Life Continues to Arrive

Like raindrops while on a gentle evening walk, life continues to arrive and I could see it as a way to refresh and cleanse me or pelt me. I choose to see it as cleansing me. 

The better I adjust to having cancer, the more peace I have and the closer to Jesus I feel. He's here - almost tangible - in my living room, in my bedroom, in my car, wherever I am - He's there.

Some of the blessings:

• I get to eat lots of low-sugar added fruitcicles in lieu of water that tastes to me like a mouthful of liquid coins. 
• I've lost 24 pounds in about 6 weeks and gained 4 inches around the waist so I don't have to buy slenderer clothes. 
• I can drive an electric cart when I go shopping. It's fun. 
• The funny ways my pain pills make me feel and cause me to walk like I just got off a boat on a stormy sea. I find it fun; but a bit embarrassing when I walk into cars or buildings.  
• Since I can't eat much, I get 5 or 6 tiny meals. I tend to find a food that works and stick with that and fruitcicles for the alternative meal. The recent top meals are bean burritos with ranch dressing or meat-free perogies.

Some of the disadvantages:

• Insomnia. Yet, I seem to survive on 90 minutes, a gap and then 3 hours of sleep a night.
• Pain. Some days it's minimal and other days I may yelp when I move. But still more good days then bad.
• The probable bed sore on my back that oozes yellow stuff.

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 I am blessed my sister goes to medical meetings with me and takes notes and that she truly loves and cares for me - even her self-sacrificial love without complaining inspires me. Yet I often feel guilty as she is busy care giving her husband, their business and their home. It is so hard to see my sister so pained by my future demise. I rediscovered this stanza from Psalms 90:10:  "Our lifetime is seventy years or, if we are strong, eighty years."  I am often amazed that I have lived this long with 47 years of liver disease; I count that as a testimony to God's goodness and my obedience. I am content. 

Today sister and I met with the hospice assessment nurse. We learned what they can do for me and what hospice means. Mixed feelings. I was disappointed they help me to self-care when I can no longer do that - like help me shower, change dressings, etc. They will help get the hospital bed and other equipment to help me better maintain my independence. They do not help with cleaning or shopping; so I will need to hire that done eventually. I would also have to give up my family doctor for a hospice approved MD.  They do not have an end-of-life facility; but I would need to go onto Medicaid and into a rest home during the end-of-life time. That means a lot to think about while I still have the facilities to think for myself... since I feel hepatic encephalophy increasing some days.
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I was periodically thinking about Reverend Patsy the last few days. One of the greatest Christian skills she taught me during my 8 years under her ministry is controlling my mind.  I remember when she walked up to a parishioner during ministry time and said "You have the most beautiful butterflies flying around your head. One will land on your head for a moment, then another. It's beautiful." Then she prayed in tongues and gave the interpretation that the butterflies were thoughts. This person would not try to keep the godly thoughts, but just allowed any thought to bombard him/her. She said this was causing doubt, confusion and harming his/her Christian walk. I knew I was similar. I didn't know how to encourage my good thoughts and shoo away the negative thoughts. But I became aware of how much of my thought life was spend on topics I didn't like and weren't helpful. My brain - and I wasn't in control of it. Yucky place to be.

When I was saved in 1975, two of the first scriptures I underlined in my Bible were these: 

Philippians 4:8 - "Finally, brethren, whatsoever things are true, whatsoever things are honest, whatsoever things are just, whatsoever things are pure, whatsoever things are lovely, whatsoever things are of good report; if there be any virtue, and if there be any praise, think on these things." 

and

Ephesians 5:19 - "Speaking to yourselves in psalms and hymns and spiritual songs, singing and making melody in your heart to the Lord.." 

It gave me the desire to do that; but left me powerless to activate that scripture. It seems when I can't automatically do the first scripture, then go to the second scripture until I overcome negative thoughts. 

