A place to talk death and dying issues
Comments
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Hey, I'm more than half-way to Tuesday's oncologist appointment and I've managed to keep to my inner peace, while gently exploring what I want to bring to our appointment.
Of course, I want clearance on the lumpy bump on my skull, so the osteopath can work away the pain...but how I present it to the oncologist will determine her reaction.
If I rush in panicked, she'll reassure me.
If I'm firm about follow-up, I'm sure she'll refer me to imaging tests, a radiation oncologist or UCSF.
If I say, "hey, what's the worst that can happen? I'll have more cancer, go on hospice and die", we'll both laugh because that's exactly where I already am.
Our usual approach with is to plan for eventualities. What if things "get bad"? What pain relief options do I have? What about steroids again, ugh? Is there any "right action" in this field of "don't know mind"?
Maybe she'll give me a pass, so the osteopath can touch me. Or we'll just work around this obstacle too.
Sometimes I feel like one of those little old ladies who gradually closes down her big house and goes to live on a cot in her kitchen, where it's warm, dry and not too far from food and water. Just keeping to the basics of living smaller and smaller.
But this morning I looked out my bedroom window to see a red-shoulder hawk sweep onto the top of a nearby walnut tree - watched it watch and preen and see and swoop away again. Then came a hummingbird to rest twig-top and I felt, I am part of all of this too. I needn't even leave my bed to breathe in the whole world, the universe. They say we came from stars and to stars we shall return.
I am in the chrysalis phase and hope to emerge with wings to fly too, but until then I patiently wait.
Friends, thank you for reading and listening. It's a good feeling to have your companionship!
Wishing everyone a happy May Day, whether ye be pagans, workers of the world uniting or happy celebrants of the mid-season turning.
warm love, Stephanie
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I had a very enlightening experience just recently. I found out that a friend of mine - we home-schooled our kids together many years ago, but hadn't been close recently - was in Hospice not expected to live long.
I spoke to her on the phone, and went to visit her. She had, 2 weeks previously, suddenly felt very ill, and went to the ER. She was diagnosed quickly with uterine cancer spread to bowel, etc, etc. She was given only a few days. She went home and spent 2 days sorting out will, trusts, house, car etc, then felt she could relax and get on with it. She went straight into hospice, She also had family issues to sort out - brought her ex-husband and their children together and demanded they reconcile and bond. Thankfully they did, and she died a few days later. In all, she had nearly 3 weeks from DX to death.
We had an amazing conversation about death, as only those who are both facing it can have. I envied her for her quick end, and she envied me for my long time frame. I felt that she did not have to linger, with the constant testing, changing meds, and side effects, and she felt I had more time to be with my family and to prepare for the end. In the end we decided that "It is what it is".
We were both very impressed with her care in Hospice, and it reassured me that this was the place where I would end my journey.
I visited her again on the day before she died. She was pretty "out of it" but in no pain - evidently on some pretty powerful meds. She did wake up a few times and acknowledge my presence, and seemed quite at peace, even happy, in those few lucid moments. She died peacefully, surrounded by her newly reconciled children.
My main observations, overall, were that Hospice is awesome, hers was a "good" death, and that I am no longer afraid of what I am facing. I also woke up to the fact that my time is not yet, and I am more at peace with waiting it out.
As she said, "It is what it is" and there's no point in worrying about it. I like that.
I hope this helps those facing this horrible fate - mine feels a little less horrible because of this amazing woman.
From Sue0 -
beautiful story sue
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Sue thank you for sharing your story of your friend. It was beautiful and perfect. It sounded like she was a wise woman who picked the topics most helpful..kids, ex reconciliation and home issues. Hospice sounded terrific. I am glad the experience soothed her soul and yours. A good death is a lovely thing for those experiencing it and those left behind, a blessing. It was good you got to spend time together. Hugs for your loss.
Stephanie I hope your appointment goes well today. Do you have a driver? Blessings to Bonnie, Hope, Nancy, M360 and all those struggling on hospice and endstage cancer. Lovingkindness to all.
