"Hail Mary" miracles
So I'm sitting here in the hospital, wondering how I went from some shortness of breath to possibly the End of the Road. It really wasn't so bad before, but now I can't breathe and they act like it's no big deal. I am literally struggling for breath, but they say the oxygen level in my blood is too high, so it is okay that my pulse ox is 90. In the meantime, I'm breathing like I just ran a marathon, and this is after having a little nap! I was previously in a hospital that was new and small and everyone was fabulous. But they don't do chemo there. So now, I'm in a horrid, industrial place where everyone is running around and acts stressed and really couldn't care what's going on because they've already decided you're going to check out (I mean die) any time soon, so what's the point?
On top of that, I have brain mets that they haven't had time to zap with gamma knife because they are more concerned with my breathing (not that you can telll) I am going to start Navelbine tonight (was supposed to be this afternoon, but you know these types of places_) I am all alone because my daughter and DIL left to go home and shower and nap. They will come back "if they can," which I don't blame them for. Who wants to spend an entire day after day keeping someone company who has no modesty. who has a catheter bag,who farts and pukes and all the rest?
I am not afraid to die. I figure that God has given me 5+ years of stage 4 life in which to raise my kids as much as I could, and I would be ungrateful to not try my best to be strong and as healthy as possible for them now. And if God takes me earlier, so be it. I will be with lots of loved ones who went before me.
But I can't help wondering...how many of you have known PERSONALLY or experienced PERSONALLY a Hail Mary treatment? What I mean is, when doctors have given up on you, hospice is called, and you're told there's no hope. And then, suddenly, a chemo starts working, and the person is NED or stable for the first time in a long time? I'd love to fantasize about it, but I doubt it will happen to me. I'm just stunned at the speed with which this cancer has grown in my lungs and probably brain and liver. Suddenly all those things I've been putting off seem so much more important, while other things I was planning on doing seem petty and useless.
Comments, if you have them?
Comments
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Dear raro,
We're with you in that horrid place, holding your hands and listening to your farts. Keep the line open to us--maybe we're your hail Marys.
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I am here too.
I know of a woman who signed ingo Hospice over a year ago with brain mets. I dont know all the details but she is still around:)
The importnant thing is not to give up until you are ready. You are are a valuable and should be treated with love and dignity. Its hard to be sick and vulnerable and have to be your own advocate, I am sorry your daughter and dil are not there. But we are here, keep posting and we will keep you company.
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Raro , hugs
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I am in Australia, but also with you, raro. Xxxxx
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Raro,
I feel Huge waves of empathy for you...Oh my you should not have to be alone in an unfriendly environment. And I might add hospitals have become dangerous due to short staffing. Of course I have heard of someone who came back from your stage...Her name is Dottie Osteen and she is the mother of Pastor Osteen of Lakewood Baptist Church in Houston. She wrote a book about her experience and is now almost 80 years old. I am not offering false hope just stating that NO ONE knows when we are going to check out. You buck up and keep fear away and hope in your room. I hope your daughter and DIL return soon. Someone needs to stay with you . Know that there are people out here who are thinking deeply about you...You are brave and deserve to have the finest of care although that is rarely available in our health care system. My prayers are that you find hope in the morning. Carolyn from Nashville.
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With you too Raro, keeping hope alive. S.
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Raro, you are never alone God is there and so are all of us, and I do not believe this is the end for you !!!!! Now tell yourself this is just another bump in this journey we are all going through, Woman your work is far from done I remember a time quite awhile back that I posted on here scared to death and you basically told me to put my big girl britches on and that all will be ok and I believed you and still do, you my dear are a true inspiration to not just me but, many on here so we still need you so Raro put on your big girl britches because all will be ok and you are tough I know this from the words you have posted, sucks that one must hear their own words used against them huh?? haha I will be praying for you and be checking on you constantly and if you need to talk I will give you my cell number and you can gripe, cry or laugh whatever you need just let me know!!!! FIGHT WOMAN FIGHT!!!!
Hugs and Prayers,
Deb
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Raro, it is hard not to let the fear get to you but don't let it keep you down. We are with you.
