How are people with liver mets doing?
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Hi Shelby,
I'm so grateful that you took to heart my thoughts on legal choices that affect your life, health and well-being.
Finding the right decision makers for you is vitally important and there's too much friction and distrust to rely on your sister and mother now.
We all wish you the best, including complete physical cure, but also hope you'll make the best choices to get YOU there.
Shelby, I want you to know how your situation and willingness to share have affected me. I've been experiencing decreased physical and mental functioning and am more and more reliant on others for caregiving, this includes my hospice team and caring circle (my chosen rather than bio family).
Yet, I'm reliving some of my early family dynamics - Will you be there for me? Can you support my idea of my care needs, by not projecting your grief, fear, worry on me? Will you respect my pain and process, no matter how dire? Can you tend me when I'm unable to care for myself? Can I trust you to show up when I need?
These aren't theoretical questions, but rather come up as I surrender more and more to the dying process and learn to trust in ways that I couldn't trust as an infant (long story of abandonment and inconsistent care).
Shelby, the details of our struggles differ, but I feel relived to know that we're both working on similar sets of life questions that were given to us by our experiences.
For the psychology and spiritual geeks among us, I offer this article which is really a meditation on how the dying still seek healing for our lives...and how our traumas open new doors and vistas into healing:
Attachment Theory and Spirituality: Two Threads Converging in Palliative Care?
https://www.hindawi.com/journals/ecam/2013/740291/
I know this is a little geeky.
The short version is, thank you, Shelby! I feel less alone knowing we live with related questions.
all love & high regard for all, Stephanie
Be patient toward all that is unsolved in your heart and try to love the questions themselves, like locked rooms and like books that are now written in a very foreign tongue. Do not now seek the answers, which cannot be given you because you would not be able to live them. And the point is, to live everything. Live the questions now. Perhaps you will then gradually, without noticing it, live along some distant day into the answer."
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Shelby, this situation you find yourself in just enrages me. I seem to be the first to read your posts as I eat my breakfast before work and just have to respond but do so too quickly. I'm just going to say that I feel for you so much. The pain of relationships and brokenness and disease. It overwhelms. You are not alone. If nothing else know and cling to that truth.
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shelby - i've experienced mood changes on drugs. trauma and pain also change one's mood and reduce our patience. this is one of the many things that gets out of our control. i have often had moments these last few months where i am saying - wow that is not me. anger is okay. god knows where it comes from or why you are directing it at your family. we're so raw that stuff just comes out. it can be a good thing.
there is an interesting opening or opportunity to work on yourself in all this. if there is any spiritual, psychological or energetic modality that speaks to you, i would do it. it is amazing what you can get done when your emotions and spirit are raw from everything that is going on.
that said, the goal of all your efforts would be grounding yourself and finding peace, not making your mother and sister feel okay. i am confident that there is a lot of love in your family, but the dynamics and patterns are broken and you are not in a position to fix right now. i am so glad that you have a good friend. only let in those people who give you support when you need it in the way you need it. one day your sister and mother will figure out the right way to connect and show you they care. they will do this on their own, not through your efforts.
i love your counselor. i love your best friend. nice work getting support.
glad the cyberknife procedure is successful and over.
sending healing thoughts.
>Z<
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Shelby, I am sorry you even have to deal with this. You have your hands full with the BC already!
I have at times had loved ones with very strange, disappointing, troubling responses to my BC that have caused me anxiety, confusion, rejection, frustration and anger. I ended up trying to keep my distance from them and creating my own "family" of caretakers from people around me who were positive and supportive. Some were close friends but others were only acquaintances who turned out to be very supportive. Some of my medical staff fell into this group, as did fellow BC women I met on boards or through my cancer center. Three of the people who took me to chemo were mere acquainces who offered and genuinely wanted to be there for me. I will never forget what they did for me, even though we were never that close. My point is that one never knows who will surprise you by showing up to the game and who will surprise you by bailing out. I hope you can cobble together the "family" you need from the people who show up to help you through the treatments when you need assistance!!! It may not be the people you would expect but it can be more therapeutic to have genuine support from an eclectic bunch that becomes your "family".
