A place to talk death and dying issues
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gotta get someone to video it so we can see it.0 -
Hi, Blondie and all, I had my 3rd Halaven treatment today and saw the onc. He wants me to have 3 more treatments and then to get a PET, and maybe figure out what's making my left arm/hand so numb and clumsy.
Blondie, you had asked how I was doing emotionally. Now that my husband, and my friends/family and I can talk casually about when I'm not here anymore, and I'm getting things mailed to people I'd like to have them, it's much better. That was a big and painful iceberg to break.
Guess I'd better get to bed.
Nite nite!
xoxoxoxoos
Calico
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Calico - I have some neuropathy in my hands/feet that began with taxol. However, I'm now very diligent with taking L-gutamine & a B Complex & so far it stays fairly "stable" - some days may seem a little more, then it goes back to baseline.
What you're describing I haven't experienced yet; however, I've had years, b4 BC, of back issues. Over the years I've heard of these same symptoms happening to others & most often they end up being a pinched nerve and/or slipped or herniated disk. If it were me, I'd be requesting an MRI with and without contrast of the cervical & thoracic spine - it will show everything. It's possible a bone met could be pressing on a nerve or whatever & that could possibly be radiated or cyber knifed - just some thoughts. I now get a MRI of thewhole spine every 6 months to keep an eye on things as my whole spine has mets & 2 of the vertebra almost 100%! I'm claustrophobic, so I go to the open, wide machine, take a Xanax and where I go has what are called prisim glasses (most places around here don't have them). They give the illusion of being outside of the machine, sort of, puts your vision right to the end of the machine - so far I've done very well with these items in place.
Please keep us posted.
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srtymom - prism glasses sound great! guess they dont have them here. about the closest thing is the mri machine puts headphones on you with your choice of music or you can bring a cd in. the glasses sounds cool.,0 -
Calico- love Mr. Honey lounging on the sacks of mulch! So like a cat. I hope the halaven treatments are tolerable, sorry about the neuropathy. I have neuropathy in my feet from taxol. Have a great day.
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Hi, SyrMom, your MRI idea sounds like the best plan. I had c5-c6-c7 fused in 1997 because of serious spinal cord compression. The surgeon at the time told me the compression was so bad, I easily could have become a quadraplegic.
The MRI from May 2014 shows lots of bulging, osteophytes, etc. at c4-c5, but no spinal cord compression. I'd read years ago that the areas above and below a fusion can start to disintegrate because of added stress on the areas from the fusion. My guess is this is what is happening, although, as you say, it could easily be mets in the cervical spine which I haven't had YET. I have lots of mets in the thoracic spine.
I said to my onc that I couldn't see myself, at this "stage", having another fusion surgery for problems at c4-c5, and he said, "That's not going to happen." I think he figures (hopes?) I'll leave the planet before this becomes a more serious problem.
So . . . . . I think I'll proceed as he wants me to, with a PET in 6 weeks, and decide then whether to press for an MRI. Thanks so much for the info on the neuropathy supplements. I'll give them a try.
I really appreciate all your thoughts and help on this.
xoxoxoxooxoox
Calico
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Hey, Rosevalley, I'd never seen Mr. Honey pay any attention to the Buddha statue before. He's at that very cute "teenager" stage The whole thing struck me as him saying, "Oh, yeah, Buddha and I are buds. We hang out and swap stories on lazy Sunday afternoons."
Mr. Honey was raised in a neighbor's barn and decided he liked us better. When he adopted us, I called the neighbor and told her what was happening. She said he never liked her anyway, and she was fine with him adopting us. Similar stories like this are why we now have 5 cats! They definitely were not "in the plan."
xoxoxoxoxooxxo
Calico
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Calico - I'd bet it has something to do with your previous surgery. Since 1997 was a while ago, it's possible things have changed so much something much less aggressive could help you - worth looking into. I was actually thinking spinal cord compression too, but just forgot to mention. The MRI will pick that up.
I believe the PET picks up mostly "activity," of cancer, however, my understanding is other things can cause activity, such as inflammation.
Good luck.
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Calico- we have had a couple of random adopted animals over the years. As a matter of fact if you go to the warm and fuzzy thread you can see my "fur family" all 6 of them; I posted pictures of the crew yesterday.
