A place to talk death and dying issues
Comments
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karrenne-So sorry for the loss of a precious mama. She is w/God now and in no pain anymore. I agree w/others that it will take some time to be able to not grieve every day , this is normal right now. Remember all the good things she did and said. Her memory will be w/you forever. God Bless.
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Hi, sisters, missed you all and thank you for your support. I've had a mix of getting tests and fun stuff, too, I'm glad to say.
The trip Wednesday to the neurologist and getting the EMG test established that there is something wrong with a nerve root in the neck/upper thoracic area that would account for my left arm/hand weakness and lack of sensation. He said he would call my onc and send him a report. He also suggested a PET, though for some reason my onc has only sent me for CTs the last year or so, and I already had an appointment for a CT on Thursday, which I went to. The neuro also ordered a new brain MRI to see what's happened to the funky spots in my brain in the last 6 - 8 weeks. I'll get the brain MRI in a couple of weeks.
I'll see the onc on Tuesday for the CT results. No good news expected there.
My computer is acting funky so better send this before I lose it.
xoxoxoxoooxoxo
Calico
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Karenne...blessings & peace to you. You will forever have your Mom's journey & passing etched in your heart...but with the knowledge that you loved her & cared for her through her illness...a divine act.
Calico....I'm glad there was confirmation of a nerve problem....I think that knowledge is important because, like you said...maybe there IS something you can do to improve/correct the pain/weakness! As for markers-dang. I will hope and
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Oops...I'll hope & pray that your results w/the "messenger" are not as expected on Tues...and we can celebrate. Hope does spring eternal!
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Hi, RonnieKay and all, my takeaway from the neurologist/EMG appointment is a little complex. The neuro said the most important thing was for the him to talk to the onc and make sure they were on the same page (I agree with that). He also said he couldn't see any obvious compression of the nerve root, and that it could be the cancer growing over the nerve root (oh, joy). He expressed concern about sending me for more tests if there was ultimately nothing that could be done (I appreciate that).
He said cancer can "grow over" the nerves and the brain (like a hand in glove situation - my words, not his.) And he talked a bit about whole brain radiation and injection of chemo into the brain. I was pretty upset by the time I got out of there.
H didn't schedule a follow-up appointment with me, but did refer me for a brain MRI.
We'll just have to see where this trail in Cancerland goes . . . . . . . .
xoxoxoxoxxo!!!
Calico
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Calico, so sorry, it never stops does it.
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Karenne, Your heart sounds full of grief as you mourn the loss of your precious mother. You may not believe this now, but one day you will have many other feelings that fill your heart. I imagine that your mother taught you many things about living your life, and I hope those lessons will guide you in the days, weeks, months, and years to come. Please reach out to others so that they can support you at this very sad time in your life. Think about the possibility of doing one kind thing for yourself or someone else each day as a gift to yourself from your mother and as a gift to your mother's memory from you. Allow the kind acts and good memories to fill your mind and lift your spirits. I hope that you will find peace over time.
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Calico,
And what a trail in Cancerland you are walking. You have been given lots of information to digest and contemplate, and I know the emotional impact must be quite challenging, to say the least. I am glad that the neurologist is willing to talk to your MO, and I hope the two of them are able to agree on what might be most helpful to you in terms of assessment and care. Please know that I keep you in my thoughts and hope for more and more clarity, peace, and relief from discomfort.
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Hi, all, again. Just moi. Saw the onc today and the liver mets are much worse. He offered either a combo of Carboplatin/Gemzar, or to stop treatment. I usually don't take my husband in with me when I talk to the onc, but did today. He and I have talked a lot about my stopping treatment, and he's never discouraged me, just said he'd support anything I wanted to do. So I turned to him and asked him what he thought, and he said he thought I should try the combo . . . . . . . I decided to move forward with the combo, but it was a close call.
I was so calm today, I think because my expectations were that the CT report would be bad, so I didn't have any surprises. I wish I could feel this way all the time.
xoxoxoxoxo!!!
