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

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Modeling Options

I ran across this quote and was quite taken with it. It describes what I know.

“Many of my friends will see their future in the way I handle mine.” (Said Barbara Rosenblum who died 2/14/1988 three years after her diagnosis with advanced cancer.) “For some reason I am one of the first to face death in my circle of friends. My living with death is a big moment for my community. It is significant.” Cancer in Two Voices

I blog to break my isolation but I also blog because I am living future realities. Maybe living my experience out loud will ease the journey of others.

warmly, marcy

Surviving Recurrent Ovarian Cancer

There is no recipe for staying alive with advanced, recurrent cancer – and ovarian cancer by definition tends to be advanced and recurrent. Alas. Luck seems to be the only constant in outliving the odds. My luck hasn’t seemed great of late as my first recurrence has involved a year of running through various chemos until low dose taxol brought me enough shrinkage and stability to start Phase One of a clinical trial at the University of Pennsylvania. I now travel cross the USA for treatment every two and a half weeks. Is it crazy to still feel so alive?

Why not feel alive?

I completed my fifth trek to Philly and second round of treatment this past week. Outside of the city being beastly hot, there are no riveting ups or downs to report. The thunderstorms that shut down all flights just as my plane backed onto the runway sucked but that is Mother Nature and my poor relationship with the gods of travel stepping in again. For an Oregonian, though, this new constant of daily thunderstorms most afternoons is its own form of excitement – Western Oregon averaging a mere three thunderstorms a year.

The routine is becoming just that. My sister, an emergency room doc and 18-year survivor of stage 1 ovarian cancer, travelled in to greet me. She is the big sister despite her smaller frame – 18 months my elder. Living far away with her own life of demands, our rendezvous in Philly allowed her to treat me to a vacation while holding my hand, at times literally, during treatments. As someone inclined to do it all solo, it was a lovely treat. Especially the finger to squeeze and the voice to soothe as the two vaccines to the groin searched out deeper lymph nodes to inject this time.

Vacation meant strolls and delightful meals out in Philly, the city beyond hospitals.

A sister meant no luggage to schlep. A sister meant all needs all the time were met. A sister meant no need to explain or entertain, we could just be. My prescription for nausea was filled while I stayed being infused. Lovely. Although that did mean I navigated the fire alarm alone. The alarm droned, “this is not a drill” with flashing blue lights, while failing to say what you do when it is not a drill. Everyone in the ward was tied to toxic chemicals. It is a large building. The answer seemed to be for the staff to close you in your single room. Such solitary confinement never goes over well with this gal assigned a windowless chamber. So I left, found a lounge window ledge to sit on, infusion equipment in tow, and watched the fire trucks arrive. My last treatment overlapped with the collapse of a downtown building and the 12 survivors being brought to this center. I am getting used to the secondary dramas unfolding in a large urban hospital.

My ‘vacation visit’ with my sister was over too soon. I don’t know how to survive recurrent ovarian cancer but I do know enjoying the moments probably does not hurt. Hopefully, getting into one of the most exciting clinical trials of the times will help as well. Stay tuned!