Robin's Journal

At Robin's memorial service this passage from her personal journal was read:


"Hello, Today is Wed Sept 1st 2004. Welcome Fall. Still working on trying to do the same things. Fix the house up, meditate, read, exercise, work, love.

Having a fun day. Worked in the a.m. and then met Sharon [a massage therapist friend] for lunch and a movie. We saw Hero. An epic tale of how China came to be. It was OK. Maybe I should live my own epic tale. What would that be? Does there need to be an enemy to conquer, a love to die for, something just out of reach pushing the hero to continue on the conquest?

Life isn't about the conquest it's the path that takes you there that is exciting.

I certainly live in a bubble. Robin's world :) guess we all do to some degree.

Breathe every moment of life. Breathe, breathe, and breath some more.

Not sure what life is about. My only goal is to be happy and I have achieved that. Time to work on new goals. Go deeper into the murky depths of life. I am full of shit! ;)

I think we spend so much time looking for the perfect job, or the perfect mate, the perfect anything….we forget it's not something to look for it's something to create. To be a trail blazer create the perfect whatever. I think the imperfect is more interesting than the perfect anyway.

What would I create?"

Open House Saturday!

Separate from the private family service, friends are welcomed to an open house on Saturday, February 24th from 1pm to 4pm at the residence.

I expect Robin would have wanted us to keep things light, so if you've got a Hello Kitty shirt, that would be most appropriate to wear! If you don't happen to own one then any festive, colorful outfit will do! I expect we'll also be playing Robin's favorite music so you might hear songs from Tina Turner, Carole King or Sarah McLachlan on the stereo. We consider this a time to celebrate so if you're interested in coming, then bring a positive spirit and a smile!

Robin Obituary

Robin 43, passed away in February 2007 with her loved ones by her side at her home following an extraordinary battle with cancer.

Lance Armstrong Foundation (www.livestrong.org ):

Lance Armstrong Foundation (www.livestrong.org ):

About Us

"We believe that in the battle with cancer, unity is strength, knowledge is power and attitude is everything."


The Manifesto of the Lance Armstrong Foundation

We believe in life.
Your life.
We believe in living every minute of it with every ounce of your being.
And that you must not let cancer take control of it.
We believe in energy: channeled and fierce.
We believe in focus: getting smart and living strong.
Unity is strength. Knowledge is power. Attitude is everything.
This is the Lance Armstrong Foundation.

We kick in the moment you’re diagnosed.
We help you accept the tears. Acknowledge the rage.
We believe in your right to live without pain.
We believe in information. Not pity.
And in straight, open talk about cancer.
With husbands, wives and partners. With kids, friends and neighbors. And the people you live with, work with, cry and laugh with.
This is no time to pull punches.
You’re in the fight of your life.

We’re about the hard stuff.
Like finding the nerve to ask for a second opinion.
And a third, or a fourth, if that’s what it takes.
We’re about getting smart about clinical trials.
And if it comes to it, being in control of how your life ends.
It’s your life. You will have it your way.

We’re about the practical stuff.
Planning for surviving. Banking your sperm. Preserving your fertility. Organizing your finances. Dealing with hospitals, specialists, insurance companies and employers.
It’s knowing your rights.
It’s your life.
Take no prisoners.

We’re about the fight.
We’re your champion on Capitol Hill. Your advocate with the healthcare system. Your sponsor in the research labs.
And we know the fight never ends.
Cancer may leave your body, but it never leaves your life.
This is the Lance Armstrong Foundation.
Founded and inspired by one of the toughest cancer survivors on the planet.

LIVESTRONG™

Smilin' Face! :)

About ten years ago Robin's father passed away from cancer. What a disease. The treatments take away your hair. Over time you lose unbelievable amounts of weight. In the end the shell of your body hardly resembles your former healthy self.

Whenever I remember Robin's father two different images come to mind - his gaunt body just before his death, and his regular, smiling self the way he looked before he ever was sick. Over time the images of him when he was ill seem to fade, but the images of the regular Bill Bradley persist in my mind.

So it will be with Robin.

Here are some pictures from Jan 2006. She was thrilled because one of her clients had just presented her with "Hello Kitty" pajamas!

Robin's soul released!

After several very quiet days in bed, Robin began to breathe more heavily around 10pm last night. Her respirations eventually increased to about twenty-six per minute. The heavy breathing seemed like a huge effort for someone who had been so still lately.

Me, my Dad, my sister Kim and brother Jonathan sat by her side. Each person held and rubbed a hand or a foot. As we have been doing, we continued to express our love and encouragement, and we continued to let her know it's OK to go when she was ready.

After what must have been about an hour Robin suddenly sat up slightly, looked at us and then lay her head back down and took one last deep breath. Then she was gone.

As she left her body it achieved a state of relaxation that Robin hasn't had in months.

We're happy for her soul to have been released from this world so she could finally let go of the challenges and the pain she'd been experiencing since last Summer.

What a relief *for Robin* to finally be free!