It became easier to do both of the above "thinking" scriptures after God placed me under Reverend G's ministry where he taught Christian Lectio Divina and we practiced twice a week as a group. He would read a passage of scripture and like a buffet, each attendee was to pick out a short phrase or even one word that had spoken to our heart. He would remind us to sit with our hands in our lap, our feet flat on the floor, be aware of our slowing breathing. Then he'd read the passage again and we'd "practice" lectio divina.  It is a practice because it does not come naturally to shoo those butterflies and allow the butterfly of the chosen scripture to be the only and repetitive thought.  We were not to analyze the scripture, memorize the scripture, but to let the phrase sit gently in our mind as we repeated the word or phrase over and over during our 10 minutes of contemplation. I've done Lectio Divina so frequently with Psalm 27: 1-6 that it's butterfly is at the ready and when negative thoughts come, my knee-jerk reaction is "You Lord are the Light who keeps me safe."  Hallelujah. At times, God graces me with the gift of silence from Psalms 46:10 "Be still and know that I am God" - where I sit silently inside and silently outside while gazing at my loving Father God, who gazes at me. 

I found a beautiful article about God's gaze at https://www.ignatianspirituality.com/god-looks-at-me/ 

God Looks at Me

By - Loretta Pehanich

 While reading Pope Francis’ book, The Church of Mercy, I stopped in my tracks. He asks, “Do you let yourself be looked at by the Lord?” I wondered if I take time to be aware of God’s gaze upon me. Pope Francis continues, “God looks at us, and this is itself a way of praying.”
The Pope’s words led me to the following contemplation.
I picture myself before God, like a child self-dressed for school standing before a loving parent. “Just let me look at you,” the parent says.
I stand a little taller, enjoying that smiling gaze, knowing I am the center of attention. True, my outfit is mismatched, and there’s mud on my knee and a tear in my sleeve. But God overlooks all these things, seeing only with joy the beloved child who eagerly looks back into a loving face. “Turn around.”
I pirouette, allowing myself to be studied, and God smiles. I stand looking into that face, and Divine Mercy looks lovingly at me.
I have a drawing in my hand, and I offer it for God’s approval. I’ve made a picture of my life’s plan, with all its decisions and expectations. I’ve scribbled in where I will do this or that. I picture it like a hopeful kindergartener’s rudimentary artistic effort. God accepts it, looks at it, and laughs. “It’s beautiful.”
Again, I find God gazing upon me. And I return the gaze.
Suddenly worry sneaks in. I wonder if I am going to get my picture back. What if God shreds it?! I gaze at God, not saying a word, but the anxiety shows on my face, I am sure. I sense the Almighty saying, “Trust me.”
I relax a little, but I can tell I have not surrendered that drawing. Will God hang it on the heavenly refrigerator? Will God show it proudly to every visitor to the house? “Isn’t this precious?” I can imagine God saying, pointing to my picture.
I return to the image of God and me looking at one another. God stares at me a little longer with love. I find myself letting out a deep breath. I didn’t realize that I was holding on to it. I exhale loudly.
“Trust me,” God says, handing back my drawing. The Holy Spirit wrote something on it. What does it say?
I stay still, allowing my Creator, my Redeemer and Sanctifier to hold me in a long, loving look. And suddenly, I am ready to go to sleep, and this is OK with God. While I sleep, God will continue to look at me, like a parent smiling into the restful face of a babe who gently snores with complete surrender.
Still, God looks at me.

Death, Dying, Caregiver and Patient Thoughts

Three of my oncologists and my family doctor have all suggested going from palliative care to hospice. My unique sense of humor found that hilarious. Two weeks ago when I asked my life expectancy, they said I had a 10% chance of making it five years. I realize they don't have a crystal ball to give me exact date and time; but it seems there is such a disparity between the two weeks pronouncements.  Since the oncologists make their living with cancer patients, and my main oncologist does mostly liver cancer, it seems experience would have him able to say I have months or years left. It would be nice to know more so I could plan a budget so something is left for my progeny and it doesn't all go to the medical team and hospitals. I do know that God knows how long - so I guess that's good enough for me.