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Hello sisters,
Juli-what a wonderful journey you had to DW with your family! It reminded me of my own in 2013, shortly after diagnosis. Memories of Love blessed our family with park passes and it was wonderful trip for my three kids and us.
Stephanie-as promised I'm updating after my three scan results & Onc meeting yesterday. I am viewing it as mostly positive results. My brain/skull MRI was clear, (YEAH!) and my CT showed less pleural effusion and two of three liver lesions gone. (YEAH!) My bone scan showed my ribs and right hip are becoming sclerotic but I did have a fairly large new area of disease on my left posterior hip. I have been referred to Rad Onc in June to shrink that. I had good results last year with radiation, so I expect good results this go around.
Sadly, the Liposomal Doxirubicin has stopped working, as indicated by my Tumor Markers. After radiation, I will change chemo and do a combination of chemo pills and infusion. I forgot the name of it. The best part is, I had final Doxi infusion yesterday and I have 7 weeks off while I do rads, before I have to do new chemo! 7 weeks off after nearly three years of continual therapy is like the best gift ever! Which truly means my trip will be good. He increased my Fentanyl dosing and gave me Maxalt for migraines which worked well last night. Unfortunately, he said no to me sky diving on my trip or coming back and riding on my husband's Harleyt. He is worried about hip fractures and we have no Onc Ortho Surgeons in AK. I guess I will take his advice.
Sue-thank you for sharing what you and your friend learned. I struggle with wanting to be here with my family and wanting to end the monotony of pain, feeling sick, tests, and treatment. Yesterday, the Onc reassured me that I still have other chemo's in my tool box and that he expected the use of Targeted Immune therapy on breast cancer to open up this year. It makes me wonder, will my generation see a cure also? Can I hold out for a cure? What if I got to start living my old life (being a nurse, and active mother & wife) again? I would do it in a minute. So, I try to stay present and enjoy every moment.
Much love to you all, and peace as we travel this road together.
Shelle
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Juli- your Grandson and trip to Disney sounded wonderful. He's a special kid to know his Grandma can run in his dreams and that's enough. It's amazing what kids glean from our experiences with cancer.
Shelley- I would stay off the harley! Good luck with the hip mets radiation and the new chemo. I failed Doxil too. Right after I failed herceptin my markers doubled on doxil. I have Ibrance after faslodex fails. I hope you are more comfortable and the break to do rads is a good one. Alaska is so beautiful.
Staphanie I look forward to what your oncologist told you today. I hope things went well and you got some answers about your lumpy bump. I see mine tomorrow. I will post after. Love to you all.
rosevalley
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Stephanie,
Waiting with warm positive thoughts to hear how your doctor visit went. I imagine you are exhausted and probably processing the knowledge you received. Please know that you are being held in a warm gentle cyber embrace!
I had a friend stop by today who I haven't seen in years. She didn't know about my diagnosis but took one look at me and said what's wrong. I actually thought I was looking pretty good today!! She was upset I hadn't called her. Don't know about you guys but I have isolated myself except for my family and closest friends.....you know...the kind your house can be a mess & they won't notice etc. I knew once word got out when I moved up to stage 4 that the wagons would circle. I absolutely didn't want that. I am happier with fewer people around but that is just me. Anyway, my friend stayed a few hours which annoyed me. The strange thing was I realized my depression/pain levels weren't so bad! Gotta figure that one out but I'm beginning to think that maybe I should expand my inner circle a bit.
My son is getting married in the end of June. We love his fiancée and her family. I bought a dress in a size I thought I would be able to fill out but it is hanging on me. Think I will wait to the last minute for alterations to be on the safe side. I am very excited about this wedding. He is my baby (30 yrs old) so now all my kids will be happily married. His dating life at times made me wonder if I would live long enough to be able to celebrate this milestone. Something about having all our children in happy relationships is very comforting to me. Cancer really sucks but I have found a perk. Because they know I am sick I've gotten out of all the stressful, tedious helping!! They've included me all along with the planning which is nice but beyond that I just want to have a great time!
