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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Wednesday, 21 August 2019
Oscar's Debut
A strange conversation with my gastroenterologist:
Doc: (sitting on exam stool across from me speaking in his normal, gentle voice) "You have liver cancer."
Me: (pause) "Okay."
Doc: (standing in front of his stool speaking louder) "Ms. Kaba, You have liver cancer.
Me: "Yes, I heard you."
Doc (walking across room and putting his face 6" from mine, loudly said.) "You have liver cancer."
Me: "Yes. I did not know that yesterday. I know that now. The only thing that has changed is now I know."
Doc: (looks exasperated and walked back to his exam stool and sits) .... he explains the next steps.
I named the cancerous growth "Oscar the Grouch". The team of doctor's job is to encourage Oscar to go to the garbage can and out of me.
This is my diary. I have not published it because I have not told my sons until I had more information. I plan to do that tonight.
August 4: Two weeks ago (July 17) I was diagnosed with liver cancer. I don't feel sick or bad, so the only thing different is now I know. I see the hepatologist in two weeks (Aug 15) . I am not looking forward to that as I fear he will be rude and condescending as previous MDs of his race have been to me. Since September 4, 2008, when I discovered I had Grade 4, Stage 4 cirrhosis and cysts in my liver that I would not go on the transplant list nor did I want heroic measures. I still feel the same way.
August 11: By Tuesday, I could feel swelling of the liver that "outlined" my rib cage about 1 inch. It feels hard and bumpy when I rub it. I sleep on my right side, so I need a Tylenol and a small pillow to press against the ouch so I can sleep.
By Thursday, my family doctor said to not get surgery next Wednesday. I am to call the gastro to say my family doctor doesn't want me to have banding of esophageal varices until after I see the hepatologist next Thursday. I call and the gastro's nurse was quite rude about it. I call my family doctor's nurse for clarification because I am referred to two hepatologists, a gastroenterologist and an oncologist - and I'm to make the appointments but my insurance has not received the paperwork to say who they will pay for. Currently, the medical maze is more frustrating then the cancer.
By Friday, I need a Tylenol three times a day to manage the discomfort. In hindsight, I think some of this is because of stress not the disease. The lumpy outline (swollen liver?) is now past my rib cage about 2 inches and I need a big pillow to press against my belly to rest at night. I had a great day. I went to the hospital (where my hepatologist doesn't practice) and attended an orientation, a cancer support group and an earring making class. The Cancer Support Community is fully funded through the late Gilda Radner. They have dozens of things to support cancer patients and caregivers; they even have cancer yoga that teaches positions to help cancer in different areas of the body - no pretzel-bending poses just simple poses. They suggest we make two pair of earrings - one for us and one to donate. Each cancer patient who goes to the hospital can pick a pair of earrings to take home for herself or to give (like a husband to give a wife). I made a pair for my sister and donated the other. They must have 500 different beads to chose from. While I was making earrings, the lady next to me was a caregiver for a lady getting her fourth round of chemo; the patient comes in with her little hat to cover her bald head and a big smile. She said she looks forward to chemo day because she gets to work on her painting while she's sitting in the chemo chair, then make earrings and then go home and be sick from the chemo while cherishing memories of her fun day. Later the art therapist arrived and showed us her progress on her painting of butterflies. Like many, she is sick the next few days, but said painting and creating really helped her through the process. If I understood it correctly, she can keep the painting when it's done or donate it to a fundraiser for the support group.
Saturday my sister, Pat, and I went grocery shopping after sharing berry smoothies I made; she made salmon sandwiches for lunch. I went home and slept for a while then cleaned out my closet to give things to the thrift store. Trying to do those things so Pat will have less to do if/when I pass.
Sunday now and my liver is uncomfortable most of the time and if I yawn or lay on my right side, it is painful even with the Tylenol (pain is 4 on a scale of 1-10). I went to Pat and Marshall's church. I talked to the pastor's wife to see if she knew my hepatologist - she wasn't familiar with him. Advent Health has hundreds of doctors, so it's not surprising. I made an appointment with her pastor/husband for counseling. I said I had two things on my mind: What questions do I ask myself to decide if I want to fight cancer or let nature take it's course; and I would like to be in his church even though I believe differently and need to figure out how to fit in.
I still haven't cried. I haven't had a down day. A lady at church asked me how I felt. I replied, "If I was any happier, God would have to turn me into twins to hold all this joy." That is true. Then I say to myself, what the heck is wrong with me? Don't normal people grieve and kick and scream and cry and carry on when they get a cancer diagnosis? And all I can say is "The only thing different is now I know." A month ago, I had no idea. Maybe it would be different if I felt connected to a partner who would hold me and comfort me while I cried - but I don't think so. I grieved 11 years ago when I discovered cirrhosis and came to accept that either cancer or a bleed from the varices would end me - unless a car wreck or other surprise beat the liver to my demise. I said 11 years ago that I wanted to make it 10 years - and now it's a few weeks short of 11. That's exceeded my expectations and I am content. I've had an adventurous life and I am so full of joy and good memories that outshine the sad times of my life.