Robin Saturday

Robin's definitely been on the decline. She hasn't spoken in a few days and she doesn’t open her eyes and look around anymore. Now her eyes are about one-quarter of the way open all the time. She used to be a little restless, but now if you place her hand at her side or on her abdomen her hand stays right where you left it. She just doesn’t move on her own anymore. We do drip small amounts of water into her mouth and she will swallow occasionally, but we have to be careful - if we give her too much she coughs (although very, very weakly).

Space shuttle - over 90% fuel!

Sometimes this endeavor makes me think of a Space Launch.

When the Space Shuttle is on the launch pad over 93% of its weight is fuel.

It's as if all your support and all the well wishes are the fuel that carry Robin aloft!

Here are some more photos:

Me and Robin and Tessa, Kristen and Patrick:

Robin after a day of Skiing:

Robin in 2004 when she biked over 3,000 miles in one summer (yeah, I know she's holding up six fingers, but it was just 3,000 miles)

I see miracles every day! (Thank You)

We don't always receive the miracles we ask for, but we're often rewarded with so many others. Since we began down this path the love and support from family, friends, co-workers and people we have not even met before has been immeasurable.

I remember the very first weekend after Robin's diagnosis I had said to her (and later to my Dad) that I had concerns about work and about how we would handle finances. They both said to me that I needn't worry about these issues, that they would "take care of themselves". They didn’t say "we would deal with these things later", they both said the issues would 'take care of themselves' and so they have. I guess Robin and I have always been pretty self-sufficient over the years, but this experience has been so overwhelming that there was no choice but to just trust, let go, and accept the gifts you've given us.

My message to everyone who has walked alongside us, provided us comfort and support, and has had us in their prayers - Thank You. Throughout this journey you folks have been the source of our miracles each and every day!

And Another Quiet Day

Update from Dad:

Robin is comfortable as she continues her journey. She seems in her mind to be ready to take the next step - but her body is apparently not yet ready to quit. This wonderful, strong woman is proving she has what it takes!

Our job is to keep her safe and comfortable during this time. We give her meds on a regular basis, even throughout the night, to help her manage her pain.

Greg's brothers Jon and Corry are here for a few days and his sister Kim delayed her return home for a while to be with Robin. We appreciate the support of their families left at home while they come here to help.

We all hope for a continuing peaceful journey for Robin.

Quiet Day

It's been a quiet day. Hardly a peep out of Robin. She seems to be very sleepy, but also very comfortable!

The Prophet

Communication with Robin is less and less. The hospice folks have told us about signs to look for when she's down to a day or two (hands and feet turning blue, cooling of extremities, long pauses in breathing), but they've also said that not everyone has the same signs, so we might get surprised. They have said that she is "moving along the path". One fellow said she might pass soon, but another person said that Robin is a pretty healthy patient (aside from the cancer obviously) so she might have a couple of weeks to go.

These days she really just takes small sips of water (drip by drip onto her lips), and she hasn't eaten food in a long time. She is definitely much more comfortable when resting. She was starting to have a furrowed brow all the time but we've increased her medications and now she almost always looks relaxed.

When she is 'awake' Dad tells her stories or he sings to her. Last night Dad, Kim and I read aloud to Robin portions of the book "The Prophet" (specifically the chapters on Love, Marriage, Giving, Joy and Sorrow, Friendship, Prayer, Beauty and Death) while we held her hands. She says very little now, but occasionally she does say something that makes it clear that she is still thinking in there...

Scared me

Last night Robin gave me a scare.

She had been sleeping for many hours and her breathing had become slow and labored - only five breaths per minute. She seemed to be pausing between breaths. Her mouth was open and looked very dry. Her eyes were not quite closed - they were just barely open like small slits. I was talking to her and rubbing her arm, and I guess I was intending to wake her to say hi.

It didn't seem like I could rouse her. I started to get a sick feeling in the pit of my stomach and felt a bit shaky. As my anxiety increased I said to her "I'm scared". Then, in opposition to everything we've been telling her, I said "I don't want you to go yet". (whoops - so much for all that support!)

I went and found Dad and I tried to explain that I thought things we're looking pretty bad. We went back and sat with Robin. A little while later she stirred. Her breathing returned to normal and she closed her mouth. As she awoke I gave her some water.

Afterwards I re-read the literature about dying. Apparently it's expected that breathing will become irregular for periods of time. As things progress these periods will last longer and longer. Guess we have a ways to go yet.

Resources?

Someone asked if the Hospice folks could be supplying people to help out with taking care of Robin.

Well, sure - that's what they do.

Actually the Hospice organization is able to provide caregivers who can be here at the house twenty-four hours a day, plus daily nursing visits, daily personal care visits, weekly social and spiritual counseling, and volunteers who provide massage!

