TNIBC - what a head game.

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Mamiya
Mamiya Member Posts: 432
edited September 2016 in IBC (Inflammatory Breast Cancer)

Hey all. I have been reading a lot on these forums, and much of it is very helpful as I make my own journey with triple negative inflammatory breast cancer diagnosed at the end of June 2015 (well, I didn't know it was triple negative until mid-July). As I write this I am about half way through neo adjuvant chemotherapy, with surgery and rads ahead of me. I am having such a hard time staying positive. I am also having such a hard time not being super obsessive. At first it was all new info and I really got a lot of good tips and learned so much. Now I find myself checking the boards several times a day and having a hard time living life outside my own head. I am terrified that somehow the chemo isn't really working and that I will never get a chance to feel or even be normal again. I can wrap my head around triple negative and even see some of the good sides (!) of that part but then I think about the IBC layer and get really scared again. I am 46 and have a 15 year old daughter in high school and I need to be here for her, to see her graduate and get off to college and become an adult who can fend for herself. I don't want "my mom died while I was still in school" to become part of her narrative. I feel pretty helpless because all of this seems like such a crap shoot. I have excellent doctors but, to quote my MO: "no promises." I get that nobody, even a healthy person, really gets any promises, but I am just having the hardest time finding not-terrified parts of life and I know that I am missing out on life (and how terrible is that, especially if the worst does occur, I'd have been wasting al this time). Ugh. I hold on to a few long term survivor stories, they give me hope. But man, there aren't many of them. I know, two rare things layered together, not gonna be many people to reassure me that I *might* make it 3, 4, 5 years and beyond, but how do I shake the every day fear that I won't even ever get out of active treatment, and might not make it even a couple of years?

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  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited September 2015

    First, I'm like you, trip neg IBC. It's not that paranoid to be fearing your mortality. We all know the stats, and since you were just diagnosed, you wouldn't have any idea if you'll be one of the luckier or unluckier women. I really get it.

    What I can tell you is whatI did when I was in your spot (newly diagnosed, not knowing if the chemo was going to work). I recognized the symptoms of depression starting (feeling hopeless, anxiety ridden, losing joy in life, obsession) and asked for an antidepressant. Then, once the Effexor took effect, I practiced a kind of purposeful denial. Whatever anxiety was left I used to make appointments and keep myself busy. I found keeping busy wasn't too difficult with all the doctor's appointments. My friend dragged me to movies. I knitted sweaters like a fiend. I watched Great Courses courses on everything from linguistics to nanotechnology. They say practice makes perfect, and after a while I just couldn't obsess on my possible impending death.

    Now, 4 years later, I've got it down to a science. I really do enjoy life, rarely think about death, work on improving my physical fitness (a long overdue task) and chat up a storm with everyone. So far, it looks like I'm one of the luckier ones but that could change at any moment. I was NED for 15 months with no chemo, then a new spot popped up in my spine, so back on chemo. And I'm just accepting that and plan on living my life in my 'denial phase'.

    I think denial is great as long as it doesn't apply to your medical care.

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  • Mamiya
    Mamiya Member Posts: 432
    edited September 2015

    WinningSoFar,

    Thank you. I like the idea of purposeful denial and I will try to work with that. I am going to make some lists of things I want or need to do, so that maybe when I am spinning my anxiety wheels I can direct some of that energy into those projects. I have had a bit of a double whammy as, about three weeks after my diagnosis, my primary care doctor of about 9 years retired! So, I have been thinking about asking for an antidepressant for a while (I have ativan which helps a bit at night but not completely to any degree, I still wake up in the wee hours with that feeling of dread and terror) but not having my doctor who really knows me has been holding me back (I so don't want to even meet the new doctor and have to discuss any of my medical history, I just want to go to someone who knows me and who will see that "this" isn't me and just get me what I need). I am not a "why me" kind of person, but really, I can't seem to do anything just a little bit, I can't even get "just" breast cancer (not minimizing anyone's diagnosis here, it's all bad, just saying, triple negative IBC, really?)...

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  • WinningSoFar
    WinningSoFar Member Posts: 951
    edited September 2015

    Dear Notdoneyet,

    My breast surgeon prescribed the Effexor for me. No problem. I think that having been diagnosed with IBC, trip neg, and staring down the barrel at death would make anyone depressed. Count yourself lucky that you are coping as well as you are. Later, I had my primary care doc continue prescibing it, but I've never encountered the slightest reluctance on their part to do so. BTW, I'm on the lowest dosage, but it was very effective in taking away those 'what's the use?' feelings. So, don't assume that you'll have to be on massive dosages. You just have to find the right dose to improve your quality of life.

    Yeah, I have those 'what the hell' feelings too--triplie negative, stage IV and IBC too!?!?! Does it get any worse. Well, yes it does, I keep reminding myself.

    I pray for you that you find your inner peace again. We don't know what cards are dealt to us, the only control we have is how we play them. I'd rather laugh everyday until the hour of my death than 'face' it.

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  • Mamiya
    Mamiya Member Posts: 432
    edited October 2015

    Thank you Bonnie, you are such an inspiration. I did go talk to the Nurse Practitioner at the "quality of life" clinic at my hospital and that was helpful. I am going to try effexor, as that seems to be something that has helped a lot of people and the nurse thinks it may address several of my problems (anxiety, depression, hot flashes, insomnia).

    I'd ask you how you did it (beat the odds) but I know that the answer is that nobody really knows - that is a major part of my "head game" especially with the double whammy of triple negative IBC. I am glad to know that somebody gets to be in that tiny percentage that make it beyond the 1-2 years. Thank you for your words.

