Refiner and Purifier of Silver

I received a message from my oldest son. That put a smile on my face and a little more happiness in my heart. I was grateful we are opening up with each other in our love and validation. Each of us is going through a hard time; my heart breaks for him as he goes through his hard time. However, my heart rejoices that he is handling his adult responsibilities with compassion and selfless love. I am proud of him and his family of 7.  As a mother, I wish I could carry his burdens; however, I know those hard times are what strengthen us bring out the rich flavors of God in us. 

This following Bible scripture interpretation has meant a lot to me through the last 15 years and I'm dusting it off to apply to my situation, and possibly it will be meaningful to others:

Malachi 3:3 says:  "He will sit as a refiner and purifier of silver."

This verse puzzled some women in a Bible study and they wondered what this statement meant about the character and nature of God.

One of the women offered to find out the process of refining silver and get back to the group at their next Bible Study. That week, the woman called a silversmith and made an appointment to watch him at work. She didn't mention anything about the reason for her interest beyond her curiosity about the process of refining silver.

As she watched the silversmith, he held a piece of silver over the fire and let it heat up. He explained that in refining silver, one needed to hold the silver in the middle of the fire where the flames were hottest as to burn away all the impurities. The woman thought about God holding us in such a hot spot then she thought again about the verse that says: "He sits as a! refiner and purifier of silver." She asked the silversmith if it was true that he had to sit there in front of the fire the whole time the silver was being refined. The man answered that yes, he not only had to sit there holding the silver, but he had to keep his eyes on the silver the entire time it was in the fire. If the silver was left a moment too long in the flames, it would be destroyed.

The woman was silent for a moment. Then she asked the silversmith, "How do you know when the silver is fully refined?" He smiled at her and answered, "Oh, that's easy - when I see my image in it."

If today you are feeling the heat of the fire, remember that God has His eye on you and will keep watching you until He sees His image in you. (Rev 1:14b)

__________________________________________

I am grateful my sister has sacrificed to spend time with me. I feel so unworthy; but so very grateful. Today we went grocery shopping; it tired me out so much I needed two 2-hour naps this afternoon. Some days the fatigue is intense. I'm grateful I had 2 good days this week.

A week or so after discovering the cancer, I could start to feel a hard rim (it felt like burned meat loaf crust texture) that was about an inch past the bottom of my right ribs. It seems to be growing and this morning as I was laying in bed, the hard portion is half-way to my belly button and covers most of the ^ notch between the left and right lower ribs.  I felt a little frightened, then realized that either God is in control or He isn't.  In my life, God is in control and I will trust Him to heal me or take me home. I am so content in my walk with Jesus, that I honestly do NOT have a preference. 

Four out of Five

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

Adjusting

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.

This Could Become Frustrating

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.

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. 

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.

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.

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.

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.