My Husband, My Life, My Love, My Family, My Cancer
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I'm not officially in stage 4, but I know (it's a certainty) that I'll get there, so what's the difference? I also see around me that life is the same for others, while I am no longer the same. Someone could tell me that I still have some time to enjoy (I do not think I'm going to die tomorrow) but I can not enjoy things like before, I'm detaching myself from my loved ones and it's not a form of denial, it's simply trying to make the pain less profound. The worst is uncertainty: when will it be? HOW will it be? I do not want to be a burden to my loved ones. I'm sorry, today is not a good day.
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Yndorian,
I just had several of those bad days in a row...so understandable...
Something I learned years ago...to help pull myself up and out of the pit...if you had your very closest friend going through this...what would you think and say to her?
Then think and say those things to yourself.
No guarantees that this will work for you, or anyone...but I find it very powerful...to help me separate from the negative thoughts and emotions swirling in my head.
Gumdoctor
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Gumdoctor~I don't have Facebook, never have. But I admire. You stepping up and finding some beauty and things each day to cling to. Things that as you have said, overlooked. Each day even if just by sheer cluelessness. Now I see a flower and every burst of color and shape. The smell is a really strong feeling and the essence for it has changed. The smell of my DH's cologne. The love is palpable. I think you're wonderful. I admire you.
Giddy up~I try everyday to tellHim exactly how wonderful he is to me. How much I value the blue in his perfect eyes. The laughter that sounds like. Music to me as I learn every shape of his face. Every contour to etch into my memory. To assure I'll never forget a piece of him. He is the one. There will never be another. In life and death. Love is the most powerful of anything. It is why I fight, why I smile. Why I drag myself out of bed each. Morning. To hug my son, to hear my DD laugh and see her crisp blue eyes. To see my DSS go into college. When I was worried I wouldn't. I live for love. Plain and simple.
Yndorian~ my sweet beautiful friend. You're not a burden. But I understand totally. My phrase is hole in the bucket. The water pours out everyday. There is my sweet DH with the hose forever filling and keeping me alive. He always assured me. He loves me and will fight along with me until my last possible be grudging breath. You're amazing and you didn't ask for this either. Just be your amazing wonderful self and life every day one day at a time. It's what I have learned. Love you sweet friends
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Gum Doctor, Micmel, thank you for your words, but especially thanks for reading. I can not share these feelings with anyone else. The fact that you simply understand me is already comforting. I am also saddened by the fact that you understand me because you also suffer. It should not be like that for anyone.
Mic: my husband abandoned me one month before my diagnosis, and I think I was lucky because I can not imagine the pain of living in this process with a loving husband at my side.
Thank you two for being there.
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Yndorian~I was estranged from the majority of my family for let's say 16 years almost straight. I've suffered a lot of ways and I believe suffering is part of life. Unfortunately. I heard in a song today. “ everything we love, will surely someday die" my mouth dropped open and I teared up immediately. Like how shitty is that? You're a strong amazing woman. Because without my DH I don't think I could even take another chemo pill. I force these pills down my throat. Every month I stare at the bottle. “Do I really have to take this?, what would happen if i just stopped and didn't tell anyone"? More suffering clearly. So I realize either way I'm in for some messed up unknown shit coming my way. All I can do is battle. What Choice do I have. I'm sorry I understand as well, but because you're so beautiful and deserve to have a wonderful life. Because beauty is NOT just outside. Not even close and you clearly have both... hang on to us! I am always always here.
Gracie. I love you friend.
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waving to Grannax~ hello sweetheart! How is the family? Hugs hugs!
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Gum Doctor~ I’m really sorry to read that you felt that way about the side effects. My heart hurts for you because I get tired of mine also. I’m afraid of xeloda because of what you just spoke of. It’s not enough to just have already taken another toxin for god knows how long to be like, “oh okay sure, load me up, even though I’m going. To be in agony, oh that’s right if I don’t take this, either way I face agony” outstanding choices here!!! We’re given. So with in my deepest soul I understand and I hate it for us both.. for us all. I truly truly do. Get it! God do I ever. The horrible chemo I’ve been through is enough to bring down a building. And there I am in the middle of the rubble. That is how you felt at that moment, when those side effects had done you in. You needed to let it blow!!!!! I am glad your dose was adjusted. Geeze what we go through!! 🥵🥵0 -
Giddyup,
I can’t agree more. Mel is more than enough. She created this blog, and it’s hard to say how many people she has touched. But I’m one of them. I have a DH that had been in denial since I was diagnosed. He is a great guy in so many ways, but does not understand how sick I feel some days and that I cannot do the things we used to do. I try to, but then I pay for it later. Many times I feel closer to this wonderful group than I do him. It’s not his fault. He just refuses to think I’m not going to be around one day. And I wonder if he gets tired of hearing “not today, Hon”.
Mel, you can only do what you can do, but I challenge you to think of ways or things you CAN do that would bless your DH. Doesn’t have to be anything big. Just something you can both enjoy together.
Thank you for being you. You’ve truly touched my heart, and I am forever indebted to you for starting this blog.