Calico
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Calico,
Tough report to hear, even when calm and prepared. Understand how the treatment decision would be a tough call, too. Hope the combo is manageable side effect wise and gives you a good outcome.
When I'm especially challenged by tough days, I find comfort in the beauty of nature. Here's a photo of a beautiful wildflower, a member of the orchid family that grows in the Blue Ridge Mountains called Lady's Slipper. Thinking of you.
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What a lovely photo to share Brenda! The Blue Ridge Mountains are so beautiful! Lucky you. I was way up in the woods since Monday... just being one with the forest. Old growth and sunbeams are medicine for me. We have a cabin bordering huge state forests...wilderness areas full of absolutely nothing but critters and trees! I sits and I watch, and I walk and I am quiet - reverence for the sheer splendor of it all. I like to draw and sketch things I see too... meditation with a pen and colored pencils.
Calico may you have some luck with this new treatment and may it be easy on you. Strength and fortitude on this path. Hugs and love your way.
Hugs and love to all of you in fact!
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Calico, just ssking, what did u want to do?
Am here 4 u no matter what.
Great pix
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A flower for all of you
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Thanks, Brendatrue, beautiful flowers. Look like woodland fairies.
And thank you, Tomboy, for the beautiful rose. Wonderful gifts from both you and Brendatrue!
And, Rosevalley, so happy you have an escape in the woods, and so grateful for your support!
Hey, Blondie!!! I guess I'd like to hang around on the planet as long as the suffering isn't to the point where I have no quality of life. If I feel too badly on this course of treatment, I will stop it. It had gotten that way on Abraxane and Doxil. Just too miserable to keep going. What's up on your trip????
xoxooxxoxxoxoxo
Calico
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Calico...Can I just say...I love your DH??? That combo's worked for others (Denny123 is my hero..the very day of my mets dx, logged on here & read her topic-10 years living w/liver mets!!! She's one that had that combo). It may not be a walk in the park (how's that for a bad analogy)...but it may save your life...and I say go for it! Sounds like the neurologist has a wise heart....that helps when you get news that you may or may not have expected. I didn't know about C wrapping around nerves...if so, doesn't it seem like it should show up on one of the scans??? When will you start? Prayers that qol is good (I really prefer great!) & C is kicked to the curb!!!!
Rose...DH's family has land in the mountains out the Boring area. Wondering where you're getting your alone w/nature time. It sounds spectacular. Grandaughter & I spent a couple hours at the park this am...birding & squirreling. The pix posted are amazing! Maybe some day I'll get to the Blue Mts, Brenda...very different from the Cascades, I'm sure (I watch HGTV!!!).
Take care....XOXOXO
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Calico, gemzar is a relatively easy chemo, but the first two were hard, flu like symptoms with fever. I have been on it over a year. I do xeloda and gemzar. I am not sure about carbo? I hope they are kind to you
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CalicoCat- Bless you, your a strong lady I can tell. Sending lots of hugs and best of wishes your way.
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Calico...do what is right 4 u...gemsar i was on 4 like 8 months n xeloda for about the same. qol is so important to me. Hang in there
Just waiting, list done..hospice is getting in touch w hospice there.
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Blondie: Wish you a nice trip to Florida!
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Blondie- wishing you a really good Fl trip. Hugs
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Bon voyage, Blondie.
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Me too! Blondie I hope your trip is super fun, full of memories and lovely times with your family. Sand in your toes, sun on your back and love all around.
It's hard to look at that photo of Jill49 sent by her DH and think she passed a week later. I will miss her posts. Love what her DH said about her, nice tribute. I do tend to look at these posts wistfully since they ditched their suffering and got out of cancerland. Not a normal view point I know but it does sound so nice.. free from it all.
My cat is bumping my hand and making it very hard to type! I will try and find some pictures of the forest around the cabin it's so lovely. I can't hike anymore. I used to hike for hours around the trails... you would like the pictures I think.
Be well as you are able.
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Thanks....
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Blondie! You must be very excited thinking about your big trip. I wish you safe travels, adventures of only the best kind, and memory making that will warm your heart and the hearts of those who share this special journey with you.
