effusion in my lung that I will be getting drained for the 5th time tomorrow. My most recent scan showed spread to my ovaries, 2 tumors about an inch each. My fear is not having as long as I originally thought and what to do?? I still work fulltime, as I need both the money and the health insurance. How do others on here deal with that? I would love to retire, I'm 62, but not enough money to do that. Sorry if this is a rambling post, it's my first one but your daughter comment pulled me out of just stalker mode to actually reply.
This thread has struck a chord. I see myself in so many of these posts. I was hardly a warrior when I was diagnosed in 2014. I broke down. It took me a few years (over 2) to stop crying daily and acting like everyday was my last day on earth. I also had a will done, started cleaning out the house...finally I just exhausted myself with depression and anxiety and started to climb out of it. For me, it takes therapy, meditation, Buddhist readings and retreats, and this board. It is one thing to have the people who love you empathize and support you, but it really means more to share with women walking this walk. So far stable almost 4 years. Living more fully in the moments, or at least reminding myself to.
You and the others that have lived this journey 4 yrs, 7 yrs, 10 yes, 17 yrs and I think I recently saw 20 yrs!! This is what makes me Strong!!! You show me that this is all worth it and keep the fire within me burning bright!!!! Thank you fellow Warriors as someone on here calls us.
You Rock! You voiced what we are all going through and affirmed that we are not alone, we are fighters, we are sad and overwhelmed but we have hope!!! I too am the “go to” person when someone finds out they have cancer or know of someone who does. It does make me relive my own debacle. So I’ve been selective with who I can help and tell others that it’s too much for me to deal with. So far everyone has been understanding. So cry when you need to, but don’t stay in that hole. Seek the help that you need and share with us when you can. We love you and we understand.
Amen to everything you said Becky!! I am going through the same thing right now. I think its mostly because they had to switch my anti-depressant which i had been on for 12-13 years because it conflicts with some of the drugs I am taking (I am on a clinical trial). The transition is sucking and while i know i need to have patience I am over this emotional imbalance right now. I am actually at my doctors now - i have to do these tests for the trial - so i am here about 5 hours. Anyway, he is going to change the dosage so I pray that helps. My son's wedding is coming up in April and I want to feel like my old self or at least a better version of how i feel now. I think I am handling all the trial drugs okay if i could just get balanced emotionally. It's just a lot of crap we all have to deal with and its good to vent and with women who understand. Hang in there.
I am so grateful to you All they have goiter thru this crazy week 💕
I got the CT Scan results today at my regular appt. Great News!! The tumor isn’t even visible as a tumor any longer. We are so relieved. The radiologist talks a whole lot about the amount of scar tissue that is most likely a result of prior radiation, my LAT Flap reconstruction done in the early 2000s, and prior surgeries. This can all cause the discomfort I feel and the fact that the apparent shelf life of implants is around 10 years and this thing is well beyond that.
He wants me to see a reconstruction surgeon that sits on their panel. My oncologist really likes this surgeon because he will actually run tests (mri) and give the case a lot of study and thought before jumping to do surgery.
I’m not big on the surgery idea because I have this strong, uneducated, belief that if air gets to cancer it wakes up and goes crazy. It was behind this old implant sooooo?
But enough about that!! Great News for my day and my wish is that all of you get more prayers answered as well !!