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Shelby,
So glad to hear from you. I'm happy the cyber knife went well.
My BFF was a very casual acquaintance before my Stage I diagnosis, and she INSISTED on attending the outpatient surgery with me to have the lumps removed. I could barely stand to have her there, fluffing my pillows, adjusting my blanket and reading to me because I'm a tough broad and I don't need that kind of help. We laugh about it now. The thing that I just adore about her, among many, many things, is that I don't have to take care of her while she's taking care of me .. it's just delightful to be cared for without any sort of angst on her part. She's attended almost every medical appointment I've had and we've grown to be the best of friends in the past 4 years. We've had a few ups and downs, but we are always able to sort out the downs in communication.
I have a brain MRI tomorrow. Haven't had one for 18 months, and since I'm having some audio and visual hallucinations, I want to see if they're drug related or the cancer has taken up residency in my brain.
Love,
Patti
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Patti let us know how you are doing ok.
Shelbs what can one say? You see you are not alone. There is this book "Etiquette of Illness", by Susan P Halpern, would they bother to read it? Who knows, sometimes hearing from strangers might alert them that it's NOT YOU, but they gotta think differently, It's an art, I must tell you. But so is our dealing everyday with everyone. When someone has an attitude and tell me it's because they are having a bad day, i am thinking DON'T even get me started.
The idea of how we look for love and approval, even in abusive or insensitive relatives, is a true mystery. That is Human nature, to long...Feel the love here, give yourself time. The fact that you cry or is angry, hey, why not? That's the question. I'd say, just don't stay on that road for too long.
How is everyone feeling?
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Hi all. Somehow this thread disappeared from my favorite list. I have a lot to catch up to
Will write later
Babs
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Shelby, I am so glad you got through the cyber knife procedure OK. Hopefully after catching up on much needed sleep and mental stress you will be up and around and enjoying life again. Who can blame you for crying over tis. The ultimate hurt is to feel like your family does not love or care about you. Even if they are just acting out of fear or misunderstanding, can't they put themselves in your shoes for five minutes to try and imagine even one slice of what you are going through? I know exactly how crushing it is and I am so sorry you are dealing with this on top of everything else. Please focus on your self care and hard as it is, block out the negativity. You need to feel peace and joy and comfort.
JFL, very good advice! I am finding this to be true in my circumstances.
Patti, crossing my fingers that it is the drugs.....
Hey babs!
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Shelby. I know how u feel. I think some family just can't deal with our illness so they act out. It sucks but it does happen. My son has been MIA so I asked him to meet up to discuss things. But never heard back. Thursday night I had my chemo and yesterday a liver biopsy so contacted him before the biopsy. He went off on me. I told him via text how I felt. I just don't think he can deal. But I can't deal with his not being there for me so I need to cut him from my life. I've tried before but that would mean the loss of my granddaughters who I don't see often but want in my life. I'm always in angst over this. We need to focus on us now We need to move toxic people aside Easier said than done!!!!
Focus on those that are there for you. You have wonderful friends. Cling to them. I'm blessed to have a DH DD many loving siblings and great friends. I try to focus on them and will work harder on that!
Patti. How are you today?
Hi artists!!! Waving to you
Bab
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Hi all. No news is good news, right? I haven't gotten the report back for the MRI.
Probably Monday.....
Waiting is not one of my strong suits....and here I am
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Hi Satti - fingers crossed.
>Z<
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Satti did you hear back, if not I'd call them. It's just beyond normal understanding what these so called docs and office staff could put you through. We had a surgeon, that would call us every time after my daughter had a scan even to say things are good. Then there are other offices that just asking a question could trigger a World War. Just today, I forced myself to send an email to doc to follow up on a question re: pain, usually I would just wait for a call back after I had left a message, but I don't trust them anymore to automatically follow up.
