A place to talk death and dying issues
Comments
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Sky - yes you are amazing! I don't really know what to say other than it breaks my heart. Sending you and your daughters lots of love and hugs, and comfort and treats of all kinds.
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sky--I am also without words...except to say, I'm sorry. Love the eat cake for breakfast! Sending good thoughts your way for peace
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Sky, thanks for your honesty and thoughts as you go down this path. Words somehow seem inadequate, finding the right words to say escapes me. But we are here for you in spirit and thinking of you
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Sky, I am very sorry to learn the results of the tests. Very much saddened by the news. Just in case, spinal fluid mets in fact could be treated with direct chemo into the duma . If it's possible to avoid the immobility by treating the mets in the spinal fluid, probably it is worth consideration. Moving into a daughter's place might be a good idea. Hope you feel alright today. You are in my warmest thoughts for you.
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Sky, you are in my thoughts and prayers. I am sorry to hear about your recent dx. I admire the strength you have shown and continue to show. I am sure your daughters who wrap their arms around you, physically and emotionally.
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Sky, unsettling news that you have been given...struck by your inner wisdom regarding your body, your life path, your insistence on being heard...sad that you have reached this place in your life...hopeful that you will find peace of mind, heart, body...and that your dear family will find peace as well.
Calico, Rosevalley, Hortense, Blondie...keeping you in my thoughts as well. Blondie, your legacy involves so much more than the fact that you are dying of breast cancer; the whole story of you carries far more meaning.
To all of my other friends who visit this thread, we share a meaningful experience by being present for and supportive of each other. I don't take you for granted.
When I am struggling and have those nights of unease, I like to remember this poem, which I hope brings some measure of comfort.
THE PEACE OF WILD THINGS (Wendell Berry)
When despair grows in me
and I wake in the middle of the night at the least sound
in fear of what my life and my children's lives may be,
I go and lie down where the wood drake
rests in his beauty on the water, and the great heron feeds.
I come into the peace of wild things
who do not tax their lives with forethought
of grief. I come into the presence of still water.
And I feel above me the day-blind stars
waiting for their light. For a time
I rest in the grace of the world, and am free.
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Brenda-
love the poem! Lovingkindness to all.0 -
My heart was happy when I saw Rosevalley back...we need your words. Then I read your words, Sky, and now can barely see to type. Please feel our arms around you...keep us close when you LOL, when you share your life stories. We are gathered with you on the floor, camping out. We are eating cake with you. It was Star who had filing to do...and she's lighting the Sky for all of us. You are loved, dear Sister, and I thank you for teaching us to be heard...that we know out bodies, and deserve to be honored. My heart breaks too...that you've had to gather all these thoughts, that you have to prepare your precious daughters to carry on without you, but they have your spirit & are learning to value life at an early age...and will continue the compassionate way of life you've taught. Love & peace & I will wait for your posts.
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Skylotus,
My prayers are with you and your family. I'm new to brain mets as of last month and having to rethink everything. I had a 2cm pituitary tumor removed in Aug & taking supplemental medication to replace the pituitary.
Terri
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((((Sky)))) I wish there was something I could say to make things better. But I know that you feel the love and support for you here, and I hope that it brings you some measure of peace. May the days ahead be filled with love and togetherness for you and your sweet daughters.
I wish the same for all of the wonderful ladies on this thread. I follow you all, and send you my love...
Rose.
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sky. I'm in awe. You have a plan and it sounds like fun. You set a wonderful example to your daughters and us. Eat more cake!
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Brenda,
Thank you for sharing the poem. It will be at my bedside for those nights
Nel
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Sky, I'm so sorry to read this news. It does indeed suck. Really sucks. This is a major adjustment, but that "swashbucklin goddess warrior princess" is still you. Cake for breakfast!!!
Hugs to you and your daughters. If you don't want to move in with them don't feel you have to. You might feel better surrounded by your stuff.
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Sky, well that just sucks,i hate when they give u a time period. I hope u fgure out which is best for u to live. U are amazing, brave, strong and so many other adjectives.
Virtual hugs with u r daughters n u...ageed will lay at the foot of your bed, b in u r pockets, read t u if u want, i am virtually there
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All I can do is send hugs .... When people tell me I am brave I say no, not brave, just doing what I have to do. What choice do we have? So much is out of our control. Sky, you are an amazing woman and you make me see that there are things we can control .... Love your determination to spend as much time laughing out loud with your daughters. And yes, the cake part, too!
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oh my gosh lovely ladies! Thank you for all your kind words and thoughts! The poem was beautiful and thank you for reminding me it was Star that wrote about filing left to do....