I am sorry you are having such difficulties with neuropathy and treatment. Sounds miserable. I am a little surprised that since I am not taking anything to treat my cancer, the aromasin stopped working, that I am not in more pain. My sternum was just a point of misery as were my knees and just above on my thigh. All that pain is gone. The 2 really sore spots on my back ribs are gone. Now it's just achy hips, especially if I put pressure on them (laying on my side) and off and on right upper arm aching. The weird numb sensations on my forehead are gone too. I have some skull mets. This is exactly what happened in 2013, lots of pelvic, sternal & back pain, then it was much much less. Then no bone marrow, which resulted in severe anemia. My options are, xeloda- (what a nightmare I would never last), back to afinitor (no thank you - heart issues, diarrhea, feeling weird, no taste and turned into a water balloon), chemo (never again) and an Ibrance trial got shot down (by both Mayo doc and current onc without any explanation), as did going back to faslodex current oncologist said no to that. So I'm riding off into the sunset with Blondie, since I don't like my options.
I don't know what to think about all these tests. I had a Jan PET/CT scan at Mayos and that was contradicted by a whole body radioactive bone scan by some orthopedic doctors in Feb exactly one month later. So I never can believe anything that comes out of testing - certainly not much of it or very little matches where the pain is. All I know is that it will hurt somewhere and then it will stop. So use your pain meds and ride it out. The cancer eats its fill and moves on. Only this time after it eats all the bone marrow again... I'm going out that way. You just get so anemic you go to sleep.
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What a darling menagerie, Rosevalley! Your Zoe looks so much like our Sinbad, right down to the white bib and heart-shaped tag. They are all precious!
This disease is so insane. It colonizes our bodies greedily to the point of killing us, thereby taking itself down in the process. I can picture it as a character in literature, the ultimate evil and ignorant antagonist, incapable of reasoning.
I'm not far behind you, Rosevalley and Blondie. Sending prayers up for all of us to leave the planet peacefully and anxiety-free.
xoxoxoxoxoxo
Calico
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Too much time has passed since I've posted here. Know that I keep you all in my thoughts and hold hope for as much peace, comfort, joy and beauty in your lives as is possible. mscal02, I hope your party is a wondrous event, full of smiles, laughter, hugs, and good times.
All of our stories are unique, so very personal, yet so much that we share is universal. When I think of my suffering, both existential and physical, I know that I am not alone. When I think of your suffering, I hope you know and feel you are not alone. Lately I've been contemplating suffering versus unnecessary suffering. Who decides what is "unnecessary" suffering? Is my suffering unnecessary when my thoughts about suffering bring me sorrow or anger or regret? Is my suffering unnecessary whenever my medical care does not meet my needs? Do I need to hold myself and others accountable whenever my suffering is unnecessary? Does unnecessary always mean unacceptable? Is it possible that making these distinctions can lead me to a more peaceful place?
You might not know it from the words above, but I've been allowing myself more time to cultivate awareness of beauty and opportunities for joy. I found beauty and joy just this morning as I watched a tiny bird waiting for me at the bird feeder and a very young child running with glee to his school bus, as I listened to music that spoke to my heart, as I tasted fresh blueberries and banana in my morning smoothie, and as I felt a soothing warm shower wash away some of the tension in my body. Am I appreciating beauty and joy more now because of more suffering, even the contemplation of suffering? I think so.
I appreciate reading your posts even when I am unable to contribute. I will do my best to be more responsive!
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Brendatrue, The one thing that I see time and time again is the raw pain and suffering that consume our bodies and minds. I question how much is too much, and have I gone through more pain and suffering to extend my good days or just prolong the bad days. If it truly extends the good, I am okay with that. But if it just adds more pain and suffering to linger on, I think I will pass on that.
I have taken a hard look at the meds I take, and I have started to reduce meds that I feel are not doing much for me, or enough to justify the side effects and cost. So many of the drugs the MO wants me to take have the same side effects and about the same results. So I hope to be on the heart meds only soon. I would ditch those as well but Adriamycin damaged my heart, thanks chemo! Perhaps I am not choosing the right path, but it feels better to be away from the meds, and just go natural. One day this may change, but until then I am going to be as drug free as possible.
I love to take pictures, and I will see the beauty in every flower, the white froth on top of every wave, and find my joy walking in the sand. I have a lot left to do...............
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mscal..hope your party is a wonderful celebration!! I love Parrell's Happy...thankfully my Grandaughter does too...so I can listen to it over & over & over again. Thinking of you blondie, calico, brenda, rose...and trying to wrap my head around the suffering this crap causes....wishing it wasn't so. Love to all.
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RK, always nice to hear from you, wherever you pop up.
Beachbum, my only meds now are warfarin for stroke risk reduction and Ranexa and Nitro for two heart conditions that most likely are at least partly related to cancer treatment. I had to stop hormonal therapy because of TIA's and, oddly enough, have had NED status since my last chemotherapy, which really kicked my butt. My quality of life has been dealt another tough blow with major heart disease, but I still find more joy in life than I do suffering--well, at least most days.
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I dont get scans or mammograms anymore, did get a mri scan to see if it was in my brain n a ct to check things but other than that natta.