Babs dear, I totally get you. You could understand things that he will, but only in the long future ahead. I think one day he's gonna wake up. They have to grow up obviously, some take longer than others. It's very painful. Take good care of yourself, you have so much to deal with, you have your DH and daughter.
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hi all
MRI came back stable abnormal. Nothing new happening.
Yea!
Thank you for your love and support
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Sattiperl- stable is wonderful! Congrats!!!!!
Bab
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Satti - yay.
>Z<
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Satti this is just perfect! Enjoy!
Onco asked for "unstained slides" from the latest Bone biopsy, but I don't know what info they expect to get from that. Does anyone know? They already went over the "stained" slides, and the diagnoses matched. I am very anxious; it has been the first time in a very long time, that she did not have Pet/Ct done in two months. I would have asked for the scans already, and I am sure they thought about it, but we know she was feeling a lot of things, and the Xeloda, she will restart this weekend the 2nd time, so I guess we should wait. How soon would Xeloda kick in?
Feel well everyone.
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Mom - Much love and healing prayers. No answers to your questions as I have no experience in the space you and Dani are in, but I am thinking of you.
>Z<
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Zar appreciate you taking the time..
I posted this in different threads.
QUESTION: I am trying to find out the following: I have asked in the past for progress notes from the RO (I've gotten from this one and from the past RO also), from NeuroOnco that we just visited, from surgeons and even from past Onco. This week,when we asked for the progress notes from the current Rads treatment, the secretary said oh no, we don't give this to patients. I know she is wrong, we are entitled to reports (call it what you want). But before i speak to Administrative secretary, i don't appreciate it when people that are secretaries wave the power flag, I wanted to ask - How did you, ladies, get some records from any of your visits. The scans we get from the Radiology, no problem. Blood work is accessible also. But there is no info in the Portal from the visit or assessment of doctor.
I like to have paperwork with me for many reasons: first I like to see what they wrote. And also, it's much easier to have the paperwork if one wants to ask a question either to the current doctor or take it to a 2nd opinion, I don't need to beg the secretaries to hurry it up etc..
It's certainly one last thing we need to deal with now. I requested something that pertain to me (the patient), and it should be, yes ma'am of course.
Thanks
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We've read a lot of discussion here on caregivers. If you feel inspired, we are looking for stories about your caregivers- what helped most, etc. Caregiver stories. No pressure, just putting it out there
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Shelby, it is not you! It is them. I am a daughter of a narcissistic mother--I am pretty sure your mom is one too. You are their scapegoat--your sister has the role of Golden Child--you don't need this when you are so ill with cancer. Stress makes cancer worse. You need your mom and your sister away from you. How dare they mock you, put a guilt trip on you? It is beyond cruel. Surround yourself with friends who love you. Draw a line in the sand. "I have the support I need right now. I can't add negative energy to my life. You are not welcome to come here." If they call you and try to put a guilt trip on you, hang up!
Giving you all the hugs I can across the miles.
Deedee's sister
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Update:
I did send a request via email. I sent it to main RO(chief), NP and administrative secr. They all know what's going on with each patient anyway, so I might as well just cc everyone. I did not wanna deal with one person's mood over the phone, so this is the best way. I wrote that I had always gotten the records, it's important to keep the paperwork, just pretty much the facts, that "the" secretary said the patients don't get that info. I specified date of treatments etc… Was not nasty but to the point. I hightlighted how the Chief and NP said no problem, but at the other level that's what we encountered.
Anyway, we got a response back almost immediately, saying this is unacceptable and asking if so and so is the one we had a problem with. I answered back in the affirmative, and that I hated to name her. Anyway, RO also answered that she was horrified. I don't have the paperwork yet, she just finished on Friday, but I know they will send. And so it goes….She is not a bad person, just one of those that are stuck in 1850…
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Momall-I knew they would give you all of the records-they have to. Medical records are the property of the patient.
Glad you got such positive responses!!!
