The Sunrise

After years of enjoying pre-dawn coffee and conversation, it was difficult, at first, to adjust to Russell's absence at our sunrise bliss.

Hospice begins.

Although I am certain the full impact of being on hospice care eludes Russell, I see the positive impact on him already.

She is coming when?!?

Since we now have a constant parade of professionals and friends streaming through our front door, Russell has not been allowed to sleep throughout the day, as had become the required norm during chemotherapy. This, and a doubling of narcotic pain medication, has produced sleep at the appointed hour, even when the appropriate amount was unattainable.

Morning Meetings

When Veronica comes in to kiss her father "Good Morning" at 0545, more than half the time, Russell is awake to receive his morning love and deliver the appropriate "pretty" compliment to her before she goes to school.

Nicholas has discovered which of my pillows upon which to lay his head without disturbing Russell's precarious, pain-relieving position. He watches the morning news with Daddy.

Stabilizing the time he spends with the children has been be healing for them all.

It's my turn.

After the children are safely tucked on the bus, I enjoy a cup of coffee over morning meds (a meal on their own) for both of us. Even though he does not have the lust for our common beverage which birthed our dating practice of relaxing together, he can again speak with me of the day's itinerary, morning news and some interesting tidbits left over from drug-induced dreams.

Even if the line blurs routinely between reality and dreams during our morning conversations, the lucid portions are reminiscent of a time, not so long ago, when juggling 22 family crises, pets, household, business, charity and community was typical fare for sunrise coffee.

Postponed

On the days when our sunrise meeting is postponed until closer to lunchtime, we maintain our routine of talking everyday. More often, I have the same conversation with him later in the day when I report progress, as he has forgotten the original conversation.

Either way, my sunrise is back. The final flushing of the chemo from his system has significantly improved the quality of time we spend together, which is far more important than the length.

A brighter day awaits!
Ann Marie

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Who is the bigger idiot...

...the village idiot or the one kidnapped by the village idiot? (Zee, Antz)

Yesterday, we delved into the mental side effects of narcotics associated with relieving cancer pain. By the sound of numerous effects, an air of irresponsibility appeared. I need to clear the air.

What are you doing, doctor?

Pain relief. You will note the previous fragment actually has a period after it.

The physical pain associated with cancer and cancer treatment is phenomenal. In order to cope with the pain, narcotics are a way of life, despite the side effects. In the doctor's (and often the patient's) mind, relieving the pain is worth the side effects.

Are you serious?

First, do no harm. -Hippocrates

Every doctor takes the oath. Human compassion demands to relieve suffering wherever it is found.

Pain is the body's natural receptor for bad behavior. -Ann Marie Dwyer, paraphrased from Taming the Terrible Twos: A Parents' Survival Guide

Bad behavior is not always defined as the patient's bad behavior. Sometimes, it is the body acting badly. Other times, it is the body acting badly because of the patient's having acted badly.

What choice is there?

Let me posit a scenario for you:

You go to the medical doctor with a headache. That small pain is what triggered your visit, since his job is to relieve pain.

He gives you a pain reliever to alleviate your suffering right now, but orders tests.

When the results come back, he tells you he knows there is a tumor growing in your head. Right now, you feel very little pain, but if only the pain is treated, you will lose all motor function within weeks. No walking. No writing. No talking. No eating. No caring for yourself or others.

He stands there and looks at you waiting for your question: What should I do? In his mind, he knows he needs to see other patients and has a golf game at 4:00 o'clock. He instinctively writes a prescription for narcotic pain control while he waits. His job is to relieve pain. You have options.

One from Column A and up to Two from Column B

Column A contains:

1. Nothing: Pain will increase, and death is imminent. (This is a full meal and comes with no condiments from Column B.)
2. Surgery: Absolutely no guarantee of cure; carries a chance of death in and of itself.
3. Dietary therapy: To reduce the intake of free radicals, increase the vitamin intake and boost the body's immune system to fight the tumor.

Column B

1. Radiation: Not a cure, but a stop gap to reduce tumor size and therefore pain and suffering.
2. Chemotherapy: Not a cure, but weighing the side effects against death...
3. Nothing. (This dessert ends in death and is not accompanied by anything else in Column B.)

