It had been a challenging few days. I have felt lost in the healthcare system. My AFP test started in July at 1,800. By August it was 8,500 and the latest was 10,500. The score is suppose to stay the same or go lower as treatment is working. Increasing means the cancer acting more aggressive. Yet, the first available appointment with the Advent Health oncology doctor was made August 20th for a September 18th appointment - they assured me that was the first available appointment. After meeting her, I would have to get an appointment to see the radiology oncologist and then be scheduled for the Y-90 outpatient surgery. It felt things were going too slow.
While at cancer group meeting, a lady who has battled cancer for five years took me under her wing. She fast walked me to Orlando Hospital Cancer center and since the staff knew her and liked her, she got me in to see the top liver (gastro interologist) oncologist in their line-up - and got the appointment for 4 working days (which were during the hurricane kerfluffle) and Labor Day weekend. My sister went with me and we both thought he was wonderful and trustworthy. I let him know that I am looking for quality of life rather than longevity of life. He said that is his philosophy, too. That if I get sick on one med or treatment, we'll try something else. This is an easy decision to make at my age with an inoperable cancer. If I had young children or a partner, it might be a more difficult choice where I would choose a year of pain and discomfort for the hope of a few months longer life. I felt quality over quantity was best for me way before I knew it was inoperable and still feel the same.
The oncologist answered my questions, answered one my sister had and then he sent me for lab tests. He made me promise if I didn't have an appointment with a radiology oncologist to discuss Y-90 by Tuesday to call him and he would assure I got a quick appointment; and if not, then would start me on some oral medication that could hopefully halt the growth of the tumor. Later in the afternoon, the radiology oncologist's office called me and made an appointment for less then a week away.
I love the cancer center. After entering the front doors and going through the metal detector/security; the first door to the right is the cancer center. It helps cancer people be close to parking, separated from general sick people so only a few people wear masks. There was big waiting rooms with coffee, crackers for nausea, comfy chairs and sofas, televisions, magazines, etc. We went to another floor in the cancer center for the blood test; again a comfortable waiting room and the lab and waiting room was only for cancer patients and their caregiver. The separate area gave me a sense of security, proactive for health, and gentleness so a cancer patient doesn't have to walk 10-20 minutes to get to the various areas of the main hospital. It's not as big of a facility as Advent Health, but I liked it. It hasn't had to change names because of illegal financial management like Advent Health who has been Florida Hospitals.
August 31, I started having dark bruising on my feet and between my toes on my left feet. The Saturday before, I'd fell at the theatre thinking my bifocals line were not a step. oops. I had bruised knees but no pain or swelling. My first concern was bleeding from variaces, bleeding from where the cancer has grown into my portal vein or the cancer had metastasized into the blood. When my birthday party at my sister's was complete; she took me to Urgent Care where the nurse practitioner was rude - even my sister who seldom says negative things about people - said she had trouble not mouthing back at the lady who refused to even look at me and sent me to the ER. The young lady ER doctor was great. Her concern was a blood clot and assured me my concerns were unfounded. She had a Ultrasound ran and found no clots. Said the bruising and swelling may get worse before it gets better and the bruising coloring may change to rainbow colors and all that is normal. With my fears calmed, my purse $120 co-pay lighter, it was midnight.
Since the hospital I went to for ER, was ran by Orlando Hospitals; all my blood tests and the discharge paperwork was uploaded to the internet within a few minutes. Tuesday morning, my family doctor's nurse called to find out what happened, if I was okay, if I needed to make an appointment with the family doctor. I thanked them for their care; and let them know I was managing just fine. I can go into that web page and get results of almost all tests as soon as they are posted - so I probably know before the MD who prescribed the tests is aware of the results - since I check it frequently after tests. I love this up-to-the-minute way to exchange information.
Last night there was a knock at my door and UPS left a thick envelope. It was a book and information paperwork from my oncologist to tell me about the hospital, him, cancer, etc. I realize with privatized insurance, everybody who works for the hospital must offer great customer service or another hospital will be chosen. I realize insurance pays for these perks - but I think it helps a patient feel supported during sickness. The cancer center even has a nurse practitioner whose job is to counsel and test people who wonder if their cancer may be genetic; she guides them through that process and then helps the family be tested. I know mine isn't, so don't need that service; but feel the center has found ways to help patients cope.
This cancer center is where I attend the support group and the earring making time. It's in the same building, but has a separate entrance.
Back to the liver oncologist: He said since I'm inoperable at this time that he would gather all my information and present my case to the weekly tumor board. It is a group of 10-12 MDs who would look at the information and maybe see things differently and then come up with the best individual plan for me. Maybe all tumors are reviewed by the tumor board; but it is a good feeling that more than one brainy doctor is going to analyze the best path forward.
He also got me an appointment on Tuesday to see the radiology
oncologist who is trained to do Y-90 treatment. That is such a relief
because I'd called the satellite hospitals of both Advernt Health and could find nobody who had been trained in that new
procedure.
Sister has been a rock through all of this. She's gone to my appointments; encouraged me; allowed me to encourage her, etc. I'm so blessed to have her. When we went to the oncologist (left her house at 7am); she got done at my appointment, took lunch to her husband, then spent the afternoon while he had a medical procedure at another Orlando Hospital facility.
I know doctors won't give prognosis. The oncologist said my Child-Pugh score was 7; sister and I call it the ChildSpew Score; that score means 80% of people live 12 months or longer. My MELD score was 12 and 6% died within 1 year. These tests are used for determining who gets available livers for transplants. I'm not looking for a transplants. Those tests do not include cancer as a criteria on computing the score. They would include cirrhosis, fatty liver, hematachromatosis and cancer with no definition of what disease is causing the score. The BCLB staging shows Stage C - advanced since it has moved into the blood vessels and the size of the tumor; it states without treatment that there is 3-6 months survival; with treatment 6-12 months. CLIP staging score of liver cancer says I have prognosis of 32 months. And that is that; it is interesting to see the variety of potential outcomes. I trust God, I am okay with whatever the prognosis is.
Emotionally I am feeling better because it feels like I have a supportive team helping me with this disease. God's on my side - never any doubt there throughout this whole thing. I am doing what I can do with the resources I have - the most challenging resource is energy that has waned through the last 14 years as my liver has lost function. I am blessed I have no encephology; at least yet. I am eating healthy, using essential oils, healing bowls, drinking lots of water, assure I am eliminating regularly, and taking more medicine then I am comfortable with - need to discuss that with my primary physician. I hope to make an appointment with a nutritionist (not dietition) who specializes in cancer nutrition.
I am getting a handle on handling the discomfort and occasional pain. I am learning what and when I eat can make a big difference with coping with that. Watermelon is wonderful for liver cancer - it has a natural diuretic effect and is great to keep my bowels going twice a day to keep detoxed; adjusting to watermelon red stools did take some adjustment. It brings back memories of when a son was just potty trained and he crawled into a tall cupboard and ate a whole bag of cherry chips - then cried the next day when he saw red poop. It totally frightened me until he confessed what he'd done. I have some beautiful memories to cherish. Of all my jobs I loved being a stay-at-home Mom and wife the most. But that was all I ever wanted to do growing up - to have ten children. Two sons was very good and I loved watching them grow and still enjoy the glimpses I get of them as men. They are such a blessing to me.