Over time we've accepted many of these types of assistance and we *really* appreciate all the folks who are helping - but honestly we've hoarded a lot of the care giving for ourselves. Several folks have said that this is Robin's gift to us…

Definition: High Performance Teams

Definition (from an Internet web site): "High Performance teams are created with a mission or purpose in mind. Over time teams develop their own set of norms. Norms are rules or guides for team behavior and decision making. The idea of using teams to solve problems and achieve results is based, in part, on a concept that the collective brainpower of a team far exceeds the ability of any manager. Therefore, to a large degree, teams are self-directed. High Performance Teams are also empowered. Teams are motivated by the challenge of achieving dramatic results within a short time-frame. It is quite normal for teams to thrash and churn during the early stages of development. This will usually appear chaotic to outsiders and team members alike. It is also normal for 75 percent of the real work of a team to be accomplished during the last 25 percent of the time alloted. Team members are expected to learn as they work together. Often the scope of work of a team touches or involves the activities of many people beyond the team itself--this external group can be referred to as the community of interest that must be included in the team's communication loop. All teams experience a shortage of resources. This phenomenon must be understood, expected, and available resources defined for the team from the team's inception."

Hmmm…seems like we've got a high-performance team going here! Not only with the folks residing at the house, but also friends from the nursing and bodywork fields who are helping meet Robin's physical, mental and spiritual needs!

Pit crew

One of the nicest compliments we've received is from a visitor. After observing Kim, Dad and I taking care of Robin our friend stated "I want you to be my family"! :)

We repeat many activities each day. Every four hours we do meds, when the stomach tube is soiled we change the gauze pad around it, and occasionally we change an Attends (well, it’s a big diaper but we prefer to just call them by the brand name "Attends"). It might be bragging, but I can tell you that the three of us can change one of those puppies in fourteen minutes flat! (though it probably takes one nurse five minutes!)

"In Bed"

About a week ago Robin made it downstairs and she's stayed in the hospital bed ever since. Last week she was using a commode (port-a-potty chair) but the last time we used it was approximately Saturday. To get her on the seat we'd sit her on the edge of the hospital bed and then have her put her arms around my shoulders. She and I would stand together and then take a few steps over to the commode - kind of like dancing. I would tell her that helping her move was my favorite part because of the hugs!

She had worn adult diapers a few times before, but over the weekend she switched to them full-time. The short "walks" to the commode were becoming increasingly difficult as her legs just didn't want to work anymore.

Significant events

The Hospice folks are always evaluating what's going on with Robin. This morning we experienced what they considered a significant event.

Kim, Dad and I were chatting with Robin when she decided to take a minute to say goodbye to each one of us. She took time to address each one of us individually and to say goodbye and get a goodbye back. Although Robin finished by saying "I'll see you all this afternoon". The hospice folks said the "goodbye" was the most significant portion of the interaction.

The hospice folks are usually pretty evasive about timeframes, but two different folks who visited today said they thought she was moving down the path and we're down to days or weeks. I guess the most obvious signs (even to us layman) are that she's not eating and she's drinking very little. One of the hospice folks had mentioned that a human only survives about seven days without water and about four weeks without food.

What we've read about dying, and what the hospice folks have reinforced is that Robin's lack of interest in food and water is simply part of the dying process.

Guided imagery

Although we have had a few challenges here and there, we've had many days where we share smiles and hugs and tears. Over time conversations with Robin have become simpler. Mostly we ask her about what she sees or about her stuffed animals. As her body has slowed down her ability to remember things has decreased and her rate of speech has slowed so it often sounds childlike. Each day she rests for longer and longer periods with her eyes closed.

Most of the time she is not sleeping, rather she's paying attention to what's going on in the room. As we have discussions sometimes we'll see her nod her head, or open her eyes to look at us. A couple of nights ago I called to order some takeout food. As I was ordering soup my attention was drawn to Robin who wasn't looking directly at me, but she was making a peace sign in my direction. It took a moment to realize what was going on, and then I asked Robin "did you want a soup also?". She nodded yes and then closed her eyes and lowered her hand. It wouldn't have seemed out of place, except Robin hasn't eaten any kind of food in a week - but she's in the room and she wants to be part of the action.

Last week one of the hospice folks talked to Robin and helped guide her through some imagery. The nurse asked Robin to close her eyes and to go for walk with her. She would ask Robin what she saw as she was walking along. Sometimes she would see people, sometimes things and sometimes animals. The nurse would ask Robin what she wanted to do with the object, for instance if it was a person then "are they saying anything to you", or "do you want to ask them something". Whenever Robin seemed done with an object the nurse would say, "OK, let's step through a door, leave them behind, and close the door". At one point Robin "came across a blanket", "picked it up" and found a smiley face underneath!

The nurse really helped us understand how much Robin's consciousness is still present even when it looks to us like she is sleeping. Since then my sister Kim has become our resident expert in helping guide Robin through an occasional journey.

February 2006 - some old pics

Here we were a year ago, vacationing near Tampa:

My Dad, my sister Kim and Robin -


With Kim's and her daughters (Robin's nieces): Jessica, Robin, Kim and Alison -


Robin the Potato Chip fiend -





On a ride to Shell Key, to pick up shells of course -

Foster the other person's dreams

People often say Robin and I have such a strong bond. I don't think that we are so much different from anyone else. We have had our challenges but what kept us going was simply that in the toughest times we continued to choose to be with one another.