I hope everyone is having a pain free day and basking in the positive rather that which we cannot control. Gentle hugs, Julie
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Hi Juli,
Came to post my personal update and wanted you to know I so identify with your reaction to your friend! I gave a laugh of recognition!
While everyone "knows the information" that I have advanced breast cancer and am on hospice, I still find myself monitoring others' physical/emotional reactions to my appearance. Oh, I think, "I must look bad". Or, if they are too cheery, I think, "what do they really see?" Or, "so my cheeks have color today."
Mostly, their reactions are about them and their needs that I be okay, especially if they see me infrequently.
Fortunately, I feel well cared for by my hospice team and inner circle of carers, so I'm not looking to them for support.
But, if your friend visited for hours, it sounds like maybe not sensitive to your needs? How can you "set boundaries"?
I find myself just falling asleep now. Or saying, "thanks for coming, I need to sleep" or "can't focus a moment longer."
I've long since stopped serving food and drinks, instead suggest that they bring a snack for themselves, bag lunch, drinks and/or get something to drink from my kitchen.
Anyway, it's hard to handle well-wishers sometimes and if you know lots of people who care, but aren't skilled at caring for others, it can be a challenge to help them learn what I/you/we want for ourselves.
I truly feel that the platinum rule is better than the golden rule at the end-of-life - "do unto others as they would have you do unto them."
Some people like to be pampered and cuddled, others become famous, still others retreat into a smaller community or even go off to the desert to die on their own.
It's our party and we can do it however works best for us.
Blessings and be well, Juli, Stephanie
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I ended up having a wonderful day yesterday - three doctor (oncologist, hospice and osteopath) visits in a row, each interspersed with a nap. Whew!
Everyone concurs - the new lumpy bumps are part of the disease process, but aren't likely to be the death of me. My liver continues to slowly swell and fail - causing me to sleep more and lose focus. It's likely I'll just sleep more and more and eventually go to sleep and not wake up.
I can't tell you how relieved this makes me!
Seriously, the three things I don't want to die of are the lung mets (suffocate), the belly mets (nausea and vomiting, ugh!) and brain mets (sorry, seen too many close friends die of this). I'm not dissing anyone else's disease process or ticket out of life, just stating my personal preference based on years in a failing body while observing others' deaths.
I can continue to have gentle body work to help with pain and was encouraged, again, to experiment with increasing pain meds and using medical marijuana (I'm carrying the California MM card, in spite of hating being stoned.)
Just five weeks from now, DWD will be legally available in CA. While I still don't imagine going that route myself, it's good to think that if I develop any of those three dreaded routes out, I can slip out sooner than later.
And, I love that everyone concurred! I almost don't care what doctors agree upon, even if it sounds like bad news for me, just having them agree is a huge relief. Anyone who sees multiple doctors or engages integrative or CAM (complementary and alternative medicine) has experienced the mind-f.ck of disagreeing doctors. It's hugely stressful and I'm feeling grateful.
Also, grateful that the notion of an imaging test for my head/neck was taken off the table. I really don't want to know whether I have brain mets until/unless I exhibit symptoms. Have never had my head checked by imaging test and good for me to die in ignorance. It is bliss in this instance.
And no blood tests mean no worry about tumor markers, liver function, anemia, protein and albumin levels now. Relieves my mind!
I am feeling so blessed to be facing the death I wish; to have the necessary supports, including hospice and personal care teams; to have such good friends; to be in this beautiful, nurturing place and to feel divine love pouring through and surrounding me. It's another precious period in my life and I'm so very, very grateful!
Thank you too dear friends, I know you understand and I can speak fully and openly here.
What a gift!
well wishing, Stephanie
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Good morning, dear Rosevalley,
I'm up early for Zofran and soon will drain.
I know you understand!
And want you to know I'm thinking of you with gratitude and love. I wouldn't be draining daily, but for misunderstanding something you wrote back when.
So happy that the Faslodex is working for you now. And that you can add Ibrance, should things progress again. Hurray, tolerable treatment options!
Rosevalley, I just get a puppy wiggle when I think of you at the shore and in a garden. Who would have guessed this at the New Year 2016?
