Round 3 of treatment and trying to get use to my new normal...

rosetide
rosetide Member Posts: 29
edited June 2016 in Stage IV/Metastatic Breast Cancer ONLY

Hi,

I am 42 years old mom that has had a ride for the past 6 months which ended with me having diagnosis of breast cancer stage 4. It is my second run with it. I had breast cancer in 2009 but was "cured" then. I had the lumpectomy, FAC 6 months, 6 week daily radiation and tamoxifen for 5 years. Fast forward to 2016 had difficulty breathing and doctors would not listen to me, they said I had anxiety, I was scared, I knew something was wrong. They told me to relax sent me home with inhalers and steroids. I still could not breath. Finally I went to another hospital and that is where it all began. I had to have emergency heart surgery it was about to implode with all the fluid in the heart sac. Besides that my left lung was full of fluid and had to have over a liter removed and then of course the cancer cells swimming in all of those fluids and the growth in my right lung was the cause of not breathing for months. So here I am now sitting in my house as of May 10th I am not on oxygen and do not have to have a wheel chair. I was really bad off. I thought that this was it for me. I started praying alot and had everyone I know pray for me and I woke up on the 10th and my body was fighting. I could walk and talk. Little by little I started feeling stronger, by no means back to normal because I am pretty sure those days are gone but I am able to walk without help, I can shower alone, all those things we take for granted until we can't do them I guess lol! Thankfully I have family helping me here at home with my child and the household chores. It is hard letting go of all control and basically being the child. Also dealing with a partner that we haven't been getting along for quite a while and now with this scenario it opens the flood gates to run wild. I have had a tough time dealing with everyone around me deal with my situation in different ways. Nobody understands me even the nurses. I am hoping on here since other people are in this world maybe you will understand. I have had people react to me really weird, I have a shaved head and I have cancer so what? I say noone is guarnteed tomoroow why do you feel so confident? I get that look like I feel sorry for you and that bothers me becasue I am tough and not someone to feel sorry for. The doctore told me Friday that basically I will be in treatment for ever that is the rest of my life. does that mean what I think it does? And can your body handle all that chemo every month? Ok well I look forward to hearing from anyone that can give positive and not scary feedback please. Thank you for taking the time to read, God Bless!

Rosetide:0)

· Share on FacebookShare on Twitter

Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited May 2016

    Rosetide-

    We want to welcome you to our community here at BCO. We are so sorry for the ordeal you've endured, and for the diagnosis you find yourself facing. It's not an easy road, but so many of our members here have traveled it and can offer you support and advice on what's to come. You've come to the right place to have people understand what you're going through! Thank you so much for sharing your story with us, and we look forward to seeing you on the boards!

    The Mods

    · Share on FacebookShare on Twitter
  • indenial
    indenial Member Posts: 504
    edited May 2016

    Hi Rosetide, I am also new to stage 4 (progressed while on tamoxifen) and trying to wrap my head around this new reality! I'm fortunate that aside from debilitating chronic fatigue and some intermittent pain, I'm not "sick" or suffering the same way you are right now. I hope you quickly feel stronger. Yes, we have to be on treatment for the rest of our lives. That doesn't always mean chemo (are you ER negative?) but some kind of treatment. I'm in my early 30s and also have a young child... and I can relate to the relationship issues too, my husband and I were on thin ice before all this. Welcome, and sorry you're here, I'm happy to talk and listen!

    · Share on FacebookShare on Twitter
  • Holeinone
    Holeinone Member Posts: 2,478
    edited May 2016

    Rosetide,

    Sorry for your situation, I "get it". Just dx with liver & spine mets. I have had 4 infusions of Taxatere. My liver #s have gone down, but the spine mets showed up after 3 txs. Not good.

    I do not think anyone, nurses, family, friends can understand. They want too, but unless you are walking in these shoes, I thinks it's impossible.

    Lots of ladies here with more knowledge & better advice. Many women are on a aromatase inhibitor & it puts there Cancer into "nead".... No evidence of active disease.

    I also find everyone somewhat annoying, except for my kids. The constant ?s. The look of empathy, but stupid inappropriate comments. Friends want to come visit. Sheesh, I had chemo 3 days ago & I am in bed. I do not like being around anyone when I am sick. I don't like people buying me things. Funny, silly cards I like. Trying to handle my situation with as much dignity & class as possible.

    Keep posting, if you have time. It's been my life boat for 2 1/2 years.