Babs
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Thank you DeeDee! I've been on a road trip I decided to take last min. I'm on my own and only told a few very good friends I was leaving.... and of course my sister got all pissed but oh well. I am gonna let them hurt me or ruin my vacation. I'm heading back to Reno tomorrow to learn what's my new chemo. I desperately need XRT on my lower back for pain. I'll right more whim home and nothings hotel room!
Mom all- when I was forced to retire due to this stupid cancer, I was the director of the community's largest hospital system s HIM Dept. Aka medical records dept. Plz if you or anyone have questions or problems getting your records, I can help. I know many states and all of our federal rules and regulations on ROI (release of information). I'm glad you goat's. I can help you to alleviate problems inn the future.. pm if you want help.
Satti, congrats girl!!
Xo ladies, shelbs
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so last night was the ACS night of hope gala that I I was keynote speaker for. The raise the paddle was for patient navigation services. After my speech we raised over 50,000 for patient navigation services during our raise the paddle. I am honored to have helped that program. I don't have Final numbers for the auction but I am proud to have participated in the planning and execution of this events I had you all in my pocket with me.
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Shelby dear,
Your Mom and sister are behaving in a way that is hurtful. The human prychie is strange, they might be scared of loosing you and take it out on you. It sure would be nice to have a soft place to put your head and loving arms to hold you. They really don't understand that you need them and this isn't something you chose. After dealing with listening to your fears for 5 years they sound done...You responded well to your mothers insults.
Hugs to you dear...
I have lurked over the months reading this thread because I didn't want to believe I have liver mets (only place so far). I can tell others are uncomfortable talking about my cancer (something I think is daily) so I stuff it down. Had a CT scan today (yup on a Sunday) hoping all is well.
Wish I could hold your hand dear Shelby!
Barb
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Thank you Babs,waiting with you.....
Shelby that's sooo sweet. I will keep it in mind, it could be so helpful. Sometimes some ppl could make life so difficult, for no reason.(ignorance is the worst). Yeeh for your trip!! You are one smart lady.
Bstein, when did you feel something was not right? Did you do a CT or Pet/CT? So the doctor ordered it urgent? I've wanted Dani to have s CT for awhile just in that area, she has innumerable lesions, but so far they are only going by the PET/CT. Hoping for the best, you are always so helpful to all in your posts.
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Whew, Sattipearl. Glad the MRI was good news for you. Shelby, good for you, taking a trip on your own terms. Leftfootforward, well done and congratulations! Welcome, bstein. Yes, it is so good to be able to come here and talk with people who understand. I'm glad you decided to join in.
So we are trying to figure out why TMs keep rising. Not dramatically, but steadily. Having only used PET/CT to monitor, I had my first CT with contrast recently. Wow! The effect of the iodine solution was intense. I felt like I was holding fire in my hands, and that there was another fire in the nether regions. Dizzy, faint, heart pounding. I knew I had to remain still, and hoped the nurse was watching in case I fainted. She told me after to ask for it to be pushed more slowly next time. The report showed nothing dramatic, thank goodness no new weird ILC mets sites, but the "lesion" in the liver in the area of mild PET uptake went from 2 cm in June to 2.5 cm now. I do not know if that is significant. I haven't talked to my onc yet.
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Shetland, I don't know if that will be deemed significant or not either, but I am hoping for the not. Keep us posted. I'm thinking of you!
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hello ladies,
Im sorry I haven't been able to write much, between having problems at work (because of my past cancer) and feeling down because of my mom situation. She had stopped chemo because of nerve damage in finger and toes, and couldn't tolerate tamoxifen, her ct scan came back lungs and bones are stable but liver grew from 8mm to 2 cm and there are new spots, this scares me tremendously. She will be taking two chemos Gemcitabine and carboplatin, anyone tried this, can you share how they are? What are side Effects? What to look for?
Thanks
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Shetland, from what I know they could radiate if it's just one tumor, but of course this is just general info. Let us know
Coni, all I could say, yes my daughter was on these, it's a strong treatment but a lot people could tolerate it, watch for the SE's, and speak to Onco how they could help. Take good care. Just aside thing, Xeloda (oral chemo also), has helped many people with liver mets.
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