patty
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Patty. Never look back. We can’t change the past and you made your decisions due to your deep love of your boys. That’s selfless. And taxol may not have worked. It failed me and others.
Just know we’re all with you always
Bab
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Patty - Praying you find the strength to be the best mom possible with every moment you have, whatever is going on. That seems to be all you care about. I get totally that. You have a lot to teach them still. Keep going.
>Z<
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Love & many big bear hugs.
Thanks so much to Shannon.
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Patty, please don't second guess or have regrets about a past decision. You followed your heart, and for all you know, Taxol might have been a horrible drug for you, especially with C-diff lurking in your body. But what I'm wondering — especially since your brain MRI was clear — is there anything else they can offer you? Something lighter than chemo? What about A+A? Or a trial? Or ??? I know you've had a rough year or two, but you've alsohad some remarkably good spans when the C-diff wasn't complicating things.
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Dear Patty,
You made the best decisions based on what you knew at the time. That is the best anyone can do.
Youll be home soon where you can love those boys! Hootie hoo and gentle hugs for you, friend.
Kathryn
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hi Patty, the best part of being a great mom is that the kids will know what to do even if you didn’t teach it to them. They will remember you, your love, and what you would do when they need yo
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No regrets, my friend! You did what was right for you at the time. it may have helped, or it may have sped things along. There is no way to know, and no responsibility for "maybe" rests on your shoulders.
I am happy to see you post on your own, though. I am glad you have such a great friend with you right now.
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Don't waste your precious energy in what ifs. Embrace hospice or palliative care. They will take care of you, hopefully manage the pain so you can be with your boys. My Gma went on/off hospice for several years.
Thanks to Shannon. We so appreciate knowing.
hootie hoo!
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Patty......I had only just joined when you became sick and began to post less but I've been keeping informed by reading others' posts. I just want to say that I'm praying for you. Peace, light and love from Australia to you. Your boys will remember you by your aura. And when they are older and hear the stories of your courage and love for them they will remember that. It will come back to them.
Thanks to Shannon for your help in letting Patty know how loved she is.
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this is patty. Been unable to sleep. My brain is racing. per nurse ev n if I had had or will try taxol
I r m mbeto seeing mo yesterday but for the life of me bi can’t remember what he said. No rose said his notes say they r just waiting on me to accept goungbhome with hospice hopefully by end of week. I am scared 😪. I don’t wanna quit. I have so very much to teach my dss Kinda bnfreaking out. Mo gave me s rx for Ativan in beginning of January but I haven’t taken them often. Actually have many many young tenets
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I imagine the anxiety you are feeling is totally normal, Patty. I love your signature line - to God be the glory. Even now, when things are dark and difficult, I believe there can be grace and glory. I'm praying for you and your boys. Whatever the path forward is, you will find it.
Snowfall
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Hi Patty. I am a Hospice volunteer. Going home on Hospice is not quitting life or giving up. It is just a different way of managing your serious illness with great medications for pain, anxiety and sleep relief. You will also receive help to assist you in the comfort of your home. Believe me, if Hospice sees improvement, you will go off their service.
You have every right to be scared. You are a young mom trying to raise your boys and deal with cancer at the same time. You are reaching out to us and we are listening.
Our heart feels your heart. Keep posting.
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Hi Patti...I admire your strength but please don't think that Hospice means you are giving up. They are a wonderful organization and they will be a great support system to you or your family. They will take care of all the details. Meds, equipment, and the most important being pain control. You can always change to Palliative Care if you decide you want to start treatment again. At the very least have them come in and talk to you. You are in my thoughts and prayers.
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sending hugs. Hoping you find peace, but understand the anxiety. There was a lady several years ago I followed her blog. I remember how much faith she had. She was married to a preacher. She had four young children. She always prayed for God’s grace. When it was her time to go on hospice, her words are forever etched in my mind—I don’t want to go. I’m not ready to go. I feel like a little girl pitching a fit kicking and screaming. My father is reaching out his hand to me. He wants me to take his hand, but I don’t want to go.—her words reached inside of me...this is exactly how I imagine I will feel. I’m guessing all mom’s feel this way.
