Hospice and Facebook Thoughts from our daughter Ruthie

     I think it is time for another update as I have been with hospice now for over a week and pain is upon me.  I am taking Tylenol and Tramadol at the same time, every 6 hours.  I know a stronger medicine may be coming along next.  To be honest, I would rather not be in pain because it wears you down.  I know there are side effects from the stronger drugs so I will deal with them as they come I guess.   Meanwhile, I am having lots of visitors and things to do.  I am thankful again for dinners being brought to the house because planning and cooking dinners is not my thing.  I eat very little but often during the day.  Still get hungry and still get thirsty, so that is a good sign😃 
     I would like to share with you what Ruthie wrote on facebook this week:
     "Mom just had her hospice intake last week.  We are learning as a family all about the end stages of life and what to expect.  It's quite overwhelming mentally and emotionally quite honestly. Trying to learn how to manage her pain , how to listen to each-other and openly talk about death on this earth. I am thankful for all this time my Mom has had with us, but it doesn't make it any easier knowing this is what we have to look forward to.  Will she suffer long? Will she go quickly like they say pancreatic patients usually do? Will we recognize it? Today I met her sweet hospice nurse whom I happen to know from a Bible study she led my table  a few years ago!!! She was teaching my parents and me all about the comfort kit this morning --how and when to administer in the case of an emergency. 
     Did I ever think I would be learning how to draw up morphine for when my Mom is in pain that's intolerable or give something for hallucinations? How can my saintly mother go through this sting of death.... How Lord? Then.....our nurse put her hand on my Mom's arm and said...."but you're not going to be worrying about any of this because you're going to be partying with JESUS!!"  All of a sudden it was as if the Holy Spirit just made this all real to me.  I don't know what life is like after this life here on earth.  I just know what I believe the scriptures say is TRUTH .  NO more pain and No more suffering! I have to have faith in what I can NOT see, feel, or touch.  My prayer right now is that all my family and friends have this same kind of Peace.  Will we grieve? of course! Will it be hard? absolutely!  Please pray for my Mom and for my sweet Dad and us kiddos! We sure have felt all of the support. 
       Mom  has decided to move their 50th anniversary party up to the 17th of August instead of their actual date of Sept. 20.  Pray please she feels good and can enjoy it!  We all are so excited to celebrate their 50 years of marriage !!! Mom has been planning it and I got the invitations printed today. 🎉'"  
       Miriam Zito Hermosa I love you more than you could ever imagine.  You have been the most Godly example of Christ to me.  You are my Mommy and always will be. I love you!"

Rev 21:4 He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away!
Proverbs 3:5-6 Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight."

Pain and Meds and Hospice Care

     It is Sunday morning and not like any other Sunday morning.   It is the first Sunday I am waking up in hospice care.   I guess it is like joining a "club".   There are lots of things to learn about the organization, the people working with it, the "benefits", and just living and dying in general.
     We have had wonderful visits from nurses, the social worker and calls from chaplains.  I am home and I will be visited as often as I need.  
     Now to the pain.  I have had more pain in the last week than ever before.  Our challenge is to find out what causes the most pain, what to "give" it to stop or subside, when to give it and how often to give it.   Of course, along with meds to help with pain come side effects.
     I have only been using Tylenol and Tramadol so far.  Tomorrow the nurse will come and we will discuss a routine to keep ahead of the pain which is the key.  Unfortunately I have liver lesions so neither of those meds should be used for long periods of time from what I understand!
     Meanwhile, I cannot think too far ahead with "planning" because we haven't gotten that far in our pain management.
     The night before last I barely slept because of pain.  Last night I did not have pain.   So, yesterday when I called the hospice 24/7 for advice, I asked if I could take Tylenol and Tramadol interchangeably.   She said it would probably be Ok for this weekend, but, I might need a stronger pain med.   My nurse visits tomorrow so that is reassuring.    Wonder what that med will be and what the side effects will be?  I guess one has a choice of little or no pain and feeling dull and sleepy in the head, or opt for pain and thinking better.  Right now, I don't deal with the pain very well and I don't like it.  And, what comes with opioid meds is constipation...then you have to take something for that!   Whoopee!!
     Along with the pain there seems to be a lot of bloating and painful gas after I eat no matter what I eat, so I have started taking Gas X, 180 mg.   Seems to help but you are only advised on the bottle to take it twice a day.  So, I am trying that too.  O course, I continue with small portions throughout the day!
      The support and care that the hospice folks give is very reassuring.  I am so thankful for the faithfulness of my family to my condition.  My husband is most caring and devoted, but sad at the same time.  
      "In all your ways acknowledge Him [the Lord]  and He will direct your paths."   Proverbs 3:6