It amazes me anybody gets well after a serious diagnosis. I've been to so many doggone appointments that it is hard to find time to rest adequately. I also have to do the legal stuff to prepare if this becomes terminal. I need a US will as my Canada will may be a mess for my executor to figure out. I need to change my recipients for my life insurance policies, etc.
I contacted my boys July 31 to ask when it was convenient to call. Neither responded. Since they are busy with their careers and large families (5 kids each), I understand. Being mostly estranged (maybe 2 conversations a year that they allow me), they are accustomed to not having me in their life. I won't post this until after I see the hepatologist and can give them more accurate information - like prognosis and projected graduation to heaven date or month. Then I will contact them. I love them dearly; but I also know when they have detached that my detaching from expectations and just being pleasantly surprised by any movement is a blessing. If we don't find the skills or strength to reconnect here; I firmly believe in the afterlife. I see their point, in some ways; I use to be a drama queen and that must have been very annoying to live with. I think they would be amazed how I have grown after I realized nothing in life - even myself - is any of my business or even important in the overall scheme of life. The scriptures say, "Looking unto Jesus the author and finisher of our faith; who for the joy that was set before him endured the cross..." (Hebrews 12:2a). That scripture also comforts me about my future death.
I now think of death very similar to giving birth. When my two boys were born, my goal was to be awake to participate and greet them, Another goal was not to scream even when labor hurt. I didn't want to lose my dignity (oh, pride is strong at times). Those are the same goals I have for my future death whether that be soon or decades away. Back then my body pushed out 8 lb 14 ounce boys; but whenever my time on earth is up, I will push out the real me from this "earth suit" that has allowed me to live on this beautiful planet and live in the eternal: "Christ in me the hope of glory" (Col 1:27) and "In Him I live and move and have my being" (Acts 17:28). Those scriptures won't be fleeting glimpses, but authentic, eternal reality.
August 17: It's one month since discovering cancer. It feels there has been a lot of progress but no progress. My boss is being awesome; I am so blessed to be working for this 32 year old, single mother of three who is also battling cancer.
After complaining about the pain and swelling; it is going down and I don't need pain medication. The doctor did give me something a bit stronger in case I need it. I took 1/2 a pill one night and it worked great.
I saw the hepatologist on Thursday. The one my two doctors wanted was Dr. K. This is Dr. C. but he was available to see me quickly and there was 2 month wait for Dr. K. My sister, Pat, went with me - after her spending the morning in outpatients for injuring her hand. I'm blessed to have her in my life. We both liked Dr. C. He was efficient, thorough, knowledgeable, caring, a touch of humor, and great at answering questions and giving information. The radiologist who read the MRI said the cancer was 7cm; he said it was 5.5-6cm but had grown into the portal vein which often causes cancer to metastasize to the lungs. He wanted to assure it has not metastasized, so he ordered two more C/T scans; then got his scheduler to book them for 90 minutes so we'd have time to find the radiology department. The C/T nurse didn't do very well with the IV, and one bruise is about the same size as my cancer. After two unsuccessful sticks, I said since this is 7th Day Advent hospital, would she pray before she made the third try. She smiled and prayed out loud, then I prayed and the needle went right in, worked and left NO bruise. Hallelujah!
On the way out of the liver clinic/transplant clinic, Dr. K. (the specialist my MDs wanted) was standing in the elevator with a co-worker and a patient (guess). I whispered to Pat to observe him. Neither of us said a word, but observed like we were Nancy Drew or Sherlock Holmes. He seemed arrogant, spoke rudely to the other people, even said he wished his vacation had lasted longer as he was sick of sick people. That did not give me much trust in him to guide my medical part of this disease. Pat's opinion was similar. Then I told her he was the doctor my doctors wanted; we both agreed it would be a bad match for me. I wrote my family doctor and asked him to please leave me assigned to Dr. C. I can understand how Dr. K. can be frustrated; as a hepatologist and transplant surgeon, I'm sure he has a very low success rate and sees many patients die. I can understand how even a very compassionate man could have bouts of frustration with his chosen profession. If you don't want patients to die; then become a obstetrician and birth life - don't chose a specialty where the patients who are sent to you have not been helped by various other specialties who couldn't help them before they land on your exam table, in my opinion.
