How Many Rats Are There?

"Just when you are sure you have figured out how to win the rat race, along come faster rats." Author Unknown

The Big One with Tufts on his Ears

Each time Russell was awake, he enjoyed fellowship with someone. Russell's doctor and his wife came with a pastor of Team Church. The topic of conversation: Baseball. World Series, who remembered which player, hopeless fanaticism for teams of questionable reputation, reminiscence of Russell's ball slinging days. Lots of smiles and a heartfelt prayer.

The Skinny One

The paralysis is moving further up Russell's body. His kidneys have ceased function. The best I can do for him is cushion him with the umpteen pillows which so annoyed him when we first married; keep his pain to a minimum; and cradle his head while I speak smilingly, softly.

The Momma

Momma brought him comfort spending time with him. It is just what Mommas have done since the first child was born into this world.

The Grey One

Poppa told him jokes which made him smile. A warm heart is good for the soul. Poppa also helped me with those things Russell would have loved to have done, had he been able.

The Teeming Pack

The animals have all come to cuddle, or lick, or in the case of our 16-year-old Tom cat...ask where the treats are hiding.

The Spotted Ones

Nicholas rubbed his fresh hair cut on Daddy's hand and smiled as he rubbed snitched chocolate from his fingers onto Daddy's Optimus Prime blanket. Veronica announced how terrific her room looked, so Daddy could see it in his mind's eye the way he did when we bought the materials.

The Quiet One

Our hospice nurse came for what she tacitly knew was the last time. In her gentle way, she let me know she would be there for me when the time came.

The Sprinter

Our speech pathologist graciously dealt with tired little muggers when they arrived from school. She marveled at the youth of my parents, and her heart ached for our family.

The Latecomer

News does not always travel like wildfire. Sometimes the flames blaze so brightly in one spot, other trees take longer to singe. Email came from the pastor's wife of Christ Fellowship Community Church (just south of the North Carolina line) received the news only today. She offered the sweetest of support.

The Distant One

MAGIC Foundation co-founder called to keep me on track with my children's disorders and remind me she would remind me again of things I need to do when I am sane (ish) again.

The Pregnant One

Vanessa will have the baby either tomorrow or be scheduled for Monday pending the outcome of lab work run today and tomorrow. So if your guess was the pop-up timer was right, score one for yourself.

The One Running the Wrong Direction

That would be me. Try as I might to reconcile this travesty to the pragmatic, practical world in which I operate...Alas, I cannot. Love may be a many-spendored thing, but it is a beautiful, sweet-smelling rose covered with thorns.

Dearest Lord, may we have one more dawn?
Ann Marie

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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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Which one first?

Half of you would like the good news first. I prefer to end on the better note: My own version of the spoonful of sugar.

The bad news first.

While we battle cancer here, at home another family member battles at nearly the same place. Mary Jo is my stepmother. Her Mother's Day news was not as wonderful as we would have hoped. Her PET scan and release from the hospital yesterday was difficult.

After a long bout with breast cancer, Mary Jo's PET revealed the cancer has metastasized to all of her major organs and her bones. She was released into hospice care.

Meanwhile, back at the ranch.

Russell will be the topic of conversation for the hospice caregivers and the oncologists. Russell has reached the point where the discussion is of a pain pump: Twenty four hour continuous release morphine. The mets delusions now get him out of bed to take care of things which are only real inside his head.

Now for the good news.

I will be posting a picture at the conclusion of Momma and Poppa's stay of yours truly climbing a tree, provided Momma used my camera properly.

Yesterday, for my Mother's Day gift, we harvested oak trees and bluebonnets for my yard from the game preserve across the street from my house. We also harvested a specific breed of pine tree which makes giant cones and has such long needles its branches have the look of pompoms. These will be Momma's take home gift from South Carolina.

Buds which arrived on Friday in anticipation of Mother's Day pushed out double-bearded blue irises by Saturday. Sunday brought Asiatic lilies opened wide like a sailor's sunrise.

I am not yet a grandmother, you see, that would not have been a grand Mother's Day present. My angel still has 2.5 weeks to go. Do you think she will make it? What if I told you that picture was more than a month old? Did that change your answer?

Even though the pop-up timer is fully extended (her navel), Caden needs to stay put at least another week. We would be happiest with two.

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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Living Better

As the bones in his spine erode, Russell is in an increasing amount of pain. While I stand at the ready to change patches and dispense a pharmacopoeia, it does little good...or does it?

