Since I went to the ER at UVA, on Tues. Dec. 11, with the IV fluids, I was given there, I have felt so much better, thank God. It took the edge off the weakness, and aches, and body pains. It did not affect the diarrhea, and the pain that goes with that, but I am so much stronger since that night.
Sadly, I never got the remaining antibiotics needed for the pneumonia, not on Wed. after receiving a call from the office of the Oncologist, the office of ER, nor my PCP’s office. Turns out, there was a truck delivery and mix up, but nobody told me, so I went there to pick up the meds and was met with excuses. Excuses are good when you are so sick and weak and take your last bit of energy to go to the pharmacy to pick up the meds that are going to make you stop feeling the chest and back pain, and the excessive cough that lingers all day and night.
Thursday, I get an 8 am call from the Oncologists PA, telling me I don’t need to bother coming in for her to sign my insurance paper that will help me get my benefits, she refuses to sign. I tell her about the antibodies not being at the pharmacy, and she tells me, “well, maybe you don’t need them now”. Here we go again with mixed messages. She also said the Oncologists is considering reducing or terminating my chemo infusions. What?, What does that mean?
When I go back to see her on Dec. 24th, I will be seeing her PA, she would not be there, and then I go on Dec 26th for the third infusion, but she won’t be there then either. I suppose reducing the amount will keep me from dying, and that takes that off the table, but that also means if I need the maximum amount to begin with, how is it suddenly effective to reduce or stop the chemo? I am fed up with the way they go back and forth when it suits them, and never really feeling I need to be a part of the conversation, only the recipient of what decisions are made on my life, and my health and my behalf.
I am stronger today, more lucid, and I am preparing myself for a battle against being used and in a sense abused by the medical community. I wanted to get my affairs in order in case there was less time than I keep being told I have. I wanted to be proactive, and have peace of mind as I continue through, but the Oncologist is not onboard of that being a next step. Less chemo may be less harsh on my system, but wouldn’t that have been a consideration before the chemo began. If you could do a lighter dosage, I would think you would not just decide to give the most aggressive dosage if the option was feasible. I think the way they decide and second guess, and redress my life, has become like a crap shoot and I will not be conducive to it any longer.
Friday, I got a call from my PCP, who still insists I need the antibiotics and re called it to the CVS, although it was not there last night, she urges me to take the full three day supply rather than the two day supply that was initially administered. I got the one that was there, last night, which was only two pills which would have been the remainder of the initial prescription, after the first dosage was administered before I left the ER, Tue. Everybody, is working on their own system, and a human life is the hostage. I find this to be the saddest community because medicine is vital, and not anyone can control how it operates. If I were able to fix what they are doing to me, it would be different, but every patients’ life is at the mercy of those who seem to care the least.
I have to get control of what is happening, or they are going to “accidentally” cause my death, even though they are offended when you speak of life expectancy, and how chemo is killing me rather than the cancer. I stay in prayer, because I know my Redeemer Lives, and they want to be the giver, keeper, and controller, of my life, but don’t like it when I bring that to their attention. God is in Control, but I have grown so tired of people saying things like that, as if there is nothing else to say, so platitudes are supposed to soothe, ..well they don’t anymore. Don’t tell me what God’s got for me, or what God’s plans for me are, as if He is telling you rather than me, trust me, He is not. God speaks to me all day, everyday, everyday and all through the night, and I converse with Him, I have comfort and peace and knowledge and understanding of how He is leading me.
When my time comes, and my day is at end, I will walk into the loving arms of my Savior, and be at rest. I know He is directing me to be ready, use this time to get my house in order, and spend this time with Him, not be running thoughts of what others have to do because I could not get my business handled. I pray the doctors will stop holding me back so I can use all my resolve to fight chemo, rather than fight them and bill collectors, and fight to keep a roof over my head, because of lack of finances, because that is what is happening when they tell me I have plenty of time because I’m young, and the insurance document won’t get signed because she won’t allow me to do what I know must be done to take away all the anxiety and upset. Twelve months of chemo that take away all appetite and taste, is a no brainer, am I supposed to go to the ER every few weeks for IV, just because she can’t face what I already know?
Till next posting. Merry Christmas, and Be Love and Be Compassionate to Others.