Time for Hospice.....UPDATE JAN 3, 2016
To me for the update. This has been much harder than I anticipated. I knew it would not be easier s y, however, after 5 years, f ok nappy hitting stable for the first time at a b poo it 4 years 10 months, then to only be there for 2 months b4 the Aromas o n stopped working! But, realistically, I feel I was stable for the 17 of the 19 months that the tumor markers were going down. They did not consider it to be stable until I reached 25. At that point I was very 0ptimistic, yet waiting to see how long it would last as Dr. HONG Kong told me at the onset he expected about 15 month s is it n worked, once again I did a little better at 19 months, that was when I had my first change in the markers. It went to 30, up to 30, than 60,90, and my last visit he just said it doubled.
I saw the rad s onco, Mind a y b4 Christmas with my son's. She said her only option is the whole Birmingham rad s. My son said, uhh our are offering it but do not underscored. She said there is all the paperwork to get approval from my insurance an d. Medicare, and there is less than or = to only a 50% chance it will work. There are serious security, such as low white and red cells and no guarantee they will come ha v in up. I could end up needing transfusions and bequests shots. It will not extend my life. It n is palliative care. In then asked her to check the least scans and see Wyatt ongoing b&b on w/right foot. She said 'honey', it never goes to the feet, I said I understand, but will you see what B-) is going poo n with it? She humored me, said OMG. I have not seen this, you have tumors on your right ankle, top bones and big toe. We all laughed as she said, if you think it is tumor it is. Every so o t you have asked a b&b out, is tumors. So I then asked her about on my face right side by sinus, and yes there is a tumor.
It was not a great visit. She too says I could still do the Gemzar, but that has about 20% chance of helping with the pain, yet, I will be dealing with all the se which again are'm palliative (for pain), not expected to prolong my life.
Tuesday I see my onco. I need to let him k nowing I am going to do the chemo or radiation. AFTER STUDYING BOTH OPTI PPL NS, WE, AS A FAMILY HAVE DECIDED NOT TO DO EITHER. THE NEGATIVE SE OUTWEIGH THE POSSIBLE BENIFITS. So, it is now just when and what hospice company I am choosing to use. The one I want is Brighton Hospice. However, the medical director of Quality Hospice is my pain management doctor and she is familiar with all of my issues with pain meds. They will keep me on Fentanyl w/finalised as a breakthrough, she r was, starting with Brighton, they will insist on trying Morphine (which I do not tolerate, I get combative and very ill), but they give weekly acupuncture. And no-weekly therapeutic full body massages, and I get them now at the Cancer Wellness House. The acupuncturist and masseuse are amazing, both are certified for cancer and burn victims. So... we are having both companies come for an interview and that is (2h, ow I will decide. Brighton will have an audience 2x a week to help me shower, as well as the nurse who will do blood draws and flush my port.
Brighton is willing to spend more on their patients, and the massage is amazing.
The hardest part this time, is I agree I am out of options. 2 1/2 years ago when they were pushing hospice, I did not feel it was time or that everything had been done. This time I know I am out of options and the pain has increased so much, fast, that I feel it is time or close for hospice. I have struggled with knowing my time is running out. I finally accepted it 5 years ago, then got complacent as the time kept coming. Now I am working on putting it in God's hands, I have done all I can do physically. This is hard to do. A lot of emotions, some fears, and at times a real sense of peace, yet, one of the hardest decisions of any that I have made.
With it also comes friends and some family questioning if I am just giving up. Some of these friends have questioned every move the doctors have made. Now i have answered a few by stating when they get MD, Oncology after their name, then I will consider their opinions, but until then, I prefer being treated by the one with 12 years of classes and basic training, then a residency of up to 8 more years to get hired on here in their specialty! That has mostly stopped the pushy ones without a clue, then there are a few who have read a couple articles and want me to discuss the findings with my onco. A couple were pushing the hemp oil as a 'cure'.
I am beyond the trials that have come out and I understand that they do not understand that trials are for different bc, different stages, depend on first lines of treatment etc. I am patient as their hearts are in the right'm place.... until they get pushy, then I back off or have asked a few to, and cut more out who were b&b stressing me b&b out b&b pushing their boundaries. Overall, most just want to be helpful and don't know what to say or do now.
Different stages of this journey require softer gloves for friends, and its time to take off the boxing gloves and live as well as possible to the end. Both my rad s onco and med onco said, because the cancer is in the bones, it could go on longer. This is not always a good thing as the pain will increase to the point that I will lose mobility... both feel about 8-12 weeks from last week. The pain just gets so bad I will not be able to walk distance, but should be able to get to the rest room for a while. They both think maybe 6 - 12 months max, but both said that is just based on me asking and what they have seen. My onco said but with me, he has no real prognosis as I have not follows anything, that it is in God's Hands if'm we are getting philosophical! LAUGHED.
Just keep praying f you believe in it. I do. With as much cancer as I am riddled with... even doctors are all surprised!
Love you all and thank you for the support, my sense of humor is still functional and gets me through a lot of really hard, emotional times.
