I got very very depressed watching the high numbers of people in NY dying every day and had to step off. I thought all of us would die in NY. Self-quarantined for three weeks. Although we (NY) are doing better, we still cannot go in stores without a mask, can't walk around in my own building without mask on, still hard to get meat, blah, blah.
Anyway, I had just started the third injection for bones (xceva?) and then the pandemic happened in NY. I had also started had my second visit with my pain specialist. She was giving me 90 percocets (10 mg.) to take 3x a day with gabapentin (300 mgs). She also casually mentioned to me that it looked like my onco thought my back pain had nothing to do with my cancer and that it was just my getting older (I am 60) and/or arthritis. I said I did not care all I knew was that I could not walk without the lower back pain. I had been having for about 3 months severe back pain in which I could not make it down a 1/4 of a block with my lower back burning and I would be in tears. Since I do not drive and have no support system close by, it was getting so hard to even walk three blocks. The pain was unbearable. I kept taking more and more of the 800 mg. of ibuprofen. My onco kept dismissing it until I told her I no longer leave my house bc of this which is when she referred me to pain specialist.
Well , the pain specialist (God bless her soul) prescribed me the percocet and gabapentin and then poof she was gone. They took everybody they could from the cancer center and sent them over to the center's affiliated hospital Maimonides. My onco's PA then took over writing the scripts as it was not known when they would be back. The only patients the cancer center were taking with patients getting chemo. The rest of us were out of luck but it made sense to me. They had to make 1/2 the cancer center into a makeshift hospital and take those patients who did NOT have the virus and move them into the center.
Well, at my request, I asked for a CT scan and an ultrasound before resuming my injections last week. My onco said she did not think I needed it but I said I would like to make sure the cancer had not spread since my last CT scan was end of January. So I did that a week before I was meeting with my onco again and resuming my injections.
Had my meeting with her on Thursday First time seeing her in three months. She proceeds to then tell me (OUT OF THE BLUE) that a radiologist doctor would be calling me, asking me questions and that I would need to have radiation targeted at my lower spine five days a week for 4 to 8 weeks. I was so caught off guard that it did not register. I had seen my CT scan report on the portal and its like Greek to me. I kept seeing stable so that is good. But then this once sentence caught my eye "However, there is a new 1.2 cm lytic lesion with cortical disruption in the left pedicle of T12." I have no idea what that means but it said NEW.
I did not even get to ask my onco when she said somebody would calling me and asking me questions over the phone and that they would want to start me on targeted radiation to the spine FIVE days a week for four to 6 weeks. WTH.
I was so dumbfounded that I could not even think to ask questions.
I came home and panicked. More because I live alone and I do NOT want to be spending my whole summer doing this and I don't get it. A lytic lesion is NOT a tumor from what I read. Using the 3 percs a day and gabapentin made the difference. I feel normal with no pain and was planning on socializing again and then the pandemic hit NY and that was that.
I have already decided when that person calls (She said within a week or so (Really, no day and time) and was not sure who but that is what they wanted to do.) I googled and read Maimonides Cancer Center lost money (as most places in NY did) and now I am thinking they need to get more cash. Since I am on dual coverage of medicare and medicaid, it would not cost me a penny but give them alot of money.
I was terrified until I remembered this is MY Life and MY Decision. I am not doing it. I have the best quality of life I have had in a long time and I will be damned if they think I am putting myself through this. Apparently, I think its like another hole in my T12 (which I think is at the bottom of my spine). I got the impression that my onco was had no part in this decision making.
I am NOT doing it so when they call, I am telling them that. No. So now just in case, I will have to find another cancer center bc I think they will try to play games and say well we will not continue to give you the opiate (they try to be an opiate free place and pride themselves on it.) I think they see me as a "cash cow" and to get some money back into cancer center.
I am stage iv...It is not going to make my cancer go away. So I am just wondering if anybody understands that sentence at all in the CT scan report and why would they think to do this.
It doesn't matter if they told me I would only have six months then. The answer would still be NO. For the first time, I am not in pain and having a semi-life (until we can stop wearing masks and gloves in Brooklyn) but other than that I see no reason why I should agree to do. I am not going to agree. I have no support and feel fine now so I want to leave well enough alone.
Anybody on here more well-versed than me might explain why. I think its just for the money bc they lost so money as the cancer center was basically closed. I am trying to find another place (although I liked Maimonides) but if they tell me I have to or they will cut out the meds, then I am leaving there.
Is it me or what? As a stage iv, if I am having a decent quality of life finally, why fix something that is not broken.
1.31.20 CT scan w/contrast of my lumbar spine due to my back pain. Rad. report from scan. Need somebody to look at last paragraph.