May you continue to enjoy many moments of wonder with your beloved family.
Thank you for your well wishes and support, Stephanie
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Stephanie, I'm keeping you in my thoughts and prayers and sending cyber love to you as you go through this chapter of your story. Thank you for sharing what you can, when you can. Much love and peace. Shelle
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Stephanie, I'm glad that your doctors agree. Even more glad that no one wanted to do anything "invasive", even though imaging isn't invasive. Seems like they know you well and respect your views.
I hope you and Rose and everyone else are having a great day.
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Glad to hear your doctors have a general consensus as to your journey Stephanie. The key words here are "your journey". I want all my specialists to have no doubt what my wishes are and to respect them. Sounds like an easy request but we all know it isn't. So far I've been mostly lucky. When I wasn't I walked away without regret. For me a lot can be learned from how a doctor or nurse reacts to a hug. I am a hugger by nature.....don't really care who it is....if I want a relationship of any kind I hug it!!!! I've learned through the years how coldness, judgment or even superiority can be felt. I don't make these decisions lightly because hugging is an art some people have never experienced or learned. Openness can also be felt which is high on my priority list as well as respect. I'll never put all the puzzle pieces together during my time of learning but I enjoy the process.
My state does not have a DWD law and that really bothers me. My plan is to die naturally but I would also like to have options. I keep doing research but my memory is so bad I feel I go in circles. I have some family that lives in CA so perhaps I will research residency requirements. It just seems so mean that the government can have such a strong say during a difficult and painful time in a person's life. I don't have the energy to become politically active trying to change things at this stage of my life.
Rosevalley, did you get your new meds? If so, have you noticed a difference yet...I know they take time. I do hope you've found sunshine in your skies. I've had a lot of rainy days lately. The ONC wanted to add another drug (on Lexapro now). I declined saying I will, and have, made an appointment with my trusted doc who has been treating me for years and knows my hugging 😉! I don't want to just add something for the sake of adding it hoping it will help. I've had years of success with regular doc so I will trust what he explains and advises.
Wishing you all warmth, hugs, freedom from pain both physical and mental,and serenity. Julie
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Kindness and gratitude to all who share respectfully,
Rosevalley for the suggestion of the book After the Ecstasy the Laundry by Jack Kornfield, your openness about your struggles and strategies as well as desire to snatch life wherever you can find it;
[Hope you don't mind my offering a reframe I've often used: treatments fail us, we don't fail our treatments.]
Stephanie for the "Listen Listen Listen to My Heart's Song," sympathetic joy, drawing that line in the sand then moving it again and again (my words, not yours), being present for unfolding moments and change, healing desert waters, the platinum rule, your gratitude for concurrence and all the blessings of your life;
Shelley for your comments about control and family as well as a beautiful family photo;
Bestbird for your generosity of spirit;
Jharris for making memories, the comfort and joy to be found in nature, acceptance, finding authentic ways of being with others in our orbit; hugging and openness, autonomy and the right to make choices about one's own end;
Cb123 for the rose and kind words;
Blondie for your openness about your struggles and yearning for independence;
Pajim for your comments on the process of continually adapting to our limitations as they expand evermore into our lives;
Lulubee for "minding your happiness";
ASDmom for openness about suffering and reaching out for connection;
Xavo for your detailed share of the Japanese novel about the man, his shadow…and so much more;
Suems for the story of your friend's "good death" and the peace that you have found.
And a poem for you all as well as all who visit without posting, including one particular lurker who sends me such caring and thoughtful PMs:
Poem of the One World
This morning
the beautiful white heron
was floating along above the water
and then into the sky of this
the one world
we all belong to
where everything
sooner or later
is a part of everything else
which thought made me feel
for a little while
quite beautiful myself.
(Mary Oliver)
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I love Mary Oliver poems. Thank you for sharing. Brenda you didn't say how you are? Things ok? Stephanie and I are rather brutally open. Sometimes I think it makes folks uncomfortable but I feel painting a clear "real' picture of what struggles and trials we really face is more truthful. Suffering should be told like it is, raw.