I've been thinking of the responsibilities of the caregiver vs the responsibilities of the patient. My sister has agreed to be my caregiver and person to make decisions when I no longer can. I sit here with tears because I had no idea how much compassionate responsibility this would be for her and how challenging it is for her - and for me to see her struggling emotionally and spiritually with my demise (whenever that is). I hate the pain this is causing her. That hurts more than the cancer. As a Christian, I pray God uses this for her her good. I rely on "All things work together for good to those who love God..." in Romans 8:28. I'm so grateful she came to Christ I think 13 years ago. Now she's my double sister: genetic and spiritual.

We're both trying to make this easier for each of us as we discuss my future demise. It is growing us closer together in a way that is God-sent and I am grateful for that.  I'm so grateful for "Five Wishes" program that in this state is a legal document that  makes my wishes known so family will have a blueprint to know what I desire. You can read more at www.fivewishes.org - I'd highly recommend friends my age consider doing this long before you have a terminal diagnosis; so you can talk about this with your loved ones without the added burden of emotions associated with a loved one's palliative care making it harder. 

I have a US/Florida Five Wishes almost finished, my DNR (do not resuscitate order is signed and filed with my doctors and hospital), my eco-friendly or natural burial and graveside funeral-ette are being planned before my brain gets to foggy to do it and I'll need to pick my hospice facility eventually. I've lived a simple life, and want a simple send-off. I'm fortunate that Gainesville has an eco-friendly cemetary; where my corpse will have a tree planted on top of me and my remains will fertilize that plant.   

Here's a quote from Carlos Castanada in "Journey to Ixtlon" that touched me deeply when I read it a few years ago and compelled me to change my mind from cremation to a natural burial:

He explained that a man who gathers plants must apologize every time for taking them and must assure them that someday his own body will serve as food for them. “So, all in all, the plants and ourselves are even,” he said. “Neither we nor they are more or less important.

Except for my will; the other documents have been or are being discussed with my sister. Are my wishes something she would be comfortable fighting for when I can no longer be proactive for myself? If there are things repugnant to her, then my prayer is that we can discuss them now and make compromises so both of us have some comfort and some discomfort.  No man/woman is an island; and I try to keep that primary as I move forward. We are unique sisters, but even during these emotional discussions - we have found things to laugh about. Maybe I can laugh about them because I see death more of a spiritual exercise to bring me closer to the Father, then preparation for a physical end. I know I'll go to heaven - not because of me but because of God's grace - and I know He's promised when there's a new heaven and new earth I will have a new body.  Plus, I've had a near-death experience and I miss heaven so much. It's a yearning to return to my Creator and that wonderful peace He gives that is so awesome it can't be put into words.
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I don't remember being the class clown; but I am having fun laughing at my cancer. I mean who wants to spend the rest of their life whining and crying and regretting when I can find things to laugh about. Here's a couple of funny ones: 

A telemarketer called. I was coughing until I could hardly hear him speak. Cough out - wheeze in. Trying to find common ground, he said, "Oh, sounds like you have the same thing I had last week - it's sure nasty."  My reply: "I'm sorry you had incurable liver and lung cancer last week; it's great you can still work."  Dead silence.  He talked another few seconds, didn't try to sell anything and said good bye. Neat trick to use with telemarketers!

A thought from today: Since I have opted to not be embalmed or cremated. I wonder if I'll be sitting in heaven around Jesus feet and feel the worms wiggling around my ticklish feet on earth and I'll break out laughing. I believe Jesus would laugh with me on that. I intuit his sense of humor was part of what drew the crowds to learn from him.