I wonder all the time what it feels like to die if this is it, not like tomorrow, but 5 years ago i thought i had 3 years n still here. Why, am i not done with something, what. I know i want 2 make sure the twins who r 21 r on there way. 1 is the other working on it, just
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Calico- Your Sinbad looks like Zoey? Zoe is pretty, but poor Zoe is a wee little train wreck. She has severe flea allergies and we finally got them revolution from the vets and that stuff really works. (It gets rid of ear mites, fleas, ticks and heartworm in one topical dose) Zoe had such tooth decay and abcesses that a year ago we pulled all her teeth. She has none. She also has a very odd shoulder that pops out and she limps. But she is the sweetest most affectionate cat! A real love bug. Mr. Honey looks huge! I hope he's friendly! I nearly always have a cat on my lap in the morning.
Blondie- don't worry about dying. Let it go. You didn't worry about being born- we all just did it. It turned out well. It's like breathing... you just do until you don't. No one gets a practice run, we all wing it by the seat of our pants.
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Poor Zoe!!! Wonderful you were able to get all those nasty things under control with Revolution. Sinbad is 14 and definitely slowing down. Both he and his sister, Sophie, have joined forces against the young upstart, Mr. Honey, who is really the sweetest of them all. Sophie is this tiny thing, and it's really funny to see her put Mr. Honey in his place.
I really believe that all our health care providers will treat us right, and get us to an anxiety and pain free place to leave the planet. The only other thing I ask is to NOT let the crazy person across the street be my home health care nurse! My husband's promised he won't let that happen!
Nite All!
xoxooxxooox
Calico
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Calico-
Calico -Crazy- we had used frontline, got it at Costco and it seemed to stop working. Besides just one flea bite sends Zoey over the edge. Revolution is fantastic, expensive but you can go a month and half and need nothing! No need for heartguard either! Saves $ on the dogs. I love orange tabbys Mr. Honey is beautiful.I hope what you say is true about our medical providers being a resource. We shall see.
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Weird- I accidentally hit the bar and added all these spaces to my post and I tried to edit them out and couldn't. That has never happened before. So I just deleted the whole thing.
Calico- I hope you are right about our medical providers actually being there in the end. I am skeptical. Past history... we will see.
As for the topical flea stuff Revolution, you don't need heartguard for heartworm if you use it. It ends up being a 2/for 1 special and saves $. We also can go a month and 1/2 before reapplying. Stuff is awesome. Last Fall we had the Frontline we were using stop working. Thank goodness there was this new product. I have never seen ticks here, but I know they are an issue back East and in the South.
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Not worried just wondering
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hey Blondie. One day at a time. Talk, rant , question away. We are here to listen. Think ing of you.
Hope everyone else is doing great.
Hugs to all.
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Blondie- I used to worry about dying but I have decided since I can't do anything to prepare for it, don't know how long it will take or whether it will be painful --- I do what I always do in those situations, leave it under the rug. Don't go there. I am sure a shrink would have a field day! haha
I agree with Patty vent and air your fears, then at least you get them out of yourself and they are not festering away inside giving you indigestion and keeping you up at night. Are the fentanyl patches helping you any?
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Yikes this idea is way cool and shows you are in charge of your destiny in one way or another...If you don't mind I think I will copy your idea...Hope your day is Fabulous.
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Not worrying just curious dont like the unknown. I know i am declining can feel it. It is ok, just want to enjoy stuff n the stupid people around me r either in denial or dont get it. 4 them everday is same ole same ole 4 me it isn't it is about making memories 4 me. Not that they saty or don't say anything, it is just, like dd2 is preg due next month 4, has an idiot person she married, n has been yelling at me alot, like every time i talk to her, either I shut up or call her on things. N then it is the not driving g jssue n their lack of being helpful taking me to like walmart or anywhere, i feel like such a burden.
Done
Happy Sunday
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get Blondie. Think ing of you.
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Rant away Blondie! Wish I could just take you. (((((Hugs))))))
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Lol am good
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Blondie, let's be clear here. Many of us feel as if we're a burden. I'm here to say, "No way!!" As the saying goes, I want to live long enough to be a burden to my grandchildren.
I'm much closer to my grandchildren than I am to my first-born - a know-it-all daughter who dragged us through purgatory during her teens and early 20's. Now she's decided that she will grant me one phone call on her way home on Mondays. With traffic roaring in the background, I'm allowed to respond to her 'chat'. Big freakin' deal! I do it to keep family peace and because my dear husband wants me to. I have learned to meander hopelessly while she tries in vain to get me to stay on topic. Ha!!!! My turn to bother her.
Worry no more, my dear girl. Live your life the way you want to. I'm giving you and many others here the option of free will and free speech.
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Sabel -
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Thanks sabel
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