Better Living through Pharmacology

Yes, we both subscribe to this practice. The most important pill I give him each day is his antidepressant. Stop blinking. I did say his antidepressant.

Remember my last post? When you are relegated to the bed without reprieve, you have an enormous amount of time to think. And when you know you are on your way, dying comes into the contemplation zone often.

Keeping his depression at bay is as important as keeping his pain in the tolerable range.

Keeping my depression at bay is necessary for our family to continue to function.

Going Natural

The children are not in a position to be using drugs to divert depression. There are natural ways around it. A firm schedule is the best medicine for them. There is a safety net when you always know what comes next.

A "good morning" routine which includes snuggles and kisses and laughter starts each day. After school comes therapy. Next is playtime...indoors or out, weather prevailing.

Dinner, a bath and more snuggles with giggles end each day. The blissful slumber which follows ensures the morning smiles.

Regular exercise and proper sleep is the lesson we all should learn.

The Occasional Splurge

For under $5, we can have a party. Little hands help complete the cake mix. Cupcakes are lovingly frosted...Some with an icing knife...Some with little fingers. A tea pot filled with juice and we are ready for a great party.

Veronica will even take shopping bags or shoe boxes and fill them with toys as presents. A $2 bag of balloons will keep Nicholas busy playing solo volleyball while we girls rule the kitchen.

What I am splurging is not money, certainly, but time: To have the unbirthday party and to clean the icing from the ceiling fan (You really do not want to know.).

And when Daddy gets up, he gets one, too. Let's just keep the finger icing secret between us!

Chin up,
Ann Marie

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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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A River in Egypt

Denial. I watched it happen in real time yesterday. I saw the pilot light of cognizance and admission flicker out, and the numbing calm of denial sweep in like a fog in the night.

Being prepared is not enough, sometimes.

With a week's notice, the conductor, porter and engineer daily explaining the trip and standing on the platform at the appointed hour...The train of the unknown pulled into the station with a smoky fury of screeching, sparking wheels and rails. It towered over Russell's consciousness, a stark reality hitherto ensconced in the ethereal future.

"All aboard!" means "Get on the train."

As the doctor saw Russell's darkness set in, he spoke to me in clinical terms to raise his own comfort level. I became the translator.

"We knew this was metastatic cancer from the beginning." Even if we name one cancerous area and develop a treatment plan, it will mutate to escape the treatment and move to another place to become another type of cancer.

"The cancer is unresponsive." No, the chemotherapy did not slow it down. It did calm the lymph nodes. The cancers continued unimpeded along the lung and the bone at the same pace they were traveling before chemo began.

"We have to talk about radiation." No guarantees of pain reduction. Definite killing of the microbial healthy tissue. Definite reduction of breathing capacity. Likelihood of novel centralized and/or localized pain. Short version: Major risk, definite destruction and no guarantee of pain relief.

"Do you want a CT of the head?" No. Knowing for certain would not make the symptoms go away or change the reality of the cancer destroying the vertebrae, the ribs and the lung. If it is traveling along the nerves, as it has the bone, we have already unsuccessfully completed the treatment prescribed for it.

"You need to go home and discuss the decisions you need to make."

A Glimmer of Recognition

"So, we are doing chemo today?" No. Chemo is no longer a choice. It has destroyed more good cells than cancer cells and made no significant impact. Chemo is just making you sicker than you already are.

"So, we are going to do radiation?" No. The risks far outweigh the chance of a benefit.

"So, can I travel?" No. You want to go to New York. You cannot be off of oxygen long enough to fly. You cannot stand long enough to get through security. You cannot sit long enough to fly. You cannot sit long enough to come to the hospital. If you need to go somewhere, call an ambulance.

"So, where are we going?" Home, Russell.

And hospice begins.

Ann Marie

Lord, grant me the serenity to accept the things I cannot change,
The courage to change the things I can change,
And the wisdom to know the difference.

May today bring a light into your life, that you may know your blessings.

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A Break in the Silence

Tomorrow, we face the doctor's look at the results from the CT scan from last Monday. Today, Paige, our home nurse, came to take blood for what I hope will be the last time.

Russell Speaks

During the morning quiet while the children were at school, Russell and I talked about some things which bear on when he will not be here to make such decisions.

"Are you going home?" Some of you know we have been trying to escape South Carolina since the children began school (a whole other blog entirely). Russell had wanted to get me and the children home (Louisiana) before the end came. I hate to hear him apologize for it.

