No Good Deed

...goes unpunished.

Another Change

After a very long and arduous night Sunday, yesterday we changed Russell's medications dramatically. We changed anxiety medicine to a different anti-psychotic. We added another pain medication. Both of those were a good thing. His afternoon nap was almost six straight hours.

Pain Explained

The massive pain he felt on Sunday was the cancer pushing into his spine. It caused him to jump around and made him very agitated, as you can well imagine.

Monday, he was having a hard time moving his legs before his nap. When he awoke, he had lost the use of his legs. From what testing in which he would participate, his paralysis is from just above the waist.

Remember the Workout

I have begun some physical therapy with him. It is a similar beginner's therapy which I did with my sister when her multiple sclerosis took her from the chest down. For the first time, I am able to massage his uber-ticklish feet.

Simple changes, like the pillows from the couch helping to prop his legs and feet in the proper position, make a huge difference in his comfort level. Pain patches are no longer on his back, but adhered to the smooth skin on his sides: He asked I not shave his chest again. Yes, he is still in there!

A New Dawn

This morning, Russell's eyes were clearer than they had been in days. He was able to talk to me as though he understood the subject. He could not have coffee, like we have had so many mornings. Instead, he had a New York Mets sipper cup to have his Gatorade.

After a long time in the yard with Grandmomma and the dogs yesterday, the children enjoyed their first night in their remodeled room. They got to sleep in this morning. When they are awake and I have someone else here, I shall take them to school.

Today, Poppa and I shall finish their room, and I shall decorate with their favorite images of Spongebob Squarepants. Poppa is going to attach the headboard, and I am going to dress the bed in richly colored sheets. Each of their names will be on the wall, and each morning a new message for the day will appear on the dry erase wall. Truly, a den of learning!

We shall all enjoy today, for whatever it may bring.

Chin up!
Ann Marie

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The Mind is Willing?

We know the body is weak. What do you do when the mind joins it?

Somewhere in the Middle

Metastatic cancer added to massive amounts of narcotics produces bizarre brain patterns. With cancer having breached the spine, entering the spinal fluid, some cells have traveled to the brain. There, they interrupt normal brain function.

Memories are mistaken for current events. Dreams find their way into conscious conversations. Current events mimic dreams. Then, there are the moments which are scary.

Talking during sleep is common on narcotics, especially the powerful cancer treatment pain relievers. They are not your mother's aspirin, after all.

When the sleepy conversation is between Russell and his parents, both of whom succumbed to cancer years ago, I have to wonder how close to the light he is treading.

What you heard was not what I said.

To quote Russell: Did you walk to work or bring your lunch?

If you ask a question and the answer is not only off topic but unintelligible, you have to wonder, "What is the difference between a bat?" (George Carlin)

While this was the exception two weeks ago, today, it is the rule. Simple conversations are becoming increasingly difficult.

This is the condition which follows (but not replaces) the memory loss. Overall, it is far more difficult to overcome. Memory loss is solved by repeating the conversation. The confusion is not so easily to explain sufficiently for anyone to understand.

Who are you?

As children, calling someone by the wrong name was cause for giggles and name calling. Calling a spouse by the wrong name can be hazardous to your health. When your spouse has to call more than three names to remember yours, "disheartening" is a lackluster description of the feeling.

Even the healthiest person can confuse children's names (especially when you have as many as we do). Calling girls by boys' names (and vice versa) is a far cry from the first scenario.

Remember what matters.

Love is what matters. Cancer cannot erode your love for your spouse. It allows you to forgive misspoken words, emotional outbursts and deafening silence.

Stay strong,
Ann Marie

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More of the Same?

Over the last two weeks, the deterioration of Russell's spine has rapidly increased. With it, the cancer presses against his spinal cord and the remaining vertebrae. This pressure causes radiating pain down through his ribs, wrapping his torso in a vice-like grip.

And the doctor says...

More of the same.

• A large increase in the pain patch dosage.
• Although the dosage on the oral pain med was doubled two weeks ago, the doctor ordered another administration and added 20 extra pills to cover the next 15 days.

So, that changes what?

• The stronger transdermal dosage will cut down the number of patches I need to keep on him to combat the pain...we can come down to two at a time.
• I now have to wake him up in the middle of the night to give him pain med.
• Already it is easing his pain, even if it makes most of what he tells me or asks me only occasionally coherent.

Coming Full Circle

Just like a newborn, he needs care every two to four hours. Anyone would hate going from professional athlete to the shell of person for whom I care today. Day by day, and now hour by hour, ability slips away as quickly as it amassed in childhood.

Making Sure to Remember

Just as the morning "pretties" and the goose-down news are important memories, each day I grow to cherish more the present I demanded for our last wedding anniversary.

Family portraits of a time when we were healthy and happy.

Do not underestimate the joy pictures bring later in life when you look back fondly on the happy times. Do not underestimate the power those happy memories have to erase the sad memories at the end.

Celebrate with your spouse, your patient. Celebrate with your children, family, colleagues and friends. Make the most of each day by dancing like no one is watching.

Write that down!

As I have done here, take the time to write down the happenings, changes, successes and everything else. Why? Someone may be helped by what you write, whether in a similar walk to yours or a problem far removed. You may be passing strength to someone in need, even when you feel you have none of your own.

Time to dance,
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

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.