Your Friend in FL,
Booboo
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I'm just trying to get through the next 24 hours as I wait for PET results. Tomorrow at 4ish, you all know the drill. Ugh💞
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Grannax~Waiting with you. It’s maddening that we have to even deal with it at all. I took an nap and now I feel like total crap. Head feels achey, base of my spine feels crappy. Hips have sickness/ache in them. Stomach feels nauseous. Little dizzy. Supposed to start chemo round #34 tonight. Good grief. Find me strength please. I’m with you dear friend...
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Grannax,
Totally got you! It is complete torture to wait for results. I am going to have a nice, long talk with my onc about this. They have kept me waiting for weeks at a time (because she is out of the office), and I’m not sure she understands what it’s like for us.
Prayers heading your way for great results. We are waiting with you!
You are surrounded by the love of your MBC friends
Booboo
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Grannax, wish you good luck and good news tomorrow !
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grannax, we’re waiting with you ..... 💖 In you pocket with what I’ve got on hand 🍷 🍫 😋
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Grannax- Waiting with you. Will be watching this thread for your results.
I have my CT on Wednesday.
I am sooo tired of being tired. I slept well last night. I went to church this morning. Came home and sat down after lunch with a good book. Next thing I knew I was asleep. Sister came over and I woke up to her at the door. Groggy. Now 7pm and ready for bed but I want to stay up till 9pm to watch a show. Ugh. My sister asked why I am so tired. I told her it is the meds we take to survive. Micmel- Yes the toxins we subject ourselves to but what choice do we have.
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Grannax - I will be there with you too.
At 11 am tomorrow, I will have to take a break though...
I am having bloodwork and my first follow-up since meeting Madame X. She came on way too strong for my taste...did not make a very good first impression...giving her a 2nd chance at a lower dose...so far she is behaving better than the first time...
Gumdoctor
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BooBoo~That is so very sweet to read something like that. I consider this thread our home. If it was just me, I would be an idiot for just talking to myself. I would do it , because I find it helpful. But I adore my virtual family and thank you for being here as well. I try so hard to be support and caring because we are the only people who truly get the daily struggles. You're a precious person and friend yourself !
Mae~How are you feeling.? I hope you kicked that cold to the curb! Good to see you !
Candy~I guess we do what we have to do. What choice do we have. Tonight I had my two closest girlfriends over, my best friend and then my second closest friend from school. It was a blast! We had sobo noodles and some other stuff delicious honestly. We watched the mick. Laughed our asses off. It's moments like those I live for. Hugs sweet friend. In your pocket Wednesday for sure. 💛🌸
Waving to Grannax and Yndorian! Hugs ladies
Hope Philly is ok!
Gum doctor~ madame better behave for you I hope. Reduction in doseage has to be the answer! I'll be hoping for you!
Hi Tanya!!! Rosie!! Bella... muddling..Lynnwood.. Chicagoan.... Divine...sweet Parry... loving you Gracie! Blueshine....BooBoo...Bigbhome.been a while
Now! 😢. Runor. hope you're ok. My Chelle Janetmara...Minnie...Marianelizabeth...
Elleonwheels....Roseabella~JFL...JKL..MJh... pots...Stillivin...GP....Holly...Joe...Jo.....Giddyup...Daniel & Leslie....jensgotthis..Sandibeaches...bcincolorado..pip.......Lynne(50's)....Donna.. I am sure as I start to fall asleep others will come to my mind. I’ll remember for the morning. Sleep well ladies. 💞💞💞💞💞💞💞
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Thanks, I need all the help I can get. I'll be ok in 8 hours, once I have a plan, I'm all good and ready to tackle it. Even if it's bad news and time to lose my hair for the fourth time. Although I sure hope not. It's just the waiting and wondering and feeling so out of control. I don't have to explain to any of you. 💞
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Grannax~ I am hugging you tightly. Much love sweet friend..
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Grannax - I will be thinking of you and will be with you in spirit all day...in your pocket as many like to say here
Gumdoctor
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Grannax all the drugs and nothing for scanxiety? I’ll be waiting for the results with you. We should get special magic pills for waiting.
Shots appt and bloodwork tomorrow, zometa infusion the works.
Anyone heard from Gracie? Skitzblitz?
Booboo my husband is sensitive and caring but he still doesn’t “know” like my MBC ladies. Partly my fault bc I don’t always want to be a cancer patient in his eyes.
Yndorian you have a lot of life in front of you at stage ll and it may not come back. If you read about all of this now it can prepare you but it’s not happening to you don’t stress go ahead and live.
Gum doctor I’m glad they’re changing lady x dosage for you. Sounds awful and I know you’re a tough soldier warrior too
Micmel my vacations and traveling are just like staying home. Still tired in pain sick etc. I had to pull over twice in the way driving back from Orlando with my 3 grandkids. The 11 year old offered to drive. No I said as I hung my head out the car door barfing grandmas fine. Oh well the difference is throw up in the toilet or on the side of I-4.
Tanya
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Hello and good morning ladies. I have not heard from skitz... I hope she's okay. I worry also when I don't see the names around as well. I just hope it's living.