    · Share on FacebookShare on Twitter
  • 3-16-2011
    3-16-2011 Member Posts: 559
    edited May 2016

    rosetide Welcome to this club no one wants to join. There is lots of wisdom and support here. Your story sounds so frightening. I have been stage IV about 18 months and have found my new normal. I manage my energy and pain with naps and lots of sleep and pain meds. I am on oral treatment afinitor and aromasin. It has kept me stable the last six months.

    I wish for you a way to your new normal.

    Peace

    Mary

    · Share on FacebookShare on Twitter
  • rosetide
    rosetide Member Posts: 29
    edited May 2016

    Thank you for your replies everyone. That is exactly what I am talking about. I have every book, dvd, fluffly thing you can think of sent to my house in beautiful baskets. My mom doesn't know where to put the stuff! Everyone is rushing to visit me as if it is the last and I am like HEY I am not going anywhere! And then of course the question in my head pops up that why didn't you want to see me when I was well? It must be a southern thing because when someone is ill everyone comes out of the woodworks. Even people that don't like me have sent me care packages and offered to take me to treatments or visit? lol! I am very thankful please don't get me wrong, I guess it is the fact that it is like a awe! I feel sorry for you your going to die today way they look at me. I have had so many people ask me when I talk to them on the phone or see them in person that if when I am posting stuff on facebook of my progress if I am in a upbeat mood for real or am I being fake for facebook? I am like I am happy! what people can't be happy with cancer?? I am still alive hello??? I laugh still??? Just weird lol! I am being brutally honest here because I am pretty fed up with having to tip toe around everyone that is non stage 4 cancer, no one gets it, I get anxiety just trying to talk and express myself because I can see it in their eyes it is blank, noone is home. I have been finding alot of refuge in prayer, the rosary, the saints journals. I need positive and understanding right now more than ever. I am very short tempered very short with my family circle and I need to find an outlet but that is proven difficult when you can;t drive anywhere and when every move you make is being watched just in case you fall or whatever. Sadly although I am not laid up weak I am still in slow motion and every day is a new finding, I have no idea how I am unless I stand up and move. I have always been a powerhouse strong high energy wide opened my body would bounce back from anything....not from this though...this is a big pill to swallow and I am grateful that I survivied my heart surgery I should have been done then God had another plan....have a great day everyone! reading these posts and others experience has helped me already. Thank you and God Bless!

    · Share on FacebookShare on Twitter
  • rosetide
    rosetide Member Posts: 29
    edited May 2016

    Hi Mary,

    It is very encouraging to hear that you have found your new normal in such a short time. I am currently on a chemotherapy of 3 different drugs, kind of the norm, can only remember one name Docetaxol. I am all 3 positive and have been told we are going to stay with a treatment of every 21 days. I can breath now so it must be working. I eat alot because I am very hungry lol! Do you feel hungry? My onc told me that there are lots of different treatment options available that this is a marathon not a 50 yard dash lol! I am feeling much more confident with this reading everyones stories. This is my second time around with breast cancer, and it came back very strange. They had initially diagnosed me with stage 4 lung cancer and then 5 days before my treatment began my cultures changed from my biopsy and they told me it is now stage 4 met breast cancer in my lung and spine. I had had my follow up for breast cancer in Decemeber and it came back all clear. In January I was in the ER becasue I could not breath, and that is where it all began. There was no tumor, there was no symptoms just bam! stage 4 is this normal? Anyone can you please chime in on this because I am confused on this my doctor explains things very kindly to me becasue he knows I am delicate and he doesn't want to give me too much information. Ok thank you Mary! I appreciate your reply.

    · Share on FacebookShare on Twitter
  • stagefree
    stagefree Member Posts: 2,780
    edited May 2016

    Dear Rosetide,

    First & foremost I hug you welcome. I experienced the exact same beginning of story exept, I had a heart attack instead of surgery and was nearly dead. See? Still here :)

    It takes up to 6 months to digest it all, regardless of the surrounding environment, people, animals, flowers etc :))) but you do get used to the new normal eventually.. No other option anyway..

    I strongly suggest you visit a psychiatrist (not a psychologist) and get your mood meds asap! Those are for these days..

    You need as much oxygen as possible.. Do avoid high mountains and flying for a while, your lungs may not handle the pressure (not really a warning all docs tell)

    Shortness of breath will continue as even a SE of many of your treatment options, so better off visit a good Cardiologist .. You may need heart pills prescribed to support your already tired heart.

    Do pick a good Pain Doc right from the start, do not expect your MO lead ypu the way.. Their priority is to keep you alive, not how you feel. Experience is talking.