All signed up with Hospice

     The word hospice does sound depressing and negative  but after our meeting today with 2 wonderful ladies, it doesn't sound so depressing as it did before I found out how caring the people are and how the future may or may not be for me.
      Life goes on and I go on.   So, as of today, I am part of  Centra Hospice of Lynchburg.  I will be visited by a nurse and whenever I have a question or concern or pain that I cannot control, etc, they are a phone call away among other things as help is needed!
      Meanwhile, I have a very supportive family, supportive friends from our church and church's ministry  and friends from near and far who are praying and helping with kind thoughts, words and actions!
      Thinking about the negative aspects of dying cannot be part of my mind frame right now, so, I will be thinking about short term future activities like going to the beach for a few days and helping planning for our 50th wedding anniversary party on Sept. 21!  SAVE THE DATE  
     After that it is birthdays in September and October.  Wow, and then there is Thanksgiving and Christmas again😃
      A favorite song I loved to sing is an "older" version of "Give Me Jesus".   It is called "In the Mornin' When I Rise", a "spiritual arranged by Charles Ives.   
In the Mornin' arranged by Charles Ives

Another more "modern" version of this song that is beautiful which I found on the internet this AM is "Give Me Jesus"  arranged by Fernando Ortega.
Give Me Jesus Arranged by Fernando Ortega

Oncologist Appointment, July 22, 2019

      I had a good appointment with my doctor.  Our dear daughter-in-law went with Agustin and me to the appointment.  Routine lab work was done including for the tumor marker!   Then we listened to what the doctor had to say about my CT scan and my future decisions.   We had a good discussion and Hailey took notes.  She really helped us since both Agustin and I don't always remember everything nor have time to write it down.
      Here are some things Dr. Paul discussed with us from Hailey's notes:
         *The CT scan showed that the lungs look stable. 
         *Liver has grown (?) and new spots on the liver.  The pancreas tumor is growing and the tumor is pushing on the small bowel causing pain in the upper left side.
         *Radiation is an option.  But, the Xray beams from outside the body into the pancreas could  have side effects during the treatments like nausea and vomiting, also bladder symptoms because passing through the stomach!
         * Doctor doesn't think the tumor markers are reliable.
         *The swelling (bloating) I have is probably air because no fluid shows up on scan.
         * Back to radiation:  They try to do the shortest course possible, maybe just 5 days.   It would not add any length of life, only to help with pain.   To set up for radiation takes several weeks so if I want that, I need to start soon.
        *The celiac nerve is right by the pancreas and that is what causes the pain!
        *With hospice. Don't wait til the last minute.
        *I will stay with Dr. Paul [forever]😊
      We discussed medications for pain.  I take Tylenol now but the next med would be Tramadol.  I asked if taking Ativan and Tramadol together would be a problem because they are both sedatives (?)  She said maybe just take half the ativan when taking Tramadol.  I only take Ativan at night anyway, so, sedatives, in my book, would be fine:)
       Dr. Paul told me it was good I still had the port in place since later on pain meds, like morphine, can be administered at home with a pump that I can use myself!
       She said my liver tests are OK so still OK to keep taking the Tylenol for now.
          *Hospice will call me to make an appointment to come to my home to discuss everything.
          *I should keep taking the Creon (pancreas enzymes) to help digest food.    Fat is the hardest to digest but starch, pasta, etc easier on the pancreas. 
        So, this is the "report" from our notes.
        With all this being discussed and said, I have a road ahead that doesn't look "pretty" as I heard once a good friend tell me when he was telling me about his Parkinsons'!  
         Now,  I need to focus on the part of taking each day as a gift and continuing my "journey" here as long as possible....hoping even to make it to our 50th. wedding anniversary to be celebrated Sept. 21, 2019 and to a few days at the beach with Margie and George the week before🙏
          Meanwhile, trusting God to get me through this and also my family I need to focus and pray on a special verse in the Bible:
            

Lamentations 3:22-24 The Message (MSG)

God’s loyal love couldn’t have run out,

his merciful love couldn’t have dried up.

They’re created new every morning.

How great your faithfulness!

I’m sticking with God (I say it over and over).

He’s all I’ve got left.