I posted three new blogs last nite to wp. I couldn't sleep anyhow.
My oldest daughter and my three grandchildren are here camping out tonight. It's what we decided to do. They're going to "tag team" me. Obviously, it's going to be one day at a time, one step at a time, one moment at a time. But, we've decided we'll do what we can to make this work, so I can be in my humble abode for the remainder of my time.
I spoke with the radiation oncologist today and decided against any further radiation treatments. And I'm ok with that. The benefit isn't enough for me to subject myself to the futility. Because I am not HER+, chemo to the spinal fluid is not an option.
I'll follow up with my oncologist in 2 weeks. Hospice comes on Tuesday, to meet with my daughters and I. My friends are willing to step up as well with the "camping out" portion. I think I'll write for as long as I can, and like Star, contemplate that filing still left to do.
This feels so very surreal right now. I was not expecting this. I really thought I was going to be facing compression fractures. My daughter asked me numerous times if I researched treatment after the diagnosis of leptomeningeal metastases, I had not. Soooo unlike me. That's how far removed I was from this diagnosis as a possibility I would have to be dealing with. And, here it is, exactly what I'm facing....
Thank you again for your kind words and thoughts.....
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Sky, I did a little research for you. Here is what I found for now:
Treatment goals of leptomeningeal carcinomatosis (LC) include improvement or stabilization of the patient's neurologic status, prolongation of survival, and palliation. Some clinicians are hesitant to even treat LC, given the short duration of survival and risk of neurotoxicity, but a high index of suspicion and prompt treatment can prevent serious and irreversible neurologic damage. The lack of large randomized controlled trials has made the correct choice of treatment controversial. Most patients require a combination of surgery, radiation, and chemotherapy.
- Decide the intensity of treatment based on the presence of a systemic cancer that is responsive to treatment and preexisting neurologic damage and relatively preserved functionality.
- Treat the systemic cancer, as the patient is likely to die from that.
- Treat the entire neuraxis, as tumor cells are disseminated widely by CSF flow. The standard therapies are (1) radiation therapy to symptomatic sites and regions where imaging has demonstrated bulk disease and (2) intrathecal chemotherapy.
- Radiation palliates local symptoms, relieves CSF flow obstruction, and treats areas such as nerve-root sleeves, Virchow-Robin spaces, and the interior of bulky lesions that chemotherapy does not reach. Even without evidence of bulky disease, patients may benefit from radiation. Radiation therapy typically consists of 2400 rads given in 8 doses over 10-14 days. Radiation is directed to the site of major clinical involvement and planned so that myelosuppression is acceptable and does not compromise efforts to eliminate malignant cells from the CSF. Dosages can range from 20 Gy in 1 week to 30 Gy over 3-4 weeks. The dosage for lymphomatous and leukemic meningitis is usually 30 Gy given over 10 doses.
- Intrathecal chemotherapy treats subclinical leptomeningeal deposits and tumor cells floating in the CSF, preventing further seeding.[2]
- Three agents are routinely given; methotrexate (MTX), cytarabine (Ara-C), and thiotepa.
- Cytararabine is the first-choice agent (in its liposomal form only); it is not effective for solid tumors but is useful in leukemic and lymphomatous meningitis. It is now available in liposome-encapsulated form (DepoCyt) that can be administered every 2 weeks rather than 2-3 times a week and results in a longer time to disease progression and higher quality of life than therapy with MTX.
- Thiotepa, the second-line agent after MTX and cytarabine, is cleared from CSF within minutes and has survival curves similar to those of MTX with less neurologic toxicity than MTX.
- The superiority of combination intrathecal therapies over single agents is controversial. Six randomized trials have shown no difference between single-agent methotrexate and combined therapy, and combination treatments may be more neurotoxic than single agents.
- For patients who respond well to treatment, start treatment with radiation to bulky tumors and symptomatic sites, and place a ventricular catheter if possible. Scan CSF flow, and follow this with intrathecal chemotherapy if CSF flow is not obstructed. Also, optimally manage any systemic cancers.
- For patients with a fair response to treatment, local radiation therapy and intrathecal chemotherapy delivered by means of LP may be appropriate.
- For patients who are classified as poor risk, offer radiation therapy to symptomatic sites or supportive measures only (eg, analgesics, anticonvulsants, and steroids). Treatment is difficult and primarily palliative, and results are generally poor because of the presence of many metastases.
- A number of other therapies are under development.
- Mafosfamide is a form of cyclophosphamide that is active intrathecally and has little neurotoxicity aside from headaches, but only phase II trials have been conducted.