We learned a little along the way. One of the most precious gifts was to see in one another the dreams we each had for ourselves. So often we can't seem to see past the hopes and dreams which we imagine for another person (especially our spouse or loved ones).

Somehow we found a way to hear each other's dreams and make them happen. But we're not that different from anyone else - as Robin says it all starts with learning to Listen!

Saturday night

Saturday night Robin started to become agitated again. With the background about what "gotta get, gotta go" is all about we countered by starting to talk to her about how we understood that something was wrong, we understood she was sick, but there wasn't anything we could do about it. Robin immediately changed from being belligerent to being sad, but we were able to talk about it. I talked to her about how some people die young and some people die old, and there doesn’t seem to be a rhyme or reason to it. I recalled a television program about St. Jude's Children's Hospital which detailed the lives of many children who were treated successfully for childhood cancers, but many who also did not survive.

At one point she said the word "choice" and I asked what was her "choice". She said her choice was "to live". All I could say was that we have today and we "if we work at" (what the heck did that mean?) we could have tomorrow.

After some time we changed the subject and I began to talk about things we'd done together - she closed her eyes and listened. I talked about our bike rides locally along the rivers and out in the countryside, I talked about bikes rides through New York City (at an annual event with 30,000 cyclists), long bikes rides (sixty to one hundred miles), and rides out on Block Island and Martha's Vineyard. I talked about last Spring when we did a long organized ride North of Montreal and the various people we met. We didn't all speak the same language, but we still managed to meet engaging folks with whom we could share the passion for bicycling - even when communication was through pantomime.

As I talked she let me give her the evening medications and she drifted off to sleep (well, actually Kim said it might have been the droning of my voice which put her to sleep!).

Quiet Days

Friday and Saturday were mostly quiet days. Robin had a brief relapse Saturday evening but nothing like Thursday's events. The Hospice nurse said she expected Robin would sleep well for a couple of days after that long night of activity.

Gotta Get, Gotta Go

Three and a half hours later is when Kim says "All Hell Broke Loose".

Weeks ago we had purchased a "wireless" doorbell from the hardware store. We had put the ringer upstairs and the button by Robin's hospital bed. At 2:30am the doorbell began impatiently ringing non-stop. I don't remember getting out of bed - my first memory was seeing Kim in the hallway as we headed downstairs. I imagined this must be how firefighters feel, responding to an alert with no idea what it's about. We entered the living room to find Dad sitting on the bed with Robin, firmly holding her arms. She was quite ready to "leave" again. She had a cord from the bed wrapped around her right arm and the doorbell ringer in her left hand.

Dad had tried ringing us once or twice before Robin grabbed the doorbell button out of his hand and now she wouldn't let go of it. I took up position on Robin's other side and I took her left arm to reduce Dad's workload. We held her arms until she stopped squirming, but as soon as she was loose she would grab for my glasses, pickup and throw nearby items, try to bite and try to scratch. Kim scrambled around and started moving items out of her reach. Robin had a wide-eyed look and alternated between laughing and yelling. She had more power and energy than we thought was possible, but it wasn't enough to challenge us from holding her in place.

For the longest time we just kept her contained as we looked for distractions. After a long while we offered her stuffed animals which she called "puppies". She started to calm down, but then got caught up in the idea that we we're killing the "puppies". She yelled and she cried about the poor puppies and she said she was trying to save some of them, while others were already dead. She cried her heart out and yelled at us for killing the puppies. She gathered as many as she could to protect them from harm.

The toughest part for us was that we now had no way to give Robin medication if she wouldn't cooperate, so she was going to set the pace. After the longest time we had a lull in the action and an opportunity to call a Hospice nurse. I explained the evening events and the nurse reassured me that this was perfectly *normal*! She said it happens all the time and that they call it "Gotta Get, Gotta Go". They believe it’s a manifestation of fear and anxiety - the patient knows something is wrong but they don't know just what. It may also be a way for the patient to draw attention to themselves to say "I hope somebody knows that something's not right".

Most all the patients proclaim a need to go to the bathroom - somewhere we head to when we're not feeling well - or a need to go to some other place ("Gotta Goes"). Some will proclaim a need to be fully dressed ("Gotta Gets"). Apparently some families will rush around the house to get clothes and dress the patient thinking that the anxiety will subside, but of course nothing eases the patient's mind.

The nurse explained that all these actions fall under the heading of "restlessness". Hmmm, somehow I had neglected to think so expansively when I read the term in the booklet!

For many patients this "restlessness" occurs at night when things are quiet and there are no visitors. Often the family has to adjust and stay up all night. Keeping the lights on or playing the television can help keep the patient distracted.

In our case we managed to sneak some medications as we talked Robin into having a drink. Later, after a hospice nurse arrived (around 3:30am?) we talked Robin into taking some more medication. This time it took more perseverance to sneak stuff past her. We'd offered to put Tylenol into her stomach tube, but she was leery of accepting anything she didn’t see poured right out of the bottle. On the third time pouring some Tylenol into a medicine cup, we managed to distract her momentarily and add some morphine to the mix.