    Nobody but we can understand you. No more energy to lose to explain to anyone else.. Even your MO cannot know. Those without MBC don't get it. We here here for all the support you need, all the answers you are looking for, as a part of your treatment team.

    You should be best friends with your Pulmonologist . Period. And please be him/her a good one!

    Watch your diet. Lots have been suggested before. Please take your time and read past threads. When I first joined the forum, I read each and all thread related or not to my condition chronogically and learned lots from experience of sisters, many of whom I never even had a chance to write hi to.. May all RIP.

    Ignorance is still bliss for me.. I wake up each day and just cherish the moment, mostly do just what I enjoy. Not impossible this state of mind. A bit patience ;)

    Always welcome to PM me.. With just anything. Just don't call my country Turkey please haha!! It's Turkiye and not eadible:))))

    Huge hugs

    Ebru

    · Share on FacebookShare on Twitter
  • artistatheart
    artistatheart Member Posts: 2,176
    edited May 2016

    Yep Rosetide, we all totally get what you are talking about as far as how super weird people act when they find out about your illness. I got slews of cards, letters, gifts ect. in the beginning. Good intentions but I found the attention annoying and those people quickly faded out of the scene. My best friend has abandoned me, where as people who have never given a rat's ass about me before have suddenly crawled out of the woodwork and want to "connect" whether in person or on Facebook. I'm never sure if they feel guilty, obligated, or just want to be able to claim we were "friends" upon my demise. Those are the ones I want to tell to &*%$# off quite frankly. Luckily I have learned to ignore them. People are going to say hurtful, inappropriate, ignorant things. They will ask extremely personal and stupid questions. I too find myself thinking about some people, "Don't feel so confident in your healthy self, a meteor could strike any second!" It all comes with this scourge of a disease and why I am thankful every single day for this place I can come to talk with people who truly get it.

    · Share on FacebookShare on Twitter
  • rosetide
    rosetide Member Posts: 29
    edited June 2016


    HI artistatheart!!!!

    hahhhahahaha!! You made me laugh, outloud! Thank you! That is spot on what I feel, you get it!! WOW! Someone gets it YAY!!!! I couldn't agree more. I know there is one chic that hates me seriously I know she does and she sent me the nicest stuff and is begging me every week to come visit me and personally I know it is just to come and stomp on me while I am down lol! or that is mean of me to say, I guess it is just that, even when I was ok you weren't all that nice to me I don't think I can handle what your gonna dish when I am not 100% lol! I have completed round 3 of treatment and had the dreaded question asked or told I guess, my nurse was like YAY! you have completed 3 treatments almost done! I was like, I am never done remember, read my chart lol! She gave me the sad eyes like you dead person walking and went on her way, that makes me angry! I know she doesn't mean bad, what do you say really, I mean it sucks, it is crap ok ahahhahahahah!! But it is what it is, and if this is what God has chosen for me I have to cherish it and make it special because I know I am here for a very special reason. I don't want people to minimize this to a "poor thing" I am not a POOR THING! I am a fighter and if they knew one second of what I have and what I am fighting every second to be here up right they would not be calling me a "poor thing" hahaahahahah!!! I am putting a birthday party together I throw every year at my house for about 20 kids or so, I go all out for them, I have to have help this year and really don't know how it is going to go since I can't be running around doing every single thing...hoping for a great turn out even if it isn't my picture perfect way that I love so much, what is important is that we are all together and everyone has fun! I am thankful I am still here is my concern this year, myyyy myyyy myyy how things change lol! please don't be a stranger I need people that understand in my life to keep my sanity...thank u! ROSETIDE:)

    · Share on FacebookShare on Twitter
  • rosetide
    rosetide Member Posts: 29
    edited June 2016

    Hi Stagefree!!!


    Thank you for your time and responce! I have taken all your notes down. I appreciate all of your advise and it is great! I have only been seeing my oncologist and going to treatments and I don't really want to see anyone else lol! I am hiding out so to speak to recoup from the drama of hospital stays and tons of doctors probing and poking lol! Unfortunately I am not able to reap the benefits of meds because they have adverse effects on me, I did try them and it was a nightmare, they were to calm me down and they freaked me out! I eat as healthy as I can, my mother takes care of me. She is european so she cooks everything homemade and healthy. I am only using promethazine and diphena something for diarhea. The promethazine is great for my nausea and boy if I don't stay ahead of it wow! that is not fun lol! Learned the hard way with that. The diarhea has been a problem this round I think because the chemo is settling in. I have had to take a few more pills this time. I am learning as I go with this, my doctors and nurses don't share much information I am getting alot of my knowledge off of this site reading the articles. Although this is my second diagnosis this is nothing like before because before there was a time limit lol! This is different. Every day is a task of learning and trying to take in what is going on around me. If I get a small grip on this daily I think I will be ok. I have to be. Right? lol! Thank you for all your information, I truly appreciate it. ROSETIDE:)

