Life does not end with a stage IV diagnosis (really!)
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It's sooooo HARD! I was doing mentally so well the last few weeks and now I'm a basket case again. Rereading all my medical reports and looking for something bad. Why do I do this to myself? So yesterday I talked to a doctor who said pink blood in stool is not a worry it's surface blood it's the black stuff mixed in the stool that you need to worry about. So my body this morning delivered....now I need to run to the oncologist to get a diagnosis of colon cancer......deep breath. What's next Alzheimer's .
Funny people who know me say I'm the most positive person they know...with everyone but myself.
If I keep this crap up it will be anxiety that kills me not stupid cancer.
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Thanks texasrose53 the need to hang onto others words is huge and so appreciated. I know what you mean about that pregnancy feeling. I had three children and when I was pregnant my body felt invincible. I'm trying to remember that feeling not the hormones crying bit.
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For me the fear stuff gets intermixed with the subtle is my body trying to tell me something thing. Granted I was the person who basically rationalized the head symptoms I was having until they were REALLY bad. So now, I report every single thing. But for instance right now, I have a cold and my head hurts and my space relativity is having an issue (like I pulled too close to the gas pump etc) and while intelligently when your head is full of cold, you ARE off in the head LOL but since I had a brain tumor, a headache is never JUST a headache. But then theres the little voice that says what if its NOT ?
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I am silencing that little voice today. Making healthy lentil soup and focusing on everything else. I will not grab my boob walking the dog today. I swear my neighbours here in Vancouver probably think I'm the weirdest person.
I'm taking so much immune pumping vitamins that I haven't had anything as far as a cold or flu for three years. So I imagine the first sign of something will send me over the edge.... Laura I'm also a person who has always ignored pain and dealt. Not anymore I'm the biggest hypochondriac around yeah for me.
What's very interesting to me is the change in my character. I was always very rushed and busy and judgemental . Totally the opposite now I take my time and try to breathe and find everything so heart achingly beautiful. To bad that we have to go through something like this to get clarity.
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Wendy, the first time around I was all rah rah warrior ! I refused to lie in the bed because "sick ppl lie in bed" and I was RIGHT back at work the second I felt better. And in fact I was going on when I was undergoing AC/T the couple of days before my next infusion. I was also still running all my errands and more than once got sick in a store, or in my car and couldn't get out for a while etc. But nooooo I was going to keep going.
With the mets diagnosis, its a completely different way of being. I'm working on its OK to spend the day in bed if that's what my body needs and I'll be up and about tomorrow. What a hard way to learn to slow down and savor !
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Lauralind and Wendy,
I wish I could make myself stop and smell the roses like you. I feel if I stop moving and accomplishing something I will slide straight downhill. I have contemplated a way to stop working so I can focus on some things I never have time for but am afraid to change my benefits. Also work helps me keep my mind from going to the dark thoughts, so maybe too soon for that. But who knows what's too soon? That is what makes this hell on earth for me. I am trying to wake up every day and tell myself "I'm still here"... but it is a constant fight.
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Artistatheart....I hear you loud and clear. I've come to the realization that I can determine how I feel mentally. I can hang and cry all day (very well) or I can get stuff off my list and enjoy the day. The former gives me diarehaa and stomache pain and big baggy eyes. The latter gives me energy and joy and fun . Why do we always chose the former. We could have been run over by a bus yesterday but we weren't we are still here.
We are here dammit and we count and we should be heard. The fear is always there I know but push it into the shadows and you waltz out into the sun.
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Hi Wendy,
I'm the woman who started this thread. I'm in my 5th year of NED and just had a clean PET on Saturday. In the beginning, the emotions are harder to control. Eventually, you may realize that you haven't got a great deal of control over the physical course of your disease, but you can control the mental aspects (time, therapy and drugs can help 😜). Stage IV is a shadow over all of our lives, and never does a day goes by when I don't think of it, but living has become more important to me than dying. The dying will creep in at some point, but I won't give in to it a minute before I have to.
Caryn
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Wow Caryn NED for five years that's so great. I can only hope in my future I can enjoy something similar. Thank you for starting this thread as well it is helping soooo much.