By 5:30am the hospice nurse had left and Dad had gone upstairs to bed. Kim took the next shift with Robin and we planned to carefully keep to a medication schedule. On Friday we added Haldol to the mix of medications to help keep Robin relaxed. As it turns out she was tired out today and very quiet, even before we received the new medication late in the afternoon.

The Hospice folks say some patients have terminal restlessness that lasts 24 hours a day until the end. Apparently it's a good sign that Robin's had a relaxed day - we hope not to see a night like that again!

Robin rising

Robin had a restful Thursday until about 10:30pm. We had just finished giving her the bedtime meds through her stomach tube when she woke up. She woke rather quickly and began saying that she was "leaving". I thought she was making a metaphorical reference to death and in a bit of shock all I could do was ask "what do you mean?". I repeatedly asked what she meant and she kept responding she was leaving, then she made her meaning quite clear as she grabbed the side rails and started pulling herself out of bed. She was speaking loudly with her eyes wide open and she was waving away any attempt on our part to get close to her.

For days she's only been out of bed with assistance (and even then she barely shuffled her way across the floor), but now she was quite literally ready to leave under her own power. She said she "didn't want to be in the hospital anymore" and she was going home. We blocked her from getting up and said she couldn't get up without our assistance - an option she was not open to considering. Her story soon changed and she began saying that she had to go to the bathroom but she didn’t want any help. After a stand-off that lasted a five or ten minutes she lay back in bed, covered her face with her hands and started sobbing.

Over the course of about ten minutes we watched her calm down as we talked to her about taking deep breaths and relaxing. Luckily this entire episode had begun with her receiving medication so that worked in our favor. We considered this episode to be the culmination of a confusing day. We discussed whether we would awake Robin in four hours to give her more meds, but overall we figured we had dodged a bullet.

Dad volunteered to spend the night in the living room with Robin, and Kim and I would get to sleep in our beds upstairs. Robin's been sleeping through the night so we figured we were all set, but we couldn't have been more wrong.

Kim referred to this first episode as "when the $%#! hit the fan".

Recent photos

Here are photos from some recent days:

Robin + Connie:

Robin +Kim (after a crying match!)

Quotes Part II

Well, I guess there's always room for a few more quotes! ;)

--------------------

"We do not want to know life, which includes death, but we want to know how to continue and not come to an end. We do not want to know life and death, we only want to know how to continue without ending. That which continues has no renewal... It is only when continuity ends that there is a possibility of that which is ever new."

Krishnamurti A Sage From India

-------------------

Rava said to Rav Nachman, "Show yourself to me (in a dream after you die)."

He showed himself to Rava.

Rava asked him, "Was death painful?"

Rav Nachman replied, "It was as painless as lifting a hair from a cup of milk. But were the Holy One to say to me, "You may return to that world where you were before' I would not wish to do it. The fear of death is too great."

Mo'Ed Katan 28A
Where Heaven & Earth Touch:An Anthology Of Midrash & Halachah
The Town House Press, 1984

Quotes for everyone!

http://www.hospicenet.org/html/watch.html

"It is good to have a reminder of death before us, for it helps us to understand the impermanence of life on this earth, and this understanding may aid us in preparing for our own death."

Black Elk, Oglala Sioux

-------------------
No one knows where the Spirit World is.
The ancient people said that it is beyond the pines.
The pine trees are at the edge of the world,
and beyond them is the path of the winds.
The Spirit Way begins there at the edge of the world among the stars,
and the winds will tell the spirits of people where to find it.

What is Life?
It is the flash of a firefly in the night.
It is the breath of a buffalo in the wintertime.
It is the little shadow that runs across the grass and loses itself in the sunset.

Paul Goble Beyond The Ridge Plains Indian Tradition
Bradbury Press, 1989
-------------------
"O son of an enlightened family, what is called 'death' has now arrived, so adopt this attitude: 'I have arrived at the time of death, so now, by means of this death, I will adopt only the attitude of the enlightened state of mind, loving kindness and compassion, and attain perfect enlightenment... limitless as space.'"

Sogyal Rinpoche, The Tibetan Book Of Living And Dying
Tibetan Buddhism Harper San Francisco, 1992

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One day, I was sitting with Rodleigh, the leader of the troupe, in his caravan, talking about flying. He said, "As a flyer, I must have complete trust in my catcher, The public might think that I am the greatest star of the trapeze, but the real star is Joe, my catcher. He has to be there for me with split-second precision and grab me out of the air as I come to him in the long jump."

"How does it work?" I asked.

"The secret," Rodleigh said, "is that the flyer does nothing and the catcher does everything: when I fly to Joe, I have simply to stretch out my arms and hands and wait for him to catch me and pull me safely over the apron behind the catchbar."

"You do nothing!" I said, surprised.

"Nothing," Rodleigh repeated. "A flyer must fly, and a catcher must catch, and the flyer must trust, with outstretched arms, that his catcher will be there for him."