Huge to all
Carol
Merry Christmas to me. I was trying to put this all off till after Christmas. Saw onco Tuesday. My tumor markers doubled again. It is definate the Aromason has run its course. Monday I have ct scan of my ribs, lungs and liver, and an MRI of my lumbar spine, right hip and tailbone. After a hands on physical exam, he is quite certain I did not break a rib, that is most likely cancer/tumor involvement to the lining of the lung or the connective tissue of the ribs. He believes tumor is hitting a nerve somewhere on or near the spine, causing leg to go out and falling, weakness in my legs.
I have scans Monday and my radiology oncologist will pull the scans and my onco,rads onco, and pain management doctor will go poo her them at the tumor board Tues am. Then will call me. His plan is to gamma knife if it is tumor/nerve, get my pain meds under control.
We are hoping the scans are better than the symptoms and blood work. The fentanyl patches are poo not effective in managing the pain for about 36-40 hours, then the pain, followed by chills, sweats and cramping.... this is withdrawls setting in. Hence, trying to get the pain managed b4 hospice. I feel like the roller coaster has begun again, except this time I feel like we have exhausted all medical options, and I am sleeping more than being awake.
I still have hope at least for more time. His prognosis is 8-12 weeks still mobile w/cane, and 6months -12 being alive. Providing I don't end up w/pneumonia or clots. As he says, this could change w/the scans and I have not.followed the normal course up to now....
Hugs to all,
Carol
Comments
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sending prayers
Sending prayers that doctors get your pain under control soon, gentle hugs {{{{hug}}}}
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HUGS
HUGS0 -
Hospice
Carol, I am praying for you, Hugs! Mary
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Huge hugmjjones453 said:Hospice
Carol, I am praying for you, Hugs! Mary
I read your words and I believe them. But then I think of your spirit and it's hard to believe the words.
Huge hugs,
Victoria
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Inspiration
Carol, your tenacity is simply inspirational. I can't imagine all the emotions you must be feeling right now let alone the physical pain you are enduring. I hope that the doctors again are underestimating you and that they get your pain under control as soon as possible. Sending you hugs and strength.
Clementine
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CarolJean 0609 said:Keep fighting!
My dear friend, you have proved them wrong before and you can prove them wrong again. Put on those boxing gloves. You continue to be in my thoughts and prayers daily.
xoxo,
Jean
I just don't see you giving up! Love you for that. Prayers are with you and definitely thoughts. Hugs, Linda
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Carollintx said:Carol
I just don't see you giving up! Love you for that. Prayers are with you and definitely thoughts. Hugs, Linda
You are never far from my thoughts. I also believe that your tenacity has been your best asset in this fight. You have proven the doctors wrong before and I know that you can do it again.. I do hope that the gamma knife will give you some relief and you can get a handle on the pain. Love Surf
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Best Best wishes for you~ you
Best Best wishes for you~ you are in my heart forever~
Lori
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I don't consider hospice giving up1surfermom said:Carol
You are never far from my thoughts. I also believe that your tenacity has been your best asset in this fight. You have proven the doctors wrong before and I know that you can do it again.. I do hope that the gamma knife will give you some relief and you can get a handle on the pain. Love Surf
Carol, it has been 18 months since we got together in Sacramento. Seems like yesterday and I think of our meeting often. I'm so sorry you're having such pain and potentially more tumor growth. Have a good long talk with your doc (I'm sure you will if you haven't already) about all the options with hospice. I think so many folks have the misconception that it means you're giving up and I honestly don't look at it that way. If there is nothing medically that can be done (without killing you) then I so hope you can find pain relief and comfort through hospice and be able to find peace in your time remaining.
Sending hugs and prayers,
Suzanne
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you all are amazing and I thank you.tufi000 said:Ninja
I know you will do whatever there is to do. I remain in awe of you and wish and hope for what you want in the most comfort possible.
Sherry
Sherry, you just come across as a bundle of fun and I think you , like Victoria would have been a hoot to sit at the beach and enjoy the refreshments and the beach, and we could have gotten Suzanne and quite a few others, like Vick Sam and all who wanted to join in....
Seriously, like Suzanne said, this is not giving up. I don't think k giving up was ever built into my DNA. However, when you are terminal, there will come a time when the options have been exhausted and you have to make a decision . There is still one chemo I could try, it would not extend my time and I would suffer the normal se of the treatments with the know outcome being possibly help with the pain. For me, this is not an option to be nauseated, I have been on too much chemo to survive which the nausea and side effects were tolerable, but that is easy to saywhen it was an option to "extend". Some of the side effects, blood clots, nausea, interference with beginning stage Parkinsons, body swelling due to toxicity of Tamoxifen, hives down the throat and all over my body, a week stay following rads to tailbone all the standard, ie.nausea, fatigue, hairloss, bloating, etc.
My second option is whole body radiation. Don't like the risks, walk in the hospital and a 50/50 chance that are I walk out. If the red cells don't come back, along with depleted white cells, even rad onco says the risks are high. So my choice is to manage the pain or get it under control, choose my hospice and continue living.
