Unfortunately things are going downhill

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  • Southernsurvivor
    Southernsurvivor Member Posts: 632
    edited September 2017

    Lita,

    Lifting you up in prayer tonight and tomorrow. So verysorry you are having to deal with these issues/side effects. So many of us rooting for you!

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  • Lita57
    Lita57 Member Posts: 2,437
    edited September 2017

    I'm not so much worried about the eye issues...it's the dizziness where I literally have to sit down, the pounding, throbbing head, and whooshing in my ears, and I'm SO sleepy, even after a good night's sleep. Ive been off Xeloda for almost 2 wks now, so I don’t think it's X anymore 😣


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  • zarovka
    zarovka Member Posts: 3,607
    edited September 2017

    I've been dealing with being sleepy even after sleeping. My body is out of whack.

    >Z<

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  • Lita57
    Lita57 Member Posts: 2,437
    edited September 2017

    The end is near…

    Dear friends, it is with the utmost sadness that I write this. I went for my brain MRI today, and I received the results a couple of hours later. It's way worse than I could have ever imagined. The dr is amazed that I'm still standing…I have MORE than 20 brain tumors and I also have meningeal activity in the lining of the brain, which is very hard to treat. I have elected not to have "whole brain radiation" because it would turn me into a zombie/vegetable (given the LARGE amount of tumors I have), and I would no longer be me…just a body lying in a bed, waiting to die. I have elected "hospice care" and will be signing up for it on Tuesday, after the holiday. In the meantime, I will try to finish my third novel in the Bullmina Bulldog trilogy. The dr says I have only weeks, maybe a couple of months left. I am losing vision in my left eye, and the headaches and dizziness are considerably worse. I have been given a Rx for steroids to help with some of the pain and brain swelling. If you wish to come and see me b4 I start losing cognitive function, I suggest you do it now. Keep in mind, I am very fatigued and can only handle short visits.

    Blessings to you all, Lita

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  • PattyPeppermint
    PattyPeppermint Member Posts: 11,162
    edited September 2017

    hey lita I responded to you on bone mets thread. Much love

    Kandy. Thinking of you



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  • Kandy
    Kandy Member Posts: 1,461
    edited September 2017

    Lita, I am speechless. I'm so sorry you received such grim news. Try to focus on, no matter what the results are, there is always a plan. Now your plan is to go with hospice, even tho none of us was ready for this to be the plan, please try to find some comfort in it. They will help keep you comfortable which is something we all strive for. We are all stage 4 breast cancer, we are all just a scan away from your situation being ours at some point. We will support you and be there with you spiritually. I think it's most important to get you back to being as comfortable as you can possibly be, so you can enjoy your time again, hopefully hospice will get you there quickly. I'm still lifting you up in prayer, now for comfort and peace. I hope you feel the warmth of our love for you.

    Patty,

    Thanks for checking in. I hope you are doing okay, especially with the boys back in school. I have had a difficult week, back and pelvis has been killing me. I could only sleep about an hour, then I would be up for the night, cat napping on the sofa. I seen MO yesterday, he wasn't happy with the situation at all. He changed pain meds again and put in a request to my RO to do radiation for pain control. I was able to sleep last night, thank goodness, the dilaudid did the trick. Keeping you lifted in prayer.

    To everyone else, thank you all for all the support you give me, y'all are awesome. I'm praying for each of you, may we all say an extra prayer for Lita, my heart breaks for her. It's a constant reminder that we all need to enjoy the moment, it is the only thing guaranteed. Love to all of you.

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  • Kandy
    Kandy Member Posts: 1,461
    edited September 2017

    Lita, I started a new thread of your own, so you will only have to post once. Hope that is helpful. We are all right there with you, supporting you all the way. Prayers for you my friend.

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  • Lita57
    Lita57 Member Posts: 2,437
    edited September 2017

    Kandy, can you send a link?

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  • Kandy
    Kandy Member Posts: 1,461
    edited September 2017

    https://community.breastcancer.org/forum/8/topics/858394?page=1#idx_7

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  • Kandy
    Kandy Member Posts: 1,461
    edited September 2017

    Lita, I'm not sure how to make that link live, maybe someone else can help us. But I have already been ridiculed by starting the thread. I was only trying to make it easier for you. I hope you know I care about you and will pray for you along the way.

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  • Kandy
    Kandy Member Posts: 1,461
    edited September 2017

    Lita, the thread is under your name.

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  • 70charger
    70charger Member Posts: 963
    edited September 2017

    https://community.breastcancer.org/forum/8/topics/858394?page=1#idx_8

    I think it linked for you.

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  • Kandy
    Kandy Member Posts: 1,461
    edited September 2017

    Thank you.