Just like the depression so many of our meds can cause. Why paint it any other way but real. It's so common. And Julie I think the zoloft is taking the edge off. I feel a little better. I also found a counselor that I will see. I have noticed that there are many of us reaching out to treat their depression and pain from life in cancerland. Hugs and sunshine can cure so much.
Stephanie I totally get why you wouldn't want to know the test results so don't do them. Peace in not knowing. I am glad your pain is controlled and you seem pretty comfortable. Sleepy and tired is to be expected. I am sure after so many appointments you will be tired. Nap well.
I love all the stories and sharing experiences. Thank you one and all for the effort to reach out and communicate. Hugs to all.
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This bco topic thread has been languishing as a new one has been infused with attention - Completely Scary Topic: How Do We Die?
https://community.breastcancer.org/forum/8/topics/...
Yet, I consider this my "home room", a place I can share my slow dying experiences fully without fear of frightening others.
Brenda, I loved your post. I love you. And I love how you see each participant and draw us together. Your ability to weave community is a remarkable skill. Thank you!
Rosevalley, you've been pretty quiet at bco lately...or maybe our paths haven't crossed so often recently. Please know that I heard your calling from your depression and that I care. The song I Am Calling You keeps playing in my mind...https://www.youtube.com/watch?v=mj2qFjBKxmI I am so grateful for you and our connection over these months. We with implanted belly drains are a rare breed.
My own update is pretty smooth, uneventful. I continue to waste away except for the swollen belly. Fortunately, I am able to eat and drink thanks to anti-nausea meds, ginger, homeopathic remedy nux vomica and acupressure/Jin Shin Jyutsu. And to delicious food prepared and shared by a chef friend.
Last night I woke up to pee and my foot dragged and balance was off. It wasn't vertigo, foot cramps, a sleepy foot or nerve thing. I could lift my leg/thigh, but not my foot. So my neighbor, my hospice liaison, came and called hospice. The on-call nurse asked a bunch of questions to determine it wasn't a stroke. Hurray! All I wanted then was to go back to sleep. Seem fine this morning. A hospice nurse is coming later today for my weekly visit and that's enough human help, thank you!
Again, I felt the angels' reassurance that all is well and not to worry. What a relief!
How are others doing? Julie? Shelley? Blondie? Anyone else on hospice and/or facing end-of-life now?
And greetings to all who read and remember us. This is a completely scary topic, but it now feels as normal to me as the foggy dawn silence.
Sending all the best in love and kindness, Stephanie
This poem you might want to watch and hear,
David Whyte Recites "The Journey"
http://www.youtube.com/watch?v=s8q6WJ52oDc
The Journey, a poem by David Whyte
Above the mountains
the geese turn into
the light again
Painting their
black silhouettes
on an open sky.
Sometimes everything
has to be
inscribed across
the heavens
so you can find
the one line
already written
inside you.
Sometimes it takes
a great sky
to find that
first, bright
and indescribable
wedge of freedom
in your own heart.
Sometimes with
the bones of the black
sticks left when the fire
has gone out
someone has written
something new
in the ashes of your life.
You are not leaving.
Even as the light fades quickly now,
you are arriving.
from 'House of Belonging' by David Whyte
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Dear Stephanie Hi! It has been busy here and my attention has been split between my dog who has not been acting normally. 200 spent on labs yesterday as she refused to eat. She has also lost weight so I am worried. She is only 11 and I love her dearly. Every time I have an animal that refuses to eat or loses weight they have either cancer or renal failure. Then my youngest is having mental health issues and I am worried bout that. Her suffering becomes "our" suffering. I was supposed to go to an appointment for her this morning but woke up feeling queasy and full. My DH will take her. I drained off 1000cc with my pleurx. Which is a lot for me these days. I have been trying to go every 3rd day but maybe I should go back to every other day. Anyway the draining triggered nausea and I vomited several times a fair amount of liquid. That depressed me since I have not vomited in weeks. Since I have a history of N/V and intestinal blockage my anxiety over this is HIGH. My markers only dropped a little and worry about the faslodex stopping its magic. Here I was in my PCP's office yesterday telling her things were pretty good, no N/V and we agreed to up the zoloft. It is helping the depression but not enough. Anyway back to feeling queasy and not so hot. It is such a roller coaster this life in cancerland.