       Great is Thy Faithfulness ~ Mimi & Carlease audio
     
           

An A Fib Episode last night

    Of all things, as I was comfortable in "my chair", starting to watch my movie episode on "Bolivar", I was "craving" some chocolate ice cream.  Got it, sat down again, ate it and immediately started having an  Atrial Fibrilation episode!
     I have not had an "episode" in almost 2 years from what I remember, so I really don't know what "triggered" it except some lifting I did with moving some music boxes around for several hours  the day before yesterday and sorting old music.  Who knows?
     Anyway, the "episode" hits me like I think I am having a heart attack.  I am never really in irregular heart "rhythm" unless I have an "episode" whereas AGustin can be in a fib without feeling anything much of the time I think.  We both take Eliquis!
     As the night progressed we took my blood pressure and pulse which was quite high and the pulse very high and irregular.  The "episode" makes me feel weak, chilly and just worn down completely.  I laid in bed and prayed.  I also took a metoprolol pill, low dose, after about 20 minutes which may or may not have helped.   Later I took my usual low dose Ativan and then, still not able to sleep, took my Tylenol because a little abdominal pain was joining the frustration!   I tried other recommended "solutions", like bearing down, but to no avail.   Just had to wait it out and, heaven forbid, not call the rescue squad or go to the hospital.   No way:):):)
     Lo and behold, I woke up several times during the night and finally, my heart was back into "rhythm".   Thank you Lord and thanks to my very faithful family for praying for me when I texted them very late at night.
      By the way, these "blogs" also help me keep track of health events in my life as I go through them.
      Today I am recuperating and tired, but thankful things are back on track for this old lady:):):)

Thoughts on the next "phase"

     As many know, the "next phase" is slowly or rapidly approaching.   What is the next phase and what will it involve?   I don't know, but I am taking each day to rely on God's opening my mind and heart to prepare mentally as best I can.  I am not afraid as I was when I first "heard" the news.
     Last night, as I went to sleep, I started reflecting on the phrase, "I am the resurrection and the life....I googled it to find out where and when it was said.   It was said by Jesus when he was where Lazarus had been dead for 4 days and Mary and Martha had sent for Him.   
     This is what the verses say in John 11:

 25 Jesus said to her, “I am the resurrection and the life. He who believes in Me, though he may die, he shall live. 26 And whoever lives and believes in Me shall never die. Do you believe this?”

27 She said to Him, “Yes, Lord, I believe that You are the Christ, the Son of God, who is to come into the world.” 

     So I was reflecting on the part that says, "though he may die, he shall live."   That part is the part that we believe but don't know what it involves except what is revealed to us in the scriptures.
     Some people have written about the Near Death Experiences, and how they "saw" or "dreamed" or actually were surrounded by another realm, but came back to life to tell about it.  I have never had such an experience.  It rather "confuses" me but at the same time, who am I to doubt what and how God reveals to some people and not to others.
     All I know or believe is that "though he may die, he shall live, and whoever lives and believes in Me shall never die."   Rather a reassuring statement for me and I will continue to ask God for these assurances within my own mind and heart.  Before I was in this particular part of my life, I found this part hard to grasp or believe, but God is helping me.
       I would hope that these assurances would be in the hearts of each family member and friend who will have to do his/her own seeking and searching for God in their own lives as their time approaches with or without warning.  And, I would hope that each person who grieves when I go, will remember that part about "shall never die".  I also remember that Jesus says, before His death to His disciples, "I go to prepare a place for you....".  We have heard it all our lives at Christian funerals but, really believing it when I am faced with leaving this earthly body is the reassurance when God is preparing me for this "next phase".  I guess I am not so much worried about the pain now that will come  when I think of what is coming!
      With love and thoughts for everyone who reads this, "May God be with you as you seek Him"!

