Saturday, April 21, 2018

How to scrub a heart

July 22, 2010 by  
Filed under Patricia's Journey

All of our experiences are good, even if we seem to fall into a black hole. For me, these experiences drive me further into this work and keep me motivated to heal my mind. Don’t resist any of it. To resist is to say it should not be happening. But nothing is wrong. The world gives us everything we need for our awakening because our thoughts have brought it all into being. Often our greatest leaps forward spiritually are made at our most difficult times. These can offer us a certain kind of grace even if at the time the experience feels ruthless. Our greatest advances are often made when we are brought to our knees. Sometimes it seems this is what it takes. If we see these times as opportunities for us to go deeper into our pain so we can learn about it in order to let it go, then these events in our lives truly become huge gifts. When we accept that we don’t know how to do any of this anymore, the ego is unhinged and we reach a true state of humility.

As my friend Margie said, “when your blog is quiet, I take that as a silent request for prayer.”  Thank you for all of your prayer support over the past month as I have navigated new waters.  If I had the energy to write a blog it would have been something like “Feel too bad to write. Pray.”

When I last wrote on June 30, I was managing the fever and then the itchy skin and believed the itchy skin to be subsiding.  What ensued next was without a doubt the most physically demanding and painful period I have had since this experience began.  The purpose of documenting it here is to serve as a record for the time when I am actively supporting others on this journey…and, at times, for your personal entertainment :)

The itchiness continued and new lesions seemed to erupt on my body overnight.  Should anyone share with me in the future they are experiencing itchy skin as a reaction to medication, they will have my immediate attention and empathy.  There were times when the itching and scratching were so crazy making, I would sob.  Hydrocortizone cream gave some relief.  Predinoze was prescribed for five days. On July 11, my mouth developed sores that made it impossible to chew or swallow solid food.  Another minor and very inconvenient side effect showed up as well (enough about that.)  I had not slept through the night in several weeks.  Laurie picked me up for the Tuesday July 13 appointment with the oncologist and with the intention to take me home with her for some one on one TLC.

When the doc saw me in the exam room, he was visibly shocked at the condition in which he found me.   My opinion?  He knew in that moment he may not have been on top of my case in the previous few weeks.  He was not made aware of my rash until the week prior, a full two weeks after it began and I called in for help.  As he examined me, he didn’t know what the rash and the mouth sores were from.  He said it could be an allergic reaction as I previously thought or it could be my body reacting to the Taxol chemotherapy. He was very concerned about my liver, as the whites of my eyes were yellowing and this could be a symptom of liver damage.  Taxol is processed through the liver.  We did additional blood work directed at the liver, as well as a chest x-ray because he heard me cough (came back normal).  He prescribed a narcotic pain reliever to aid the mouth sores and a mouthwash to numb them.  My white blood cell count was the lowest it has ever been. For this he prescribed daily injections of Neupogen for five days.  This is a commonly used white blood cell booster. That meant Laurie and I would receive instruction from a nurse on giving home injections.  By Friday July 16 I had my first pain free, sleep through the night in a month. Although I wanted to resist taking the narcotic pain reliever for the mouth sores, this was one time where I made an exception so my sanity could be restored.

Nurse Laurie learning to give home injections

Slowly over the next week, the sores dried up and began to heal.  There is still a mild case of occasional itchy skin, yet nothing debilitating. By Monday, July 19 the mouth sores were healed enough that I could chew and swallow food.  I don’t know how to describe the amount of pain through all of this.  It was so much that I didn’t have the energy to feel sorry for myself, question whether I had it in me to keep going and if I wanted to keep going.  At times it wasn’t a day at a time, it was an hour at a time.  I stayed as close to God as possible, knowing it was the only way I would move through this.

Tuesday July 20, Laurie and I completed the last of the injections prior to meeting with the doc.  He was pleased with how I looked.  He said he believes the mouth sores were from a low white blood cell count.  And why wasn’t this connection made when I first presented the problem?  He began talking about his deep concern for the damage my liver has sustained from the Taxol as shown by the recent June 16 CAT scan.  This was the scan that also heralded a dramatic response to treatment.  Now it seems his primary concern is liver failure. Excuse me?  It has been five weeks since the CAT scan and you are now talking with me about liver failure after giving me two more rounds of Taxol after the June 16 scan?  He can’t tell me how much necrosis the liver has sustained.   When Laurie mentioned the liver is a regenerative organ, he said “not in your case.  There is too much damage.”  Oh, I’ll be sure and tell God there is such a thing as too much damage for Him to heal.  The liver blood tests from this visit are already showing improvement from the prior week’s tests.  The white blood cell count has responded to the booster injections.

“How do you know when you are too toxic to take anymore chemo?”  I asked.  He said “When you can’t get out of bed.  You’re not that sick.”  I asked doc what he thought about alternative options.  He replied “I don’t believe there is alternative medicine.  There is either proven or unproven medicine.  Nothing else.”  His proposed plan is to switch to an oral chemotherapy drug that is processed through the kidneys to prevent further liver damage…and we should begin Monday July 26.  My reply was simple.  ”No, I am not starting anything on Monday.” One of his last lines to me was “I hope your liver holds out.”  If this is what you consider proven medicine, it’s time to look deeper into the unproven because yours has hit a wall.