I feel badly telling you my woes as you have so much on your plate. I am glad you can walk to the bathroom and sorry about your foot feeling odd and not cooperating. Is it any better this morning? Dying and wasting is hard work and you are doing it with grace. I am glad your team is supporting you with food, accupressure and hospice visits. Thank you for the poem and for checking in as you are able.
There hasn't been any word from Blondie either. I know Nancy was back in the hospital getting support and Hope is home with hospice. I think of you all and try to hold you in the light. Sending prayers for the ease of suffering and lovingkindess to ease the way.
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here counting
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here checking in i mean.0 -
Checking in as well. Hasn't been the greatest week or so. See ONC tomorrow to decide where we are. I am normally a very positive person even in negative circumstances. Years ago I suffered from anxiety/depression but it has been a non-issue with Lexapro. I knew my mind was not operating well beginning almost a month ago but it progressed to the point where I called my regular doc in tears. He explained that brain chemistry changes due to all the treatments/meds I have and continue to have. I wasn't sleeping well which was the star that broke the camels back. To make a long sob story shorter, he decided to add Wellbutrin to the mix. Just having him explain everything to me in terms I understood made a world of difference.
He also challenged the fact that I do not take enough pain medication. Background - I am a 32 year recovering sober alcoholic. I have learned to be very careful, through the years, with any mood altering substances. Yet, there is a time and a place for everything. At this point in my life....it is not the time to endure any more pain than I absolutely have to. Pain makes everything else look bleaker. This is very difficult for me to wrap my head around. I guess I need to do some acceptance meditation. Anyone else struggle with the pain med thing?
I did get my teeth cleaned and it feels great! I think You mentioned this Stephanie? In talking to the dentist, we decided to do cleaning whenever I feel it will make me happy. No more X-rays. He will no longer do any repair work unless it is my choic which I can only see happening if I have severe pain. Luckily my teeth and gums looked good.
I walked once around our house this weekend. What a joy to see all the budding plants! My DH is going to put some colorful flowers outside "my special window" next weekend. The turkeys must be in mating season as the toms are showing off with their tail feathers spread. Beautiful! It is still chilly here but the air is crisp and clean. I love Spring!
I am actually hopeful for an improving week even with chemo. I can handle my body failing as long as I have serenity and can see the joy that surrounding me when I open my eyes!
Gentle hugs to pain free wishes to all. Keep those poems coming - love them. Julie
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Julie, I take Zoloft and Welbutrin. Zoloft takes the edge off my anger and Welbutrin helps my mood. It took over 30 years to find a combo that works this well. I don't apologize for it, my brain needs it - it's a chemical imbalance, not something I have to "get over". I have to say, I added Magnesium to my daily pills and it has made a huge difference! Apparently we are all Magnesium deprived and sure enough I feel way more balanced than before, even with the prescribed meds. I think that's why I'm handling my new Stage IV so well. I won't stop the other meds, though, as it's this balance that is so effective. I don't remember when the Magnesium started to work, it was just like one day I thought, "huh, normally I'd be a hot mess right now..."
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Hi Blondie thank you for checking in!! I hope when you are done with PT you can move in with your daughter. Hugs and love to you.
Jharis- cool about the wild turkeys. They are such huge birds. We saw one a couple of weekends ago and marveled at his size and attitude sauntering across the road! It's great to have wildlife out the window. I agree that we should take relief where we can find it! Zoloft is helping me and it looks like from others posts they are also helped by antidepressants. Take the help where it is available! Glad you are finding relief and taking pain meds when you need them makes sense. Being in pain is miserable. I have a chronic area in my back that gives me misery.. I take meds for relief. It helps.