August 16: I went to cancer support. The Advent Health only has group once a month and not much else - where the other hospital (Florida Hospital) has a full schedule of activities to help cancer patients and survivors and caregivers. I was the only person, so had a one-on-one with the counselor. Rather boring for me as she wanted to talk about my history. She was an intern, so I answered her questions openly as she learns her job. Then I made and donated 3 pair of earrings. I was tired and came home for a nap.
Miscellaneous stuff:
I remembered something my MD in Tulsa had me do when my gall stones were causing pain. I bought a large square of unbleached wool felt and a bottle of castor oil. I put the oil thickly on the fabric then put the oily side against my midriff where the pain is. I wrap around myself with two rounds of plastic wrap, tuck the edges under the edges of the wool so the oil doesn't run. Then I wrap a 6" ace bandage around it all and wear an old t-shirt that if it gets stained is no biggie - and put an old towel under my torso while I sleep. I remember back in the 90s that after 3 months, the cloth went from off-white, do dark, muddy brown from the toxins that had been pulled from my body. I started doing that again and my liver started feeling much better and the wool is already turning a pale orange/yellow/tan as it pulls out the toxins. I am grateful to God for helping me remember that old-wives therapy since it's helping.
I am having some nausea. I still have pain near the cancerous spot when I yawn, but not as bad - or maybe I'm just learning to yawn more slowly so the jolt to the cancerous spot isn't as intense. I no longer crave animal protein and am enjoying more vegan foods. That is good for my liver.
Now I'm just waiting to hear back from the hepatologist with results of the C/T, information if the cancer has metastasized, and what stage of cancer I have. Then I will tell the boys and my niece.
Spiritually things are different. The deep bond I've had with God for years now seems more real and precious. Above I mentioned my fear of losing my dignity. I told Pat's pastor. He's been hospitalized 9 times in 9 months. He told me some words of wisdom he learned from a nurse when he mentioned he felt like he'd lost his dignity. She said, "Your dignity comes from God - you can't lose that; your modesty may have been diminished,." Their cancer support may be puny; but their faith-based mandate has been impressive.
Pat seems to be taking my condition very hard. I feel sad about that; but I don't know how to help her come to acceptance. She will have to grieve the potentials of the future in her own way and all I can do is listen and care and be careful to not push buttons that cause her pain as she works through it. It's blessings like that that remind me I am not in control - God is and life is easier if I cooperate instead of rebel.
The big surprise for me was something I noticed while laying in bed resting and thinking about so many wonderful people who have touched my life and made it and more expansive and rich because of their presence. I realized many people I did not take time to tell them of what they did that was meaningful to me. As I itemized those things in my head, I look down and my hands are pulling invisible threads from the blanket my hands were resting on. That surprised me because that was something Mom did almost constantly during her last week. Then she'd carefully place the threads in whoever's hand was next to hers. Pat and I would smile and get a tear as we realized Mom was seam-ripping away the things that bound her to earth, just like she use to rip seams out of my sewing mistakes. It was endearing and made a loving memory for me. Sometimes she'd pull threads gently and sometimes furiously. I will not say me pulling threads is the initiation into my future demise; but I can say that the more threads we remove now, the less things hold us back from loving God and others. For those who read this far: you're impressive. Thank you.
Doc: (sitting on exam stool across from me speaking in his normal, gentle voice) "You have liver cancer."
Me: (pause) "Okay."
Doc: (standing in front of his stool speaking louder) "Ms. Kaba, You have liver cancer.
Me: "Yes, I heard you."
Doc (walking across room and putting his face 6" from mine, loudly said.) "You have liver cancer."
Me: "Yes. I did not know that yesterday. I know that now. The only thing that has changed is now I know."
Doc: (looks exasperated and walked back to his exam stool and sits) .... he explains the next steps.
I named the cancerous growth "Oscar the Grouch". The team of doctor's job is to encourage Oscar to go to the garbage can and out of me.
This is my diary. I have not published it because I have not told my sons until I had more information. I plan to do that tonight.
August 4: Two weeks ago (July 17) I was diagnosed with liver cancer. I don't feel sick or bad, so the only thing different is now I know. I see the hepatologist in two weeks (Aug 15) . I am not looking forward to that as I fear he will be rude and condescending as previous MDs of his race have been to me. Since September 4, 2008, when I discovered I had Grade 4, Stage 4 cirrhosis and cysts in my liver that I would not go on the transplant list nor did I want heroic measures. I still feel the same way.
August 11: By Tuesday, I could feel swelling of the liver that "outlined" my rib cage about 1 inch. It feels hard and bumpy when I rub it. I sleep on my right side, so I need a Tylenol and a small pillow to press against the ouch so I can sleep.