"Are you sending me home?" I am sending his ashes to be interred with his parents. Russell is returning to New York, but not the way he wanted to go. He had planned on returning one more time to say goodbye to the big girls, the big boys, his sister, cousins and nieces. Now, that is no longer an option.

"Why are you still here?" Because in my love for you, I vowed to do just this.

"I'm scared." Hand over the fear: I have a garbage bag to tie up.

"How are you holding up?"

I hear this question at least once per day. Some days my answer is a typically sarcastic, "With both hands." Other days, it is a not so pithy, "I am doing."

I begin everyday with both eyes clearly open.

I laugh with my husband every chance I get.

I tell him I love him every time his eyes open.

I hold my children tightly when they first wake up, come home and before bed. I assure them both of their parents love them.

I find moments when the children can spend some good time with Daddy.

I write.

If I miss tomorrow, forgive me in advance. I am not sure how tomorrow will affect me, but I promise to return to let you know.

Chin up,
Ann Marie

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Needed: One Personal Trainer

Baloney.

Exercise releases endorphins. Endorphins make you feel better emotionally. Two birds: One stone. You do not need someone to plan it for you (and charge you for the privilege).

Sweatin' to the Oldies?

Only if you like the hairdo, striped shorts and that voice. Otherwise, think about more calming exercise.

• Yoga
• Pilates
• Stretching
• Walking
• Dancing (!!!)

Yes, dancing. Even if you are just playing the radio and gigging in the kitchen, the music and the movement will make you feel good.

Walking will help you pound out some confusion and help keep you in good heart health.

Stretching, Pilates and yoga will stretch the stress from your muscles.

Kicking It Up

Have you reached the point where you are seriously considering finding a bell tower? You need some more physical ideas.

• Tennis
• Batting Cage
• Driving Golf Balls
• (Kick) Boxing or Tae Bo
• Jogging or Running

The first four have something in common: Hitting. This particular physical release will do dual duty for you. You are producing a vat of endorphins and channeling your anger/frustration out of your body. You are striking out against your own pain.

Jogging and running are great cardio exercises. The feeling of your own heart beating in your chest is a physical manifestation you still have life. It dispels the tacit assumption you subconsciously made about your life being over.

Rocky Road or Chocolate Chip Cookie Dough?

Just tuck the carton in your pants...that is where it is going. Your diet better look just like the new nutritional pyramid.

Most importantly, it needs to begin with breakfast. No, you do not need a recipe for eggs Benedict (Although if you are out, you may as well order them.). Whether it is a plate of leftover dinner, a bowl of healthy cereal or fruit salad with a yogurt, fill your tank before you start the marathon the day will bring.

What good is a Lamborghini when it has no fuel?

Surfing

Whether channel or Internet, remember what your grandmother told your mother: Nothing good happens after midnight.

Mothers learn to sleep when their babies sleep. With a sick spouse, you have to do the same thing. Your body needs the sleep to re-balance dopamine and serotonin, brain chemicals needed for sanity.

Is the Lamborghini any better with a dead battery?

Pay Before you Pump

Before you can do any good for your spouse, you have to be in condition to care appropriately. This takes not only physical strength but also mental health. Take care of yourself so you can take care of your spouse.

Stay Strong,
Ann Marie

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Now what do I do?

There comes a time when the only thing left to do is watch.

You have made the bed as comfortable as possible. You have administered all the meds. The sponge bath is over. Meals are complete. Your part is done.

But the pain remains. Emotionally, this is one of the most difficult parts of living with a spouse with a catastrophic illness.

It is not about me.

When helplessness sets into your psyche, the number one thing you must realize is:

This is not about you, but about your spouse.

To protect your mental health:

Schedule regular breaks from the action...even if the action is watching your spouse sleep. You need the alone time to process the enormity of impending death. And you have to face this enormity on a daily basis. It is not a one time feeling at the time of diagnosis. Some days, it will be stronger than others. For the sake of your spouse, be strong enough to say, "I need a break."

Break normal chores (the ones piled on top of spousal care) into tiny pieces. If you can only manage one load of laundry or one sink of dishes or sweeping one bathroom, that is perfectly fine.

When someone asks you, "What can we do for you?" Answer: Dishes. Mop. Vacuum. Grab something from the grocery or the pharmacy while they are out on their own errands...whatever it is you may not have finished. Anyone can do these jobs. They will be more than willing to do them for you while you take care of what they cannot: Your spouse.