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Ditto on wishing you a wonderful Florida trip, Blondie!
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Thank u lady, yep really getting excited, ol
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When I saw all the e-mails in my inbox from bc.org, I thought something good's up with Blondie's trip! YAY BLONDIE!!!!!
RonnieKay and Tina, thank you so much for your encouraging words about Gemzar/Carboplatin and liver mets. I don't know squat about either drug. The nurses gave me basic write-ups about them, but you know those things only tell you so much. I will watch out for the flu-ish feeling/fevers. I get my first combo treatment tomorrow. The nurse said I wouldn't need somebody to drive me home afterward, so I'm taking myself. Always a little leery about that with the first treatment of anything.
Maybe CTs aren't sensitive enough to pick out a cancer-infested nerve root, RonnieKay? I don't know. Maybe a PET would be better for that.
Rosevalley, would love to see some pictures of your woods!
xoxoxoxo!!!
Calico
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Ladies, It has been months since I've posted and loved reading about some of you and your trips or plans for travel. I'm not there yet. Here is my good news. After the last two years of nothing working Doxil, Xeloda, can't remember the other one, and my markers going sky high and so many new tumors and growth of others, the end looked near. So one night around the end of April I went on the National Institute of Health's trials for breast cancer, there were so many and almost all of them I had health and blood markers that made me ineligible but there were four that i qualified for. So I printed them out and took them to my Onc and said I'd like to live at least through 2015, so how about we try one of these trials. She agreed that the one that was Cytoxan and Eribulin in combination could be a good fit for I had taken Cytoxan twice before and it did give me more time. I guess they have been given separately but not together. Well besides the nausea which I had and such nerve problems how much worse could things get, and if it worked it would give me another year of life. I'm crying saying that I'm blessed, not only has it worked but all my nerve pain and dead foot syndrome are gone. My cancer markers are the lowest they have been since 2009, and since starting this treatment in May no new tumors and 50% of the ones in my body and bones had no new growth. I did get sick a few weeks back and had two weeks with no chemo (can't remember when the last time that happened maybe 2010), it was heaven, I had no vomitting, I slept better and quality of life was so much better. It made me think and notice, really notice how much chemo wipes me out. But I will keep pushing forward for my children. When the time comes that this treatment no longer works, I'll see if I'm able to find another trlal My Onc has said there is very little left for me to try, and she is thankful that this trial has been such a positive one for me. So as long as my lungs and heart can take it I'm pushing forward. Someone asked about PET Scans and not having so many but CT Scans. With my trial insurance will allow as many CT Scans as the doctor want which is once a month, I always had two PET Scans a year but to be able to monitor they do CT Scans and only if needed then do a PET Scan, for only that reason companies will pay for many of CT's but not PET. My doctor never told me about trials or even that she was participating in some. It took me saying I want to try something and not go out not knowing I did my best to stay as long as I could for my children. Doctors never offered me a trial. It took my own time and research and then bringing them in and asking why am I not on one of these, and what would it take to get on one of these trials. I research the criteria so she couldn't say I didn't meet such for these were the only ones which I had. So I'm wondering how many of you ladies could benefit from a trial and has any of your doctors even advise you on such? This study was already in it's 2nd phase and I just met the deadline for such, but with such positive outcomes this combination must be able to help other Stage IV Breast Cancer patients who want more time with family and friends and soon be put into use other than just a trial. The second week with just a Eribulin push is harder on me and I'm much more weak and more vomitting but after two days that no longer is and issue. I just wanted to share my news and to maybe offer another avenue of hope for my sisters at the end of the line for chemo with Stage iV Breast Cancer. So even though I'm not posting much these days I think of you all and wish only happiness and peace, and I toast you ladies lying on the beach somewhere, enjoy those days.
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Soooooooooo happy for you, M360, and thank you for sharing this wonderful news with us!!! Did you have to travel for the trial?
Seeing doors to continue opening for you and for all of us.
xoxoooooo
Calico
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