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Caryn that makes sense. I'm still in the infancy place of stage IV and looking at all the things I will likely never do again because of physical restraints and trying to figure out what the hell to do with myself now. I also get aggravated at the days that get spent not participating in life because I feel bad and I think if I only have X amount of days left I'm wasting one. That's hard to get past.
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Well said Caryn. The fear is always there, but we are alive! I try to plan something to do everyday. During the week of course it is going to work. But on the weekends I plan things for each day and make myself do them....it might be going to a movie with my DH, hanging out with my BFF's or just working in the yard. I plan for the future!! This gives me something to look forward to. I don't know what my future is.....nobody does (even those without cancer). I try not to live cancer....I try to live life!! You are right Wendy...we could have been run over by a bus...but we weren't. We have an incurable disease, but it is a liveable disease! So let's LIVE!!
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Lauralind5,
Yes, it can be hard to get past, but the more I do, the more I feel like I'm flipping cancer off. As I said, I may not be able to control what it does to my body, but I will not let it control my heart, soul and mind.0 -
On the flip side, my partner and I after renting for a couple of years bought a house and moved July 4 weekend ! If THATS not looking forward Im not sure what is LOL
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Late, as usual, getting back on BCO! Kiwicatmom, it's good to hear from another (former) Michigander. Yes, it's a Lions game! I loved the pictures of your new home. How do you get so lucky to live in NZ?
Okay, back to reading the thread now!
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I married a Michigan man and we lived there for 8 years. We root for ALL the Michigan teams (except Michigan State ha ha). We went to the Wings every New Years. Go LIONS!
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I love sitting down with my tea and catching up on this thread. I love you guys funny that I would say that seeing as I don't really know most of you. The shared journey we are on makes us sisters of a sort at least I feel that way. I'm a bit of a hippy flake though .
Buying houses and getting stuff done and working I feel like I've been dragging my butt abit listening to you guys.
Had a wonderful day yesterday and it was all just my mindset. Let's see if I can pull off another one.
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Flipping cancer the bird love that.
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I'm with you Caryn; I love your attitude! You are my inspiration that life does go on and on. I was knocked back with a dx of stage IV out of the gate, but the way I look at it is that I didn't have to endure tx initially at stage 2 just to have it come back three years later to endure round two. I was blissfully ignorant for many years and now it's all coming in one fell swoop. Looking forward and moving forward day by day. My team has always said "it's a process." Take one step at a time to move forward. So that's how I look at it too, just take one step and do what I must, then take the next so I don't get overwhelmed by it all. Best to you all and thinking of you all always. Hugs.
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I find this thread very comforting. I was dx at 34 less than 3 months ago and am the mother of 4 children 6 and under!! My babies were IVF babies and I fought very hard to get them, just as I will fight very very hard to stay and raise them into the wonderful people they deserve to be! Thank you for creating such a positive thread when there is so much negative out there for stage 4 breast cancer! Alissa
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Welcome Alissa, I am so in awe of you. I have three children that are 17 17 and 20 on one side I always wish they were five and would hug me more but part of me is glad they are older. I don't know I think if you are kept busy especially caring for kids that's a full time job....your mind doesn't sit always on the cancer wagon. Also I find having children gives me lots of resolve to fight this disease.
The beginning is tough I was diagnosed in June lots of tears. But like so many on this thread I make the choice to be happy.
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Thanks Wendy! My daughter is 6, my twin boys turned 4 yesterday!! and my baby is 2! They are so much work and so much fun! I use to wish they would stop growing, now I find myself wishing they were older, not because of the work, but because I know I would be firmly in their minds! The first thing I thought when I got my dx was my baby would not remember his mommy and that broke my heart. I am not always a great wife, friend or sister, but I am an amazing mom!! And my kids deserve that, if any of what I just wrote makes sense. I think with them being so little, I have to be more positive, they can't see mom falling apart all of the time, they dont need that burden at their age. I celebrated my boys birthday yesterday like there was no tomorrow, because they deserve it! But that does not mean that the negative was far from my mind. I think I cling to threads like this, because I need peace, I need hope, or what else do I have anymore??
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Well I will soon be able to give a start date for my chemo.
I am TN like you Texas Rose and Lauralind 5. Thank you to all you beautiful ladies that I have been following on here for over a month. Totally a basket case. but I will truthfully tell you that your stories have given me hope. I have been found with breast cancer metasis to my lungs and chest lymph nodes. I have a 3.5 CM lump plus multiple smaller ones.