All dishes served with a bowl of narcotics and vitamins to combat the side effects of the meal.

I'm not that hungry.

Before you say that out loud, consider the finality of death. What would you endure not to die?

Next, we will look into what you need to know before you decide how hungry you really are.

Trying each day,
Ann Marie

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A Moment of Silence

Rather than the post I intended for today, I feel compelled to update you on our situation, which will expound in personal detail the scenarios.

The Day of Truth

As I revealed, today was the day for a computed tomography (CT) scan. The results from today were compared to the results I posted on March 25, 2010. Do note, the first chemotherapy treatment was administered on January 19, 2010, thus marking three months since the first treatment.

As of today, the mesothelioma has failed to be curbed by the chemotherapy. Its resistance has resulted in further thickening of the pleura and advancement to nearly 90% encasement of his right lung.

The adenocarcinoma (tumor under his scapula-shoulder blade) has continued to grow. It now has broken the fifth rib, bringing a total of three destroyed ribs. It has advanced along the bone and has begun destroying the right side of both the T3 and T4 vertebrae. These are the thoracic (chest) vertebrae or the tenth and eleventh from the skull. They are opposite the sternum (breastbone).

No mention was made of affected lymph nodes, and no other major organs have been affected.

The Hard Place

With an unresponsive type of cancer which is neither operable nor a candidate for radiation, the choices are limited to two:

1. A different blend of chemotherapy drugs with pain management
2. A pain management only therapy

Yes, the second choice is not fighting the cancer with traditional medicine.

The Rock

Russell is on a chemotherapy regimen which is the industry premium for treating lung and bone cancers, among many others. The chemotherapy has depleted his body. He has lost more than 30 pounds in the last 60 days. Chemotherapy causes nausea, dehydration, mineral deficiencies and other similarly appetizing side effects.

His blood levels are dangerously unbalanced. The comprehensive metabolic panel (CMP) blood test reveals the chemicals have damaged the vessels going to and from his liver, pancreas and kidneys. This type of damage is irreversible and causes the organs to function improperly.

The Question

Is it better to live with the pain associated with the cancer and the chemotherapy or simply live as well as you can managing the pain of the cancer?

This is not a choice I may make for him. Russell must decide for himself how he will live.

Holding on,
Ann Marie

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The Apex

Yesterday was the day after chemotherapy. By far, it is the best day of the cycle.

Full of it!

With liters of saline watering down the poison, Russell's blood volume was good. His heart rate was down from its normal 120+. His color was not the pallor of last week. The potassium and B12 gave him a boost of energy akin to the non-stoppable, ever-readiness of our children. I was ready to take full advantage of events others take for granted: We were going to tackle spot shopping.

Load up!

The children are home from school for spring break. I asked, "Who wants to go to the store?" To the credit of the school's speech pathologist, Nicholas raised his hand and said, "I do!"

Veronica asked, "Where are we going?" Ever the social director, she needed the itinerary.

"We are taking Daddy to the hospital for his medicine, and then we are going shopping. Do you want to go to the store?" Instantly, my mind's eye saw her with a pencil behind her ear, clipboard in hand, bird-dogging her help.

Getting everyone in the car, a mild adventure on a good day, was a chore with which Russell helped. (Victory!) He grabbed Nicholas' hand and out the door my men went.

Pick a channel.

Daddy likes light '80s. Veronica likes turn of the century NY clubbing music. Momma prefers classic '60s rock & rock. Since Veronica asked for a specific song before I turned on the player, clubbing music it was.

Halfway through the trip, Daddy started signing, "If I were King of the Forest" (1939 Wizard of Oz). Veronica was delighted and learned the words before we got to the hospital.

I am glad my car knows its own way to all the places we go. The ocapella chorus, of questionable quality, was as entertaining as the morning and evening chorus our hounds use to serenade us each day.

The smiles made my heart soar.

"I want hamburger chickens."