Deep Thoughts on the Latest Report

      Friday was my CT scan to determine if the Lynparza is working the expected "miracle" on the tumors.   I received an early phone call from my doctor that it was not.  That the tumors in the pancreas and liver were larger but the ones in the lungs were the same.
I was almost asleep for my afternoon nap when the call came from Dr. Paul who told me this.  We talked about it with what questions I came up with at that moment in time.  It was also the afternoon of our son's fortieth birthday celebration which Hailey had planned  for that evening. 
      This call came about 1:30 PM.   I wasn't really shocked but I was saddened.   I asked her several questions that came to mind like, "what is next?"; "how will things be?", etc. 
      She told me that she wanted me to know before anyone else read the report since she knew I make arrangements to pick up the report as soon as it is ready!   She told me that, to her disappointment, there was nothing more she knew to do or try at this time.  She told me that it seemed that my pain was related to maybe the tumor from the pancreas (in its' location) was pressing on my stomach thus causing the pain in my upper left side.  She told me that probably things would get worse as far as pain and swelling.   She asked me if I wanted her to call hospice before she left for the week off she had next week, or wait for our next appointment (July 22).   I asked her if it was that urgent that it couldn't wait, and she said, oh no, you can wait.  I said, "good", I will wait.  I told her about the party that night and she suggested I not tell anybody until the next day...but I had to tell Ruthie since she was questioning me about picking up the report!  
        So, that is the latest.  I have not taken any more Lynparza according to her suggestion that they don't help.  Of course, the big question from my family is, aren't they helping a little with the lung tumors???    I have no answer for that except if one is in hospice, one cannot be on any chemo!
         I must admit, after I heard the "news" on Friday afternoon, I was lying in bed for the nap, and cried because this is the first time I am experiencing the idea of leaving my family and leaving my life here as it is now. 
        So, as I cried, calling out to God,  I prayed that He would help me have peace in my mind and heart.  I then fell asleep for the nap and woke up with hope, excitement for the party and very well "hiding" the latest news from Agustin, Kathy and Paul.
      The party was wonderful for me.   So enjoyable seeing old friends and family.  Lovely "event" planned for a wonderful occasion by our "star event planner"....Hailey Hermosa👍 
       So, with this in mind, there has been a lot of soul searching on "the next chapter"....how long will it be?, how much pain and disability will be involved?
       I know I will have great visits and security and love poured out to me.  I also know we will uphold each other as we  cry and we cry together. 
       I plan to really take each day now as a celebration of life and now, closer maybe than I know, the life to come.
       I have been reading scripture having to do with things I really don't understand but is still, nevertheless, in the Bible written by those prophets and disciples who were inspired to share.  I don't understand it all but, I do understand and believe God has it all, that He will share in His timing and in His will.
      Meanwhile, I watch and hear about others' journeys as they live through pain, but they still live here for a reason.  Some are young and have young children, some are older, like me....and they live.  I intend to live in God's will as long as He permits.  I don't want to die YET, but now it is up to Him and my own body with the "battle" to live for awhile longer.

2 Corinthians 5:1-4,8-9 New Living Translation (NLT)

New Bodies

1.  For we know that when this earthly tent we live in is taken down (that is, when we die and leave this earthly body), we will have a house in heaven, an eternal body made for us by God himself and not by human hands. 2.   We grow weary in our present bodies, and we long to put on our heavenly bodies like new clothing. 3.   For we will put on heavenly bodies; we will not be spirits without bodies. 4.  While we live in these earthly bodies, we groan and sigh, but it’s not that we want to die and get rid of these bodies that clothe us. Rather, we want to put on our new bodies so that these dying bodies will be swallowed up by life. 

 8. Yes, we are fully confident, and we would rather be away from these earthly bodies, for then we will be at home with the Lord. 9. So whether we are here in this body or away from this body, our goal is to please him.

Time for another post

     It is Monday, July 8, 2019 and 40 years ago, I was living in Venezuela, SA with our family, Kathy, Ruthie and Agustin.  I was visiting my parents here in Lynchburg, VA for the summer while I was very pregnant with our son Paul who was born July 12 (1 AM) at Virginia Baptist Hospital just 40 years ago this coming Friday.💓🎂
     My life at 77 is still surviving in God's care and provision in spite of the inoperable pancreatic cancer diagnosed in 2016.  All I can say is Praise the Lord for this quality of life all these years.
     Now, for the update since the last post.
      I stopped taking omeprazole after about 8 days. I still take faithfully my chemo pills!   I don't think the Omeprazole has helped anything as far as pain.  I have been very careful these last 2 weeks with what I eat and how much at a time which is quite a challenge for me because I enjoy food that could be influencing the pain.  REally, eating small amounts at one serving and chewing well is no big deal if you keep your mind on it:)
       I use Tylenol which relieves as long as I keep the food intake in small amounts and eat often.   I will have a CT scan on July 12 (Paul's birthday:)   This may tell some new or old things, but I am not really worried about what it shows.  I just would like to know what causes the pain and then we go from there:)
     I still look back to an old hymn which always gives hope to my life "The Solid Rock" .  I am so thankful that Agustin video-taped songs over the years that inspired me as I sang them and now as I listen to them.  I am not talking about my singing voice but talking about the inspiration they gave and give as I listen to the texts (now-days called "lyrics":). 
      I still appreciate the old hymns which carry our faith and hope in such meaningful poetry based in scripture and faith!