Being with Dying...

That's the title of a book that my thoughtful and caring sister bought me.  I haven't spent much time with it yet, I guess I'm too busy processing my own feelings and memories and thoughts to let in those of someone else, no matter how wise.  Perhaps this post will free up some space for that, perhaps not.

Yesterday I accompanied my Dad to a consultation with the surgical oncologist who performed his emergency surgery to remove a mass from his rectum which had perforated through his bowels.  There was lots of infection, and as we found out later, the mass was cancer and that had metastasized freely in his liver as well.  He had drainage ports put in because of the infection, and his digestive tract had to be diverted outside and an ostomy was installed.  These were life saving measures, and still, in the ICU after surgery, he looked like death warmed over, mumbled incoherent thoughts, and gripped my hand like I was a life preserver.  The doctors spoke to me in hushed tones, concern in their eyes, Dad was being watched carefully and they expected trouble from the infection in his gut.  I drove to the hospital every day for weeks as he convalesced, packing bags to keep my 4 year old live wire quiet by the bedside, bringing coins for meters, finding all the best parking spots and learning the maze of HCMC.  It felt good to hold Dad's hand, to be a reassuring presence, to pump his system with juiced carrots, and massage his feet with essential oil, an act of Biblical proportions, but to me just a way to show love and take care.

He got better!  He recovered from a surgery they didn't think he might.  He got well enough to be moved to the regular unit, and eventually to the care facility where he lives today.  When he found out he had Stage IV, metastasized cancer, his thought was to fill up the month or so left ticking off a few bucket list items before his time was up.  He reluctantly agreed to undergo the recommended chemotherapy, which was billed as palliative, meaning we could expect no cure for Dad from his colorectal cancer, but chemo could extend his life and keep the disease at bay.  Many times I heard from his hematologist that chemo would continue, "as long as the disease responds and as long as he is able to tolerate it."  And respond it did.  After the first two rounds, Dad's tumor marker, a test run on blood, fell from the upper 20s to in the normal range of 1.6 or so.  The mass did not regrow at the original site.  After the second two, everything remained 'stable', meaning it shrunk a millimeter or less.

And at that point, Dad decided he no longer wishes to tolerate chemotherapy.  Part of me understands...  He spends his time on a small cot in a shared room at the care facility, does not wish to participate in the goings on or develop relationships there.  But, he does not feel able to go out because of the bag.  He worries it will leak and embarrass him.  He finds the whole thing disgusting, embarrassing, and very, very limiting.

Which leads me back to the surgical consultation yesterday.  The ray of hope.  The surgeon had said initially that the possibility existed for Dad to be reconnected and function normally.  He tempered that with the high statistical likelihood for the cancer to reoccur in the pelvic region, but the ray of hope remained in our hearts.  'Maybe Dad will beat it, his body is responding to chemo, maybe he can eventually have a normal life.'

No.  I watched Dad accept the words of the doctors into his body physically, like there had been a touch accompanying them.  No, it is not recommended to reconnect the colon, he had so much infection after the first surgery that the very real possibility is that he may never leave the hospital after the procedure.  Besides which, there is about a 50% chance of a leak with the location and condition of his body there.  The doctor found it a miracle that he survived the first surgery and feels Dad had used up his good fortune.  He is welcome to consult with another surgeon for a second opinion.  It is recommended that he continue with the chemotherapy.

Life can hurt.  I remember this morning, the Dad of my youth, with golden hair, twinkling eyes, an irresistible smile, and lots of stories and corny jokes, ready to lend a hand and host.  By contrast I see the Dad of today, thin, grey, silent, no twinkle and a smile that is a habit but with no heart in it.  Why is it that color drains of a person nearing the end of life?  Color = Life.

I wish I could bring color back to Dad.  I wish he hadn't lost his ray of hope.  It seems unlikely that he will make peace with his bag, and live with gusto until his time is up.  This is my version of best case scenario, but I know that when you are terminally ill your priorities and perspective changes.  Dad tells me this.

It is my time to be with dying, and it is a sad time.

Wednesday, Chemo Day

Wednesdays are the days I bring my dad in for his chemotherapy.  I need to make sure Emmett and I get ready along with Clarabelle, and a few minutes after she heads out for her school day, we head out to pick Grandpa up from the care facility.  I have to make sure I pack some things to keep the 4 year old occupied so I can be eyes and ears for Grandpa when the nurses question him and the doctor gives us an update.  Thankfully the Cancer Center has cookies or graham crackers available usually, so that's enough of a treat to keep the little one happy.  Sometimes Grandpa even enjoys those too.