Use every single hand extended to you...all of them. The sweetest little handicapped lady asked what she could do for me. My answer: Stop by my daughter's grave and place a flower from your yard. I have not been able to go the quarter mile to the graveyard in weeks. This alleviated my nagging burden for leaving the trip untaken.

Things look different.

When you have others helping you take care of the mundane things which would consume every waking hour if left to their own devices, you have the emotional and physical strength to alleviate pain, spend quality time with your spouse and be fulfilled in knowing your life is not crumbling outside the bedroom door.

Next we will talk about the physical upkeep for...not your spouse...yourself, so you can actually be an asset to your spouse.

Chin up,
Ann Marie

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How do you get cancer?

Cancer cells are normal cells which have failed to develop the way they should. As they begin to develop into organ, blood or bone cells, the DNA in the cell's nucleus sends the wrong signals to the cell. Instead of becoming a healthy new cell, it becomes a cancer cell.

Genetics

Since DNA dictates how cells form, cancer runs in families. Each family will pass along the mutated genes which make cell nuclei misfire and create cancer cells. In tracing family history, specific types of cancers and related cancers are easily traced from generation to generation.

Common treatable and survivable cancers (breast, colon, prostate, cervical and skin cancers) are immediately traced through family history. Doctors routinely propose more frequent screenings for those who are predisposed to these cancers

More malignant cancers (leukemia, lymphoma, lung, pancreatic and brain cancers) are pretreated differently. Doctors propose lifestyle changes along with screenings to reduce the environmental risks associate with these cancers.

Environmental Risks

Common environmental risks for cancer include:

• Smoking, snuffing or "dipping" tobacco
• Drinking alcohol
• Poor diet and nutrition
• Unprotected sex and poor sexual health habits
• Working or living with carcinogenic (cancer causing) inhalants such as asbestos, certain manufacturing chemicals and paint
• Continued exposure to carcinogens: insecticides, known cancer-causing agents and radiation-including sun exposure

Skip a Generation

As with all genetic heredity, not everyone in a family will definitely develop cancer. Some family history will help patients break the cycle of cancers in their family lines.

Reducing or eliminating environmental risks can reduce the likelihood of developing a cancer which is prevalent in a family, especially lung, cervical and skin cancers.

There is hope,
Ann Marie

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How hungry are you?

The hunger is the will to fight. Before dismissing a course of treatment, cancer patients must decide how hungry they are to beat the cancer.

Radiation

This course of treatment is not open to all patients. Only certain tumorous cancers can be effectively treated with radiation. Excluded cancers include blood cancers (leukemia), bone cancers (osteocarcinoma), certain lung cancers (mesothelioma), Stage 3 and higher lymphoma and many brain and other organ cancers (pancreatic, liver).

Radiation can also be used following surgery for more survival cancers like prostate, testicular, breast, esophageal, peptic and colon cancers.

Side Dishes

Nausea: Extreme enough to cause painful vomiting

Weight loss: Side effect of nausea and body's natural reaction to radioactive materials

Hair loss: Side effect of radioactive materials

Mutations: Some cancers mutate under radiation. Though the tumor is reduced, other cancers (melanoma) can result from extended exposure to radioactive materials.

If the tumor can be reduced, many times the radiation will cause the remaining tumor to enter remission. The remission, or dormancy of the cancer, can last for as little as a few months or as long as a lifetime.

Surgery

Again, this is not an option for many cancers which do not produce tumors. Some tumors are not positioned favorably for removal. Others are perfect (melanoma). For the ones where surgery is available, it, too, has a plateful to accompany it.

Side Dishes

Anesthesia: General anesthesia (GA) has inherent risks, including failure of organs or appendages to successfully regain function after surgery.

Pain: Though typically to reduce pain, most surgery requires opening of muscles or the skull. Post surgery pain is common.

Recovery: Rehabilitation of severed muscle walls and area surrounding removed tumor.

Amputation: Most common variety is mastectomy.

Failure rate: Not all cancer cells are successfully removed when the tumor is removed. Based on the size of the cells and nature of the tumor, 100% success of cancer removal during surgery is far from guaranteed.

Is your appetite spoiling?

Next, we shall talk about chemotherapy and the option of no treatment. Then, we will talk about the appetizers which accompany every single diagnosis of cancer.

Chin up,
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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Who are you, and what have you done with my husband?