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  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,284
    edited September 2017

    Kandy. Thanks for starting the thread for Lita to make things easier for her. I absolutely could not believe that someone would have a problem with it or make a comment like the one that was made. You are acting out of the kindness of your heart, despite not feeling well yourself to do something nice for one of our sisters. I guess it takes all kinds... I for one thank you!


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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited September 2017

    Kandy, thanks for the Lita thread, 70charger, thanks for the link to it.


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  • 70charger
    70charger Member Posts: 963
    edited September 2017

    Thanks Kandy for starting Litas' link.

    Kandy U R welcome

    DivineMrsM no problem

    I'm so sorry Lita!

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  • bigbhome
    bigbhome Member Posts: 840
    edited September 2017

    Kandy, that special thread for Lita was an incredibly thoughtful, kind thing to do. Some people talk the talk, but can't walk the walk. You definitely walk the walk! I am proud to know you!

    Hugs and prayers

    Claudia

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  • PattyPeppermint
    PattyPeppermint Member Posts: 11,162
    edited September 2017

    Kandy. Glad to hear you got some pain relief and some sleep. Living In daily pain sucks. Hope you had a good day. Big hugs coming your way.


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  • Lita57
    Lita57 Member Posts: 2,437
    edited September 2017

    Kandy, glad you're getting relief.

    I will post MY update on the thread you so lovingly set up.

    Thanks for that

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited September 2017

    That was awesome of you Kandy, thank you! I hope the pain subsides and you can continue to get some most important quality sleep.

    Lita, You are in my thoughts today. My heart hurts so much. Don't count yourself out yet, turnarounds do occur.....

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  • Kjones13
    Kjones13 Member Posts: 1,520
    edited September 2017

    kandy--thinking of you and hoping the pain subsides. Pain will mess with your mental game. Stay strong! Prayers and love

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  • bigbhome
    bigbhome Member Posts: 840
    edited September 2017

    Kandy, I hope you get some good pain relief and a good sleep!

    Claudia

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  • PattyPeppermint
    PattyPeppermint Member Posts: 11,162
    edited September 2017

    Thinking of you Kandy


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  • Kandy
    Kandy Member Posts: 1,461
    edited September 2017

    Good evening ladies, wanted to give y'all and update and to let you know how much I appreciate y'all checking in and caring. I've had a time with my back lately. I seen my RO today, he is going to irradiate thoracic and lumbar/sacral in a couple places. Hopefully that will help a lot. I'm on way too much pain meds, I wonder how I'm still functioning. I will start that in 2 weeks. I'm really hoping that Halaven is working. I am going to be really depressed if I fail another one so quickly. I hope everyone is doing well. Keeping each of you in my prayers.

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  • zarovka
    zarovka Member Posts: 3,607
    edited September 2017

    Thinking of you every day. I am glad you are looking for ways to reduce the pain.

    >Z<

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  • PattyPeppermint
    PattyPeppermint Member Posts: 11,162
    edited September 2017

    Glad to see you posting. Hoping rads help your pain. I to understand the effect of eing on too many pain meds. Hugs


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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited September 2017

    Thinking of you, Kandy, and all that you are going through. When will you know if halavan is working, or when is your next scan

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  • Lita57
    Lita57 Member Posts: 2,437
    edited September 2017

    Oh, Kandy, I know what you're going thru...I had to have rad sessions on my thoracic and lumbar areas multiple times. Bone mets HURT!

    I wish you could get some THC or CBD tincture to help with the unrelenting pain, but I'm not sure it's legal where you are. Opioids did absolutely nothing for me, except "plug" me up, of course, and make me a little drowsy.

    As I may have stated before in another post, a friend said in 10-15 years med marijuana will be an important part of the cancer-fighting arsenal as more and more states legalize it for medical conditions.

    You hang in there, hon, and we pray you'll get some relief soon. We also hope this current Tx helps knock those mets back.

    L


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  • Cure-ious
    Cure-ious Member Posts: 2,626
    edited September 2017

    Kandy, We are all waiting to hear about the Halaven, which you've only been on for about a month? And glad that you are dealing with the pain; is there any other way to assess if it might be working? too soon to feel better..

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  • Kandy
    Kandy Member Posts: 1,461
    edited September 2017

    Thanks ladies, they are going to draw tumor markers next week, mine has always been accurate so I'm hoping that gives us some insight as to what is happening. They will scan at the end of my 3rd cycle. So in about a month.

    Lita, I really agree that CBD will definitely be a part of cancer treatment in the future. It is illegal in my state. That makes me angry that to me is just another controlled drug if they would legalize it. I don't see the difference in that versus the rest of the stuff we take.

    Hoping everyone has a wonderful peaceful day. Praying for each and everyone of you.

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