Saturday, April 21, 2018

The Chronicles of Ascites

August 15, 2010 by  
Filed under Patricia's Journey

It is obvious I have reached a place where I haven’t enjoyed writing about what is happening.  Not sure why.  One voice says it is important to keep the blog up to date at least weekly for my angel friends who are praying and watching over me and another voice says “if you don’t feel like writing, don’t write.”  As I sat with this, the answer for me is to write every week even if it’s just to say “hey, I’m Ok.  Not having fun, yet I’m Ok.”  It means letting go of the thought that each blog must be a literary masterpiece.  A Cliff’s Notes version can suffice.

On Sunday, August 1, my friend Jim picked me up from Laurie’s home after a stay of nearly three weeks.  With the mouth sores healed and the itching minimal, I felt ready to be in Honolulu yet sad to leave my family.  Still fatigued, I was looking forward to a break from bodily functions gone awry.  My abdomen was becoming distended yet that seemed minor in comparison to what I had just moved through.  The appointment with my doc was Thursday August 5.  By the time this arrived, my abdomen was distended to the point that you would have thought I was seven months pregnant.  It was uncomfortable and difficult to eat more than a cup of soup at a time due to my stomach being crowded.  When the doc came into the room, it was a surprise to hear him say I should take a couple of weeks off before starting his recommended oral chemo regimen.  Then I showed him my pregnant belly.  That changed everything.  After examining it he said “I think it’s fluid in the abdomin. It’s called ascites.”  That seemed to set into motion a worst case scenario for him that cancer had spread into the abdominal wall.  He ordered a CAT scan and wanted me to begin the oral chemo immediately.  He wanted the scan to confirm that it was fluid and to check for cancer metastacized into the abdomen.  I left deciding against beginning any new chemo.  When I read further on ascites, it is the result of liver damage and its inability to produce enough of the protein albumen which allows the cells to hold their fluid.  The decreased albumen allows the cells to leak their fluid into the abdominal cavity.  As the liver heals, the fluid stops leaking.

On Friday, I talked with the doc about my increasing level of discomfort.  He said he thought we could wait but if it became too uncomfortable I could go into ER over the weekend and they would scan it and drain it. By Saturday, the next day,  it had become too uncomfortable to tolerate further.  There wasn’t any way I was going to wait in this condition another week for a CAT scan and then another 3 days for results to confirm it was fluid and then for a solution.  My overriding concern was the small amount of food I was able to intake. Jim accompanied me to Kaiser where they performed a procedure to drain the fluid in the abdominal cavity.  We were there from 9:30 am to 5:00 pm.  The procedure began at 1:00 pm.  At one point, I had three doctors in my room discussing needle sizes and how to proceed.  They shared the procedure isn’t done very often in ER.  Oh.  Uh oh.  Both Jim and I share an aversion to needles.  The nurse thought he should leave the room.  ”If you pass out, then I have two patients instead of just one.”  He decided to stay seated next to my bed, looking down at the floor, holding my hand.   Ok, gripping my hand…really tight.  Less than a liter of fluid was drained yet it was enough to provide some relief from the pressure build up in my abdomen.

On Sunday, it was obvious the abdomen was filling up again with fluid.  On Wednesday, August 11, I decided to go into the hospital as an outpatient to have a drainage performed by a doctor who’s expertise is in this area.  What a difference!  I was there three hours and he drained approximately 2 liters of fluid which is about four pounds in weight.  I was doing the happy dance and ready to eat the first thing I could, which was a tuna salad sandwich offered to me by my nurse as I lay in recovery for 30 minutes.  My friend Lisa exclaimed “Wow, you got a free tuna salad sandwich at the hospital!”  Yeah.  Free, we laughed.

Since the procedure, the fluid has slowly leaked back in yet at a much slower rate.  By Tuesday or Wednesday I’ll be ready for another drainage.  As my liver regenerates, there will be less and less fluid and the treatments can stop.  Until then, they can be done every week if necessary.

I had an expectation that after the skin lesions and mouth sores, it would be all downhill and I would be free of any new fall out from the chemo or liver damage.  Silly me.  Setting myself up with expectation also sets myself up for disappointment when it doesn’t go the way my ego decides it should.  More surrender to allowing the experience to be whatever it is to be.  There might be more speed bumps to slow down for; I don’t know.  Having never been on this road before it is best to keep my eyes directly in front of me and take each new thing as part of the experience.  Not good, not bad, not fair or unfair.  It just is what it is.  It is all the same to God.  It’s only the ego who judges it.

My skin is still itchy and a prescription helps keep it from being intolerable.  So far there are three opinions as to the cause: one doctor said it’s from the chemotherapy, another nurse said it’s a result of liver damage and my doc doesn’t know the cause except  he doesn’t think it’s from liver damage.  The fatigue, a result of liver damage, is ongoing and I have learned to relax into it more and more.  It means my days are slow and if you ask what’s new, I might say I was able to walk up a short flight of stairs today.  Sleep is screwy and I will take it anyway it comes.  Right now my body is on a 4am – 12 noon sleep schedule.  This too shall pass.