Narcotics are nasty..."There is a reason they call it dope."

Watching the personality of your patient change is difficult, even when you know the reason.

It wore off.

When narcotics wear off, and pain reenters the picture, the voice coming out of the body is physical pain. Along with physical pain are myriad emotions associated with the pain.

• Frustration: The inability to control the situation of the disease and pain.
• Grief: The inability to do mundane daily activities, which, in retrospect, were not so horrid chores.
• Anger: The combination of grief and frustration.
• Self-Pity: The confusion caused when control over one's own body is lost.
• Shame: Loss of pride at admitting someone else must care for even the most basic of needs.
• Denial: The desire to be in another circumstance.
• Blame: The confusion leading the patient to believe the condition is the fault of the caregiver.

Pain is a way of life.

Sometimes the cure is worse than the disease. Poking and prodding and invasive maneuvers to get information can make your patient (and you) believe the treatment has an evil intent all its own which is equal to or greater than the disease's intent to kill.

To quote Disney's Genie from Aladdin: You would be amazed what you can live through.

Pain is a way of life for a cancer patient. Unfortunately, the narcotics in smaller doses only diminish the pain to a "bearable" level. Equally unfortunate: In higher doses, the narcotics remove the patient from reality.

Maybe that is not so bad?

Many people would run away if it were possible. They would manage their pain to the point of barely being conscious of their surroundings. This is an informed choice to be made by the patient with the consent of the doctor. Despite what the caregiver may desire, this is not a choice she can make.

What are the drawbacks?

For the patient, truly few...pneumonia is the largest threat, followed distantly by bedsores. Poor appetite can potentially cause other problems.

Cancer is not only a physical disease. The mental drawbacks are mighty. Let's look into a few:

1. Loss of long term memory
2. Failure to produce short term memory
3. Lethargy, lack of desire
4. Poor attitude
5. Poor impulse control
6. Inappropriate or flat affect
7. Mild dementia-like symptoms
8. Overstimulated REM sleep

Don't some of those have an upside?

To say they do not would be a lie.

1. This is more a problem for the family than the patient. As life comes to a close, family wants to rekindle memories of bygone happiness. Your patient may not remember enough to actively participate in such reminiscence.
2. This is a problem for the part time caregiver. Your patient will not remember activities of the day and self-report erroneously. This patient should not have access to medications or poisons. For all intents and purposes, this patient must be treated as a child for all important matters.
3. Lethargy can lead to surrendering the will to live. Caregivers need to be particularly cognizant of the depth of the lethargy. At all times, engage the patient in your own activities with him. Be aware of all activities with which you could interest your patient.
4. This understandable drawback is associated with the disease as much as the treatment. Do not wear your feelings on your sleeve. Take insults and apparent swipes with a grain of salt. Rarely are they intentional, but they are a needed release of anger.
5. Reduced inhibitions are a side effect of narcotics, but they are also a side effect of anger and frustration. Take particular care your patient does not put himself in harm's way in activities he may feel he can successfully attempt.
6. Engage your patient in conversation about something within his sight. Trigger any emotion which would allow for a change in his affect. Whether or not you are successful, report this to the doctor. This is an end-stage symptom.
7. Memory loss in short or long term will produce dementia symptoms. If your patient begins a conversation about a time period in which he has never lived, play along. Do report this to his physician.
8. REM sleep often extends for a short period into wakefulness. It is another manifestation of the poor impulse control during wakefulness. If your patient talks to you from REM sleep, talk back in a non-committal manner. Do not steer the dream in a certain direction. This is his mind coping.

The mental aspects of extended narcotic use are more difficult for the caregiver than the patient since the patient is not cognizant of the side effects as they occur. Seek help for yourself as routine to discuss your feelings about losing the personality of your patient.

Chin up,
Ann Marie

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Around the world in 80 minutes?

Where did you plan to take your dream vacation? Go virtually. Print a brochure, read a travel review, download a native recipe and make an afternoon of it. Eat authentic food and have a conversation about what you learned.

If you patient is snoring, no need to delay the trip.

• Read the brochure, and use your mind's eye to insert yourself into the scene.
• Call up a friend to whom you have not spoken recently. Discuss adventure.
• Play music from your destination.
• Get a movie about or set in yout destination.

Close your eyes, and let your spirit free to roam your surroundings. Yes, this is permission to daydream.

Where is the day care?