And if my sister ever reads this: please think of me and say, "Beep, beep, I'm a little bread box."  It was a game we played riding in the back seat of Dad's Kaiser from grandma's house. Fond memories we both still laugh about - we can play that game together or apart - so when you miss me -- you know what game will bring us close until you turn 97 (like Mom) and join us in heaven.
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I can not put into words how much my sister's care means to me. I realize she is caregiving me, her husband who has had a stent put in two weeks ago and another one a few days ago and she is running their business during a very busy season. Yet she finds time for me. She goes to all my MD appointments to scribe and ask questions; she takes me grocery shopping or if I'm too feeble, picks up my groceries. She carries them in the house and puts them away. She adjusted my toilet riser and then hugs me and says she loves me - because she knows how frustrated I am that I don't have the strength to do what I could even two months ago. She even took my laundry from the dryer and folded it until I figured out I can sit on my roller chair and do it myself. I don't know what I'd do without her. In many ways, big sister, I grew up wanting to dress like you, act like you, be smart like you, be athletic like you, be like you and you were my hero - you still are. Thank you from the bottom of my heart. I love you more than I can put into words. 

I have the easy job: just trust God as this chapter of my life unfolds and I get to the "...happily ever after" in heaven. You also trust God; but your job seems so much harder: so much detail work to walk this path along-side me, so much balancing so many things, so much responsibility. You've cried about my health, but you've never complained or shown self-pity about your new responsibilities. You're amazing!  

My near-death experience

My death experience was amazing and very unexpected.  I’d read books where people who died talked about going through light tunnels and found angels, Sunday School style streets of gold, etc. Mine was different.

In 2016, I had an episode of ascities and edema due to cirrhosis. Both my family physician and gastro were preparing to go on their month vacation (Canada’s socialized medicine perk). I would call one and told to go to the other; I went back and forth. I was given all sorts of prescriptions for tests, but didn’t get to see either doctor. Because the waiting line at the hospital to get blood tests can include a several hour wait (another socialized medicine perk); I got up early in the morning and was there at 7am so hopefully would be home soon. As I started the walk from the parking lot to the main entrance, I could not gasp enough air to walk that far. I went to the Emergency Room to sit down and get a breath before I walked all the way to the laboratory. The triage nurse took one look at me and refused to let me go without being seen. The ER was still quiet, so I got to see the ER doctor within 10 minutes (often there is an 8 hour wait to see the doctor).  After 20 years of socialized medicine and decades of capitalistic medicine – there are pros and cons for both.

He had the lab phlebotomist come to my cubicle to get my blood; had me put in a wheel chair and pushed to X-ray for a chest X-ray and treated me like I was a queen. He had copies of the tests sent to him since he would be working at 10pm the next night and would check the results and call me. He did! He said to have somebody drive me and to bring a suitcase because I’d probably be admitted.  A friend drove me – fast – she even drove up the off ramp to get onto Veteran’s Highway quicker.

We arrive at the hospital and she drops me off at the ER door so I didn’t have to walk far. The triage nurse knew I was expected, had a wheelchair for me and I went first in line past all of those who had been waiting hours. Doc showed me the X-rays, explained ascities, explained my right lung had no air sounds and was full of fluid. He started a glucose IV drip. The internist arrived about an hour later to admit me. The only problem was I had no pain; but he was determined I did. When I refused his narcotic pills, he had pain meds injected through the IV. They don’t help me sleep comfortably, they make me hyper.

The first on the agenda was to reduce the ascites, so I was taking lots of diuretics and was grateful the bathroom was about 4 steps from my hospital bed. He approved of my vegan lifestyle. My first breakfast was fried eggs, boxed juice, milk and cold cereal with soggy-buttered toast. I didn’t feel like eating, but none of those were vegan or health-building and turned my stomach. The third meal I refused brought the dietitian to my rescue; she was appalled I was a vegan not a lacto-oovo-vegan and gave a lecture on good dietetics (I prefer nutritionists who usually embrace vegan or vegetarian lifestyles). She thought since she’d removed the sausage and bacon that it was vegan. Live and learn. By the end of the week, the food staff grasped what vegan was and I made sure to compliment the lady who delivered the food.