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  • jenjenl
    jenjenl Member Posts: 948
    edited October 2015

    I usually have to take frequent breaks from the boards when i feel myself spiralling. At times newly dx or newly stage 4 dx bring up all those worries and don't let me move forward mentally. Just wanted to share that.

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  • 2timer
    2timer Member Posts: 590
    edited October 2015

    I wasn't dx with TNBC but mine was grade III. Cancer period is a head game. I think your MO was being honest when he said no promises. Every MO needs to say that because it is the simple truth. There are simply no guarantees this won't return or that treatment will be sucessful. And being positive about life seems impossible at times. Please don't feel alone; most of us are frightened too.

    For me, time is the only thing that seems to be helping and as time passes and you finish treatment and start to move on you'll find that you think about BC less and less.

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  • Meadow
    Meadow Member Posts: 2,007
    edited October 2015

    Jen, I understand, we support you

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  • Mamiya
    Mamiya Member Posts: 432
    edited October 2015

    All: thanks for the helpful words. I am doing much better this week. I have been taking the effexor for 5 days and while it doesn't come into full effect for a couple of weeks I can tell that it is already helping my anxiety. I also have an appointment with Dr. C for a second opinion, not because I don't trust my doctors but because it will relieve some of the doubt about leaving no stone unturned. -Julie

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  • Scwilly
    Scwilly Member Posts: 489
    edited October 2015

    Notdoneyet:

    Just a little note of support for you, and everyone else who is on this journey. I know exactly how you feel. I was dx TN IBC in Nov 2013. Now nearly 2 years later I am feeling so much better and have no reason - apart from those pesky statistics - to think my cancer will come back. I have boys 18 and 17 - with the eldest just off to the University of Washington last week. I really understand your feelings of not wanting to blight your daughters life. My son actually used his experience of my diagnosis and treatment in his junior year for one of his (many!) college essays - and his story was true and heartfelt and I feel has made him stronger. The fear doesn't actually go away completely - but it does subside. All I wanted was to get back to feeling like I was in no more danger than anyone else walking down the street. I almost feel that today. I love the phrase "purposeful denial" and will have that in my head from now on. (thanks Winningsofar)

    I heartedly agree that you should make sure you take all you can to reduce side effects and also anxiety and depression. I finally decided to take antidepressants when at the end of my treatment - its something I have brushed with for many years.

    Put yourself at the top of the list and make sure you accept all help you can. Remember you are also giving someone the opportunity to do a good deed.

    Hugs and best wishes

    Sarah


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  • cke14
    cke14 Member Posts: 7
    edited October 2015

    Hi Julie,

    I am glad you are feeling better. I was diagnosed last year and l had some of the same thoughts. My children are 18, 15 and 11 and my heart ached with the thought that I may not be there for them in the future. During my treatment I told myself that I was not going to waste my time feeling sad or angry and I reminded myself often to keep moving forward that way. I tried to keep my tears to a few self indulgent moments at night before trying to fall asleep. A year later and those tears do not come that often anymore. Keep up the faith!

    Take care,

    Margaret

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  • Meadow
    Meadow Member Posts: 2,007
    edited October 2015

    Dear ladies, I am so encouraged to hear you say that you stay in a positive frame of mind...you know, I think that the IBC ladies I have "met" here are just amazing. I have yet to meet another IBCer in the flesh...my cyber sisters are so important to me! I really strive to maintain a positive outlook too, I believe the mind and body are so affected by each other, and my mental outlook profoundly affects my health. Thank you all so much for being there!

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  • jcpriest0469n
    jcpriest0469n Member Posts: 86
    edited September 2016

    Hi there I don't know how your doing now,but it does get better. You just have to give time time. And the fear is still with me,but I also now see hope and that's a great feeling.Love

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  • jcpriest0469n
    jcpriest0469n Member Posts: 86
    edited September 2016

    Hi there I don't know how your doing now,but it does get better. You just have to give time time. And the fear is still with me,but I also now see hope and that's a great feeling.Love

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  • Milwmama
    Milwmama Member Posts: 115
    edited September 2016

    I hear ya. At first diagnosis in Jan 16 I joined Facebook groups, here, and scoured the internet for reliable information, not outdated info. I trust my docs and my treatment. I just started radiation today, have recovered from a double mast and ooopherectomy, and responded well to chemo. When surgery was complete two microscopic tumors were found so I will be taking xeloda after radiation for 6 months. I am glad to do it, despite SE, as it's a final stab at the beast.

    I do take antidepressants and take breaks from the boards. It helps. I am concentrating on me and my health and my treatment. I keep a positive attitude as much as I can, and plan for the future always. I write a blog to keep family and friends up on what's happening to me and try to throw a teaching moment or two in there. It helps with conversations later, and it's theraputic for me.

    I have two daughters 22 and 26. I also am BRCA2+. My girls will be tested shortly to rule out the game mutation. I pray that are both negative, but if not a plan can be put in place to try to prevent them getting this bastard (I lost my mom to this 12 years ago, she waited way, way too long to get help sadly).

    Keep moving forward, and remember, right now it's about you. Be selfish. If your tired, sleep. If you feel like getting out, do it, force yourself sometimes. If you don't feel like doing shit, don't. :)

    Chemo sucked. Surgery temporarily sucked. Radiation is long. In the end, you will have taken care of you and will be fine. Plan for the future, it's coming.

    I am looking forward to the older daughters wedding next year, Sturgis right after, Harleys 115th anniversary a year later, and a trip to Ireland shortly thereafter. I'm too busy to be sick ;)



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