I came home, ate lunch, took a nap at 1:30 and just woke at 9:30 tonight lol
I was first diagnosed with breast cancer, Stage 3C in April 2010. I was then diagnosed with Stage 4 breast cancer in December 2014. My oncologist stopped doing PET scans after 3 years because my tumor markers were “normal” and I had no pain. I was given a 23% survival rate by my surgeon, who I lovingly refer to as Dr Doom and Gloom”. I was getting follow ups though ever three months. After my oncologist said no more PET scans, I followed my instinct and went to another “general oncologist” who was able to get a PET scan approved in year 4. Year 5, it was declined but he was able to get a CAT scan approved, which showed the cancer had spread to my lymph nodes behind my kidneys, which is not a place breast cancer typical spreads first. The biopsy did show it was a recurrence of my original breast cancer though. Of course, a PET Scan was then approved, which showed the cancer had also spread to my bones. I went back to my dr, who a breast cancer specialist at a major cancer center, we had words and I told her that the insurance company protocols were bulls*hit. Luckily Ibance was approved 3 months early by the FDA and I was able to get on it, after fighting for 2 weeks with my insurance company and threatening to sue and go to the media because they did not know how to “code it”. I was on Ibrance for 21 months. My white blood cell count was low at times and I was tired, but it was manageable. After the 21 months, the cancer spread more and I was taken off of Ibrance. I then went on Tykerb for 3 months, which did not work, my cancer continued to spread. I was then put Affintor for 3 months, which did not work. The side effects of those 2 medications were horrible, mouth sores, extreme fatigue, my hands and feet turned brown, I felt like I was walking on jagged stones. In July, 2017, the cancer spread to my liver and most of my bones, but “it” changed to HER 2 positive, which was diagnosed after a liver biopsy. My tumor markers did not go up significantly until it went to my liver. I have some pain, but not much, despite the cancer being in most all of my bones (knock on wood). I am ER positive, which remained the same. I then was put on IV chemo finally with taxol one week, taxol, perjeta, and herceptin the next week with one week off. In December, 2017, my PET scan showed “no evidence of disease”! My hair fell out within weeks this time. I was so exhausted. I went to my family dr and told her I need a remedy for this NOW! She did research and confirmed with my oncologist that a low dose of adderal would help. I am an attorney with my own business, kids, etc and I have to work every day. I was put on 30 mg of time released adderal and the difference is amazing. Of course you are going to be depressed! This sucks so bad! I originally was put on a low dose of Effexor for the hot flashes, but my family dr raised it because having cancer is frigging depressing as shit. From the day the cancer returned and my oncologist and I “talked”, she had been doing PET scans every 3 months. You are in charge! Insist on the scans, follow your instincts, fight your insurance company! You do not have a cold, you have cancer, tell them to get their s**t together or go to a different oncologist. I got a 2nd opinion. I told my oncologist I was and she said she was not insulted, do what I wanted. Please cry when you need to, God knows I do, Effexor or not, but also know you are not a statistic! I tried to read books, but really no one understands but us. I get angry at family members and I get angry when my sister/paralegal complains about feeling sick and calls out of work. I know I should not, but it is natural so please do not feel bad about that. If you need to talk, let me know.
Thank you so much for sharing your MBC journey. I fought BC 1994, when I hit my 20 year remission mark I thought I could let down my guard. In October 24, 2018 I recieved the shocking news I had MBC to bones and my left eye. I descended into the deepest darkest depression that has lasted for the last five months. It left me more terrified than the cancer diagnosis. I was fortunate to find the kindnest psychiatrist and he and I worked as fast as possible to find the correct medication to lift my depression along with a compassionate talk therapist.
You are a warrior.
Thanks again for sharing your experiences. I feel less alone in my journey.
Joan, I am beyond happy for you that you have found the right therapist!! I think that is a big part of the battle right there. This online group has been wonderful for me and I am interviewing therapists to find a good fit.
Becky, good for you for sharing so honestly, so vulnerable. When l got diagnosed with metastatic breast cancer (July, 2017) l went on a mission to learn more and more about death, dying, and my own FAITH experience and tradition. I recommend to you the following books: On Life After Death by Kubler-Ross The Grace in Dying by Kathleen Dowling Singh (author is a hospice worker), Immortal Diamond by Richard Rohr (author is a Catholic priest - but don't let that turn you off he is a wonderful spiritual guide and is followed by people of many faiths or no particular faith. contemplative.org is offering an online course on death and dying (l can't remember the exact title right now but it looks like it is going to be very good. Good for you for standing up for yourself, I'm sorry for your experience with that nurse and others - it's way too common an experience for many of us. You may not be ready for all this yet, hang onto the suggestions and when you know that you need this you will be able to access the resources. Take care my friend, Momo.
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