By Thursday, my family doctor said to not get surgery next Wednesday. I am to call the gastro to say my family doctor doesn't want me to have banding of esophageal varices until after I see the hepatologist next Thursday. I call and the gastro's nurse was quite rude about it. I call my family doctor's nurse for clarification because I am referred to two hepatologists, a gastroenterologist and an oncologist - and I'm to make the appointments but my insurance has not received the paperwork to say who they will pay for. Currently, the medical maze is more frustrating then the cancer.
By Friday, I need a Tylenol three times a day to manage the discomfort. In hindsight, I think some of this is because of stress not the disease. The lumpy outline (swollen liver?) is now past my rib cage about 2 inches and I need a big pillow to press against my belly to rest at night. I had a great day. I went to the hospital (where my hepatologist doesn't practice) and attended an orientation, a cancer support group and an earring making class. The Cancer Support Community is fully funded through the late Gilda Radner. They have dozens of things to support cancer patients and caregivers; they even have cancer yoga that teaches positions to help cancer in different areas of the body - no pretzel-bending poses just simple poses. They suggest we make two pair of earrings - one for us and one to donate. Each cancer patient who goes to the hospital can pick a pair of earrings to take home for herself or to give (like a husband to give a wife). I made a pair for my sister and donated the other. They must have 500 different beads to chose from. While I was making earrings, the lady next to me was a caregiver for a lady getting her fourth round of chemo; the patient comes in with her little hat to cover her bald head and a big smile. She said she looks forward to chemo day because she gets to work on her painting while she's sitting in the chemo chair, then make earrings and then go home and be sick from the chemo while cherishing memories of her fun day. Later the art therapist arrived and showed us her progress on her painting of butterflies. Like many, she is sick the next few days, but said painting and creating really helped her through the process. If I understood it correctly, she can keep the painting when it's done or donate it to a fundraiser for the support group.
Saturday my sister, Pat, and I went grocery shopping after sharing berry smoothies I made; she made salmon sandwiches for lunch. I went home and slept for a while then cleaned out my closet to give things to the thrift store. Trying to do those things so Pat will have less to do if/when I pass.
Sunday now and my liver is uncomfortable most of the time and if I yawn or lay on my right side, it is painful even with the Tylenol (pain is 4 on a scale of 1-10). I went to Pat and Marshall's church. I talked to the pastor's wife to see if she knew my hepatologist - she wasn't familiar with him. Advent Health has hundreds of doctors, so it's not surprising. I made an appointment with her pastor/husband for counseling. I said I had two things on my mind: What questions do I ask myself to decide if I want to fight cancer or let nature take it's course; and I would like to be in his church even though I believe differently and need to figure out how to fit in.
I still haven't cried. I haven't had a down day. A lady at church asked me how I felt. I replied, "If I was any happier, God would have to turn me into twins to hold all this joy." That is true. Then I say to myself, what the heck is wrong with me? Don't normal people grieve and kick and scream and cry and carry on when they get a cancer diagnosis? And all I can say is "The only thing different is now I know." A month ago, I had no idea. Maybe it would be different if I felt connected to a partner who would hold me and comfort me while I cried - but I don't think so. I grieved 11 years ago when I discovered cirrhosis and came to accept that either cancer or a bleed from the varices would end me - unless a car wreck or other surprise beat the liver to my demise. I said 11 years ago that I wanted to make it 10 years - and now it's a few weeks short of 11. That's exceeded my expectations and I am content. I've had an adventurous life and I am so full of joy and good memories that outshine the sad times of my life.
It amazes me anybody gets well after a serious diagnosis. I've been to so many doggone appointments that it is hard to find time to rest adequately. I also have to do the legal stuff to prepare if this becomes terminal. I need a US will as my Canada will may be a mess for my executor to figure out. I need to change my recipients for my life insurance policies, etc.
I contacted my boys July 31 to ask when it was convenient to call. Neither responded. Since they are busy with their careers and large families (5 kids each), I understand. Being mostly estranged (maybe 2 conversations a year that they allow me), they are accustomed to not having me in their life. I won't post this until after I see the hepatologist and can give them more accurate information - like prognosis and projected graduation to heaven date or month. Then I will contact them. I love them dearly; but I also know when they have detached that my detaching from expectations and just being pleasantly surprised by any movement is a blessing. If we don't find the skills or strength to reconnect here; I firmly believe in the afterlife. I see their point, in some ways; I use to be a drama queen and that must have been very annoying to live with. I think they would be amazed how I have grown after I realized nothing in life - even myself - is any of my business or even important in the overall scheme of life. The scriptures say, "Looking unto Jesus the author and finisher of our faith; who for the joy that was set before him endured the cross..." (Hebrews 12:2a). That scripture also comforts me about my future death.