Xoxo
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I hate being in the hospital and I feel for you! It's scary and things just come at you, little control and even less humanity. Try and center (calm focus) yourself so you can breathe better. If you can't feel better about breathing, then ask for some ativan to help you with your feelings of air hunger! Don't be shy ask. If they don't have an order they can get one. I hope navelbine gives you more time. Ask for palliative care so you are comfortable.
We will be with you in spirit - maybe in the pocket of your hospital gown if you have one with a pocket! Prayers and light for you and your family. Right now rest and breathe slowly and send yourself great compassion and love.
I just thought of something that might bring you comfort. Remember that John Lennon song "Let it Be" - sing it to yourself in your mind. It's comforting and has a lovely melody - "in times of trouble Mother Mary comes to me, speaking words of wisdom, let it be." If you have a rosary perhaps that too might help. I bring that up because I sat next to a young woman in chemo that prayed her rosary and hummed and it seemed to help her.
((((Hugs)))))
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here with you too Raro. Over here in New Zealand. Xx
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I hope you are starting to feal the warmth in the room from all of us being right there with you. I so believe in miracles, I also believe that no one knows when you are going to check out. Try to keep your chin up and remember that everything happens according to Gods plan. My thoughts and prayers are with you.
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Raro,
My wish for you is to have a "Hail Mary" miracle that you so desire.
Love,
Brenda
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Dear Raro, the main thing is to keep after the medical team to enable you to breathe easier. You should have oxygen 24x7 and scans to see what's what in your chest and heart. And they should also check for clots. Once your breathing is much better, hopefully other good things will follow. This must be terribly difficult, and you have my thoughts, prayers and hope that you'll become stronger soon.
That said, in answer to your question, I know someone who flunked hospice - and that was 18 years ago! And I know a man who was given 2 months to live, and he had 5 years of chemo (I cannot imagine it!) and lived to old age to pass on of something else. Yes it is rare, and ye, it does happen!
Please try to take one step at a time. Once the breathing improves, then you can take the next step.
By your side hugging you!
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I'm with you, too, Raro. Dang, it's getting crowded in here!
Tina
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Raro- I am a Stage IV and also a former hospice nurse. I think in many places you can still have hospice for palliative care even if on your on chemo. I am praying that treatnent works quickly for you. Ask for an anxiety pill as I too had terrible shortness of breath six months after RADS and pulse ox always normal .They also finally gave me an inhaler which sometimes helped. I can tell you that I feel like a miracle happened this spring when told I would need to go back on chemo. The cat scans showed that the MRI was lighting up d/t an injury 2 months earlier, so was not the cancer spread they had just told me . I am in remission now- God answered my prayers and I give thanks daily. Some hospitals are so short staffed and they do not spend enough time w/patients. As a hospice nurse I sat w/so many and held hands. You are typing very well so I can see your brain function is still pretty good. I am praying for a restful night- day for you.
Not sure what another post means regarding" centering yourself".Trust me when you can't breath this would not help. Ask for an anxiety med like Ativan or Xanax to help you get some rest. Please feel free to PM me anytime. Hugs and prayers coming to you right now.
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Raro, everyone on these boards us here for you. Wish you weren't so short of breath. We all send our love.
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Dear raro,
You are NOT alone and this is NOT the end. You have much more living to do and more time raising those precious children. I feel badly you are in such a heartless place right now, but surely someone can advocate for you. Your family isn't far away, so maybe just like the holidays they'll jump in and get the attention you deserve. Prayers for you tonight and all weekend your breathing gets better and a Hail Mary works in more than one way.
Hang in there raro...
Amy
PS do you have fluid on your lungs that needs draining? I just know you'd breathe easier if that was the case.
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raro!!!! Wth?!? Get out of that hospital! I'm just playin. But what is up with the quality of care there? I hope your daughter comes back to help you out and entertain you. Farts, vomit and all. This is not your time. This treatment is going to get stuff in check! I can't imagine the breathing troubles...makes me anxious just thinking about your breathing. Meds! Ativan! Now! We are going to be here for you no matter what. You have so many people loving you and praying for you. You just rest and let us take care of you.
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I am with you also. I am new to this forum but had a crash course in breast cancer. I know that you feel afraid and alone but every woman who knows a little of what you are going through is holding your hand now.
Thoughts, prayers and love surrounds you. You are not alone. Hang in there. You are strong.