Laurie had definite opinions regarding the doctor’s attitude and bedside manner.  It was a great support to have her there with me, to hear what I was hearing and garner her perceptions.  I am still in her home, in her care, resting and loving being with a family.  Although there aren’t official adoption papers, I am Patricia Rapp Tueller.  After a month of constant pain and little sleep, my Guidance is to remain here, regain my strength, then return to Honolulu.   That could be another ten days of cinnamon rolls and homemade meals and loving friendship.  Darn.

What have I learned from this?  How to be a mindful eater.  When I was able to take in some solid food, I discovered an old habit to eat very fast, yet I couldn’t.  Bites needed to be small and chewing was slow…and I am enjoying my food more than ever.  The other awakening was about home.  It could be said I don’t have a home, in the sense that we think of home.  I have places I stay.  Last week it was clear that home is simply where my shoes are.  Feeling at home with who I am and at home with God, my mailing address means nothing.  Wherever I am, I am home.

What do I know for sure?  I saw clearly on Tuesday western medicine isn’t sure of anything when it comes to cancer.  I saw clearly God and I will be making the decision for what I will do from here.  I know before this year’s end, I will be writing blogs about topics that don’t mention chemo or pain.  Today, I started listening to Christmas music to keep me focused on the joy of seeing Alexander at the holidays. Until then, all of the challenges are scrubbing my heart as the Buddhists say.  Or as one of my brothers would say, “putting hair on your chest.”  Well, I’d rather have it on my head, but any hair any where is a good thing.

Waikiki Sunset by Lisa


9 Responses to “How to scrub a heart”
  1. Sarah says:

    Oh my darling Patrica,

    I am equally parts so incredibly sorry that you have had such a rough time, incredibly grateful for nurse Laurie and incredibly incredulous (can you be incredibly incredulous?) at that stupid man’s ignorance, blinkered view and, to be honest, questionable level of care.

    Even if he doesn’t believe in alternative medicine, it’s obvious his patient does – so what’s wrong with at least having a sensible discussion around the topic? Honestly, it’s ‘i’m right, you’re wrong’ attitudes like that which start wars! You go girl – show the ignoramous that there IS a place for treatment that doesn’t fit into his predetermined ideas of what is the only way!

    As soon as I stop stomping around my kitchen in indignant outrage i’ll be sending you love and light!

    Outraged of England (aka Sarah)

  2. Jeri says:

    How frustrating. I’m so sorry you’ve been in such pain. May I be angry with regard to your Doc’s lack of professional involvement? We can all be distracted, not on cue. But, he doesn’t have that right in my humble opinion. You’re a wise woman Patricia. And I pray everyday for your spontaneous remission.

    Your adoptive parents are blessed to have found you. Truly. :) hehe

    Love you….}

  3. Jackie Hinton says:

    Dearest Patricia,

    Your reactions to your healing and pain are inspiring. I love who you are and how you approach life and the challenges you deal with. You are an example to us all. My dearest cousin and my best friend from birth has now been told by the powers that be in Houston that she should begin end of life counseling and that the cancer in her body is incurable. I will be sure to share with her your words that your healing will be between you and God. That was the only possibility in the first place! I love you and appreciate your entire thought process. It is so right. Jackie

  4. Marlana Monet Smith says:

    OH Patty, I do Love You So Very Much! Congratulations Darling! NO MORE POISON!!! YAY! YAY GOD!!! MY Prayers are with you each day, and I send you my Loving energy constantly. You have inspired so many of us my beautiful friend…by your Love, courage, words, devotion, Honesty, Wisdom, and your deep desire to help any person that may come along and walk the path you have just walked! Bless you my Beloved friend and “Soul Sister” I Love You.

  5. Jan Johnson says:

    Well no wonder you were SOOOO on my mind….and pumped up prayers while hoping you were running up and down the beach. As an advanced practice nurse, I am so embarrassed of the medical profession when I hear stories like that. Do you know at CU, nurses teach the courses in bedside care. Not that you need to hear that right now but after bopping this guy on the head (pacifist that i am on occasion)I wonder if he wasn’t mortified about himself. I have a thought about the itching and wonder if it isn’t related to the liver problem at the moment. Back in the old days (and i mean old—we’re talking 1972 I don’t think you were born yet—you don’t look old enough :-) ) when I did blood and guts before switching to heads, itching seemed to be common with people with liver problems. I will pray for tolerance and reduction. Am so glad you are surrounded with loving abundance–what a journey you have had. I so wish I wasn’t so far away…my spirit connects with yours and please have Laurie wrap her arms around you for me. As Mother Theresa said “we shall never know all the good that a simple smile can do. :-) . “People are like stain glass windows. They sparkle and shine when the sun’s out, but when the darkness sets in, their true beauty is revealed only if there is light within.” Elizabeth Kubler-Ross. To your beautiful light–Love, love, and more Love, Jan

    • Patricia says:

      I love you Jan and look forward to you being out here to share some of this journey and paradise with me.

  6. Karen Mackey says:

    Dearest Patricia,
    May God bless you dear one. We share a very dear friend. He will not leave your side, his strength is your foundation. You are an inspiration to all. My thoughts and prayers are with you always. You are not alone on this journey, may the Christmas music be a constant soothing and strengthen you.
    Prayers, thoughts and sunshine hugs from Nebraska.

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