    · Share on FacebookShare on Twitter
  • MustangIA
    MustangIA Member Posts: 177
    edited June 2016

    Welcome, Rosetide. I am mostly a lurker, but wanted to share a bit of my story. I haven't read all your responses so far, so I am sorry if it is repetitive. The beginning of this roller coaster is so scary, but you will find that you will settle into that new normal once you are feeling a bit better. You have had a time of it, for sure! Unfortunately, yes, we will be in treatment of some sort or another for the rest of our lives, but that life can go on for a good long time! You may not always be on IV chemo if you are ER/PR positive (looks like you are as I scroll down a bit). I was diagnosed originally stage 2b in 2007. Fast forward to 2011 and I was diagnosed metastatic with mets to ovaries, omentum and peritoneum. I did Xeloda (oral chemo) for five months, got to NED (no evidence of disease) and switched to a hormonal therapy, Femara. I was on Femara just under four years and remained No Evidence until February 2015 when I had my first bout of progression. I tried a couple different treatments last summer (Afinitor/Aromasin - failed, and Xeloda again - couldn't tolerate the side effects this time) and ended up on IV chemo (Abraxane). I was NED again after three months. Did three more months of Abraxane and then switched back to a hormonal - this time Faslodex. I have been NED again for 6 months. I will hit my 5 year mark of mets diagnosis on Monday, June 6th. 9 1/2 years from my original diagnosis. I am working full time and feel great right now. I know this could change on a dime, but I enjoy every day and do what I can when I can if that makes any sense.

    While I lurk here more than I post, there is always someone here to support you or answer questions if you have them. These women and men are like family now - connected by this beast we have been dealt. We've got your back.


    · Share on FacebookShare on Twitter
  • artistatheart
    artistatheart Member Posts: 2,176
    edited June 2016

    Rosetide, Glad I could help and gave you a good laugh! I know I sometimes sound bitter and angry over these issues, when really I have gotten used to all sorts of weird responses and can pretty much roll with the punches now. Although there are definitely people who I purposely avoid or downright ignore. Funny thing about finite time is I now feel more entitled to pick and choose my company with no apologies.

    · Share on FacebookShare on Twitter
  • rosetide
    rosetide Member Posts: 29
    edited June 2016

    Hi Artistatheart!

    I couldn't agree more AGAIN lol! This weekend was the birthday party weekend and it went off without a hitch! And there were people that I invite every year. And you know what? I could NOT STAND one person for the life of me!!! lol! I RAN from them every time they came in a circle I was talking in. I could not handle their words, their comments, none of it, before I would take it listen to all their garbage and smile. NOW hell no! Lol! I don't have time for that...lol! I was not rude I just could NOT hear it. lol! So yeah, I am at the if I am talking to you is because I really, really, really want to phase lol! How are you doing? I am doing today what seems normal, I don't want to say too much it can change lol!

    · Share on FacebookShare on Twitter
  • rosetide
    rosetide Member Posts: 29
    edited June 2016

    Hi MustangIA!

    WOW! What a story! Thank you so much for sharing! I have been told by my onc that there are several treatment options to try if what we are doing now doesn't work and after reading your story his words make more sense. You also said you work full time, that is fantastic to hear! I am learning with this new normal that it is all in slow motion and in due time. Don't get in a hurry about anything and just relax about it. I am leaning on God so much that I almost feel guilty for it, almost lol! I need Him more than ever and I find myself happier than I have been in a long time. I love meeting and sharing with people like yourself it makes this journey I am on ok and not so bad because there are many positives that I am experiencing and I wouldn't be able to do so if I wasn't stage 4. I am embracing this new stage in my life and I love hearing stories like yours that show that whatever your given as long as your fighting there is a way! I still remember the advise of my first onc when I was diagnosed the first time, he said, remember NOONE is guaranteed tomorrow I can walk out of my offie and be hit by a truck, so don't think about tomorrow because all we have is today. Thank you for your words and I will be on here moaning and groaning I am sure lol!

    · Share on FacebookShare on Twitter

Categories