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Raro, I'm here, too. Read through all these lovely posts and see that you have made a big impact on the lives of many of our breast cancer friends. It is obvious that you are loved by many here at BCO. Hate that you are in the hospital and alone for a time. Focus on yourself and your breathing and not the negative stuff going on in the hospital. I agree that asking for meds would be helpful. Hope you are able to get the rest you need and that your breathing improves. Blessings, glenn
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taro,
My thoughts and prayers are with you. I also pray that those who are caring for you understand the meaning of care and compassion. Thinking of you.
Caryn
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Raro don't lose peaceful hope. I just got one... A Hail Mary pass that is. Well almost a year ago now. My liver mets had obstructed the LVC - and blood supply to the lower half of my body was being shut down. I had failed 3 lines of hormonals and two chemo lines with only progression. My Onc recommended hospice but offered a final line. I had 6 weeks if progression not halted. The choice was cisplatin and good ol vindo. My statistical chance of success was minute and even if it worked the evidence suggested it would buy me only three months. After two cycles I ended up in hosp with multiplepulmonary emboli and again did the debate about treating or not. Opted for blood thinner treatment and nothing more. Scan for these however showed a blurry bit of liver with what appeared to substantial reduction in mets. Contrast scan two cycles later showed 90% reduction in mets and now at last scan the liver was fairly clear. I've just returned from a couple of weeks in Paris over x'mas. I talk with my hospice team still every couple of weeks.
I won't bore you with the details of evil chemo and fallouts of pulmonary embolism. Just know that the unexpected happens. And vindo in particular seems to be a good drug to bet on. I continue on it alone and while I have no idea what tomorrow will bring I'm pretty glad to have this window.
But stay peaceful - and love yourself down every cell and molecule. Trust resolving this may take some time. I spend more time alone as I get deeper into stg 4 mysteries - I get tired of dragging everyone through the drama with me. And it's okay - a different way of being.
There is a lovely line in one of my meditation tapes....goes something like this
Imagine all the good thoughts and caring everyone has ever felt for you and sent your way gathering around you, keeping you company and only wanting the best for you..
adding my caring thoughts to those already gathered to help your heart stay warm and comforted.
Hugs,
Sophie
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dear raro
like everyone else im here with you and if you get lonely and need to talk to some one give me a call I will pm you my number . I don't care what time it is im up most of the night anyways . I feel like so many this is not your time . but we are there for you and with you please keep us posted and know we love you I will be saying prayers for you .and again if you need to talk call me it doesn't matter wht time it is ...love chris
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Raro - I was just reading through old posts yesterday and wondering how you are doing. I don't have any stories or advice, but know that I am thinking of you and hope they can get your breathing issues under control. I don't like that your medical team is not caring for you in the way you deserve. I agree with the others that you must demand what you need. Atavan seems like it would be a good choice.
Now close your eyes and feel the healing energy we are all sending to you from every direction
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SophieJean, thanks for sharing that meditation saying; love that and will remember it.
Raro, I agree with Bestbird: keep after your medical team. It's okay to be a pain in the rear and be insistent that they help you with your breathing. Also, ask your daughter and DIL to advocate for you by making sure the medical team is assisting you in a timely manner every day.
I am sorry you are going through this. We are here for you. You are in my thoughts and prayers.
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Raro, Adding my hugs and prayers to come your way. Insist on getting all the help you need - you deserve the best.Linda
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gentle hugs and Hail Marys coming your way0 -
Raro
Hugs and prayers from me in the room with you. Now for action: request a patient advocate from the hospital and a new doctor. My moms doctor actually told us to take my mom home to die. He was abruptly thrown out of her hospital room and a new doc treated my mom and she went on to live for two years with SIV pancreatic cancer. She lived, travelled and saw milestones of her grandchildren. Hail Marys are possible but need to be mixed with determination. Love you and wish you comfort and healing
Maureen
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Raro, thinking of you. Remember that Teri (capriness) failed hospice. That wasn't even a Hail Mary pass. With the Hail Mary, who knows?
I hope you are breathing better this morning.
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My prayers are with you also. I had a PET scan yesterday and the nurse told me about someone who had a "Hail Mary" miracle, I pray that you will have one too.
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