Hi Barb and Stephanie! I am feeling better today and was able to eat no N/V this morning. My pup is eating some of her food. Life is looking up. Love to all. rosevalley
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Hi Julie,
While I'm inexperienced with depression and anti-depressants, I too am seeking to make friends with pain medications or at least to accept them.
For very different reasons, I've avoided pain medications. I don't like the feeling of being stoned or high (won't even read thrillers or watch TV). Anything artificial that numbs me out is suspect.
That said, I've come to relate to my body as a child in need. If a hurting child were sitting on my lap crying over a boo-boo, I would soothe and comfort the child. If their pain were severe, I might seek a doctor to prescribe the very medications (morphine, Lyrica and tramadol) that I'm currently taking. I would seek to ease the child's pain.
And, because I am not a child, but a woman near the end-of-life, I'd recognize that I am neither schooling myself to avoid all pain nor to become addicted to comfort at all costs.
My mind and body are infinitely interwoven now and when my body is in pain, my mind can suffer. And my mind can't control or dismiss all pains (though a good book, beauty, friendship or an interesting puzzle can temporarily relieve painful feelings).
Learning to accept pain medications is tough. I've recently moved from dosing when in need to taking the morphine on a regular schedule, whether or not my head thinks I need it. I needn't run up to a 6, 7 or 8 on the pain scale to then try to get it under control. Wrong plan!
Better to be steady at a lower dose than need a higher dose that makes me dopey.
I may be an expert in pain, having experienced much because of my genetic disorder, breast cancer and medical treatments for both, but I am a novice at pain medications. It's interesting to learn something new and change my ways, even at this late age.
Will be interested to learn what others have to say.
Here's a bit of beauty to share.
Loving kindness for all, Stephanie
I think I shall never see a poem as lovely as thee, my sweet Nigella, love-in-the-mist.
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Hi Juli (sorry I misspelled your name last night - spellcheck, ugh),
The greatest help with pain meds has come from my palliative care doctor (since 2011) who is now my hospice doctor.
I've ongoing hand and arm nerve pain from radiation to brachial plexus that we tried different pain meds for, first neurontin, then lyrica. I'm happy to get the help to sleep at night without feeling the "hit your funny bone" sensation.
Then in 2015 came tramadol for liver pain (mets found there in early 2014). Liver mets cause pain when the liver swells and/or the capsule is affected - that's where the nerves are.
Later in 2015, when I got onto hospice, I started the morphine for liver pain. As I mentioned, for the longest time I've taken the smallest possible amount as infrequently as possible.
I've since changed to a regular schedule - every four hours, whether I think I need it or not and more frequently for break through pain. I'm pretty sure that I've not become addicted - I don't crave more, get high or suffer bodily withdrawal when I don't take it.
Instead my liver shouts loud!
Since it's grown quite large, it has a loud voice that I must listen to.
Juli and others, if you are having pain, other symptoms from your cancer or treatment side effects, I hope you'll seek palliative care in addition to care from an oncologist. https://getpalliativecare.org
My oncologist of nearly 24 years loves me to bits, but we couldn't get my symptoms under control.
Palliative care/hospice doctors are experts at prescribing, dosing, adjusting meds. And quite expert at overcoming patient resistance to taking them. The hospice nurses have been incredibly supportive too.
And palliative care helped me decide to do two procedures that help with the fluid that my cancer produces - for my lung a VATS pleuradesis procedure in 2012 and for my belly ascites an implanted drain. I wouldn't have thought of them on my own. Would likely have kept going for outpatient draining of fluid with a big needle, risk of infection, trips to hospital and extreme discomfort between draining sessions.
Also, I've always engaged a wide variety of holistic, integrative, complementary and alternative practices. I describe my overall approach here https://community.breastcancer.org/forum/79/topics... and am happy to share specifics that have aided me, if you're interested.
Hope this is helpful to all who need more specialized, personalized care to improve daily quality-of-life.
healing blessings, Stephanie
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Stephanie- the Nigela flower with the lady bug is beautiful. What a photo, love it. You amaze me that you offer so much information to those in need when you struggle yourself. I hope you are comfortable today.