I now think of death very similar to giving birth. When my two boys were born, my goal was to be awake to participate and greet them, Another goal was not to scream even when labor hurt. I didn't want to lose my dignity (oh, pride is strong at times). Those are the same goals I have for my future death whether that be soon or decades away. Back then my body pushed out 8 lb 14 ounce boys; but whenever my time on earth is up, I will push out the real me from this "earth suit" that has allowed me to live on this beautiful planet and live in the eternal: "Christ in me the hope of glory" (Col 1:27) and "In Him I live and move and have my being" (Acts 17:28). Those scriptures won't be fleeting glimpses, but authentic, eternal reality.
August 17: It's one month since discovering cancer. It feels there has been a lot of progress but no progress. My boss is being awesome; I am so blessed to be working for this 32 year old, single mother of three who is also battling cancer.
After complaining about the pain and swelling; it is going down and I don't need pain medication. The doctor did give me something a bit stronger in case I need it. I took 1/2 a pill one night and it worked great.
I saw the hepatologist on Thursday. The one my two doctors wanted was Dr. K. This is Dr. C. but he was available to see me quickly and there was 2 month wait for Dr. K. My sister, Pat, went with me - after her spending the morning in outpatients for injuring her hand. I'm blessed to have her in my life. We both liked Dr. C. He was efficient, thorough, knowledgeable, caring, a touch of humor, and great at answering questions and giving information. The radiologist who read the MRI said the cancer was 7cm; he said it was 5.5-6cm but had grown into the portal vein which often causes cancer to metastasize to the lungs. He wanted to assure it has not metastasized, so he ordered two more C/T scans; then got his scheduler to book them for 90 minutes so we'd have time to find the radiology department. The C/T nurse didn't do very well with the IV, and one bruise is about the same size as my cancer. After two unsuccessful sticks, I said since this is 7th Day Advent hospital, would she pray before she made the third try. She smiled and prayed out loud, then I prayed and the needle went right in, worked and left NO bruise. Hallelujah!
On the way out of the liver clinic/transplant clinic, Dr. K. (the specialist my MDs wanted) was standing in the elevator with a co-worker and a patient (guess). I whispered to Pat to observe him. Neither of us said a word, but observed like we were Nancy Drew or Sherlock Holmes. He seemed arrogant, spoke rudely to the other people, even said he wished his vacation had lasted longer as he was sick of sick people. That did not give me much trust in him to guide my medical part of this disease. Pat's opinion was similar. Then I told her he was the doctor my doctors wanted; we both agreed it would be a bad match for me. I wrote my family doctor and asked him to please leave me assigned to Dr. C. I can understand how Dr. K. can be frustrated; as a hepatologist and transplant surgeon, I'm sure he has a very low success rate and sees many patients die. I can understand how even a very compassionate man could have bouts of frustration with his chosen profession. If you don't want patients to die; then become a obstetrician and birth life - don't chose a specialty where the patients who are sent to you have not been helped by various other specialties who couldn't help them before they land on your exam table, in my opinion.
August 16: I went to cancer support. The Advent Health only has group once a month and not much else - where the other hospital (Florida Hospital) has a full schedule of activities to help cancer patients and survivors and caregivers. I was the only person, so had a one-on-one with the counselor. Rather boring for me as she wanted to talk about my history. She was an intern, so I answered her questions openly as she learns her job. Then I made and donated 3 pair of earrings. I was tired and came home for a nap.
Miscellaneous stuff:
I remembered something my MD in Tulsa had me do when my gall stones were causing pain. I bought a large square of unbleached wool felt and a bottle of castor oil. I put the oil thickly on the fabric then put the oily side against my midriff where the pain is. I wrap around myself with two rounds of plastic wrap, tuck the edges under the edges of the wool so the oil doesn't run. Then I wrap a 6" ace bandage around it all and wear an old t-shirt that if it gets stained is no biggie - and put an old towel under my torso while I sleep. I remember back in the 90s that after 3 months, the cloth went from off-white, do dark, muddy brown from the toxins that had been pulled from my body. I started doing that again and my liver started feeling much better and the wool is already turning a pale orange/yellow/tan as it pulls out the toxins. I am grateful to God for helping me remember that old-wives therapy since it's helping.
I am having some nausea. I still have pain near the cancerous spot when I yawn, but not as bad - or maybe I'm just learning to yawn more slowly so the jolt to the cancerous spot isn't as intense. I no longer crave animal protein and am enjoying more vegan foods. That is good for my liver.
Now I'm just waiting to hear back from the hepatologist with results of the C/T, information if the cancer has metastasized, and what stage of cancer I have. Then I will tell the boys and my niece.