Cannot pull it off to the pitter-patter of little feet and curious hands? Bring them along.

• Do a native craft with them.
• Discuss the indigenous wildlife while they draw the animals. Do not correct the purple fur on the lynx. It is their virtual vacation as well.
• Sit in the recliner and rock to the sound of reading aloud the brochure. You have just been promoted to tour guide.
• Dress up for a native dinner party. See how imaginative the children can be in recreating native costumes from their own toy boxes and your closet.

Exercise that long dormant inner child.

To keep or to toss, that is the real question.

Organize a seldom used storage space. You can always find laughter in the closet and the cabinet.

• Stroll down memory lane by seeing which clothes you can donate. Laugh out loud when you see that double-breasted leisure suit, right before tossing it in the donate box.
• Rearrange the pictures in your photo albums and consider putting some of those into the frames in the Hall of Fame-ily.
• Look under the bathroom sink. Look at dates and wonder why in the world you ever kept it in the first place.
• Rifle through the stack of magazines strewn about your coffee table. Remove the address labels and toss them in a sack to take to your patient's chemotherapy waiting room. Are there not some books on the shelf with which you could part? They should go as well.
• What floor covering is in the bottom of your closet? Rediscover it. See if you can fill a garbage bag with items to either donate or pitch.

So what does this accomplish? You have...

...exercised your right to control your living environment.
...harmed no (human) animals in your quest.
...strummed the charitable strings in your own heart.
...rightfully identified there are those who are not as fortunate as yourself.
...lifted a burden off your heart.
...improved the living situation in your home.

And it did not cost you one penny. There is no better reward than one without a price tag.

From my inner child,

Keep playing,
Ann Marie

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Deafening Silence

With fans, compressors, dogs, a crotchety 16 year old cat, a telephone and children, one would think my house would never be quiet.

You are officially on ignore.

Some sounds I never hear:

The chirping of the fire alarms. No, the batteries are not dead. They are wired directly into the house. No, I do not know how to make them be quiet. Yes, they pass the monthly test. Yes, I can ignore it every 1.5 minutes (more than one beeping).

The neighbor's hounds (English bulldogs) barking at my hounds (Tennessee treeing coonhounds).

Snoring, despite species. Except for my parents (Sorry, Momma & Poppa.), snoring is a background noise to which I accomplish much, including slumber.

Trains and F-16s. We live one-quarter mile from a terrorist training target for a nearby Air Force base. No less than 15 fighters fly over the house each week. The only time a train wakes me is when it is late, and I do not hear it...freight train or subway.

The sound of little feet jumping on the bed.

Rip the knob off!

Some sounds enter my ear at a volume which would wake the dead:

A baby belch, cough, rolling over or kicking in a crib across the house with the doors all closed between us.

Apnea: Canine, feline or human. From a dead sleep (every time my eyes close), I am sitting up in the bed or staggering to the correct room to place my hand on someone's chest.

The sound of little feet hitting the floor in the middle of the night.

Silence is not golden.

Since my retirement, I have grown used to talking to Russell all day long. If he was at work, he used all our minutes to talk to me. Once he retired, we talked in person.

If you would have asked me ten years ago, I would have wished for a day like yesterday. The children were home from school (spring break) and one of my spotted dogs was in the house.

All through the house, not a creature was stirring. Cash was holding down the couch. The children were "camping" in the center of the floor on a brown blanket (island) surrounded by blue ones (water). Russell was sleeping so well, even Mr. Saw Mill was not snoring.

I took advantage:

• Eight loads of laundry
• Load of dishes
• Chili con queso
• Appliance cleaning
• Shoveled evidence of children
• Vacuuming
• Carpet shampooing
• Paying the last bill this month
• Trash collecting
• Video games
• Email catch up
• Lesson plans
• Career Day planning

So, for what do I possibly have to complain? No feedback. How lonely it is to float through a full day without speaking to another human, and in my case especially another adult human.

At least I could come in their rooms and see them to ensure they were still here.

To quote Momma, "Be careful what you ask for because you just might get it." I realize now how much the 47 telephone calls per day and hearing "Mommaaaaaaaaaaaa" twice as often was not half as annoying as I thought it was.

Now, I can tell you verbatim the last conversations Russell and I have had. Just as I would never dream of letting him walk out the door or get off of the telephone without hearing me say, "I love you," he will not close his eyes to rest without hearing it.

The Leprechaun was here.

The gold here is words will not be left unspoken, which happens to be a good practice regardless of health, distance or attitude.