Hospice does not mean I am dying tomorrow, just that I am no longer receiving cancer treatment and based on experience, the passing is normally within 6 months. But like he says, he is not God and has no crystal ball. He is going off what he has seen with patients in similar situation. Insurance doesn't like paying the higher paid physicians when they are no longer administering treatment for the cancer.
Thanks to changing doctors 2.5 yrs ago, my life was extended as my markers were on rapid rise and the cancer was aggressive and I was not ready . Now I know I am out of options and I am working on acceptance
Hugs, Thames and prayers to all of you,
Carol
.
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Beach? Hmmmmmmcamul said:you all are amazing and I thank you.
Sherry, you just come across as a bundle of fun and I think you , like Victoria would have been a hoot to sit at the beach and enjoy the refreshments and the beach, and we could have gotten Suzanne and quite a few others, like Vick Sam and all who wanted to join in....
Seriously, like Suzanne said, this is not giving up. I don't think k giving up was ever built into my DNA. However, when you are terminal, there will come a time when the options have been exhausted and you have to make a decision . There is still one chemo I could try, it would not extend my time and I would suffer the normal se of the treatments with the know outcome being possibly help with the pain. For me, this is not an option to be nauseated, I have been on too much chemo to survive which the nausea and side effects were tolerable, but that is easy to saywhen it was an option to "extend". Some of the side effects, blood clots, nausea, interference with beginning stage Parkinsons, body swelling due to toxicity of Tamoxifen, hives down the throat and all over my body, a week stay following rads to tailbone all the standard, ie.nausea, fatigue, hairloss, bloating, etc.
My second option is whole body radiation. Don't like the risks, walk in the hospital and a 50/50 chance that are I walk out. If the red cells don't come back, along with depleted white cells, even rad onco says the risks are high. So my choice is to manage the pain or get it under control, choose my hospice and continue living.
Hospice does not mean I am dying tomorrow, just that I am no longer receiving cancer treatment and based on experience, the passing is normally within 6 months. But like he says, he is not God and has no crystal ball. He is going off what he has seen with patients in similar situation. Insurance doesn't like paying the higher paid physicians when they are no longer administering treatment for the cancer.
Thanks to changing doctors 2.5 yrs ago, my life was extended as my markers were on rapid rise and the cancer was aggressive and I was not ready . Now I know I am out of options and I am working on acceptance
Hugs, Thames and prayers to all of you,
Carol
.
It is just like you to give ME the pump up we are trying to give YOU. Ohhhh Carol, do I wish for your attitude when it is my turn or is there something I can really do for you.
Yeah, we could have torn up a beach or two I am sure. When I ponder which super power I would most want, it is definitely teleportation. Then the hugs would be real. The beat goes on.
Sherry
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Did somebody say beach???????camul said:you all are amazing and I thank you.
Sherry, you just come across as a bundle of fun and I think you , like Victoria would have been a hoot to sit at the beach and enjoy the refreshments and the beach, and we could have gotten Suzanne and quite a few others, like Vick Sam and all who wanted to join in....
Seriously, like Suzanne said, this is not giving up. I don't think k giving up was ever built into my DNA. However, when you are terminal, there will come a time when the options have been exhausted and you have to make a decision . There is still one chemo I could try, it would not extend my time and I would suffer the normal se of the treatments with the know outcome being possibly help with the pain. For me, this is not an option to be nauseated, I have been on too much chemo to survive which the nausea and side effects were tolerable, but that is easy to saywhen it was an option to "extend". Some of the side effects, blood clots, nausea, interference with beginning stage Parkinsons, body swelling due to toxicity of Tamoxifen, hives down the throat and all over my body, a week stay following rads to tailbone all the standard, ie.nausea, fatigue, hairloss, bloating, etc.
My second option is whole body radiation. Don't like the risks, walk in the hospital and a 50/50 chance that are I walk out. If the red cells don't come back, along with depleted white cells, even rad onco says the risks are high. So my choice is to manage the pain or get it under control, choose my hospice and continue living.
Hospice does not mean I am dying tomorrow, just that I am no longer receiving cancer treatment and based on experience, the passing is normally within 6 months. But like he says, he is not God and has no crystal ball. He is going off what he has seen with patients in similar situation. Insurance doesn't like paying the higher paid physicians when they are no longer administering treatment for the cancer.
Thanks to changing doctors 2.5 yrs ago, my life was extended as my markers were on rapid rise and the cancer was aggressive and I was not ready . Now I know I am out of options and I am working on acceptance
Hugs, Thames and prayers to all of you,
Carol
.
I am there. What a blast we would all have. Love you Carol!
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Peace Be With You Camul
There is nothing wrong with giving up, just remember Heaven is waiting for you and there you will be healed and everyone of your loved ones that went before you and all the friends you made here on this forum that have come and gone, they are there waiting for you with open arms. And you can sure bet there are beaches, anything your heart wants. My prayers are with you during this time. It was a pleasure to know you through these forums. It's okay to let go, you've been through enough and if it's your time to go then go Camul and soar like an eagle.
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Thinking of you today~♥
Carol~ praying and hoping for pain management, and for more days filled with joy, family, being mobile, and all that your heart desires!
~Melanie
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