- Rituximab has been given intrathecally and is also in Phase II trials (LC from lymphoma only).[8]
- Trastuzumab has been given intrathecally to treat LC from breast cancer.[9]
- Diaziquone is effective in hematologic tumors. Adverse effects include headaches and immunosuppression. It can be given at a dosage of 2 mg twice weekly.
- Temozolomide, in combination with Ara-C, has completed Phase I/II trials.
- Another drug, 4-hydroperoxycyclophosphamide (4-HC) is in phase I trials and is apparently effective in treating medulloblastoma.
- Topotecan, a topoisomerase I inhibitor, has completed phase II trials.
- A drug available for high-dose systemic administration, 6-mercaptopurine (6-MP), has shown efficacy in some patients.
- There are case reports of LC from non—small cell lung cancer (NSCLC) or breast cancer responding to intrathecal gemcitabine, trastuzumab, letrozole, and tamoxifen.
- One patient with LC from prostate cancer responded to hormonal manipulation.
- Intrathecal busulfan, currently in phase I trials, may be active against cyclophosphamide-resistant neoplasms and other tumors.
- Another drug, 3-(4-amino-2-methyl-5-pyrimidinyl) methyl-1-(2-chloroethyl)-1-nitrosourea hydrochloride (ACNU) is modestly effective in animal studies; however, it is neurotoxic and not yet available for use in humans.
- Immunotoxins, such as monoclonal antibodies coupled with a protein toxin or radioisotope, seem effective and are being studied.
- Gene therapy based on the herpes simplex virus thymidine kinase gene combined with ganciclovir is under study but not yet available.
- Supportive care: Offer analgesia with opioids, anticonvulsants for seizures, antidepressants, and anxiolytics to all patients as needed. Treat attention problems and somnolence from whole-brain radiation with psychostimulants or modafinil. (from http://emedicine.medscape.com/article)
Sky, I hope you are comfortable and have very good each and every moment at a time. You are in my thoughts. Have a peaceful Saturday!
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Xavo, thank you so much for the legwork!
My oncologist says there is nothing more to do...in my instance. I spoke with the radiation oncologist and he says any further radiation therapy would be palliative only. I've since decided not to pursue any further treatment. I'm done.
I know that what lies ahead may not be pleasant, as far as seizures and things like that, but I really am at peace with this decision. My fight against breast cancer began in August of 1998. 17 years later I'm still here, albeit nearing the end now. In my small world, that's 17 years more than some women I've come to know ever got. As I told my daughters, for that I am grateful. I got to meet my five beautiful grandchildren, and while I won't live long enough to see their lives blossom to adulthood, I'll have lived long enough to know everyone is going to be ok, and that I've impacted their lives in a positive way.
It's difficult to make the shift from fighting, fighting, fighting....to simply...not fighting anymore. Cancer can be a full-time job. My job now is to go out in peace. And I am. At peace. The girls and I have decided we are going to do all we can to keep me at home, in my own home, until the end. They're going to "tag-team" me, and we'll do the best that we can, with friends chipping in where they can.
We had our first "camp out" last night, kind of like a trial run I suppose. I was my Dad's caregiver 12 years ago (both my parents passed young) after my Mom passed, so my daughters will have the benefit of what I've already experienced and Hospice too.
I remember when I very first posted here at BCO, I was so scared and frightened. I thought I was going to lose my house and my life all in one fell swoop. Two years later, I get to try to live out the remainder of my life in this little house that means so much (it's where my Dad passed). I've not had an easy life (single Mom, worked hard), but I've had a life where I knew what really mattered, filled with love for my children, and forever and always grateful for those moments that really count, tossed in amongst all the hurdles. And that's what I intend to focus on in the now, one day at a time....
Thanks for listening, 😊 and letting me hijack the quotes thread! 😉
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SKY , I'm sorry But there is a lady here then LM Three years ago , Its name mandymoo , Participated in this topic (Sorry for the mistakes English is not my native language ) https://community.breastcancer.org/forum/8/topic/832779?page=1#post_4435972
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Saw this article in my Sunday paper this morning and thought you guys might find i interesting about dying at home
http://www.northjersey.com/opinion/opinion-guest-writers/why-can-t-we-die-at-home-1.1413975
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Sky - loved seeing your post - seems like you did an amazing job bringing up two wonderful daughters and now you have them and five grands to be with you in this part of your journey. Wishing you peace and many fun "sleep overs". Hugs, S.
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Sky, I admire you. I wish I could be as calm, peaceful, and graceful as you when my time comes. You have a beautiful and fruitful life. It should contribute to your calm acceptance of your sunset. Someone, a great Renaissance Man, said that death is easier to accept after a fruitful life, just like after a fruitful working day and then go to sleep. Have a good Sunday!