I love you sweet patty.
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Patty, sending you prayers, love and hugs. Don’t beat yourself up over your past decision to not take a treatment offered. You made the right decision for you at the time it was offered. As some who did do that treatment have said it doesn’t work for all. SandBeach and dtad offer some excellent advice. There is nothing wrong in having help at home. You have done so much for others. You deserve help. You have a wonderful friend in Shannon and I thank her for helping you and keeping us informed.
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Please do take the Ativan. It won't make you 'goofy'; it will help you focus your thoughts.
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Patty, you are in my thoughts and I wish you peace with whatever decision you make. Trust me, your sons feel your love and will never forget the lessons you have taught them. You have been a tough fighter and I admire your determination.0
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KJ that quote is perfect!
Ativan will help with those whirling thoughts. Take it. You want the help. We know you are scared. We know you are kicking and screaming inside. We all feel your pain and worries and fear.
Everything is 10x worse when you don't feel good. Let others carry the burden for awhile. Gain peace then strength. We are always here.
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Patty, I wasn't able to sleep much either. Thoughts banging around in my head filled with worry about my MBC sisters and life in general. I thought about you. I thought what a good mother you are. What a good person you are. Take the Ativan honey, it will calm you down. You need to be able to gear down. I know you're scared, I am scared too. As others have said, hospice is not giving up, its coping and allowing yourself to be comfortable and cared for. You have to be good to yourself. Don't ever feel bad about having to have the help you need. We love you dear Patty. Yes we do! Much love ~M~
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Patty, holding you in the light, sending love. MJH
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Patty, I am lifting you up in prayer. My thoughts are with you as you decide upon your next step. Do not look back with regret. The words "If only", "what if", "maybe if I had" are easy to say, but are meaningless. You are and always have been a good mom. We make decisions on the knowledge we have at the time. There is no way to see into the future to know what the impact will be. Your past decisions were right for you at the moments in time that you made them. None of us have any control over this ugly disease. Concentrate now on loving your boys and taking care of yourself. God has been with you every step of the way, and He will continue to hold you in Hisloving arms.
Hugs and prayers from, Lynne
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Here's a favorite space of mine at the San Antonio Botanical Gardens. So peaceful and relaxing. That is what hospice care can be like. I have volunteered for my local non-profit since 2004, and it's all about lifting your responsibilities and pain. Let someone else take care of YOU for a change. I've seen people come into it, and leave because they are feeling better, just because they have a little less stress. And take that ativan! It won't make you dopey, it will just take the edge off the anxiety, which will make you feel better all the way around. Let people love and care for you, sweet lady. It's not giving up, it's self-care.
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Hello my dearest Patty,
Holding you especially close now, and sending much love and peace your way.
I know this is scary. Take the Ativan if you need more support. You have always made the best decisions for you and your boys with the information available. Treatments don't work for everyone. Listen to you MO. Listen to yourself. Listen to God.
My mother had been very sick since December with terrible infections in her spine. We tried treatments, and brought in palliative care. After some scary complications, Hospice was recommended.
Mom did very well on Hospice. Her pain was managed, and she had much better days. She just passed very peacefully on 2/28.
Love you,
Hootie Hoo!
Madelyn
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Patty can you do pallitive care and still get treatment. I dont know how it works. Praying for you and your family. We love you
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Patty, glad you are here. Sounds like a good day. Praying. Thank you to Shannon for ll she is doing. Wrapping my arns around you Love you
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Patty, saying goodnight to you. I hope you're able to take your Ativan and get some much needed rest. Your body heals during rest. Dream of happy things of beauty, throwing snow balls at your boys. The sounds of their Laughter. Fun things youve done together. I hope you sleep good and have a better tomorrow! We love you. My two words of the night for you are: you're loved....
hugs and love ~M~
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hey bco sisters. Today has been a really good day. Totally alert. Have eaten and drank a bit. Sat up and visited company from 9-4. Really feeling so much better weird indeed My live functions are within normal.