In the unending attempt to put weight on Russell, when have instituted a tradition: McDonald's after the hospital. Russell gets a high-fat sandwich. I get a fish patty. Nicholas gets French fries (his second voluntary vegetable). Veronica gets "hamburger chickens". She knows we go to get hamburgers, but she gets chicken nuggets. To her mind, they are "hamburger chickens".

Shoot me before Wal-Mart.

The sheer size of what I consider a microbial store, wears Russell. He does well to travel 300 feet at a clip before sitting down to catch his breath. We made a full lap of the store with Russell even traveling a few aisles to retrieve what interested him.

Interest alone is a victory. For more than three weeks, Russell has had no appetite. I have been unable to entice him to eat even his dyed-in-the-wool favorite foods. For the silver lining, the dogs are eating well as a result.

Back to the road!

With everyone having gotten a toy (Russell, too), we loaded up for the 35 mile trip home. A vibrant conversation ensued, with all occupants in participation. Nicholas even tried to keep up with the melody of the songs.

Please stow your tray tables as we prepare for descent.

We stopped by the mailbox. Russell rightfully fussed it was brimming. The mailbox has always been his job, but the quarter mile round trip to the mailbox is more than he can handle. Yes, our front yard is a bit over one-tenth of a mile.

I am not fond of snail mail. My paraplegic sister has been my postal ray of sunshine. We send each other cards and hand made postcards. She maintains, "It is so nice to go to the mailbox and get something from someone who does not want money." She is right.

The children were happy to bring in merchandise and help put everything away. The dogs were glad to see us with a full box of French fries. Russell was tired, but fulfilled from the trip. I was happy we had spent the time together.

Laughter is good medicine.
Ann Marie

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Is this the rock or the hard place?

For the last few days, Russell and I have discussed how bad the chemotherapy affects him. We had to face a round of poison yesterday.

I am bulletproof.

The day after chemotherapy is the best day. The body is fully hydrated with a high potassium level. He has slept during his treatment. His eyes are clear and sparkly. Russell has energy and the desire to "go".

The mind is willing, but the flesh is weak.

I have to be really careful as I rain on Russell's parade. Although he feels "perfectly fine", I know the poison is coursing through his veins. It is destroying the good indiscriminately with the bad.

Having to be the voice of reason after weeks of cajoling to get him to do anything feels like I have horns and hooves. No matter how good Russell feels, I have to curb his pie-in-the-sky desires to be the husband I married. The alternative is disastrous. He does not want to understand his body is still as fragile as it was yesterday, despite how "good" he feels.

A Mylar Balloon

Russell's body floats through chemotherapy like a balloon. The day after chemotherapy he is buoyant, physically and in spirit. Over the next ten days, he slowly deflates and hangs, still shiny, just above the floor.

When the nadir hits, normally on day 13, sleep is the only solace available to him.

Starting the next day, I have a race to fill him back up (with healthy calories, spiritually and fluidly) before it is time to poison him again. Realistically, I cannot undo in seven days what took the poison two weeks to do. When I pump him up, I am using a bicycle pump instead of an industrial pneumatic pump.

Bottled Poison vs. Bodily Poison

The question du jour is:

Is it better to have the poison injected or let the poison within run its course?

This is not giving up. This is reality setting into our life. Each successive treatment means the balloon is less filled before the poison goes into it. Each time it deflates a little further than before. The deterioration is easy to see.

On the other hand, the cancer is not as easy to see. The pain of the broken ribs: See it. The difficulty breathing: See it. The trouble eating: See it. The tremors: See them. The lightheadedness and dizziness: See it. The oxygen-deprivation dementia: See it; hear it; agonize over it.

But what is the cancer really doing?

Not my choice.

If our roles were reversed, I would have forgone chemotherapy. If God is calling me home, I have my ticket in my heart. Mortgage be damned: I would be enjoying the moments I have left after I settled my affairs.

But the roles are not reversed.

The doctor was reluctant to allow the treatment yesterday. Reports on blood work and the overall health report explained how empty the balloon is. Russell wants to fight, and the doctor respected his wishes.

The choice is coming.