Chin up,
Ann Marie

Photo Credit: Russell and Ann Marie's dog Cashisti (Cash) in South Carolina, 2009.

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Yes, it is contagious.

No, not the cancer, but the feeling bad.

Medical Records

My medical records look like the IRS code in hardback. People close to me know I act and operate healthy as a horse, but under the skin I am damaged goods with irritable bowel syndrome being the intense, stress-triggered reminder my body is not 100%. There are other irritants I have banished, most notably migraines. One (week's worth of) blog post we will discuss how to cope when caring for someone infinitely sicker than yourself.

Sympathy Pain

Even though it is psychosomatic, sympathy pain no less painful. Men get it when their wives are pregnant, especially morning sickness. Caregivers often feel the physical pain of the spouse fighting cancer. Just as the nurse asks you to rate the pain on a level of one (just noticeable) to ten (the worst pain you have ever felt), when you ask your spouse how he feels, be prepared to have your number go up with his answer.

Pets and Children

Just like the cat snuggles up to you when you do not feel well, and the dog insists on kissing your face and cleaning your "paws", your pets absorb some of the pain. Give some extra attention or perhaps a treat to console your pet.

In children, it does not usually manifest in physical pain but, instead, as emotional pain. Look for tantrums at even favorite activities and foods. Notice seclusion. It is a red flag your little one is hurting and is your call to duty as a parent to take action.

Depression

The single most common denominator for all cancer patients is depression, followed closely by major depression. From the moment of diagnosis, depression plays the part of the wet blanket...sometimes the wet, lead blanket.

Depression can cripple an otherwise healthy person. Imagine compounding it with catastrophic illness. Consider it exacerbated by a factor of ten.

Now, imagine depression of the caregiver. The point comes where there is no return from the cancer. Through the foggy fugue of depression, the caregiver is responsible for such cheerful activities as planning to distribute an estate, sitting at a bedside without acknowledgement of the patient and making funeral arrangements.

Guaranteeing the caregiver's mental stability is paramount to ensuring the patient's emotional state. It is only faked by the most Academy-awarded actors. The caregiver needs to maintain mental health to remain strong enough to care for the patient.

Insomnia

Insomnia is a symptom of mental health, medications and/or the lack of both. Do you know how easy it is to start a vehicle with a dead battery? Sure, some good Samaritan has a set of jumper cables, but you are the good Samaritan for your cancer patient. Without proper sleep, you will not and cannot give the quality of care your patient needs.

Your brain needs sleep to process information clearly. Have you noticed yet the effect of narcotic pain medications on your patient? You do not need insomnia putting you on par with him.

Talk to your doctor if you are not getting enough sleep. Based on your medical history, you may need vitamin supplements, sleeping medication, both or neither.

Germ Transportation

A cancer patient's immune system is compromised by the treatment, especially chemotherapy. Before you come in contact with your cancer patient: Scrub, change into fresh clothes, wear gloves/mask, spray an anti-bacterial agent on your shoes. What is a simple sinus infection to you will grow up to be pneumonia for your patient.

Who am I?

This is three fold: Your very own split personality.

First and foremost, you are a spouse who loves your patient more than any other persons trying everything in their power to heal your spouse.

Second and able to be deferred, you are a segue nurse. You can recognize symptoms which are unusual which a doctor or nurse may not know is unusual. You can take any level of professionalism your learning curve will sustain.

Third and most confusing, you are now your patient's spouse. As the medical team members come and go, you are not considered an equal in terms of intervention, interaction and information. Likewise, you are not considered your own entity, but rather a surrogate for what your spouse may not be able to understand or follow.

Where is the mirror?

Find a mirror and remind yourself. Whether you are looking into a compact or a puddle of water, look at yourself. Speak out loud.

"I am (state your name). I love (state spouse's name). This is the sickness I vowed not to defect, but to persevere. I am important to my spouse, who needs me. I am a whole person who is able to help."

If you do not think you can recite the speech, concentrate on the Spirit in your heart. The words will flow freely thereafter.

Chin up,
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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Sick and tired and tired of being sick.

You knew from the date of diagnosis the sick days would be closer together and more intense. Coping with involuntarily becoming a single parent with another "child" can be stressful.

Be reasonable in your expectations.

