I am picky about what doctors I go to. My PCP (primary care physician) understands that and respects my wishes. I check various ratings and see who got good reviews from patients. Most specialists in central Florida have about 10-12 reviews: 10 five-star and 1 one-star is normal for specialists. When a specialist recommended a radiology oncologist with no five-star and the one-star said "This is a great doctor - if you want to die." Well, I figured we wouldn't be a good match. My PCP honored that and told me to find one I would be comfortable with. That was my mission today.
Today's success was scheduling an appointment with the hematology oncologist. Her photo looks like a high school cheerleader - pretty, young and blonde with long hair. But she had great reviews from both my PCP and patients. Unfortunately, her first appointment is September 18th. I'd really like to get this show on the road.
Since the hepatologist wants Y-90 treatment, I need to find a radiology oncologist who does that procedure and takes my insurance. I called 7 oncology clinics - most have multiple oncologists. Not one does Y-90. I called two hospitals to see if they had Y-90 trained physicians. I hope they call me back tomorrow. I encourage myself that after I get my team aligned, that I shouldn't have to do any more physician shopping. I am looking forward to that day.
If curious, here's a 2 minute video of Y-90 treatment:
https://www.youtube.com/watch?v=8sA3sSjOoD0
Today was a good day. The doctor started me on an anti-acid. I was a little worried about taking it since I don't have digestive discomfort. He felt I needed it so the acid in my digestive track won't harm the esophogal varices and cause them to rupture with the chance of bleeding to death since I have low platelets. I will get another surgery on my esophogas when the oncologist feels it is safe.
I hung around the house, took a long nap, watched movies,did no housework, and am still in the jammies I woke up wearing this morning and will sleep in tonight. Tomorrow is a work day, so I should be rested. I'm grateful I've learned to be gentle with myself and listen to what my body needs; yet still push myself for important things: work and going to Friday cancer support group and earring making.
Wednesday 28 August 2019
Tuesday 27 August 2019
Feeling Stress Melt
I had an appointment with my primary physician today (8-27). My sister went with
me for note taking. She felt I had made a good choice of doctor. He took
time to ask her about questions or concerns she may have. If we lived in a quantum field, he could be my PCP, gastro, hepatologist, radiology oncologist, hematologist-oncologist and I'd have a young man who seems very competent.
I told him I'd read the FDA clinical trials and it said Y-90 is a "treatment, not a cure." I asked him to explain that. I love his honesty. He said in my situation, treatment is pallative care to help me live longer and more comfortably before I go. I thought about teasing him and asking if 'go' meant to go on a cruise. But realize he was struggling to talk about my future death. It feels like I am the only one who is comfortable or accepting of my human mortality. I don't understand the culture's distaste for embracing all of life as normal and natural and to be embraced as part of life's adventure. Maybe it is easier for me because at age 5, a neighbor boy and I were first on the scene when a train hit a car killing 3 (dismembering 2) and leaving one child to survive. My surprise wasn't the scene but that my dad who could fix everything, couldn't fix people in pieces. At 12, I came home from Sunday school to observe my father die. I learned passing is just a normal part of life's cycle. I am grateful for those old lessons that help me view my own future death with peace and acceptance.
He said I don't have to try to figure it all out. Just talk to him and he'll figure out the next step, the next doctor, the next tests and where I need to go. That was such a load off my shoulders. I feel truly supported. I suggested a radiology oncologist who had wonderful reviews; he was familiar with them and said they are the people he would recommend as he'd worked with him before, met him and felt we would be a good match.
I wrote my children last Wednesday. My oldest son e-mailed me tonight with affirming words, his own confusion on how to repair the breech or if he has the time and emotional stamina to do so. Even that was accepted with compassion and peace. If it happens here, that is good. If it doesn't happen here, it will happen in eternity. I've never faced being a father to five, being a high level executive, being active in church, having many obligations. I can't judge him because I've never walked a mile in his shoes. I know he's doing the best he can to keep all the balls in the air.
I find myself getting tired easier and being more quiet at work and not as chatty with customers by early afternoon. I'm not ready to quit working yet. I find I have to eat on time or I get deeply weak. Doc felt the night sweats are hormonal. I wondered if maybe it's from eating animal protein that is loaded with hormones? He said I may be making more stomach acid - which I wondered later might be why I crave meat - digestion of meat requires the acid to start breaking down. Thus, it seems stopping animal protein would be a good way to see if that stops the side effects. I'm trying to figure out what to use for a band around my midriff to help support the weight of the tumor. The elastic bandage crawls up; the back brace work backwards rubs against my breasts. Even with the discomfort of them, it certainly feels more comfortable when I wear something. Maybe a call to a medical supply store.
