And a Time for Goodbye

My ten day allocations of living shrunk last week when my team of doctors decided that I was no longer eligible for chemotherapy. Chemotherapy being my only active tool to contain my cancer which seems to be invading more and more of my body. I entered in-home hospice Friday.

I have yet to sing the praises of hospice. The main difference is that I am at home (nice) and that Mike is now a deputized nurse (not so nice.)

I don’t feel good. It hurts to talk (ng tube goes down my throat to extract fluids from my stomach into a cute little bucket.) I have received no actual nutrition since i entered the hospital. Nothing can stay in my stomach with out me throwing up. And nothing can go beyond my stomach. There is no detente in site.

I wont pretend to keep blogging much. I think the above sums up my trajectory. I will soon die. I am not scared but I am truly sad.

Thank you for finding this blog, passing it on. Perhaps it will have a future in another’s hands.

I am not encouraging visitors. I find this a time for quiet reflection.

Much love to all and most especially my care team that formed the night of my diagnosis and has stood by me through it all. And my beloved partner, always – Mike Edera.

Goodbye, marcy

Dreaming in Ten Day Allocations

A Brief Update from Marcy

Phew…..my 2015 roller coaster ride continues. In early April intensifying pain turned into non-stop vomiting indicating a bowel obstruction. I was admitted to OHSU, a teaching hospital where courageous bedside manner was being tested as I was informed on the severity of my status. One option presented, being “sent home to starve”, sent my support circle and I into an advanced stage of grief. The hospital advised waiting to see if my body could self-heal through fasting and no liquids to aid bowel recovery.  (Please Note: I have since come to understand that being “sent home to starve” is harsh language for a common way to die. As the organs begin to shut down due to cancer, the body no longer wants or needs food and then water leading, in fact, to what can be a very peaceful death.)

You Need Your Bowel – outer pink.

As my blog reported on April 7th (With Love and Luck) I did recover from this bowel obstruction but I remain at higher risk for more. As has been true for all of 2015, I continue a downward slide. It hurts to walk, so I don’t walk. I feel my cancer despite my opiate patch.

When first diagnosed I was informed that I needed to learn to live in three month increments. I did. I feel like my new mandate is to live with ten-day increments (the time it would take for a bowel obstruction not to self-resolve) and this feels hard. I need to think about every thing that I put in my mouth. Is it low fiber? My farmer husband is aghast that all that he grows and prepares for me as organic and full grain is now condemned.

White bread only!

I continue to find some amusement in the ironies of life.

Palliative care is now an active team member. They are great. They also advise me against hospice since in hospice I can have no chemo treatment and I would die fast. I am still opting for life.

I had a few days in the hospital where I had NO PAIN. I felt stable for the first time in 2015. I work towards that stability and then rebuilding all the strength I have lost.

This optimism is eased by my latest ca 125 showing a startling drop from 173 to 117. For days I refused to open any other messages from OHSU fearing they would retract the numbers.

Who knows….?  My body, my cancer and modern science rules.

Given my current weak status and high need for sleep, I am NOT keeping up with email. If you email me, hold your queries (please!) and instead just give me YOUR update. My blog will do its best to keep you posted.

If you live in the Portland metro area and want to help with daytime transportation or food support, let me know – again most of these helpers will get low contact with me – just talking tires me more than I can afford right now. I am officially dull but eager for your monologues.

Much love, marcy

Love and Luck

Pain was my companion for all of January, February and March of 2015. Extreme, escalating and new types of pain brought me to the ER early April 2nd. Today, April 7th, I was cleared to order real food! If I can keep it down, I can go home later today or tomorrow. A Fentanol patch now experiments with keeping me pain free for the rest of 2015.

The week was full of gloom and doom – dire language from docs predicted a direct pathway to death. My friends and I cried a lot as we planned my burial, memorial and more.

Yesterday four liters of fluid were removed from my belly. No doctor expected that I really had ascites. I pushed for an ultrasound. With ten pounds of ascites removed, my intestines could move to their real homes. My bowels can breathe and re-inflate to do their job. I might just be back in the business of living.

Is this event a big marker on my path? Yes. But really, as always, it means I need to find a chemo that can work. I can’t stay alive with the volume of cancer I have.

So with love and luck, and hundreds of candles lit, maybe we can cheer the chemo on. Thursday I am happily re-ensconced in my chemo throne. Hoping yet realistic.

Thank you all! Love, marcy

Falling Off the Tightrope

I share a post below that my friend Holly did to a circle of close friends. I went to the Emeregency Room Thursday, April 2nd, early in the morning after my sister, a doctor in the Midwest made urgent calls to friends and me saying, “Go to the ER now.” Everyone scrambled to get dressed and I was out the door in five minutes, overnight bag in hand. All my complaints and moaning of the last few weeks neatly adding up to a bowel obstruction. As cancer expands it damages organs in its path.

I had enormous pain because what came into my system, food and liquids, could no longer exit. Below is the update as of two days ago. I have now been in the hospital four days with no food and just sips of water as we wait to see if my body can self heal. My first try at food may be Wednesday. Chemo is set for Thursday.  Warmly, marcy

Hi everyone,

I know you’re anxious to hear how Marcy’s doing – thanks for your patience.

Marcy is still at OHSU Hospital. She is stable and relatively comfortable, alert and very on top of her situation. That said, this is clearly the diciest her situation has been. A sudden downturn is possible at any time.

Marcy asks that you light a candle for her and focus your thoughts and well wishes and prayers on her.

Her doctors here at OHSU (and those consulting from the San Jose team) agree that continuing to wait and watch is the right course for her bowel obstruction. She will be in the hospital through the weekend and possibly for a full week as her bowels rest and – we hope – recover. If there are no further complications they agree that continuing her current chemo makes sense… her present situation is not a failure of the chemo, which after only one round hasn’t had a chance to prove itself.

Again, the hard truth is that the current chemo may not be beneficial even after additional rounds, or that other complications could arise.

All the more reason for us to continue to add our own positive energy in support of Marcy’s phenomenal life force and will to live.

Feel free to send Marcy photos of those candles. Email (Marcy@rop.org) remains the best way to let her know she’s in your thoughts (and keep her amused with snippets from your life).

With thanks for your love and prayers,

Holly
—
Holly Pruett
hollyjpruett@gmail.com
http://www.hollypruettcelebrant.com
503.348.0967