I went to Lehigh Valley Medical Center in Allentown. The doctor recommended carboplatin and gezmar. Not sure I have them spelled right. He also told me with these drugs I would not lose my hair. :-) but my oncologist here is saying carboplatin and Taxol, with which I will lose my hair. What to do -- What to do?
I know everyone on here states that everyone gets different side effects. My biggest fears are vomiting and constipation. Sorry if this is tmi.
Anyone taking any of these treatments that have any suggestions for me. Thank you all so very much.
Rosieo
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Rosieo- I am currently on Carbo and Gemzar, although I pretty much just started. I am in the middle of my second cycle and so far I have been tolerating it really well! No nausea or vomiting or anything, just some mild indigestion and a little tired feeling. I had both drugs on Friday and was able to go out all day on Saturday (shopping, dinner, and the movies!) and worked a full day yesterday.
I was on Taxol alone for 9 months and no nasuea there either. Fatigue was a major issue though, especially as time went on. I also had some issues with my nails and the hair thing was certainly not an easy thing to deal with. It has now started to grow back at a rapid pace.
I hope all this helps, but like you said, everybody is different.
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Rosieo - I have been on weekly Taxol since May 22nd of this year. My routine was 3 weeks on and 1 week off, no other drugs. I had no nausea or constipation from it....but I did loose my hair, brows and lashes. As of this past Friday, Sept. 11th, I am NED! I have read many articles that TN's respond to Taxol. My ONC is going to keep me on Taxol going forward since it worked for me, might reduce the dose. She also said would take me off if I suddenly developed a reaction to it or if neuropathy set in.
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Thank You so much Texas Rose & Becs
I am going to read over and over your replys because that is what I have to hear to be able to get myself into that chair. May I ask both of you ladies, have you been diagnosed withs mets and where are the mets. Again, thank you, thank you, thank you
Rosieo
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Wendy 3: I appreciate your "we could have been run over by a bus" comment. It's strange how many times since my diagnosis last month I've found comfort in that statement.
I am new to this board. I was diagnosed last month at 38 after two spinal compression fractures. My mets are significant: skull, spine, ribs, shoulder blades. Breast cancer was not on my radar at all. Life has changed significantly. I quit my all-consuming, high pressure job, which reduced our income 60%. My life now takes place within a two-mile radius. Instead of my high-profile business lunches, it's a big deal to have the energy to go to Target.
I look and feel different. And I don't mean that I'm bald and tired and hobble around. It means that I hug my kids tighter, I say yes more, I laugh louder. I am so much kinder to and more appreciative of my husband. I listen better. I embrace the sight of a butterfly, the sound of the ocean. My life may be shorter, but it will be sweeter.
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We all still have a lot of living left to do. Rather than sitting around "waiting to die", we have chosen to stand up and enjoy life. I choose to believe that I will someday join the NED group and will live for many more years. I expect to have ups and downs, and they might be more serious downs than people without mbc experience, but I hope to thoroughly enjoy the ups. I have many people and things to be thankful for, and I will try to never forget that
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It is amazing how just a scrap of good news will lift me right out of the gloom. Had my first blood test yesterday after my first round of Ibrance/Femera and my WBC was not bad at all so I can continue with round two. My Onc also says just from palpitating that my Lymph nodes and breast tumor have shrunk substantially. So maybe it is working already! Plus, so far I feel pretty fine physically! I needed even that little boost for now. It's funny listening to you Mom's with little ones about how you want to be strong for them and create memories and want them to be old enough to remember you. I feel very fortunate that my kids are 25, 23, 21 but I still feel that way. I try to remain positive and not "scare" them or be a downer. I still want to create more memories with them. It doesn't change much when they are older. I want to be here for every single moment with them! Weddings. grandchildren, heartaches. You never stop needing your Mom. Wendy, I still do a lot of tears and just can't help it. I have always been an emotional person, cry at weddings, during the National Anthem sometimes, when I get really mad ect. So just let it rip and then move on. I always feel better after....
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Bluefrog76 that's exactly it our lives may be shorter but so much the sweeter. I watch people of whom I counted myself wander through theirdays unaware of how wonderful life is. My children are my rocks and I plan on enjoying them for a few years to come😘
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Anybody else missing the like button...?
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