My sister has been God's hands extended. I know they are busy at their business; but she always makes time to listen, talk, go to appointments, take me places when I'm tired. I am so very blessed to have her in my life.
God has been so faithful through this. I feel very close to His love and compassion. Psalms 27 sustains me and I meditate on in throughout the day and in the night watches.
I told him I'd read the FDA clinical trials and it said Y-90 is a "treatment, not a cure." I asked him to explain that. I love his honesty. He said in my situation, treatment is pallative care to help me live longer and more comfortably before I go. I thought about teasing him and asking if 'go' meant to go on a cruise. But realize he was struggling to talk about my future death. It feels like I am the only one who is comfortable or accepting of my human mortality. I don't understand the culture's distaste for embracing all of life as normal and natural and to be embraced as part of life's adventure. Maybe it is easier for me because at age 5, a neighbor boy and I were first on the scene when a train hit a car killing 3 (dismembering 2) and leaving one child to survive. My surprise wasn't the scene but that my dad who could fix everything, couldn't fix people in pieces. At 12, I came home from Sunday school to observe my father die. I learned passing is just a normal part of life's cycle. I am grateful for those old lessons that help me view my own future death with peace and acceptance.
He said I don't have to try to figure it all out. Just talk to him and he'll figure out the next step, the next doctor, the next tests and where I need to go. That was such a load off my shoulders. I feel truly supported. I suggested a radiology oncologist who had wonderful reviews; he was familiar with them and said they are the people he would recommend as he'd worked with him before, met him and felt we would be a good match.
I wrote my children last Wednesday. My oldest son e-mailed me tonight with affirming words, his own confusion on how to repair the breech or if he has the time and emotional stamina to do so. Even that was accepted with compassion and peace. If it happens here, that is good. If it doesn't happen here, it will happen in eternity. I've never faced being a father to five, being a high level executive, being active in church, having many obligations. I can't judge him because I've never walked a mile in his shoes. I know he's doing the best he can to keep all the balls in the air.
I find myself getting tired easier and being more quiet at work and not as chatty with customers by early afternoon. I'm not ready to quit working yet. I find I have to eat on time or I get deeply weak. Doc felt the night sweats are hormonal. I wondered if maybe it's from eating animal protein that is loaded with hormones? He said I may be making more stomach acid - which I wondered later might be why I crave meat - digestion of meat requires the acid to start breaking down. Thus, it seems stopping animal protein would be a good way to see if that stops the side effects. I'm trying to figure out what to use for a band around my midriff to help support the weight of the tumor. The elastic bandage crawls up; the back brace work backwards rubs against my breasts. Even with the discomfort of them, it certainly feels more comfortable when I wear something. Maybe a call to a medical supply store.
My sister has been God's hands extended. I know they are busy at their business; but she always makes time to listen, talk, go to appointments, take me places when I'm tired. I am so very blessed to have her in my life.
God has been so faithful through this. I feel very close to His love and compassion. Psalms 27 sustains me and I meditate on in throughout the day and in the night watches.
Psalm 27 Contemporary English Version (CEV)(By David.)A Prayer of Praise
1 You, Lord, are the light that keeps me safe.
I am not afraid of anyone. You protect me, and I have no fears. 2 Brutal people [diseases] may attack and try to kill me, but they will stumble. Fierce enemies [medication side-effects] may attack, but they will fall. 3 Armies [of medical professionals] may surround me, but I won’t be afraid; war [from fighting this disease] may break out, but I will trust you.
4 I ask only one thing, Lord: Let me live in your house every day of my life
to see how wonderful you are and to pray in your temple.
5 In times of trouble you will protect me.
You will hide me in your tent and keep me safe on top of a mighty rock. [Jesus is my rock]. 6 You will let me defeat all of my enemies. Then I will celebrate as I enter your tent with animal sacrifices and songs of praise.
7 Please listen when I pray. Have pity. Answer my prayer.
8 My heart tells me to pray. I am eager to see your face, 9 so don’t hide from me. I am your servant, and you have helped me. Don’t turn from me in anger. You alone keep me safe. Don’t reject or desert me. 10 Even if my father and mother should desert me, you will take care of me.
11 Teach me to follow, Lord, and lead me on the right path because of my enemies.
12 Don’t let them do to me what they want. People tell lies about me and make terrible threats, 13 but I know I will live to see how kind you are.
14 Trust the Lord! Be brave and strong and trust the Lord.
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