I was admitted on a Friday night. By Wednesday, I’d lost 30 pounds of water weight and the internist was ready to start transfusions so my platelets would be high enough I could have my lung tapped to remove the fluid. The floor nurse brought in blood, showed me the three places where people had typed and cross-matched it and started the IV. If I’m at the teaching hospital, they give two bags of platelets; however, a regional hospital does not have access to platelets, so they use plasma.  The first bag wasn’t so bad, except I got very cold. The second bag I started not only being cold but felt drunk. I was out – top half of my body hanging over the bed rail and the other half laying down on the mattress.  It just happened a nurse walked by and saw me. She started removing the IV and flushing it with water. The plasma was golden colored; so my first groggy, drunken-feeling comment was, “Was that Jim Beam or blood?”  Oh, my, did that offend her and she went off on me that she didn’t make a mistake. I was trying to be the class clown and add a little humor. It didn’t work. She continued to take my vitals. When I felt safe to ask another question, I asked her how low my blood pressure went. She said, “I won’t tell you, but currently it is 50/30.”  I’ve wondered how low it went. 

During the time I was out; I call my death experience. My MD said it wasn’t because they didn’t need paddles to start my heart. But it was still a very spiritual experience for me. Several months later, my boss had a similar experience only she needed paddles. When comparing notes, they seem consistent only she got CPR and heart paddles and I got IV fluid.

I felt lighter than air and although I wasn’t floating near the ceiling, I was floating in warm, unconditional love at a here-before unknown place. I have never felt so much acceptance, so much love, so alive, so cherished, so peaceful and joyful or safe. I knew there were millions of other people there with me although I had not yet opened my eyes to see them. We were all separate entities; yet we were all a unity of loving acceptance. I could feel Jesus there and loved ones who had gone before. I knew it with such certainty I did not open my eyes to see them. It wasn’t a physical, emotional, intellectual knowing – it was a knowing that permeated my whole being. Heinlein fans may use the word gork as that is the only way I can even start to explain it. Sometimes I recall a starry sky above me, but I do not know if that describes it or if it is a true recollection or superimposed over the event. With eyes closed, I don’t know how I could see stars; but the metaphysical does not have to follow the rules of the physical universe.

In Acts 17:28, the Bible says, “In Him [Jesus] I live and move and have my being.”  In Colossians 1:27, the Bible says, “Christ in me, the hope of glory.” Although I knew I was in Him and He was in me and we were both separate yet unified, I can not adequately put that into words any more then I could write about how it feels to be in love. I now understand how the closer a Bible writer came to perceiving God, the more similes and metaphors were used and less precise descriptions could be used. There is no language to describe the metaphysical accurately.  

When I gently left that place, I was profoundly changed, especially in my doctrine. It took a week before I could care about my surroundings. My only goal was experiencing that blessed place again. By two weeks, I was willing to communicate with others and started back to work and could concentrate to do my detailed job. But in my quiet time I wanted to close my eyes and return to that beautiful place. It was like I had a heaven-shaped hole in my life that only heaven would be able to fill.  About six weeks later, I knew God was not going to fulfill my dream of a quick return there. I made an effort to participate in my earth-life, work, enjoy friends, read, music – do the things I had done before heaven happened to me. At night during my quiet time, I would hold my clinging cross and meditate on Psalms 28 and feel a small percent of what I had felt that special day. It brought such comfort and joy to consider returning there.

I have looked forward to the time God calls me to return on a permanent basis. I don’t want to rush my death as I believe preparing to die and dying is some of the most important spiritual work a person can do. I’m trying to enjoy the process – the same way as I enjoyed the process of learning my relationship with God when I accepted Jesus on October 11, 1975.

