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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