When Rodleigh said this with so much conviction, the words of Jesus flashed through my mind: "Father into your hands I commend my Spirit." Dying is trusting in the catcher. To care for the dying is to say, "Don't be afraid. Remember that you are the beloved child of God. He will be there when you make your long jump. Don't try to grab him; he will grab you. Just stretch out your arms and hands and trust, trust, trust."

Henri J. M. Nouwen A Roman Catholic Priest
Our Greatest Gift: A Meditation On Dying And Caring Harper, 1994

the book "The Prophet" - on death

Then Almitra spoke, saying, We would ask now of death.

And he said:

You would know the secret of death. But how shall you find it unless you seek it in the heath of life? The owl whose night-bound eyes are blind unto the day cannot unveil the mystery of light. If you would indeed behold the spirit of death, open your heart wide unto the body of life. For life and death are one, even as the river and sea are one.

In the depth of your hopes and desires lies your silent knowledge of the beyond; and like seeds dreaming beneath the snow your heart dreams of spring. Trust the dreams, for in them is hidden the gate to eternity.

Your fear of death is but the trembling of the shepherd when he stands before the king whose hand is to be laid upon him in honor. Is the shepherd not joyful beneath his trembling, that he shall wear the mark of the king? Yet is he not more mindful of his trembling?

For what is it to die but to stand naked in the wind and to melt into the sun? And what is it to cease breathing, but to free the breath from its restless tides, that it may rise and expand and seek God unencumbered?

Only when you drink from the river of silence shall you indeed sing. And when you have reached the mountain top, then you shall begin to climb. And when the earth shall claim your limbs, then shall you truly dance.

The Prophet
Kahlil Gibran

An e-mail excerpt:

An e-mail excerpt:

Hi folks,

Well, I thought my communication was getting slow and so it has. It really has been very quiet with Robin sleeping most of the daytime.

We do continue to see nearly daily signs of Robin's disease progression. She's pretty much stopped asking for food, though today she asked for a glass of milk at around 11pm. She's also drinking a lot less water. She continues to lose weight and her skin is sagging on her bones (like a loss of skin tone). I expect this is from her circulation decreasing. Today when she got up to go to the bathroom her legs were beginning to give out on her. I think she found this particularly unsettling. That may be her last trip walking to the bathroom.

After she got back in bed she was sad and cried a little and starting asking questions. Dad, Kim and I took turns sitting with her. She asked a lot of questions about what happens next, and how does she know what to do next.

She just about never thinks we're at home anymore. She's also having difficulty interpreting sounds. She was talking all evening about dogs growling and it finally occurred to us that it was her stomach growling, so we gave her some liquid food supplement through the stomach tube to help with that.

For several days now she has had disorientation similar to what is written about in the booklet "Gone from my sight". The booklet also describes changes in blood pressure and temperature during the last week or two. The nurse is now checking her blood pressure at every visit and so far it's normal. Robin's temperature fluctuates during the day. Her head and limbs can feel very warm one minute and then soon after they can feel very cool to the touch.

The hospice nurse usually starts talking about what signs to expect next. During the last couple visits the nurse has been mentioning things that will happen on the last day, and today she started going into more detail.

The hospice folks all say they like visiting our house. They say we all seem so (relatively) relaxed and peaceful.

Me

Tom started it…

The folks at our Dentist office have been extremely helpful ever since we began this journey (they've helped in too many ways to even cover). In the first six weeks of Robin's journey with cancer (mid-June thru July) we kept taking her back to Tom (our Dentist) because the swelling in her cheek had moved into her gums. Tom was one the most professional folks - checking her out, stating what he knew and what he didn’t know. In July when the medical folks decided Robin didn't have a sinus infection but instead probably had some type of tooth infection, Tom was there to say he was pretty sure she did not (but as a true professional would) he also said he couldn't be absolutely certain so we should keep an eye on it.

Tom made a house call several weeks ago, as the growth in Robin's cheek has again spread to her gums. When we got word that Tom was coming to our house my Dad said "Wow, a Dentist who makes house calls", without missing a beat Robin said with a smile "Well, he doesn't make house calls for just anybody".

During Tom's visit it was obvious that the tumor tissue was growing in her gums again, just days after his visit the tan colored tissue would start popping out again around her upper right molars. Tom said her upper right teeth were only a little loose and if she had any problems to just give him a call and he would come back out to take a look.

Last week I had my regular dental checkup. Afterwards Tom offered again to do anything he could for Robin. At the end of the conversation I had the impression he was starting to get a little choked up as he left the exam room, but then I couldn't tell because I was getting tears in my eyes. I made a beeline for the door when I heard his wife Denise call me and say "where are you going without saying hi". As she approached me for a hug I figured she could see me starting to cry and I just squeaked out the words "Tom started it".

More Quiet Days

Sunday and Monday have been relatively quiet days for Robin. She had stayed upstairs for several days in a row until Saturday when she moved downstairs for the day. Now she spends most of her time in the hospital bed in the living room. Saturday she took a break to go sit in the kitchen for a while where we trimmed several plants. Today she hasn't yet been out of bed.