6am thoughts

Yesterday I felt terrible.  I was surprised how much pain I was in. I didn't think my liver would hurt that bad until the last few weeks in hospice before death.  I realize the liver has no pain receptors, but the tumors swelling cause pressure on the "shell" of the liver - and it has pain receptors. They were working overtime yesterday. I am grateful it was a slow day at work.  I called my MD and we'll try a new pain medication.  I pray today is a more comfortable day working.

Approved by Two out of Three

Two of the three oncologists plus the tumor board have approved me for Y-90 radiation treatment.  The second oncologist did not approve me, I presume for all the concerns he told my sister and I. I would be concerned if the third oncologist - the one who will do the actual treatment did not explain why and his massive experience in doing the technique. They are treating both tumors and think the one in the right part of my liver has "seeded" or made microscopic tumors around it.  The Y-90 should also poison the seeds to death. Since the tumor is connected to the portal vein, the second oncologist was concerned the Y-90 radiation balls could kill that side of the liver and the other side may not be healthy enough to support life.  But, since they are Y-90ing both tumors (one in each side of my liver) at the same time.  I am a little concerned about that, if it does lower function. Then I remind myself that my body is mortal, not immortal. I also realize this is not a cure, but palliative care to give me a longer, more full life. I doubt if it would be much fuller then my fatigue-controlled life - or minimal. It does seem like a good option. 

First I will have the biopsy on T-12 vertebra so it can receive Y-90 at the same time, if needed. I'll need two days off from work for that biopsy. When the results of that get back, the team will do a trial run.  It will take 2-3 hours while they put a small tube in my femoral artery and map the direction to my liver and then discover if there are veins close to the tumors to use.  The day they map, they will put CT scan dye or contrast through the tube and into the vein and run CT scans to assure it will go into the tumor area and not throughout the liver and kill what working cells I have remaining; or it won't go to the stomach and kill areas of my stomach causing incurable ulcers or damage my lungs. A week or so after the trial run, I will go back and they will run another tube in my groin up to the pre-mapped spots on my liver and release the glass beads full of radiation. Then I stay overnight because of my low platelets (thrombocytopenia), and go home to possible or probable flu-like symptoms for up to a month. The only thing standing in the way is my family doctor submitting it to my insurance company and them improving it. 

I need to vent.  I have been very pleased with everything about Orlando Hospitals: nice layout, friendly, customer service, generous with listening and answering questions. I've never felt rushed by doctors or staff. The cancer support area is amazing.  But my hip-hip-hooray came to a screeching halt on Friday when I had to visit medical records. It is located 2 blocks from the hospital in a 7 story building. That's a long walk each way for a cancer patient who has fatigue.  My family doctor has not received any documents from the three oncologists and he needs their recommendations so he can ask my insurance to cover the Y-90. I saw the oncologist's physician's assistant Friday. She said hospital rules are they can't send them, only medical records can because only they are allowed a "duplicate" stamp. That's why I walked that far; to get copies. They had a waiting room the size of my bathroom that held 4 folding chairs. There were 8 people in line. There was one woman at the window and she was gone most of the time or talking on the phone.  The other women in that room were not assisting customers. There was not even a "take a number".  I waited about 15 minutes and the lady in the window did not smile or acknowledge customers.  I did sneak in to read the letter by her window:  It was $6.50 per page plus 7 cents copying fee. I'd seen my nurse looking at the files, and each was about 3 pages long.  That would be over $50 for me to pay - and to add insult to injury, they will take up to a month to submit them.  The rest of the hospital is so modern, efficient and friendly - this felt like a time warp back to early 1940.  They possibly haven't gotten things updated; but that shouldn't be an excuse for lack of efficiency or kindness. I'm waiting for the next time the hospital sends me a customer satisfaction review - I have the anger out, so can give honest but firm feedback on the poor way that department is managed.

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)

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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