Spiritually things are different. The deep bond I've had with God for years now seems more real and precious. Above I mentioned my fear of losing my dignity. I told Pat's pastor. He's been hospitalized 9 times in 9 months. He told me some words of wisdom he learned from a nurse when he mentioned he felt like he'd lost his dignity. She said, "Your dignity comes from God - you can't lose that; your modesty may have been diminished,." Their cancer support may be puny; but their faith-based mandate has been impressive.
Pat seems to be taking my condition very hard. I feel sad about that; but I don't know how to help her come to acceptance. She will have to grieve the potentials of the future in her own way and all I can do is listen and care and be careful to not push buttons that cause her pain as she works through it. It's blessings like that that remind me I am not in control - God is and life is easier if I cooperate instead of rebel.
The big surprise for me was something I noticed while laying in bed resting and thinking about so many wonderful people who have touched my life and made it and more expansive and rich because of their presence. I realized many people I did not take time to tell them of what they did that was meaningful to me. As I itemized those things in my head, I look down and my hands are pulling invisible threads from the blanket my hands were resting on. That surprised me because that was something Mom did almost constantly during her last week. Then she'd carefully place the threads in whoever's hand was next to hers. Pat and I would smile and get a tear as we realized Mom was seam-ripping away the things that bound her to earth, just like she use to rip seams out of my sewing mistakes. It was endearing and made a loving memory for me. Sometimes she'd pull threads gently and sometimes furiously. I will not say me pulling threads is the initiation into my future demise; but I can say that the more threads we remove now, the less things hold us back from loving God and others. For those who read this far: you're impressive. Thank you.
August 21. I've known 1 month and 4 days now. I am tired of waiting; but turning it over to God. A secretary from the radiology oncologist called. I asked her to tell me the results of the C/T scan so I know if it metastasized. She said she can't tell me that. I asked if she could send it to my primary physician. She said he didn't need it. I asked how to get the results. She said to go to the hospital app on my cell. I went to the app and it wasn't there. I called the hospital; they sent me to the outpatient CT clinic but I waiting about 7 minutes and was cut off. I called the hospital again and they transferred me to somebody who could help. They said I could reach the tests through the hospital web site. I signed up and finally got to read it. Might as well have been written in hieroglyphics - I couldn't make heads or tails from it. I called my family doctor and asked if he could see me for a few minutes to explain it to me. I do know my treatment will be Y90. It is suppose to be good and I like that it only goes to the blood vessels that go into the tumor and doesn't affect other things. The current state is inoperable because the tumor has grown into the portal vein. I do not want a transplant. I had hoped for the treatment that they put a needle in and microwave the tumor so it dies; but the tumor is too big for that treatment. I used several online dictionaries. The treatment is for cancer that has not metastasized to other places. Yay. The tests want further testing of my T12 vertebra and spleen to assure the weird spots there are hemangioma and not cancers. I will need to have more banding of the varices of the esophogus. I hope they can do that when they do the outpatient surgery for the Y90 treatment. I did lose my peace and joy for an hour or two; but after learning lots of new words to read the report, I am back to my normal relaxed peace and joy.
Monday, 9 July 2018
Spirituality of Sexuality
A young, Christian friend wrote wondering how not to feel guilty about sexual desire for a marriage partner. Here's my reply:
I think of Hebrews 13:14. "Marriage is honorable in all, and the bed undefiled; but whoremongers and adulterers God will judge."
It does not say, "Marriage is honorable in all, and the bed undefiled; unless they do this or that sexual act and one or the other leads." No, it is specific what defiles the bed: whoremongering and adultery. It seems to be more who you do it with (your partner), not what you do when you do it with your partner, in my opinion. To me, consensual sexuality is the most important aspect and offering sexual union to God as a thanksgiving.
I recently listened to the book, "The Erotic and the Holy" by Marc Gafni for an Old Testament Jewish understanding of sex. Rev. Richard Rohr has an excellent audio, "Gates of the Temple: Sexuality and Spirituality." that gives the Christian perspective. I'm sure there are more, but those I can recommend.
From his website cac.org "Richard Rohr tells us that spirituality and sexuality are two sides of the same coin. Both are intended to guide us to the "gate of the temple" by leading us out of ourselves in love. Western cultures have tended to separate the two, calling one good and the other evil. While we welcome the transcendence of the Incarnation—God becoming flesh—we are bound by the dualism that equates body with pleasure as immoral and soul with disciplined intellect as virtue. We must move out of that mindset to see the union of the two."
Some world religions have a branch that teaches the sexuality of spirituality, or maybe that's the spirituality of sexuality. This does not include promiscuity, but evolving sex from procreation to sublime spirituality that merges the couple much deeper than physical sex alone. I think it helps them learn the unity of "Christ in me the hope of glory" and "in Him I live and move and have my being". Sex can be a physical manifastation of a spiritual truth.