Between the pump and the oral pain medication she is able to control her pain very well. She's been sleeping for longer periods during the day, and when she is awake she sometimes experiences confusion. Sometimes it's about where she is, sometimes it's about what is going on in the world. She usually understands when we explain the confusion and sometimes she's even aware of it herself. Earlier today Robin said to my sister Kim (who is once again visiting from Kansas) something about feeding "our dog" and then Robin corrected herself, saying she must be confused because we don’t even own a dog!

Now matter what, she still has her sense of humor!

Robin's in charge (and chocolate donuts)

Well, Robin's in the drivers seat once again. Friday night while getting her ready for bed I mentioned how it had been a tough day. Robin asked me what was so stressful, so I told her about the afternoon and how we'd had difficulty waking her up. This made her a little sad - she didn’t realize what had happened in the afternoon. She said it also helped her understand why Dad and I looked anxious when she woke up. That's why she had cried in the afternoon - because we'd been acting so upset and stressed.

I described the rest of the afternoon and how she had been confused. One of the "confused" things that she had been talking about in the afternoon was "the baby". She said she thought Dad and I had also been taking care of a baby in another room, but that we didn't want to admit it to her. She understood now that some of the things she had been thinking of had come from her imagination.

We finished talking about the rest of the day, and of the nurse's visit in the evening. As I went along with the story I kept asking if Robin wanted me to continue telling her about what had happened. She wanted to hear everything so I passed along the observations from the nurse and the signs and symptoms that the nurse said to look out for. I noted that these symptoms were all described in the little blue booklet "Gone from my sight". I offered to read the booklet to Robin if she were interested. She said she would like that and when I offered to read it the next day she said "no, I might not be around tomorrow, let's read it now". We were having this discussion late, late Friday night - well technically early, early Saturday morning. Dad had just gone to bed, but Robin suggested we wake him up so he could help read the booklet to her if I got stuck.

So at 12:30am I woke Dad and he pulled a chair up next to where Robin lay in bed. While I went downstairs to go find the booklet Dad and Robin talked and joked.

It was a little stressful when I started reading the booklet aloud, but we were soon joking around. At one point Robin took a sip from her water bottle and dribbled a bunch down her neck. Instead of getting upset she just said "that was refreshing" - and we laughed.

As we read through the section on "one to three months prior to death" it covered issued like eating less and having less interest in visitors. Theses are things that Robin has been experiencing recently. As we began to read the section "One to Two weeks prior to Death" many of the things were happening in her life right now - sleeping more, experiencing disorientation, temperature fluctuations - this section really caught our attention.

As we read along we would pause and talk and joke. At one point Robin had trouble deciding whether to drink from a glass or from her water bottle. As I began reading again I pretended that the booklet said "the patient may have trouble deciding whether to drink from a glass or water bottle" - this improvised reading first caught Dad and Robin off guard, but then made them laugh.

Along the way we asked Robin if there was anything we could do to help her and she said "Yes, you jump first"!

After we were done we just went back to our normal chores, although it was quite late. Robin needed the gauze around her stomach tube replaced so she and Dad set out to do that. I went and did some things like emptying the dishwasher and taking out the trash. Everything was pretty normal except we were doing these tasks at 1:30am. Maybe it was a way for us to settle down, but it really felt more like the way we've been living for months now. We haven't been focused on the end of Robin's journey, we just keep focusing on the day that we're presently in and what we are doing. I don't think we are avoiding reality - in the past we've already spent days and weeks talking about death. I think we've simply entered a zone where we just focus on the moment.

When I had the private discussion with the nurse yesterday she had said something about learning to live day-by-day. At the time I thought, Robin learned to do that a long time and we've been practicing it for years. I suppose maybe some people need to be reminded, but Robin's way ahead of the game. I think that's what makes much of our time so peaceful (well, except for the stressful moments!).

When all the chores were done I asked Robin if there was anything else to do before bed. And she said "yes, eat chocolate donuts". She asked if I would split one with her and I said yes, so then she asked "what other type of donut could we split?" (we've got three types of gluten free donuts in the freezer!). We settled on cinnamon sugar for the second type of donut.

At three a.m. we sat on the edge of the bed and we shared a chocolate donut and a cinnamon sugar donut and two big glasses of milk! :)

"Going to get tougher"

When Connie was sitting with Robin, Robin said "This has been a bad day".

Connie replied, "pretty stinky huh?"

Robin said "Yep, and it's going to get tougher"

Balancing Act

My sister Kim will be joining us Sunday (for about ten days), so there will be three of us in the house to keep an eye on Robin. There is always at least one person in the room with her.

This last week when considering all the hospice services we've declined so far, I'd given thought to what our priorities are for Robin's care. The top four boiled down to:

1. Keeping her safe
2. Keeping her comfortable
3. Keep her healthy (e.g. avoiding infections to her stomach tube)
4. Maintaining her sense of independence

The hospice folks have been really wonderful working with us to keep up Robin's independence (or at least the appearance of it). They've been very flexible in delivering services to us, even some services that they wouldn't normally do in home. For instance, they prefer to admit patients to the hospital when getting them started on IV methadone.

