Sister and I went to my radiology oncologist yesterday. I find it interesting how two oncology physicians can be so very different in approaches and personality - yet I like both and feel they are a good addition to my team. What my sister liked enough to count is six times, he asked "Do you have any questions?" then waited until one or the other had questions and answered them in terms we could understand. Both doctors managed their time well; I felt supported - not rushed; yet they were very efficient. With the medical field becoming more competitive and holistic, it has required physicians to develop better customer service skills. I liked one of his comments, "I won't do a physical exam. You've been poked and prodded enough and I've read all your medical reports from others who poked."
He explained the Y-90 treatment I hope to have. He drew a picture of the liver, where my tumor is (it is not where I thought), and the two arteries that feed the liver. The concern is if they radiate the left lobe where the tumor is and that causes the full lobe to decrease functioning, the right lobe may not be able to keep up with it's current, low level of functioning and I would go from compensated to decompensated cirrhosis. They will know more after the "dress rehearsal" when doctor #5 who is a Vascular and Interventional Radiologist. I will meet him the 19th and he will determine if I'm a candidate for the rehearsal - which will determine if I get Y-90. Then it takes 2-4 weeks for insurance to approve it, then they schedule it. I said since my Alpha-fetoprotein score is rising, could we use another approach in the meantime, since it may be late October or November before the treatment is done. He said my oncologist can prescribe oral chemo pills and gave the names of the two he may use. Homework for me - to see if I have a preference.
I finally found a way to describe how my liver feels when I massage it - it covers about 2/3 of the area between my front ribs - the ^ area where your tummy feels full after Thanksgiving dinner. It feels like burned meat loaf: about that bumpy texture and firmness.
When we left the hospital, I forgot my notebook. My sweet sister ran back to get it. Then I felt guilty because she has some arthritis and I know walking isn't as comfortable for her. Okay, I'm the spoiled little sister and sometimes forget to get out of that mode.
Then we decided to do something fun. We went to a big, downtown health-food grocery store. We wondered and wandered around. I'd wanted super-healthy buns for sandwiches. I found none that met my criteria. But we discovered their amazing olive bar. I got some garlic stuffed green olives, some black and green olives marinated in spices and feta cheese, and goat-cheese stuffed giant green olives. They were all good but the goat-cheese stuffed ones were amazing! I'm nibbling on olives for breakfast as I type.
Sister and I discussed quality of life. It made me realize again why I need to complete a "Five Wishes". If I understood sister correctly, quality of life doesn't become an issue until a person can't get out of bed and is in agonizing pain that medications don't help. Although my quality of life isn't what I feel is good quality, it is still doable. I have enough money in savings that if I had to quit work, I could live several years without going for government assistant at about the same quality of life I have now. I hope I can work for a long time. If I had to hire house cleaning, then it would only be a couple of years or moving into a cheaper apartment - which most don't feel safe. Or there is the government subsidized housing that is a challenge to get in; I hope that will be easier for citizens as the new regulations not allowing illegal aliens into government subsidized housing. Currently there is about a 3 year waiting list and you have to go to each apartment and reapply every calendar month.
Quality of life to me means that I can do self-care - bath myself, feed myself, have enough energy to go for a short walk in nature once a week (or when I have a good day and good weather), being able to have a minimal social life, possibly have enough energy to occasionally enjoy a hobby. Well, that's about my current quality of life: except I clean my own house and still work three days a week. But I am content with that. If it got much less functional or if it was going permanently downhill, then I'd be tempted to quit medication and let nature take her course. Since no medicine has 100% guarantee of a cure, and any medication I take is palliative, I do not feel stopping medication is sinful or suicide. I trust God, not physicians. Currently I have chosen to use medicine even with my trust in God. I don't know why I am not trusting natural cures like I used last time I was diagnosed with cancer. But the thought just doesn't sooth me like it did 6 years ago; plus, I often don't have the energy to dedicate to natural cures. Natural can be as demanding, or more demanding then allopathic treatments. Natural you do to yourself for yourself; allopathic the doctor does to you.
After those gloomy observations, I've had two good days in a row. Hooray! Where I worked and still had energy to do more. My house got cleaned, I only needed one nap during those two days. It felt good to feel alive with a little energy to spare. Still too hot to go for a walk.
Today I hope to get my car washed, bring the wiper blades inside and wash with hot water and soap to help remove the smog. Orlando does not seem to have dirty air, so it surprises me how quickly my windshield gets full of slime that won't wash off with my window squirter. I am doing 3 loads of laundry and making chicken vegetable and noodle soup for supper - my sister and her husband are invited if it will work out with their day.
ENERGY SAVING TIP: I purchased two washer balls and six 3" wool dryer balls. I no longer have to measure soap, softener or pull out dryer sheets. About once a month I will use dryer sheets - or maybe that was because barometric changes during the hurricane threat. It is healthy because it's chemical free, my laundry looks great and smells neutral (no perfume or body smell), and saves me a little time and energy. If I wanted scent, I could add a few drops of essential oils to my dryer balls. The two kinds of balls and essential oils can be purchased from Amazon if you can't get them locally. I think all of those were about $25 and last for 1,000+ loads of laundry for the economical laundress.
PROCESS:
7/17 - Family doctor said the tests are back and made appointment with Gastro
7/18 - Diagnosed with liver cancer by Gastro
8/15 - Treatment recommended by Hepatologist
8/27 - Family doctor checked how he can help move the process along
9/10 - Treatment explained by radiology oncologist
Current Place on Process
9/13 - Family doctor to check on process
9/19 - Appointment with vascular oncologist
9/20 - Appointment with oncologist's RN Physician's Assistant
10/3 - Appointment with oncologist
?/?? - If Y-90 is acceptable to all 3 oncologists, it will be submitted to my insurance and it takes 2-4 weeks for approval.
?/?? - Appointment with vascular oncologist for rehearsal to see if Y-90 is best (see above)
?/?? - Y-90 treatment scheduled if it's a viable option
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