I did get 2 more units of platelets this morning and I will get two more tomorrow before biopsy and 4 units of blood during and after biopsy.
Mo and I decided today that tomorrow I will get a bone marrow biopsy. Will know results Monday. He said this will tell us if I am not maintaining platelets or whole blood due to the cancer or chemo.
If it is the cancer taken over the bone marrow then no more tx. Will start hospice at home Monday. Dr said weeks at best was his survival guess maybe not that long because platelet count is 9. He said could bleed internally or externally for absolutely no reason so I would die prob before I could get to hospital but I am dnr and that is life saving measures which I have refused. Only want my pain under control.
If the bone marrow is because of the carboplatin chemo - which is known for keeping platelets and H&H down. - then he really thinks taxol will make a huge difference. He has been talking to me about taxol for several months but I didn't want dss remembering me bald. Now I am afraid I waited too long.
Crazy how my bottom line has been changed a couple times. I don't want to continue txs up til I die simply because I was to scaredto quit.
Darn big girl decisions. Wish I was a young girl and my parents could make that decision for me.
Mo said if was his wife or mom he would at minimum take bone marrow biopsy. He agrees is unethical to continue to treat me when more harm then good is being done.
Last night nurse wouldn't give me the Ativan that I have prn. I haven't taken it since being here but it is in my chart as available. How her nurse said she wasn't comfortable to give me both the diladid pain pump and the Ativan. Tried to explain going to hospice so why not but nurse said they have to list it as comfort care otherwise they would be lagalky responsible should something happen. Grr. I told mo who said absolutely ridiculous. Said if they're won't give it to me then to tell them dr said to call him regardless of time and then he said if still nothing for me then I will call the after hours number to reach him
My lil sister is coming in from IL on Saturday. They just left like 2 weeks ago and she stayed two weeks then. They already had motel reservations for week of March 22 cause that's their kids spring break. So she will stay with me til they all come and go back home.
My older sister from Alabama was packing her bags also. She also just left. I asked her to wait til Donna leaves unless something changes for the worst. Then I get more private time with them plus will have their help for longer time between the two of them.
My bro has been estranged from our entire family for many years. Told my sis last visit to do NOT call him either now or after I die. He never calls. Never cares. He is a functioning alcoholic but I just don't need that stress around me. He called last night drunk. wanting to come but I honestly just refused. He only lives 3 hours away and we have both been in each other's town very often but never visit. Was mad at sister who explained she didn't want to be responsible after I die to explain to him why he wasn't told. Still not happy but not trying to hold a grudge at this point in life.
Thanks for listening. Love y'all. Hugs
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Patty, it is do good to hear from you and know that you are feeling so much better. I have no words of wisdom for you. All I can do is tell you that I support you no matter what you decide to do. I continue to pray for you. The bone biopsy will give you and the MO need to move forward. If taxol becomes something that is available to you, I know whatever decision you make will be the right one for you. You sound like you have found a certain peace within yourself. I am glad your sisters will be visiting you. The bond between sisters is special. Sending you big (((HUGS))).
Hugs and prayers from, Lynne
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Hi Patty, so great to see you posting. You really sound like yourself sweetheart. I am really hoping that the marrow comes out ok. You need that to sustain everything. I hope that nurse that wouldn't give you your ativan last night stubbed her toe in the dark on her way to the bathroom last night... the dumb dumb should have checked with someone. Especially if it was listed in your chart. Sometimes the squeaky wheel gets the grease. I hope you'll get it tonight. I would start asking for it now. Just in case you have to go through the doc. It will help you rest your mind. That will help the movie in your head that you're watching, stop playing. We love you. And are here waiting to hear from you every chance we get. Much love my friend. 2 words for goodnight are : get ativan!!!
Love you! Hootie Hoo!
Just so you know.... I believe every family has it in some form or another, estrangements, disfunctional... sure enough mine does. You chose the right thing. No one need drama.
~M~
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Patty I am so glad to hear you sounding better. I am also glad that you and the MO have a plan in place.
But the best is that your sister are coming to be with you. Sister time is SOOO special!
Babs
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