Today marked the beginning of Round 4, so we met with his doctor and she got a handle on how Dad felt off treatment for 2 weeks, what his symptoms are, whether he can continue to tolerate the dosage she has prescribed, and so on.  At the end of this round, he'll be scanned again and we can see how his body is responding.  So far so good, the therapy has been more effective than we dared hope for at the beginning.

Hope.  That is something a terminal illness makes you examine.  Can you hope to get better?  If the end of days is in sight, what hope remains?  Up' til that point, if you believe in God and life after death, those things may or may not feel vital to your well being or of utmost importance on a daily basis.  Times like these bring them fully into the spectrum of what is real and vital.

Besides those loftier unknowns, from a physical standpoint, just enduring the illness and the effects of the treatment can make it a challenge just to get up and dress for the day.  As the daughter to one experiencing this, it's wearing emotionally.  It's been hard for me to accept the terminal part of his diagnosis, and words like 'palliation; and extending life.  At the beginning I really wanted there to be a fix, for us to just be able to work hard, research enough, change his diet, have aggressive therapy, and beat it.  Now I have learned to accept what he is going through and how it is for him.

But it is still draining emotionally to see him weakened, easily confused, worn out, sick.  I am glad I can support him, glad he is still with us.  It is hard when you want to make something better, and simply can't.

Happy Summer 2011

I used to express myself creatively through writing much more than I have in recent months and years. Perhaps it is because there is a finite amount of room/space/time for creative expression, and these days I am so heavily involved in henna and entrepreneurship that there is little time to sit and think in type.

But this morning it is time to write. I'm sitting in the window seat, looking out at the lake across the street with gentle waves interrupting the reflection of the milky grey sky. Downstairs I hear my two Es (Elli 14 and Emmett 4) playing Wii. Clara (9) is industrious in her room, she wants to invite a friend over to play tomorrow. Deven (12) is off somewhere by himself, usual for my dreamer boy. Deven and Elli are writing books this summer, and I am amazed by their ability. Clara is growing in artistic ability every day, and has recently started to use shading techniques and seems to follow in the portrait inclination my Mom and I both leaned toward in our sketching days. Clara loves playing with henna design elements as well and is already quite the henna artist. Emmett is smart as a whip and full of energy and mischief, and empowers himself in lots of ways he shouldn't. He's not about to ask for help or permission, he just does what he wants! ( For example just now he found a bit of thread coming out of the drawer and pulled it out to a length he could loop around Bungee (our cat's) mid section, and watch as the thread grew longer and longer as Bungee moved out of his reach). But he's learning every day about manners and gentleness and acceptable behaviors :).

Yesterday we celebrated Father's Day. We gave Nat decadent breakfast in bed, and presented him with a new backpack stuffed with things needed for a geocacher, complete with coordinates to a cache in a nearby park. Once breakfast was complete we went to hunt the cache, which he found with no problem (next time we'll put on bug repellant before we leave so we can hide it deeper in the forest :). Dad came over in the afternoon and we grilled steak for him (his favorite food) and the kids put on a lunch bag puppet show they wrote in honor of Nat and Grandpa and rehearsed several times.

I was thankful to spend Father's Day with my Dad. Special occasions like this take on layers of meaning now that he has been diagnosed with Stage 4 cancer. I was happy he felt well enough to spend some hours here, as he hasn't for some time. Illness and death, health and wellness, alternative and traditional medicines... These things are occupying my thoughts and are subjects of my research these days when I can make time. I find it difficult to embrace death as part of life. It does not feel like a natural part of the flow of things, and peace is elusive. I resist accepting, and instead would like to find a way to encourage the body to heal itself.

It is good to have the children around, experiencing the other end of the spectrum where life and ideas and experience are expanding rapidly, and energy is strong and end of days is banished from thought. They are amazing, beautiful, creative, talented, exasperating, energetic, precious children and I am so blessed to be their Mom.

This summer we plan to take advantage of community events in our area like movies and music in the park, hang out at the library and beach, geocache, camp, get together with friends, and I'll take henna to a variety of places. Summer vacation is off to a great start :).