On April 19, 2010, we return to the hospital for a computed tomography (CT or CAT scan) of his chest and abdomen to reveal the current state of the cancerous tumors and plaques. Based on the results of that scan, the doctor may refuse to administer any more chemotherapy. At that juncture, the choice may not be Russell's any longer.

Stay strong,
Ann Marie

Visit Virginia's Dream. International shipping available on request.

Who is the bigger idiot...

...the village idiot or the one kidnapped by the village idiot? (Zee, Antz)

Yesterday, we delved into the mental side effects of narcotics associated with relieving cancer pain. By the sound of numerous effects, an air of irresponsibility appeared. I need to clear the air.

What are you doing, doctor?

Pain relief. You will note the previous fragment actually has a period after it.

The physical pain associated with cancer and cancer treatment is phenomenal. In order to cope with the pain, narcotics are a way of life, despite the side effects. In the doctor's (and often the patient's) mind, relieving the pain is worth the side effects.

Are you serious?

First, do no harm. -Hippocrates

Every doctor takes the oath. Human compassion demands to relieve suffering wherever it is found.

Pain is the body's natural receptor for bad behavior. -Ann Marie Dwyer, paraphrased from Taming the Terrible Twos: A Parents' Survival Guide

Bad behavior is not always defined as the patient's bad behavior. Sometimes, it is the body acting badly. Other times, it is the body acting badly because of the patient's having acted badly.

What choice is there?

Let me posit a scenario for you:

You go to the medical doctor with a headache. That small pain is what triggered your visit, since his job is to relieve pain.

He gives you a pain reliever to alleviate your suffering right now, but orders tests.

When the results come back, he tells you he knows there is a tumor growing in your head. Right now, you feel very little pain, but if only the pain is treated, you will lose all motor function within weeks. No walking. No writing. No talking. No eating. No caring for yourself or others.

He stands there and looks at you waiting for your question: What should I do? In his mind, he knows he needs to see other patients and has a golf game at 4:00 o'clock. He instinctively writes a prescription for narcotic pain control while he waits. His job is to relieve pain. You have options.

One from Column A and up to Two from Column B

Column A contains:

1. Nothing: Pain will increase, and death is imminent. (This is a full meal and comes with no condiments from Column B.)
2. Surgery: Absolutely no guarantee of cure; carries a chance of death in and of itself.
3. Dietary therapy: To reduce the intake of free radicals, increase the vitamin intake and boost the body's immune system to fight the tumor.

Column B

1. Radiation: Not a cure, but a stop gap to reduce tumor size and therefore pain and suffering.
2. Chemotherapy: Not a cure, but weighing the side effects against death...
3. Nothing. (This dessert ends in death and is not accompanied by anything else in Column B.)

All dishes served with a bowl of narcotics and vitamins to combat the side effects of the meal.

I'm not that hungry.

Before you say that out loud, consider the finality of death. What would you endure not to die?

Next, we will look into what you need to know before you decide how hungry you really are.

Trying each day,
Ann Marie

Visit Virginia's Dream. International shipping available on request.

I am not lost...yet!

My absence has been noted by many. Thank you for the emails and cards. For those who are new or may not have heard, my husband Russell has been diagnosed with cancer. Once this journey is complete, we will return to the investigation of schools for special needs children.

Russell is quite the anomaly. He is only 45, has never worked in a typically high risk field and has been diagnosed with mesothelioma. Additionally, he has an adenocarcinoma tumor on the back of his right lung.

This tumor has broken through two of his ribs. The cancers have spread to more than 15 surrounding lymph nodes.

As most of you do know, we have two autistic toddlers (four and five) at home. This has been particularly difficult for them to understand. Daddy cannot do things with them any more. He has an oxygen tube connecting him to the machine.

They understand not to play with Daddy's new things. I consider this quite a victory.

Over the next few posts, we will travel down the understanding of living with a diagnosis of death. While the prayer chain continues to deliver, the prognosis is grim shy an intervention from God.

I want to delve the physical, mental, familial and spiritual levels to living day-to-day with a devastating, white elephant in the living room.

Until next time,
Ann Marie

Visit Virginia's Dream. International shipping available on request.