I started counseling and have gone to 2 sessions. She asked me what I wanted to focus on and I said transitions (life to death)and kids/husband. I am dying slowly at 57 and there is no way out of this early departure. My life is small in focus from having been sick and daily issues are draining, occasional nausea and vomiting, back pain and depression from it all and the meds. There is nothing anyone can do to allieviate or "fix" these problems... just bandaid the symptoms. I see no reason to talk about what I can not do anything about except suck it up and accept it. We talked about DWD meds and when I tank again how I want to take them. Not having the kids present etc. Other then that I want to work on strategies to help my kids accept my death and move on. It's a weird "treatment plan" since it's focus will be on my leaving and the void it will fill on the kids and my DH. There is no "improvement" to be had- just acceptance and healing into death - which is a big step don't get me wrong. Having a good "daily quality of life" is my goal for the time being. It's nice to be able to talk to someone about dying as my DH and kids don't "go there." That's when BCO and threads like this help a lot. Permission to explore death and dying with others.
Extra blessings to Nancy as she transitions from this life to the next. Extra hugs to her family. Light and love to those on hospice Blondie, Hope and Stephanie and all those I don't know and who need healing energies.
Edited- Just got off the phone and my tumor marker from last week jumped up to 870. I knew something was up with the increased ascites fluid being taken off and the episode of N/V. So my reprieve on Faslodex was pretty short 3 months... got a call into oncologist to add Ibrance. Sigh.. I need to make it to September when school starts. Cancer sucks.
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Hi Steph and lovely sisters. Hortense was my friend from her cold caps page, which also saved my hair during chemo in 2013. Has anyone heard from her? Very worried. Hugs to all.
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I know that I have to take pain meds BEFORE I hit an 8 or 9. Once the pain gets that high, it's hard to get on top of it. So taking a lower does regularly is more effective. Also, when I take too much pain meds, I don't get stoned, I get nauseous. I don't feel stoned ever on my meds and I'm all the way up to Fentanyl patches. I've gotten myself off morphine 3 times...as when the pain eases I don't need it any more. The doctors swore I'd have to be hospitalized each time but I didn't. Had to use Lorazepam for restless leg syndrome while my body got used to no morphine. Then I'd have to start building up again as the pain increased.
You may find the Toredol better for liver pain as it is also an inflammatory. I have to use mixed meds to get the proper balance so I can continue to function. I am most certainly not worried about addiction as this is all at my life end and not beginning or middle. The narcotics I take would kill anyone else, but my body needs them and I don't apologize for them.
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Hi Barbe,
Thank you for your reassuring and useful advice!
I really appreciate learning from others and will ask my hospice nurse about Toredol.
This is how much of a control freak I am - if I can't control the pain with a variety of non-pharmaceutical interventions, I want to believe it can be controlled with those medications. Somehow, I see my actions as a causative factor...not the cancer, not the pain, but my limitations in what I can do with or without drugs.
It's hard to explain, but I know it would be better to accept that pain comes with a hugely swollen liver. Oh, to forgive the limits of self and medications that prevent me from always living well with the effects of advanced cancer.
Getting knocked down so often, I've developed inner muscles for getting back up. But sometimes I'm just tired and defeated. Sometimes it's time to lie down and let go of my desired results.
This is actually a good morning, now that the nausea is under control. The hiccuping has subsided and I continue to be grateful I don't vomit.
Sending healing kindness and love for all, Stephanie
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Good morning, dear Rosevalley,
Am sending sweet loving kindness on this gentle spring morning.
After yesterday's winds, the foggy calm is quietly refreshing.
Please see your personal thread for more personal messages.
So much love and light, Stephanie
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This joke crossed my path and I thought you too might enjoy a chuckle:
A distraught patient phoned her doctor's office.
"Is it true," she wanted to know, "that the medication you prescribed has to be taken for the rest of my life?"
"'Yes, I'm afraid so,"' the doctor told her.
There was a moment of silence before the she replied,
"I'm wondering, then, just how serious is my condition because this prescription is marked 'NO REFILLS'.."
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