Reasonableness is likely the last feeling you are willing to identify in your daily routine. But the fact remains, he cannot help do some of the simplest things...and those will be the first you notice. The first one I noticed: The litter box. Far and away, it is the chore I enjoy the least. I would sooner scrub the oven with a 2mm camel hair paint brush.

Look for the silver lining. You have a new perspective to appreciate the things he did for you regularly. Take a minute to be thankful to and for him, verbally and in prayer. Do you need to ask forgiveness for not being more appreciative?

Be reasonable for what you expect, and understanding for the things you cannot expect.

Eat the elephant.

Anyone can eat an elephant if they do it one bite at a time. Some pieces will be tough and gamy. Chew those first., but reward yourself with a tender bite next.

When you get to the gristle, share the meal. You are surrounded with well-intentioned people who are asking what they can do for you. Smile and, with a sunny expression, proclaim, "Chores!"

If you are uncomfortable asking for someone to do your chores, ask them to keep you company while you do them. If they volunteer to help, the offer is coming from the heart...take it to heart and let them.

Does anyone have a catapult?

You know there are some things you simply cannot do. If it is something which must be done, recruit two or three sets of hands to help you or to just do it for you. If it is something which may be skipped, skip it. Before you do, find your reflection, forgive yourself for being human and remind yourself staying sane and healthy is more important than edging the lawn.

Escape.

You are the one who is caring for the home and all of the residents. Take a vacation from your responsibilities. How?

• Take a walk with your dog or your best friend.
• Drive and look at the countryside.
• Talk to your pastor or counselor.
• Write in your journal or blog.
• Read a book on the porch with a tea or a decadent slice of cake.
• Go to the batting cage.
• Get a manicure or pedicure or, better still, both.
• Meditate.
• Listen to your favorite disc.
• Take a hot bath or shower with the door locked and the telephone off.

Even if all you have is thirty minutes, use it to take some necessary "me time". Removing yourself from the rat race is the best medicine to thwart what consistently feels like you are wearing Gouda shorts.

Chin up,
Ann Marie

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One Set of Footprints

Many have mistakenly told me I was being very strong. In fact, nothing could be further from the truth. My Savior carries me.

Questioning the Faith

The first day of cancer shakes the foundation of faith through our human frailty. We think of our God as a merciful God. Cancer is not the poster child for a charitable God. Many patients and health/primary care givers question their own faith in the face of catastrophic illness.

God never left.

Many genuinely well-meaning people instantly pray for a cure. In fact, this is the last prayer to pray. When asking for prayer, lead by example praying the first one. Bringing yourself closer to God will strengthen your faith so you may have the strength to handle what you have to do.

Right now, you are being carried. God has the ability to help you do this. Pray for His strength in you.

Peace in my home.

When asking others for their prayer, you should first ask for peace in your home. Yes, I know you want to be delivered from the Cup. Christ was not delivered from His Cup in order to serve His purpose. This illness is your cup that others may see Christ in your heart...an impossible feat had Christ been delivered from His: Be more like Him.

Worrying over the body is a joint effort from professional care givers. Worrying over the soul is your job. Before you can do that job, peace is a prerequisite. You are not giving up by praying for serenity and courage. You are successfully navigating the grieving process.

Give the illness to Him.

God has the power to deal with the disease. Remember, part of God's plan may be to bring your spouse to the edge of mortality to ingrain the importance of being spiritually saved. As you deal with the physical, a firm faith allows you to realize death is merely the doorway to God.

Ask the tough questions and answer honestly.

Pointblank, as your spouse about Salvation. At this juncture, mortality is a reality. The gravity of the situation is ingrained. If the answer is no, evangelize without condescension. Testify as to the blessings in your life. Read about the Kingdom of Heaven.

If the answer is yes, praise and prayerfully thank God.

If your sick one is not ready to turn over his life, control and soul to Christ, seek counsel of your own. Bearing the knowledge of your spouse's imminent descent is a weight under which you may easily break. Seek serenity, for this is not a choice you may make for anyone else.

If the denial continues, pray for wisdom to know whether or not this is a situation you can change.

Calling in the Troops

If your prayer is answered with wisdom, recruit help. Let others witness to him to allow for Spirit to move within his heart. You may find it will take six or more people to exhibit faith before your spouse finds the peace which passes understanding. One person will press the button, and the Spirit will flood his soul.

The Blue Plate Special

God is not going to put on your plate more than you can eat. He may, however, do it before you know you are hungry.

Chin up,
Ann Marie

The Serenity Prayer

God, grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference.

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