Carlico, Rosevalley, Hortens, and Blondie, you are all in my thoughts. Wish you all the best.
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Thanks sky r s still here for you
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Thank you again lovely ladies! ☺️ For your lovely words...
Monax, thank you too. I clicked on the link, I do not think I would've found it without your help. I've added it to my favorites, so now three (I've removed all the other "met spots" favorite threads to focus on only these three) that I'll be doing more research on. I see my oncologist on the 30th for a follow-up, and I'll be loaded with questions because of the sharing done by the wonderful women here.
Am I throwing in the towel too soon? Am I giving up too easily? I don't know. I guess I'll find out as time goes on. Sometimes I do wish I had a crystal ball......But, I am a fighter and it doesn't take much to get that fighting spirit riled up again. At the same time, I am tired, and I have grown weaker and I am ok with whatever will be....whatever that will be. ☺️
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Sky, It's good to read the set up your daughters have put in place. You can be in your things and do what you want to do. You are lucky to have such caring daugthers, as they are to have such a wonderful mother. I hope to have your wisdom when my time comes.
Blondie - how are you? You know you are in my thoughts daily along with all the other lovely ladies here.
I really wonder about Calico. She hasn't checked in in a while. If you are reading this Calico, know that I am sending you hugs and love.
And same to you Hortense and Rosevalley. Love you all.
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Sky, I just want to thank you for sharing your story. I am new to the personal realities of this disease, and you inspired me. Seventeen years with this disease! I am just 61. I don't expect 17 years. Realistically, I can see five or six, maybe ten. Seventeen years means I would be 77. And there's no guarantee that I wouldn't develop some other disease of old age in the meantime.
I've worked on the other side of these matters, having had the hospice talk with people. Only you can decide if you're ready. The rest of just need to support you in the decision you make.
God bless.
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Sky I wonder the same thing,saying to myself the pain is not that bad...i can stil think and tak, dlnt want to shutdown too early. In my head i am there the body, who nows.
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Hi Lovely Ladies,
I was "misdiagnosed" at age 35. Correctly diagnosed five years later at age 40. I am now 57. I had a double mastectomy at age 41, after two lumpectomies. So, no breasts for all of these years, and I have missed them. All of that is in the early writings of my blog. I only share the story, and experience, for no other reason than to share.
I did do more reading last night about leptomeningeal metastases. The more I read, the more I feel my fight is over. I just want to live out my days as peacefully and comfortably as I can. I read a lot, well, with all this time on my hands...lol, and I suppose I'll write more if I feel inspired. The caringbridge blog has pictures.
I've watched this disease take the lives of so many. I've lost friends, parents, siblings, co-workers, relatives...and it doesn't seem to be slowing down. 40,000 women (and some men, I'm sure) every single year, lost. Every single year to breast cancer alone. Isn't that epidemic? We all need to do our part in posting on public forums this fact.
To put it in perspective, since Sept. 11, '01, that is 560,000 people who have succumbed to this disease. Half a million people! Does anyone else think that's excessive? Raising awareness is not enough! Finding a cure is the only answer! Because nobody deserves to have to go through what we go through with this disease. The tests, the scans, the treatments, the stress, the loss of financial resources, the strain on relationships, and the list goes on.
We're warriors alright. But I'd rather be a warrior for peace on earth, than this disease! I'd rather my tax dollars go to find a cure for this disease, than to build bombs and other weapons of destruction. Well...here's only hoping in my twilight weeks....
Peace.
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Skylotus - my heart is broken but I so understand your decision. Your grace in the face of adversity and willingness to share this with us is humbling and amazing. My fellow Buddhists and I are chanting for the best possible outcome for you. Sending hugs and light.
Terre
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Dear Sky...there's so much in what you're sharing that I can/and hope to relate to, when the time comes...loving children who want to be close to you, regardless of what may be a difficult journey, grandkids (I have 4...you have 5...lucky you!), wanting to live your life at home camping out together (our family surrounded my mom for 17 days from dx to passing), being able to accept where no tx may take you, but knowing you are strong & if there's any way to survive this-you will. Peace...there is an amazing strength in making this decision...and transferring that peace & understanding to your flesh & blood is truly amazing and a testament to your love and devotion to each other. Thank you for sharing with us...your other family.
The facts & feelings in your last post...an epidemic, understanding the toll this disease takes (no one would even want to believe it), finding the cure...being a warrior for peace...words from your heart that we understand...we feel the urgency.
My love and prayers are with you..and all my sisters. XOXO
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