I've wondered how I would respond if the Lord would ask at my judgment, "Did you fully enjoy the body and the sexuality I gave you?"
I had a dream one night. God was on his throne. He poked Gabriel and said, "Look at that couple." Gabriel astonishingly replied, "But, Almighty, they are naked and procreating." God laughs loudly and tilts his head back in humor, "I love it when my children are enjoying the gift of sex I made for them. It makes me so happy that they are fully participating." I awoke and wondered what if all the angels of heaven are cheering and rejoicing as a couple enjoy each other sexually?
I think that loss of inhibition and joyful participation can happen, and we can leave guilt and fear behind when we follow Biblical teaching and ignore Augustine's teaching on spirit/mind trumps physical. When we accept God gave us spirit, soul (mind, will and emotions) and a body... We can then stop elevating one above the other and return to wholistic self unity. The morals don't change, but our self-perception changes to become more like Jesus and His Jewish roots.
Sunday, 28 January 2018
Atonement Theories
What parts of the Bible a Christian focuses on depends
on which one or mixture of the seven (or more) atonement theories a person believes.
There are scriptures that substantiate each theory. Unfortunately, few churches
teach the various theories so people can see we are all one in Christ even
though we may emphasize different aspects of Christ's wonderful atonement.
Here's a summary of seven of what I consider the major
atonement theories:
(1) Moral Influence theory – Early Church
This theory focuses on not just the death of Jesus
Christ, but on His entire life. This sees the saving work of Jesus not only in
the event of the crucifixion, but also in all the words He has spoken, and the
example He has set. In this theory the cross is merely a ramification of the
moral life of Jesus. He is crucified as a martyr due to the radical nature of
His moral example. In this way the Moral Influence theory emphasizes Jesus
Christ as our teacher, our example, our founder and leader, and ultimately, as
a result, our first martyr. It is one of the seminal atonement theories for almost
two thousand years. Augustine’s writings show this theory; this theory was
defended by Abelard (1079 – 1142) when other theories were becoming popular.
(2) Christis Victor (Christ the Victor) Theory – Early
Church (classic version) and 20th Century (narrative version)
Classically, the Christus Victor theory of Atonement
is widely considered to be the dominant theory for most of the historical
Christian Church. In this theory, Jesus Christ dies in order to defeat the
powers of evil (such as sin, death, and the devil) in order to free mankind
from their bondage. This is related to the Ransom view with the difference
being that there is no payment to the devil or to God. Within the Christus
Victor framework, the cross did not pay off anyone, but defeated evil
thereby setting the human race free. The “narrative”
version of Christus Victor focuses more directly on how Jesus challenged the
violent powers that kept people enslaved. He healed the sick, forgave sinners
freely, demonstrated love and compassion and challenged the power structures
that enslaved people. Thus, we shouldn’t act as though Christians must battle non-Christians but to
love them like Christ loved the Roman soldiers, the Syrophoenician woman, the Samaritan,
etc. Sin should be taken
seriously but the only way to defeat it is through Christ’s way of life. This is still the predominant
theory in the Greek Orthodox, Russian Orthodox and other Eastern Christian
churches after the Roman church broke away from the other churches. The classic version was penned by Ireneaus
in the second century A.D.; the narrative version is an encapsulated and slight
variation version penned in the 20th century. It was written at a
time when loyalty to Christ vied with loyalty to Ceasar. It was never held as the one true atonement
theory but a starting point for new believers and expected that other theories
could be amalgamated as the person was lead into maturity by the Holy Spirit.
(3) The Ransom Theory – about 200 AD
This theory essentially teaches that Jesus Christ died
as a ransom (buying back) sacrifice, paid either to Satan (the most dominate
view of this theory), or to God the Father. Jesus’ death then acts as a payment
to satisfy the debt on the souls of the human race, the same debt we inherited
from Adam’s original sin. Penned by Origen Adamantius of Aleander (185-254); this theory may have been embraced prior to
that time. Origen was the son of a Christian martyr and considered a child
prodigy. This was written at a time when
Christians were heavily persecuted and were often martyrs for their faith and a
time when a potential martyr could be ransomed from their captures.
(4) The Satisfaction Theory – late 1000s
This theory was developed in reaction to the Ransom theory:
that God paid the devil with Christ’s death. Anselm saw that the ransom theory
was logically flawed, because what does God owe satan? Therefore, in contrast
with the Ransom theory, Anselm taught that it is humanity who owes a debt
to God, not God to satan. Our debt, in this theory, is that of
injustice. Our injustices have stolen from the justice of God and ftherefore
must be paid back. Satisfaction theory then postulates that Jesus Christ
pays back God in His death on the cross to God. This is the first Atonement
theory to bring up the notion that God is acted upon by the Atonement (i.e.
that Jesus satisfies God). It was penned by Anselm (1033
– 1109). This was penned at a time people lived in a feudal system; a carefully
managed series of reciprocal obligations. Lords living in castles offered
protection to villagers (vassals) and kept the community in order by
maintaining justice and the rights of the people and a time when penance (often
extreme penance) was necessary for forgiveness.