Anyway, we'll be carefully reconsidering their offer to have folks in the house for extended periods (16 to 24 hours a day). Of all the things "essential to Robin" her independence is pretty high on the list, but we'll need to balance that with an assessment of our personal ability to keep her safe.

The Train is coming (scary day)

Well, it was supposed to be a quiet day. It started out well with Robin, Dad and I hanging out in the bedroom upstairs for the morning and early afternoon.

We weren't supposed to have any visitors or any hospice folks today, but there were a few changes in Robin (mainly that she said she "did not feel well" - but in hindsight there was also a slight slurring of her speech and more spastic movements today), so I asked the nurse to come over and check on her. Around 2:00 Robin started napping. Around 3:30 the nurse arrived and we showed her to the bedroom where Robin was resting.

We tried to wake Robin up but she couldn't be roused! She sounded like she was sleeping soundly, but nothing could wake her - talking loudly, rubbing her limbs. We stopped the IV pain med pump, the nurse examined Robin, and then the nurse started making some phone calls. After a few minutes Robin suddenly came out of it. She seemed OK but groggy, then she started to cry.

Apparently waking up was a good sign. It appeared (at the time) that her problem had been caused by too much methadone, so the nurse disconnected the pump and the plan was to reconnect it at 9:30 this evening, but at a lower dose (a six hour relief from the pump medications). Robin was pretty confused, but she seemed stable when the nurse left. Then things got a little crazy. Robin started to get agitated but we talked to her about things she done and places she'd been too - plus we played some music. She was happy for a long time, but after two hours she started getting confused. She started thinking someone was under the bed, then thinking that someone was just outside the door trying to get in. At one point Dad walked into the room and she asked him to stand against the door to keep it closed, while she instructed me to block the entrance to another door with pillows.

This was too much! We called Connie (Robin's nursing friend) who headed right over (it's snowing here today, but her husband drove her over and then picked her up at the end of the night!). We also called the hospice "hotline" and I talked to the nurse. Today we hadn't kept Robin on her med schedule, so the nurse immediately suggested getting a few drugs into Robin's system- one of which helps with anxiety and calms the nerves. While I was out of the room making these calls, Dad reported that Robin crawled over some stuff on the bed and tried to start looking over the edge for someone underneath.

By the time reinforcements had arrived Robin had calmed down. She was still pretty confused and she still couldn't hold a conversation (even now she can't). The on-call nurse got the methadone pump restarted on a lower dose, but she said (privately to me) that many of the symptoms appear related to disease progression and not to the medication. For instance, when you talk to Robin her eyes will now drift upward and she'll lose connection with the conversation.

I asked the nurse how long Robin has got left (would it be days or weeks) and the nurse said "either". She noted that Robin's young, has no other disease and has a strong will so it's difficult to know.

She also added that everyone asks this question about their loved ones, as if knowing the answer will make it easier to deal with the patient's passing. She explained that when it happens it's going to be like getting "hit by a train" and knowing exactly when it's going to happen would not make the impact any easier.

Visitors?

We're planning a few quiet days from now through the weekend. We have received some inquires about whether it would be appropriate to arrive "unannounced" at the house. We'd greatly appreciate it if folks could call first and let Robin set the pace for any visits.

In order of best ways to contact us, it would be:

1. Home phone
2. My dad's cell
3. My cell
4. My home E-mail address (this is the least reliable method since I'm reading it so infrequently - and I'm way behind!)

Thanks!

Quiet Day

It was very quiet today in the house. Robin was comfortably resting in bed all day.

Her two activities today were taking a shower with the assistance of Colleen (an LPN from Hospice) in the afternoon, and going for a short walk around the upstairs in the evening.

Robin has a shower chair so she's able to sit in the shower and get cleaned up with Colleen's assistance. While they cleaned up, Dad and I went for a twenty minute walk around the neighborhood which was beautiful on such a clear day!

In the evening Robin walked around the upstairs a little. I typically walk backwards in front of her and we hold hands (or interlock forearms by grasping each other's elbows) while she walks. We encouraged her to come downstairs today, but she felt unsteady and she feared that if she went downstairs, then she wouldn't be able to get back upstairs to sleep in her own bed tonight. While in the back bedroom she picked out clothes to wear tomorrow. As she stood at the dresser I could see her repeatedly glancing at herself in a full length closet mirror. We could see her legs, which are getting very thin. I was even taken aback at how thin they looked in the mirror, but it's probably the first clear look Robin has had of herself in weeks. She stands occasionally (like when washing her teeth in the bathroom) but her legs twitch and move constantly as if they're running out of strength to hold her up.

She still has some pain but it's decreased from what it was earlier in the week (plus it's controllable) and she is much more capable of holding a conversation. Much of the time she's groggy from the pain medication, but it seems like a fair tradeoff considering the improvement from the "quality of life" she was experiencing on Tuesday.