I last spoke to Gracie a little over two weeks ago. She was immediately entering hospice and she did say her liver was in failure. She told me she was at peace with it and was almost sounding as if she had completely accepted it. She will be with her DH, finally again. Her love of her life. That will make her happy. I text her everyday. It's still connected I can tell, but no longer says delivered. I'm assuming her son may have possession of it now. Just praying she's comfortable. Once the phone goes green I'll know. 💔 I'm praying her son would let me know. It's breaking my heart terribly. I hope for an answer everyday.
Tanya. You go girl. Throwing up on the side do the road. Amazing. I'd be crying and in a ball in the back seat. I already had car sick as a child. I wouldn't put it past my own body to have had cancer since I was a child and no one even knew about it, I was always sick. The same exact thing actually. Colds chest issues. Ovarian problems, cysts. Several times. I just wasn't healthy. I realize that. Now. So if you can do that. I'm amazed. Me I'd prefer the toilet. You're something else woman!
Pocket jumping for ladies results. Worried for Parry also... keep waiting for the doggie avatar to pop up ! 💔😔.
Hugs to you all beautiful ladies. Grannax Also!
Hello Mae! 🌸🌸💞! BooBoo. 🥰🌹
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Hi all! Still here and read almost daily. Have had some struggles with Xeloda and don’t want to bring anyone down, slowly getting better. Also dealing with my 82 year old mother who is in the beginning of dementia, still in the diagnosis process and will be seeing a specialist in August. Called for appointment in May and first available appointment in August... unbelievable!! She forgets that I’m sick and is demanding which is a challenge, if she forgot I’m sick I don’t want to remind her.
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Lynnwood: Sorry about your mother. I understand very well your situation, my mother also has dementia in a quite early stage, she forgot all her loving memories with me of the last 20 years or more. It is a challenge every day. I am waiting to finish my active treatment to return to take care of her properly, now I'm recovering of my surgery and then following rads. My mother is now in the care of my father who is alcoholic so that you can understand the predicament in which I am. My mother knows about my surgery but does not understand my illness, and I also want to leave it that way. I SEND YOU HUGS
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hello my beautiful friends,
I am here - had a very busy work week, followed by a little pool party yesterday and now I am resting. Going to get a pedicure and a massage today. I threw my back out last week and haven't been able to be very active since.
I am here with you Mae and Grannax as you await your results, wine and chocolate sound like the perfect combo!! I might even add a Valium into the mix if I needed it. The worst!!!
Yndorian beautiful soul! I love what gumdoctor wrote about that you are not a burden. I think that is at the root of our mental suffering so much is the feeling of being a burden to our loved ones. I am right there with you, I suffer from guilt of feeling like I am being a mooch, of taking my parents retirement plans away from them - they did not plan for a sick daughter in her early 40s to have to support
I worry about a lot of things!!! I like GumDr's advice of thinking about how we would feel if it were our best friend going through this. There are amazing humans out there that are able to bear our struggles with us...the sadness and grief of this journey doesn't need to be all our own to contain. I am so glad you found this site too. We do all understand. I think I have been perhaps struggling with this same thing with my best friend. But it comes out as me feeling like I can't handle her anymore. But I love her!!! Maybe that's my subconscious pulling away???Lynnewood - sorry to hear you've had some rough times. I hope the clouds are clearing for you and you are feeling better. Really really hard to see your mom less functioning cognitively.
hugs my friend.Hugs and love to everyone Micmel and Candy and Tanya and BooBoo and anyone I am missing cause my brain is mushy.
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So .... more news I did not expect....
Liver functions tests high ... immed discontinue X ...
Scan tomorrow ...
UGH
Gumdoctor
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Gumdoctor: Sorry to hear that bad news. I hope your MO can find the better tx to you. Milkthistle standardizased extract makes wonders for liver. I wish you the best with your scan tomorrow. HUGS
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Gumdoctor,
We are with you as you tackle this unsettling time. Having to switch meds is kind of traumatic. You never know whether you are going to feel better or worse. No one in my family understands why I keep my hair short. I know the day is coming when I'll lose it again, so why grow it long?
My prayers are going to be specific....that the next one is easy to tolerate so you can continue to live for more adventures! You are a strong woman, and please know that no matter what, God has got you!
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Gumdoctor-- So sorry to hear your news. I am praying for you. How long were you on X? Do they think the med is causing the elevated enzymes or that it is ineffective? I don't know that much about X.
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Gum Doctor~Liver liver liver..... I don’t know what kind of tumor load you’re dealing with within the liver, but I found an aggressive doctor that was willing to go in and cut out my tumor and destroy anything looking strange. The liver is an amazing organ. Y90? Discussed? And ablation? Seek a good Radiology specialist and see if they can laser some. I am in your pocket quietly supporting you. As you find the tx that will cooperate with you and that liver!!!
I have already told my family , I will not loose my hair again, so when I read that 4th time hair loss, it triggered the two times mine was lost as well. Cancer suck complete ass. I wish I could feel more than just helpless when this happens. I wish there was a way we could really be there in person for each other... love to you all
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I believe every chemo someway has The ability to elevate our liver enzymes. It also depends on how Long you have been on it. I was just thinking the same thing candy!
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