(5) The Penal Substitutionary Theory – Mid 1200s
Penal Substitutionary Atonement is a development of
the Reformation. The Reformers, specifically Calvin and Luther, took
Anselm’s Satisfaction theory and modified it slightly. They added a more
legal (or forensic) framework into this notion of the cross as
satisfaction. The result is that within Penal Substitution, Jesus Christ dies
to satisfy God’s wrath against human sin. Jesus is punished (penal) in the
place of sinners (substitution) in order to satisfy the justice of God and the
legal demand of God to punish sin. In the light of Jesus’ death God can now
forgive the sinner because Jesus Christ has been punished in the place of the sinner,
in this way meeting the retributive requirements of God’s justice. This legal
balancing of the ledgers is at the heart of this theory, which claims that
Jesus died for legal satisfaction. It’s also worth mentioning that in this theory the
notion of inputted righteousness is postulated. This theory dates back to Thomas
Aquinas (1225-1274) who believed Jesus offered up his life as a ransom. John
Calvin (1509-1564) went farther by declaring that this sacrifice was
orchestrated by God the Father in order to satisfy the demands of retributive
justice. This was written at a time that the court system became important to
society. This is the predominant theory in North America that was brought over
when people from various denominations emigrated for religious freedom.
(6) The Governmental Theory – Early 1600s
The Governmental Theory of the Atonement is a slight
variation upon the Penal Substitutionary theory, which is notably held in
Methodism. The main difference here is the extent to which Christ suffered. In
the Governmental Theory, Jesus Christ suffers the punishment of our sin and
propitiates God’s wrath. In this way it is similar to Penal Substitution.
However, in the Governmental Theory, Jesus Christ does not take the exact
punishment we deserve, He takes a punishment. Jesus dies on the cross
therefore to demonstrate the displeasure of God towards sin. He died to display
God’s wrath against sin and the high price which must be paid, but not to
specifically satisfy that particular wrath. The Governmental Theory also begins
the teaching that Jesus died only for the church, and if you by faith are
part of the church, you can take part in God’s salvation. The church then acts
as the sort of hiding place from God’s punishment. This view contrasts
both the Penal and Satisfaction models, but retains the fundamental belief that
God cannot forgive if Jesus does not die a propitiating death. It was developed
by Hugo Grotius (1583-1645) and was held by some Methodists but
not by John Wesley; it is espoused by the Salvation Army and the Armeniens. Grotius,,
who wrote this theory, was a Dutch lawyer and wrote books about natural law and
saw everything as unchangeably good or bad. He wrote this theory in opposition
to the penal substitutionary theory. James Allison summarizes the Scapegoating
Theory like this, “Christianity is a priestly religion which understands that
it is God’s overcoming of our violence by substituting himself for the victim
of our typical sacrifices that opens up our being able to enjoy the fullness of
creation as if death were not.”
(7) The Scapegoat Theory – Mid 1900s
The Scapegoat Theory is a modern Atonement theory
rooted in the philosophical concept of the Scapegoat. Here the key figures
are Rene Girard and James Allison. Within this theory of the Atonement Jesus
Christ dies as the Scapegoat of humanity. This theory moves away from the idea
that Jesus died in order to act upon God. Scapegoating therefore is considered
to be a form of non-violent atonement, in that Jesus is not a sacrifice but
a victim. There are many Philosophical concepts that come up within this
model, but in a general sense we can say that Jesus Christ as the Scapegoat
means the following. 1) Jesus is killed by a violent crowd. 2) The violent
crowd kills Him believing that He is guilty. 3) Jesus is proven innocent,
as the true Son of God. 4) The crowd is therefore deemed guilty. This was written at a time when non-violence,
especially as Christianity was viewed by Martin Luther King, Jr., Bishop
Desmond Tutu, and in Hinduism by Gandhi who had changed their nation through
non-violent actions.
If a person believes Revelation is a coming event on
earth; they will search the scriptures to understand and build upon that belief. If a person believes Revelation is what Jesus
did/is doing in heaven as He prepared/prepares a place for us; they will focus
their Bible reading on other areas – like how to be examples of his love (1
John 4:19) and how if we’ve seen Christ then we’ve seen the
loving God. (John 14:9).
** NOTE: Some sentences are plagiarized, if you wrote it, I'll be glad to give you credit.
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