My hair has not begun to grow back.  By now, I should have about an inch of new growth.  When I questioned a doctor friend, she told me my hair might not grow back.  She said my body has been so shocked by the chemo, and it simply may not grow back.  It was a matter of fact statement that left me reeling.  Lengthy pregnant pause.  ”Don’t tell me that.”  In that moment, I felt as a child who had done everything she was asked to do and only wanted one thing as a reward: some hair on my head.  Screw the ice cream or gold star.  Just give me a little bit of hair.  I deserve it, dammit! The tears began to flow as I tried to embrace my remaining years as bald.  I was equally angry and sad.  Had I been able to accept my baldness knowing it was temporary?  There was grief for the woman I used to be physically.  This experience has forced me to shed every attachment, every aspect of how I have seen myself physically that has been an illusion. We can say we know we’re not beautiful because of our hair, yet how many have this belief tested?   All that isn’t the real me has been burned away so I can see anew through the eyes of my soul and not my ego.  It is about how to stay connected to God and stay who I really am regardless of everything.  It is the same challenge as someone losing their legs from a war wound or their sight from diabetes. How to hold onto your heart.

This business of hozho. The way I understand it … I‚ll use an example. Terrible drought, crops dead, sheep dying. Spring dried out. No water. The Hopi, or the Christian, maybe the Moslem, they pray for rain. The Navajo has the proper ceremony done to restore himself to harmony with the drought. You see what I mean. The system is designed to recognize what’s beyond human power to change, and then to change the human’s attitude to be content with the inevitable.

– in Sacred Clowns‚ by Tony Hillerman

God tells me this is what healing can look like.  It can look messy.  It also feels like I am at the place where most people give up.  No hope from their doctor, no personal relationship with God, and a body that seems to be giving out.  I also believe that even with hope and God, it can simply be the Divine path for a person to exit this life.  It is by the Grace of God that I am here, surviving and moving into thriving.  Please put out prayer requests in every direction you can for the healing of all disease processes in my body, the healing of the cancer and for the complete regeneration of my liver.  The next two months seem very important.  The power of friends and prayer and friends who pray.  You.

On this day of your life, I believe God wants you to know…

.…that to find beauty in everyone you must see beauty in everyone, then announce that you see it, for in announcing it, you place it there intheir reality.

Do not miss a single chance — not one single opportunity — to tell someone how wonderful they are, how special they are, how important to you they are, how incredible as a person they are, how beautiful they are inside and out. Do not miss a single opening in which to insert such a comment, genuinely felt and genuinely meant.

Make it your life’s mission today to bring to the attention of another just how extraordinary they are. Say it. Say it. SAY it. Their heart is waiting to know that their own best thought about themselves can be believed.

~Neale Donald Walsh

The gratitude I feel for your presence in my life is beyond words.  Quite simply, I would not be sitting here typing this blog without your continued and constant love and support.  You are teaching me more deeply how to love, how to give and how to receive.  You are in my life, and I in yours, by Divine appointment.  Thank you, God.

And, yes, I have made an appointment for a second opinion with the head of the oncology department at Kaiser.

Alexander's first day as a Freshman!

Cyndi & fiance Josh came to Oahu in July for an early honeymoon


9 Responses to “The Chronicles of Ascites”
  1. Christine says:

    Gods will be done, on earth as it is in Heaven. Love, prayers and all the light of the heavens are with you my friend. I see you in my minds eye and feel you in my heart. And yes, please just say Hi even if nothing else fits :)

  2. Jeri says:

    We will all be praying today and everyday for your spontaneous remission!!

    We are all so grateful that God has healed you…}}

    Love you,
    Jer xxo

  3. carrie says:

    As much as I look forward to your blogs…I’m all for the voice that says “if you don’t feel like writing, don’t write.” If it gives you more joy and energy than it takes, by all measn write baby, write! My heart is full of love and good energy being sent your way. I wish you peace & comfort!

  4. Leslee Joy says:

    I pray for you often and shed my tears and wish I could take some of your pain away. You are a wonderful human being…and yes BEAUTIFUL JUST BECAUSE…not because of your hair. I love you!

  5. Lisa Waltman says:

    As you know I have continued to follow your journey through a connection with my sister, Leslee Joy. At each reading I am amazed at you and the power God has given you to reach through your pain and dissappointment, to touch each of us so deeply. I have kept you in my prayers and thought of you so very, very frequently…I recently sang a song at church that spoke to me and often while at my desk at work, I re-read the words from the sheet of paper upon which I copied these words:
    “At times I may grow weak, and feel a bit discouraged…knowing that someone-somewhere, could do a better job.
    For who am I to serve You? I know, I don’t deserve You. And that’t the part that BURNS in my heart and keeps me hangin’ on.
    I ask you: “How many times will you pick me up, when I keep on letting you down? Each time I will fall short of Your glory…How far will forgivness abound????” And you answer: “My child – I LOVE YOU, and as long as you’re seeking my face. You’ll walk in the power of my daily sufficient Grace.”
    My prayer for you beyond your physical healing, is that you feel His presence today…more than yesterday and yet even more tomorrow. I lift up my prayers over the Rocky Mountains I’m looking at, to Him, for you.
    Sisters in Christ, Lisa in Colorado

  6. Jan Johnson says:

    Ditto, Ditto, Ditto, and finally Ditto! It has all been said above and I am 100% in your corner Patty! You are the best. After I talked with you I pulled out my thesis and reread the acknowledgement page. And there you are, my friend who guided me to get me where I am! Love you more than all the letters and punctuation in that thesis + all the blood, sweat,tears,and fears!

  7. Michelle says:

    YOU are so extraordinary!!!! Sending lotsa of love and the vision of bright white light.

  8. Alexander (her son) says:

    Hey mom i don’t usually comment on your posts but i just wanted to know if your any better because this story is a little scary. Dad said you probably wont answer your phone or you will be too tired to talk, if so just send me a text.

  9. charlene says:

    I love you Dear Patricia. I send you my prayers. You have touched my heart deeply and left an imprint of love.

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